February Updates

We are all doing fine here.  We are meeting with the speech therapist today to go over a plan for Katie's care.  We also have to meet with Tyler's school today for a conference since we have not really had one yet.  Katie is adjusting fine to her new living environment.  She is playing all the time and eating us out of house and home.  We go Friday for her checkup in Omaha.  Thank you nurse Lisa for sending us Katie's eye patches.  They are very cute...   We miss everyone in Omaha.  I will try to do weekly updates since we don't have a computer right now.  Love you all.

Well, we are adjusting to home life.  It is getting easier every day, but still a little overwhelming.  Katie is having lots of fun playing with her brother.  When he goes to school, she seems lost.  Tyler is very glad to be home, however, he misses grandma and grandpa a lot.  We are trying to get Katie to drink more so she will not have to be hooked up to fluids at night.  She is doing better, but we still have some work to do.  Thank you all for your prayers.

We arrived home Tuesday at 2:30 p.m.  We were busy all day putting things away and visiting with friends and family.  Tyler was surprised to come home and see his family there.  Katie screamed when she went into the house.  I think she thought we were at someone else's house and we were leaving her.  She did okay sleeping last night in her own bed, however, she did get up about four times screaming, but she did okay. 

Today I had to call everyone and go through all my bills.  Its been very overwhelming to say the least.  Social Security might not be able to pay very much per month because we may make too much.  Ya right... Their idea of too much and ours is totally different.  To say the least, we are totally screwed financially and we have no idea what we will do.  We didn't have to worry about any of this before, now reality sets in and its hard. 

We do not have a computer at home so I will be updating as much as possible from my mom's house.  Thanks again to everyone for their support and concern.  Love you all. 

Well, I cant believe I am saying this, but WE ARE GOING HOME TUESDAY.  Her counts went up to 280 and they stopped her antiobiotics since she has had negative cultures for over three days.  We only get to go home if her counts go up and not down tomorrow, which they could fall, but hopefully not. 

We have had to say a lot of hard goodbyes to the wonderful nurses and care partners.  They have become like family to us.  Lisa Hansen-you have been with us since the beginning.  You have always been there for us when we really needed you and you cared for Katie as if she was your own.  You will always have a special place in our hearts...  all of them will.  This place is full of wonderful caregivers and we will never be able to thank them enough.  They all loved our daughter as if she was their's. 

This place saved our Katie's life and we are forever grateful for that.  Now we go home and try to carry on as normal as possible.  Katie's counts will still be really low so we wont be able to have many visitors for a while.  I hope everyone will understand.  Since her immune system is so low right now, anyone can bring in an infection and she could get really sick.  We will be coming back for a clinic visit at the beginning of March so we can get blood work and get her IVIG (which helps her immune system recover).  She will have her central line in for 3 months and she will be scheduled for a bone marrow biopsy in a couple weeks.  Thank you to all of you who have helped us through this experience.  We couldn't have done it without all your help and support. 

Katie's counts are now up to 100.  Her fever is gone and her blood cultures have not grown anything yet.  The doctor wants her to stay on antibiotics until her counts are up to 500.  Katie is now the featured artist and her artwork and picture are displayed proudly on the wall on 5th floor. 

Well we have good and bad news to report.  The good news is... after over two weeks, she finally has an ANC of 60.  The bad news... She spiked a temperature today of 102.00, therefore, they had to take blood cultures to see if she has an infection.  We should know more by tomorrow, but in the meantime they went ahead and started her on two antibiotics.  They also gave her a boelus over an hour to get her more hydrated.   I pray that this is not an infection, but there is not much we can do about it.  We are sooo close to coming home.  We will update as soon as we know more tomorrow.

Katie still has an ANC of 0, but any day now they should go up. We did get some exciting news today. Katie was asked to be the featured artist for 5th floor. This means she will draw a picture and they will display it on the wall in the hallway for a couple weeks. Her picture will also be placed right next to the picture. She has been working all day on her picture and we think we picked out our favorite one. They will be coming tomorrow to take her picture. I want to thank Leslie, Kiffin, mom (Elaine), Aunt Cathy, Aunt Sue, Rhonda, Deb and of course Tyler for working all afternoon and cleaning our house so its ready for us to come home. That was so nice for all of you to take time out of your days to clean our home. We really appreciate it. We are so lucky to have such wonderful family and friends.
Pray for our counts to come up.

Happy Valentines Day. Katie received lots of cards and the oncology nurse, Lynette came by and brought Katie a puppy toy and some tattoos. No ANC again today, but her white blood cells are up to 200, which means her little body is trying hard. We are trying to get her to drink more fluids so we don't have to have her on an IV when we go home. Katie has been very irritable today, which I think is just because she is almost 2 and thinks she knows all. She is getting pretty bored playing in this small room all day. We are so ready to return home. We want to thank Bob and Jeri Harness for their monthly donations to our account. Hope you know how much you are helping us . Thank you sooo much.

Katie had a great day today. She has been doing so well considering she has to stay in the room the entire time to avoid germs in the halls. She still does not have an ANC, but the doctor informed us that when her ANC gets to around 200 then we can go home because there are less germs there and its better for her to be home rather than the hospital. Its hard to say when her counts will start to come up, but it could be any day. We just have to wait.
 

We had a pretty quiet weekend here. Katie received a blood transfusion on Saturday and a platelet transfusion today. Her counts remain at 0, but her white blood cells are coming up slowly. Her hair is coming back fast and it is completely blonde like her daddy's when he was little. We met another dad on our floor whose 6 year old was diagnosed with AML on November 8, 2004 and they came back last Tuesday with RSV and they did a bone marrow biopsy to be safe and discovered he had relapsed with AML so they will have to get him into remission and then he will have a transplant. They were suppose to go to Disney Land for their Make a Wish on Saturday:(     This family has a wonderful attitude though. Well, we will update again soon.

Katie received platelets today because they were only 18, which is the lowest they have ever gotten before. Not much other news on this end. We are staying in our room all day because 2 maybe 3 (currently being tested) of our cancer friends have RSV and it is very contagious. Tyler is here so we will enjoy the weekend as a family.

Katie had a pretty good day today. Her platelets are low, so she will get a transfusion tomorrow. She continues to be fever free so far... The neurosurgeon came and said her MRI looked good, but she has developed a cyst where they drilled in her skull to place the shunt, but nothing to worry about. The doctors think we will be out of here in a couple weeks.

Katie is getting the cutest blonde fuzz hair on head and her eyelashes are finally growing back too. Just a sign to us that this is almost over as when her hair fell out when this began. The hair thing is really not significant to anyone else, but to us its special because its a physical sign that the cancer was here and is now GONE. You cant see cancer, so I guess them losing their hair is the only true sign that its even real.
 

Katie had a long day today and decided she didn't want to take a nap. The doctor said she is starting to produce some mono's (not sure what they are), but that means she is trying to build up some counts.

Tyler has strep throat so he wont be able to come here for a couple days. We planned on picking him up today because school is out the rest of the week, but he will stay with Grandma and Grandpa and get better. Our wonderful nurse Erin made Katie some window stickers and she played with them until bedtime.

We are still waiting for the neurosurgeon to come in and tell us the results of the MRI she had more than a month ago, but we were told that he doesn't have time right now?????

That's all for now. Pray for her counts to recover soon so we can finally come HOME..
 

Katie continues to be fever free so far. Her counts are still 0 so she is a little cranky at times, but that's to be expected. The doctor said RSV is going around here, so she insisted we stay in our room and Katie can only go to the playroom and not to have her in the hallways for any other reason.
Not much else new here. We will just hurry up and wait to come home....

Katie has had a good weekend. Her counts remain at 0 so she will probably be getting a fever anytime now. They took a culture of her blood today because her temperature was so low because sometimes cancer patients cant muster up a fever so their temperature is really low, which happened to her a couple months ago. Tyler came up for the weekend and she had a good time playing with her brother.

Katie insisted on continuing her party today and since the cake was gone, Daddy had to to the store and buy some cupcakes. She had her IVIG today and they had to run it over 8 hours to prevent her usual reaction to it. They also premedicated her with benedryl and Tylenol, which really seemed to help. After that was done at 6p.m. so had some platelets and had no reaction to them either. Katie has been a very grumpy girl today and nothing seems to make her happy. Speech therapy is working with her again and it seems to be going well so far.

On another note, we would ask that everyone say a little prayer the family of Art Orndorf, who passed away of cancer today. Him and his wife, Bev, are best friends of my parents and have been for as long as I can remember so keep his wife and his children in your prayers today. He is now in heaven and no longer suffering from his horrible disease.

Katie had her final chemo treatment this morning at 6 a.m. We went and bought her a cake with balloons and made her a big sign. She really enjoyed the cake and ate about 4 pieces today. The other exciting news is that Katie is getting little fuzzy hair back on her head and her eye lashes are coming back too....

Not much new happening. She seems to be handling the chemo pretty well and definitely has her appetite back. Went to the playroom this evening and decorated her room for Valentines Day.

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