We had a great series of appointments at Children’s Hospital today. Adrian is making progress, and we continue to get good news that his bone marrow is showing signs of recovery through improved blood counts. His most recent counts are:
• HCT (red blood cells): 32.3% (previously 29%, now within the normal range of 31-48%)
• Platelets: 521K (previously 93K, now slightly above the normal range of 150-500K)
• White blood cells: 9.1K (previously 3.4K, now within the normal range of 5-12K)
• ANC (neutrophils): 2639 (previously 884, now above the target of at least 1000)
AJ begins Phase II of chemotherapy next week, which will include a new mix of drugs. Thankfully, we’ll also begin tapering him off the dexamethasone next week. This steroid is what’s causing most of the side effects we’re currently seeing. His appetite has increased so much that he weighs nearly 39 lbs. He has gained 10 lbs in 13 days! While in the hospital, he had lost a lot of weight (9 lbs) and we were worried he wouldn’t gain it back – not an issue now thanks to the steroids. His face and belly are pretty swollen, and the chubby face makes him look like he did when he was a baby.
AJ at home before steroid effects kick in
Since his blood counts came up considerably, today we were given the green light to have AJ out in public. So we took him out to lunch at Café Vios to celebrate. Café Vios is in our old stomping grounds on Capitol Hill, and is one of AJ’s favorite restaurants. This was the first time we’ve taken him out (aside from the hospital) since his diagnosis. Normally AJ might eat about 1/2 of the child meze plate at Vios. Today, he wolfed down the entire meal before moving on to some of Mom & Dad’s food, then announced he wanted to go home and eat more. Apparently this was just an appetizer for him. The funny thing is that normally AJ would hold out for gelato for dessert, but these days he has no interest in sweets. He prefers salty foods.
AJ’s hair is just beginning to fall out. Not a lot, but he is definitely beginning to shed. We know this is part of the process and we expect it. We’ve explained it to him and he doesn’t seem to think it’s a big deal. After all, it will grow back. Plus he will look great sporting baseball caps.
Along with starting a new phase of chemotherapy, next week includes a spinal tap and another bone marrow aspiration. The spinal tap is to administer a less frequent dose of chemo directly into the column to ensure the fluid there remains free of leukemic cells.
The bone marrow aspiration is taken from the hip. The sample will be sent to the University of Washington for an MRD (minimal residual disease) test. The MRD test is the final step in our current induction phase. It’s a more granular analysis of the marrow to completely confirm there is no sign of leukemia left. If the test comes out ok, AJ will officially be considered to be in remission, and the remaining five months of the primary course of treatment are to ensure the leukemia doesn’t return. Keep your fingers crossed for us!
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