Week 5

Week 5 has not been going to well. Kylee ended up in the hospital late on Tuesday night. Kylee was in Milwaukee with my mom and nurse Teresa. I got a call at 10:45 pm (I was sound asleep and couldn't figure out how to answer the phone) saying Kylee was at the ER and they needed my permission to treat her. So of course I couldn't dial my mom fast enough to find out what was wrong. She was running a temp of 101. They did labs and her WBC was very low and her ANC level and platelets were also low. As well as having a very irritated head from the radiation (it was very red and felt like it was on fire) and a bad diaper rash. So she went in patient had a transfusion and some shots for her WBC and a million blood test and found no reason for her fever. So on Saturday they told us we could leave but we had to stay at the Ronald McDonald House so we could bring her back if anything would change. They also said to try and keep her out of the ER as much as possible as it is full of germs. They said they would rather we call them and go to the oncology clinic or right to the HOT (cancer unit) then to go to the ER. We got a extended stay room at the McDonald House which is nicer. It has more room. Collin also came down for a few days and we took him to the Milwaukee Zoo. He really enjoyed it. School is starting next week for him. First day of Kindergarten for him. Kylee will be missing her first week of school but we are hoping she will be there for the next week. We are hoping to do dual services for her (both school and homebound) so if she is to sick to go to school she would still receive therapy at home. I have to talk with the school and we will have to have a IEP to discuss it.
Other then that nothing new to report. We were suppose to be done next week but because she was sick we will be adding on after Labor day to finish her radiation up. Then we will get a 4 week break before starting chemo. The talk is that they don't feel she will be able to handle chemo but Kylee always likes to surprise the medical field so I hope she proves everyone wrong.
A few weeks ago I joined a support group in Appleton for people with children with special needs. I really enjoyed my time with them. They meet the 2nd Monday of the month and they meet for drinks first (that is my kind of group). I knew 3 moms that were there but met many more and learned so much from them. It is nice to be around other people that know what your life it like. Everyone gets cancer because everyone knows someone who has had it but not everyone understand what life it like with a disabled child.

**You never know how strong you are until being strong is the only choice you have**