Staying Star Strong

Hi everyone! Thank you for bearing with us and holding us close in your hearts these past couple of weeks. We feel all of your love and are very grateful for each of you. 🧡

Back on August 13, 2025 they performed a donor study, also called chimerism testing, on Ariana which looked at how much of her current blood is her "old blood" vs "donor blood". As you may recall the bone marrow is responsible for creating blood components (red blood cells, white blood cells, and platelets). Thus, this test was a very important piece of information that would indicate how well her bone marrow transplant is going and how much of her bone marrow is now donor and not her diseased marrow.

We went into transplant in best possible place: Ariana was in deep remission and had no detectable leukemia in her marrow. Transplant conditioning completely wiped out her marrow and, optimistically, all lingering leukemia that may not have been detected. The goal of the chimerism testing was to achieve 95% overall donor cells. And on August 18th we got news that...drumroll please...Ariana achieved 99.1%!!!! We were so overjoyed. And in Patrick's words, his marrow cells "went HAM!" 🤣

A big part of my last update was around Ariana's diagnosed VOD. It was very taxing and difficult to go through the rollercoaster of that complication. Labs every 12 hours, new medications, pain management and constant anxiety was our every day. We can't thank you all enough for walking through this valley with us and we are relieved to share that as of August 19th, Ariana's liver showed no signs of back flow, full patency and it was functioning normally. In the radiologist's words, "showing signs of resolved VOD". After hearing our doc tell us these findings, I felt like I could breathe again. Like I didn't have to hold my breath every 12 hours for lab results to return. Like there may be an end to this admission...

Lots of changes have happened over this last week and half because of this news. Our doctor decided it was time to start weaning off IV medication and said the words that we all have been hanging on to hear since the start of this journey, "Plan to discharge".

As of today, Ariana is officially off all IV medications, except for magnesium transfusions and a 4 hour IV for fluids. Planning to discharge has come with its obvious pros and some unexpected cons. The biggest con being learning how to give our almost 2 year old MULTIPLE oral medications. Luckily this has gotten better over the last couple of days, but we are all still learning. But the biggest PRO is that she can walk and play without being tethered to her IV pole 24/7. It's an incredible sight to see our little girl be a little girl again.

We have been "rooming in" this last week as we got some patient education - like how to care for her central line (a refresher since we have had this line since her induction chemo), how to care for her mediport, how to draw lab blood from her central lines for our clinic appointments, how to give meds (which we have a head start on, thankfully!), and overall just how to care for her after discharge.

Can you believe it?

The initial plan was to have Ariana discharge by today, August 29th, however, she still is needing magnesium too frequently for them to feel good about us leaving. I had an update written up ready to share earlier this week that her discharge was planned and she would be ringing the bell, but as we got her magnesium labs throughout the week, that plan slowly changed. Then today, our doctor told us we will need to stay a bit longer until she doesn't need magnesium for at least 3 days straight. The 3 day threshold mimics the maximum amount of time we would go without coming in to the clinic for labs and monitoring after discharge. As much as we are sad that we aren't leaving yet, we also find a lot of peace knowing that we are exactly where we need to be for Ariana right now.

As a lot of my fellow cancer families say, we are "cautiously optimistic" about planing for her discharge. We are taking it day by day, as we have each step of this journey. We will update everyone as soon as we see her labs improving and when we are getting closer to having an official discharge date.

Overall, Ariana is doing fantastic! She is eating great, drinking well, and playing like a toddler should be! We are enjoying each day with her and are feeling so grateful that she is feeling well. Her vocabulary is really picking up again, saying more phrases and loves telling us what's on her mind!

By far the biggest challenge we are struggling with is her taking her magnesium orally. It only comes in a a tablet form and does not taste good. After a lot of trial and error, we have found that she takes it best with some banana. On top of the magnesium, she is also taking 4 other supportive meds orally: an immunosuppressant/anti-rejection med, Antibiotic, Antifungal, and Vitamin D. She has become so much more compliant with her medications. We are so proud of her and are constantly amazed by her resilience.

Back on August 16, 2025, we were honored to be asked if Ariana would be the honoree for The Hustle's 5K and Mile run. The Hustle for Childhood Cancer Cures is a local organization that helps spread awareness and raises money for Childhood Cancer Research. Obviously, Ariana was not able to attend, but we showed up in her place and participated. We felt so much love and support from those who participated, and we are so grateful for our family that was able to come join us. It was a wonderful event to jump start September, which is Childhood Cancer Awareness Month. We will be encouraging our village to wear gold and help spread awareness around pediatric cancer throughout the month of September in support of Ariana and every other child who is facing the unimaginable.

It is upsetting to think that so much research and resources for children like our daughter may not be achieved because limited funding is allocated to childhood cancer. In fact, only about 4% of the federal government's cancer research funding is allocated specifically to childhood cancer, one of the leading causes of death in children. Instead, these initiatives are heavily reliant on the generosity of others, which we are so grateful for, but we are advocating for change. As we have shared, Ariana was lucky enough to be a part of a St. Jude Clinical trial, at no additional cost to us. This study, along with many others in the pediatric cancer world, are not solely funded by federal grants and rely on people's investment. It is very difficult to think that Ariana could not have had access to life saving and cutting edge therapy to help her overcome her extremely rare leukemia. And a lot of why she was able to was because of the research that is funded by these organizations that spread awareness for families like ours facing childhood cancer. Next month we will share more about the various organizations that have personally impacted our journey. And I encourage each of you, as you have been on this ride with us, to reflect over the next month with us on how this journey has shaped you and to help us rally for Ariana and for every child who is battling childhood cancer, because they are worth more than 4%. 💛🎗️

Thank you so much to The Hustle for sharing Ariana's story and for supporting research for Pediatric Cancer. Next month The Hustle will be donating all the funds raised to Cook Children's Pediatric Cancer Research, specifically for Acute Myeloid Leukemia in honor of Ariana. Catch us at the run next year in August 2026! We will be there again, and hopefully Ariana will be crossing the finish line with us this time.