Danielle: Thursday morning we had scans and Tayden did great! He woke up around 5:30 am with a huge smile and was ready to hit the road. His strength amazes me. He didnt complain, he didnt cry, just smiled and said lets do this!. Hes one brave kid. So here we go. Bare with me because it has been 3 days of endless questions and endless answers. Before we left the hospital on Thursday our doctor came in and said that the white blood count went down from 458 (from his last spinal tap) to 11. Oofta! Keep in mind that from what they could tell, almost all of those 458 white blood cells last time were cancer cells. In fact, his cells were so damaged that when they spun them for biopsy most of them would break. So to hear 11 was a huge relief. However they still had to be biopsied to see if all, some, or none were cancer cells. Later Thursday night we got the call that % 60 were cancer cells, % 40 were clean. We can work with this. Its only been two rounds of chemo and for it to have dropped the WBC count that much is terrific! Then came the news that there was some enhancement (swelling) on the meninges (on his brain). Which there was on the last scan, but it seemed to be larger this time. The enhancement would be caused from cancer cells. So we were confused, if the cancer cells are down significantly, why is this happening? Our doctor contacted another pediatric oncologist in MN to get her insight and a plan B if we needed one. She was impressed with the reduction in cancer cells, but she too was concerned about the enhancement of the meninges. She recommended that we continue with our regimen as planned because it could take a couple more rounds to see the meninges improve. Again, we were relieved. This MN doctor is highly recommended by our oncologist and we will be taking a trip to meet with her in the near future. Hopefully after chemo week. Our doctor also discussed a trial being done in New York. We will discuss it more with him in person on Monday and possibly plan a trip to New York as well. We will see where all of this takes us. I dont care where we have to go or what we have to do, its worth every minute. Tayden is worth it all. They also noticed his ventricles were enlarged a little so they contacted our neurosurgeon from Chicago, who placed Taydens shunt, and he advised to watch it for now. His shunt may not be draining as much fluid as his brain is making. So if need be, then we will adjust his shunt setting again to keep up with the flow of fluid. Also, these past couple of days Tayden has been vomiting again. Usually after he has a round of meds. We informed our doctor this morning when he called and we asked for an xray to be done to check to see if his NJ (feeding tube) possibly moved from his intestine to his stomach. We are crossing our fingers that this is the issue since it can easily be fixed. I want to thank each and every one of you who thought of us on Thursday and those of you who prayed for our little warrior. Were far from in the clear. But we feel much better knowing we have a plan for now and options if needed. We will not give up this battle. Tayden is a strong boy and an amazing child. He deserves everything I have in me, and I plan to give him exactly that. Much Love - Danielle
Posted on: Sun, 24 Aug 2014 03:36:12 +0000
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