Welcome to Erin Bettenhausen's Web Site

-- Posted on Wednesday, November 1 2006

This will be my last entry...

First I have to say Happy Birthday to our angel Erin, she would be five years old today.

I want to say thankyou to all who have stopped by Erins site, a HUGE thankyou to those who actually posted in the guestbook. Keep her in your hearts forever...never forget

For our prescious Erin.... We will love you forever, time will never fill the hole in our hearts, its a place that only you could...unitl we meet in heaven.....

Holli

-- Posted on Wednesday, October 25 2006

Good morning

So its been a month since I have last updated, and since then my baby turned a year old. He is such a brave adventurous little boy. He has learned to climb onto the dining room table so now we have to leave the chairs turned on their sides.

Luke is still enjoying school. Grant goes on a day to day basis, he gets frustrated easily with his reading.

A few weeks ago Laura asked me if we could go get Erin so they could have a tea party. I explained to her that Erin had died and that she was in heaven(a place so wonderful no one ever wants to come back from). To my surprise she started crying, really crying with tears and everything. Laura is an emotional little girl, she can cry at the drop of a hat, and then two seconds later be laughing and giving her best cheesy smile. About three to four times a week Laura will now talk about her "sister up in the twinkle stars", she says "Erin is my angel sister up in heaven" Laura doesn't understand death, all she wants is her sister to play with, a stinky one year old little boy doesn't cut it. All Aidan wants to do is suck on Barbies feet, and swing them around by their hair.

So my birthday is coming up this Friday. I won't be celebrating too much, I will be getting ready for a costume party we plan on having on Saturday. Should be good fun, haven't decided on what to dress-up as.

I suppose this Sunday we will go and visit our little angel at the cemetary, two years, almost, since I held her kissed her, smelled her or heard her. We miss her like crazy, and are still trying to figure out why it happened to us(like we will ever get an answer). I figure its something that will never go away, just like the hurt we have for the loss of our daughter. Erin's birthday will soon be approaching(November 1). I can't imagine what she would look like. My mom had a dream the other night. In her dream she was talking to Erin, and Erin was about twenty years old. Something we will never get to see. Sad really, would she act like me, go to college, what would she be? Time to stop, to sad to think about.

On a lighter note, we saw some snow last weekend. Hooray, bring it on. We are getting excited about starting up our fireplace as well.

I better get the house somewhat clean.

Thanks for stopping by, Holli and Chris

-- Posted on Monday, October 23 2006

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-- Posted on Monday, September 25 2006

Good morning

Its been a couple of weeks so I thought I would drop a line and let eveyone know whats up. Well not much, soory I know it sounds boring but thats ok.

The boys have started up soccer again and this year Luke and Grant are on the same team, and Chris is their coach. They have won two games and lost one. Grant scored a goal in one of his games so he is pretty proud of himself, he still talks about it. Aidan seems to run everywhere he goes. He loves to climb up on things, anything he can. He has the bruises to prove his climbing and walking abilities are not mastered. Finally his two front teeth are coming in. As for Laura, well she is busy everyday playing with the kittens in Erins cabin, she cooks for them and likes to push them around in her doll stroller. Chris and I in our spare time have been doing some fall cleaning around the yard. There is lots to do and College football doesn't make it any easier. Yes I am a football widow, enough said.

We have had some good rains and our trees are loving it. Our grass is so green and my mums are just starting to bloom, it is offically fall and everything about this time of year reminds us of Erin, even the smell outside. I love this time of year, granted Erin died, but it is in my mind I can see eveything so clearly of those last few weeks with her. I have a difficult time remembering every detail of her birth and even at 2mos., 4mos., 6mos., etc. But her illness and death are crystal. We stopped at her gravesite yesterday, cleaned things up a bit and placed a scarecrow there. Then we went to my parents house for the afternoon, we picked pumpkins, the kids got to ride the "kid" quad/atv/4-wheeler whatever you want to call it, Erin was missed. The boys thought they were hot stuff riding around all by themselves. After that they did some mud jumping, don't know what that is, well its a huge pile of dirt they were jumping off and onto, and the end result was muddy clothes, shoes, etc. We all came home tired and ready for bed. I guess in a roundabout way that leads me to today, which is going to be filled with picking up the pieces from this weekend, all those fun things I refuse to do on the weekend, laundry, dishes, scrubbing the kitchen floor and canning the LAST tomatos.

Its time to go, Aidan is not being allowed to play with Lauras make-up and dolls.

Later

Holli

-- Posted on Tuesday, September 5 2006

good morning

Its just as I thought, Luke really enjoys school and likes to talk about what he did that day and Grant, he don't say much at all, one word responses is all I usually get.

Laura hasn't said to much about them being gone during the day, but is always very eager to go and pick them up.

Our little Aiddy(Aidan) has taken a few more steps on his own, it won't be long now. He and Laura have had the chance to bond (yeah right) now that the boys are back in school. Most of the time Aidan is getting into Laura girly things, you know the barbies, the polly pocket clothes(which he loves to eat, ok so he just chews on them,probably because I fish them out of his mouth before he can swallow).

We went on one last summer fling this weekend. It was with Chris' side of the family. I had the "pleasure" of wearing a swimsuit, we stayed all weekend at the Great Wolf Lodge down in KC. The kids had a blast. I'm glad to be home, back in the routine. Its nice being able to spread out a little, don't get me wrong the hotel was great, but somehow being confined to one room and four small children can wear you down, QUICKLY. Thanks to Jeff and Kim, they put up with our kids bombarding their room wanting to play with the cousins.

Erin was surely missed, but whats new right, Laura could have used her sister to play with, instead Laura made new friends"best friends" at the waterpark.

I should end this, lots of work to catch up on. Thanks for stopping by.

Holli

-- Posted on Tuesday, August 22 2006

Good afternoon

Hooray! school starts tomorrow. Grant isn't as thrilled, he still wants to stay up late and have friends and cousins spend the night. Luke is very excited, I hope his enthusiasm sticks around all year long. Laura said she wants to go to school to. I know that there are going to be some tears from her when she finds out the boys have gone to school without her.

Aidan had his eyes probed last Monday. He had been suffering from blocked tear ducts ever since birth. There is a 10% chance it won't work. But his eyes look good for now. Poor baby had to be strapped down fully awake while they did it, it only took a few minutes and thank God I wasn't around to see it. They brought him out to us in the waiting room, he had was trying to catch his breath he had been crying so hard. Good thing he won't remember it. That was always what we told ourselves about Erin procedures, she is to young to remember it. She was a trooper but still suffered, I am so glad she will never have to suffer again. As for the rest of my children there will be much suffering throughout their lives from sickness, heartbreak/heartache from boyfriends/girlfriends, schooling, jobs, you name it, never on the scale of Erins suffering(at least I pray not).

Other than that we are busy around here getting ready for fall, making plans on all the projects we want to get done before winter.

Our pumpkins are ready to be harvested but its to early I hope they can survive long enough to make it to October. Speaking of October, its coming up so fast, Aidan will be one. And you guessed it the boys have dug into our Halloween costumes and decor. They are already trying to decide what to be this year.

I am ready to clean up my garden but I still have tons of tomatos, hot peppers, and onions so I can't just yet.

And so it goes, time to start supper. Thanks for visiting,

Holli and family

-- Posted on Monday, July 31 2006

Afternoon

Its way to hot to be outside right now so I thought I would update a little.

Our, if you would call it a "vacation", is over we just went to the zoo one day and the childrens' museum the next. We all enjoyed it. Aidan did extremely well. He still isn't walking but getting into everything.

I canned corn today at my moms, with one of my sisters.

My Dad is going great considering his surgery last week, to make it short and sweet he had his shoulder(the ball that rotates your arm) replaced. He is very sore but getting along better than he thought. All those years living in that wheelchair(Thanks to Vietnam).

Laura has been having lots of tea parties lately, she has a wild imagination. She came downstairs one morning and said she had a tea party with Erin. I asked her what Erin was wearing, Laura said she had on a "Snow White" dress, and she had blue hair. Then she told me that she(Laura) was going to get some wings like a bird and turn into an angel. I told her lets hope that doesn't happen for a long time. She needs a regular girl playmate. What life would be like if she had her sister. I was thinking the other day that Erin would have been five this year.
What a smart girl she would be, almost getting done with preschool, would kindergarten be next? How could I forget the day Laura told me that Erin wasn't dead, she was at the old house and needed us to go and get her. She said Erin wasn't sick anymore that we could take her to the doctor, and make her better. Two Sunday's ago Laura and Aidan and I went to my parents country church, on our way out there Laura asked if we were going to be picking up Erin. Once again I had to tell her that Erin was in heaven that she had died because she was very sick, and once again Laura said "take her to the doctor and fix it." If only that would have worked!!

Memory of Erin.....We had a party for Erin on her first birthday and I can remember her and her older cousin(by about 6 months) were sitting by each other, somebody can't remember who, wanted to take their picture, when they said "say cheese" she did! shocked us. By fifteen months old she could say her uncles names her brothers names and the usual cow, duck, baby, ball, etc. We have it all on video. We need to get a new VCR(if they still make them) so we can watch those videos, all our VCR's eat tapes.

Time to move on the next project for the day, Grant needs to read and Luke needs to practice writing his alphabet, school will be here soon.

Thanks for stopping by, don't be afraid to leave a message. Stay cool. There is relief insight, 80's by Wednesday.

Later Holli

-- Posted on Wednesday, July 19 2006

Good evening

All I have to say is THANKYOU president Bush, for seeing that those "embryos" are life, and that its not right to destroy them for the sake of research. How many lives would it take to find your cures you say you might find? I guess most people don't respect life enough in this country, I know the President has gotten lots of flack for doing what he did but I can only support him. I have five children, having lost one only rings more true to me how wonderful these gifts from GOd are. Even if it would have been the answer to someday curing Erin, its just not right, GOD never intended for us to destory his gifts.

Thankyou, once again for protecting our innocent future.

-- Posted on Thursday, July 13 2006

Good evening

Wow what a week its been! Its Thursday and it feels like it should be Friday. A busy week I decided on Tuesday to have a yard sale on Wed. and Thurs. My sisters and I have put together a huge display of numerous items. We decided that there is so much stuff we are going to continue on Saturday.

No vacations for us just lots of work, the garden is getting away from me. The pickles and tomatoes are abundant(sp) I need to make more (kraut) my more cabbage is ready. The kids are confining themselves to the cool basement most of these HOT days. The county fairs are starting and they are anxious to go ride the rides. Way to expensive for us, but what can you do its only once a year, right?

I wish I could say things were more interesting around here, thankfully there not I remember those days with Erin, how I wished our lives were "quiet and normal" . I remember I was sitting in the hosiptal with her, wishing I could be stuck outside AT HOME working in the garden under that intense heat, it was always so cold in the hosiptal.

Life marches on for us. Everyone is doing great. We are making it, somehow. God is always there to provide for us. Sometimes we forget to ask him for help.

Loving you always, Erin, missing you dearly!!

Later
Holli

-- Posted on Wednesday, June 21 2006

Afternoon

How could I have forgotten about Fathers Day. Sorry 'bout that...HAPPY FATHERS DAY to all dads out there, especially Erins Daddy. We love you so much you are always there for us. We couldn't make it without you.

Lots of goodies from the garden these days, Thanks to the heavens above for opening up the other night and giving us over two inches of rain.

SO can you guess what the boys are bugging about lately-The Fourth of July, I don't know which they like more Halloween or July 4th. They are counting down the days until they can buy them and set some off. I am reminded of the few "Fourths" we had with Erin. I had bought everyone some red white or blue to wear one year, and we had big plans to celebrate but fate stepped in and Erin ended up with a major set back(some kind of infection) she was life flighted to Omaha a few days before the "Fourth" I got to fly with her, we got to watch fireworks from the helicopter, although Erin was to "out of it" to know. She had such a cute outfit to wear that year, and the holiday came and went without her getting a chance to wear it. Last week we dug it out of Erins clothes bag and Laura squeezed into it. You see no matter if it fits or not if she sees girly clothes she has never worn before(meaning Erins) she just has to try it on, then good luck getting it off. Im sure Erin wouldn't mind. Erin did finally wear it once, a few weeks after the Fourth of July.

Missing you Erin, thanks for keeping me company while I am weeding the garden, even though you cannot respond I know you are there.

Enjoying the summer-The Bettenhausens

-- Posted on Wednesday, June 7 2006

Good Afternoon

Well we are getting a few things from our garden, onions radishes, and all the garlic one person could ever want. We need some rain.

Aidan has got his first tooth, maybe I already said that, but it looks like there maybe two more coming in. I took him to the doctor today 20lbs4oz. He has a boil on his thigh that is infected so he had to get a shot, I have to take him back again tomorrow. Its some of the same antibiotics Erin used to get(all the heavy hitting kind) Aidan has also managed to pull himself up on everything he can get his hands on, even if it won't support his weight, once he is standing he likes to let go, we all know what happens then.

We made it out to Erins grave on memorial day. I picked some flowers from here, they were all different shades of pink, she would have loved them. We all wish we could have her here with us healthy like all children should be. But we will wait to be called home to heaven then what a glorious reunion with our beautiful angel Erin.

Not much else to say, its hot, its almost summer, and all I hear everyday is "Whats there to do, can we go to the neighbors" When does school start?

Later

Holli

-- Posted on Monday, May 22 2006

Good morning

Whats been happening since last week...well I feel as though I have been working like a slave trying to keep enough water on the garden, the new trees and the lawn. There is also the weeding of the garden, the mowing and how could I forget the housework. Although the house is a little lacking only because we have had lots of nice days, and the yardwork needs to be done. If we ever get a rainy day I will stay indoors a catch up on laundry.

May is almost over, that means Memorial weekend, camping, swimming and summer. This weekend we have a wedding,(Friday), Saturday we are having a small overnight party, tents in the backyard, a bonfire, and some grilling, games, and hopfully lots of fun. Sunday will be a rest day then on Monday we will visit the graves of loved ones lost. Especially our little angel Erin.

Speaking of Erin, we are all missing her lots lately, Luke has brought her to mind several times, asking me if I remembered when she shared a bedroom with them, we got to talking about how her feeding pump would go off in the middle of the night when she would lay on it wrong and put a kink in the tube(Oh my the annoying beeping) . Grant keeps saying he wants to make an "alive" potion so he can bring Erin back to life, along with the kitten we lost earlier this month. And then there is Laura she was helping me clean the storage room out in the basement and we found some clothes of Erins I had saved. Laura was to big for them but insisted on us looking thru them, which brought back lots of memories. Aidan, well everytime I see him smile I see a part of Erin. She sure picked out a good baby for us. Every night as I am rocking Aidan to sleep she is right there. The rocker recliner we bought when she was on treatment is now in Aidans room. That rocker helped us get thru some tough nights with Erin, when all she wanted to do was to be held. There were somedays that we wouldn't hardly move from that spot, all she wanted to do was rock back and forth. If I needed a break she would be content to lay in that chair by herself. I have learned to sleep upright because of that chair.

Well I have gone on long enough, Aidan is taking his morning nap and I need to get somethings done.

Have a safe Memorial Day Weekend

The Bettenhausens

-- Posted on Tuesday, May 16 2006

Congratulations to my sister and her husband-Its a boy!

-- Posted on Sunday, May 14 2006

Good evening

I know it seems so soon but I thought if I had a chance to update I would, take them as you get them.

Happy Mother's Day to all mothers out there, although you know there are some that are "mothers" but don't really play the part, that don't deserve to be. It is a privilege to me and I accept my roll as a mother to be the work of God. He works everyday thru me, to help me do the tasks that are asked of me. I call on him numerous times each and everyday.

Its these special days that I miss Erin the most. Being her mother was one of the greatest things that has ever happened to me. I would have never thought a child so young could have taught me soooo.. much. Her trials in life were a wake-up call from God. It doesn't seem fair her life was sacrificed to teach me a lesson or to show me the way. Maybe it wasn't just for me to learn, maybe several people were awakened by her struggles in life. Hopefully you all learned a little something about yourselves and you are now a better person for it. Does any of that make sence, I don't know its these journal entries I usually end up erasing. I don't make public everything I write.

On a lighter note Aidan is crawling all over the place, he has pulled himself up to his feet, the only problem is he can't get back down once he is up. He is seven months old today, and this of all days he decided to say "da, da". I guess its easier than "ma, ma".

Its time to stop, I have a little helper who, is fighting me for the keys, maybe he has something to say. (goodnight hopefully).

Later

Holli

-- Posted on Tuesday, May 9 2006

Happy Anniversary to my Husband

Five kids and eight years later, here we are still crazy about each other, and looking forward to many more years of wedded bliss(ha ha) No really, I love you lots!!!

Erin we love you and miss you, thinking of you lots, every time I see your little brother Aidan I see bits and pieces of you. He can make the same faces and has that glorious smile. He also gets me right in the back of the ankle/foot with his walker just like you used to(OUCH!)

I can't stay long as usual, just a few more things to put in our garden, the biggest one ever. Hopefully we will get a great crop this year, enough to give away I'm sure.

Just a reminder this Sunday is Mothers Day, don't forget your mother.

Later

Holli

-- Posted on Monday, May 1 2006

Hello

Where do I begin, so much has happened in the six weeks or so. Our basement is finally finished, and our computer is once again up and running. I really missed reading and keeping in touch with the rhabdoid families, four children have died in the past six weeks, I see there is also a child added to the list of children still fighting this disease.

We have been getting some great weather here, the rain has been good for our 100+ trees we planted. Only have planted a few things in our garden. The kids are having a great time living out here. One of our mother cats had a three kittens about a week ago. We also celebrated Lukes 6th birthday on April 19th, and Lauras 3rd birthday on April 20th. Laura is now older than her older sister. Sometimes I see her acting so grown up being so loving and helpful to me, with Aidan, and then there are those times she still acts like a terrible two year old, kicking and screaming.

Aidan, he is half way thru his first year of life. At his six month checkup he weighed 18 1/2lbs. and had grown about three inches from his four month checkup. He rocks back and forth on his hands and knees, scoots backwards, RUNS in his walker. Has only been spitting and blowing bubbles until the other day he said "umm ba", I need to get a picture of him on here. He really looks like Erin, he can make a silly face just like she did, they have the same hair(really blonde, compared to the other kids).

Chris and I made a few laps at the relay for life April 21. It was sad not being able to have her there with us. Seeing her name written on a paper bag in line with so many others who have gone on to heaven just like her, brought a flood of emotions to both Chris and I.

May 6th will soon be approaching, it is Erins original dx date. Three days after that will be our wedding anniversary.

Well I am sure I have left lots of things out but its bedtime for me. I am looking forward to keeping Erins sight updated better. Thanks to those who still visit and drop us a line.

The Bettenhausens

PS New Address: 39822 State Hwy 22
Monroe, NE. 68647

-- Posted on Monday, May 1 2006

Good morning

We are finally out and about since our 2 feet of snow, yes our prayers were answered. At least mine and Chris's, we love the snow, I think we are living in the wrong state though. Thanks to our neighbor for helping to dig us out.

Haven't been updating much lots of construction going on downstairs, thats where the computer is set up.

I had beautiful dream/vision of Erin last week,(while I was rocking Aidan I dosed off) she looked so good, her hair was about shoulder length, she had on a satin yellow dress, with a big bow tied in the back. She was just smiling, standing outside by a big tree the sun was shining behind her and it looked as though she was glowing.

I will have to catch up later, Laura is begging for a hotdog, and I can hear Aidan up from his morning nap.

Holli

-- Posted on Friday, March 3 2006

Good morning

Well the big move is done, now all thats left is putting things away, and starting a few projects to make this house our own.

The kids love it!! They now have seven cats to play with along with the three dogs we already had. Aidan even seems to like it out in the country, he sleep thru the night for the first time.

A BIG thankyou to my parents for helping us move, six trailers of stuff wasn't fun to move but we did it. Thanks to Uncle Joe and Uncle Brent for helping take on the heavy furniture. We will repay you!

Kids got over their illnesses but Grant is home again today with a sore throat and fever. Hope he gets over it soon.

I haven't missed the old house yet maybe not enough time has gone by, I think we all feel Erin is right here with us. I know she would have loved to have had the chance to play with all the cats we have now, kittens should be arriving soon too.

Well I can't stay lots to do, I'll catch up again soon thanks for visiting and leaving postings in the guestbook, they mean so much to us.

Holli

-- Posted on Friday, February 17 2006

Good morning

Its been a busy week. Tuesday we moved Erins cabin to the new house. Chris said it made him feel like to new house could be our home. That wherever Erins cabin went she went. After moving it my mom said "well now Erin's home." We haven't made the move yet, not until the first of March. We needed to move that first, we knew the weather was going to be turning for the worst, and so it has. They are talking a high of 12 today,Brrrrrrrrrrr.

Wednesday Aidan had his four month check-up. He is up to 17lbs. He has started eating cereal, the formula wasn't satisfying him anymore. He has even tried a little squash. He rolled over last week but I didn't see it. he has been working hard on that. When I put him in his walker he pushes backward and can actually make it go. Typical ACTIVE BOY. He still has tons of smiles to share, always smiling, if he hasn't put a toy in his mouth.

Laura was asking me about names the other night, to make a long story short she wanted to know Grant and Lukes middle names. We went thru the whole family, including Erin. I told her she had a big sister whose name was Erin Christine, I told her she had died. Laura's response was "Oh, she died?" Now everytime I mention Erin or we see a picture of her she says, "she died", and gets a serious/pouty look on her face the one where she tilts her head down and yet looks up without moving her head. Some day she will understand, and then wish she were here to play with.

The boys are excited about the move they can't wait to live out in the country. Mostly because we told them they could have cats now. Aside from that Grant would like to have rabbits and Luke wants chickens but no roosters.

Chris and I are looking forward to planting a few hundred trees, and a huge garden.

Time to wrap this up. Kids need breakfast. Thankyou to all who still stop by, it helps to keep Erins memory alive.

Prayers to Vals family,they lost her this past week, She was a friend of ours. She had a heart of gold.

Prayers to little Kaitlyn(ATRT fighter) her family says she probably won't make it thru the day. Its been a long painful journey for her. God give her peace and comfort.

A BIG thankyou to my uncle Dave for helping us move Erins cabin. He was one of the guys who put it together. We were so grateful he could help us move it.

Later

Holli

-- Posted on Tuesday, February 7 2006

Afternoon

Once again I am rushed at typing this. I have to leave to get Grant from school in about 10 minutes. I just wanted to update on whats been happening lately. We have sold our house and are moving about 15 minutes away from here. We found a little acreage and are excited about moving. Yes there are lots of memories here of Erin, not so many that were that good, but I wouldn't give them up either. It is just another step in our lives we are moving on to. I will give more details later.

Just when I get done saying we have been rather healthy this winter, BAM!, everyone of my children gets a nasty cold/cough and poor little Aidan gets it the worst, he has RSV but not bad enough to be in the hospital, thanks to Erin and all her medical equipment we can hopefully take care of him at home. We have her old nebulizer for breathing treatments and her suction machine to suck out all the "boogies" that are making it so hard for him to breath at night. I never thought I would have to use those things again. I pray everyone gets better here soon. No sleep for mom, makes for a very long day, especailly when Daddy is out of town for a few days, I get to take care of everyone all by myself.

Well thats all for now, time to go.

Later

Holli

-- Posted on Monday, January 30 2006

Its Lunch time!

But I just wanted to remind everyone of just how prescious life is. I just saw on the news that in Brazil a couple was out walking by a lake and they heard cries coming from a bag tied shut floating out on the lake. The man got a stick and pulled the bag ashore because they thought it was a cat inside. It turned out that it was a two month old baby girl! It gave me goosebumps and turned my stomach all at the same time. HOw can people choose to destroy life(abortion included)? What goes thru parents minds when they abuse their children? We fought so damn hard to keep Erin alive, and to hear sooooooooo, often about children getting hurt or killed by supposed loving parents or caregivers. It's NOT fair, I just don't get it and I know I won't until I meet my maker. There I got it off my chest, now go hug and kiss your children and be thankful the one up above trusted you enough to give you such a wonderful gift.

HOlli

-- Posted on Tuesday, January 24 2006

Good morning

Well all over the television this morning people are talkng about how this is supposed to be the most depressing day of the year. I am to busy to be depressed, especially if they are saying it on T.V. I guess, I think that is sounds a little superstitious(sp), just because someone says it doesn't make it true.

I am in a hurry this morning so forgive any mistakes in spelling.

We are all getting along great, Laura has a slight cold, mostly just a runny nose. the weather has been good to us we can get outside everyday, not sure if winter is ever going to catch us. Aidan is growing like a weed, he is such a good baby, always smiling. he has been trying without knowing it, to roll over. He gets his legs all twisted to the side, he just can't get his heavy torso over. All in good time.

Grant keeps begging me to take his baby brother to school, I would but it is difficult when Luke and Laura have to come with.

Our weekends most recently have been consisting of cutting and splitting wood, which Chris and I both enjoy. He lugs the heavy logs and I run the splitter. We hope to have a big supply ready for next winter.

Thats all for now, thanks for visiting and keeping Erin in your thoughts.

Later

Holli

-- Posted on Wednesday, January 4 2006

Good morning

Well we survived(but not without heartache) our year of firsts without Erin. Our first Easter, our first mothers and fathers day, our first Fourth of July, and our first family vaction without Erin. Each event we missed her dearly. Her one year death anniversary, it doesn't seem possible that she has been gone from us for over a year now. She should still be with us, we fought so hard to keep her here. Life would not be so easy for our family. Grandparents, Aunts and Uncles and cousins miss her too, and think of her often.

Grant is back to school today. Hooray!! no more fights between them to put up with, until he gets home.
Aidan is fighting thrush again, and his blocked tear ducts won't seem to clear up either. Other than that he is such a smily happy baby. I would have to say Laura is completely potty trained now, she hasn't had an accident in some time, and will go by herself if I am busy with Aidan.
I finally have the house back in order. We had a small New Years Eve party, and then a New years Day/Birthday party for Grant. We still have our real Christmas tree up and nativity set. They will probably come down sometime next week.
As far a Chris, well he would have to tell you his thoughts, One thing I know is that he trying to come up with someplace to go on vacation this summer. He'll have to remember we will have a six/seven month old.
This weather, how crazy, when is it going to feel like winter? I don't mind the cold and snow, maybe I need to move. Someplace where I am guaranteed a white christmas, and cold winter.
Laundry is calling, hopefully Aidan will give me a chance to fold it.
Thanks for visiting
Oh and congrats to my brother Marty, he got engaged this Christmas.

Later
Holli

-- Posted on Wednesday, December 28 2005

Afternoon visitors

If you didn't notice the new pictures check them out! Most were never seen by us before, they were all on Grandpa's camera. Big thanks once again to uncle Brent for loading those on.

We all made it thru Christmas, santa was good to the kids, although maybe he shouldn't have been. I can't wait for school to start again, just like every other parent out there. Grant has a birthday coming up on Jan. 1, he will be seven years old.

Oh great!, the boys just woke up my little prince(Aidan), time to go I will finish up later.

Holli

-- Posted on Wednesday, December 21 2005

I just wanted to give a big thankyou to uncle Brent for fixing Erins website. The new photos are actually of christmas 2003. Erin was wearing her stocking on her head in the first photo. Grant and Luke showed her how to do that. I forgot how little Laura was, so chubby and cute though. Aidan looks nothing like Laura, Laura looks nothing like the rest of the kids.

I still hope to get pictures of Aidan up soon.

Holli

-- Posted on Wednesday, December 14 2005

Good evening

I have to start off by saying I don't know how much I am going to get typed tonight, all my kids are bugging me, but if I don't do it now it won't get done, so they are just going to have to wait.

The snow is almost melted so I suppose we won't be having a white Christmas. Its been so cold and cruddy out I haven't got to Erins grave to put up the Christmas stuff, maybe we will get a chance this week. I made Christmas cookies and candies with my sisters and my mom yesterday. Kids were screaming, christmas music was blaring, and the toffee boiled over and burnt, other than that things went great, serious that is nothing compared to what could have happened.

I took Aidan to the doc today for his two month checkup, a whopping 14.3lbs and he grew an inch and a half. He didn't get any shots because they didn't have them, they hope to have them in by next week but they said that there are no gurantees. I made an appointment with another doctor on Friday so hopefully they will have them.

The other kids are doing good, we have been thru a couple of colds but other than that, they are anxiously awaiting going to Grandmas house for christmas.

Chris and I are doing ok. We think of Erin so much. What ifs come to mind so much during this holiday season. The kids bring her name up here and there, its always the same "I wish Erin was still alive so we could ...." THey fill in the blank with various ideas. They wish they could have her here to play games with them, they need her to even out the sides, boys against girls. One of the first days it snowed I think it was Grant who said that Erin and all the other angels were haveing a pillow fight.

We are trying to get some new pictures up, some of Aidan and some of Erin at christmas. I guess that would be all for now. Thanks for visiting.

Merry Christmas,
Chris, Holli, Grant, Luke, Erin, Laura, and Aidan

-- Posted on Friday, December 2 2005

Good morning

Where to start...WE had a great Thanksgiving Holiday. Everything went so smoothly on Thanksgiving at our house. The house was full people, its days like that you wish you had a bigger house. Everyone showed up except for my oldest brother and his girlfriend.

We have already decked the halls around here. Grant wanted a fake tree to put up, while Luke insisted we get a real one. We satisfied both boys, but little did they know that was what I was planning on anyway. I let them think they got their way. Finally got some snow around here too. Now it looks a little more like Christmas. I haven't started Christmas shopping yet, my traditional day after Thanksgiving shopping spree didn't happen this year.

Aidan is growing so fast, he is smiling all the time now, and even started cooing(sp). His two month checkup is just around the corner. I am anxious to see how much he weighs.

My sisters and I are trying to plan a day when we can make Christmas cookies together, but it seems as though someone is always sick or somebody has something else going on.

I wanted to say, for the rhabdoid families, I am praying for you this holiday season. Especially for those that have recently lost their child, and others that have recently got bad news in their fight against it.

On a lighter note, Laura has decided to go potty like a big girl. She doesn't want to wear a diaper anymore. I make her at night(so i don't have to wash her sheets eveyday) just until she gets the hang of it. This a milestone I never got experience with Erin. I often wonder if she(Erin) could have helped out Laura with it.
How great it would be to have both my girls.

Well Happy Holidays to all, I don't know if I will update again before Christmas. I will try.

Holli

-- Posted on Wednesday, November 16 2005

Good morning

I have got only about five minutes to give a little update.

We are going to be baptizing little Aidan this weekend, finally I know. I came from a family that baptizes babies at about two weeks old, so we are a little behind. I want to say thanks to Father Rod ahead of time, he has been there with us thru such difficult times with Erin we thought he should be there for some happy times too!

I will be hosting Thanksgiving this year for about 25 guests at our house, for my side of the family(its my turn) so I have got lots of cleaning and cooking to do. I love throwing parties so I am very excited.

Things we are thankful for:
Our new baby
The health of our children and ourselves
Family and friends
For Erin, and to God for giving us the opportunity to be her parents.
So many more things but my time is limited

Happy early birthday wishes to my husband Chris(37) on November 20th.
Happy Thanksgiving to all.

-- Posted on Wednesday, November 16 2005

Good afternoon

I wanted to say thankyou to everyone who has kept Erins memories alive by visiting this website. Being able to share her life with so many has helped us cope with her death.

The stresses of a new baby is forcing me to stop updating. Occasionally, I will, but for now I think I will take a break. I kind of planned this, since our year of firsts is over. What else can I say about our little Erin? I have to admit that it was harder this year not having her here for her birthday than it was last year. I suspect the holidays will feel the same.

Some plans we have for the coming months...we have been planning these for some time, but things come up you know...

*placing a headstone at Erins grave
*getting family pictures taken with Erin somehow remembered in them
*baptism for little Aidan

I would like to get some pictures up of our new little man, we will have to see what becomes of my good intentions.

Here we go again, "Aidy", as we sometimes call him is calling my name.

Later

Holli

-- Posted on Tuesday, November 1 2005

HAPPY BIRTHDAY ERIN!!!

You would have been four years old today. When I was up with Aidan around five this morning I was thinking back to the day you were born. We had an early c-section scheduled, we didn't know that we were going to be getting a little girl. When they pulled you out I remember your Dad saying with such surprise "It's a girl, It's a girl!!!!" We were so tickled to have a little princess, I couldn't wait to put you in a little dress.

I am going to make you a birthday cake today, cherry chip, with pink frosting. We will have ice cream too!! I hope you get to have cake and ice cream up there in heaven. Since I can't kiss and hug you on birthday I will distribute them to your brothers and sister today!!

We miss you and love you. We are more angry than sad that you can't be with us today. Its not fair that you had to go, but we know one day we will be celebrating together. Until we meet again sweet Angel Erin.

Love
Dad, Mom, Grant, Luke, Laura, and Aidan

-- Posted on Saturday, October 29 2005

Good Afternoon

I have been meaning to update all day, but time just keeps slipping by. Remembering every moment of last year, and having no regrets!!! We miss you soooooo much Erin.

I found a poem that says alot about the way we feel today and everyday. Until we meet again my sweet angel XOXOXOXOX

Sweet Dreams
by Dawn Glenton

Sweet dreams are all I have of you, they're all you left behind,
Those cherished, lovely memories, never again to find.
On earth you were so wonderful, no child could I compare
To all the love you gave to me, you were so meek, so rare.
Sweet dreams they keep me going through the long and lonely night,
How much I wish that I could hug you here and squeeze you oh so tight.
If I could walk to heaven dear, to see you everyday,
Just know I'd never want to leave, I know I'd long to stay.
We parted here on earth my child, but God's will shall be done,
Then dreams will be reality for once more we'll be one,
I love you for eternity, forever and some more,
Because you were the sweetest child, the kindest, the most pure.
If Heaven's full of Angels, like you were here on earth
I thank the Lord for lending you, for giving me your birth,
One day my child I'll see you there, so please look out for me,
You'll see my smile so wide before you see my spirit free.
God takes the sweetest Angels first this we know is true,
For he came here and looked around, my darling,
He chose you!

-- Posted on Tuesday, October 25 2005

Good morning

Aidan just went down for a nap so I thought I would give you a quick update. He went in for one week checkup last Friday, he weighed 8lbs. 8 oz. Growing so fast already. He is still a good baby never complaining too much. Sleeping at night needs some improvement, but as you know this is my fifth child so I know what so expect as far as sleeping patterns.

Each day the boys ask what day it is(don't ask me why they do this everyday, its one day later than yesterday) then they run to the calendar and count down they days until they get to wear their costumes.

Still don't know what to do about Saturday, hopefully I will know that day. With my hormones out of whack yet I hope it won't be a downer day.

Well I have to go, Aidan woke back up. I feel I am rambling anyway.

We love you Erin, we will never forget you. Thinking back to one year ago, and cherishing those sweet menories of you.

Holli and Chris

-- Posted on Monday, October 17 2005

Good morning

Well we are back home. We got our fifth child Friday morning. As we were expecting it was a boy we named him Aidan Thomas. He looks like our oldest Grant. Erin looked like Grant to, so I guess you could say he looks like Erin as well. He is a good baby, he hasn't been to fussy yet. He has got a good head of hair already. He weighed 7lbs. 15oz. and was 20 and 1/2 inches long. We are looking forward to loving him up and watching him grow.

Chris and Holli

-- Posted on Wednesday, October 5 2005

Good morning

Yes its been a while, I have been to tired lately to update. Only ten days left until this little wiggle worm gets to show himself. We are also quickly approaching Erins one year death anniversary. I am not sure how we are going to recognize that day. I have read several different ideas that other parents have done, just not sure yet. I am not sure how this day can be much different than any other day. I think of her each and everyday. She is never far from our thoughts. Her name and memories come up quite often at the dinner table.

Laura has been running a low grade fever. Just yesterday and this morning. It doesn't seem to slow her down much. No other signs of flu or cold, don't know whats going on.

The boys have been busy decorating for one of their favorite holidays. Their bedroom even has spooks hanging up. Luke wants to be a Ninja or is it a Grim Reaper for halloween. Grant wants to be an Indian for school and then on the halloween night he would like to dress up as some kind of "torture guy" I don't know what that is exactly, mostly he wants to carry around weapons. These ideas for dressing up change regularly. Laura will be some kind of princess or ballerina. She loves cinderella and likes to get in her dress up clothes. She sings and dances most days. I can't wait for christmas, she is going to be so easy to buy for.

Chris and I are still trying to decide on a name for the baby. My mother asks me just about everyday if we have come up with a name. I need to see the baby first.

Don't know much else. I probably won't update again until after the baby is born. Chris will have to take over for a while, I won't be able to do steps for a couple of weeks. Oh, I almost forgot Happy Birthday to my Dad this Friday.

Later

Holli

-- Posted on Tuesday, September 27 2005

This is an interesting article about the state of childhood cancer drugs. Children are our future.......

Chris

Research Near Standstill for Childhood Cancer Drugs Sun Sep 25, 8:00 PM ET

Effective treatments are not yet available for 20-25% of children diagnosed with cancer — and few new drugs appear to be coming anytime soon, according to a report from the non-profit Institute of Medicine (IOM). The authors of "Making Better Drugs for Children with Cancer" warn that drug research is near a standstill for most types of childhood cancer.

"There's a desperate need for new approaches," said Peter Adamson, MD, an editor of the IOM report. "The success in pediatric oncology has been made with drugs that have been around for 30 years," he said.

Doctors made great progress for many years, mainly by giving children more intense chemotherapy regimens using drugs developed for adults. Survival rates soared for certain cancers like acute lymphoblastic leukemia (ALL) — then hit a plateau 4-5 years ago.

"Our ability to move ahead has waned. Overcoming the most difficult cancers with higher doses is not likely to succeed anymore," said Adamson.

The Missing Profit Motive…and a Bright Idea

About 400 new chemical agents are currently in development for cancers that strike adults, Adamson said. For children, on the other hand, only about 100 clinical trials are open at any given time, according to the National Cancer Institute. Some of these look at new drugs, but many are studying new uses of older therapies.

Many scientific discoveries that show promise for treating childhood cancers lie undeveloped, according to the IOM report; because childhood cancer is relatively rare, the market is too small to be worth the hundreds of millions of dollars needed to bring an experimental drug through testing to gain FDA approval.

"There's not a profit in developing drugs for children's cancers," explained Malcolm Smith, MD, PhD, who oversees new pediatric drug development for the National Cancer Institute.

"We have very powerful tools now being applied by pharmaceutical companies. They allow us to learn more than ever before about what allows cancer cells to grow," said Smith. "It's so important to use these tools now for childhood cancers," he added.

The IOM report calls for a new public-private partnership to speed up drug discovery.

Government, academic researchers, private industry, and patient advocacy groups would work together. Drug companies might allow their private "libraries" of experimental agents to be tested against pediatric cancer cells by government researchers—perhaps even before screening them for other uses—and the companies would keep the rights to sell treatments that prove successful.

And the National Cancer Institute would become a "developer of last resort" when a company decided not to fund the research and development of a drug that showed promise only for children with cancer.

'Targeted Drugs' Offer a Sliver of Hope

Some of the new drugs being testing for children with cancer are "targeted" therapies, which zero in on cancer cells but spare normal cells, so they cause fewer harmful side-effects than standard treatments. Those side-effects can create lifelong medical problems for survivors of childhood cancers.

"For many children current therapies are curative," said Adamson. "But the price they pay in long-term side effects is far too high."

About 20 targeted agents are being tested against children's cancers, but like the chemotherapy drugs in current use, most were developed for adults. A few active clinical trials are listed below, and information about others may be available from the Pediatric Oncology Branch, Center for Cancer Research, at NCI.

Avastin (bevacizumab) – for neuroblastoma and certain sarcomas. Iressa (gefitinib) – moving into phase II trials for brain tumors and some sarcomas. Rituxan (rituximab) – for children with lymphoma. Mylotarg (gemtuzumab ozogamicin) – in phase III trials for acute myeloid leukemia in children Lapatinib – for children with brain disease. Gleevec (imatinib)¬ – for children newly diagnosed with Philadelphia chromosome-positive acute lymphocytic leukemia, along with standard chemotherapy.

Can these "smart-drugs" disable any of the 12 major cancer types that affect children?

"Aside from leukemias, the types of cancers children get are largely different from those of adults," explained Rick Alteri, MD, medical editor for the American Cancer Society. "Targeted therapies developed for adult cancers may work in children, but they may not," he said. "Pediatric cancers don't necessarily have the same gene mutations."

"On a positive note, if new targeted drugs are developed specifically for childhood cancers, they may be more effective than those used in adults, Childhood cancers tend to have fewer gene mutations driving the cancer, so attacking a single target with one of these new drugs may have more of an effect," said Alteri.

Children Can't Wait
Childhood cancer researchers are getting access more quickly now to new cancer drugs, said Smith--sometimes even before they're approved for adult use. In the past, long delays before being able to test drugs in children have been a problem. This is partly because drug companies were afraid that a rare but serious side-effect or death in a child taking an experimental drug could derail all testing of that agent for children or adults for any use.

Adamson feels that drug developers are unreasonably concerned about rare events. "The reality is children tolerate phase I therapy [new agents being tested to find the best dosage and possible side-effects] as well as or better than adults," said Adamson. "Once the initial studies are done – that is, phase I trials in adults – study should begin in children."

"We need some adult data, but should not have to wait a decade before beginning pediatric studies," he added. The IOM report offers specific suggestions to eliminate the current delays between testing a new cancer drug in adults and in children.

Cancer is still the leading cause of death by disease in US children ages 1-15 — it's expected to strike 9,510 children in 2005 and cause 1,585 tragic, premature deaths. If researchers could harness current scientific knowledge and tools to create new drugs, Adamson and colleagues write, "…there is every reason to believe that cure rates could be improved for all pediatric cancers, including those for which current long-term survival is very low, such as brain tumors."

Note: Parents looking for new treatments for their children can search for open clinical trials through the resources below.

American Cancer Society/EmergingMed Matching Service
Free, confidential search of more than 3,000 clinical trials. 1-800-ACS-2345

NCI Clinical Trials PDQ Search -- online or by phone at 1–800–4–CANCER

CureSearch: National Childhood Cancer Foundation and Children's Oncology Group

-- Posted on Friday, September 23 2005

Hello

So fall has arrived and I couldn't be more excited. Only three weeks left. I go in for weekly visits now, the baby seems happy and content. I pre-registered at the hospital on Thursday, it was exciting discussing all the plans for the baby.

Last Sunday Laura and I went to Erins grave to clean up the old faded flowers, we replaced them with a few fall decorations, I know Erin would approve.

The boys have us going thru Halloween decorations already, none have been put up yet, it makes me a little sad when I think about last year. Erin was here to enjoy them with us. Well maybe enjoy is a strong word, but at least she was still alive.

There really isn't much other news, we hope to get lots done this weekend, you see the Huskers are not playing this weekend, yea!!! Time to go figure out what to make for supper.

-- Posted on Thursday, September 15 2005

Good afternoon

Thought I would update a little. We have had a few interesting days recently. It all started last Friday night when my sister and her husband and their kids were over visiting us. Our power went out, we hadn't eaten supper, it was getting dark, and the kids wanted to watch T.V. We got along with pizza we picked up in town, candles and flashlights to see with and no T.V. just like in the good old days, we had to play games. Well it turns out our addition last year caused our underground lines to go bad, they should have been moved but were not. Thats all I have to say about that. Oh, we have power, they restored it that night after the kids went to bed. On monday morning I came downstairs to get the pieces of the crib so that I could put it together, when I went into the storage room, there was water standing, our brine tank for our watersoftner had a crack in it and leaked everywhere! We got that replaced and the floor is almost completely dry now. They say things happen in three's. I am still waiting for the third. Maybe my kidney stone a few weeks ago started it all. Either way we survived, we have been thru worse, no matter what comes our way we always look to God to help us thru. He is always there!!!

I bought a few things for Erins grave I haven't made it out there to clean up but plan on doing it either tonight or tomorrow. There last few cool nights have that smell that remind me of last fall, when we knew Erin would someday no longer be with us.

The boys are liking school, haven't heard of any wrong doings yet. So I assume everything is going ok. Grant has started soccer again, he has practice every Thursday night, then a game every Saturday only until mid-Oct. Luke was suppose to play but doesn't have any interest in it, so maybe next year.

Lots of people ask me how I have been feeling...If you are a women who has had children, you already know what its like those few final weeks before...If you are a man who is married and whose wife has had children you should know not to ask such a question? I mean do you really want to know, how much time do you have? For the most part I feel pretty good, I don't like to get into detail, when people ask those kinds of questions its not because they really want to know its just for conversation.

Well time for soccer got to go, thanks for stopping by..

Holli

-- Posted on Thursday, September 8 2005

Dear sweet Erin, just because we have been missing you!!

I miss your laughter, fun, and gentleness
by Nicholas Gordon

I miss your laughter, fun and gentleness.
I miss the things I used to do for you.
I miss the time, now filled with emptiness,
When each day was a stage for something new.
I miss your love, though mine for you remains
A passion with no outlet to the sea,
A teardrop in a desert, that contains
Whats left of my maternal ecstasy.
I miss your presence, like a silent chord
That anchored even solitude in grace.
I miss, for my love's labor the reward
Of seeing some small pleasure in your face.
All of these I miss, and yet they are all here
Within my heart, far more than I can bear.

Love ya
DAD and MOM

-- Posted on Wednesday, September 7 2005

Good morning

Well the summer is over for us, even though fall doesn't arrive until September 22. We had a nice relaxing Labor day weekend. College football started, I have to admit I am a football widow. Yes my husband starts watching these games on Thursday nights and barely takes his eyes off the t.v. until Sunday night right before he goes to bed. Its difficult getting fall projects done, unless of course the game is not on T.V. But there is always one team he likes playing on t.v., I take that back, even if he doesn't like them he still watches the game, I don't get it.

Enough about football. The boys got a wish to come true last Friday. I brought from my parents house two very small kittens that were abandoned my their mother. Some people think I am crazy, we bottle feed them every four hours(except at night) and plan on raising them. We already have three dogs(which don't know what to think of the cats) so some would ask what are you doing, but, some of my reasons are that kids need to be shown how to be compasionate(sp), I am hoping they will show more responsibility towards these cats, since they reeeaaalllyyy wanted them, and what the heck you are only a kid once and Grandma said she would take them back anytime(once they could eat on their own). So far so good the boys love them lots, little sis doesn't get to touch them when they are around. I wish Erin could have been here for this experience, she had a battery operated mechanical kitten(black and white) that was one of her favorite toys near the end. She always got a huge smile on her face when it would purr or meow. We sent it with her to heaven.

I had a doctors visit yesterday, only four more weeks to go. I am ready to reclaim my body.

Potty training for Laura? How is it going you ask?, not so good, she is afraid of the toilet. Little bribe treats haven't worked. I think I will back off for a while. What will it matter? I heard it once said that when filling out a job application there are no questions asking when you were weaned from the bottle, took your first step, got your first tooth or how old you were when you completely potty trained. So I am not worried.

I suppose I better stop there, thanks for visiting and remembering Erin.

Holli

-- Posted on Tuesday, August 30 2005

Good afternoon

I guess its about time to update again, so where do I start. Lets see, well, the boys first few days of school went well. To their surprise they have enjoyed eating lunch at school. Luke likes to complain about the nap time they have. He hasn't taken a nap regularly during the day since he was two. Grant has no complaints so far. Laura has gotten over them leaving, she has learned that she gets all of my attention during the day. Wait until the new one comes!! Rude awakening!!

Chris and I finally got a night out together and broke even at the horse races. Saturday night we took the boys to a movie. Sunday we expected to go to church and then a little light house cleaning but that didn't happen. Unexpectedly I began having a low backache and severe pain in my abdomen(sp). So we headed to the hospital, I wanted to be sure eveything was ok, besides the pain was getting worse. No problems with the baby, it was kidney stones. Actually just one, and everything is right once again. Some say having a kidney stone is some of the worse pain one can have. I have to disagree, true it was painful, but I have had some pretty painful contractions with childbirth.

As I was lying in the hospital that night, thoughts of Erin flooded back, mostly because of all the familiar sounds once again of being a hospital. The I.V. pump went off(started beeping) and I immediately wanted to hit the silence button, I knew where it was but I didn't want to step on anyones toes. I'm sure the nurses don't get to many patients that know how to run the equipment. I did talk them into letting me unhook myself from the baby monitors when I had to go to the bathroom.

I also realized all that I have to do before this baby is born. This week is being dedicated to finishing up the little things like vaccuming spider webs on the ceiling in the kitchen and laundry room, and dusting the wall hangings and ceiling fans. I also want to head out to Erins grave to change the flowers and add a little FALL FLAIR.

Here's hoping I get it all done!!

Holli

-- Posted on Wednesday, August 24 2005

Afternoon

Well here we are half way thru the week already. The boys had their first taste of school today. They were both in such good moods this morning and ready to go. I only wish everyday could go as smoothly. They came home very excited about being back to school and seeing their friends.

Laura and I will have our first full day alone together tomorrow. I'm not sure what we are going to do. I think she will become somewhat bored as the day goes on and her brothers aren't around to play with.

I canned another 10 quarts of tomatoes on Saturday, and I am officially done. Chris would love for me to make some salsa, but I don't have a very good recipe, it doesn't turn out right.

I had my doctors appointment yesterday. Everything has gone just as planned, the baby's heart rate was perfect, I lost a pound, so that was perfect, and I can plan on having this baby somewhere around mid October. We have to decide the exact date we want and then tell them when I go back in for my next appointment, which is in two weeks.

The girl in Laura is oozing out of her more and more everyday. She is really into dressing up in dresses(and dancing like a ballerina(sp)) She likes to carry around a purse filled with stuff, and most days I have to spend a few moments playing babies with her. I wish Erin was here to play with her. I can't imagine what it would be like if the boys were at school and it had been just us girls at home. Laura needs another girl playmate, so Cathy, we have to get her and Allison together.

Well thats all for now I need to start supper. Thanks for visiting us.

Holli

-- Posted on Friday, August 19 2005

Good morning

What a busy week its been. I think we have been gone everyday this week. To think I wanted everything to be nice and calm the week before school started, you know to get everyone on schedule.

I cut the boys hair yesterday. They needed it so bad, and my sister is always booked. They just get a buzz cut so its not that difficult to do. We have to go back to the dentist today for the last time. The boys have had pleasant experiences there so its not hard when they have to back the next day to finish up the work they need done. I don't mean to make it sound like they have all this dental work they need done, they are little and they like to spread it out.

I canned another 12 quarts of stewed tomatoes this week. One more round and I will be ready for the winter. I have also been getting some things ready for the new baby. After I have it, I won't be doing much (major) cleaning, so I have been trying to get some of that done. I need to get the crib put back up. I also have a desk I need to move upstairs for the boys to do their homework on. This weekend should be rather busy with yard work, we also wanted to make it to the horse races one night.

I guess that wraps it up for the week, next week I have a doctors appt, so I probably won't update again until after that.

In my dream last night I got to see Erin running and walking around without her walker. I thought to myself, I need to get to her so she don't fall but then she just took off running and laughing. We were in church and she had a bag full of dolls and girly things, she was making lots of noise and having a good time, In my dream I kept thinking I couldn't wait for church to get out so I could play with her. Thankyou sweet angel for visiting me again. Daddy and Mommy love you lots and lots.

Later

Holli

-- Posted on Monday, August 15 2005

Afternoon everyone

Thanks uncle Brent for updating pictures again, I assume it was you who did it.

Chris made it back. They got rained on for most of the weekend, but you know guys, as long as they are out with other guys(no women or children) they will live thru anything. I had a little fun this weekend to. No need for details just want to say thanks to Randi for the interesting night, good company and good conversation. I still haven't checked out those videos you recommended. We will save that for another girls night out.

The boys go back to the dentist again this week to fill some cavities.

This is the last full week before school starts. The reality hasn't set in for either boy.

One short story of Erin. Today I stopped by my parents house, they had just gotten home themselves and my mom was going over the messages left on the phone. She has some very old messages saved, a couple of them being Erin. It was so good to hear her voice again. It was just like I had remembered it. My mom also played a message of Laura(very young, maybe 6mos old.) giggling. If only we could jump back in time like that. Push a button and for a while we are living in that moment again.

Thats all I have for now.

Holli

-- Posted on Saturday, August 13 2005

Good morning

Chris left yesterday for his weekend getaway. It looks like they have been getting rained on. The high for where they are today is 59 degrees not to mention the rain they might be receiving. Brrrr... Grant and Laura sure had a hard time with Dad leaving yesterday, lots of tears. I think alot of it stems from Erin illness and the kids having to stay with relatives, when Chris and I both had to be with Erin. None of us like to stray to far from home anymore. Even when we are all together we can't wait until we get back home. Chris and I are hoping that it will fade and being away from home or one another won't be so bad. Some probably think we are crazy, but we are just starting to settle back into ourselves from all the running and overnight stays we did with Erin.

Erin has been on my mind so much lately. I miss her so much. It goes in spurts as far as the bad days, and really wanting her back here. Its like you go for a couple of weeks knowing she is alright and so are you, and you love to look at all the pictures of her and think of all the times spent with her good or bad. Then you get a few hard days where all to want to do is cry when you see her picture. Its not a guilt feeling or sad feeling but kind of a self-pity feeling. All you ask God for is one more day, hour, minute, kiss, hug, just something from your loved one, just to make YOU feel better. Well I have made it thru another round of those days, pregnancy hormones make it harder. I have read books, pamphlets, articles on the "greiving process" and have come to the conclusion that anything goes. I think I fall close to that category.

Happy Birthday yesterday to my baby sister Sarah. She is 25. It still feels like she should be about 15. My oldest sibling my brother Marty will be 33 on Monday so Happy birthday to him.

I was just thinking this morning that last year at this time we had just recently had Erins very last MRI. We found out that the last 30 days of radiation had not affected the tumor and that there was new growth elsewhere. Talk about some very difficult news, but we, like we had been for the past year just took one day at a time. We knew there wasn't going to be much time with her, we tried to keep things very normal(as much as you can with cancer). I am very glad that Erin was to young to understand what was happening. I know she understood more than what we think. But what I am trying to say is that I am glad we never had to sit down with her and explain to her that she was going to die, that there was nothing more we could do for her.

Wow I have been updating for too long, I need to get Laura up and breakfast done. Thanks for visiting Erin site, and thanks for caring about us.

Holli

-- Posted on Monday, August 8 2005

Good morning

Last week Laura and I finally got our hair cut. Thankyou Sarah you did a great job. Laura looks so much older now. We left last Thursday for another getaway. Mahoney State Park was the final destination. We had a great time with Chris' family. Good weather always helps. I did a little too much hiking around my legs are killing me. I can't wait to get my old body back. It won't be long.

The boys have got all their school supplies, and uniforms ready to go. I finished up shopping yesterday.

Today the boys have dentist appointments, just one more task to get done before school. Hopefully by this weekend I will have enough tomatoes to can. Chris is going on a guy getaway weekend, this weekend. So I will be holding down the fort here. Once this baby is born I WILL get my chance to have some time with just the girls. There is a family reunion on Saturday that the kids and I might attend, it depends on the weather though, because its outside. If it is to hot we won't be going, I have had enough of the heat this summer.

One more quick story before I tend to the housework. This weekend we were at this wildlife park, Chris and his Dad decided to take a little hike, so my mother-in-law and I took the kids to get a snack and wait. We sat down on some picnic tables next to another family who had a little girl about 3years old. She had very blonde, very thin hair. After they left Grant said in a very concerned, caring way, "That little girl looks like she has cancer" I assured him that she was probably not sick and that she just had very light colored hair, and not much of it. I have to agree though when I first looked at her I saw Erin to.
Laura could have used her big sister to play with this weekend, she was the only girl, and being the youngest, the boys wouldn't play with her. She had to tag along and not get in the way.
Thank to everyone for their suggestions on how to include Erin in our family photo. There were some great ideas, I will run them past the photographer and see what they think as well.

Thanks for visiting

Chris Holli and family

-- Posted on Sunday, July 31 2005

Good afternoon

We have returned from vacation. We left last Wednesday, and had a great time in the Black Hills. We did lots of sight seeing, which isn't always a good idea with a two year old, but we made it. We also visited kid friendly places. We hope to go back next summer when Laura is a little older. The new baby will have to stay behind with a grandparent.

Erin was greatly missed this weekend as this was our first real vacation without her. The last time we went anywhere for fun, and of great distance was Colorado, when Erin was about 8 mos. old. We kept thinking about what it would have been like to have her with us this weekend.

There was lots to do since coming home, laundry to catch up on, mowing the lawn(which I need to go back outside and help with) and garden work. It was a great vaction, but nothing beats the feeling of being back home. I wonder if that is what it feels like when we enter heaven. Is it like we have been gone on vacation(a good one or not), and then finally we make it back home????

There are a few more getaways for the summer then back to school. I have been thinking about getting family pictures lined up for this fall once the new baby arrives and I want to have Erin somehow remembered in the picture with us. If you have any ideas let me know. I guess if you get what I am trying to say, its hard to explain what I mean.

Well duty calls, thanks for visiting.

Holli

-- Posted on Wednesday, July 27 2005

Good morning

I hope you all had a chance to read that article we posted here. I trust you told your friends and family what you read, getting the word out there is a start!

I went to the doctor yesterday, all looks great. My doctor gave me an A+. I will see him in another four weeks then after that its every two weeks. I also found out that I can have the baby delivered anywhere from two weeks to ten days before my due date. I am going to be having a repeat c-section, so that is the reason I can go earlier, my doctor doesn't like to take any chances of anything going wrong.

We are enjoying the beautiful weather outside, finally cooled off. My garden is thriving, I picked fifteen tomatoes the other day. Grant ate three of them right away. I wish the other two kids loved veggies as much as he does.

Not much else going on here, kids are calling and my train of thought is gone now anyway.
More to come later,
Holli

-- Posted on Friday, July 22 2005

Who's Fighting Cancer in Kids? Drug Firms Not Interested

By Liz Szabo, USA TODAY

(July 20) -- Fourteen-year-old Max Levine owes his life to experimental cancer therapies. Yet a drug that helped keep him alive might never reach the market.

University pharmacists mix the medication, called 131I-MIBG, for patients who have no other options, says his doctor, John Maris, an associate professor at The Children's Hospital of Philadelphia. Max's disease - neuroblastoma, a tumor of the nervous system - afflicts just 650 children a year and is too rare to attract drug developers, Maris says. The tumor, like all childhood cancers, is considered an "orphan" disease.

"If our trial is successful, and we prove this drug cures patients, there is no guarantee that anyone is going to make it," Maris says. "We could say, 'We've proved this drug works, but we don't have any.' " (Related story: Kids' cancer drugs run short)

Maris is one of many doctors who are frustrated by the lack of interest in developing drugs for young cancer patients. A government report in April found a "near absence" of research into pediatric cancer drugs. About half of the oncology drugs used to treat children are at least 20 years old, according to the report by the Institute of Medicine, a non-profit group that advises the government on health policy.

Most drugs given to children were developed for adults, then passed down to children. In the past 10 years, only one cancer drug, Clolar, has received initial approval for children.

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Stephen Sallan, chief of staff at Dana-Farber Cancer Institute in Boston, says adults attract more cancer research than children because they are a far larger and more lucrative market. Patients younger than 20 make up 12,400 of the nearly 1.4 million Americans stricken with cancer each year. Drug companies are generally unwilling to invest hundreds of millions of dollars into such a small market, he says.

Why adults instead of kids

Drug companies say there are sound reasons to focus on adults. Susan Desmond-Hellman, president of product development at Genentech, says she's compelled by the opportunity to help large numbers of patients. Not only does cancer strike far more adults, but their disease is less curable: 64% of adult cancer patients can be cured, compared with 80% of kids.

Organizing clinical trials for children also is difficult, Desmond-Hellman says. Because doctors are reluctant to try experimental drugs in kids who might be cured by standard ones, only a fraction of pediatric patients are eligible for early clinical trials. Enrolling enough kids to test a new drug can take years.

There are financial risks, as well. Companies typically invest more than 10 years and $800 million to bring new medicines to market, according to the Tufts Center for the Study of Drug Development.

Companies fear that if problems surface during pediatric trials, an otherwise promising drug might never be approved at all, even in adults. "It's a big risk for a small reward," Sallan says.

Because new, patented drugs are the most profitable, relatively few companies are interested in the older, generic drugs on which young patients depend, says Mary Relling, pharmaceutical department chair at St. Jude Children's Research Hospital in Memphis.

Production problems at one plant can disrupt the entire supply of a drug. Recently, doctors have struggled with shortages of at least five key oncology drugs. In one case, some children have had to go without a leukemia drug.

Doctors such as Sallan say they don't want to give up on children with cancer, who have perhaps more to lose from the disease than other patients. Young survivors pay a high price, their bodies scorched for up to three years with therapies so toxic that many are left permanently disabled.

New "targeted" therapies, which mostly spare patients from the ravages of conventional chemotherapy, might allow young survivors to lead normal, healthy lives, Sallan says. These breakthrough drugs are being tested almost exclusively in adults, however. Only one, Gleevec, has been tested in children and approved for their use.

Targeted drugs developed for adults might not help children, says Mitchell Cairo, chief of pediatric hematology and bone-marrow transplantation at the Morgan Stanley Children's Hospital at Columbia University.

Chemotherapy works for all ages because the drugs act broadly, poisoning growing cells - healthy and malignant - throughout the body. Today's "smart drugs" target only cells with particular genes, Cairo says. But the genes targeted in common adult cancers may not be the same ones that drive pediatric tumors. And targeted therapies often work for only a fraction of patients with particular types of cancer, which could shrink the market even further.

Maris says what children really need are drugs designed just for them.

The Food and Drug Administration has created a number of incentives to encourage companies to make pediatric drugs.

Through its orphan drug program, the FDA awarded Genzyme seven years to sell Clolar without competition from generics. Because Genzyme tested the drug in children, the FDA extended that exclusivity by six months. The FDA also gave Clolar "accelerated approval" in December, based on a study of 49 patients.

Yet such incentives haven't done enough to promote new pediatric drugs, according to the IOM report. Businesses have no incentive to test drugs in children early, because they receive the same benefits if they conduct trials before or after approval, the report concludes.

"There's a reason these drugs haven't gone forward," says David Parkinson, who collaborated on the report and heads the oncology development at Amgen. "They cost more to develop than they will potentially earn."

Promising strategies

Some doctors say they're starting to see progress. Researchers are testing more than 20 targeted therapies in children, says Malcolm Smith, associate branch chief of pediatrics for the National Cancer Institute's cancer therapy evaluation program. Several medications such as Velcade, Rituxan and Iressa already have been on the market for adults for several years. Many doctors would like to see drugs tested in children earlier.

That's why the NCI recently created a program to screen 10 to 15 promising drugs in the lab against common pediatric tumors.

Advances in molecular biology also may help. At Dana-Farber, scientists enroll patients in studies based on the biology of their tumors, not on their age, Sallan says. Doctors are planning to test a drug in adults and children with a type of leukemia.

St. Jude has launched a $10 million effort to begin testing drugs earlier. The hospital's director, William Evans, hopes industry eventually will collaborate with St. Jude, which recently opened a drug-making facility, to develop new therapies.

More coordination is needed

While such steps are encouraging, they are still far too rare, Parkinson says.

He suggests a more systematic approach: Government, university scientists, industry leaders and patient advocates could form a "public-private partnership" to jump-start drug development. Through this kind of partnership, biotech firms might share their "libraries" of experimental compounds, Parkinson says.

The NCI could help coordinate trials, and companies could keep the right to sell successful products. The partnership, acting like a non-profit corporation, could shepherd drugs through the approval process, then commercialize them.

"We will need someone to drive this process, to say, 'Our mission is to develop new cancer drugs for children,' " says Peter Adamson, an editor of the IOM report and chairman of the developmental therapeutics program of the Children's Oncology Group, a national research consortium. In the case of abandoned drugs, the IOM report calls on the NCI to step in as "developer of last resort."

Families say they are willing to do their part. Nearly half of child cancer patients participate in NCI-sponsored clinical trials, compared with only about 4% of adults, Smith says.

Max's mother, Sue Levine, says she's counting on scientists to come up with new drugs. Experimental therapies have given Max two years. Although 131I-MIBG stopped working after six months, it kept the Cherry Hill, N.J., boy alive long enough to become eligible for another experimental drug, which has controlled his cancer for a year and a half.

"The fact that my son is here playing with his GameBoy is a miracle," Levine says. "If my son can give these doctors some knowledge, he's willing to try it."

-- Posted on Tuesday, July 19 2005

Good morning

We had a good time at the fair this weekend. The kids rode the ponies in memory of Erin. We really missed her this weekend, I feel guilty at first then sad when we go out and do family things. I'm not sure that will ever go away.

Luke told me yesterday that he wants to be done with swimming lessons. I knew he got scared last time. I just hope he doesn't become to fearful of the water. I don't know which would be better for him, take him out until next year, or make him go thinking his fear will be overcome.

Chris has a big tubing/camping trip planned this weekend. He is planning on taking Grant with him. Temperatures are going to be close to 100. Luke doesn't seem to mind staying home with me and Laura. I will probably be canning corn this weekend. Canning for this year started yesterday with four quarts of pickles. I can't wait for those tomatoes to ripen up so I can get started on those.

Thank you God for the rain, we finally got some on Sunday night. It looks like its going to be a while before we get anymore.

Stay cool this week!!

The Bettenhausens

-- Posted on Friday, July 15 2005

Good morning

I would like to start off with a memory of Erin this morning. Yesterday Laura was digging thru her closet and found Erins make-up(make-uck as Erin said it) box. It wasn't anywhere she could reach it but threw a tantrum until I let her look at it. When Erin was alive she would sit at the kitchen table and mess with all her goodies, with little Laura watching from the side, not able to touch anything! These were Erin's girly things and very precious to her, Laura was just the little sister trying to get in the way. Erin, I hope you are not mad, that I gave it to your little sister. She has been taking very good care of it. When she is done playing she is careful in making sure everything gets put back. I make her sit at the kitchen table just as Erin did. It has real make-up in it, kid stuff, very bright colors that wouldn't match the carpet. Erin I wish you were here to share with Laura your own make-up, dress-up was always fun with my sisters, it makes me sad Laura won't get to experience that with you.

Well we gave in and have already taken the kids to the Platte Co. Fair. Laura was so excited so see all the lights, and RIDES! Its difficult getting her off when the ride is over. She doesn't fully understand whats going on.

The boys had swimming lessons again yesterday. Luke is so scared to go under the water, he said he is afraid he won't come back up. I could see the look on is face, he about started crying. He did it anyway and was very proud of himself for what he did do, although I don't think he followed thru with the rest of the instructions, he was worried about getting the water out of his eyes. He has agreed to go back which amazes me, he also said that this weekend he would practice at home in the pool.

As for this weekend, just a few "fair" events. The rodeo tonight at the Madison Co. Fair. The boys like the bull riding, they are hoping to get to do the mutton busting, which is riding sheep, for those of you that don't know. I just talked to my mom and she said they drew Grants name last night to ride, hopefully they can work it out and enter his name again in the drawing since we didn't make it last night.

Well I have be typing for to long and its time to do the housework, and yardwork. Thanks for visiting and have a good weekend.

-- Posted on Wednesday, July 13 2005

Good morning

What a week it would be to be a kid again. We have two county fairs going on within about 40 miles of each other. The boys are very excited about this. This morning I overheard them discussing which rides they were going to ride on this year. Grant is hoping he is tall enough for the bumper cars. Luke said he can't wait for the cotton candy!

Last summer Erin got to enjoy the fair along with the other kids. She got to do one thing, that Chris and I both think was on her to do list before she died, and that was to ride a horse(pony to be exact). Horse were her favorite animal. I can still see that huge smile of hers as she was sitting on top of the pony. On our way to swimming lessons yesterday I reminded the boys of Erin at last years fair and how much fun we had. Grant said that he is sure Erin has her own pony up in heaven. Luke wanted to know if there were "fair rides" up in heaven, then stated that if there were, Erin got to ride them whenever she wanted. I just agreed with them. I like to think heaven is everything and anything we want it to be. Grant said he wants to be old when he dies but be a kid again when he gets to heaven. They ask ME if all of this is possible. What do you think?

Erin if you can send us some rain, Please! I am tired of watering the garden and lawn.

Thanks for visiting,
Chris Holli and family

-- Posted on Friday, July 8 2005

Afternoon

I thought I would update one more time this week, although not much has happened this week. We just got back from a day at Grandpa and Grandma house. They have their hands full. They are watching my sisters kids for the weekend. How easily they forget what its like to have kids. I think they are just used to sending them back home with their parents when the day is done. My youngest sister was there with her little one. I don't get to see them much, her little guy is getting so big.

Yesterday I took down a picture of Erin and the boys. She didn't look very well in it and it always seemed to make me sad when I looked at it. No picture should make you sad, but this one was taken about three days before she died. I could see the pain in her eyes, and I was tired of looking into that picture and thinking about if I had done all I could to keep her comfortable(pain wise). So its gone and I am not going to think about it anymore, well for a while until I run into that picture again.

It feels as though summer is half over already, We are trying to get the boys geared up for school. We talk about what its going to be like for Luke to be at school all day. He is really excited and keeps reminding me that we need to buy him, his uniforms. The house is going to be nice and quiet for about a month, then the new one will be out and crying.

I should wrap this up, its Friday and I would like to have the house somewhat clean for the weekend. Thankyou for visiting Erin site, and thankyou for the guestbook entries they really mean a lot to us.

Chris, Holli, and family

-- Posted on Tuesday, July 5 2005

Good morning

Well, we all survived. No major burns, good food, good company, but a huge lack of sleep, and everyone still could use a few more hours.

We all thought of Erin this weekend. We sure do miss her when the family gets together. That glowing little smile was missing. I wonder what fireworks look like from heaven?

I got out some baby pictures of Erin last week and tried to think about what it would be like now if that perfect little girl in those pictures was still here. How good would she be talking? Would her and Laura play dolls together just as the boys play with army men? How would Lauras life be impacted by having an older sister around? All questions I will never get the answers to. I am ok with that.

Time to fold some laundry and break up the arguing going on upstairs. I wish my entires could be more interesting but this is our life without Erin, no doubt she brought happiness and wonder to us. And without her life seems a bit more monotonous.

Enjoy your short work week!!

Holli

-- Posted on Friday, July 1 2005

Good morning

Big holiday weekend coming up, drive carefully if you'll be on the road. Be aware of each other when lighting fireworks! So far no major burns here(knock on wood). We don't have any definite plans for the weekend. Which is good. We like to keep our options open. The last two Fourth of July holidays were spent with Erin in the hospital, and the other kids had to spend it with extended family. It will be nice to be together this year.

My doctors appointment went good. I didn't gain any weight this time. The baby is still in the same postion it was last time. He was moving all around, the doctor noted what an active child it was. I go back again at the end of July.

The kids spent most of the day with Grandpa and Grandma, they stopped by early yesterday morning and decided to take the kids with them. I had about four hours to myself. It was almost boring, got some laundry folded and watched some T.V.(it wasn't cartoons either) I got ready without any children bothering me for this and that. What I wouldn't give for that today! Its been teasing and fighting and yelling all morning. I am now paying for all the quiet time I had yesterday!! So this is where I have to end for today, the boys are fighting and Laura is trying to get in on the action.

Have a safe and happy fourth of July

Holli

-- Posted on Tuesday, June 28 2005

Good morning

I meant to update yesterday but when I stepped outside, I noticed the lawn needed to be mowed, the kids pool needed cleaning and refilling, and then after I mowed I watered the lawn to. We have underground sprinklers, but there are a few spots that it doesn't reach so good. Then after that it was lunch time and then my sister and her two little girls stopped by. The boys were invited to stay overnight at their cousins house, all day yesterday they were saying how they didn't want to go, but at the last minute decided they DID. So I hurried up and threw some things in a bag for them and they were out the door. Poor little sister Laura was lost without them for a while. She cried so hard when they left. Screaming out their names, you would think she would like a break from the teasing and torturing. She got over it and enjoyed all the one on one attention from her daddy. She can play just as rough as the boys. Its been very quite here this morning without them.

I have a doctors appointment on Thursday. It seems like I was just there, so I guess that means it going by fast. This last week has been a HOT one, very uncomfortable. I am looking forward to this fall, and claiming by body back as my own.

Memory of Erin...Last year when we would get home from radiation she would see the other kids playing in the pool. Her port was accessed so she couldn't get it wet. We ended up buying her a little pool of her own, so that she could have clean water and have it not very deep. Her nurses also gave us these waterproof bandages to put over her port so that it wouldn't get wet. Erin never was one for splashing so she mostly just sat in the water and played with her little mermaid doll. She still had fun, not matter if she couldn't swim with the other kids. Most of her life was spent making the most of what SHE could do.

Laura is seeking my attention, without the boys there is no body else.

Holli

-- Posted on Friday, June 24 2005

Good morning

I am so mad this morning, one of our dogs chewed off my pickle plant, she pulled the roots completely out of the ground. There were so many little pickles on it. She won't be allowed out of the kennel for a while.

Erin made her presence known the other day. I was trying to find some paper work for a bill from over a year ago. You see even though Erin has been gone for 8 months we are still getting harassed from bill collectors for her various treatments and doctor visits. Anyway I was searching for different insurance papers and ran into a CD/song that was written for Erin. During those first few months in the hospital we had a chance to send in some info on Erin to this foundation I guess you would call it, called Songs of Love. They are out of New York. So we had a song made especially for Erin, about Erin. I haven't listened to it since I found it. Not that I don't want to, but I remember it being very "cheesy" shall we say.

I also found a bag with her hair in it. I thought I had lost it. It was from when we were up in Minnesota starting her treatment. They put a port in her brain and shaved off the area they were working on. Her hair looks so soft and delicate, compared to what grew back, all coarse and thick, but always blonde.

Just when I start having one of those "miss you" days, she shines thru and lets me know she is all around us. We love you Erin!!!!!!!!!!!!!!

O.K. so now we are down to counting the hours until the firworks go on sale. But these naughty boys are not going to be getting any unless they start to get along better. Which leads me to my next project, working with Grant and Luke, we are doing some summer home schooling, just so he doesn't forget what he learned. Grant is also learning to tie his shoes better. They don't like to stay tied for him. So time to wrap this up, and get to work. Have a good weekend.

The Bettenhausens

-- Posted on Wednesday, June 22 2005

Good morning

So summer is officially here. You know thats one of the best things about living in Nebraska, as most of you would agree, its the four seasons we get to experience. Just when you get bored with one, wait a couple of weeks(or hours) and the season will change.

I have been meaning to say a BIG thankyou to Camille and Lara for the cards sent to the kids they love getting mail, and were very surprised to see something just for them. They wanted to know who you were so I showed them your website. Like most kids they looked at the screen for about 3 seconds and ran off back to what they were doing.

The grass needs to be mowed today and I have be instructed to plant more onions in the garden. So I can stay much longer. Thanks to Erin for visiting my dreams again last night.

Holli

-- Posted on Monday, June 20 2005

Good morning

Lots of swimming, playing and tired little bodies this weekend. Thanks to Grandpa and Grandma B. for putting up with us and letting the kids swim over there this weekend.

I was thinking about Erin this morning. Mostly about when it came to a decision about what to do when we found out her tumor hadn't shrunk any from the last round of radiation. Chris and I were on opposite sides then. He said he wasn't ready to give up, I said I was ready for God to do his will. So many times we held our breath and hoped that "the cure wouldn't kill her". We got lucky and she always came thru all her chemo and radiation treatments. The infections that followed these treatments were not as easy. This brings me to a little boy named Cole who is fighting very hard to beat a infection that was basically brought on by chemo. He to has Rhabdoid, and his family was recently told that it might be impossible to completely clear him of the infection. You can read his story thru the Rhabdoid Kids link.

THIS WEEK- So far nothing planned, but that seems to change almost as fast as I say it.

Trying to get our plans in order for the Fourth of July, the days are getting counted down. Grant and Luke are looking to make a few $$$ so that they can buy their own fireworks.

Laura just peeked her head around the corner down her, Time to change that overnight diaper, and get some breakfast. Thanks for stopping by, try and keep cool this week.

Holli

-- Posted on Friday, June 17 2005

Good morning

I have to say something for my husband since he never updates, I know he is thinking GO Huskers at the College World Series in Omaha this weekend. They actually play tonight, so good luck to them. It's a father's day weekend so I will have to tolerate a weekend filled with baseball.

The boys got a much needed haircut this week. I want to get mine cut too. The weekends are the only time Chris is around to watch the kids, but my sister doesn't cut hair on the weekends. Maybe I can bribe her?

Laura and I were lying in my bed this morning, yes I was in bed late, but I had gotten up earlier but was feeling dizzy, almost sick to my stomach so I laid back down for a while. Anyway, there is a picture of Erin in her Easter dress from two years ago. It sits on the nightstand next to our bed. Laura looked at it this morning and said "Oh look, War Wa" which means "Laura" only in two year old talk. I told her no, thats your big sister Erin. She just repeated her name and gave me a puzzled look. Yesterday though we were looking at some pictures of all the kids together and she knew right away which one was her and which was Erin. Erin was the first one she pointed out. We look at pictures of Erin alot, I don't want her to forget who she is, what her name was. I am constantly reminding her of her big sisters favorite toys and clothes she wore. I know she won't ever remember having Erin alive. But I don't want her to realize one day and say who was this, or forget her name when I point to a picture of her(Erin).

Its awfully quite upstairs, Laura was playing with play-doh when I started this. Hopefully she not eating it. Time to go.

Holli

-- Posted on Monday, June 13 2005

Good morning

This weekend was filled with thoughts of Erin, mostly because we were in Omaha over the weekend. That was where she did all her treatments, surgeries, clinic visits and radiation. It was the first time since Erin had died that we have been down that way. We drove down those same roads traveled so many times. It really didn't upset me, I can't say I miss that hospital at all. Just brought back lots of memories for both Chris and I.

Our whole reason for being down in Omaha was to take the kids to a Renaissance Faire. We had a great time, although Laura was scared of the people dressed up and in character. Grant and Luke were knighted by the king. I don't think they know what that meant. We walked away that night with mud on our shoes, three wooden childrens swords(one for each including Laura), and a history lesson of 14th thru 17th century Europe(sort of).

We were back at home on Saturday afternoon. The lawn needing mowing and my house got a good cleaning. It was just enough time away, we could have a good time and still get done what we needed to.

This week we only have a few commitments. I would like to remind everyone of Father's day coming up.

I now have to cut off right here, Laura is begging to go swing.

Later

Holli

-- Posted on Friday, June 10 2005

Is it really Friday?

This week seems to be dragging along. Maybe because we started out the week nice ans sunny and hot, and now its rainy, cloudy, and gray, just plain old BLAH! But we needed the rain my garden was getting a little dry.

Another Rhabdoid child has entered the gates of heaven. I had been checking on him often, for so long he struggled with pain. Now he is resting ever so comfortably in Gods arms. Bradley's family will miss him so much, please give an extra thought or prayer today for all families dealing with is disease.

I'd like to say we have great plans for this weekend but the rain might have changed all of them. We are just going to take it as it comes and make the best of it.

I asked the boys to come up with some names for the new baby so far we have "hotdog, cocoa and Jaka" I don't think any of those will be in the running.

Erin we will be thinking of you this weekend as usual. Chris asked me the other day if I had been thinking of Erin lately. I asked him, what do you mean lately? I think of her everyday. I'm sure he meant more throughout each day. Yeah, some days she is on my mind all day/night.

I hear Laura getting teased and picked on upstairs time to go. Have a good weekend!

Holli

-- Posted on Monday, June 6 2005

Good Morning

Remembering Erin...One year ago we were once again traveling everyday to Omaha for radiation. Chris and I would trade off every other day. I think back to those days, getting an extra early start because they were working on the road between here and Fremont. Erin hated when we had to stop for construction. We took the little traveling T.V., I remember she would watch Arthur(show on PBS), then ususally "A Bug's Life", or "Barbie Nutcracker". Most days we would get in late for her radiation because the people before us were late. I hated to watch her struggle and cry as they put her off to sleep for her treatment, but knew it was necessary for her survival. The recovery was the best part because we knew we would be leaving soon after. The nurses were some of the best around and they took a liking to Erin. They tried to make her and I feel as comfortable as possible. Thankyou again for everything you did for Erin.
Our trip home consisted of a slush from Burger King with a hamburger, Erins favorite. She was always hungry afterwards, because she had to be without food or drink before radiation. I have to admit we cheated a little. How could I deny my childs cries for a drink or something to eat. Her life had been denied too much in the past. Besides she never did get sick from eating beforehand. Turning the corner,returning home, was probably Erins favortie part. She would get so excited, it was probably her most happiest moments, coming home, no matter were we had been. I suppose she had that same enthusiasm and big smile the day she entered Heaven.

We miss you Erin, the heat and humidity outside this morning made it smell like one of those radiation days last year.
P.S. Chris' days were a little different he had his own routines with her, but I know he cherished them just as much as I did.

Holli

-- Posted on Friday, June 3 2005

I only have a few minutes so this will be short I just wanted to let you all know how the doc appt. went. Well everything looks great. The baby is growing and measures right wear it should be. We are now at the half way mark only 20 weeks to go. We also found out the sex of the baby, something we had never done with any of our other children. It was sort of and accident. Chris said he wanted to see for himself to see if he could tell what it was, before they told us. It was so obvious, I saw it right away, a BOY!! Chris really wanted a girl, he and I both feel cheated out of one. No, we don't think we are replacing Erin. He became very partial to girls. Maybe its the age but when Chris walks thru the door after work Laura is waiting to run up to him and give him a huge hug and kiss. The boys on the other hand just have something to complain about. Nevertheless we are very excited to be having another boy. It's been five years since I have had a little boy. We couldn't get a good look at the face yesterday the baby is lying across me with its face to my back. I guess it wants to leave something a surprise. Now I can start finding boys names and clothes, the clothes Grant and Luke went thru are trash material.

Well its time to go the boys are going upstairs and I am on duty. They have a cousin over and three is sometimes a crowd, they like to leave the youngest boy(Luke) out. thanks for visiting and have a good weekend.

Holli

-- Posted on Tuesday, May 31 2005

Good morning

Well from the way things are going this morning you would think that I have two teenage boys in this house. Between the two of them taking showers this morning there is no hot water left. After Luke was done he sat in the bathroom combing his hair for ten minutes. Grant has moved on to bigger things he wants "that perfume that Dad wears", and to use big people toothpaste(minty kind). Then its on to lotion all over his body, a good hair combing, and finally getting dressed. He looks to my approval, I only wish he would act this grown up all the time, with a few minor adjustments of course.

Erin had more flowers on her grave than I expected. Grant took a picture that he drew for Erin, and he also insisted on taking some candy for her. We all miss her so much, its just not fair. Thanks to all the family and friends that visited Erin, thankyou for remembering.

Well, we have things to do today. Sorry for the short update.

Holli

-- Posted on Monday, May 30 2005

Good Morning

Here we are back home again after a long weekend. Luke has come down with something. Probably from the lack of sleep this weekend. We plan on visiting Erins grave today, I want to take her some of her favorite flowers. Then I suppose we will just come back home and catch up on house work.

This cold weather doesn't make you feel like getting out and about.

I'll check back later this week.

Holli

-- Posted on Tuesday, May 24 2005

Tuesday

Wow its finally here, Grants last day, not even a whole day just church this morning. That means no more fights in the morning to eat breakfast in a timely manner. No more fighting about getting dressed, and the complaints about something not fitting right. The grouch monster can take a vacation for a few months, until school starts again.

It sounds like this weekend is going to be cooler than expected. No swimming here! If you go camping be sure to have a warm blanket and plenty of firewood.

The rest of our week is free. I have to do a bit more planting. Those darn rabbits keep eating my cabbage plants. Not to fear though, Grant and his genious mind decided to catch a rabbit. He talked his dad into creating a rabbit trap. I don't know how good its going to work(its just a cardboard box and a stick). Hey, it works in the cartoons.

I had a dream about Erin the other night, not a very good one. She died in my dream but the strange thing was we already had, had two funerals for her because we knew she had be dying a little at a time. I can't even begin to explain last nights dream.

Enough already, right! I need to wake the other two kids so that they are ready to go get Grant. Oh and by the way the three toads were set free on Friday.

Later

Holli

-- Posted on Friday, May 20 2005

Friday!!!

I know I just updated yesterday, but I found this poem the other day. I liked it because it showed maybe a glimpse of why this(Erins cancer) happened to me. I hope you enjoy.

The Chosen Mothers
by Erma Bombeck

Most women become a mother by accident, some by choice, and a few by habit. Did you ever wonder how mothers of children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger...

"Armstron, Beth, son, patron saint Matthew" "Forrest, Marjorie daughter, patron saint Cecilia" "Rutledge, Carrie, twins, patron saint Gerard."

Finally, He passes a name to an angel and says "Give her a child with cancer." The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel."

"But does she have patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she will handle it."

"I watched her today," said God "She has that feeling of self-independence that is so rare and necessary in a mother. You see, the child I'm going to give her has its own world. She has to make it live in her world and that's not going to be easy."

"But Lord, I don't think she believes in you," said the angel "No matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness, is that a virtue?"

God nods, "If she can't separate herself from the child occasionally she'll never survive. Yes here is the woman I will bless with this child. She doesn't even realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them."

"And what about her patron saint?" asks the angel, his pen poised in mid air.

God smiles and says..."A mirror will suffice."

-- Posted on Thursday, May 19 2005

Good Afternoon

Its been busy the last few afternoons. Grants been visiting friends and we have had a few at our house. Two of my sisters stopped by yesterday with their kids, and we had a full house. Its good to get together, yes Chris lots of gossip, and complaining. Yeah right. We were busy keeping the kids happy and outside!

Grant is getting a collection of all kinds of critters. First it was a snake, then a moth, next a stag beetle, now three toads. Just this afternoon another snake. We have just the three toads in captivity right now. Once he gets bored with them he will let them go. He takes good care of his "pets" while they are with us, OUTSIDE of course.

We have the last soccer game for this spring on Saturday. I know Chris is ready for a break. We have been wanting to get away on the weekends, hopefully next weekend(Memorial) we will get that chance. Other than the game in the morning, we don't have much planned, the usual, mowing, gardening(weeding), and church on Sunday.

My roses out front finally opened up. I immediately thought of Erin. Her pink roses are ready to be picked. I would like to take a few out to her grave, just to brighten things up.

Miss you everyday sweetheart, wish you could smell the roses with us. We love you Erin!!!!!!!!!!!!!!!!!!!

Time to get going. Have a good weekend.

Holli & family

-- Posted on Monday, May 16 2005

It's Monday!!!

Back to the same old same old. Grant is counting down the days until he gets out of school for the summer. Not that he didn't like school, he is just looking forward to watching "Little House on the Prairie" in the morning, going to Grandpa's Ranch, and one of his favorite holidays the Fourth of July.

Luke will be done this week, he is always going with the flow, and doesn't say much about his school. So I don't what he is thinking.

Laura, well, she is to little to know much at all, we do alot of swinging outside and when I go to water the dogs(turn on the hose) she is right there just waiting to get wet.

Chris and I would like to say we did something fun and exciting this summer. Too many years of not really going on vacation, always saying we are going to and never doing it. I hope to let go of some the work that needs to be done around here this summer so that we can enjoy ourselves. The kids won't be little forever.

Mid-May already, my next doctors appointment is coming up soon(June 2nd). The baby has been giving a few good kicks here and there. Its nice to have those reminders of the little one growing inside, aside for my big belly in front I mean. The boys get really excited about the baby when I starting telling them about what it will be like when its here. How much fun we are going to have, and how much work it will be. Grant graciously takes over and says how much he is going to hold the baby and feed it, give it toys and teach HIM about bugs and snakes. We don't know what it will be, nor are we going to find out. Grant says "well I sure do hope its a boy" Luke says "yeah we already have enough girls, we have Erin and Laura, oh and you mom" He is right its fifty fifty now, this baby will be the tie breaker.

I've just noticed I have been on this computer way to long this morning. I need to get some housework done. Thanks for visiting.

Holli

-- Posted on Friday, May 13 2005

Good Morning

When you have so much going on during the week it sure seems to go fast. Grant has graduated Kindergarten but continues to go to school, Luke is ready to go to kindergarten, his physical went well, he didn't want to cry when they gave him the shots but did anyway. What a tough boy. Grant and Laura waited out in the waiting room together. Grant was such a big helper that day. Then last night Grant had a spring concert. No plans for tonight which is a good thing. Another 8:30 game tomorrow morning for Daddy and Grant. Our poor lawn is so long, it will take most of the day tomorrow to mow it. All this rain has been a blessing, so I won't complain. Just before it started raining I got the backyard mowed and planted tomatoes, peppers, and cucumbers. They all survived the storms and the backyard is ready to be mowed again!

I just realized its Friday the 13th. I would have to say I am somewhat superstitious. On that note, I'm glad I have nothing planned for the day.

Last year at this time we well were on the road to recovery with Erins second brain surgery. She was out of the hospital 2 days after surgery. What a strong little girl. We knew what a reoccurence meant but believed that Erin could make it thru anything. She lived longer that most children with Rhabdoid. For that I am greatful, if for nothing else it was for God allowing her to be so strong and fight for 18 extra months. We could easily not have had that time. We all miss you so much, just last night at the dinner table Luke and Grant both expressed how they miss you too.

Thanks for visiting

Holli

-- Posted on Monday, May 9 2005

Good morning

I have to start off by saying Happy Anniversary to my wonderful husband. They say the first seven years are the hardest. We have been through what I believe were some of the most difficult times. But it only made our relationship stronger. Thankyou for always being there sweetheart, especially as an ally during Erins most darkest days. I love you.

OK enough mushy stuff, as the kids would say. The weekend seemed to go on forever. You would think it it would have just flown by, with all the things we had planned. So here we are its monday and I have a ton of laundry to do so this update will have to be short. I constructed a temporary laundry line for outside. I miss the one I had at the old house. It was always nice to sleep on sheets that had been hung outside.

Luke has his Kindergarten Physical tomorrow. He hasn't said much about it. Probably trying not to think about it.

Grant has his Kindergarten Graduation tomorrow night. I hope he participates. He is a little like me when it comes to standing up in front of people, you really don't want to be there, you feel akward and then you freeze. I will be crossing my fingers.

Have a good week I'm sure I will update sometime later this week.

Holli

-- Posted on Friday, May 6 2005

Good morning

Its one of those few and far between days that I woke up feeling like I got enough sleep. Most mornings around here I have to drag myself out of bed and then push myself to get things done. Not today full of energy, so far.

My doctors appointment went good. I get so excited for those, I love to hear that heartbeat pounding away.

I stopped by Erins grave yesterday on my way back home. All the kids had fallen asleep so I got a chance to have a few quite moments. Anyway, they have mowed the grass out there so everything looks good, there are a few flowers out there. All she needs is a headstone.

Well, we have graduation parties tonight, Grant has a early soccer game tomorrow, then later that day we have a wedding to go to. Sunday I will be looking for breakfast in bed, right? Just kidding Chris.

Time to go, demanding Luke is now ready for breakfast.

Holli
UPDATE ADDED
A poem I found and would like to dedicate to mothers who have lost a child.

My Mom is a survivor, or so I've heard it said
But I hear her crying at night when all others are in bed.
I watch her lay awake at night and go to hold her hand.
She doesn't know I'm with her to help her understand.
But like the sands on the beach that never wash away...
I watch over my surviving mom who thinks of me each day.
She wears a smile for others...a smile of disguise.
But through Heaven's door I see tears flowing from her eyes.
My mom tries to cope with death to keep my memory alive.
But anyone who knows her knows it is her way to survive.
As I watch over my surviving mom...through Heaven's open door.
I try to tell her that angels protect me forever more.
But I know that doesn't help her or ease the burden she bears.
So if you get a chance, go visit her, and show her that you care.
For no matter what she says...no matter what she feels.
My surviving mom has a broken heart that time won't ever heal!

-- Posted on Wednesday, May 4 2005

Good morning

Finally some warmer weather.

Luke is done with school until next week, so Laura and I won't have our quite morning(yeah right!) tomorrow. Thats ok, we will be to busy getting ready for the rest of the day. The kids get to spend the day with Grandpa and Grandma. I'm looking forward to a little time by myself. These once a month trips to the doctor is all I have.

No more high school soccer! They lost last night so they are done for the year. Finally Chris will be home after work. I know he is a little sad, he enjoyed it and made a few new friends along the way. MAYBE next year dear.

I will probably remind you again later, but Sunday is Mothers Day. Don't forget to tell your mother how much she means to you, also tell her THANKYOU for everything she has done for you.

We have got a few big days coming up. May 6th two years ago Erin had her first surgery. May 9th diagnosis of Rhabdoid, confirmed a few days later. May 9th is also our wedding anniversary, this year makes it seven years. But before that I will have to celebrate my first mothers day without Erin.

Nervous about the big weigh in tomorrow,

Holli

-- Posted on Monday, May 2 2005

Good morning

Wow what a morning its been already. Laura was up at the crack of dawn(5:30 a.m.). Luckly she stayed in her bed until 6:30. After that she was up running around singing and dancing. Just an ounce of that energy sure would be nice to have, especially so early in the morning. She didn't go to bed until about 10:30 last night. Oh I tried to get her there earlier than that but she kept sneaking out of her room over and over again. She is still in a good mood I can hear her singing upstairs.

Chris has a soccer game on Tuesday, hopefully the last one for the year, Right Honey!?!

I have a doctors appointment on Thursday. The kids will go to my parents house, it should be nice outside so they will get to run around the farm. They are looking forward to this summer when they can stay overnight there. Grant likes to help out with doing the animal chores. He often tells me he wishes we lived on a farm. I couldn't agree more.

Well what do you know I have just been joined by my little rockstar, and I see she is bottomless, time for a new diaper. Yes she is still wearing diapers, my mom tells me all the time, "I had all you kids potty trained by the time you were 18 months old" We have been working on it, but I have new carpet in my living room and we have already had accidents I don't want more. This summer when we are outside I am hoping to really get to work on the potty business. It makes it a little difficult when Laura sees the boys go to the bathroom, she thinks she needs to stand to. She will be the first girl I will be potty training, poor Erin never had the chance, always being sick. Any suggestions would be greatly appreciated.

Thanks for stopping by today.

Holli

-- Posted on Saturday, April 30 2005

Good Morning

HAVE A GOOD WEEKEND!!!!GET OUT AND ENJOY IT!!!

WE MISS YOU ERIN. IT SEEMS LIKE FOREVER SINCE I'VE HELD, KISSED OR SMELLED YOU. 6 MONTHS HERE AND GONE. WE WILL LOVE YOU FOREVER....WE WILL NEVER FORGET YOU.......-MOMAND DAD

-- Posted on Wednesday, April 27 2005

Good morning

Last week when Luke and Laura were celebrating their birthdays the boys asked me if Erin was going to be four this year. They also wanted to know if they would have a birthday party with cake, up in heaven. I just told them that they probably would. I hate to think of my little girl growing up without me seeing her. I think she will always be that sweet little three year old.

I wish the weather would straighten out. The sunshine in the morning is deceiving. So cold, but it could be worse.

My wrist is finally functional again, but every once in a while I will lift something up and a sharp pain will surge thru, only lasting a second, but ouch!

Not much else to report, unless you want to hear about my crazy dreams I have been having about this baby. You probably don't. Thanks for visiting.

Holli

-- Posted on Monday, April 25 2005

Good morning

The relay for life cancer walk seemed to be a good turn out. It was cold and the kids didn't last long. Sadly it looked as though there were more names than last year. I have to admit I was a little hesitant at first about going, I wasn't sure how I was going to react(pregnancy hormones and all) when I saw Erins name on those luminaries. It was sad not having her there with us this year.

Grant did not win his soccer game Saturday morning. He wasn't upset, he said he tried hard, hey, thats what I like to hear.

We took a road trip with some family on Sunday and had a good time. Chris is already planning a camping trip for next weekend. As you could tell I never got him talked into going this weekend.

I finally made Luke's appointment for his kindergarten physical. I haven't told him about the shot he will receive. His big brother Grant has done that for me.

I got some good info on picking out headstones from other Rhabdoid families who have lost children. Hopefully we can start looking soon.

Time to run, I have to have lunch ready when Chris brings Grant home from school.

Holli

-- Posted on Friday, April 22 2005

Hello

Well today, actually tonight is the big cancer walk here in columbus. We don't have team put together for Erin we have just a few luminaries for her. We question where the cancer society is spending the money so we prefer not to donate to much. I would rather give it to a specific Rhabdoid research foundation like the one at Columbia University, which is just up and running. There are pictures of last years walk in the "Pictures" section of Erins website, I believe it starts at number 45 and so on.

Next friday will be the 6 month anniversary of Erins death. It was also last year on the 29th of April that we discovered a new tumor growing in the occipital(sp) lobe of her brain.

I am hoping that after Grants game tomorrow we can get away for the rest of the weekend. Just to do nothing, the boys haven't seen much of their Dad this week and I think we could all use some family time again. I just can't get enough. Its still all in the works and I have to convince Chris the yard work can wait.

My sister is going to be stopping by this morning so I need to finish cleaning up a bit. Later

Chris and Holli

-- Posted on Wednesday, April 20 2005

Good morning

Happy Birthday Laura(LouLou)! The Big 2, the terrible two's have been here for about 6 months now. She doesn't even have a clue that its her birthday. Next year will be better. I will be busy today catching up on laundry and baking more birthday cakes.

What a great rain we had again last night. Although our lawn needs to be mowed something terrible we are grateful for the rain.

So we have a new Pope, so much spectulation being put out there by the media on what kinds of things are going to change and how its going to be. Give the guy a chance!

Since Sunday Grant has been telling us he wants to be a priest when he grows up. He stated he will be changing his name to Father Joe. He asked me if I could go to wal-mart and buy him some holy water so he could bless us when ever he wanted. On monday night he wanted me to make "some of those circle things father has at church that he eats" his exact words. "Don't forget the wine too!" I think that its great, I hope someday he fulfills his dream and becomes a priest.

Well Laura is finally awake, time to make a birthday breakfast.

Have a good day

Holli

-- Posted on Monday, April 18 2005

Good morning

Lots to do this week. We have two birthdays to celebrate, and I have to help butcher chickens with my sisters. I think Chris has 3 soccer games this week for the high school not to mention practice one night with the little guys and then a 8:30 a.m. game on Saturday. We won't be seeing much of each other this week.

Luke is still asking me when he gets to go to kindergarten again. If Erin had never been sick she would have been old enough to start dance this year. Even if she were here yet I think the damage to her brain from all the surgeries would have held her back in all sorts of areas thats why I say "If" she had NEVER gotten sick. I don't know if its healthy or not but sometimes I like to imagine what our life would have been like without cancer.

I hurt my wrist this weekend, working on the flagstone path that we put thru our backyard. Of course my mother thinks I need to go to the doctor "look how swollen it is" she says. I will give it a few more days, it wasn't used to being used so much.

Well I need some coffee so its time to go.

Holli

-- Posted on Thursday, April 14 2005

Afternoon

I just wanted to let everyone know about the Relay for Life Cancer walk next week, April 22. We will be out there making laps in Erins memory. I can't wait, Erin and Laura were with us last year. It was alot of fun, besides I could use the exercise.

Laura is starting to pick-up some of Erins girly qualities. She has been carrying a bag full of doll clothes, a necklace, a pretend hair dryer, and sunglasses for the last two days. I'm not sure how long this will last. It nice to see though.

Lukes teacher said today that he has been inviting his classmates over for his birthday next week. I have a feeling Grant is going to be a little jealous, he is already asking who he gets to invite. You see, according to Grant, Lukes friends are all to little to play with, he needs to have a friend over because they are bigger. Yeah right!

Not much else to report, can't wait the weekend as usual. Grant has a soccer game bright and early Saturday morning. Then we will be finishing the yard work from last weekend.

Thanks for stopping by!

Holli

-- Posted on Monday, April 11 2005

Afternoon everyone

Finally have some time to journal today although I might be cut short Chris is going to try and have soccer practice for the little guys tonight. So that means I have to have Grant ready to go soon. They lost their game on Saturday 7 to 6 so it was close. Laura wanted to get on the field and play too, so I had to fight her most of the time. I think I will get a babysitter next time.

Chris and I went out to dinner on Saturday night with my brother and his wife. We hardly ever get to see them, don't know why just happens that way, so it was nice to spend so time with them. Chris and I looked like a couple of lobsters though. We worked on the yard all afternoon and got sunburnt. Sunday was pretty quiet it was to rainy for our family outing so we stayed home grilled steak in between rain showers and watched t.v.

These severe thunderstorm watches reminded me of when we were in the hospital with Erin that first year. It was so stormy in 2003, there we even tornado warnings when we were there. The only thing you can do when you are in the hospital is move to the middle conference rooms (whatever floor you are on) and hope it doesn't hit the hospital. When there is a severe thunderstorm you have to shut your curtains(shades) in your room. So you can't even enjoy watching the lightning, they don't want you to have any fun in the hospital. Just kidding, I know its for your own safety. Erin was to sick to care what was going on that year. Last year we were just hoping we wouldn't get caught in a storm coming back from Omaha everday for radiation. What a ride that was.

This week should be somewhat calm, no real big plans, but that can change so quickly. My moms birthday is this Saturday, so we will have to visit her this weekend. Luke's birthday is the 19th and Laura's is the 20th so I need to figure out what we are going to do for that. Luke wants a few friends from school over. Laura is to young to care.

Oh, I see its after five, so I need to get Grant ready, thanks for visiting and all the well wishes to us. It really means alot that people still check in. Chris tells me often that, he never wants people to forget about Erin and all that she went thru. So thanks for keeping Erin's memory alive.

Later

Holli

-- Posted on Friday, April 8 2005

Hello

I thought I would give a brief update before lunch.

Luke had Kindergarten Round-up this morning. He was so excited, he said he had a good time and wants to know when he can go back to kindergarten. Grant mean while get to experience first grade ALL day today. Hooray! I don't have to pick him up from school until 3:25. Luke will be lost without him today.

I had a doctors appointment yesterday, doc said things look good and are growing quickly! I know I am jumping the gun but I stared looking at names yesterday, Saints names actually and I came across Erins middle name, Christine, we named her after her Daddy but I found out that maybe it was meant to be because it means: Annointed, belonging to Christ. I thought that was so fitting for her. What special little girl she was, she was briefly in my dream last night, again, this time I got to kiss her cheek, boy, I sure do miss that!!

Plans for the weekend include Grants first soccer game of the season. I don't think he is to thrilled about it. I don't know if Laura and I can make it, she thinks she needs to be on the field kicking the ball around with the kids. So maybe she and I will skip this one, Shopko has a big sale on maternity clothes tomorrow. I don't need them yet, but who can miss a sale?

Well I like to share more but duty calls, LUNCHTIME!!!!!

Holli

-- Posted on Monday, April 4 2005

Good afternoon

I have decided to spend it indoors even though its 80 some degree's outside. My allergies don't permit my eyes to function correctly. They itch and water sooo bad I can hardly see.

We had another great weekend. Grant got his soccer pictures taken on Saturday. He didn't want to go at first but when we got there and he saw all the other kids he happily smiled for the camera.

Sunday we took a drive over to Fullerton, NE. to Broken Arrow Wilderness area. For those of you who have never heard of it or have never been there you can check it out on the web at www.brokenarrowwilderness.com. It was such a neat place. We went hiking and had a snack there, the boys are ready to go back and rent a cabin to stay the night. Erin we sure missed you on our trip, Dad especially, I knew you were there in spirit as you always are.

I just looked at the clock and noticed its after 5:00 already. Its taking me a long time to finish this update. The boys keep interupting. They want to go dig worms so that we can go fishing.

I figure I would reach a bigger crowd by telling everyone that visits Erins site that one more gift from God will be gracing itself with its presence in October. I know Erin has already seen its face, but not having her here to share the good news with breaks my heart, she loved babies so much. We are just praying everthing goes well, with Erins experience we learned life itsn't always what you think it should be, Gods plan is bigger.

I suppose I will go and man the shovel so they can pick up the slimy things. Not sure when they will go fishing though?

Thanks for visiting

Chris and Holli

-- Posted on Sunday, April 3 2005

Did you set your clocks ahead?

-- Posted on Saturday, April 2 2005

Good evening

I guess our plans have changed for this evening, we are going to be staying home. We should have gone to church tonight.

I'm sure you have all heard that the Pope has since died. What a great man he was. I was listening to a story about his childhood, living alone in an apartment with his father, then in 1939 hiding from the Nazi's that invaded Poland. I thought to myself how he got to where he was(the Pope). A highly intelligent and compationate(sp) man. He was fluent in 8 different languages. He was the Pope of my generation, his reign lasting 26 1/2 years. I no longer have to pray for his peaceful death, I now pray that the next Holy Father will be as great a man as he was.

My Erin is so lucky to be in the presence of such righteous people. We missed her today, all of us outside, working on the yard. The kids playing in the sandbox and swingset. I try imagine her watching us, sitting in the grass just smiling away with that big smile of hers.

Time to make supper, and give the kids a bath!!!

Holli

-- Posted on Thursday, March 31 2005

Good morning

Here we are the last day of March, where does the time go?

Its quiet here this morning. Laura lets me get things done. She's always been the type of child that entertains herself. She was used to being pushed to the side when Erin was alive.

In the book of devotionals that I try to read everyday the author talks about winds of March, how fitting for the last few days. I would like to share a small portion of it with you:

The winds of March are often cruel and blustery. And yet they typify the stormy seasons of my life. Indeed I should be glad to have the opportunity to come to know these seasons.

The storms of sorrow through bereavement are intense, but they are one of the Father's ways of driving me to Himself.

Jesus Christ is not security against the storms of life but He is my perfect security in the storms. He has never promised me an easy passage, only a safe landing.

These were just a few of the many the passages I found I could relate to.

Well I need to get a few things done before its time to pick of the boys from school.

Holli

-- Posted on Monday, March 28 2005

Good morning

WE had a great weekend. Easter was joyous despite the absence of Erin. The kids had a great time playing with their cousins. And as usual I ate to much.

What a beautiful spring day. The kids have been outside since they got up this morning. Grant chose not to go to the birthday party he was invited to. He said he just wanted to play outside with his brother and dogs. Most of my morning has been spent cleaning up after this weekend.

The rest of week should be quiet, just school and work. Chris only has one soccer game this week. But it is an away game and it doesn't start until 6:30. Only one more month to go until he is done. Grant is going to be starting soccer soon to. Chris has taken on the roll of coach, so lots of work needs to be done with that too.

I'm ready for some more spring weather. I would like to get my garden area tilled and ready for planting. All in good time right? Well I better get back to work.

Later

Holli

-- Posted on Wednesday, December 29 2004

Good morning

I know its been a while, forgive us for the delay.

The boys had a great Christmas getting some of the things they asked for from Santa. One of the big gifts they got was a remote control car. Thanks to the beautiful weather outside they have had a chance to play with them. Lauras favorite toy is her "BooBah". For those of you who don't know what that is, its an alien looking fuzzy, dancing, singing creature. They have a show on PBS.

I started taking down some of our Christmas decorations. The real tree we had up died about two weeks ago and all the needles were falling off of it. What a mess that was.

Grant is getting excited about his birthday. He is going to be 6 years old on Saturday. New Years Baby 1999. He has been lobbying for a kitten. Last year he got a dog. Lets just say there will be no new additions this birthday.

Not much else to report. Laundry is calling.

Remembering Erin...
We missed you, Erin this Christmas. I watched your cousin Grace(who is only a few days younger than you) play with Laura, laugh and run around Grandpa and Grandma's house. I thought of how, it could have been you if you had never gotten sick. How our lives would be so very different.

Later

Holli

-- Posted on Thursday, December 23 2004

Good morning

Just to let you know I typed this once already but lost it somewhere in cyberspace. I don't know what happened to it. I am not going to try and retype it all over again. It wasn't anyhting to interesting. I will however give you the name of the book I just finished reading.

Title: Why? (Trusting God When You Don't Understand)
Author: Anne Graham Lotz

It is excellent reading for those who might be struggling with the question of why, something bad has happened to them. Whether its a death in the family, illness, failed marriage/relationship, or financial difficulties. It might even be the question of why, good things have not come your way. If you know someone who might need this book get it for them. If they feel to hurt by God to read it themselves, do it for them. It will help you to talk to them, maybe give them some insight into WHY?

Reach out to each other, thats what we are here for.

Merry Christmas

Holli

-- Posted on Thursday, December 23 2004

Good morning

I am a little late this morning in getting this typed. The boys no longer have school until next year and Chris is off work until next week. We all decided to sleep in.

This afternoon we have the "Krings" Christmas, which includes all my Aunts Uncles and cousins on my Dad's side. There is always lots to eat and fun to be had. But before we go we will be cleaning the house extra good. I just hate coming home to a messy house. Especially when I know we'll have to turn around and go somewhere else the next day. I also have to do some cooking for tommorrow's festivities. I need to make sure everyone has clean clothes to wear. See, boring mom stuff to do today. I'll still enjoy it, it is my job.
*I heard on Dr. Phil yesterday that a stay at home mom works the same amount of time as TWO full time jobs.

One more thing before I go. I wanted to tell you the name of the book I just finished reading. Its excellent reading for those of you who might be struggling with the question of why, something bad has happened to you or why something good has not come to you.

Title: Why? (Trusting God When You Don't Understand)
Author: Anne Graham Lotz

I highly recommend this book to anyone who has lost a loved one or might be struggling with a relationship/marriage or financial difficulties, or sickness. Just about any problems you have in your life in which you might question God with WHY?

Later

Holli

-- Posted on Wednesday, December 22 2004

Merry Christmas!

As we get closer to Christmas please be thankful that you have God, family and friends to spend it with. Christmas is a time of year that gets people stressed out over holiday travel, money they don't have or family that they have problems connecting with. I say put all that aside and enjoy Christmas as it was intended and celebrate the birth of Christ.

Memories of Erin..

I recall last December the 4 days spent at Children's Hospital on a short Chemical therapy run that Santa did appear. We were allowed to venture to the play room for a bit where as soon as Erin would get through the door she went straight to the kitchen set and baby dolls. As we sat playing a jolly looking Santa came through the door and said ho! ho! ho! and scared Erin. After a bit she warmed up to Santa and he gave her a bear but then she turned to Santa and asked for another and Santa obliged. Erin was always a girl that loved to have both hands full of purses, dolls or in this case bears...Thank God we were able to spend Christmas home as a family and not in the hospital that year. My memories of Children's Hospital are very mixed considering I hated being there only because we were not together as a family however the staff is excellent and always tried to make are stay as comfortable as possible

In regards to Chemical Therapy I really have no faith in this. This is not because Erin died but in the manner of the thinking of what is working and what is not when you combine 3 or 4 different drugs in a protocol like the one used for Rhabdoid. I recall a conversation that we had with Erins primary cancer doctor in the first few months. Things were going well and the tumor was “chemo responsive” and we were discussing the therapy and the word “cocktail” was used to describe the combination of different chem agents being given. I recall that Erins doctor said that this protocol is complex and that we really don't know which of the chemical therapy drugs are the most effective so we just keep going. My point is that we through everything including the kitchen sink at ATRT and still will loose to many kids before these doctors will pinpoint which drug works. I see more promise in boosting the immune system with cancer fighting T cells the bodies natural defense against disease. However it boils down to where can money be made. Pharmaceutical companies spend millions of dollars researching and funding trials in hope that they will go to market. Internal review boards at each hospital debate ethics, financial gain and potential cure rates before any treatment can be given. There will be no Inclone for Rhabdoid no specific drug designed just for Rhabdoid where is the finacial gain to be made? Cancer research is like a 8 lane super hiway speeding along but when drugs or treatments show promise the super hiway turns into a two lane traffic jam. That is why i hope that through our God given gift of our bodies immune system that we can fight cancer. With all the technological advances in medicine it still will always come down to the Gods plan for each one of us. So give thanks for Christ and realized that are lives are short but always in his hands.

Merry Christmas We Love you Erin!!

Chris

-- Posted on Wednesday, December 22 2004

Happy Holidays

Its creeping up on us. Are you ready? For wacky relatives, screaming tired kids, deep freeze temperatures, christmas carols, egg-nog(lumpy), and last but not least the credit card debt. DON'T FOGET TO PRAISE GOD FOR GIVING US THE CHANCE TO HAVE ALL OF THIS. He just wants us to love him.

SHOUT OUTS:

Thanks to Amber, this morning I get to go grocery shopping alone. She had one test at school this morning and then she'll be over so I can't stay to long.

Thankyou Deb for the gift basket.

Thankyou Jakey and family for the "Wiggles" stuff and book. Laura is just as big of fan as Erin was.

Thanks to Santa for stopping by our house last weekend, the good behavior lasted about 5 minutes. You know boys you can't tell they love each other unless their fighting.

Remembering Erin:

She loved to dress up. If she had her choice between pants or a dress, she'd pick a dress. Some days when the boys would run around the house in their batman and spiderman costumes she would wear her cinderella dress. I was so anxious to see her grow up into a beautiful women. I have a lot of "I wonder" ideas going thru my head. Its hard to tell what her life could have been like. After all the chemo and radiation its anyones guess.

Its hard to get Laura to wear ANY kind of clothes much less a dress. She likes to run with the boys and get dirty. That's another reason why I didn't bother buying her a new dress.

Time to go, See ya

Holli

-- Posted on Tuesday, December 21 2004

Good morning

The boys are getting so excited. After we put them to bed if you listen by their door you can hear them discuss their plans for Christmas. They usually talk about going to grandpa and grandma's house, seeing all their cousins and the gifts they are going to be getting.

Last night I watched a small part of a lecture on the research channel. A group called the Northwest Cancer Partners as hosting the lecture and they had a guest speaker from Children's Hospital of Boston. His topic was about "Beating Cancer At Its Own Game". Basically he said that the body has an immune system that can fight cancer cells. Its just getting enough of the cancer fighting cells(T-cells) in a persons body to defend itself. There were other theories that they discussed as well, but I liked this one because its a way of fighting this disease using your own natural defense. I have to admit, I never wanted to have to give Erin chemo(chemical) therapy. I hated that poison, but there is nothing else out there. I read a few books when Erin was going thru treatment, both talked about cleansing(detoxifying) body and then building up the immune system naturally so that the body, with its God-given defense system could do what its supposed to.

Chris and I made all the decisions for Erin because she was to young to tell us what she wanted, I hope and pray every night that she understands NOW that we did what we thought was the right thing. No matter what we would have done it was all in God's plan to have here here as long as she was and not a minute more.

Give glory to God, for you do not know when your time is up.

Season's Greetings

Holli

-- Posted on Monday, December 20 2004

Good morning

I finished shopping this weekend. I can't believe it took me this long. I know why other years I've gotten done sooner. The stores were CRAZY. I made a pledge to myself never to wait that long again.

Just a few more things to wrap, and then its time to figure out my grocery list for the food items I will be taking to various family gatherings.

Brrrrr.....Hope you all can keep warm later this week. Sounds like its going to be a cold one. We knew it would come, just wish it would bring a little snow with it. I'm a sucker for Bing Crosby's White Christmas.

Lots to do this week so its time to go.

Remembering Erin:

I'll get to see some of Erin in Laura this year, only because Laura fits into the dress Erin wore for Christmas last year. Laura is the hand-me-down queen. Thats one of the first things little sisters get from their big sisters(old clothes).

Happy Holidays

Holli

-- Posted on Friday, December 17 2004

TGIF and good morning to all

Can you believe another Friday already? One week from now and it'll be christmas eve. I'm ready to spend some time with family and have some fun. I truly don't get into the whole gift receiving thing, I am more of a giver. I just want good food and good company.

SHOUT OUTS TO:

Thankyou Darlene for the book. I received it yesterday and read almost half of it already.

Yes Tiffany we received the care package before Erin died, I'm sorry to report she never used any of it. She never felt good enough those last couple of days.

Remembering Erin....

Today is the last day I will ever see Erins means of transportation. I cursed it every time she would run down hall. She has left her mark on the trim in this house. Its all chewed up by that walker. She was ruthless, last November when she received it, her little sister was just learning to crawl. Laura's little chubby fingers were victims of those squeaky wheels. Erin also had a way of getting the boys back. When they would lay on the floor to watch t.v., Erin would gracefully go running by them catching their heads on the corner of her walker. She thought it was funny, and knew what she was doing. She couldn't forget to punish mom and dad to. The one corner of it was just the right height to dig into the back soft tender part of your ankle.

It served all kinds of purposes. She had a little basket, that I tied on to it, always full of little girl things, oh and flowers. She made her dad so mad when she would take it upon herself to prune the rose bushes outside herself. All the nice flowers would be in her basket and the dead ones still on the bushes. When she broke her leg last March, I put a cutting board across it and used it like a minature wheelchair. It was her sidekick. I always loved watching her run out of the hospital(she did to). It gave her independence and freedom she needed to be somewhat like the other kids. Although it made me sad when all the other cousins would run upstairs(or down) and she would be left behind. She is no longer getting left behind.

Love lots and lots Erin

Thanks for visiting

Holli

-- Posted on Thursday, December 16 2004

Good morning

I have to make this quick. All the boys are out of the house and Laura is still sleeping. This is my chance to finish wrapping presents from you now who. It gets a little tricky when two nosy little boys are around.

Both of my boys were missing Erin yesterday. At separate times they both shared with me that they would like to go and put a few things on her grave so that she would have them in heaven for christmas. Grant wants to put a few books and Luke would like to put a teddy bear or a doll.

How sweet of them. They seem to be getting into the spirit of christmas because yesterday when Grant came home from school he and Luke went into their bedroom and decided to make their own living nativity scene. Grant was the master planner. They asked me for some fake straw, and a brown blanket. I cut strips of yellow paper for the straw and found a brown pillow case. They told I couldn't look until they were done. Soon after they started screaming "Mom, come here we have a surprise for you". That usually means trouble. Not yesterday. It was so cute, if I do say so myself. Grant had gotten a wooden cradle from Erins things and placed one of her dolls in it ontop of the fake straw. He put his blue blanket over his head kneeled down and folded his hands like he was praying over the baby. Luke had the brown blanket on his head, he carried a broken sickle(halloween decoration) and was standing behind Grant just looking at the baby in the cradle. Luke asked me do you know who we are? I said I think so, but do you know who you are? They got it right.

Grant was very proud of himself. Grandma Joyce stopped over and they put on the show for her, she took their picture. As she was leaving Grant yelled out the door,"make sure you give me a copy of that picture, so I can see what I look like"

Thats all from yesterday

Holli

-- Posted on Wednesday, December 15 2004

Good morning

Just enjoying my picker-upper(coffee) this morning, trying to think of something to write. We didn't do anything interesting yesterday, and don't plan on anything today.

There is a picture of Erin sitting right by the computer. Its the one where she is holding the huge bright red lollipop. She is wearing a purple and white striped jumper suit. That contagious smile, she could make anyone's day brighter just by looking at her. So that's my encouragement everyday as I type this. I look at her picture and she tells me to keep writing. Tell them all about me, remember me everyday.

I will keep typing no matter how boring some days may seem. Its a way to remind you of Erin and keep me sane.

Remembering Erin...

Everything was going good last year at this time. She went thru radiation without any trouble. Our hospital stays were confined to the administering of chemo. As I said before she never got any infections or colds over the holiday season. But, we are coming up to the anniversary of her second Life Flight. I'll write about that some other time.

Little LuLu just came down the stairs. I can't believe she is awake already. Saggy bottoms, time to change her to.

Later

Holli

-- Posted on Tuesday, December 14 2004

Good morning

Here we are once again. The days are quickly slipping by. Grants concert went well. He told me he wasn't going to sing. He soon forgot what he said, and among all the other children, sang along.

Thanks to Grandpa and Grandma we didn't have to take Luke and Laura. What a nightmare that could have been.

I am also keeping Luke home from school today. I think(know) he is catching a cold. There was lots of coughing last night. I don't want to pass that on to other children so close to christmas.

Grant is anxious about seeing santa. I told him that next Saturday is Christmas. He said "then I have to hurry up and get Santa my list." So as he was walking out the door this morning he repeated over and over that today needs to be the day Santa gets his list. I wish there was a drive thru for visiting Santa. Sorry Grant I don't think its going to happen today.

Remembering Erin:
She didn't care to much for Santa. Chris could probably tell you about last years experience with Santa. He was with her at the hospital when Santa visisted them.

I could tell you about the year before that though. She was only 13 months old. She was a little unsure at first. She was just learning to walk and couldn't get away very fast. She saw her brothers on Santas lap and decided it was ok. Poor Santa had three children at or under the age of three on his lap at one time. She loved to get her picture taken. Even at the tender age of one year she could say "CHEEEEESE". I have a very happy, smiling picture of Erin with Santa despite the fact there was a tumor growing in her brain, that she was having headaches and vomitting from the pressure.

Christmas is a time for children. I won't have all of mine here with me. It doesn't seem right. But I am not alone. Many families will spend this christmas without a loved one. I pray you find some kind of peace this season.

I visit the Rhabdoid Kids website often. It seems to me that heaven got extremely brighter and more beautiful this year. You might be wondering why I say this. Just about every child that I ever read about on that website(who was still living) has now since passed away. Most of the children were not even on there a year and a half ago. Just think, most were new to Rhabdoid within this year.To me that tells me that they(medical profession) are not moving in the right direction. Children with Rhabdoid generally are not living longer. One child lost to Rhabdoid is one too many.

Way to long today. Hope I didn't lose you along the way.

Holli

-- Posted on Monday, December 13 2004

Good Monday morning to all

The weekend seemed to go by so slow. I'm ready to get back into that daily groove.
I went and saw my youngest sisters baby yesterday. What a little sweetie. You forget just how little they are. Laura seems like a giant compared to him. They named him Cael(pronounced Kale). Sarah told me that the last time they were here when Erin was alive she(Sarah) told Erin what the name was going to be if it was a boy.
I'm sure Erin already had a chance to see little Cael but I would have like to have been there to see it. She had so much love in her, and babies were her favorite.

In other news...Grant has his christmas program tonight. I don't know what I should do about Laura, she will ruin it if I take her. She is at that stage where all she wants to do is run run run.

I still haven't finished christmas shopping. I have just a few things to get, I don't know why I'm dragging it out so long. I just need to get it done.

I have already got a news years resolution in mind. How about you?

I don't think I will get Christmas cards out this year. So I'm sending out Season's Greetings via internet. Hey, look at it this way I can reach alot more people, and there's no postage. Just kidding.

Got to go, my fans are calling me.

Holli

-- Posted on Friday, December 10 2004

Good morning

Everyone have big plans for the weekend? This weekend and next weekend are all you have left if you don't have a chance to shop during the week.

Erin loved to go shopping. I miss having my little helper, of course all she wanted to shop for was purses and babies. She would say "I go to town, I pick out a dolly." And if she didn't get to go along when I would walk through the door the first thing she would say was "you got a prize?" Miss you sweet Erin...............

Thanks for last night mom-in-law I had a terribly good time.

So I didn't my groceries bought yesterday, but I got most of the christmas presents wrapped.

Planned on going to my mothers to help her clean the house for christmas. Its more fun to clean someone elses house.

The weeks are flying by, I'm trying to enjoy this time, soon the holidays will be over, then what?

Time to go, lots to do, as usual.

Holli

-- Posted on Thursday, December 9 2004

Good morning

Well there is only 15 more shopping days left, if you don't count today.

I don't have much planned today, but those are the days something always comes up. I just remembered I need to get some groceries. See what I mean. I had gotten so used to not planning anything when Erin was around. Only because the after effects of chemo always seemed to stick its ugly head out when you had plans.

We got lucky last year at Christmas time. Erin was on "light" chemo so it didn't seem to effect her blood counts as much, thus she never had any infections to deal with.

Well I hate to cut it short but I hear the pitter, patter of little feet upstairs. You know who. See ya

Holli

-- Posted on Wednesday, December 8 2004

Good morning

Well I have to admit, as much as I wanted to get rid of Erins med. equipment, I was sad to see it go. It was a part of Erin for half her life. We didn't need it anymore, so it had to go, that chapter had to end. Just like the walker. The other kids like to get it out and mess with it. There are to many memories that surround it, therefore it must go as well. I'm not trying to get rid of those memories, I just don't want to be saddened every time I turn around. It was never ours to keep. Besides if I want to remember Erin and her walker all I have to do is look at all the nicks and scuff marks on the trim in this house. She left her mark everywhere.

I don't know if I have found any kind of new normal yet. Sometimes I feel like I'm just trying to forget just to get around the pain and saddness. Or maybe I just want to make it thru the day for my kids. But by doing that I have to set aside my feelings. Lately they have been getting all built up and for the last couple of days all I can think about is Erin. Those last couple of weeks of her life replay in my mind. But the perspective is different. Its as if my body was there doing the routine of my life, but I don't remember it. Surely I took care of the other children, did laundry(some of it), cooked meals drove a car, went to the grocery store. But all I remember doing is sitting in the rocking chair with Erin. Constantly taking care of her every need. These thoughts come and go quickly, for I remember the look in Erins eyes. She was so tired. I think that she knew she could not go on. God had given her the grace to endure what she did and to die peacefully. Most of the time I'm not sure I am doing or feeling what I am supposed to. So I just let it come and deal with it as I choose not knowing if its right or wrong but just going with it. Hopefully some day it will all be clear to me.

I don't know if I mentioned this the other day but when Father Rod was here we mentioned to him that we wished we knew why this happened and that Erin hopefully knew now. He said that we as humans ask why, but Erin knows because...

Maybe a little to deep today but these thoughts and feelings are what came today. Thanks to a very good friend who sent me an extremely good book. Thanks Jen.

Later

Holli

-- Posted on Tuesday, December 7 2004

Good morning

Its very quiet this morning. The boys are off to school once again and its just Laura and me. We will be doing our usual house work, I just can't seem to catch up on that laundry.

Childrens Home Health called yesterday wanting to know if Erin ever started using her feeding pump again and how it was going. The woman on the other end got very quiet when I told her that Erin had passed away in October. I asked her if I was supposed to call her and let her know or if it was Erins doctors/nurses job. I told her I have everything ready to go and have been waiting to get rid of it. She said that she would take care of the rest. I was a little upset for the fact that Childrens hospital and Children's Home Health work together to get us this equipment, the nurses at the hospital set it all up for us in the beginning. I guess once your child dies they ( the hospital) no longer has anything to do with you.

Last night St. Nicholas brought a few goodies to our kids. Don't know if very many celebrate this tradition. here a bit of information we found on the internet:

It was the highlight of children during Advent.
Children originally left straw for St. Nick's horses but then started putting out a shoe or boot on the night of Dec. 5th in hopes that they would find it full of sweets nuts and fruits the next day.
St. Nicholas carried a stick and often a book of sins, of small children. St. Nicholas came to reward good children but also to punish the bad. He was somtimes accompanied by a scary, dark, companion who's job was to carry out the due punishment. His name was Hans Muff but he also has seven other versions of his name but this is the one we use.

For us its the Pre-Santa you better be good bribe, or else, Hans Muff is going to come visit.

Its a German Holiday tradition and if you want to know more search the world wide web.

Time to go. Thanks for visiting.

Erin, I just wanted to tell you that your little sister enjoys your favorite snack just as much as you did, goldfish crackers, she filled her mouth so full yesterday I thought she was going to choke. Down the hatch they went and then came back for more, just like you used to do.
Miss you sweet girl, wanting one of those big hugs.

Holli

-- Posted on Monday, December 6 2004

Good morning

WOW!! What else can I say. A BIG HUGE THANKYOU to US92. For those you you that read this and are out of our area that is a radio station in Norfolk Nebraska, 92.7 on your FM radio. They have a wish granting thing going on, I'd give you more details but don't want to get anything wrong, so if you can just listen to the radio station.

OK, so they are granting us a wish that was sent in by my family and a great friend of mine. A night out away from the kids. I probably should have told them(US92) that the last two wedding anniversaries were spent in the hospital with Erin for brain surgeries. What a way to spend it huh? I wouldn't have had it any other way, that was where we needed to be. Chris and I spent more time apart over those eigthteen months, we used to say that all we wanted was to be a family again, all of us together doing normal family things. Unfortunately, we can now but we are missing a family member.

Erin, missing you lots today, hearing grandmas letter made me think of all those days you never felt very good and all the pain you suffered thru without hardly ever complaining. How can one small child be so strong?

Later

Holli

-- Posted on Sunday, December 5 2004

Good afternoon

There's not much to report today. I wanted to go to Erins gravesite today but the weather is not cooperating.

Its going to be a quite day. We spent most of the day cleaning. The boys were such big helpers they cleaned their own room. I was wondering when this day would come.

I made a pot of chili this morning after church and we've got the fireplace going now. I'm just waiting for Laura to take a nap so I can sit down and enjoy an afternoon movie.

I should be wrapping presents, but I'm going to enjoy the rest of day doing nothing. Hope you can do the same. Until next time..................

Holli

P.S. Erin, wish you could be here to cozy up with us around the fireplace. Love ya lots!!!!!!!!!!!!!!

-- Posted on Friday, December 3 2004

TGIF and Good morning

For the last two nights Grant has told me that he has been having trouble getting to sleep. Here I thought it might have to do with Erin. Not a chance, he said he is thinking about some toy soldiers he wants for christmas. We talk about the true meaning of Christmas alot, we have a nativity set in our living room and a advent candle wreath that he made at school, but in one ear and out the other.

When I was coming out of Wal-mart yesterday, Laura was with me, I caught her holding onto her blanket just like Erin used to. Little things like that make me miss her so.

All day yesterday she was on my mind. It hasn't been like that since the first few days after her death. I'm sure I will have more.

One more thing before I go for today... I just wanted to encourage you to give a little more this holiday season. Especially to God for giving us the wonderful gifts in our lives, whatever they may be. I suggest doing something nice for someone, going a little farther to help someone out. It will make you feel good.

Later

Holli

-- Posted on Thursday, December 2 2004

Good morning

For those of you who would like to donate toys the Columbus Area Holiday Spirit Coop is the place to go. They will be collecting at the old school(I don't know the name) the one to the south of Jo and AL's grocery store, from December 11-15.

Last night when I was coming back from the store a thought popped in my head about Erin. I thought to myself how in a way that Erins life was sacrificed for us. Maybe for politcal correctness you prefer the word awakening. Either way, she was given to us from heaven only on loan. She touched so many people in her short life, and in so many different ways. She had to get cancer and die for us to wake up and look at life in a very different way. It was all in Gods plan. Through Erin he brought more families closer, maybe helped some people not to take so many things for granted, some might have even turned to him more. I know that Erins experience has brought me closer to God. We got to talk often over the past 18 months and even more now. I know my time on earth is brief and all I want to do now is bring my family closer to God so that one day we can all be with Erin.

So for that I have to say, thankyou angel. I'm sorry you had to give so much so that others could benefit from you. I am very proud of you. Your Dad and I are very honored to have been your parents.

Like I said it was just a thought that popped in my head, you may disagree or maybe you just couldn't understand what I just typed. Its a jumbled idea that is difficult to put into words.

Thanks to Father Rod for stopping by yesterday. It was nice to talk to him again.

All for now

Holli

-- Posted on Wednesday, December 1 2004

Good Morning

Yesterday I found a place to donate all the extra toys I bought. The woman on the phone seemed very excited about getting them. There are so many needed children out there, I just wish I had enough money to buy every child a little something. Christmas is about children, you know the Christ child born. Fr. Dave was right I think we caught up in the holiday for the wrong reason. I will be the first to admit, I get a little crazy about finding the perfect gift. But only because I want to make someone happy.

Grant is so excited for Christmas morning, he said he is not going to open up any of his gifts. He is going to save them. When I asked him what he plans on playing with that morning if he is not going to open them he just gave me a blank stare. Then he said he might open one or two. I think he wants to keep the excitement of having an unopened gift. He would like to make it last until next year. About two months ago I found some valentines candy of his. He had me put it on top of the refrigerator. I don't clean off the top of my refrigerator that often o.k.

When I was cleaning the house the other day, I was dusting off some pictures. Laura came over to me and pointed at the picture and said "whats that". I said thats your sister Erin. She repeated her name and ran off again. It makes me sad to think that Laura wont have a big sister to show her the ropes. Sure she has big brothers, but they don't know how to put on make-up. They won't have any cool clothes to wear and fight over. There are just some things that sisters share that brothers could never. Anyone with an older sister can relate. At least she will have someone up above looking out for her, making sure she don't date crummy boys. I'm sure Dad will help in that department as well.

Thanks for visiting today.

Erin, I love you, I will never let Laura forget you.

Holli

-- Posted on Tuesday, November 30 2004

Good Morning,

Well this morning when we stepped out on to the tundra the temp was -5 with 6" of snow on the ground but i don't mind it. when i think of snow I think of the times last year that we spent in the Children's Hospital and how we missed some big snow storms but i always thought that no matter what i was with Erin. I'm not saying i enjoyed the hospital but that i cherished any time we could spend together.

I'm glad to hear that families are able to sit down and hug and take time for each other alittle more often because of Erin. I think that in life the small things mean the most but are often overlooked. So when your day seems hectic and the road gets rough stop and think how lucky we all are to have God and family it will do you some good.

Thanks you Erin we love you!!

Chris

-- Posted on Monday, November 29 2004

Good afternoon

I've been cleaning as usual. Monday mornings are very busy, putting things back together from the weekend. I did not do any laundry over the long holiday weekend so its stacked up.

I feel as though my daily updates are getting boring, so I might just update a few times a week. I'm running out of things to say(type). Who could be interested anymore, since Erin passed our lives have slowed down some and most things don't seem so important anymore.

I need to get in contact with Children's Home Health I am tired of running into all of Erins medical equipment. We still have the walker Erin used. I wish I could get rid of that too. Its just more closure for us.

Got to go. More work to be done.

Later

Holli

-- Posted on Sunday, November 28 2004

Let it snow, Let it snow, Let it snow!

I love it, sure gets ya in the holiday spirit. Thanks grandpa Roger and grandma Marilyn for stopping by, you saved our marriage!

Chris and I were trying to put the doors on our new fireplace. Its been sitting there since August without any doors. The cold finally got Chris to decide to put them on. Only it wasn't as easy as the instructions made it sound. No worries, we have fire!

I went to church this morning, ALONE, finally it seemed like I could get something out of it. No kids fighting or crying. Fr. Dan Keller used to be the priest at Saint Bonaventure, in fact he married Chris and I. Found out a church he is need of some extra prayers. I know he has cancer but I don't want to be wrong about where, I thought in his brain? Anyway, please pray for him.

Erin, missing your presence here with us on earth, but know you are looking down on us from heaven. Love ya!

Holli

-- Posted on Saturday, November 27 2004

Good morning

Thanksgiving is offically over for us. We made it through our first major holiday without Erin. Granted she wasn't here for Halloween either, but it was such a whirlwind then. Besides thats not a family get together kind of holiday.

We bought a Christmas tree yesterday. We will be decorating it today. We didn't have time yesterday. Its a real tree. It was a tradition in my family to always have a real tree. Chris has caught on and would like nothing else than a real tree. It smells so fresh, it reminds me of when I was little, fresh pine and wrapping paper.

I hope Laura won't be to pesky. I put up a small fake practice tree the other day. Lets just say she didn't pass the test. I think she will leave the real one alone because the needles are sharp.

Can't think of much else to say. Thanks to all those who still visit the site. Hope its not to boring to read.

Erin, I found a special christmas tree ornament for you. We love you and miss you daily....................

Holli

-- Posted on Friday, November 26 2004

For those of you checking the website today I thought I would give you a little update.

We had a great Thanksgiving celebration yesterday. We enjoyed the whole family. Ate to much food and probably went home way to late.

Tonight we will be doing the same thing again only at my sisters house.

I could use a nap before we go. Yes, I ws up at 4:15a.m. I know its my own fault. But lots of shopping was done and there won't be much more to do. I was surprised at how many people there WEREN"T in town. I got front row parking at every store, and didn't have to wait in line for more than 5 minutes. I know everything turned out great this morning because I had my little helper along with me. You guessed it, Erin. Since shes been gone I've noticed that some things aren't as difficult as they used to be. Like finding things when they are lost. Finding parking spaces when I go to get groceries with the little ones and so on. You get the picture right? I owe it all to Erin, she keeps me from going crazy sometimes.

Thanks my angel!!!!!!!!!!!!

Holli

-- Posted on Thursday, November 25 2004

Good morning

Happy Thanksgiving! I trust everyone is watching the parade on T.V. I had the privilege of attending it back in 1995. It truly is a sight to see. The television doesn't do it justice.

For those of you I won't be seeing this Thanksgiving, I hope to see you at the "Krings Christmas".

I can't type much more, I have to get ready to go to the in-laws house. I like it their on the holidays, very traditional and comfortable. Besides it was one of Erins favorite places to go. She liked the lake, she could see boats and lots of ducks.

Erin, we'll be missing you extra today when were eating. You weren't a picky eater, you loved food so much. XOXO

Holli

-- Posted on Wednesday, November 24 2004

Good morning

Sorry its taking so long to update. I have got all the kids here this morning. Its been nothing but get me this and get me that. Our middle child Luke has been looking for his spiderman costume since last night. He wears it often but can't remember what he does with it when he is done playing. In fact he role plays so much that we have gone through one spiderman costume already and the one we have now is nearing the end.

I took the boys bunkbeds apart yesterday so that Grant, who sleeps on the top, doesn't have such a problem getting down in the middle of the night to go to the bathroom. In the process of cleaning their room I found some of Erins favorite toys. I think it was her way of saying hello to me. It reminded me of the other day when I was digging my purse trying to find some change when I found a necklace of Erins that had her name on it, and some of her bracelets. It doesn't make me sad but just brings back memories of her sweet nature. I miss my girly girl, Laura is nothing like her sister. Rightfully so she shouldn't be. But sometimes I look at Laura and try to find things about her that remind me of Erin. Its like when I hold Laura's chubby hands sometimes I close my eyes and try to imagine I'm holding Erins hand. I don't know if that right but its what I do to make it.

I have finally caught up on all the laundry. Some of the things I washed were Erins. I couldn't remeber when she wore them last but they still smelled like her.

She has been on my mind alot lately. I think it because of the whole holiday season approaching. When I was shopping last weekend I realized that we will have less presents to buy. But then I got an idea, I would like to buy some toys in Erins name and donate them to children who would otherwise not get as much. I don't know how to do this so if anybody knows who to get in touch with, let me know.

Erin, missing you my little princess, you would have been so easy to shop for this year.

Holli

-- Posted on Tuesday, November 23 2004

Good Day

Today is the last day of school for the boys for the week.

Congratulations to Grant teacher. Another girl, Reagan, Grant fell in love with her already after just a peek at her. That was all he could talk about yesterday after he got home from school.

He said we need a new baby, because Laura is getting to old and she is naughty.

Chris has also got a Thanksgiving meal going on at work today. I'm busy getting some food ready to take. All the smells of the food are floating throughout the house. I love the holidays. Its about the only time of year that you can smell so many different scents so early in the morning.

I got some shopping done this weekend. It was actually a really good day. You know what I mean, the one where you walk in the store and everything you need jumps out at you. They have all the right sizes, at just the right price. Things just click, you get a good parking spot. You walk up to the registers to find out they are opening up another right in front of you so you no longer have to wait.

I hope this Friday will be like that. Yes, I have to admit I am one of those crazy shoppers who gets up at 4:30a.m. to wait in line. I am not a shopper on a regular basis. In fact I hate it. But there is something about being up that early, standing in line with a bunch of strangers, christmas music blaring over the speakers outside, that puts me in the holiday spirit. I never thought I would like it. But one year(2001) I thought I would try it. They had some great deals on some toys for the kids. The day before my sisters and mother all said they would go to. Wouldn't you know they all backed out. They missed out and I have been hooked ever since.

Its time to go the sausage is ready to be put in the slow cooker.

Missing you Erin, she loved to help me cook.

Holli

-- Posted on Monday, November 22 2004

Good morning.
I wanted to touch on a subject that one of our guestbook entries left. Its something that Chris and I can't stress enough. I hope I put this into words that make sense.

People tell us all the time that we have touched their lives. That they have learned life lessons through Erins story. I feel that, that was Erin's job here on earth. She was sent here to give so many people a wake up call about their lives, to look around and realize that sometimes(most) of the time we take things for granted. I know in my own life when the world(my children) get out of control. Or we have a bad day, all I have to do is think of Erins face and remember all that she went through and endured. She thought that needles, doctors,and medical procedures were just a part of everday life. Back on subject though, I know she never took anything for granted. Everyday she felt well enough she lived it to the fullest. Things as simple as food she enjoyed and savored. She made the most of every bite she took. Even when she knew she couldn't swallow anymore. She still wanted to eat. Taking bite by bite, chewing it up,and taking in all the flavor then spitting it out. Walking around was another gift she embraced. She wanted to walk so bad. When she got her walker last November it took her only a matter of hours to master it. She was so proud of herself. She knew that she could now follow the other kids around the yard. Grass and rocks didn't stop her. The last few weeks of her life when she couldn't walk anymore never stopped her from wanting to go outside to watch the other kids play and run. When we were in the house she would crawl to get to where she need to go. So determined.
Erin like most children woke up each morning like it was all brand new. She never brought any struggles with her from the day before. She took each day as its own. That is one of the good things about being a kid, no concept of time.
So please, try not to take for granted all the little things.

To Erin: We know we will never forget all the pain and suffering you had to go through to get us to see. With this website we hope that no one else will either. Remembering your little quirks that made you special.

Holli

-- Posted on Saturday, November 20 2004

Happy Birthday Chris!!What are you now.....29 again? Just kidding, I wish Erin was here so she could give her daddy a big hug and kiss.

I wanted to devote this journal to my husband Chris. It is his birthday today and I just wanted to say thanks for helping me get through this. Over the past year and a half he really had to step up to plate and be a father. Sometimes a single parent, when I was stuck in the hospital with Erin. He kept up with the laundry and cooking while I was gone and always made sure my other kids got an extra goodnight kiss when I wasn't there. On the days it was his turn to sit in that fine hospital we jokingly called Children's Hilton, Erin was number one to him. I'm sure she had more fun with him, just because mom is more business and dad is a whole lot of fun. He also got the nurses to do more things for him. Don't know what the secret is I guess. As much as we both hated staying in the hosiptal it was cherished time alone with Erin. Chris got so good at staying in the hosptial he could run most of the medical equipment.

When we decided that Erin had, had enough treatment Chris was right here at home with me helping me out. Caring for Erin took up most of the time. So doing the dishes and making sure the other kids were taking care of was a job he did well. Thanks again I couldn't have done it without you.

Holli

-- Posted on Friday, November 19 2004

Good morning

They say the sun might come out late this afternoon. As much as I like these dreary days I need some dry sunny days to finish putting up our christmas lights.

Laura had no fevers last night but she is so stuffed up. She has got a nasty cough as well. Those always seem to last for weeks on end. Boys have started coughing to. I hope they are better by Thanksgiving.

I can't think of anything else to type so I will leave you with this
I don't know who wrote it but hopfully it will brighten your day, since the sun might not.

Because we are often spiritually blind,
we fail to see God's hand at work.
God is there, though, present where we least expect Him.
My prayer is that God will surprise you today.
In your daily routine, in the stressful details of ordinary life,
when you least expect it, may grace leap out at you,
encouraging your heart.

Holli

-- Posted on Thursday, November 18 2004

Good morning

Didn't sleep much last night I thought that taking Laura to the doctor would set my mind at ease. It did for a while but last night at about 2:30a.m. Laura woke up with a temperature of 103.1. The tylenol worked and she fell back to sleep. I the back of my mind I am wondering whats going on with her, maybe theres more. But then I think that I'm over reacting because of Erin. When she used to get fevers, it was, rush to the emergency room to get checked out and most likely admitted. Then be there for days on end trying to figure out what she had. Most of the time they(the doctors) couldn't figure it out and eventually she would get better. I detest cancer. Hats off to those of you who still battle.

Only one week away from stuffing ourselves with turkey. I hope you all have a place to go and be with family. Our oldest son Grant thinks that he gets to go hunting after we eat on Thanksgiving day. Don't know who gave him that idea. He also told me yesterday that Uncle Brent and Randi are going to be getting him a real bow and arrow for his birthday. I'm not sure if they make one in a child size?

Time to get some work done before LuLu(Laura) wakes up.

Thinking about you each day Erin!!!!!!!!!!!!!!!!!

Holli

-- Posted on Wednesday, November 17 2004

Good afternoon, sorry its taking so long to update today. I had to take Laura to the doctor this morning. She was running a fever yesterday afternoon and last night. She was up for three hours last night trying to get comfortable enough to fall back to sleep. The doctor said she must just have a virus. There were no signs of ear infection or sore throat. She fell asleep on the way home that was at about 11:15 and she is still sleeping. I wish I could get a nap in.
I can't type much longer the boys are fighting upstairs. I don't think Santa is going to make it this year if they keep this up.
We still have the stray dog. Anybody out there want it. We hate to have to turn her over to the Human Society.
Thankyou to all who continue to visit Erin's website.

Holli

-- Posted on Tuesday, November 16 2004

My mother wrote this poem a couple of days before Erin died. My brother-in-law read it at her visitation/vigil.

Our Miracle

We didn't get our miracle?
What do you mean?
We did have our miracle,
Her name is Erin Christine.

We all prayed for Erin,
When the sad news came
Of numerous tumors
In her spine and brain.

For a year and a half
The doctors all tried
Our miracle happened!
They kept her alive.

We saw her suffer
And we saw her play
In spite of it all
She was happy anyway

Erin loved her family
And our heartstrings, she did tug
When she gave you her smile
And especially her big hugs

This poem is not meant
For you to be sad
But to feel the joy
With Erin we all had

So through our happiness
And through our tears
We thank God for our
Miracle of Erin
For the past three years.

We'll love you and miss you always Erin!

Grandma Joyce

Last night I found some more children with Rhabdoid cancer who are nearing the end. There were two other children who had died in the last week. So much heart break, does God need that many on his side?

Holli

-- Posted on Monday, November 15 2004

Its another Monday. The weekend went fast as usual. We took the boys yesterday to see "The Polar Express". Highly recommend it. It was magical, everything I remember christmas being like was in that movie. It really takes you back to the time when Christmas made you so excited you couldn't sleep. I have to tell you that there was nothing in the movie about the first christmas. The true meaning, the spiritual christmas was nowhere to be seen. So don't take your kids thinking your going to be sending a message about what christmas is really about. This was just a fun movie about what you thought was important when you were a kid.
Enough about the movie. Our daily lives are slowly becoming routine again. I don't spend half of the day thinking about what would I be doing if Erin was here. How much I miss her, and asking why she couldn't have been perfect here on earth with us. I always knew I wasn't going to get an answer, but you still ask. Sometimes I feel guilty not thinking about Erin as much. I prayed so hard that the sadness would go away. Its starting to but like I said there is some guilt. That to will fade. Erin knows how we feel about her without us acting out on it. She needs us to be happy and move on so that she can rest peacefully. I would hate for her to have to worry about us.
Have you started your holiday shopping? Not me.

Miss you Erin!

Holli

-- Posted on Sunday, November 14 2004

Good morning!

I have to make this short I have to go to church this morning.
We have another mouth to feed at this house, I AM NOT pregnant. Some high school kids brought a stray dog over to our house yesterday. They didn't know what to do with it. Well we don't either. Nobody has been around looking for it. He is a nice dog (about 8 mos. old). The boys are having so much fun with him. First thing this morning at about 7:30a.m. they wanted to get dressed and go play with him. Our other dogs get along great with him to but we cannot keep it!!
Laura is sleeping in a big girl bed. No more crib for her. She will have nothing to do with it. I would like to take it apart today and put it away. I will be the first time in five years that its not being occupied by a little one.
Much to do today, got to go!
The boys want to see the movie "The Polar Express"

Miss you baby girl!!!!!!!

Chris and Holli

-- Posted on Friday, November 12 2004

I just wanted to leave an update on our friend Emily Cook. We have a link to her website from Erins. Her family could use prayers and encouragement. Their daughter Emily went home to Jesus this afternoon. Please keep them in thought and prayer as they travel down the same road of sorrow and healing.
I sure Erin was there showing her that everything was ok.
I must admit I'm a bit jealous, Emily will get to see Erin.
We met Emily a while back, and when I told the boys that she died today, they were concerned for her family but happy to know Erin had a friend in heaven to play with.

God only takes the best
Missing you even more tonight, Erin!!!!!!!!!!!!!!!

Holli

-- Posted on Friday, November 12 2004

Good Morning...
We are taking each day as it comes and realizing that is all we are ever given.
A special thank you goes to all the Nurses at Childrens Hospital that touched Erins life. From the Hem/Moc clinic to all the nurses on the floor we cherish the relationships that were developed with our family.
Last night when we were getting Laura's pjs on Holli came in with a pair that Erin always wore and asked me if it was okay to let Laura wear them..I said sure not thinking of how much Laura would remind us of a normal 18 month old little girl we never had. I can tell you Laura is naughty as ever.

Holli and I think of Erin all the time and wish we could hold her again but know she is in a better place. It was frustrating to watch her die and know that we really could do nothing however it was always in Gods hands. I try to stay optimistic about a cure for Rhabdoid but know that many more children are being given the same protocol that just is not working. With the mindset that it bought us time we are very gratful but I feel that many more kids like Erin will not make it in the long run. I'm not bitter just pointing out the reality of Rhabdoid brain cancer. We were given 3 years with Erin and thats was alot more than just today.

Missing the gorks, purses and popsicles....
WE LOVE YOU ERIN .........MOMMY AND DADDY

-- Posted on Thursday, November 11 2004

Good Morning

Happy Veterans Day to all who served or is doing so at this time.

I want to give thanks to God for giving us great holiday memories from last year. Those were our last together as a whole family. Last year at this time Erin was still on chemo. We were so worried she would be sick in the hospital during Thanksgiving and Christmas. God saw to it that we would all be well. Thats just what happened, we had the best holiday season. Erin had a great time. Don't worry we have it all on videotape.

The other kids look forward to this time of year. So I'm looking forward to making it extra special for them. Although it won't be the same without Erin we will do our best.

Keep warm today!

Erin, missing your BIG (almost choking me) hugs!!!!!!!!!!!!

Holli

-- Posted on Wednesday, November 10 2004

One day at a time seems to be the running theme. I would like to express a big thankyou for all the people who continue to follow our journal keep reading and we will keep writing. Thanks for all the comforting thoughts and prayers from the nurses at Clarkson hospital recovery room. Radiation was not an easy thing for Erin to go through but with such caring nurses it made it a bit easier.
I also want everyone to pray for Emily Cook from Omaha who is fighting this terrible disease. Please pray that her family will find the strength to make it through this difficult time. We must all come to realize that what is the best for for those suffering from a brain tumor is the hardest thing for a family. We miss Erin dearly but know that she is in heaven with Jesus where there is no cancer ...no pain...WE LOVE YOU ERIN!

CHRIS

-- Posted on Tuesday, November 9 2004

One day at a time. Thats how its going, if anybody wanted to know.

Yesterday was a busy day around here. I did five loads of laundry and I'm still not done. I also moved Erins bed into Laura's room. The sheets on her bed hadn't been changed. They still smelled like her. I hated moving it but it was one of those things I had to do. The boys were happy to get their room back.

I also cleaned out the toy room downstairs. It's time to get rid of toys nobody plays with anymore and throw away the broken ones. The Goodwill should be pleased with the toys they will be receiving.

Its just Laura and me this morning. Its very quiet, I don't like those times because I start to think of Erin and how much I miss her. I never wish her back here. All I have to do is remember how miserable she was those last few weeks. She would not want me to wish her back to a painful place. I know that she is enjoying herself to the fullest, and that something she could never do here on earth. No matter how happy she seemed, we never knew how much pain she was in. From all the chemo, and radiation and tumors. Thankyou God for getting rid of all that. I just wish it could have happened while she was here on earth with us.

Missing you and your big smiles!!!!!!!!!!!!!!!!!!!!!!!!!!!

Holli

-- Posted on Monday, November 8 2004

Well good morning. I have one off to school and one off to work. I know Chris feels strange going back. Our lives are so empty now not having to care for Erin. We are trying to fill in the empty space with the things we used to do. The things normal families do.

Grant wants to put up Christmas lights after school. I showed him on the calendar when Thanksgiving is and when Christmas is. Only 2 1/2 weeks until the Christmas tree can go up. Amazing how time passes.

Time for me to go get some things accomplished.

Missing you each and every day Erin!!!!!!!!!!!!!!!!!

Holli

-- Posted on Sunday, November 7 2004

I have to start off by thanking Erin for finding Daddy's wallet. She really is watching over us.

We have a friend named Emily who is in need of lots of prayers. She has a web site and you can find it through our "Links" page. She is the second child in Nebraska with Rhabdoid the same cancer Erin HAD.

Luke said tonight out of nowhere that he missed Erin. Grant is also missing her tonight, he said that when he gets to heaven he is going to run up to her and hug her for a long time because he misses her. Sounds like a good idea to me too.

We took the boys to a movie today. Its the first time we ever went together. "The Incredibles" Disney movie was different than most cartoons it was more of a action cartoon. More serious than humorous.

Time to go to bed. No more staying up late Daddy is starting back to work FULL time again. Its been a year and a half since. I think he is afraid to go back because his lack of concentration. He thinks of Erin often, and might feel guilty he cannot just sit and think of her all day long. That somehow his work would seem more important. We all know its not, but we need to eat and pay bills.

Did that just make sense to everyone? Don't know

Later

Holli

-- Posted on Saturday, November 6 2004

Good late evening to you all. Just going to give you a brief update because its about 11:30p.m. on Saturday night. We went to my parents farm tonight got a fire going outside. Its nice to get away to good old peace and quiet. There were so many stars out tonight. I witnessed a shooting star to. I like to imagine its Erin sending me a signal she's happy, which I'm sure she is I just like to have proof I guess.

Other than that bit of news I'm overjoyed you are still interested in reading what I have to type. Although I'm not sure what to type. The interesting part of our lives is gone. We are just trying to be as normal or as average as everybody else.

The boys are still asking questions about Erin but soon state that she is in heaven. We visited her grave site last night. To me it doesn't seem right. I guess I mean that I don't have to go there to be close to her. I am better off talking to her bed and stuffed animals. The boys seemed concerned that Erin was alone down in the ground. I assured them she was with us everywhere we went. Grant has to kiss every picture of Erin he sees. Luke still hasn't opened up. I don't think he ever will, he just doesn't get it. Laura is naughty as ever.

Later

Holli

-- Posted on Friday, November 5 2004

I think back to last friday and remember what a cloudy and windy day it was. I had asked Erin if she wanted to get out of bed and go watch a movie. For the first time she said no. I knew then she wasn't feeling well at all. She tried talking but was to weak and all that came out were a few sounds. I'm not sure what she was trying to tell me. Chris was singing in the backround, which she didn't like, and then she yelled out "shut up daddy", in her scratchy little voice. I convinced her to get up out of bed and move to the couch. We watched Monsters Inc. It was around 11:15a.m. while I was giving her a breathing treatment that I noticed her skin a very gray color. I yelled for Chris to come take a look. Not even a minute later she stopped breathing and her heart rate dropped to almost nothing. She struggled to come back and did. But we knew that it would be the day we all dreaded. For 10 more hours Erin fought. At 9:15p.m. after the other chilren went to bed, Erin must have known that it was her turn as well to "go to bed". With Chris and I and both sets of grandparents there, Erin peacefully left this world.

Missing you Erin!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Daddy Mommy Grant Luke and Laura

-- Posted on Thursday, November 4 2004

I don't know if I'll get a chance to update tommorow. It will be one week ago already. I have already begun to relive her last days. Last week on this night Uncle Ken and Aunt Sarah had been here. Erin seemed to be doing so well that evening. We all enjoyed their company. Erin even ate a few bites of pizza. Soon after she fell asleep on the couch. Last Thursday would be the last time Erin would ever sit at our table and eat or color(was one of her favorite things).

I don't know how healthy it is to keeping going over Erins last moments but its like a broken record in my head. I hope it passes soon.

Missing my first precious little girl. If we could do things over, I would have never let you out of my arms that night.

Holli

-- Posted on Thursday, November 4 2004

Its so quiet in the house this morning. Both boys are at school and Laura is still sleeping. I hope to spend some alone time with her(Laura). She been pushed to the side to many times. She was only 3 weeks old when we found Erin's tumors. Laura was tossed around to different family alot. Erin always came first. Its not to late to bond with Laura, maybe we will go shopping, or just sit together and watch The Wiggles.

Can you believe they are already playing Christmas music on the radio? One Omaha station is playing it nonstop. What about Thanksgiving? Don't we have anything to be thankful for anymore? I realize stores don't make much profit off of that holiday, but we should all take a good hard look at our lives. One thing this whole experience with Erin has taught Chris and I was to be thankful. Especially for the little things.

Always giving thanks,

Chris and Holli

-- Posted on Wednesday, November 3 2004

Today is the first day of our brand new life. We will begin to find a new normal, and a new routine.

Grant went back to school today. He could wait to see his friends again.

Erin had a beautiful funeral service. Thankyou to everyone for taking time off work or school to attend. Once again I have to say that it is through all of you that we have made it. For those of you that couldn't make it, I wish you could have seen how angelic Erin truly looked. So rested and peaceful. Our oldest son Grant first words when he saw her on Monday were "she looks like a brand new baby, she doesn't look sick anymore"
He was right, I couldn't have said it better myself.

Thankyou to all of those who helped out for Erins vigil and funeral. Special thanks to those who couldn't attend beacuse they were busy watching my other children.

Time to go I have to catch up on the laundry and take down all the halloween decorations.

Missing you Erin!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Holli

-- Posted on Tuesday, November 2 2004

First I wanted to thank Tristan for leaving a beautiful entry. I know they are all having such a good time up there.
Secondly I want to thank the lord for bringing the sun out this morning. Yesterday was so cold and wet out, yuck!
We are all hanging in there. I'm afraid of whats going to happen once everything calms down. The boys asked me yesterday when Erin was going to come back alive. I hope I set their minds at ease. They have questions that are difficult to give an answer to. Mostly because I don't have the answers.
One more thing before I go and see my Erin for the last time, I just wanted to say how wonderful the funeral home has been. She truly looks like an angel. Everyone that saw her last night at the vigil agreed. They couldn't get over how beautiful she was. I always knew.
Its time to go, I have to look my best for Erin today. She was a girls, girl and would have wanted it that way. Anytime I would put my makeup on she would be right there in the bathroom with me doing the same thing. When I was done she would say "You pretty mom." Right back at ya Erin

Later

Holli

-- Posted on Monday, November 1 2004

Happy Birthday Erin!!!!!!!!!!

We miss your BIG BEAUTIFUL SMILE!!!!!

Love,

Daddy, Mommy, Grant, Luke, and Laura

-- Posted on Sunday, October 31 2004

Good morning to everyone. Thankyou for all your support. Its through everyone that we are making it during this time of sadness. We rejoice as well. For Erin is perfect now.

Erin's oldest brother, Grant is very curious and is asking alot of questions. He is just trying to understand it all. God bless him for trying. Luke our middle child doesn't dwell on it. When we told him he simply said "we need to put flowers on her coffin, because Erin liked flowers." He is a little concerned that she will miss trick-or-treating tonight. I assured him that she will get to go, only it will be done in heaven. His response was, "she doesn't have her treat bag." Oh how innocent and honest children are. Our youngest is only 18months old. She just gets a kick out of all the visitors that stop by.

Missing our Angel Erin

Chris and Holli

-- Posted on Saturday, October 30 2004

Visitation
5-7p.m. Monday Nov.1
St. Joseph's Catholic Church
Platte Center, Ne.

Funeral
10:00 a.m. Tuesday Nov.2
St. Joseph's Catholic Church
Platte Center, Ne.

Funeral Arrangements by McKown Funeral Home
2922 13th Street
Columbus, Ne. 68601

-- Posted on Saturday, October 30 2004

To some of you that may know and to many that don't....Erin no longer has cancer. At 9:15p.m. October 29th Erin got her wings and soared to heaven to meet Jesus.

We are going to be making funeral arrangements today I will update later. We are going to try and have her funeral on Tuesday.

Goodbye my Angel, Mommy and Daddy love you!!!!!!!!!!!!!!!

Chris and Holli

-- Posted on Friday, October 29 2004

Ups and downs, its like a rollercoaster. Erin didn't start off to good yesterday. By the afternoon she wanted to go out to her playhouse. So we did, although it didn't last more than 5 minutes. My sister and her husband came over last night. Erin perked up a bit. She sat at the table and colored and showed aunt Sarah her bedroom. Erin even ate a few bites of pizza. Poor Erin had such a good time she fell asleep on the couch at 8:00p.m. Thats early for her considering she got up from her nap at 4:00p.m. My husband always says "thats the nature of the cancer beast." The night was going well until about 4a.m. I had given her morphine around 3:30. She was still restless at 4:30. I sat on her bed with her. She settled down so I went back to bed. Sure enough 5:45 she was calling for me again. About every half hour after that I was back in her room trying to give some kind of comfort to her. That leads us to about 7a.m. Erin was sitting up in her bed coughing. I felt her pillow for some reason. Erin is very particular about being clean and dry. So when I found a wet spot I knew that was her problem. She wanted to go rock in the rocking chair. I sat her down in the chair and went into the kitchen to draw up her meds. Before I even stepped foot in the kitchen she was vomitting everywhere. I am used to it. But now she is to weak to lean forward and get it out. She was sort of choking on it. It all happened so fast its hard to gage how much she might have inhaled. I was right there helping her but I can only do so much. She has to have the strength to force it out before she can take a breath in between. She was coughing so bad afterwards I decided to give her a breathing treatment. Her cough isn't very productive. But the treatment helped some. She fell back to sleep while I was doing it. I put her back in bed and here we are. I forgot to mention that I cleaned her up after she got sick. But you already knew that. Right?

Time to go. The boys are up and already making demands.

Later

Holli

-- Posted on Thursday, October 28 2004

Wow sure am glad I made it through twenty-nine years. Bring on thirty. Thanks for all the birthday wishes, I had a good day considering. I spent most of the day wondering what Erin would be like at the age of 29. I guess I will settle for the age of 3 which is what she is going to be on Monday, All Saints Day. I had to have a
c-section with her. So Chris and I got to pick her birthday. Something tells me that Erin was meant to be born on All Saints Day. It makes sense now. Hopefully you all understand what I just wrote, I think I do.

Other news....Erin got sick twice yesterday. The hospice nurse called and said that she talked to the doctor and he suggested increasing her steriod. In the hopes that it would ease more pressure in her brain, thus causing less pain, so we wouldn't have to use the morphine yet. Well, I ended up giving her some in the afternoon. About two hours after I gave her her usual pain med. she was still lying on the couch grabbing her head and moaning. When the morphine kicked in she took a nice long nap.

Erin is not up yet this morning. She was up about three different times last night. Mostly she just wants me to lay in bed with her. By the time I get her meds ready and go back into the room she is already asleep. I pray for better days for her.

Later

Holli

-- Posted on Tuesday, October 26 2004

Good evening everyone. Chris and and I can't tell you how grateful we are to you all. From people lending a hand with work around the house to bringing food over even those who leave kind words in the guestbook. It means so much. Us leaving information to you is just as important as you leaving words of encouragement and such. Thankyou, I know I say(type) that alot but I don't know what else to say, hopefully you don't get sick of it.
On to the most important news, Erin. Another quiet day for her. She seems to be getting back on a good schedule. Like getting up in the morning around 9:00 and then having a nap around 1:00.
Erins nurse came today to evaluate her. She said her lungs sounded better but agreed that we could get her some stronger pain medication. Morphine is all there seems to be left for her. To us it is a type of closure(not a good one). Its basically backup meds. just in case she needs its, we have it. We finally decided to sign Erins DNR papers. For those of you lucky enough not to know what that means its Do Not Resicitate.
I wish I could end this on a better note but ....Oh wait I guess I could comment on the beautiful day outside. Erin was out enjoying it for a brief moment. The rest of the kids as well. Grant and Luke had their Halloween parties at school today. Each one came home with a ton of candy and a new idea for a costume next year.
Off to bed, I got a big day tommorow. Its my birthday, I will be 29..........seriously.

Holli

-- Posted on Tuesday, October 26 2004

hello all anyone wishing to read the story about Erins playhouse you can just click on the link below
http://www.columbustelegram.com/articles/2004/10/24/news/news1.txt

-- Posted on Monday, October 25 2004

I have a quick moment to give a short update on Erin. She has had a very quiet day. She doesn't seem to want to sit up on her own or move around much. She is on her second nap for the day. I had to give her a bath today because she has been going (#2) alot. She didn't want a bath. But I warmed up the bathroom good and laid a big soft towel in the bathtub for her to lay on. She smiled once when I turned the water on and it trickled down on her toes. I reminded her how much fun we had this summer swimming at grandpa and grandmas house. She agreed and said she wanted to go swimming now. We just pretended she was swimming again.
Her smiles ar few and far between but we take what we can get and hold on to them.
Later

Holli

-- Posted on Sunday, October 24 2004

Wow what a weekend its been. I'm so glad its Sunday evening and its quiet. The kids are all in bed. I just wanted to let you all know that the party on Saturday was a huge hit. We all had such a good time. Poor Erin was so wore out though. Today was the same. She didn't feel like doing much of anything. I have also been noticing lately that when I pick her up or change her diaper she cries like she is in pain. Simply moving her arms and legs around upsets her. I guess that will be a question for the nurse.
I take it most of you around here read the article in the paper. Thank you for taking the time to respond on Erin's website.
Time to go and get some much needed sleep.Later

Holli

-- Posted on Friday, October 22 2004

Hello, I have to start out by saying how grateful Chris and I are to everyone who helped make Erin's playhouse a success. Uncle Dave you are the master of carpentry. Uncle Tom, I hope you got your two cents in. There were so many volunteers that knew what they were doing I hope that they were all satisfied with how it all went together.
The booklet said that it would take 6hours and 30 minutes to put together if you had done it before. If we would have had the daylight I know those guys could have done it.
So here we are ready for the big party tomorrow. The playhouse is done. Extra thanks to Dave for coming back today. He about finished it all by himself. Uncle Joe, I haven't forgotten about you either,thanks.
We also had some sod laid today where we had construction done earlier this summer.Grandpa Roger Uncle Brent(our gopher) Uncle Jeff and Red Dog got all of that work done(what angels). All of these people took time off of work to come help us. You don't know how much that has touched us.
Thanks to all for bringing food over.
I suppose I should let you know how Erin is doing. At about 5 o'clock this morning she woke up with a fever of 102. She had been coughing most of the night so I figured it was time to call her doctors in Omaha again. This time we got an antibiotic. She has had a couple of doses so hopefully she will feel good for tomorrow. Other than that things went ok. I guess I'm kind of nervous for the fact that Erin usually sleeps all day, until about 3:00 p.m. sometimes she gets up earlier.Still it isn't right, and it only started about 4 days ago. Maybe it is the next step. It is so hard to say or even think what might happen next. I hate to say it but when Erin sleeps that late I am constantly checking to see if she is still breathing. That might be hard for some of you to take but it is one of the realities Chris and I have to deal with. Time for more good news.....Erin absolutely LOVES her playhouse. She is so proud of it. She keeps saying she wants to put her babies out in it. Lets hope she is awake for the party.
Later,

Chris and Holli

-- Posted on Thursday, October 21 2004

Hooray!!! Erins playhouse arrived yesterday. We got it unloaded off the truck thanks to Uncle Brent and Uncle Jeff. Daddy was a big help to. It was to late in the evening to start anything so we are going to get started on it this morning. Hope the drizzle/light rain lets up.
Erin had another crappy night. Once again I'm up at 5 o'clock with her rocking away. I cherish those quiet moments with her snuggled in my arms. I just wish I could get a few more hours sleep.
One more thing before I go. I want to thank Mary and Aaron our neighbors. They made supper for us last night and she watched to boys at her house for a bit yesterday.
Thankyou to grandma for pizza. I try and thank everyone who has helped out but if I forget to mention your name don't think we've forgotten you. I just haven't had enough sleep.
Later

Holli

-- Posted on Tuesday, October 19 2004

Where do I start. First of all Erins playhouse never showed up yesterday. I called Make-a-wish and they called the company it is coming from and somewhere down the line somebody messed up. It won't be here until Wednesday. The trucking company is supposed to call today to give us a time of arrival. We'll see what happens.
I probably already mentioned this but Erins cold has settled in her chest. She didn't sleep much last night. She was up about four different times. At around 5 o'clock this morning just before I gave her a breathing treatment she got sick(vomitted) all over herself and me. She felt very warm to so I decided to take her temperature.
I think she is going to need some antibiotics because she had a fever of 102.7. I gave her some motrin. It seems to be working but I just got back from taking the boys to school and haven't checked her. Our hospice nurse is going to be making a visit this morning hopfully she can give us some insight as to what we should do(hospital stay?) We need to clear up whatever she's got as fast as we can.
Its time for me to go, Erins doctors in Omaha need to get a call from us this morning to.
Later

Holli

-- Posted on Monday, October 18 2004

Good Monday morning to you. Erin has got a cold. Her brothers brought it home from school. It has settled in her chest. She was up at 2:30a.m. coughing and complaining of her head so I gave her some pain meds and then some cough medicine to loosen her chest congestion. As soon as she is up for the day I will probably have to give her a breathing treatment. I gave her two of them yesterday. They seemed to help.
On an up note, her playhouse should be coming today sometime. The company we are receiving the playhouse from never called this weekend to give us a specific time of arrival. I just hope it is early enough to get a good start on it today.
A HUGE THANKYOU to grandpa and grandma Bettenhausen for watching the monsters on Saturday night. Chris and I really needed to get out alone to reconnect. Being at home with a sick child is very stressful and demanding. A break once in a while is a great relief.
It was good to see my cousins at the barn dance Saturday night. Thankyou all for caring so much. Keep up the prayers.
One more thankyou to our neighbors for bringing over the goodies. Meals are sometimes hard to come by around here. I do the majority of the cooking and when Erin needs me just to sit and rock her I don't get much done.
Speaking of not getting anything done. I should go while she is still sleeping and do some laundry. Later

Holli

-- Posted on Sunday, October 17 2004

Hello to everyone. Thought I might do a quick update. Erin is sitting on my lap as I type this. She hasn't left my arms since she got up today at 2:30p.m. It is understandable because her night wasn't so good. She was up at 4 o'clock this morning. I gave her so medicine but it didn't really seem to help much. It took so long to start working. Three hours later I had to give her more. She finally seemed to rest comfortably around 8 o'clock and moved back to her own bed. The couch just didn't have enough room for the two of us.
So here we are at 4:35p.m. and Erin has just told me she wants to take a nap. She has only been up for two hours.
I guess I will continue later.

Holli

-- Posted on Friday, October 15 2004

I'm just going to drop a quick note to everyone. First I would like to say thanks to all who have visited Erins website. You can't know how much it means to us. Second, I would like to say thanks to Cathy H. for bringing the pizzas by the other day. Last but not least, Erin was tired and crabby yesterday. I guess those last few days of playing outside finally caught up to her. Make-a-wish called last night and gave us some good news. Erins playhouse will be here on Monday instead of Thursday. So we will be busy this weekend getting ready for that. There is also a family reunion we might be attending, depending on how Erin is feeling. I know the family would all love to see her.
Well I got to go, we have a man coming to measure for carpet this morning. What a relief it will be to finally get the addition done.
One more thing, Thanks to Steve and Chad for putting a rush on getting our kitchen floor done. It looks great.

Later.........................
Chris and Holli

-- Posted on Thursday, October 14 2004

Just a quick update on Erin. We have had a great week so far. The seizure medicine seems to be working. Her headaches are under control somewhat. The morning is about the toughest time of day. Once the meds kick in she can get up and play.
Make-a-wish expects her playhouse to be here next Thursday. We are all excited for that. Erins uncles are going to put it together. I hope everything goes as planned.
Thats all for now.

Chris and Holli

-- Posted on Monday, October 11 2004

I am going to try to make this short. Erin had a rough end to a pretty good weekend. Friday night started it all. One of our neighbors dropped by to show us their 3week old baby. Erin was soooo happy to see him. She loves babies. But as she was sitting at the kitchen table coloring she started to tremble. Then her whole body was shaking. It didn't last but maybe a minute or so. The first thing I thought of was a seizure. That night at about 4 o'clock in the morning the same thing happened. Saturday morning was the same situation. She finally slept good Saturday night. Only waking up once. Sunday was a good day to. But Sunday night at about 7p.m. I was holding her when she started to complain about her head hurting. Seconds later her eyes rolled back and she went limp and stopped breathing. Chris and I were not prepared emotionally for this the first thing we thought was that, this is it. But I blurted out call 911 and then did so. As I was on the phone with the operator Erin started to breathe on her own. Faded in and out a couple of times then came to. By the time the paramedics got to our house she was fine and all her vitals were normal. We called her Hem/Onc doctors in Omaha. They said she has probably been having seizures. We decided to put her on some medication hoping it will control them. Her first dose was tonight. Phenobarbital(sp) is what she is on, if anyone needed to know. Today Erin was quite happy, she played alot. Her cousins Blair and Kendra came over. My sister Suzanne made us supper, bless her heart. It was very good. A BIG THANKYOU to my aunt Suz and Grandma Marilyn. They both helped out today on spur of the moment doctors visit with Erin. Another big THANKS to those visiting Erins website. That is all. Goodnight.

Holli

-- Posted on Friday, October 8 2004

Well Erin had a milestone today. She used her walker, the one she hadn't used in week. It is nice to have a few good days after the rough ones a few days earlier. She still is not sleeping very much maybe four hours a night. It is almost like having a newborn again, because when everyone else starts the day she is finally comfortable enough to fall asleep again. We will make it through it(Thank the lord for caffine)
Make a wish called today. They said the playhouse Erin is supposed to get won't be ready to ship until the 15th of October. Finally arriving the week of 18th to 22nd. They suggested rethinking the playhouse. They want Erin to be able to use it. Since we don't know what each day brings we might change her wish to something she might enjoy more NOW. Her headaches take over a large portion of her day. Sometimes she don't feel like going outside to play, or moving off the couch for that matter.
It is time for me to go to bed and get some sleep before Erin decides to wake up for the night. Later.

Holli

-- Posted on Wednesday, October 6 2004

We have had a very busy year and a half, sorry we haven't updated in a while but here is what happened from April 2004 through today.
April 29th a MRI was scheduled because we were finished with chemo. A new tumor was found on Erins occipital lobe. Surgery was on May 6th one year to date of her original tumor. We were out of the hospital two days later she recovered remarkably. We decided to hit the new area with radiation. Six weeks worth of the nasty stuff. In the process Erin contracted a port infection, so with only about a week to go we had to replace her port with a temporary central line. We finished up radiation and 3 weeks of IV antibiotics and took it out. An MRI was to be scheduled about 6 weeks after to check tumor site. Around August 4th we were concerned with the way Erin was walking so we decided to bump up the MRI. No good news was to come. There was a new tumor. This one was in the front of her brain between her two lobes. On top of that, the radiation we had just finished up did nothing to the old tumor, it had grown. Surgery was not an option for the tumors. The only thing we could do was more radiation with no guarantees on any good results. It also meant a new central line and more time away from the family. Erin had already undergone 60 days of radiation to the original tumor site and then the second. It was an extremely tough decision. But with the help of alot of praying and talking to our family priest we decided Erin had been through enough. We have been enjoying our days at home as a FAMILY. Its something we haven't had much time to be.
Most recently Erin had to have her feeding tube replaced. Headaches have also started to set in so she is on some good meds for that. But the pressure from the tumors have caused vomitting. Not to worry, we started her on another drug to help with that. She has also started to tilt her head to one side. These were some of the symptoms she had when we first found her tumor a year and a half ago. So that leads us to believe the tumor on the brain stem has returned. We don't know for sure, nor will we ever because no MRI's are scheduled. It would be pointless. We are trying to limit trips to the doctors and just enjoy.
The good news if there is any, is that we are coping. Through the help of family and friends we are making it through this difficult time. Our oldest Grant started kindergarten. Luke our second is now in preschool. The baby, Laura, who was only about 3 weeks old when we found Erins first tumor is now a very lively 18month old. As I type this, their love hate relationship is being put to the test. So I must end and hope to keep you all informed.

Holli