September 7, 2024
Sept 7.
Three years ago…the memory below is the day that brought both the terrifying and hope.
A year ago…a care conference, we were told transplant, although a “reset” and currently life saving was ultimately a “fail” from a whole systems view.
Over the last couple weeks, we’ve received more information that essentially supports the above. It takes time for internal conversations to happen before public ones can. A lot of days this feels like a long, grieving process.
But, we’ve been blessed in so many ways. We have a team that has figured out some major bandaids that continue to be life changing, e.g. the implanted pain pump. We learned on Wednesday, at Tate’s pump refill, that they have 3 other kids since Tate that they’ve implanted pumps for pain who also were tpn (artificial/iv nutrition) dependent who now are eating orally as well. A beautiful, life changing, unexpected, benefit! We are so grateful when not only Tate benefits through our “tests,” but other kids too.
And, we are getting so much better at planning for and striving towards life giving events and moments. We truly cherish what’s in front of us. Last night I took the girls to a beautiful outdoor venue, with a Rocky Mountain View, to see a concert. For my dog AND music lover, it feels worth every ounce of energy needed to enjoy it.
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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.