It’s here. Day +100. One hundred days since Reese received the gift of life from an 18-year-old girl, an unrelated donor, who was a 12/12 match to my little four-year-old. One hundred days since that rainbow, God’s sign of hope, appeared across Reese as those last stem cells made their way into her body. Her cure. I have so much to be thankful for as I watch my little girl grow stronger on Day +100.
Where are we on Day +100? Reese is recovering from the aftermath of severe gvhd. We pray that she has seen her last big flare and the process of recovery can continue. Reese has had two successful steroid weans. She has remained infection free (BIG BLESSING) throughout all of this immunosuppression, what a gift, I pray this continues. Reese continues to pray for cheese and peas (and a variety of other foods.) This little peanut will never take eating for granted. When I casually grab a yummy piece of food, it crosses my mind that this is a blessing I always took for granted. Not anymore.
Where will we be the next 100 days? The next 100 days will be spent in the same place as the first 100 days, at UCSF Benioff Children’s Hospital. With God’s help, they will be spent with healing and progress, good days instead of pain.
And the 100 days after that, and after that…? I found out recently that Reese will not be able to attend school this year. When this journey started I did not think that this would be the case, but her continued immunosuppression to fight the gvhd has made her immune system slow to come in and weak. I am still getting used to this idea. It used to take my breath away, when I pictured Reese in the backseat, saying goodbye to Quinn at drop off. It seemed so hard. But I think that when that day does come, I will just be grateful. Grateful to have my whole family living together, under one roof.
What else am I thinking about today? My doctors. My team. The fact that there are brilliant, talented individuals in this world that care about curing JMML as much as I do. Reese is in the right place. Yesterday I learned about a study that will be published shortly. The decisions that were made from the moment we became patients at UCSF have saved my daughter’s life. I will tell you more about this in the future, but if I ever had any doubt (I really didn’t) about my decision to come here, there is none. These cutting edge, forward thinking doctors saved my daughter’s life.
If you are familiar with Reese and Quinn, you know that they are little acrobats. Back in May, I took a series of pictures of Reese “stretching”, doing some yoga moves, in her bed. I made an album of these exercising pictures on my phone and Reese uses it to exercise each morning. This is a big deal, manipulating her body and having the strength and core power to stretch. Reese powers through, looking at each picture and doing her best to recreate the moves that came so easy to her just a few months ago. This drive will have her walking sooner and help her body heal faster. A body in motion stays in motion!! (do you like that, dad?)
Last night, while we were moving through our bedtime routine, I asked Reese if she was ready to start reading books.
Her reply, “Yes. I always ready. I was born ready.”
That’s my girl.