Wednesday, July 13, 2016

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.


Anonymous said...

I continue to pray for Ava's well being and recovery. I also pray that God gives you and the physicians treating Ava the wisdom and answers you need to make the right choices for her. Please stay strong and never loose faith. The Lee family has truly been an inspiration to me and has brought me closer to God. I consider you an example of faith and hope that one day I may be able to so candidly express my feelings such as you have. Stay strong and believe!

Anonymous said...

Dear Pastor Michael, Esther,

I am so sorry that you are faced with this difficult situation, and that the battle has been so long.
I don't know when it was, but I remember it was months ago, when I prayed for Ava, 2 Timothy 4:7-8 came to my mind:
"I have fought the good fight, I have finished the race, I have kept the faith.Now there is in store for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day--and not only to me, but also to all who have longed for his appearing."
Maybe it was because I had witnessed a pastor who was beloved by many fighting brain cancer. Her husband wrote on CaringBridge for a year and a half, until she rested in God's arms. A community was brought together, and to me, she was ministering the world with her entire body.
That was why, from the very beginning, Ava and your sharing of your family's journey seemed to me God's way of ministering many people. Why does God have to do his work through small children, our heart can never understand, and often cannot accept. And I too have wept for Ava and constantly pray for His mercy. Your pain has often made me wonder what Mary must have gone through.
Yet, our soul knows that God's name is glorified through the life, death, and resurrection of Jesus, His beloved son. I hope, when you reflect on the difficulties of the past two and half years, your experience of God's glory also gives you peace and comfort.
I pray that when you have this difficult conversation with Ava, the Holy Spirit is with you and Ava, carrying you, guiding you. I know it is easier for those of us who are not personally connected to your family to say "have no fear." I pray that the Lord himself whispers into your ears and to Ava's especially, in whatever way that only He is capable of doing. And I am still praying that He heals Ava completely, in whatever way and time He has always planned.
With love,
Your sister in Christ.

Peter said...

Dear Ava, Esther, Michael, Gwen and Jude,
You are always in our thoughts and prayers, as we know our good Father sustains all of us, that He does not forsake all of us, that He loves all of us always and that we cling to His promises...
With love,
Peter, Lily, Ethan and Claire