March 2: Brouwer started his first cycle of TPCV.
March 16 (two weeks later): Platelets were 225K, a safe and acceptable level.
March 30 (two weeks later): Platelets were 35K, which is too low to receive chemotherapy (platelets need to be at least 100K). Brouwer shows some bruising and takes naps totaling 3 1/2 hours a day.
April 6 (one week later): Platelets were 67K. To stay on-track with his chemotherapy, Brouwer’s platelets need to be 100K in one week (April 13). Brouwer’s Auntie Joy tracks down some homeopathic remedies for low platelet counts. As a result, we up Brouwer’s water intake and add (or are intentional about him eating) beet juice, citrus, wheatgrass, spinach, sesame seed oil and papaya. Why not, right?
April 13 (one week later): Platelets were 170K(!) Brouwer was able to stay on-track and start his second cycle of TPCV.
Ok, let’s pick up in more detail there . . .Wednesday, April 13, which is the day Brouwer started his second cycle of TPCV . . .
As a reminder, each cycle is six weeks and there are eight cycles in the TPCV regime. In each cycle, Brouwer receives pills every six hours for three days. Brouwer did so well with pills in the first cycle that, for the second cycle, we requested that all of his oral chemo be in pill form. Brouwer, a three year-old, took all of his second-cycle pills without any issues. Even at the midnight doses, eyes still closed from being woken from his sleep, Brouwer would swallow his water and pills without complaint and open his mouth (seemingly with pride) to show that he swallowed everything.
No nausea or other issues with his pills in the second cycle.
Today, Wednesday, April 27, platelets were 185K. As the big drop in platelet counts was during weeks 3 and 4 in the first cycle, we’re interested to see how Brouwer does the next two weeks (more tired? bruising?) and how his counts are on May 11.
Today was a particularly busy day at the hospital:
1-Brouwer got his picture taken with Dr. Lulla, Irene and Ellie. We’re told that this picture may be featured on Lurie Children’s Facebook homepage during the month of May for Brain Tumor Awareness month.
2-We all got to meet Anthony Rizzo, first baseman for the Cubs. Anthony is a childhood cancer survivor (Hodgkin’s lymphoma) and, as is my understanding, was treated at Children’s Memorial (which was Lurie Children’s previous name). Brouwer wanted to (and did) show Anthony his arm by throwing the stuffed cubby bear Anthony gave him.
3-We overhead the clapping and cheers for a child who had received her final chemo treatment. Lurie Children’s has a bell for kids to ring when their disease is stable and they are taken off chemotherapy. Chills.
4-We met folks from the Bradley University chapter of “Love Your Melon”. They gave us some Love Your Melon hats (which can be really hard to get!) and superhero masks and capes for Brouwer and Banner.
The team noticed today that, when Brouwer looks right, his eyes twitch. We think (but can’t be sure) that this is a new development. It’s our understanding that some of the nerves that control eye movement run through (or near) the midbrain and as such, midbrain tumors are associated with eye twitching problems. We don’t know, but of course fear, that new developments such as this indicate that Brouwer’s tumor is growing.
Three years ago today was a Sunday. It was a bright spring day in Charlotte. Ginger and I made our way to the Carolina’s Medical Center with the intention to drop off a small gift to some friends who had spent months upon weary months in the hospital with their young son who had what, more and more, seemed like a terminal heart condition whose only hope was a heart transplant. No donor could be located. It had been a winding and exhausting road.
The few days leading up to that visit were particularly dark. Given the apparent reality at hand and the failure to locate a heart donor, on that preceding Friday, the couple had said their official goodbye to their son.
It was our intention to drop off our gift unannounced. However, unplanned, our paths crossed. We saw them, but not as we expected, instead:
A donor had been identified the night before and, as I recall it, when we saw them, their son was just out of surgery.
I can’t articulate the spirit of their emotion that day, or even my interpretation of it, but today we remember and rejoice with them: three years ago today their son received a life-saving heart transplant that seemed to be an impossible probability.
What a thing.
On Friday all seemed lost and three short days later, against all odds, on Sunday Grace dispelled doubt, caused fear to flee and restored hope.
Happy Anniversary Jacksons!!!!!
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