1 Year + 190
1 Year +190
This day is forever ingrained in my memory. organizations for medical camps or to receive a wig, etc, often ask for a diagnosis “date.” I always struggled with that as Tates diagnosis was slowly revealed over many years. But I guess this is essentially the equivalent. I struggle to process that this is only two years ago as we still feel the pain and fear that took on a new level this day, but also recall the hope we held for transplant.
Transplant is essentially considered a “fail” in the big picture. In a dialogue shared this past week with Tate’s beloved hematologist, transplant served as a reset and did rid Tate of the bone marrow cancer. There are victories in that. We see things progressing again but don’t really know what is around the corner or how quickly things will move. The key is to keep Tates organs all functioning as optimally as possible. Tatum’s team is continually trying to come up with new ways to slow and God willing, stop the progression. We are grateful for that.
Day 44:
Tonight we’re sad. Mourning the loss of good health of the little girl in the photo while holding tight to the same girl next to me whose body is her worst enemy.
A meeting today with Tates hematologist and a care conference with her team led to some really hard news. They believe that the mosaic trisomy 8, will ultimately take Tate’s life. Treatments are at a dead end and as her bone marrow converts the remaining healthy cells to trisomy 8 she will continue to get sicker. We are seeing that process occurring as her pain continues to progress. The only option is bone marrow transplant and we are told it will be difficult. This disease functions like cancer and will be treated as such. Due to Tates poor GI health, it won’t be a matter of “if” she develops infection but rather “when.” Missing even a cell through the transplant prep will cause it to fail, so the plan will be to hit her hard with the strongest chemo and prep regimen.
This changes our pain plan. We are no longer so concerned at getting her off narcotics, and making her functional, but rather keeping her comfortable and as healthy as possible until transplant. We had the option tonight of admitting to ICU for a specific pain regimen only approved there or to try and add a fentanyl patch. We’ll try the fentanyl first.
Timeline depends first on her team all being on board (most already are and the rest are just receiving the new information) and then the donors timeline. We’d love to get home first but it’s dependent on pain and even then they’re thinking of moving her straight into the BMT unit to keep her from picking anything up prior to transplant.
This is a lot, and we are exhausted trying to process. Tonight we’re sad and tomorrow we step forward and follow Gods lead. Thank you for all the prayers.