September Updates

Katie continues to be very irritable and the doctors were concerned that it might be a side effect of more pressure in her brain or something in her stomach. She had a CT scan which showed the vessels were a little bit larger (not a good thing) and they don't want to put in a shunt because the surgery would be very risky with her low platelets. They will continue to monitor this and do another CT scan on Monday.

They did an x-ray of her stomach, which didn't show anything abnormal. We are kind of worried about her getting more pressure in the brain. This is such a roller coaster ride. We would be happy to just know she was stable for a day, but something always seems to go wrong.

Its getting very hard to stay strong and at times we feel we just cant take it anymore and then we look at our children and continue to fight for them.

Thanks again to all the people who have continued to donate money to my mom at Afternooners, Walnut, my friends from Boystown-thanks for the gift certificates, Wal-Mart-where my Grandma works, City of Grand Island and many, many others. The support has been so overwhelming and we are so grateful to everyone. Grandma, Grandpa and big brother Tyler are here for a couple days. Its so nice to see them.

Our daughter continues to fight everyday and we thank God everyday we have her. You just never know. Live each day as if its your last and have no regrets.

We send all our love to all of you out there who have been so supportive.

We live it one day at a time and look forward to a better day tomorrow.

Scott and Wendy

Katie has been running a temperature since late Tuesday evening. They are changing one of her antibiotics since it is giving her a rash. The new med she received late last night around 11:00 p.m. and she had a reaction to that. She got the shakes and started to breathe hard. They say that is a common reaction to this med so they gave her demerol and it was fine. Her rash is pretty much gone, but she is still running fevers.

They take blood cultures daily and have not found any infections on them yet. She is on an antifungal med also. Her counts are starting to go up, which is what we want. Once they are all up we start the chemo all over again, but this time it will also be injected into her spine to kill the cancer cells and also into her central line.

She started to make baby sounds like infants make, but no words yet. She does laugh and smile on occasion, when she is not being poked at. Auntie Trish is up for a few days which helps a lot. I miss everyone in Grand Island and cant wait to get out of this place. There are so many sick kids up here. We met a family who has a newborn with heart problems in ICU. We went and saw him last night and his chest was open. They couldn't close it until today and he looked pretty bad.

We find ourselves trying to keep other families positive with words of encouragement, when we can hardly keep it together ourselves. We have our days.

Our daughter is doing things they told us she would never do. She is making great strides and progress daily. She is a fighter and will fight this cancer. Its going be a long road or like to social worker says, like climbing a mountain with no shoes on. God is healing her and we are leaving it in his hands. If he was going to take her he would have done so the day we had to make the decision about life support and DNR when her brain was swelling and affecting her breathing, which would mean she would have been on a respirator the rest of her life.

Now look at her today.

She was brought to us for a purpose and will outlive all of us.

Love, Scott and Wendy

Words cant say enough how much we appreciate the support and prayers from everyone. I still cant believe that this is happening to my baby girl. Its so hard to see her suffer like she is. She's the biggest fighter I've ever seen. She's got a lot on her plate right now, we just pray that she makes it and opens her eye's and breathes everyday. Its a fight for survival for her ever hour but she continues to fight. Please tell everyone back at work thanks for giving me time so I can be by her side ever minute. Its so nice to hear from people back at home please just tell people to give blood and tell them not to forget about our Katie girl.
We love and miss you all and thank you from the bottoms of are hearts.

Scott & Wendy
 

Scott and I are so overwhelmed with the outcome of the fundraiser for our little Katie girl. First, we want to thank the "Katie's Crew" for all of their time and energy into getting this prepared in only a weeks time. You guys put your heart and sole into this and for that we are forever grateful and have no words to describe how much you did for us. To all the businesses who donated items for a little girl they didn't even know. Its such a great feeling to know that Grand Island can really come together in a time of tragedy. We wish we could thank each and every one of you individually for what you have done. Even strangers who don't know Katie, but wanted to help out with anything they could and for their donations. Every day we read the comments on the site and it keeps us going with hope and strength that she has so many people pulling and praying for her. THANK YOU TO EVERYONE who reads her site, sends donations, prayers, words of encouragement, cards, phone calls, visits and blood donations. Thank you to all of the City of Grand Island employees who have donated their vacation time to my husband so that he could be here with his little girl during this trying time. We are forever grateful.

Now for the update, we are still dealing with the day by day scares such as fevers which she has at least once a day. She has now developed a rash over her entire body, which the oncologists think is an allergic reaction to one of her antibiotics she is taking to fight off the infection since her white blood cells are so low. They took the tube out of her head today which was amazing. Her brain is not swelling so they felt safe to take it out after watching it for a couple of days being clamped off. She did okay when they pulled it out. They put a numbing cream over the site, but that's about it. That seemed to be a relief for her and one less tube for her to pull at. She is getting very upset lately and we don't know what is wrong because she cant talk. She loves to be held and loves to play peek a boo. Not sure how much she can see, we will be getting a test sometime set up by the eye doctor. She is such a fighter and is being so strong through this. If it wasn't for Dr. Gardner, I seriously don't know where we would be if he hadn't found the tumor in her tummy. He is an angel and we are so grateful to him. Keep the prayers coming. One last thank you goes out to my mom and dad who have been caring for my son Tyler and in her words "has become a mother again at 51 years old". Couldn't do this without them and they have been so strong for Tyler who is dealing with this just as much as we are. His life has been turned upside down. So please pray for my son also and give him strength to understand this as much as a 5 year old can. Thanks everyone for you support.

WE LOVE YOU ALL. Love, Scott and Wendy

Today was a pretty peaceful day. The pressure in her brain looks good, so hopefully that tube can come out Monday. She seemed to be more irritable today and cried a lot more, which they say is good. She stood up for a while with daddy's help and started to pull her socks off her feet (it's the little things that keep us going). These are good signs that she is getting more movement. Her blood cultures show no infections growing on them as of today (they test them over a week and a machine checks every hour for something to grow). Aunt Colleen came to baby sit for us while we went out to eat. While we were gone, her right side of her face started to swell up a lot and Aunt Colleen and Jo insisted that they do a CT scan immediately, which they did and found that the vessels have not changed. The neurologist has no idea why this is happening and why its swelling in her face. She didn't run a temperature today. All of the family went back today for the fundraiser tomorrow. We will have a pretty quiet day Sunday. Its so nice to have visitors to talk to. The oncologist said she will probably need some blood tomorrow. Katie is so weak and hurts all over and cries when you touch her. Cant imagine what she is feeling. Its hard to start physical therapy with her when she is in so much pain. She is fighting this and will overcome it. She is sleeping peacefully now and we are going to bed. Thank you for your continued support and prayers. We look forward to looking at your messages daily. Its so amazing how strong these kids are up here. I think its tougher on the parents than the children. We sincerely love each and every one of you. I hope the fundraiser is a success for all of you who worked so hard on it. I don't know how we can ever repay you all for everything. Love Scott and Wendy
 

Her CT scan looked good today and showed that the vessels were doing what they were suppose to be doing. The doctor did not take out the drain in her head and would rather wait until Monday just to be safe in case something did happen and they would have to go back in and that would cause a problem with bleeding because of her low platelet counts. She did receive platelets today. She did not need any blood. Katie started to actually cry and make tears which we have not seen since this nightmare began. They say its a good sign, but as parents, its killing us to hear her cry and there is nothing we can do about it. She ran a temperature today so they are running cultures on her blood and we haven't heard anything yet.
Most of her hair is gone and it is becoming very itchy for her and falling out everywhere. She has been very uncomfortable today and had a very hard time sleeping. This is getting harder everyday and I pray to God to carry us through this. No one should ever have to experience this, but being here and seeing all these sick children really make you think twice about what is really important in life. I took so much for granted and always thought things like this happened to everyone else, not us. We have learned a lot about ourselves and our inner strength. We will carry on for our baby and God will lead us in the right direction. Love and miss you all. I cant believe how many of you actually take time everyday to check our daughters progress. That is so special. We truly love all of you and miss you. Come visit when you can. Wendy and Scott PS. Jay, you have done so awesome with this site and we have received so many compliments on it, which all go to you. THANK YOU from the bottom of our hearts for all your time and energy you have put into this. If you see Jeremy, please let him know what a special thing he is doing with this site.
 

Hey everyone:  Katie's neurosurgeon came in today and was pleased with the tube draining her pressure being clamped off and if she is still doing okay tomorrow, they will remove it.  The physical therapist came in today to work with her and sat her up in a car seat and showed us how to move her legs to keep them mobile.  We had to buy special high top boots so she wont get drop foot.  They gave her a new medicine which she needed relating to the chemo (not quite sure what it was) and she had a BAD reaction to it. 

Within 15 minutes she was shaking so bad and her reparations went up along with her blood pressure.  It took a while for me to get a nurse and finally I think I had the entire team in here.  Then she started to turn blue and them developed a temperature.  They immediately stopped the medication and gave her benedryl and after about 30 minutes she was okay.  She gave me the biggest scare I think I have ever experienced.  She is so itchy with her eyes and it keeps her up.  The eye doctor came in and will schedule a special eye test which can determine if she can see or not.  The nutritionist came and we will be going for a test where we will try feeding her foot and they do a x-ray of some sort to see how the food is traveling down and if she is able to swallow and digest her food.  We have met a lot of neat people here who have been an encouragement to us.  Some of these families have been here so long and truly understand what we are going through.  Tyler is still having such a hard time seeing his sister like this.  The child life specialist talked to him a little bit and was very awesome with him. 

Tomorrow is a new day and we can only hope each day will get better and better.  Daddy and Aunt Tricia gave blood at the blood drive here a couple days ago, Aunt Jo tried and she failed since her iron was too low.  She was so disappointed and tried to give the Red Cross volunteer her sticker and free shirt back.  Tyler is staying with Aunt Colleen and Grandpa Randy tonight.  They are both so gentle and patient with him.  We will continue to stay strong for our little angel, but we have our moments.  It seems when those moments occur there is something that happens or someone who comes to talk to us that makes us feel better.  God is watching out for us.  God bless all of you who read this site and check is daily.  We have such a angel who has touched so many people in her 18 months of life.  God is

carrying her and us and we can only hope and wait for the best,   Love you

all.  I wish I could thank each one of you individually.  You each have something special to offer and we are so blessed to have all of you.  I know we say that a lot, but I really want all of you to know, even the ones who remain anonymous and send prayers, that each one affects us for the better and have made us stronger and encourage us to believe in miracles, which my daughter has already proven she is.  Good night to all.  Thanks to all the fundraiser crew for all your tireless efforts on planning this for us. 

Brian, you had this idea and cared so much to get this going for us and we love you for that, along with all the rest of you.  Take care of your family and keep praying,  Scott and Wendy

Hello, Katie had her CT scan today and it looked good so they clamped her tube in her head all together and will wait to see what happens. Hopefully, we can get it out yet this week, otherwise, she will have to have permanent shunts put in. Tyler, Grandma and Grandpa came today. Tyler is having some problems with acting out when he is up here, I think its to get our attention, but its so hard to see him and wandering what he is really thinking about all of this.

Katie has not had a temperature today and she did not need any blood or platelets today. They are talking about getting a nutritionist to come and see what to do about feedings since she cant tolerate her Pedisure through the tube, which has not been placed back yet. They say she is getting all her nutrition from the IV so they are not concerned about it.

The physical therapist came today and they are putting some special foot braces to prevent drop foot and will be working with her on rehabilitation. All of the staff here is great and take good care of our Katie. She smiles a lot lately and her face is very itchy from the antibiotics so she is getting benedryl for that.

Overall, a pretty good day. Its getting pretty stressful being up here all the time and we are now considered "hospital parents". I miss a lot of things that I took for granted. You just don't realize what you have until this happens. I wish we could go back to before, but we can't and our lives are forever changed.

Once again, thank you ALL for your cards, e-mails and time and energy in this fundraiser. We are truly blessed to have such wonderful support and so many people who care about us. Please give your kids hugs and kisses and cherish the time you have with them. We love you all. Keep us in your prayers, you are all definitely in ours. XOXOXO.

Wendy and Scott
 

Katie had a pretty stable day on Tuesday.  She seemed less active than previous days, but this could be a side effect from her pain medication. 

They will continue to watch her for any fevers due to infections.  So far, no fevers.  She got spoiled by G-pa Randy yesterday and gave a lot of smiles to us.  She is starting to lose her hair so we took a piece to save and braided it.  Mommy then went to the nearest mall and cut her hair off and had a piece saved to put with Katie's.  That way we can grow our hair back together.  She is scheduled for a CT scan this morning to check the brain pressure.  Grandma, Grandpa and big brother Tyler are on there way today and will be staying until Saturday.  Aunt Trish left today which was really hard for us.  We know everyone has to get back to their families.  We left the hospital yesterday and went to Aunt Colleen's house.  The object was to take a nap, but we couldn't and felt we needed to get back.  G-pa Randy babysat and spoiled her rotten.  Not much else new just watch her progress.  The doctor said it could take up to 6 months to totally recover from the strokes.  Only God knows her plan and we are not in control.  Keep praying, we love you all.  Thanks to all of you for all your hard work on the fundraiser.  You guys have been so awesome and devoted to this.  Brian, our PR guy, thank you.  Keep sending your prayers, they are a breath of fresh air to read at times when we feel so alone here.  The staff is great and taking good care of us.  Love you all.  Wendy and Scott.  Also, I wanted to thank Jeremy Cameron for this site as he works so hard to keep it updated and send us the prayers.  Thanks Jay.

Our Katie had a pretty good day today.  They decreased the drain in her brain and they did a CT scan and the pressure in her brain is about 3 which means her body is absorbing the fluid and the neurologists are happy with the way that is going.  She pulled out her feeding tube yesterday morning, That is not a big concern since she can't tolerate food yet. therefore, it was only being used to give her medicine for her fever.  Dr. Thompson, her oncologist was in yesterday and explained the chemo and what to expect. 

Katie's last dose of Chemo for the first cycle was yesterday.  Now we wait, give her blood when needed and platelets, which she could need every other day.  She did not have a temp yesterday, which is GOOD since her count is so low.  They have been keeping her on the morphine, which really helps calm her and helps her sleep.  She woke up today with a swollen face on the right side.  They don't think it has anything to do with the brain pressure, maybe just that she slept on that side and with all the fluids they are pushing through her caused this.  The doctor talked about her working with a physical therapist soon.  She tried really hard to get up last night, but not enough energy.  Everyday she seems to improve and we think some of the feeling in her face is coming back,  No one will know any time soon the extent of what damage the stroke caused.  I truly have faith that she will surprise all the doctors and recovery fully from all of this,  I am sure of that.  Just wanted to tell everyone again how blessed we are to have all the support and prayers for our Katie.  Your thoughts and prayers keep us going when we think we cant do this anymore, but we do it for Katie. Katie will have a lot of stories to hear when she grows up and hears about all the support and special people that she has in her life.  We truly love you all and keep praying, its working, because each day we have her here with us is a true gift from God. 

   We hope everyone can attend her fundraiser on September 25 at 11:00 am at Stolley Park School.  There have been over 60 businesses around GI who have donated something.  Scott and Wendy

Katie has had a pretty restful day.  They finally found a medication (Morphine) that seems to calm her down and let her sleep.  Her blood counts are way down.  They would like to see them  500, hers are at 7.

  She has had a lot of of visitors, but the nurses gave her a time out because her heart rate was going way up.  They think she has an infection somewhere and are culturing her blood.  On a positive note, she did give daddy a smile and has been getting up on all fours and lifting her head up on her own, even while on the morphine. She seems to be getting more and more movement everyday, but we are still unknown of the damage to her brain. 

  Only time and God will tell.  We just want to thank everyone for the outpouring of love and support that ALL of you have given us, whether by prayer, monetary, hope and faith.  We consider all of you to be her angels.

We have to take this one day at a time and that is the only way we will be able to get through his.  Everything happens for a reason, we just haven't figured out why this could happen to our perfectly healthy little angel. 

Tyler, her brother, has been having his ups and downs and doesn't understand All of this, but who does.  ALL of your prayers are helping my angel get better, so keep them coming.  Give your kids kisses and hugs all the time and cherish what you have, because you never know when something like this could happen, and hopefully it will not happen to any more little angels.  Live each day as its your last .  We love you all and couldn't do this without you.  Love, Scott, Wendy, Tyler and Kaitlyn.

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