On the Road to Recovery

Lately it has been difficult to blog regularly. I am so tired and exhausted to the point that my bones ache. Some of my own health issues already cause fatigue but only having an average of 4 hours a sleep at night is not helping matters; and these 4 hours are not consecutive. Raylee hasn't slept very well since we brought her home from the hospital. It is like having a newborn baby that can walk and talk....well actually run away from you, scream at you, push you away, and throw things at you. Raylee hasn't been very happy lately. Like I said before it is like she is having withdrawals and the bladder medication she is on causes problems sleeping. Jorja said the side effects of the medications should read, "Causes trouble sleeping for the entire family." LOL. I thought that was funny. We definately need to find something to laugh about these days. Raylee isn't on any medications right now except for her antibiotic, which she takes because her immune system isn't quite strong enough. Her oncologist said it takes at least 3 months for the bone marrow to heal after the last Chemo then her immune system should be back to normal. She doesn't want to take the medication and puts up a fight but I just tell her I know you don't want to take it but you have to. Then she usually takes it. We still mix them with highly concentrated snow cone syrup-Raylee likes the Grape, Wild Cherry, and of course Tiger's Blood flavors.

I was able to go to work this week. Raylee is recovering well despite the lack of sleep so I went to work. Jorja and Raylee are watched by their grandma Patty who they adore. Being with grandma and going to grandma's house has helped both of them. Little by little, day by day, Raylee does a little better at night. Let me try to explain how horrible her nights are. She would scream and cry loudy for about 2 hours for her mommy, daddy, and Jorja even though we would be right there. She would scream so loud I was sure the neighbors could hear her. She would usually finally fall asleep around 2 am and then wake around 4 am screaming and crying again. This meant if anyone in the family had fallen asleep at any time they were woken up by a cry that reflected terror. Raylee would be so scared and confused. She never wanted to sleep in her bed, she wouldn't want you by her, and she would run through the house until she found a corner to hide herself. We would panic because she would run, in the dark, carelessly because she was somewhat asleep still and we feared she was going to hurt herself. If you grabbed her she would kick, hit, and fling her body around. I never knew she could be so strong! She is stronger then me! If we tried to hold her she would scream, 'NO, Let me go!' If she could find anything she could lift she would throw it at you. It was just like she was possessed by a little demon child because this behavior is nothing like Raylee. She really is a happy child. She has a lot of anxiety and fear but it is starting to get better. She will now sleep in her bed (you usually have to lay by her until she falls asleep) and she isn't having the night terrors at the same degree as she did this last week. Jerry said 'There is light at the end of the tunnel.' Yes there is, but has been and still is a really long tunnel. I have never had my patience tested at this level but I know that Raylee will recover and be more like Raylee.

Yesterday Raylee had another ultrasound to check her bladder and kidneys. Last week fluid wasn't draining from her kidneys so her urologist wanted to check on them. They are doing so much better as there is only a little fluid in one kidney but they appear to be functioning and draining well. They taught me how to cycle her bladder. This basically is clamping the tube from her catheder every hour so the bladder can fill with urine and then you unclamp it so it releases. This will help the bladder muscles begin to fill full because when someone is cathed all the time like Raylee is right now, the bladder doesn't get the full feeling which it should. This will help wake up her bladder. Then next week we have a possible additional ultrasound and bladder test which is done through same day surgery because she will be sedated for it. We are hoping Raylle will not need the bladder test but if she isn't able to potty on her own she will. Either Tuesday or Wednesday the catheder will be removed to allow her body the ability to try to go on her own. :(

It definately has been a rough and long week but it was mentally good for my girls to spend time with grandma like they use to, and pychologically good for me to go to work. My co-workers and management have been so great to work with through this. Jerry's have been as well. We are really fortunate because I do know some people that when their child was diagnosed with cancer and they missed a lot of work they were let go. Although I was going to work with as little as 4 hours of sleep a night it really was energizing in a way.

Jorja is really excited and having trouble sleeping as well. Her's is because of the excitement of school starting next week. We met her teacher this last week and explainrf what Jorja has been through this summer and explained if she is really tired one day it is because her sister screamed all night. Her teacher is amazing. She told Jorja if she is ever tired she can go to the office to the sick room and take a nap, or, if she just needs to talk they can just talk. Jorja's class is the gifted class, although she isn't labeled a 'gifted' student she does really well in school. We are so excited for her to be in this class. Each student has their own computer on their desks with a flat screen monitor. It must be part of a pilot program this year. Jorja is trilled about this rare experience and will learn how to operate computers better. I am excited for her to simply be in school, be around kids her own age, and to be a kid!

This road to recovery is going to be a long bitter-sweet ride for everyone. It has been difficult trying to get our lifes back to normal. It is going to take as much energy to change our lifes again as it did to except Raylee's illness. At least we are not going through Chemo anymore---it definately could be worse! I would rather deal with a child suffering through night terrors then Chemo! I would rather deal with taking her for many many follow-ups then staying another night in the hospital. She is such a little trooper! It makes me feel so good inside to know that her recovery, and ability to defeat cancer, is inspiring and making so many people happy!