Summer Staycation

WOW! We had an incredible response to our call for action to bring more donors to the bone marrow registry. Thousands of families like ours search for a bone marrow or stem cell donor for a second chance at life, and over 2,500 people signed up as part of our virtual drive for Ariana! For that, we are so grateful.

We were luckily matched with TWO unrelated donors (not sure if they were from our drive or not), which is a huge achievement, however, only one was looking promising based on the response and action taken. Unfortunately, the one donor that was following through could not meet the timeline Ariana requires for transplant. Due to the aggressive nature of her cancer, her care team was not comfortable with delaying her transplant due to the risk of her having future complications or exposure to infections that would make her transplant journey challenging. This being said, we are pursuing a different transplant approach that I will discuss.

All this to say - PLEASE continue to share the registry sign up with family and friends and mail in your swab kits! Countless families rely on unrelated donors every day to save their loved one's life. It is important to spread this awareness to help as many people as possible.

We stayed in the hospital for another week after my last post. Her counts took a bit to recover but finally on Monday, June 23rd, we were told that she had about 300 ANCs! Our care team felt confident that they could schedule her last Bone Marrow Aspiration and Lumbar Puncture for the next day. She also needed to complete two other things before her transplant as part of her pre-op care: a brain MRI and a hearing test. Luckily, we were able to schedule all four items together to lump into one anesthesia event. We also were told that we more than likely would be able to be discharged after her procedures and tests. Ariana came back from her procedures in the late afternoon and we were able to head back home.

Switching gears...Haploid donor.

Parents are always a haploidentical match for their children. We were told that we could potentially donate to Ariana if an unrelated donor was not found. Once it was determined that she matched with an unrelated donor, that is what became the plan. However, on the day before we were discharged from the hospital, we found out that our unrelated match fell through because of scheduling conflicts. Ariana needs her transplant by July 20th, and the donor was only available after July 31st. You can imagine the stress and frenzy we went through trying to understand the next steps and what that would mean for Ariana. We were really taken aback and tried to just understand what this new process would look like.

Ariana's next step forward is to use a haploid donor - her father, Patrick. The number one type of transplant still currently used in a lot of places is using an unrelated donor, if there is not an eligible sibling. However, through recent years, especially after COVID, more and more haploid donors are being used since they are more readily available and willing to donate and studies are showing that their outcomes and prognosis are not statistically different to using a unrelated donor. This has created a new opportunity for Ariana, however, as I stated this isn't the case for everyone and an unrelated donor is still needed for others. Please still sign up for the donor registry!

On June 27, 2025, Patrick was able to complete his physical and remaining bloodwork to clear him for donation. We got word on July 3rd that everything looked great and that they will move forward with him being her donor.

The first day of being home again is strange for me. Patrick had to reluctantly go back to work and has been staying at home and visiting in the hospital on the weekends. Ariana and I have still spent more days in the hospital vs being in our home. I actually struggled readjusting to home life because it didn't quite feel like home. We still have boxes to unpack from our move in March! I still am figuring out where things should be throughout the house. I made our hospital room homey and comfortable. We set routines in the room, and now it was back to "normal" which didn't feel normal at all. I can't exactly put into words how strange the feeling was, but I am happy to report that after about 2 days, I finally was settled in. Just a bit of Stockholm Syndrome, I guess.

Ariana on the other hand adapted so well. She was so excited to see Winston and Charlie again. She loves being able to walk freely around the house and play with all her toys that we don't have to worry about cleaning each time. Her appetite has returned too. Not quite back at where it was. She still is getting feeds through her NG tube, but she now gets an 8 hour break which is awesome for her. Freedom from the food pump is a godsend for a toddler who just wants to explore and run around.

Oh yeah, speaking of running...before we left the hospital Ariana had regained her full ability to walk on her own again! No hand holding and no more cart pushing. We were in awe to witness this milestone again. Truly beautiful. Though, it quickly had me realize that a hospital is not baby proofed (nor is our house completely). So as we prepare for our next hospital stay, there are a few things on my mind that we need to ensure she can explore her room freely without worry.

Anyways, this skill has only gotten more refined by being at home. She is starting to try and run around and is quick! It makes me so happy to see her like this at home. It is all that I envisioned when we bought this home, and though we had to wait a bit for this vision to be realized, I am so grateful that it is finally here.

It is starting to hit me that this time at home is our summer staycation. We had plans to venture and explore our new home city this summer, but instead we are cherishing movie nights on the couch, building lego sets together, picking peaches from our backyard tree, play dates with Lolli and Pop Pop (who so conveniently live only 15 minutes away!) and going on an imaginative adventures during story time all in our home. There's actually a lot of peace about it all. Centering us on what is important: our family and the time we have with each other.

We got to celebrate Patrick's and my birthdays out of the hospital, which was a huge blessing. My parents treated us to two days at the movies. We saw a double feature on Saturday and then one on Sunday. Patrick and I hadn't been on a date since this all unraveled, so we were really excited to get some time to ourselves. However, the best birthday gift was receiving the news that Ariana had successfully completed her induction cycle II chemotherapy and her results continued to be MRD negative and is considered to be in deep remission. This was the goal. This is what puts Ariana in the best possible position for her Bone Marrow Transplant (BMT) to be completely healed from this disease.

Ariana's second cycle of chemo concluded beautifully. No complications and no infections this time around. She really just thrived which just speaks to her strength and willfulness. Here is the updated list for her interventions that she has had to date (changes are bolded):

This concludes our time on the oncology floor. We have been blessed with meeting such an incredible staff while being on this journey. The oncology staff is top tier and we are so lucky that we will get to be with some of them when we admit next time to the Bone Marrow Transplant unit. Each and every person has made an impact in our lives. We weren't able to get pictures with every one, but these are some of Ariana's heroes:

Before leaving the hospital, I also got to do an exciting thing! I chopped off 14 inches of my hair and donated to someone in need of a hair wig due to their medical treatment. I was able to donate it in Ariana's name, which made the whole experience so special. I have donated my hair before in the past, but as you can imagine, this donation meant something different. To see you child lose their hair, a piece of their identity is heartbreaking. I am grateful that only Patrick and I will really be the only ones to feel the emotional hit from seeing her hair loss because of how young she is, but sadly this isn't the case for older patients undergoing therapy. My hair donation isn't much, but I am hopeful that it will bring a smile to someone's face.

I think I will make a separate post diving into more about the Bone Marrow Transplant (BMT). I was trying to write it all here, but the post was already getting kinda lengthy! We are so grateful that each of you are so invested in Ariana's journey and want to know the details. I think it truly helps understand something that felt like a thing you only see in movies, so I want to present the information in the best way I can.

We head back to the hospital to begin her BMT preparative regiment on July 8th. Leading up to that date, here is our prayer: