Our superhero!

Our superhero!
Our superhero!

Tuesday, May 20, 2014

Our last hope for a cure

It has been way too long since I have updated, and way too much has happened, so I will just give a brief overview of our last few months.

Ethan was doing well until the last few weeks of March. We went in for our normal clinic visit, and Ethan had had a cough. They did a viral panel, and figured out that he had RSV. He was admitted to the hospital that night. A few day later, Merrill called me from the hospital and asked if I could talk. He informed me that Ethan's cancer was back. He had relapsed again.

A few days later, the doctors sat us down and we were asked if we wanted to continue the fight, or just make Ethan comfortable until he passed. We of course said we would like to continue, as long as there was a viable option. After some scares of some of our options of not qualifiing for some clinical trials, we were able to get on the same study he did before transplant on a compassionate basis. It looked promising at first. He started to feel better, and the leukemia in his blood disappeared. However, after his month of being on it, he was still at 46% leukemia in his bone marrow. Our final option was to do a clinical trial in Seattle.

This trial is fairly new. It was first done in pediatrics 2 years ago. Ethan is in a phase 1 part of the trial where they are testing it in kids after a bone marrow transplant. For this study, they pull out the t cells, and infect them with a disabled HIV virus. They then multiply the altered t cells in a lab. After 3-6 weeks, they will put the altered t cells back in, and they will then target the b cells, which is where Ethan' s cancer is. It is all very fascinating. Ethan has qualified for the study, and is in Seattle now. He will have his t cells harvested on Thursday.

We have been told by our doctors that this is a long shot. They used the term "hail Mary" to describe it.  We are hopeful that this will work for him. We are so grateful for the chance to try this to at least give us an option and one more shot.

We don't know what the future holds. We don't know how all of this will turn out, but we do have faith in our Heavenly Father. We know that he is mindful of us, and our situation, and that whatever happens, He will help us through it. We have seen His hand in things throughout this whole process. We have seen His tender mercies in every nook and crevice. We are grateful for those who are helping us and being His hands.

I mentioned a few weeks ago in our church class, that while we have not seen our big miracle yet of Ethan being cured, we have seen many, many miracles along the way. More than we can count, and probably more than we have even seen or realized. I am so grateful for those miracles. I am so grateful for a LOVING Heavenly Father. I am grateful for the things we have learned and the compassion we have gained throughout this process. It has been an amazing journey.


  1. I am José Oliveira . I'm Brazilian , and I would like to say how much I admire the actions made throughout acity , friends , relatives and parents . Congratulations for having given so much joy to Ethan . He is an angel who will always know that this planet had people who loved him very much . A big hug to the parents of Ethan . You are parabens !!!