Sep 10, 2019 Latest post:
Sep 27, 2020
Grant is our happy almost 3-year-old. He lives with me and his dad in Northern Virginia near DC. He loves going to storytime, playing at free forest school, going in with me to the city to see the cherry blossoms, the museum, and everything that DC has to offer.
Grant went in to his pediatrician on Thursday, 8/29/19, because he was feeling off. I had just come back with him from two weeks in Mansfield (where my parents live) and he had been slowly getting worse: very whiny, low activity and pale. I had them draw a CBC (complete blood count) as well as vitamin deficiencies hoping for something as simple as low iron. His pediatrician thought most likely it was mono and sent some tests off to the lab to confirm. She checked his lymph nodes and his spleen and kidneys and didn’t find anything that pointed directly to Leukemia, but his bone marrow was slightly depressed. That evening his mono test came back negative, but his pediatrician still had some tests out to the lab and still thought it was a virus depressing his bone marrow, just not mono. On Friday, 8/30/19, his pediatrician consulted with a hematology group and she still said to come in Tuesday for a repeat CBC UNLESS he started acting extremely lethargic or had a fever.
Well, he had a fever of 101.8 that evening so we took him in to the pediatric ER. They have a really good lab in the hospital so they were able to tell us that he has blastocyst (an immature type of white cell that doesn’t function) in his blood, a pretty sure sign of leukemia. Grant, Luke and I got into a room and settled down for the long-haul.
The attending pediatric hematologist told us on Saturday, 8/31/19, that he has pre-b cell ALL (acute lymphoblastic leukemia). It is currently the most common and most curable type of leukemia in kids his age. They have a “well over 90% survival rate”, and have successfully treated kids as young as 3 months old (and some survivors of the same type are currently doctors and nurses in this hospital).
The doctors installed a port on Monday (he calls it his butterfly, because it’s access by a butterfly needle) while also testing his spinal fluid and doing a bone marrow biopsy. It was the first time he’s been put under but he did fine. He started chemo that evening. There is a boilerplate treatment for this type of leukemia that generally gets him into remission in 30 days. Longer term, treatment is likely to be three years.
As I’m sure many of you know Luke also had leukemia when he was younger but there appears to be no genetic link. This is a different type and while the medicines used to treat it are the same the supportive care is completely different. The doctors and nurses are able to do much more to alleviate the symptoms of leukemia and and have lowered the toxicity of chemo, and they do a much better job of keeping kids happy in the hospital.
Grant is still Grant, despite being in the hospital and enduring chemo. He’s still extremely smart and a little bit wiley, exceedingly verbose, and so very adaptable. This chemo will get him down, but not for long. We expect this to be just a blip on his radar by the time he goes off to college.