Sorry that I waited so long to update. Today started out being busy right from the start. Cardiology came by and discussed some new medications. The cancer doctor came in and looked kaidence over. He looked over her blood test from last evening and feels that she is making enough RED blood cells and that definitely points us in a better direction for now. He said that some cancers only affect the WHITE blood cells but at this point he still feels that it is medication or virus related. He will continue watching for signs otherwise and only do the bone marrow as a last result. We will keep it in the back of our minds. Big sigh of relief for today. I enjoy and savor the days that bring good news in case I need to bottle a little sweetness for the next day to keep on hand. These road bumps are good realtiy checks for us. It sure keeps us counting our blessings. It helps remind us that things could always be worse. They took Kaidence off a med called Cellcept. They had the big transplant meeting this morning with all the surrounding hospitals and discussed the issues with Kaidence. I think that all the transplant docs around must know a lot about my daughter. They feel that the Cellcept is a very likely source. They took her off and hopefully her immune system will stay suppressed enough without it so that she doesn't go into rejection. At this point rejection is less risky than no immune system. We are on super precautions with Kaidence to keep her germ free.
We did some feeding therapy with Kaidence, but it is going to take a lot of time and work to get Kaidence eating like she should be. It brings me a lot of frustration because so much is involved in something that you and I don't think twice about.
Kaidence looks great and she is happy as usual. Hopefully her blood test will look better tomorrow. Thank You Traci and Mikayla for the "Rainbow Cafe" gift card. You are right, it does get very expensive. I have never had one of these before and it is a blessing to me, so thank you for thinking of us.
Thank You everyone for your prayers. We depend on them. I think I will sleep much better tonight.
Danny's Birthday
4 weeks ago
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2 comments:
When we had Ryker up at Primary's, it seemed it was hard to feel blessed, or to be grateful toward what your situation was/is. But then, we would think that there is always someone who has it harder then we did, and that we needed to just be grateful and realize that we were blessed to just have him. Now we do not have him here on earth, but I am grateful that he no longer has to suffer, as watching a child suffer is the worst to see as parents. I felt the same way with Lilly. I guess what I am trying to say, is to continue to keep your chin up, that your family is truly amazing and this too shall pass. You have an overwhelming amount of prayers in behalf of your family. We pray for Ryker's heart buddies nightly. Take strength in those prayers that are said in your family's behalf. We love you guys!
Ryker's and Lilly's Mommy and Daddy
I hope that they will find out what is making Kaidence's white count drop soon. Cancer is definitely a scary word. Cohen is still up at PCMC in ICS so I'd love to come and see you if that is ok. I understand how scary visitors with Kaidence are at this time so we can meet somewhere else. Let me know; my email address is ashee003@yahoo.com.
Take care. My family will continue to pray for Kaidence and your family.
Love
Ashley Wiley
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