Saturday, September 20, 2014

Transferring to Seattle

Thank you for your prayers and messages regarding Ava's biopsy on Wednesday. We do not have the results for the biopsy, and I don't know how likely it is that we'll hear this weekend.

However, things are moving despite waiting for biopsy results. Mike & Esther have decided to transfer Ava's care to the Seattle Cancer Care Alliance.

After meeting with doctors in Seattle and Cincinnati, the message they heard was the same: time is of the essence, and Ava is in imminent need of a transplant. The fact that she did not reach remission in the first month, two months, three months of treatment is a big deal – this shows that her cancer is either resistant or aggressive (or a combination of the two). This means there is a much higher chance of relapse. Although the cancer seems somewhat suppressed by the chemo for the time being, the fact that the residual disease remains (and really hasn't changed much in the last few months) means that the cancer could come back at some point. If it does, it will likely be much more fierce and aggressive, and even more difficult to treat.

As you know, the goal is to get Ava into remission (MRD negative). Once in remission, there would normally be two possible paths of treatment: 1) continue with chemo and hope that chemo itself will be adequate to keep Ava in remission, or 2) get a bone marrow transplant. Given Ava’s unique case of having biphenotypic leukemia, plus her severe allergies/responses to various chemo agents thus far and lack of remission, the transplant docs all agree that going the route of chemo alone is not an option for Ava; she needs a transplant. It is preferable for Ava to be MRD negative before transplant, since any residual disease could render the transplant ineffective. However, the consensus is that the best option is to do transplant, with or without remission first.

Meeting with both Seattle and Cincinnati helped Mike & Esther realize the urgent need for transplant, something they didn’t realize was so critical and time-sensitive. It’s been a bit of a shock to be thrust into the imminence of it all when they thought chemo alone was a viable route. Yet God has guided their steps and helped them to make decisions quickly, but not rashly. They desire God’s plans above any of their own desires, and recognize His sovereignty even over these past 6 months of chemo. He is the source of any and all healing, so our trust lies in the Creator of all things more than any renowned physician or earthly timeline. Still, they are grateful to have the experience and knowledge of these different doctors whose input helped them come to a decision about Ava’s care. Although Minnesota was originally a place of consideration, the doctor there isn’t available for consult for another 2 weeks… too long to wait before figuring out Ava’s care. Seattle has the longest history of transplants and probably the most experience with cord blood transplants (which is what they would do for Ava, especially in the absence of a perfect match). Mike & Esther also have some support network in Seattle that will no doubt be a great blessing and help to them while they are there. Thus, they have decided on Seattle.

There is a lot to be done in the next few weeks. The first and most important is getting their insurance switched so that they could be in a network that includes Seattle. Please pray for success and covering of all such details.

There are numerous other logistics that come with this decision; picking up and moving for an unspecified amount of time is not an easy thing. Seattle docs say that Ava would need to stay for a minimum of 3 months for transplant, but any complications, infections or other setbacks could easily extend their stay to be much longer. This means they’ll also spend Thanksgiving and Christmas away from home, and Esther will probably deliver the baby in Seattle as well (she is due at the end of January). That’s not to mention the pre-transplant preparation that needs to take place for Ava: four days of total body irradiation (twice a day) in an effort to wipe out any/all residual disease. This will no doubt be extremely hard on Ava’s body, in addition to rendering her infertile. There are a whole host of other concerns and what-if’s, but as we are told in Matthew, “Therefore, do not worry about tomorrow, for each day has enough trouble of its own.” They are seeking and trusting God for each step, trying to plan ahead yet take things one at a time so as not to be overwhelmed. It is impossible for our finite minds to address and plan for so many unknowns; we trust in the wisdom of our Heavenly Father. Please pray for God's peace, grace, provision and evident presence in the coming weeks and months! Your support and prayers are invaluable.

In the meantime, Ava may get chemo next week, but the biopsy results will determine if the chemo regimen will stay the same or change. We will let you know when we hear.


Anonymous said...

I love you Ava, Praying for you from college. Pastor Mike and Esther I am also praying for you to continue to have the strength as you go through these trials.

Anonymous said...

Jesus responds by saying, “Did I not tell you that if you believe, you will see the glory of God?”

i pray that through these grueling times, you will see the blessings that God is pouring on you and Ava. although it is so hard to find the good within the bad, i hope you will find peace and assurance in knowing that God has the Perfect Plan for little Ava.

Heather Rocen said...

If you need anything from Seattle, I have amazing friends and family in the Seattle area.