Hello!

First, we wanted to wish you all a (belated) Merry Christmas and a Happy New Year! We realize it's been a while since we've updated this journal (apologies for that), and we wanted to give an update on Sophia's progress.

Never in a million years did we think we’d be getting a medical degree in the middle of all this. There is an incredible amount of medical information that you learn as a parent of a child with a cancer, so bear with us as we attempt to explain it fully. Since we last wrote, Sophia has been progressing very well with her treatment. It's been a long three months with a total of six,weekend-long (Friday through Monday) admissions to Children's National Hospital, along with dozens of visits to her oncology team at Kaiser (all approximately an hour from where we live, give or take DC traffic). She has been receiving a protocol of intrathecal (spinal, a.k.a. “IT”) and 24-hour intravenous (IV) methotrexate (chemo, a.k.a. “MTX”) at her Children’s admissions, followed with a leucovorin “rescue” over a two-day period, along with intravenous vincristine (anotherchemo, “VIN”) at Kaiser. Both are along with daily doses of mercaptopurine (another chemo, a.k.a. “6-MP”) that she takes via pill. She will continue taking the 6-MP for the duration of her treatment (approximately three years).

Fortunately, as of New Year’s weekend, we have concluded the portion of her treatment plan (a.k.a. “Consolidation” or “Intensification”) that requires inpatient treatment; so, barring an emergency (fever, low numbers, infection, or change in protocol), that should be our last visit to the hospital for a while.We’re extremely grateful to the entire oncology team at Children’s. The nurses, doctors, child-life specialists, and volunteers have been beyond amazing. Sophia has had a few opportunities to play in their playroom, tricycle around the ward, enjoy art and music therapy, and even have some classroom sessions with volunteer teachers. She even made a friend her agewho was receiving treatment at the same time. All of this went a long, long way in making these hospital stays as enjoyable as possible. Also, nurses do not get enough credit for being as awesome as they are.

Her primary oncology team at Kaiser is happy with her progress. It took some slight modifications early on; however, they figured out a dosage schedule that appears to be working well with her body to allow her to fight off the leukemia with as minimal side effects as possible. We’re still encountering the expected problems associated with chemo, notably: nausea, appetite loss, insomnia, mouth and body sores, along withalopecia (good thing this kid can rock some short hair!)However, both her teams at Kaiser and Children’s have been extremely quick to adapt her protocol (where possible), and/or provide remedies to help alleviate some of these side effects. It’s a long and tiring slog, but we’re making our way through it, one day at a time.

As a bit of more positive news, we had a follow-up Magnetic Resonance Venography (MRV) on January 4, 2023 where we were able to confirm that her cerebral venous sinus thrombosis (CVST; brain blood clot) has been fully resolved. There were no signs of residual venous thrombosis and no detectable changes in her brain tissue. Fortunately, this issue appears to have been caught well before any damage had been done (i.e., stroke). Bye-bye, “Mr. Bob” (Sophia’s affectionate name for the blood clot)! Her doctors will continue to monitor the clotting factors in her routine bloodwork, but this appears to be one win that we can truly celebrate! No more injectable blood thinners either! Phew!

Beginning January 24, we have moved into the third phase of treatment, otherwise known as “Maintenance”, which is targeted to last for the next three years. There will be 10-12 (depending on follow-up testing) cycles of treatment and each cycle lasts about 113 days. All of this is subject to change if her numbers decrease and the plan needs to be revised. We have been told that the study (treatment plan) that she is on has about a 95percent success rate (determined by five-year survival rate). This first cycle will start with a lumbar puncture (sample to ensure that the leukemia has remained out of the spinal fluid), IT MTX, IV VIN (through the port in her chest), her daily pill of 6-MP, enalapril maleate (to prevent hypertension, common pediatric leukemia complication), Colace (because microtears from constipation [which is a side effect of chemo] in the gastrointestinal lining can cause septicemia (blood infection) in someone as immunocompromised as she is), MiraLAX (see Colace), and Vitamin D (to avoid bone demineralization, another common complication with pediatric leukemia). AsMaintenance progresses, she will also take a once-a-week pill ofMTX; and will have several “pulses” of Dexamethasone (a.k.a. “DEX”). We’re grateful that medication apps have come a long way!

While getting here has been a true test of resilience, we are grateful for the unbelievable outpouring of love and supportfrom family and friends, both known and some new-to-us in our surrounding community. Specifically, we would like to thank the following (although we know there are many many more!):

The #SophiaStrong Blood Drive Crew, spearheaded by Allison Tully (a.k.a. “Lady Tully” as our kids call her), and Kate’s alma mater, Our Lady of Good Counsel High School, for hosting, especially: Lauren Costello, Lauren Wickard, Catie Brown, Beatrice Hanson, Angela Pachucki, Laura Pachucki, Patti Perfetto, and Lexy Constanzo, Student Volunteers (sorry for any misspellings): Kenneth, Can Conrad, Nicole Bracket, Emma Warner, Franco Amodea, Asher Pircorch, Eddie Battista, Anna-Lucia Clark, Caroline Filer, Maya Johnson, Maeve Stilman, Brooks Perry, Elizabeth McDonnal, Isabelle Magyar, and MORE!!! Donors, especially: Mr. Jim Iciek, Laura Pachucki, Mr. & Mrs. Murphy, Mrs. Treanor, and Rosie Lapp.

Meal Train Dinners: Donna Hance, Penny Lapp, Patty Argyros, Rosie Lapp, Beverly Lapp, Ida Nacpil, The Womack Family, The Griffee Family, Chris & Amelia Sakowski, Ariel Bean, Megan McClung, Jeanne Padgett, Anne Henig, Sue Iciek, Margy Crivella, Ann Dickman, Jessi Collins, Mary-Margaret Blum, Katie Thomas, Mary Susan Roorda, Erin Barrett, Annie Matanin, Susan McKisson, Rachel Gray, Stephanie Schneider, Marianne Kusbit, Christina & Will Tees, Bill & Carol Jusko, Jenna, Matt, Tate, & Baby Roe, Ashley & Jake Meredith, and Cye & Rob Lloyd.

Thank you to the Casey Cares Foundation for the Elsa wig, family movie night, blanket, and tickets to Lights on the Bay. Special thanks to the Crivella family for their introduction to this great organization!

As of this writing, it’s been just over 180 days since we went to urgent care for a follow-up on a bad fever; not realizing what was in store for us from that point onwards. It’s been an absolute whirlwind, but with the amazing medical team that’s supporting Sophia; and with the love and support of friends and family, we’re optimistic as we move forward (also, we’ll promise to be a little more timely with the updates!). Again, thank you all so very much!