Since the last update, Aspen completed her fourth round of outpatient chemo and Ashley has gone through back surgery (disectomy), we are looking forward to some time away. Life with a medically complex child is unpredictable and rarely easy. Add into that mix, a caregiver recovering from surgery, and well, we are grateful for family who stepped in to help. Neither Ashley’s surgery nor Aspen’s chemo were expected that week, but that’s how our life goes.
In the days leading up to Ashley’s surgery and the week or so afterwards, both kids stayed at Boma and Papa’s house down in Newport so Troy could work and care for Ashley. Fortunately, Boma was able to take Aspen to all of her chemo appointments. At this point Ashley’s mom knows the hospital as well as we do, having spent nights and days beside us. We balanced the kids going from Newport to Cranston for almost two weeks, we even spent Easter eve in Newport, as an egg hunt and all the festivities were easier on Ashley with extra help.
The kids enjoyed the Easter egg hunt, but we learned a valuable lesson; don’t put out the eggs the night before. Our attempt at ensuring the kids didn’t see the Easter Bunny by hiding the eggs that night before was thwarted by various animals that enjoyed a sugar buffet. Plenty of eggs remained, but finding out which candy the animals liked added a new element. Elliott made sure Aspen found eggs and even shared a few her. With every holiday that passes we are reminded of how fortunate that we are, that Aspen was able to celebrate with us. Yet, at the same time, holidays also amplify the fight that Aspen is battling and conjures the thought of whether she’ll make it to see the next version of that holiday. We’re also reminded of fellow cancer parents who are missing children at their easter egg hunt this year, whether they’ve crossed the rainbow, spending it in the hospital, or simply not well enough to move. We carry a lot of grief daily, but holidays bring an extra layer of emotions. Ending each holiday brings some relief and a check mark of another year Aspen is with us, and we can head into the next family event.
With Easter over we dove into the week, preparing for Aspen to receive another dose of STRO-002 and her donor lymphocyte infusion (DLI), i.e. disease fighting T-cells. Knowing that the smallest thing can throw us off schedule, we responded to every sniffle with a temperature check and deep breaths. Fortunately, nothing stood in the way, and on April 22nd, Aspen’s cell infusion went off without a hitch. Aspen’s cell boost came from the same donor as her transplant. With the DLI we are hoping to avoid a second transplant by using DLI to induce chronic graft vs host disease effect (GVHD), which in turn will create a graft vs leukemia effect (GVL). Whereas GVHD attacks host organs, GVL attacks leukemia cells, i.e. the silver lining. Like transplant, we need to proceed with caution and not push it too far, which could kill her.
Intentionally creating a chronic disease for your child is mind bending. We are happy she is alive and want to keep it that way, so if we have to control a chronic disease for the rest of her life, then so be it. GVHD can manifest in many ways, mostly attacking major organs, e.g. skin, eyes, liver, GI system, and lungs. The doctor’s are speculating that because Aspen has a sensitive liver it could manifest there, so we keep a keen eye on AST and ALT levels.
At this juncture, Aspen will receive two more rounds of chemo, inclusive of STO-002 and DLI. In between we’ll be going to clinic frequently to monitor for any and all signs of GVHD, and respond accordingly. During transplant, people receive methotrexate to, among other things, prevent GVHD, yet here we are hoping it happens. We’re still under a shared care arrangement where chemo and STRO-002 are done at Hasbro and DLI in Boston. We are finally at a point where we feel like both teams are working together and communication has been opened up to us through the teams; we have direct email addresses to the doctors, a privilege we don’t abuse and what some would believe is a right for what we have been through. Streamlining communication and finding ways to make sure both teams are on the same page has been a huge haul for us and it’s almost as we have our own little Peck healthcare system on Cranston St.
The HUGE relief is that last week Ashley and Aspen were both cleared for take off to Disney World! Ashley will continue taking pain meds, going to PT, and taking it easy as much as possible. The surgeon told Ashley that Disney will be the ultimate PT, so supportive sneakers will be worn and the miles will be put in! Aspen is already testing out her Minnie ears for the trip. Aspen’s numbers are looking good, meaning her immune system is strong and she’s not having a lot of side effects from treatment. Speaking of side effects, Aspen is now a legal marijuana patient in RI. We’ll work with a physician to develop a tailored plan using cannabis as a therapeutic for side effects like nausea, pain, and appetite loss. Anyways, we are beyond excited for Disney next week, it’s going to be our one week of pure joy and no cancer appointments for a whole week!
Hoping to flood this page with Disney images when we get back, in the meantime, Ashley is active on instagram @ashleympeck if you want to follow along in real time.