Hi all, wanted to update, but haven’t had the words or energy to put in to a full post. But after a couple of personal texts about results I thought I would just post this real quick.
Beaudin’s b-cells are returning. They are at 20%. This means that the CarT is not persisting for the duration they prefer (at the least, 6 months) and as such it is considered necessary to continue some form of treatment. The long and short is I don’t know much about what all this means just yet, aside from the obvious: this is not what we wanted. But I don’t know exactly what a 20% return means (vs. let’s say 70%.)
Our appointment Tuesday was weird. It was the longest break from Children’s that we’ve had since January 2019 and yet, like always, everything felt normal. Although the nurse came in and said hi and “Oh, wow, Beau, you’ve grown!” and I stared at her and realized I had no idea who she was. That was a joy. Forgetting the nurses! What a pleasure! (bc it means we’ve had time and space to forget.)
I took the above picture of Beau as I watched him straight chillin’ on the hospital bed. He is so comfortable in a setting that is so abnormal to the childhood experience. It’s weird, comforting and disconcerting at once.
We got the results Tuesday afternoon, but have not connected with our team in Denver yet as they are waiting to connect with CHOP and make a plan together. Based on the vibe from Tuesday’s appointment, no one is in a rush, per say, to make a decision. The good (good! good???? good.) aspect of Beau’s situation is that we have time.
And time is good….. except when you are holding your breath.
The rough plan is to boost Beau with his CarT cells again this summer. Our *HOPE* is that the CHOP team will allow that to be done at our home hospital so we do not have to travel to Philly, for an abbreviated 3-week trip. Frankly, I will be surprised if all the pieces (read: red tape) falls in to place that will allow for it, but, hey, that’s what we want. There is no reason it cannot be done in Denver, medically, but because we are part of a study, the fine print is not as straightforward.
Otherwise, back to Philly we go.
Our dear friends are also headed back to Philly for the summer for a new CarT therapy and so inside of not wanting to go to Philly AT ALL, I do have a tender feel about being there with them, and visiting our family friends that we have in Bryn Mawr (a suburb). NOT the way I want to spend the summer, but the silver lining I guess. Or just lipstick on a pig, I don’t know.
More later. Aways more later. I have so much to say about feeling neutral about the recent results, and also exhausted that this will surely NEVER END. And I have a funny post that will some day be written about how silly my ego is as I get pulled kicking and screaming along this path. A post about the invisible strings that connect us in weird ways involving caringbridge and A.L.S. And a lot of other killer content….. if I could just create the time to get it all out.
More later. Thanks for checking in on us. And oh yeah, because everyone wants to know: Beau feels great. Although his last IV IG infusion (to enhance his immune system) left him with a headache so we missed school and hit up the local book store instead.
The Heavy Wait 
Love, and prayers.
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Thanks for sharing this update. We will pray everything could align for him to get his cells this summer in Denver. But sounds like you wouldn’t be alone if it was at CHOP. It must feel so weird to be in limbo like this.
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Thanks for reading, you know as well as anyone what it looks like to hold hope, and hold lightly to all the desires we have. xx
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You don’t know me, but I found your blog when searching for other families dealing with childhood illness (my 7-year-old also got sick in 2019). Turns out your husband and I both grew up in Deshler! He graduated with my older sister, Stephanie. Anyway…our other sister, Melissa, was in and out of hospitals our whole childhood and got IVIG every 6 weeks for 10 years, and she found two things helped with the headaches: infusing just the little bag of IVIG (not diluting it with saline), and getting a dose of IV benadryl before starting. I don’t know if this would help Beaudin, but I wanted to share the ideas.
I also wanted to tell you that, speaking from the perspective of the “healthy sibling of a sick child”–you are doing everything right. I had some jealousy and acting out, but in reality the experience made me and my siblings stronger, closer, and more empathetic people. The whole ordeal is FAR harder on the parents than on the kids. Melissa had four relapses and doesn’t remember most of the traumatic parts, mostly just the presents and movies and ice cream. My memories of her illness and treatment are also mostly positive–spending extra time with grandparents, traveling to various cities to visit her, etc. She did give me two pieces of advice when my daughter got sick: never leave your sick child without a parent (or grandparent) if you can help it, and give your child as much of a voice as reasonably possible (for example, if there are two treatment options that have similar success rates and equally horrible side effects, let the child make the final decision). You have already done both of these, so I just wanted to commend you on it. You guys are doing an outstanding job dealing with a truly horrible situation.
There are a whole lot of us from Deshler praying for your family. Hugs from this mama in Nebraska.
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Thanks for commenting, Melinda. This was a gift to read. Thanks for the IVIG recommendations. Also, the perceptive on being the “healthy sibling”. It is hard to know what everyone will take away from this, so I am thankful for your hindsight perspective! I really appreciate you taking the time to check in. Love to you all.
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