December Updates

Katie had a pretty rough day today. She has been consistently running pretty high temperatures. Infection Disease changed one of her antibiotics so we will see what happens. They took some more blood cultures to see if she still had the infection growing in her bloodstream. She has very limited energy and doesn't want to do anything but lay around.

The doctors say its normal for a central line to get infected a lot and it just happens. They will put her new line in sometime next week. Her shunt is not infected as of today and thank goodness for that.

Have a happy new year.

Katie has been running temperatures of around 103.0. Her cultures came back and showed that she has e coli in her central line. I know that sounds weird and we thought the same thing but I guess your gut produces it...

She is currently on two antibiotics now and Infectious Disease will probably change them tomorrow again. She had to have her central line pulled out for the third time which is very painful for her. She also had to get an IV put in her foot. That only took about 4 pokes this time. She has to get finger pokes daily to check her CBC and last night she was poked at 3 a.m. and 5 a.m. to check her levels for her antibiotics. Then the neurosurgeon came in at 7 am and tapped her shunt which is getting a little needle stuck in the top of her head directly into the shunt to get fluid out to make sure its not also infected since it was so close to the central line. So far, that has not grown anything. She also received platelets last night and of course had a reaction to them and started to shake, even after they premeditated her with Benedryl.

Needless to say, it was a bad day. She is really sick now and hasn't played or ate in two days. I don't think I have seen her this sick since she was in ICU. Well, that's all for now. Keep the prayers coming.

Well, we are back in the hospital. She started to run a low grade fever at Colleens house on Tuesday evening so we came to the hospital around 8:30 p.m. The 5th floor was full, so we are temporarily on 6th floor in Room 611. Once they have an opening, we will move back to 5th floor.

We just found out that Katie has an infection in her line again. Its the same as the last two infections so she will have the line pulled out and an IV started for 5 days until the line can be put back in. She has definitely not been herself today and has been laying around all day. Even though we only have 1 more round of chemo, Katie is NOT better or out of the woods. We have to worry about infections in her line, shunt or other places when her counts are down. Also, her cancer can come back anytime when we go home. She is in remission, but by no means all cured. We have a long road ahead of us.
We will for sure be here until her next cycle starts.

Please keep us in your prayers and pray this infection clears us. Love you all.

Well we made it thru Christmas without being in the hospital. We are at Aunt Colleen's house and are having a good holiday with their family. We have been so blessed this past year and also been through the toughest year of our lives. We look back on what has happened to Katie these past couple months and sometimes it still feels like a nightmare we are going to wake up from. We made it though and we still have our little girl and we are so thankful for that.

Its amazing how your life can change in a day without any warning. Katie's illness has also brought a lot of blessings to our lives also. We have met so many amazing families who have taught us about courage, strength, survival and hope. We have also been blessed to get close to family members who we weren't so close with before. Our friends and family who have always been special to us are a little more special this year because of all their support and love they have given us. You have also kept us hoping, prayed with us and for us, listened to us, cried with us and laughed with us and for that we are forever grateful.

We have learned so much about life and how quickly it can be taken from you. We never truly understood or cared to understand the importance of cancer research until now. There are so many sick people fighting this disease and they need help. If you can, please give a little money for cancer research so someday a cure can be found and less lives will be broken when they lose a loved one. If you cant give money, please donate your blood and save a life.

We have also been blessed by complete strangers who have sponsored our family for Christmas and gave our family gifts so that we could have a Christmas this year. The oncology department at Methodist Hospital was a group that gave us the wonderful gifts and also Children's Health Care Services who also gave us lots of great gifts. Thank you to both these groups for making our holiday special. Also, Project Harmony, which is Aunt Colleen's work, has given us so many wonderful gifts and money and we are so grateful for everything they have done for us, even though they had never met us until last week.

While our future may be unknown at the time, we certainly know it will never be the same, but we will adjust and do what we need to do for our little girl's health. We want to thank you all for everything you do for us. It would take forever to list everyone who has helped us so I apologize for not naming everyone. We are so blessed to have such caring people around us and we don't know how we would do this without any of you. God bless you all.

Katie continues to feel pretty good. Her counts have not dropped yet. We will be leaving the hospital on Tuesday to go to Aunt Colleens house until she gets a fever, just like last time. We are excited to leave this place for a while.

These last two rounds of chemo are suppose to be the hardest on her since they are a lot stronger than the first three. We both plan on staying with her thru the last two rounds because anything could happen with her. Scott plans to go back to work sometime in February if everything goes okay.

We should hopefully be done with all this by then and back home. We pray that we can stay out of the hospital until at least Christmas. Thank you to everyone for your cards and gifts you have sent to us. What wonderful friends we have.

We will try to update whenever possible. Keep checking and praying for us. Love, Camerons
 

Pretty quiet weekend here. Tyler came here with Grandma and Grandpa for the weekend. Scott and I have been sick so its been hard to take care of Katie, but we are managing. Not much new with her. She has been doing well with her new chemo drug. She will be done with chemo on Tuesday and then the plan will be to go to Aunt Colleen's house for the holidays or until she gets a fever or infection. One more round of chemo to go and then we are DONE. We cant wait to get back to normal, if that's even possible. Our lives with never be normal, but we will make due with whatever life throws at us. We will be taking a lot of trips to Omaha for weekly checkups and blood work.

We finally have a Christmas tree here. Our friends from Lincoln, whose child also has AML thought we needed a tree. They are so sweet. Well that's all for now.

Well we found out today that none of us are a match for Katie if she would ever need a bone marrow transplant. Not sure if any other relatives could be matched, but I think they will be looking in the donor bank for a close match. We are pretty upset about it, but we knew our chances were slim.

Katie has not had much of an appetite. She is running a temperature again today. They think its from the high dose of chemo she is getting in the morning. Tomorrow they will be starting a new chemo drug that she has never got before so we hope she doesn't react to it.

We pray for a better day tomorrow.

Katie did well with her spinal tap. Scott and I stayed with her in the surgery room until she went under, otherwise, she gets really upset. Her IV chemo started at 11:00 a.m. She did okay with it until after
supper when she threw up all over the place. Now she has a temperature about 101.0 so they will do blood cultures and see if she has an infection or if its a side effect from the chemo.

Santa Claus came for a visit today and she let him get close enough for a picture.. Thank you to our Home Federal Bank and all the wonderful people there who sent us up cards and presents for Christmas. Also, to Kiffin and Tony Harness for selling the candles for Katie's medical expenses. We appreciate the time you put into that. Also, to Matt and Bob and all the guys from Scott's work for working on the bathroom. To Verne and Patty Penas for their huge contribution and work on the bathroom. WE APPRECIATE ALL OF YOU AND WORDS CANNOT EXPRESS HOW GRATEFUL WE ARE FOR EACH AND EVERYONE OF OUR FRIENDS AND FAMILY FOR THEIR SUPPORT.

It's times like this when you truly know who your friends are and we have the most amazing support system anyone could ever ask for. If it wasn't for the City of Grand Island donating Scott time, we could not both be here to lean on each other during this most difficult chapter in our lives.

Katie's counts are finally up above 1000 so we start chemo tomorrow. She will have her spinal tap at 9:00 a.m. and her chemo will start after that.

We asked about getting the test results back to see if Tyler was a match for her bone marrow and the lab said they have his blood work but have no one to compare it to. Come to find out, we never had Katie's blood taken for this reason or ours. So they took blood from all of us today and we should find out the results on Friday. I am such a baby so I had them put numbing cream on my arm, just like they do for the kids up here. Well, I can honestly say it worked and I felt nothing. I wish they could use that when they have people donate blood...

Scott had a good birthday. We got to get out tonight and Aunt Colleen watched Sis. We came back and Aunt Colleen had Katie's crib all decked out with Christmas decorations. She tried to get some Christmas pictures, but I guess Katie wasn't having any of that. God Bless you all.

Not much new today. Katie's counts have stayed the same as yesterday, but her white blood count is coming up. Tomorrow is Scott's birthday so if you see him, wish him a happy birthday. I got him a cake and Katie seemed to enjoy it more than anyone. Sorry, but not much to report tonight. Have a good day. Happy holidays

Katie has been a ball of fire today. She keeps us on our toes that's for sure. Tyler went home today. Katie's ANC is now at 537 so she can officially stop her antibiotics since we reached the magic 500 mark. The doctor thinks she will be able to start her next cycle as early as Wednesday. She will have her spinal tap, but no bone marrow biopsy this time. This next cycle has a new chemo drug so we pray that all goes well for Katie girl.

I want to thank Matt Kennedy and Bob Hansen for working sooo hard on our bathroom to get it finished for when we come home. I think Matt has been working all weekend on it, which we are so grateful for. Scott's co workers have all been so great to us and have went above and beyond what we could ever ask for. Thank you from the bottom of our hearts.

Please pray for Katie and all the other children who are fighting cancer. We have known so many families who have lost their children to this disease.

We thank God everyday for our little angel.

Pretty quiet day again today. Katie's counts are at 360 so we will be staying in the hospital until her next chemo cycle. Tyler is a hero. He has his blood tested to see if he is a match for his sister in case she would ever relapse, he could donate bone marrow. We wont find out the results until next week. It takes a lot for a 5 year old to voluntarily have a needle stuck his arm. We are so proud of him. So if you see him, please tell him how special he was for doing that. We have a 1 in 4 chance that he is a match so we will cross our fingers.

Thanks again to everyone for their donations on the website. It will help the kids have a great Christmas this year. God bless to all...

We had another quiet day today. Her counts are slowly coming up and are now at 200. The doctors are not sure what they are going to do about her central line. It might be leaking a little, but they don't want to do surgery because her counts are so low.

The Lancers hockey team came to visit us and gave Katie a gift. She wasn't sure about them. Scott and I attended the Candlelighters Christmas party this evening. We went to the wrong party and ended up at the doctors annual party with shrimp and all that fancy stuff. Whoops.... We finally made it to our party and had a good time. Katie stayed in the room and played with Aunt Jo and Colleen.

We want to thank everyone for their gifts and money for us to have a good Christmas. They are very much appreciated. Lots of love.

Katie had a visit from Santa Claus and some Marines. She didn't cry as we expected but didn't want to get anywhere near him. The eye doctor came and looked at her eye. He wants her to wear an eye patch over her good eye for about 5 hours per day. By doing that, she will have to use her bad eye and hopefully gain some of her muscle back in her eye. She wasn't too thrilled about it at first, but later became use to it.

Her counts are still around 180. Also, her central line broke when we were taking her out of the high chair so Scott had to clamp it off with his fingers until the nurse came in. Blood went everywhere and finally we got it clamped off. We then went back to the procedure room to fix the line, which was successful with a little bit of glue. They can't guarantee it won't get infected now since it broke so we will have to cross our fingers.

Katie enjoys her car rides around the floor and loves to go really fast. That's about all for now.

Hello. Another quiet day today. Katie has not been eating near as much as usual and we are not sure why. Her counts are only 120 today which is still pretty low.

Santa Claus will be coming by helicopter tomorrow and will be visiting the kids around 10:30 a.m. Hopefully, Katie is not going to scream at the sight of him. We are enjoying our video phone which the hospital provided for us to use with Tyler. We can see him and they can see Katie and what's going on here.

We are very grateful for all our friends and family for their continued support through this nightmare. As we don't know what the future may hold for our family, we do know that time together is so important and we cherish every moment we get to spend together as a family.

This year Christmas has a new meaning to our family.... Love you all..
 

We have had a pretty slow day today. Katie's counts are at 100 and continuing to climb. She will continue to be on her antibiotics until the 10th of December. We asked that a neurologist come and see her about her eye not closing and constantly being red. Not sure if she can see out of her bad eye or not. The cultures from her line have not grown anything as of yet.

Continue to pray for our little one..

Katie has had a pretty quiet weekend. Tyler came to visit us and she always loves to see him. Her line has been leaking fluid so they cultured it today to see what it was. Her white blood cells are finally coming up and her platelets are holding where they are suppose to be. She received blood on Friday and had a little reaction to it. She ran a low grade temperature so they gave her benedryl and she was fine. You can sure tell her counts are down because she has little energy and gets very grumpy.

She has been doing well with feeding herself. That seems to be her favorite time of day is when the food comes. Otherwise, we have had a very quiet weekend.

The Coca Cola bear came to visit and bring gifts, but of course she was napping so he left her a bear, cup, book, baseball and helmet. Please remember to donate blood and save a life.

Love to all.....

Katie had a few difficulties today with her surgery. She received platelets right before surgery and when I went to pick her up from her bed to take her to the OR, her line broke and the platelets started pouring all over the bed and myself. Then they had to check to see if she received enough platelets before her surgery so they had to check her levels. After checking, they said her platelet count was high enough. Finally, they moved her surgery up and she had it done at 10:00 a.m.

Since she was brought back up from the OR, her central line site has been bleeding and wont stop so they have to call the resident again to see what to do. She has also been confined to her bed because the doctor wants her hooked up to the heart monitor for 24 hours after the surgery. She is on morphine for the pain which seems to help a lot. We are very glad to have the line back, which also means no more finger pokes every day because now they can take the blood from her line.

Her counts are still at 0 which is to be expected. We pray for a better day tomorrow.

We want to thank Randy and Theresa Cameron for sending us monthly checks to help us out with our bills. We really appreciate it and are very grateful for your help.

Also, thanks to everyone for their continued support and prayers. Lots of love

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