Monday, October 27, 2014

Another setback

First of all, thank you to all of our friends from near and far for helping and supporting us in powerful ways such as prayers and tangible service.

We have been meaning to update but it has truly been non-stop since we've arrived. The appointments that we have for each day are overwhelming and pretty draining. Ava is being poked and prodded to make sure she is fit for a BMT and we are being inundated with information regarding her procedure and all the risks and benefits that follow.

Friday was a tough day for us. We were already pretty exhausted from Thursday's appointments and so the 6:00 am alarm clock was not a welcome sound. On this particular day, Ava had her pulmonary function tests to see what her baseline was for breathing function. She endured some hefty breathing exercises that left her winded. Also, due to having 13 vials of blood taken on Thursday, Ava's body was taxed. After that, we went to see Dr. Woolfery, the director of unrelated BMTs at Seattle Children's, for a consult. At this meeting, we talked about risks of treatment and prognosis among other things and had to sign our consent for the BMT to occur. 

We heard some hard to swallow facts about the BMT process but the most difficult thing was to hear that Ava's prognosis for successful transplant would fall considerably if she was not MRD negative at the time of transplant. We also listened to the awful side effects that could occur with the medicines she was receiving. Dr. Woolfery told us that the transplant itself would be uneventful, although Ava could react to the new blood so we would follow her normal allergy protocol. The months after transplant are the most crucial with Month One being the most important of them all. Three to four weeks after transplant is when the new marrow begins to engraft and form white blood cells, neutrophils, platelets, etc. Before then, Ava will be without an immune system. This makes ANY virus or bacteria incredibly dangerous for her system. We ask specifically for prayers during the first month for a smooth engraftment and that Ava would not relapse especially in the first 3 months.

After a few more appointments, we began our way back to Kent. We picked Gwen up from our incredible friend, Sam, who helped watch Gwen the past two days. At Sam's house, Ava began to spike a fever of 102 so we had to turn around and head back to the hospital. She was admitted over the weekend and was just discharged today. Earlier in the morning, we began to see cold sores sprouting on her face so we treated her with her Denavir cream. However, because of her weakened state, the sores continued to spread and began to appear in her eyes. Herpes near the eyes is very dangerous so we packed Ava's bags again to bring her back to the ER. As she stood by the door getting ready to leave, Gwen began to cry. Ava said, "Gwen, please don't cry. If I see a toy there, I promise to bring it back for you."  

That's my kid. She's not perfect but my heart could burst with all the pride and love I have for her. She's stronger than anyone I know. No joke. I am 28 years older than her but I want to have a FIT from all that's happened in the last few days. I want to sit here and cry into a bowl of ice-cream. But, not my girl. She stands at the door and consoles us even though she is bone tired and would much rather be crawling into a comfortable bed than go back to the ER to get poked and prodded again. God doesn't make mistakes and I know we are on the path he wants us to be on but, dang, sometimes I want to run straight off this path on to one that is more brightly lit. What keeps me here is that she's still going, one foot after another, eyes straight ahead, heart full of faith, and eyes that continue to trust even when days often end like today. 

Tonight, I thank God for all of you, for the chance to be at a great children's hospital, for the slumbering 3 year old by my side, for prayers that are being lifted up from all parts of the world, and for my 6 year old hero that keeps fighting hard. I also thank God, that with him, there are no percentages and numbers that are discouraging. He's gone before us and he's here with us now. 

And as many cancer fighting families will say, "All other percentages don't matter. It'll either be 100% or 0%." So we continue to believe that we'll be part of the 100% as well. Thanks for believing with us!


5 comments:

Anonymous said...

Praying so much for you and your family

Anonymous said...

Ava has taught all of us so much about how to live our lives as He would want us to!

Amber Peters said...

Standing tall for all of you! Keep on keeping on!

Anonymous said...

"And the LORD went before them by day in a pillar of cloud to lead them along the way, and by night in a pillar of fire to give them light,.. . The pillar of cloud by day and the pillar of fire by night did not depart from before the people. " Exo 13:21-22

So glad to hear from you and all of you have taught us much. Standing with you.
Siew-Kim.

azileretsis said...

Praying for you guys.

Trust in him at all times, you people; pour out your hearts to him, for God is our refuge. - Psalms 62:8