Help Avery Access Life-Saving Treatment

Dear Friends and Family,

I’m writing to share an update about my daughter, Avery, and her journey with Acute Lymphoblastic Leukemia (ALL).

As many of you know, when Avery was just three, she was diagnosed with Acute Lymphoblastic Leukemia (ALL). We were less than 3 weeks from celebrating Avery’s fifth year off treatment - a milestone that would have meant she was a cancer survivor. But on July 24, 2024, Avery had a confirmed relapse of Acute Lymphoblastic Leukemia (ALL) at the age of 11.

With all of this, Avery also has thyroid disease, and her numbers were off the previous months, so we were thinking (hoping) some issues she was having were due to trying to get her thyroid numbers back in check. A couple of weeks before her relapse was confirmed, everything started happening fast, where my wife just knew something else was going on, afraid of what may be coming again, so she requested additional blood tests along with her thyroid tests. The next day, we were called and asked to rush to the hospital, thus again, like the first time in April 2017.

Our hearts just broke in two, to say the least, as this was an all-too-familiar scenario being thrown right back into the beginning again...almost worse as we knew what it all meant going in this time. So there it all started, again, rushed in the next day to surgery for another mediport placement in her chest right above the first scar, ready again for countless blood draws, infusions, transfusions, etc. At that same surgery, she had a bone marrow aspiration, bone biopsy, and spinal tap to confirm it was the same leukemia as in 2017 and what disease burden we were dealing with. She immediately needed blood and platelet transfusions. It all started hitting Avery very hard, very fast, and in very, very much pain, trying to find meds that would even ease it a little for her and watching her in that much pain and couldn't help her...beyond words. We were approached with several options for Avery for relapse treatment. After a lot of questions, research, and prayers, we chose an immunotherapy option. We then had to get the disease under control before being able to proceed with the immunotherapy process. Of course, any of this process has not been easy on our baby, and the pain of watching and putting our innocent child through all of this.... Well, there just are no words to describe any of this. Anyway, in a nutshell, she had more temporary lines placed on the other side of her chest/neck under anesthesia, chemotherapy infusions, blood, and platelet transfusions (near daily for a while for weeks as we had a hard time getting them to stick). She has had countless bone marrow aspirations, bone biopsies, and diagnostic spinal taps under anesthesia, and all of it just too much... Just way too much for an 11-year-old to have to go through once in her little lifetime, much less, again. We were inpatient for 6 weeks straight that initial relapse diagnosis. We have had too many stays and infusion days and clinic visits to list since then and too many details to even be able to describe. We will never get used to watching her little precious body be wheeled away from us with her saying "Where's Mommy?" going to surgical procedures with Mommy walking with her until they shut the doors and won't let Mommy be there anymore....anticipating the moment to be reunited with her and praying that she will be okay in others' hands.

In the middle of November, Avery started her CAR-T immunotherapy to fight her leukemia; there was no evidence of leukemia when starting which was a good thing. In December, her numbers were good; the doctors thought it was working and even said "Go live your lives." A moment we got to breathe and treasured but didn't last very long. In January, numbers showed it was failing. So in February, after another round of 4-day chemo infusions to prepare her body, she had a reinfusion of her CAR-T immunotherapy. But the doctors just told us that these treatments haven’t worked. They have recommended a new clinical trial for another advanced immunotherapy at a leading children’s hospital in another state.

The logistics of all this is going to be really tough for so many reasons: physically, mentally, financially, etc. Avery does not even like the feel of an elevator so we are not sure how she will even do on an airplane especially as many times of getting on one we may have ahead of us. We are trying our hardest to get the very best treatment option for Avery to avoid the final option of a bone marrow transplant which is extremely hard and life-changing for anyone, but especially for a child born with Down syndrome. And I don't want to list the statistics of that one.

It will take several weeks of focused care, involving travel back and forth, far from home. As we move into this next chapter of Avery’s fight against leukemia, we’re facing some big financial challenges. The costs of medical treatment and all the other expenses, like lodging, food, medical supplies, transportation, car rentals, and multiple flights, are really overwhelming.

Even though this is a super tough time, our determination to support Avery in every way we can is still strong. If you feel moved to help us out - whether it’s by sending us kind words, sharing Avery’s story, or contributing to her care - it would mean the world to us.

We’ve already been so blessed by the outpouring of prayers, love, encouragement, and generosity from our community. This kindness love and hope that God has blessed us with continues to help keep us going as we navigate this journey together.

Together, I know we can help Avery keep fighting for the brighter, healthier future she so deeply deserves. From the bottom of our hearts, thank you for being part of our lives and for standing with us during this very painful time.

With love and gratitude,

“fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.” ‭‭Isaiah‬ ‭41‬:‭10‬ ‭

‬‬“I can do all things through him who strengthens me.” ‭‭Philippians‬ ‭4‬:‭13‬ ‭