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Out of the Mouth of Babes


Monday's visit to clinic was a successful one. Jaymun is doing so well that our doctor changed his three weekly clinic visits to two! We're still working on getting him back up to his necessary caloric intake of formula, but I feel confident he'll get there in his own time. The days are a blur of oral meds, diaper changes, IV meds, flushing lines, applying creams and ointments,  temperature readings, preparing formula, etc. This is all in between taking care of four other children who each have their various activities and needs as well.
We seem to have gotten into a sort of routine that works for us, especially when we need to get everyone off to school and then still make the hour drive down to the hospital for Jaymun's 9 AM clinic visits!

We received some happy news at clinic that Jaymun's VNTR test (which is a type of DNA blood test) came back with results of Jaymun's blood being 100% composed of Devon's cells! At this stage of treatment, this news is about the best we could ask for. Unfortunately, this doesn't completely guarantee that Jaymun will never have a relapse later on. Since his actual bone marrow wasn't infected initially and the cancer seemed to have resided mainly in his skin, the doctors have to be especially vigilant about watching future blood counts for any significant shift in numbers. This fear of relapse is partly why parents are so devasted when they hear their child has been diagnosed with leukemia. Jaymun's type (AML) has a history of putting kids in a "high risk" category. Add the sad fact that Jaymun was an infant born with AML and you can see why we live with the worry that his cancer may return someday.

However, we're not planning to linger long on what may happen. It seems imperative right now to just focus on celebrating the wonderful things that are happening. Jaymun is doing well. He's home. We're together as a family again. Life is good.

There are things that I wanted to journal about over the past months that never seemed to get written.
(With Jaymun's cancer, there was certainly no lack of new material!) Back when Jaymun was so critically ill in the PICU, our other children were obviously worried sick about him. Several times when they visited we heard the question, "Is he going to die?" asked in fearful, quavering voices. It was heartwrenching to have to tell them,
"We don't know. All we can do is pray for a miracle." One evening, the troop came to visit and Devon taped a letter up to Jaymun's window. The next morning on rounds, we noticed the residents and doctors chuckling as they read this note.

 Every night when I called home, Devon would eagerly ask me,
"Mom, did you read the prayer I wrote? Make sure you read it for Jaymun before you go to sleep."

Partly due to Devon's innocent sincerity and partly due to the fact that I truly believe God holds a special fondness in his heart for the simple faith of little children, I did in fact read his prayer--out loud--every night in the ICU.
And now, when I look at that piece of paper, with those sweetly scrawled words of earnest pleading,
I have to smile for the sheer happiness of Devon's prayer coming to fruition....

After months and months of agonizing over possible outcomes, Jaymun's new blood does indeed seem to have "settled into his body".

P.S. To tie into the theme of this post, I've included this link of children's prayers  that my mom sent me some time ago. (Prepare to laugh outright, some of them are pretty humorous!)