Raylee's Home

Great news! Yesterday afternoon Raylee was discharged from the hospital. We didn't think the surgery team was going to let her leave. Raylee's surgeon went on vacation days ago and gave us his personal cell number and told us to call or text him if we had any questions or concerns. We almost called him because it seemed like every morning this surgery team had a different reason why Raylee wasn't ready to come home. However they finally discharged her so we didn't need to call him.

Raylee came home with the NG tube and feeding. She is connected to it 24 hours a day. One of the home health nurses came and showed me how to operate the pump and change the tubing and food bag. It hangs on an IV pole in our home inside a little backpack designed for it. We can also go anywhere since it fits snug in the backpack. It is actually really easy to do. It is another thing I never thought I would ever need to worry about let alone know how to do. Raylee has the catheder still and will have it at least until next week.

We have more great news! Yesterday morning a board of oncologists had a meeting discussing Raylee's treatment and they recommend NO MORE CHEMO! We are so happy about this! They recommend extensive monitoring which means CT scans ever 3 months and probably blood work. Our first follow-up CT scan and clinic (oncology) appointments are next week. This also means Raylee's central line will be removed. This must be removed by a surgical team. The central line was left in for a few more days until this scheduled CT scan is completed so Raylee doesn't get an IV to inject the dye, it will save her from getting poked. Also we will have an appointment with the urologist who will run some tests on Raylee's bladder to ensure there's no chronic damage from the tumor.

Follow-up appointments will become part of Raylee's life and ours. I feel like I will anxiously.wait for them because I will always fear the cancer will return; especially if she gets a belly ache I will be scared it's back. I want to see the CT scan next week to really believe that it is gone. The last 3 months feel like 12 months. It is amazing how you lose track of time.

I am so proud of Raylee for being a fighter and having her strong will. She is a trooper, a little cancer fighting soldier. My heart just aches for all the other little troopers who are going through this, especially the ones who will leave their families and friends to fulfill a purpose in Heaven. What sweet angels they are. I never thought this day would ever come. It is a miracle we are done with Chemo because normally children with stage 3 Neuroblastoma receive 8 rounds, Raylee had 2. Also some children in this intermediate stage need 2 rounds of post surgery Chemo. I was scared Raylee would receive more. The grace of God is with us and His will was that Raylee would survive this with a quick treatment plan--well quick compared to most treatments, it didn't feel quick to us. Through Jesus Christ this was possible and I don't know how to thank Heavenly Father for allowing His beloved son to carry Raylee through this, because we know He did. I don't know how to thank Him for all of you for being our advocates and being there for us, or for all the thousands and thousands of prayers that were for Raylee and my family. The only way I know how to show my thanks is to allow this ongoing experience to change me for the better. There were times I was mad at God for allowing my child to be this ill and the only way to make her better was to posion her and have surgery. However, I know in all things there is a purpose and Raylee must have been extremely valiant in the pre-existance to be able to handle such an illness as a child. The anger I felt is normal and probably healthy in some way, it may show itself at times as I still have a lot of growing and learning to do from this experience. I want you to know however, that I never did stop relying on Him no matter how bad some days were, and I always knew that His will would be done regardless if it was what I wanted. One thing I know, I couldn't have ever gone through this alone and my family couldn't have either; my strength and faith isn't strong enough. Because Raylee is so little I often think this is more of a learning experience for Jerry and I than for Raylee. This great news hasn't sunk in all the way, I am sure once Raylee doesn't have all of these tubes hooked to her (she has 3) it will feel more real. Also once I see the tumor free CT scan, I can celebrate and my heart will be at ease. She has at least 2 more months to go before her immune system is considered normal. So once it's normal we need to have a huge celebration! :)