I debated on that title for hours. I mean, the audacity to consider putting that in print.
I reminded myself I can always go back and edit it and so I finally just hit, “publish”.
This blog is more of a place holder than a printing press, I remind myself over and over.
So fine, long-term follow-up, I’ll call it what they did and stuff down the urge to scream, “BUT HOW DO ANY OF US ACTUALLLLLLY KNOW!!!!!!!!”
I forgot to mention sooner, that the day after I posted all about our selfless sacrifice to the study, our social worked emailed me to plan our next visit and let me know that all costs were covered. Once you pass the 12-month mark, the study pays for all aspects of travel.
Why? Well, because, it turns out, most parents do the same dance we were doing: “What do we owe to these people that provided us a way out?” And during that dance, many have decided they owe deep gratitude, but not more money, poured into the void of travel, and so they stop attending follow-up appointments.
There is nothing new under the sun. Especially not our post-study two-step.
To remedy, the study decided to cover all costs for the patient and a caregiver, once they are in “long-term follow-up.”
The social worker passed along the info so very casually, in-between “What’s your date of brith?” and “What hotel do you want to stay at?”
But for me, it hit. I felt like grabbing the mic and announcing, “Ladies and gentleman, can you FUCKING BELIEVE we have made it to long-term follow-up?!?”
Can you? Can you believe it?
Well, sure you can. I mean, most of you I don’t even speak to in real life. You casually pop-in on this story every couple weeks when there is a new post. And not in the trenches, or rather, in your own trenches, I am sure it is easy to imagine that time has passed, and Beau has survived, and this is the way things work out.
For me. It both feels like forever since diagnosis and like yesterday since relapse. Like it will never end and like it ended a while ago.
But regardless of how you or I feel, the study deems him to be in long-term follow-up and that means that in addition to appointments being spaced out to every 6 months, they pay for all of our travel.
In the end, this isn’t the biggest deal because, as I mentioned, we can afford the flights. BUT it did feel a touch serendipitous that I found out about it the day after I posted my two-step on if we should surrender to spending the money.
Hello? Universe? I would like to surrender to one million dollars. ( Let’s see where this law of attraction can take things.)
(Just kidding, I don’t really believe in the manifesting. Seen far too much to kid myself that we have the controls on that.)
(And in fact, I have un-followed all the kooks who clutter up my feed with ‘💫manifest!💫’ in their bio. If you think you can manifest your future, I encourage you to watch children die of leukemia. Yep, I said it.)
(I shouldn’t be so harsh, God knows I used to believe things I would cringe at now. And God knows someday I will believe things I didn’t know were possible today.)
(Who knows how it all works, but I do not think it is by way of toxic positivity. I learned early that Everything Happens for a Reason: And Other Lies I’ve Loved was how to understand that there is No Cure for Being Human).
(If you haven’t read those books, please do so. They are my manifesto.)
(Why am I writing with parenthesis?)
(Ok, I’m done.)
A New Companion:
We are going to Philly at the end of the month, on the dime of the study AND I had the wherewithal to master plan all the things. Let me explain.
Thanks in good part to the insane cost of taking your child through pediatric cancer, we have a Southwest Companion Pass. Medical debt>> credit cards>> airline benefits.
(While the kooks are manifesting, can they all manifest that Southwest doesn’t go under???KTHANKSBYE.)
That means anytime I fly, someone else flies with me, for free. What a consolation prize! So, with flight costs covered, instead of my normal companion, Beau, I swapped for a new companion: Jude.
My, ‘This is long-term follow-up, baby! Jude-man, YOU ARE COMING WITH US!” companion.
COVID restrictions have lifted so we can bring siblings to appointments, the study covers flights so my companion pass is freed up, and since it’s just labs and a physical exam, we have a 40-minute appointment book ended by two days in the city of brotherly love.
Naturally, telling Jude that he got to come along to Philly was a delight. Jude’s excitement is big and consuming, like I wrote about here. He has already planned where we will go for donuts, mini-golf and arcade games. For Jude, Philly is wonder and joy and all the perks of travel.
Jude, my sweet fire child, come along as we make sure the healing flows through all of us. Let it be that you are my long-term companion pass. No turning back.
In other news, a dear friend of mine’s daughter is having her 1-year post bone marrow transplant exam today. Would you pray, manifest, believe, hold space, WHAT HAVE YOU!, that she receives the news we are all desperate for:
That her daughter, Maeve, is healed and whole.
I wrote about her a bit here. There is more to be said as she has grown near and dear to my heart as we’ve walked the relapse road together. But for today, none of my words matter. All that matters is the results we will hear early next week.
4 thoughts on “Long-Term Follow-up and a new companion”
Wohoo! Long Term Follow Up Care! Let’s Go!
Praying for Maeve. So excited for Jude. Thank you for the books recs. Perfectly written as always.
Bravo on all of it! I will pray for Maeve today.
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It is with great joy, gratitude that you have arrived at this wonderful place – ALL of you!! Much love, Bets, to you, Josh, Beau, Jude and Selah.
Thanks JoAnn. Thanks for being here every post along the way ❤ much, much love.