100 Days

100 days ago we were told that our daughter has Leukemia.

100 days ago Ariana was flown for treatment from our hometown to Ft. Worth via helicopter.

100 days ago we were settling in at the PICU after discussing with the oncologist what Ariana's treatment plan would be.

100 days ago we were sitting in a lot of unknowns, scared and confused.

100 days ago we embarked on Ariana's journey with Acute Myeloid Leukemia.

I literally just told my cousin, Halie, that I do my best work on this blog in the late hours of the night, so here I am. I tried really hard to get this out before 11:59 PM on July 20, 2025 (Day 100), but Ariana threw up and I couldn't finish in time. Then I accidentally posted the unfinished version, and NOW I am resending. Apologies for the two emails! Regardless, it's the most perfect night for reflection...but I also need sleep (obviously)!

We made it to day 100. It is incredible to think back on all the days that have gotten us here. We had our fair share of trials with Ariana's health while being on this path, but we have had miraculous moments too. Moments I could only dream of 100 days ago.

1. Ariana achieved remission after her first cycle of chemo then proceeded to achieve remission again after her second cycle. Both times also achieving a MRD negative status.
2. She then was prepared for her Bone Marrow Transplant where her daddy eagerly donated his Bone Marrow to her for her Forever Cure.
3. Today, July 20, 2025 at 10AM her LAST CHEMO BAG was hung. She officially completed her chemotherapy for treatment 11 AM!

I can't believe that we are HERE after all of the ups and downs. I think it's also only fair to recap all the interventions. I also finally got an accurate count for all the CT scans, MRIs, X-Rays, EKGs, Ultrasounds and Echocardiograms to date. Again, the updates from our previous post are bolded.

All I can say is wow. This girl is my hero. She has endured so much and all before she turns TWO. It's incredible and we are so proud of how strong she is. This journey has changed Patrick, me, our family and friends forever, but let's celebrate this milestone. 100 days bookended with her last dose of chemotherapy! I still can't believe it.

I am sure you are wondering how Ariana is doing post transplant. The first two days after transplant went really well. She had high energy and accomplished walking a mile around the unit by wrapping up her 25 laps. We knew the storm was coming as it typically does a week after her chemotherapy. It's just the time frame when the side effects catch up to you, so we knew low points were coming. This transplant regimen was the most intense chemotherapy she had ever gotten, but we enjoyed every minute of her having fun.

Truthfully, today and yesterday have been rough. Ariana hasn't been feeling well, but it is expected for her to feel this icky after transplant, so nothing unexpected, just difficult. Her fever started yesterday morning and it cascaded to having to all the things for when your child fevers on the cancer floor:

1. Get cultures done on all lumens from ports. Ariana has 3, so that's three cultures that they had to do.
2. Monitor fever every 4 hours and treat with Tylenol.
3. Remain in isolation until 24 hours after being fever free, as long as the blood cultures are negative.

As you can imagine, every child on this floor dreads this time. You have to stay in your room, you feel awful and you are just kind of bed ridden. It SUCKS. For Ariana, she obviously doesn't understand why this is happening so she just expresses herself by being cranky, clingy and just sad. All rightfully so.

Thankfully, her first set of cultures have stayed negative for infection so we are just praying that she stays infection free through these fevers. It's a necessary evil, and honestly, a hopeful one. What do I mean? In conjunction with the negative cultures, the doctors are optimistic that this fever is purely just her body is responding to the transplant and that the transplant "took" and is working on seeding itself in her bones (where the bone marrow is).

She is also enduring the side effects of her chemo treatment and is battling severe vomiting and diarrhea. Which as odd as it may sound, is just par for the course. It is so hard caring for her during these trenches because there isn't much that we can do besides get her through it with cuddles, Tylenol and Pain Management. We are praying that her fluids stay balanced and that her pain management remains to be enough to keep her comfortable while she gets through this. The doctors say that they expect her to be like this for a couple of more days, and then we hope to see some of her counts starts to recover which will help her feel better.

Just for a little more fun, we have added a new counter since our girl just loves Wicked so much! I wish we kept track sooner, but here we are.

This journey has been tragically beautiful, but our sweet little Ariana is continues to persevere and undoubtedly Defying Gravity, soaring away from this disease.

Thank you all for your continued support on this journey with us. We love you all so much! We wanted to thank you all again for your generosity towards us and being our prayer warriors outside of these four walls. We are so grateful for each of you.