summerofsilence

Chemical Sleep and Bon Voyage

The day Beaudin had his port put in, January 19th, 2019 a fellow met us in the surgery waiting room and asked if we would be willing to sign Beau on for a study that was seeking to understand the effects of methotrexate on kidney function. All we had to do was sign the lastContinue reading “Chemical Sleep and Bon Voyage”

Dear Beau, on the day of your port removal,

Dear Beau, Last night you scored the winning run of your baseball game. I cried hot tears as you ran across home plate and into the dugout where your teammates crowded around you, everyone estatic. You struck out earlier in the game and were so down on yourself. The game had been a nail biterContinue reading “Dear Beau, on the day of your port removal,”

HuCART: Month 9 results

Earlier this month Beaudin and I traveled to CHOP for his 9-month post HuCART testing. It’s been impossible to write about. Not because the trip to Philly was that out of the ordinary, but because the weeks leading up to it were surreal. In late April dear Kamden passed away, and then a week laterContinue reading “HuCART: Month 9 results”

Two too many.

In the last two weeks I have received two texts from two families telling me that two new cancer children are in heaven. It’s two too many. The texts read the same. “He is in heaven.” “She is in heaven.” They were both expected, the first more promptly than the last. Even still. I’ve beenContinue reading “Two too many.”

A birthday doctor’s call

I hadn’t thought through that it would be his birthday when I confirmed the phone call with her. I guess when your son’s doctor says they need to speak to you, you don’t exactly “look at your calendar,” you just clear your schedule. I knew it was going to be about, I thought anyway, butContinue reading “A birthday doctor’s call”

Swiftly Kicked in the Stomach

*This is one of many posts that mentions our sweet friend Emily. I have made a separate category for the times I wrote about her. If you would like to read more about her, please click on the category “Sweet Emily”* This weekend it began- spring sports. Joshua hurried off in one direction with JudeContinue reading “Swiftly Kicked in the Stomach”

HuCART: Month 6 results Part 2

Catch up on Part 1 here. Jude didn’t want to be alone while he was in and out of throwing up. He was scared. Joshua and I took turns laying with him and assuring him he was going to be ok. At one point, laying on the bathroom floor he kept asking a lot ofContinue reading “HuCART: Month 6 results Part 2”

HuCART: Month 6 results Part 1

*unedited, sorry for typo’s* Part 1- LP results On Tuesday Beaudin had his 6-month, post HuCART procedures. As you’ll recall, his b-cells retuned in late December and despite returning to Philly and doing a boost in January, continued to come back strong. 6-months was technically February 8th, but because we were hoping the boost wouldContinue reading “HuCART: Month 6 results Part 1”

HuCART: 6 month CHOP visit part 2

You can read Part 1 of this update: Here. The benefit of a visit to Philadelphia without any procedures was that we got to have an in-person conversation with the CAR team. We are at a fork in the road, and it felt relieving to make a plan to move forward with us all inContinue reading “HuCART: 6 month CHOP visit part 2”

HuCART: 6 month CHOP visit part 1

Part 1 We are back from Philadelphia with everything and nothing to show for it. We had expected to have Beau’s 6 month LP and BMB performed, but the procedure didn’t happen because of a cold that he had been brewing for a couple days and seemed to hit it’s peak at the exact momentContinue reading “HuCART: 6 month CHOP visit part 1”