Treatment Considerations

Thanks for your continued prayers for Ava and the Lee family.

As you know, the cancer journey involves a lot of nerve-wrecking waiting. We have been waiting to see how well Mylotarg worked. We are waiting for Ava's counts to recover, for her ANC to show signs of an immune function returning. We are also waiting for the results of her bone marrow biopsy, skin biopsy, PET scan and lumbar puncture. With no immune function, it is highly possible for the test results to show a false negative (e.g. showing no disease when disease is really present). However, any positive results for disease would be reliable and true. These test results will help guide Ava's treatment course.

The plan and hope has been for Ava to reach remission in preparation for a second transplant. However, assuming Ava reaches remission, there are also concerns with pursuing a second bone marrow transplant (BMT). Even if the transplant is successful, it is certain to leave Ava with many serious, long-term health issues -- far more than the effects from a single transplant. Should Ava reach remission after this past round of chemo, the likely assumption/understanding would be that the chemo worked and brought her to this place. However, there would also be a thought/hope/wondering if Ava's body is finally kicking in to effectively fight the leukemia apart from the chemo (and maybe she wouldn't need any more chemo or transplant). There wouldn't really be a way to determine this, so depending on the test results, chemo or transplant seems to be the main two options. It's just that chemo is a double-edged sword as you know; while it has some fighting power against cancer, it also has toxicity on the "good guys" as well, so it's a mixed bag. A parent's heart is to use as little chemo as possible, and only what is required, but no one really has that kind of knowledge or certainty...

If Ava becomes ready for a second transplant, another question is: what kind of transplant should be done? Another cord blood transplant? Or perhaps a haploidentical (half-matched) BMT where Esther is the live donor? In the beginning of this journey, there was a lot of talk and search to find a perfectly matched donor for transplant. In the absence of such a donor, the option for cord blood transplant seemed the best route because the immature cells in cord blood could allow for a less than perfect match. But now that Ava has already had a cord blood transplant and also experienced GVHD with it, there is some discussion on whether a haploidentical BMT might be preferred this time around. With all BMTs, there's a delicate balance of wanting just enough foreign cell response to kill/attack the cancerous host cells, but not too much that it causes life-threatening GVHD. On the other hand, too little of the foreign cell response could result in the host cells attacking, resulting in a failed transplant.

If Ava reaches remission, there is a small window of time to make these decisions - no more than two weeks. As you can imagine, there are many steps involved with either kind of transplant, cord blood or haploidentical BMT, so a lot may need to happen in a short amount of time. But as we have seen with the progress on getting access to Venetoclax, nothing is too difficult for God.

Your prayers are coveted! Please pray:

• for Ava's continued pain: for total resolution of pain, no need of pain meds...or effective pain management that wouldn't cause her to sleep so much.
• for absence/resolution of any infection, whether on her skin or anywhere else
• for remission/true absence of disease
• for wisdom regarding whether to proceed with transplant and if so, which kind
• for wisdom regarding treatment plan if Ava is not in remission (e.g. doing Mylotarg again, if and when to use Venetoclax and how to dose it, etc.)
• for rest for the Lee family, rest for their weary souls and hearts; for the Lord's breath of life to sustain them, His embrace to uphold them, and His presence and peace to comfort them.

Ultimately, we continue to pray for unhindered trust and rest in our Heavenly Father who knows all and sees all. As He grants us insight into His plans, may we have the ability to recognize His hand and respond accordingly. We serve a mighty God, who is a faithful Shepherd and Guide. Thank you for walking with the Lee family.