June 29, 2013
Wow. I think I could win the title of world's worst blogger! I'm so sorry I haven't updated here in ages. I update the blog FaceBook page, as well as InstaGram and twitter, daily but have sadly neglected the blog.
So here is a catch up post on Will and his recovery! I'm going to do bullet points to help keep my thoughts straight!
*Today is day +17 and we are still in the hospital (no surprise there). I'm guessing we will be here for probably 2 more weeks. As of today Will has still not engrafted. Typically, engraftment occurs between days 14-21 post transplant. As of now, there is no way Will will engraft within that window of time. In order to be officially engrafted, Will's ANC must be above 500 for three consecutive days. Will's ANC was a measly 20 today (0.02 on his lab paperwork) so we've got a ways to go. If we do not see his ANC increasing by Monday (day +19) we will start a drug called GCSF. GCSF is a white blood cell stimulant that will force his marrow to create white blood cells which will increase his ANC since the ANC is a white blood cell component. Receiving GCSF is pretty common for BMT patients (Kate received it) and we are hoping it is the boost Will's new cells need to start taking over and multiplying!
*The first engraftment study will be sent off on Monday. This is a blood test that looks at the DNA of a sample of blood cells and compares them to Will's DNA and his donor's DNA. It will let us know what percentage of donor cells are currently present. We are obviously hoping for a very high percentage of donor cells! Will will probably have a bone marrow biopsy within the next week to see how "full" his marrow is. As his donor cells begin to take over, and produce healthy blood cells, Will's bone marrow will start filling up and looking healthy!
*Will has started on stronger antibiotics due to red blood cells in his urine. There is a chance that the RBCs are present due to the BK virus so he was started on these antibiotics until we receive the viral study from his urine sample. Will's doctors are being extra cautious with any type of kidney/ urine issue given his history of kidney reflux and UTIs.
*TPN and lipids (IV nutrition and fat) are still being given 18 hours a day. Will has not been able to keep anything down for over a week now which resulted in his nutritionist increasing his TPN from 12 to 18 hours a day. We are hoping that Will starts to eat again this week. As soon as he is consuming enough calories by mouth, we will decrease his TPN again. We are also hoping that we can completely wean him from TPN before we head home. However, I realize there is a chance he will come home on TPN - I just hope he isn't on it as long as Kate was (Kate was on TPN for nearly 80 days).
*After two very hard days (day +12 and day +13) filled with lots of crying, minimal sleeping, tons of fussing, lots of vomiting, and extreme discomfort, Will turned a corner and has had great days since Wednesday! His energy levels are back to normal and he is so busy running all around the BMT unit! He even spent time pushing a toy grocery buggy (that was filled with weights) around the floor! It's so great to see him back to his happy go lucky self! I'm hoping this boost of energy is a sign that his new cells are starting to take over.
*His mucositis appears to be healing. One of Will's doctors believes that we haven't seen engraftment yet because his new cells started fighting off his awful mucositis first. Since we are seeing an improvement on the mucositis front, we are now hoping all of those new cells settle into Will's marrow and start their official job of making new, healthy blood cells!
*Will is still receiving platelets and red blood on a very regular basis. We are having issues with platelet availability. Will is CMV negative which means he needs to receive CMV negative blood product. Apparently this makes things more difficult. On Thursday there were literally no compatible platelets in the entire city of Houston. We had to bring platelets in from north of Dallas. If anyone in the Houston area is B+ and willing to donate platelets for Will, please email me! There is no way to know your CMV status until after you donate but if you are not a match for Will, your platelets will go to another person in need. Alex was donating for Will but his CMV status converted last week (from CMV neg to CMV pos) and he is no longer a match for Will.
*Kate flew to Mississippi last week with her Bebe and is having an absolute blast! We sure do miss her but I am so glad she is having some fun with all of our Mississippi family!
I promise to get better at keeping the blog updated! Hopefully I will have good news in the next few days about engrafting and such!! And hopefully we will start doing things to prepare Will to go home. I know one of the biggest boxes to check is taking oral meds. This is a HUGE struggle for Will right now as he cannot keep anything down. So we would appreciate thoughts and prayers for not only engrafting, but for Will's ability to start taking medication by mouth so we can prepare for the next phase of his recovery!