Thursday, December 24, 2015

We Need Wisdom

Thank you so much for waiting and for praying through this difficult time with us. 

We have some news. It's not what we had prayed for but it is, still, God's graciousness to us. We heard back from Seattle this morning that Ava's leukemia burden is still at .01%. We were praying for a miraculous healing and that the leukemic cells would retreat and be destroyed by her immune system but that is not the case. However, the fact that her leukemia hasn't grown in the past 2 weeks is a huge praise. The risk of it growing out of control while we came home for Christmas was a very real danger we faced. The doctors feel it is just a matter of time before she has a full blown relapse in her marrow and then her blood. This type of relapse would most likely disqualify her from a second transplant and make any salvage therapy ineffective. So the question is...why are we waiting?

The answer is not cut and dry. We have reached out to doctors from coast to coast and have had many experts in the field offer their opinions. There have been doctors who have urged us to go, go, go before the disease gets out of control. There are doctors who say that blasting her with toxic chemo for this tiny amount of disease would strip her of such a good quality of life. So there is the option to wait until the disease is more pronounced before making a definitive move. Both of these plans are heavy with risk. The first choice to forge ahead with chemo and a second transplant gives us hope, however small, for a cure but she could die a hundred different ways in the process. There is also the argument between which chemo to use. The doctors in Chicago would use ALL therapy, and the doctors in Seattle would use AML therapy. Due to the rarity of her leukemia, there is no set protocol. At diagnosis, she bounced between ALL and AML therapy with neither getting her fully into remission. It reminds us that we have always been in a position where we cannot rely solely on science and doctors. The second option to wait is fraught with the worry that we might miss the chance to treat her effectively and would have to face that regret for a lifetime.

Now that we have all the results we were waiting for, we can begin the process of planning our next steps. We go back and forth daily between our choices weighing the risks vs. the benefits. It's so different from anything we've had to make a decision about before and we pray that no one would ever have to choose between the choices we have in front of us. 

The reality is a decision has to be made soon. And by not choosing, we are still choosing. We long so much to confidently say we will wait it out and see the miracle God has in store for us where he wipes her marrow clean off this tragic disease. But, there is so much grace in how God has set a way for us to receive a second transplant. As one doctor put it, "you are in the best situation, for being in such a bad situation." And she's right. Typically when a child relapses, it is a raging, forceful relapse that announces itself in many ways especially with a marrow chock full of cancer. 

But Ava's has come on ever so slowly, giving us so much time to pray, to process, to love, to live. She is also one year post transplant which means her body is now healthy and thriving. Sadly, this is the best time to hit her again with treatment because her body would be able to withstand the toxicity so much better than children in a weakened state from just coming out of transplant. Not many children have the option of another transplant, so we are thankful that Ava meets the strict requirements to be given a second chance.

There is that small chance that her immune system can beat this and that is why we continue to stay on our knees until the bitter end. The doctors agree that this scenario is unlikely but we have walked with the Lord long enough to know that nothing is impossible when He wills it. To be honest, this is where I find that I have to wrestle hard with my faith. It is in the waking and the sleeping state that we struggle with God for a blessing, trying to get our hearts in line with what He will do despite what we want Him to do. It's a tremendous undertaking. God help us. Jesus pray for us.

Thank you for your prayers. The days are actually filled with the very real peace of God which allow us to enjoy the day with each other. We still laugh (a lot), discipline, learn, play, argue, work, etc. because of this supernatural peace. There are moments when our knees feel weak and we wonder how we will be able to face the days ahead but thankfully these are fleeting thoughts. If you would like to pray for us, please pray specifically that God would make it clear which path we should choose and that we would embark without looking back and without regret.

Thank you Jude...

Juby and Mama

Showing off the cross necklace that Great Aunt Sharon sent!

You would never know from this picture, but the girls fought long and hard over who would get which Palen Princess hairpin. Thank you Hannah!
We were presented with gifts from Cal's Angels "12 Days of Christmas" program...a program that helps take the burden off the planning and preparation of Christmas. There are no words. Thank you Stacey!

"Believe in Miracles" - an ornament sent to our family by Gwen's loving teacher

Jude redeeming the picture above

International Play Things (the makers of Calico Critters) sent a huge box of toys to Ava...seriously we have been blown away by the love and generosity we have been shown.

Ava working hard at school. This was my first time volunteering in her classroom and it moved me to pray harder that we might have many more of these moments.

Coatless in Chicago in December? See, miracles do happen!

Playing on the huge caterpillar that Jan and Janee brought over! It is the best babysitter ever!

1 comment:

Anonymous said...

Your wisdom will come through prayer!