Happy Holidays and Happy New Year!
Wow! 2026 is here and we are welcoming this new year with hope and gratitude. We had an eventful holiday season which was full of making memories and conquering medical milestones.
October 2025
As a family we fully embrace the holiday season starting with October. October has always been a fun and eventful month that we have always looked forward to. This year, the month started off with us being able to bring Ariana home. We had her appointment and we were told that lab numbers were continuing to hold steady and were looking positive. We were also told that we would be moving from weekly appointments to bi-weekly appointments. It was such good news because we finally could leave Ft. Worth Ronald McDonald House and enjoy the comfort of our home, which for Ariana and myself, we had not been able to enjoy except those very first 3 weeks after we moved in and before her diagnosis. We had a big day cleaning, packing and moving out of RMH which concluded with a 2 hour drive home - which a HUGE thank you to my parents for helping with everything to get us back home. It was amazing to know that Ariana was doing so well and that her transplant cells were thriving. The day we got to come home was October 1st, which was also Patrick’s and my fifth wedding anniversary. We didn't do anything super big or exciting but we stayed home and enjoyed the comforts of our home. It was the best anniversary with all of us together.
October 15th we took Ariana in to get her CVL, or as Ariana knew it as "Chest Tubie", removed. This line was the one that she had placed the day she was diagnosed. It was comprised of two lumens that delivered medicine and fluids directly into her blood stream. Due to the nature of the device, it carried a high infection risk and has its own care protocol that was a big part of Ariana's daily life since April. We had to clean and flush each lumen at least once a day. When we were in the hospital the nurses would complete these steps for us, but when we were home, we had to do it ourselves. It was always a task and tedious."Don't touch...stay still", clean for 30 seconds, dry for 30 seconds all with a very curious and involved one year old. Because the CVL is literally direct access to her blood stream, we could not let it get dirty or wet. So that meant strict skin care and sponge baths.
I truly didn't know that the bathtub bath I gave Ariana before being diagnosed would be her last one for 6 months. No more splish splash and no more bath toys. It was something that she loved as part of her nighttime routine that was taken away so suddenly and unexpectedly. So, we were so excited to reach this milestone to have it removed. It meant that she was not as reliant on it and that we would not need access to her bloodstream as frequent. It meant more freedom for her and one less task that was required to do each day. But for her - it meant that she got to enjoy one of her favorite things again - bath time.
October is a busy month for my family's birthdays, including my parents. My dad's came first on October 9th. We went to my parent's house and had a quiet dinner with them and celebrated him. My mom's birthday is the 27th of October and we again spent another peaceful night with them celebrating her. I can't fully speak on my parents' behalf but I know that having Ariana at home celebrating with them was the best birthday gift and sparked a lot of joy knowing she was doing okay.
After celebrating birthdays, it was Halloween! If you know my family well, you know that Halloween is celebrated BIG. We love the spooky season. Since Ariana was still recovering, we knew Halloween would probably look very different: masks, early outings, and of course, social distancing. I had known for a while that I felt Ariana would like dressing up as Glinda from Wicked. Pink dress, crown and wand...she knew the part well. After thinking about her costume more, I remembered her first Halloween costume. She was an Angel and since she wasn't walking yet, my mom and dad helped put together a cloud covered wagon. She was able to enjoy trick-or-treating in the wagon and it looked like she was floating in the clouds! It was a huge hit. This led me to the idea for her version of Glinda, The Girl in the Bubble, using her wagon again.
I sent my parents on a quest to realize the vision and they absolutely knocked it out of the park. It was perfect. Ariana got to stay enclosed in her "bubble", so we didn't have to keep her in a mask and it helped with social distancing because she was in her own little space. She had the best time! She loved the bubble, especially since my dad rigged a bubble machine underneath that created bubbles when she hit her "Tap to Bubble" button. I don't know how we will ever top this costume. It was one-of-a-kind and absolutely perfect for her at this stage of her journey.
November 2025
Throughout my life, I always felt that October was my busiest month of the year. Well, November is now a very close second. Our family also has a lot of birthdays this month on my side (December is a big month for Patrick's side - so these 3 months are really just a blur). For us, a big birthday we have in November is our very own, Ariana.
We were hoping that we could have had a birthday party for Ariana with friends and family, however, since she was still fresh out of transplant, her care team didn't feel comfortable with her being around small kids and big groups. We did, however, get to have an adults only gathering to celebrate her. We weren't able to invite everyone because we were limited to just 10 people outside of Patrick and I. I was really bummed just because I had been planning for her to have a Wicked themed birthday, but luckily, we are hopeful to have a larger celebration this spring. I honestly can't wait to see her interact with kids. She was too little before and now is coming out of isolation. I hope that it doesn't set her back. I don't think it will. The girl says hi with a BIG wave to everyone she can while we are out grocery shopping! 🤣 Even masked up, she isn't shy! Anyways, we had an amazing time with those that came out to celebrate her at her "adults only" gathering. She REALLY enjoyed the cake lol
As part of the Wicked activities, we got to take Ariana to her very first movie theater movie and what better choice than WICKED itself! They had re-released it in theaters ahead of the sequel coming out and we 100% took advantage of that opportunity.
Please don't mind her makeshift mask. LOL Two of her kid masks broke and we only had the adult one left!
We also got visits from our dear friends Tia Krystyn, Titi Cici and Uncle Julian. They had visited us a bunch during our stay in the hospital so it was nice to get back together with them and enjoy time together outside in the real world.
November concluded with a much needed visit with my grandma. My parents drove into Houston and made the round trip back with her to Dallas. It was so special to have her with us for Thanksgiving. She is my only living grandparent and Ariana's only living great-grandparent, so making memories and spending time with her is precious. We feel so lucky. We had originally planned to have a grand thanksgiving at home, but logistically it didn't make sense for us. So we took a page out of Patrick's family traditions and went to have thanksgiving lunch at good ol' Cracker Barrel. It was SO busy, but luckily we were able to get a table in the corner and enjoyed our time eating turkey and biscuits! It was so delicious and the best part was not having to clean all the dishes after.
December 2025
Honestly, December is an absolute blur. I have been writing this blog since January 15th and already missing the details of that month. Ariana had a doctor's appointment on her day +148. Overall, her labs looked great. They remained in a good range for her stage of recovery and continued to show improvement towards "normal" blood counts. We also got to get her a flu shot. It was her first vaccine since getting her transplant. I am not sure if I have ever fully explained, but since we wiped her entire immune system with chemo prep for transplant, she will need to get all of her vaccinations again. It was very reassuring to be able to get a flu vaccine in December, espeically with the horrible strain that had been circulating. We also got drop off some gifts at Cook's oncology floor. Spending the holidays in the hospital is the unwanted reality of many families, so we wanted to support them and show them that each of them is being thought about.
We enjoyed a nice Christmas at home with my parents. It was a lot of fun decorating our new home with all the holiday decor. It really lit up our home! We haven't had a chance to really put up any day-to-day decor so it was a welcomed change to have fun things set up.
January 2026
We had celebrated the new year at my parent's house which included doing some long standing traditions like eating grapes, cabbage, black eyed peas, and letting the air come through the house "out with the old, in with the new" style.
Ariana went to bed and the adults stayed up to watch the series finale of Stranger Things and ring in the new year. Now I want to discuss something about Stranger Things, but I am including a *spoiler alert* in case you haven't had a chance to watch it. So if you want to prevent spoilers, please skip the following drop down section:
SPOILERS INCLUDED
Now... this isn't my review of the show. This is my rant about it as a parent of childhood cancer warrior. Watching movies and tv shows is a big part of our family's life. We love it. We have always been big fans of Stranger Things and were so pumped for this conclusion. In preparation, Patrick and I had started rewatching the show. We were stoked to go back to the beginning to see if we had missed anything or if we could foreshadow what was to come.
Let me pause here to say - yes...I know this is entertainment. yes - this show is dramatic. and yes - I am aware that TV and movies will pull from real life trauma to cause emotion to the audience. I know...!
Well - as some viewers of the show may recall, the fatherly figure of the show, Hopper, previously had a daughter named Sarah before Eleven showed up in his life. This is his trauma arc. I can still feel the sinking feeling in my stomach when we watched the episode that dove into Hopper's past to reveal his daughter Sarah, struggling to breathe at the playground, and it rushing to me mind what happens next. I had forgotten this side plot. The side plot that is Sarah having pediatric cancer.
In that moment when we were watching that scene together, we literally just paused and looked at each other because we remembered where this show was going. Scenes of his daughter in the hospital bed, bald and hooked up to machines, with parents having hallway conversations with doctors, reading books in the hospital bed while she's hooked up to oxygen, and then showing Hopper and his then wife crying in each other's arms while the flat line tone filled their ears. Unfuckingbearable.
It took us right back to room 553 where questions were answered with hopeful but not concrete answers, where Ariana was hunched over vomiting uncontrollably, where she was hooked up to (at times) 7 IV pumps just for medication to save her life, and where she endured such medical trauma that will stay with all of us forever.
The whole storyline really pissed me off. Primarily because, as fictional as it is in the show and how unfathomable those scenes are, that shit happens. Every.Single.Day. It's not fictional for childhood cancer families. It's real life. And I HATE that entertainment uses it has an emotional pull on audiences.
Hopper's trauma is a big part of the show and played a role in the series finale. We all knew it probably would going into it, but it still made me cry and feel all those same emotions again.
Stranger Things is not the first show to incorporate cancer into their storylines and it won't be the last. I don't expect it to change, because at the end of the day it is real life where stories are pulled from. Shows like these just affects us more as a family now, and I just am upset that there are shows and movies out there now that I just can't enjoy behind my rose-colored glasses anymore.
It was a pretty chilly evening so we didn't see much fireworks, but all in all, we enjoyed our time together.
Ariana had her next appointment on January 7th. It had been a full month since her last one in December before the holidays. Going to monthly visits is celebratory but anxiety inducing. Before, the frequency had been every two weeks, so my mind was able to go to many places all at once with the downtime between appointments. This appointment also was a milestone appointment for her 180 days post transplants, aka 6 months post transplant. It marks the point where doctors expect her marrow to be stable and working well recovery to be moving from “high-risk” to more routine monitoring.
The labs are extensive for this appointment because they look at all her normal labs like CBC, magnesium, ALT, and IGG, but they also look at her chimerism and immune studies. As a reminder, a chimerism test measures how much of the blood or bone marrow comes from the donor versus the patient, to see how well donor cells have engrafted after a transplant. For a successful bone marrow transplant, you want this number to be as close to 100% as possible. As for the immune studies, this lab test looks for the presence of an immune response from Ariana's new cells when exposed to irritants. This provides information on how well her immune system is performing.
Unfortunately, lab draws through her port are still pretty traumatic for her. She knows what's about to happen when we go into the room and it was a lengthy draw because they needed a large volume of blood for the labs they were running. Her "favorite" part of getting accessed, is when it's over, of course. But also when she gets to wear her "boo boo" aka "wow wow" band aid - aka band aid with puppies on it. She usually works her charm on the nurses and leaves with two "wow wow" band aids and typically gets over what happened pretty quickly. Thankfully.
I am grateful that most of the labs show up on our app pretty quickly while we wait to see our doctor so I can review them in real time and think of any questions. I already had a lengthly discussion planned because I had come across some studies on maintenance chemo for Ariana while she recovers after transplant. It's fairly new science, so I had sent the studies to our care team the week prior and they were discussing amongst themselves. When having this discussion with our doctor at the appointment, we had come to the conclusion together that we would not pursue maintenance chemo. Primarily because the studies that had been done, weren't exact scenarios that Ariana had encountered - like going into transplant with disease still in her body (she was MRD, minimal residual disease, negative) and having refractory AML (AML that does not respond to standard treatment protocol - she achieved remission after cycle 1). Another important piece of that decision was weighing the overall exposure to chemo and taking something off the table that we could potentially need later if she needed treatment again. With all that to consider, we decided it was not something we wanted to pursue. At the end of the appointment she got a second dose of the flu vaccine (needed a second dose because of her immature immune system) and her first pneumococcal vaccine. It was recommended to get the pneumococcal vaccine because due to her treatment, her lungs are very fragile and are at risk for infection. She is on a maintenance antibiotic to protect her, but the vaccine offers another layer. She will get another dose in March.
Thankfully, Ariana's labs all came back normal and expected for this stage after transplant. It was the first time all her numbers were in the green. Her chimerism showed overall 99.1% donor cells and her immune studies showed normal function. We celebrated this victory and are onto the next milestone at 9 months post transplant.
While we were at the hospital, we also completed a swallow study. This was to look at her swallow dysfunction again. Luckily, the scan showed no regression, but also didn't show full improvement. We will continue to work with speech therapy to help her. Here is a picture of her sitting in the chair where they perform the test. It consist of her swallowing barium and water and the, doing a live X-ray to see if she aspirates on the liquid. She was cracking me up in this chair!!
We also got to got out to the aquarium with some dear friends - Aunt McKenna, Uncle Evan and sweet Bryn - for the very first time! It was so nice catching up with them and seeing our two littles enjoy their time together.
We also had the most amazing time in the snow storm! We were a bit worried to see how it would pan out in the new house, but everything is still in working order. We also loved being able to spend time in the snow and play play play!
Her most recent appointment was today, February 2nd. All her labs came back good and within range for where she's at post transplant. She was in really good spirits and actually talked with the doctor for once today. Usually she doesn't want anything to do with the staff because she's scared, so it was nice to see her come out of her shell a bit and heal from her trauma. One day at a time. We will continue to monitor her CBCs, magnesium, IGG, ALT, and creatinine. She will have her next appointment in March!
We also continually pray over Lennon, George, Elianna, Dominic, Aiden, Reveah, Kehlani, Lilah, both Carters and every other child that is facing challenges or recovering from their medical journeys.
Thank you all for your continued love and support. We are so grateful for our village and we stay hopeful for the new year.
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