Jaxson is a smart little dude. He knows so much about animals and dinosaurs! He started his love of dinosaurs I believe when he was 3-4 years old and he just amazes me with the information he retains! He laughs at just about anything which is great for me.. because “I am one funny mommy” lol! He’s got an amazing imagination. He loves to play with legos, puzzles, and his hot wheel cars. He also loves jumping on our trampoline with his siblings, swimming, and going on adventures around the neighborhood with his younger brother..scouting out for “dinosaurs ” or whatever he decides it is that day. He just recently was with my aunt & uncle at their camp and took to fishing. He loves it!
Jaxson was diagnosed with High Risk ALL on 12-10-2018. He was admitted to the children’s hospital at UVMMC, where he stayed for 2 months. It was very intense for us and he had a few obstacles in frontline therapy. We found out that he has unfavorable genetics of his Leukemia. I believe it’s about 2% of all children diagnosed to have this genetic mutation called iamp21. He started long term maintenance in October 2019 & we are continuing his journey to date.
Jaxson had hip pain on & off for 10 days prior to bringing him to the e.r. He started to walk like an elderly man! The Friday-Sunday prior to the E.R. visit he looked ill, his skin color was yellowish, the area under his eyes was dark, and he wasn’t eating very much. Sunday 12-9-18 he developed a fever and in the evening he had sudden leg pain that was so painful he was crying. We struggled to get him to sleep and I knew something wasn’t right. I called his PCP at midnight and she wasn’t too worried about it but giving me the option to wait till the morning to go in to see them or I could bring him to the ER. I made my decision 15 minutes after hanging up with the doctor. We arrived at the ER at 1:45 am and once the bloodwork came back there were red flags.
Jaxon receives a high dose of chemotherapy because he is in the very high-risk category. Currently, in maintenance, he goes into the clinic to get iv chemo once a month + starts the dreaded 5-day steroids and LP w/methotrexate every few months. His schedule got messed up because he was hit with a few viruses and the flu in December and January, which postponed his scheduled LP’s. Emotionally I am drained and his behavior has become a challenge. We are a blended family with 5 kids. Jaxson has really latched onto me which is understandable. I finally lost it a couple of weeks ago and we as a family are currently involved in counseling. For me, it’s the PTSD and for Jaxson, we are still waiting on calls to find a good fit for him to have someone individually talk to him. So, our house is in a big transition period to rebuild our bond & structure & just be a little less chaotic!
I just love my baby! He is one special and very loved little boy. He doesn’t let cancer define him. And under these terrible circumstances, I as his mom have gotten to see this undeniable strength that is inside him and he amazes me every day!
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