7/26/18 WE DID IT – Remission

Today we received THE news. The kind of news that changes everything. Reese’s JMML mutation tests came back. We have been waiting 23 days since her last bone marrow for the results to be run and then interpreted. For this momentous day we have awaited the careful, painstaking analysis of the researchers.

Let me step back and share the whole story. We know that JMML can not be cured by chemotherapy, the only cure is a bone marrow transplant. It is because of the aggressive nature of Reese’s particular mutations and the need for the very best, most cutting edge JMML research, that we found our way to UCSF. At the end of May, after transplant, Reese had a bone marrow aspiration. She had 100% chimerism (all donor cells.) But her marrow was then also tested for the dreaded, aggressive JMML mutations, and in June we found out that one of them was still there. In very small amounts, minuscule, but still there.

Well, three days after this bone marrow aspiration in May, GVHD hit and hit hard. Reese has been battling GRADE IV GVHD for eight weeks. And it is a battle. I have explained before that GVHD is caused by donor t-cells attacking Reese’s own cells because they don’t recognize them as their own. The theory is that if they are so powerfully attacking her gut they must also be seeking out and destroying any rouge JMML cells left in her body. So we prayed and trusted and tried to keep the faith since June. We watched our baby battle GVHD and the pain that ensued.

On July 3, Reese had her second bone marrow aspiration since transplant. We knew that we had to wait three weeks to find out if the GVHD had the silver lining of life. Today, my doctors delivered the news and I can’t even put into words the feelings, the peace, the joy, the acknowledgement, my first thought was- my little girl gets to GROW UP! She gets to turn five, to see another snowfall, to walk in the sand and splash with her sisters. REESE IS MUTATION FREE! Her JMML is gone, we did it!! She did it. SHE DID IT. She really did it.

This past week, while waiting for these results, I have been discussing this with my friends and family. I have watched my little girl suffer and then suffer some more. GVHD is brutal and there are just too many bad days to count. I asked God, why? Why is her GVHD so bad? I tried to reason, she had a great donor, a 12/12!! She is a good girl! She has faith, she is loving. WHY. A few days ago I found peace. I realized God has a plan. God saw her mutations and God knew how to rid them. I realized that I can’t question His plan, because as confusing and difficult as it is for little me to try to understand, I don’t need to. I just need to trust and have faith. Today the doctor told me that the GVHD that came three days after that May bone marrow aspiration did this. She told me she believes this. The hurricane that is GVHD took out those last cells and brought us the greatest rainbow, life.

My doctors and nurses are the most brilliant, the most thoughtful, I am the most blessed that God led me to them.

Is Reese’s battle over? No, she has won the war, but she is still in the thick of GVHD. She had brief relief on Monday and the last few days she has barely been able to lift her head off her pillow, and today when I told her the glorious news she looked at me with all of that excruciating pain behind her eyes, trying to make sense of what I was saying, I’m better? I look forward to the day when she can smile at this news and grasp the idea without the fog of pain and suffering. For Reese, she is still very much amidst a battle.

So now what happens? Reese needs to beat GVHD and get healthy again. She needs to recover from beating JMML. This road is slow, painfully slow, and long. But we have slayed the dragon. The rest is details and we will take them on as they come, together.


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