We have disappointing results from John’s latest MRD test. He is MRD POSITIVE – 0.012% Leukemia (down from 0.07%). It’s a step in the right direction but not enough to propel him to transplant. We will regroup – pick ourselves up, and continue to fight. The plan is to meet with Dr. Pui tomorrow, Friday, and discuss what the next cycle of high dose chemotherapy will entail and map out a general timeline of when that may begin.
John marrow has recovered, somewhat, from his last course of treatment. Its producing lots of platelets (which it hasn’t done in a very long time). His spleen had been sequestering them for over a year so, it’s a bit perplexing why it’s releasing platelets now. Regardless of the reason it’s a great.
He’s has a VERY angry gallbladder. He’s had gallstones for a while but he is experiencing acute gallbladder attacks so his gallbladder needs to be removed a.s.a.p. Surgery was scheduled for tomorrow, Friday, but John counts took a dip and we need to wait for them rebound (immune system needs to be stronger). It will be performed via laparoscopic surgery at St. Jude.
John is also experiencing symptoms related to toxicity. He has critical levels of Voriconazole (an antifungal used a prophylaxis while John’s count were low). He also had a reaction to a Scopolamine Patch he was wearing to control his nausea. This past week John started to experience moments of confusion. I related it to “chemo brain” – but by Tuesday, late afternoon, he began to ramble and have hallucinations. It was scary! After chatting with Dr. Pui & Martha we pulled him off these medications, ran some labs and had a complete Neurological exam (ONLY at The Jude would things like this be attended to so quickly – the response time to our concerns was immediate!) John has always been sensitive to medications and these in particular didn’t metabolize in his system, as they should have. Happy to report the delusions have ceased since dropping the above-mentioned medications. John is also having uncontrollable bouts of nausea. Staying ahead of it isn’t easy. We spent most of today in the A Clinic (Leukemia Clinic) getting IV anti-nausea meds to help control his vomiting. They side effects of chemotherapy and the medications to ease the side effects of treatment are so hard on John’s body.
John lost all of his hair last week. It started to “shed” the prior week. His pillow and sheets were covered with little black hairs. He knew his hair was barely attached to his scalp. So, he took his favorite CPS cap and headed to the shower with a full head of hair and came out an hour later bald. As the water from the shower hit it, it instantly fell into the tub. Just the pressure from the water rinsed the hair right from his head. I could hear him flushing handfuls of hair down the toilet – it just kept flushing and flushing. It was so hard for Rich & me to listen to, but we waited patiently, giving him encouragement through the door and greeting him with open arms when he finally emerged. Tears streamed down his beautiful face, he was heartbroken.
John is anxious regarding the ongoing therapy to rid him of his residual disease burden but continues to fight with great determination. That doesn’t mean he doesn’t have his moments; he cries and expresses great sadness from time to time. He is very homesick, missing his puppy, Tula, our home and his school. This journey is both physically and mentally exhausting. John is taking one moment at a time – as are Rich, Bella and I.
“A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles”. ~ Christopher Reeve
Thank you for your continued prayers.
Wish Lists: Thank you! Thank you!
Hagen Family: Gift-cards to Whole Foods, Fresh Market or Starbucks!
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