Treatment - may the 4th be with you
Jack’s medications arrived on May 4th, 2023.
As Jason and I unwrapped it, I suppose it really sunk in that we’re administering chemotherapy drugs at home. We were optimistic & hopeful but also very worried. The oncologist told us we needed to handle the drugs with rubber gloves because it is toxic - yet we have to give this to our young four year old child.
The first month of of these meds were not pediatric formulations. They were capsules and pills we had to break apart & crush. We’d then mix them with Gatorade. He tolerated them really well and after a few days, we weren’t so scared anymore.
Looking back, on day 3, we noticed he was extremely tired and agitated. He had just started back at school so figured the combo of school and new meds were a tough thing for him to handle. We decided on the days he had all of his therapy appointments, we would skip school and let him rest…
After these photos, on Mother’s Day, 10 days into his medications, Jack collapsed at brunch.
He was upset with his sister & was trying to tell me the story but couldn’t talk he was so mad.
He started to turn blue and I said, calm down buddy and take a breath. I didn’t even notice but when he walked behind our chairs, he collapsed. I gasped and we just held him. Then someone was next to me telling me to call 911 but I tried, we didn’t have any service. Jason threw Jack in the car & our neighbors offered to take the girls. But he was only out for a second, maybe 2?
At the hospital they checked his vitals & did a quick MRI to make sure his tumor had not grown.
Everything was stable… so they diagnosed it as a behavioral breath holding spell.
We got home a few hours later…
Mother’s Day at Hopkins ER
But the episodes continued, by Memorial Day he had about a dozen.
In June he got a case of strep throat & then started to have balance issues, drooling, and his face was asymmetrical. His oncologist advised us to take a break on the meds, do a round of steroids, and see how he does. That seemed to do the trick because he was healthy & happy and no episodes all of June.
Okay, phew we made it through our first month of treatment! We got this… or so we thought…
