Weve had a change of plans and arent being admitted until Wednesday afternoon/evening. The reason for this is on Friday they got another HVA/VMA urine sample and we are awaiting the results. We would like for Waylon to continue on Cyclophasphamide and Topotecan for the remaining cycles but the way the protocol is written, his MIBG and HVA/VMA must meet certain criteria, otherwise courses 3 & 4 are with Irinotecan and Temodar. His HVA/VMA have to both be within normal range to continue with Cyclo/Topo and one is but the other is just slightly over, so they got another urine sample to see if it will be in normal range. Medications and food can cause the numbers to vary slightly, thus repeating the test a couple of days later. Since weve seen such significant improvement with Cyclo/Topo I REALLY hope we get to continue with these chemos. Also, today I got to see the images of Waylons MIBG scan. When looking at both the front and back of his body on the planar images there are no spots that can be seen and when its side by side with the image before we started treatment, the improvement is very noticable. The only way the spots are detected is through SPECT imaging which is basically taking horizontal cross-sections of Waylons body (small slices from head to toe). The report states there are a few areas of questionable uptake and then lists the cross-sections where the spots are found. His curie score is a 4, but while its only improved by 1 since the last scan, its not a true reflection of how much significantly less disease is in his body. This is due to the way in which the score is derived. I think this is one time Im not as concerned with the number as I am with the actual images :-)! After being on this journey for 2 1/2 years (Nov. 21 will be 3 years), I feel lke we are finally starting to see the light at the end of the tunnel and I am so happy. These results just reaffiirm St. Jude is where we need to be and our family will get through this. Before going for the evening, Id like to ask everyone to say a prayer for my friend Karen Walleck and her son Latham. Latham was declared cancer free last year but as of today it was confirmed there are 2 nodules on his lungs that are concerning. He will have surgery next week to remove them and will then find out exactly what they are. The waiting is so hard as we try to keep our minds busy. Love, Stacy
Posted on: Tue, 22 Apr 2014 03:22:03 +0000
Trending Topics
Recently Viewed Topics
© 2015