Friday, April 22, 2016

Superstar Ava

We were told today that only a handful (like 4 children) are documented receiving TSET, total skin electron therapy. It's because it is really hard to do so most centers won't preform it on children.

All the equipment you see has been special ordered or specially made for Ava. This team has worked together for weeks trying to make this therapy available to her.

During the dry run, she had to put on lead goggles to protect her eyes. Not only was it disorienting and dark, it was also really scary for her. She started to whimper so we told her she was a super star.

"If I'm a super star, why can't I see? If I am a super star, why am I scared?" she said through her tears.

Walking out of the room, after all was said and done, Dr. John bought us coffee and donuts. His eyes were filled to the brim with compassion as he probably contemplated the lengths we were going to save our super star girl.

We know the chances are slim. We know that we may have to face unbearable pain in the future. But for now, we are so very thankful, so very humbled at the resources we have been given to try one more time.

You are a super star, Ava, and we are so very proud of you.
#superstarscancrytoo #soverythankful

Mike's letter to our church family:

Dear Brothers and Sisters,
Good afternoon, and I hope you had a blessed week in Christ!

We took Ava to the Radiation Consultation yesterday, and believe that the original plan to move forward with total skin electron therapy followed by second bone marrow transplant is the best course of action to take.

We now know much more about what the radiation procedure entails. The practice sessions went well, and the team is confident Ava will safely cooperate over the course of this three week treatment. Her radiology team should be ready to begin toward the end of next week.

Thank you so much for your prayers. We had been very uncertain of this plan, but now have peace to move forward with it. It simply seems that God is faithfully leading us to take even greater steps of faith. For example, the renown Radiation Oncologist is right here in Chicago, who said that this procedure has been done for only four other children in the past. Ava is actually the only child who is doing it as a precursor to a curative treatment plan rather than for end of life (palliative) support. Even the side effects are unknown. Yet the treatment plan has been approved and Ava is at peace.

The original idea of returning to Seattle for transplant in Mid-May seems accurate. Until we begin the radiation, Ava will enjoy the outdoors and the special feeling of being home, which was a very pleasant surprise for us all. She went back to school today, and I heard it's going well!

I will continue to keep you updated, and please let me know if you have any questions at all about this or anything at all related to family and ministry.

With love and thanks for you,


Anonymous said...

You sure look like a Super Star with those awesome glasses on!
Keep it up Ava, you are a brave girl.

Anonymous said...

We'll keep praying and supporting Ava and your family. Have peace!