Jaeden had another bone marrow biopsy on April 11th. We went in this morning for the results. The positive: the amount of minimal residual disease (MRD) went down again from .27% last time to .084% this time. The negative: it is still not low enough to move forward with the bone marrow transplant. In order to do that, the MRD needs to be at .01% or lower. 

We went in with low expectations today because it is just too painful to have much hope. We have been so devastated the last couple of times. Obviously, we still are frustrated and upset about it, but at least all of our hopes weren’t completely shattered today.

The plan going forward has not quite been finalized yet. It will likely look similar to the treatment that Jaeden just had - Dara, Methotexate, and maybe some other chemo meds that he’s had before. He also started the oral chemo med Venetoclax this week, which has been going well so far. He starts the other one, Navitoclax, tomorrow. Those have proven to be helpful in T-ALL cases, but are still experimental. Jaeden’s oncologist had to get special permission from the FDA and the drug companies to use these medicines for Jaeden’s treatment. 

Jaeden’s cancer continues to be very stubborn and aggressive. If a clinical trial opens up for pediatric patients in another state, his oncologist may recommend that Jaeden participate in that, but our hope is that we won’t get to that point. We aren’t sure how long this next round of treatment will be, but it probably will be on the shorter side before they do another bone marrow biopsy. Once Jaeden is at .01% or less MRD, we’ll need to move quickly with the bone marrow transplant before his cancer mutates and multiplies again. 

We so desperately just want to move forward…the amount of time it is taking to get rid of these last stubborn cancer cells is mind boggling!

Jaeden’s care team will be keeping a close eye on him in the coming weeks and checking his counts frequently, as the oral chemo meds, along with the chemo infusions, can cause his numbers to go down quite a bit. Thankfully he’s in a good place right now with his hemoglobin, white blood count, platelets, and ANC.

Thank you everyone for your continued love, support, encouragement, well wishes, prayers, and positive vibes. It all means more than you know. Hard to believe it’s only been about 7 months of this insanity so far…it feels like a lot longer than that. 

Onward and upward (or downward, please, for the MRD percentage 😂)!

Love,

Annalise