Tag Archives: Fusarium

A Time to Rest – Bryan’s medical update

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The doctor appointment on Tuesday went quite sideways to expectation. It’s a bit like a “perfect storm” where we came to the top of the wave thinking we might just make it over the crest, only to have our hopes dashed by yet another crushing wave. Such has been this long journey through cancer.

The bottom line is, because fusarium never actually goes away completely, it rules out the possibility of a second transplant, my only small medical hope for a potential cure. In light of my recent test results the prospects of using hypomethylating agents (“soft chemo”) to hold the leukemia at bay makes the doctor “terrified” for the potential “disastrous” effects it could have on my health. In my complex situation, with two terminal illnesses, there is only a slim chance the treatment would give us a little more time and a very large probability that they could actually shorten life because it would present an environment that is more susceptible to infections, including the existing fusarium which continues to persist after nearly 7 months. Each treatment yields ever diminishing prospects and ever-increasing risks. In light of this, the doctor suggests that we might consider enjoying the time that remains, without treatment. Having discussed this and prayed overnight and into today, we are at peace with this.

imageWe’re not giving up. We’re leaving it up to God.

We have persistently and repeatedly pushed against doors that would not budge. We’ve both endured the devastating effects that 3 1/2 years of “treatment” have wreaked on my body. Together we both have fought the good fight and run the hard race. Now, it seems to us, a time to rest and let God do what is best in the grand scheme of things. It’s been in his hands from the beginning and we’ve endeavored to honor him each step of the way, asking only for his perfect will to be done.

We have no real definitive timeline. It could be “weeks or months”. Or, God could still work a miracle. Thanks to those of you who have been praying and fasting to this effect.

Our intent is, as it has been all along, to celebrate the life God has given us, thankful for so very many blessings, and to live with the great purpose to which he has called us. Death is not defeat. For us, death is a graduation from this phase of life to the one in heaven that lasts forever in peace.

We intend to continue to live life fully with purpose and passion. We encourage you to do the same. Trust God. Ask for his very Spirit to teach, guide, comfort, and strengthen you, to follow Jesus daily. After all is accomplished and all is experienced, all that remains and all that counts, is faith, expressing itself through love. (Galatians 5:6)

Know how very much we appreciate your ongoing prayers and support. They are a treasure to us.
Love,
Bryan and Marcia

 

Bryan medical update 5/11/16

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Consultation went well at the U of I Wednesday. I had a blood infusion which should give me a bit more energy for awhile. The doctor agreed the best option is to proceed with hypomethylating agents (“soft” chemo) which I should be able to do outpatient at Skiff in Newton, maybe starting as early as next week. From what we understand, it will be a series of 5-7 infusions (or injections, depending on drug that is approved) over the course of a week. Wait 4-6 weeks and then reassess. Repeat if progress indicates. We’re told side effects may be minimal and that a return to Mayo Clinic is not expected. My Mercy oncologist will supervise the treatment and the U of I cancer center will continue to be my care coordinator.

This likely will not kill the cancer but hopefully will keep it at bay and give us additional time for the fusarium infection to be completely (?) knocked down. IF repeated courses of the hypomethylating agents are successful, it *might* open the door to a future induction chemo and transplant, IF my body is able to tolerate additional heavy chemo. We are cautioned that the risks continue to be high. But we are comfortable with this treatment approach and trust God will continue to direct our paths in the coming weeks/months.

Thank you for your prayers and support! We’ll keep you posted of any changes in plans. We are reminded daily how fragile this life is. As with any goal, it’s best we begin with the end in mind, pursue God, and enjoy the blessing of his promises and grace. This is what has sustained us through this unexpected journey. We hope he is the one who also sustains you through your every trial.

Blessings
Bryan