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:

We wanted to share our next step after this second cycle of chemo: Bone Marrow Transplant. About 3 weeks into the first cycle - about the same time she got really sick after her treatment - the oncologist told us that Ariana's genetic results showed that she has an exceptionally rare mutation. There's a lot of science speak about what this means, but in lay man's terms, KAT6A and NCOA2 are the genes that are affected which lead to the mutation causing Ariana's cells to not function properly.

Our cells each have a set of instructions—our DNA—that tells them how to function. Sometimes these instructions can get rearranged in a way that causes problems - like AML.

In our case, our gene mutation is KAT6A-NCOA2 fusion. This means that two genes—KAT6A and NCOA2—that normally do very different jobs, got accidentally put together in a way that they shouldn't be. Imagine you're cooking dinner and accidentally follow two recipes at once—half of one and half of another. You end up with something that doesn’t turn out right, even though both original recipes were fine on their own. Literally like Rachel from Friends making her dessert...

This genetic change likely helped trigger the leukemia by telling certain cells to grow and multiply when they shouldn’t have. It’s not something that was inherited or caused by anything we did—it’s just a rare event that happened by chance. Wild.

Due to Ariana's rare mutation, there is very limited data. However, our care team did say that it has been shown to act similarly to a different gene mutation that would put her in the High Risk category. Now, risk in this context is referring to a higher likelihood of chemotherapy resistance, relapse and just overall poor long-term outcomes. We aren't sure exactly which of these apply in Ariana's case since the research around her mutation is so limited, however, we are taking the most conservative route to ensure that Ariana has the best possible outcome.

With this high risk designation, it pretty much put us on the route to bone marrow transplant. This treatment is recommended for those like Ariana in the high risk bucket because during a bone marrow transplant all of her blood forming stem cells are destroyed to make room for the healthy transplant cells. This is done by more chemotherapy and sometimes radiation. As I'm writing this, we are still waiting on the specifics for Ariana's transplant plan. We do know that our best option is to have an allogenic bone marrow transplant that has the best probable outcome for a cure.

We have partnered with Earl Young's Team and the DKMS registry to host a virtual swab drive. We are asking all of our friends and family and all of their friends and family between the ages 18-55 to order a kit, swab at home AND, most importantly, send back their swab kit to be added to the donor registry. If you aren't able to be registered, please encourage a friend who is in your place!

We are calling on you all to support Ariana and many others with these undeserved diseases to have a second chance at life! It is a selfless act, but without this treatment, we very well may not have as much time as we potentially do with our little girl. And we are just one family that is feeling the sting of this reality.

You have the power to save a life — maybe even be someone’s only hope. Join the bone marrow donor registry and give patients, like Ariana, battling blood cancers and other life-threatening diseases a second chance. As the video described, the registration process is easy. You get your kit, swab your cheek and mail it back! Simple! It takes just a few minutes to sign up, but it could mean a lifetime for someone else.

Here is a video breaking down the Bone Marrow Transplant process (Please do not use the Be the Match link at the end of the video it directs people to a different donor center that only registers those who are 18-40 year olds where DKMS opens this range to 55 years which means more potential donors to help others!):

Thank you for staying #StarStrong for Ariana.

The oncology floor of the specialty center operates very similarly to the oncology floor of the hospital. Every patient and staff member there knows and understands the protocol: keep distance for others, respect others' belongings, and wear masks in the waiting room. Being home we got a small taste of what outside life looked like. We still took many precautions, so it was nice to be back in a place where those precautions were the "normal". Such an odd thing to come to terms with: Ariana is now, and for the foreseeable future, immunocompromised.

Luckily the labs we got done in clinic came back pretty quick and we were allowed to be re-admitted to continue her treatment plan. We were so excited to be welcomed back into our room that we had during round 1 which is one of the nicer/bigger rooms with 3 windows. Very grateful that we could bring Ariana back to a familiar space.

Treatment started that very day. It took a bit of time to be readmitted, settle into the room, receive doctor's orders - so we didn't start her chemotherapy until about 5 pm. I was a bit bummed that it was so late in the day, because this would set the cadence for the next day's medication schedule.

Our spirits were greatly uplifted when we were paired with one of our favorite night shift nurses! She had us a few times during our first stay and so it was nice to have someone to welcome us back that we had such great rapport with. Every staff member that we have encountered here has truly made a difference. We can't thank them enough!

Ariana's treatment plan this go around was similar to her cycle 1, but with some different medications. She received two IV chemo medications and one oral chemo medication on days 1 and 2, followed by three IV chemo medications and one chemo medication on days 3-5, and ended with the remaining 9 days on the oral chemo medication. 14 days total of chemotherapy.

Ariana struggled tremendously with nausea this cycle. She was vomiting almost every other day at night while on our treatment. It was extremely difficult to go through and see her struggle. During one of her episodes of throwing up, she ended up throwing up her intranasal feeding tube which resulted us in having to remove it and placing a new one. It was not fun. Thankfully, the doctors put her on anti nausea meds which helped the intensity of the vomiting until it eventually subsided.

We were extremely blessed to have such minimal side effects during her treatment. She lost the majority of her hair during round one and her hair thinned more this cycle, but not as many clumps of hair like before. I honestly didn't notice it this round, but looking at the pictures again from the beginning of this cycle to now, it is noticeable. This all being said, she still has a little bit of hair on her head. I tried to save every strand I found in a keepsake.

After the leaving the PICU that very first week after diagnosis, her skills regressed a lot. She didn't speak too much, wasn't signing, and didn't want to walk/crawl/stand up. When we went home we saw a significant return of her skills, which we were so grateful for. A lot of families of littles that we have graciously been able to connect with talks about reliving your child's "Firsts" - first words, first crawl, first stand, first steps, etc. I remember the joy we felt when she achieved all these milestones for the first time, before cancer. However, nothing will compare to seeing her accomplish these milestones again for the first time after this grueling treatment. That same joyous feeling, amplified with gratefulness and relief.

Ariana now is talking more than ever and I feel like she learns a new word or small phrase daily. She can crawl and stand again without assistance. We are still working on her walking skill. She can walk assisted with her push cart and by holding someone's hands pretty consistently. She is still building her confidence for solo walking, but has taken some steps by herself when she's REALLY motivated!

We are currently on Day 25 (June 14, 2025) and Ariana is doing really well. Her energy levels remain high and she wants to explore every inch of this hospital. We love seeing her staying so strong and happy after seeing her go through the thick of it during her first round. She has also put back on her weight, and she is now back in the 90th percentile (which is where she was prior to diagnosis) and seems to be getting taller each week. Cancer tried to stop this little girl, but she is persevering and is thriving. We are in awe of God's work on Ariana and are grateful for his presence in our lives each day. He is working miracles and we continue to find comfort in strength through Him.

As of today, we are still waiting for her counts to recover. This means that her body is still trying to get back on track and make her own white blood cells, red blood cells and platelets. Her platelets are increasing, which one of the doctors explained is the first component to typically increase during this period. We remain hopeful that her other counts will soon follow. We are so grateful for every family member and friend who has shown up both of these rounds to show her some love and support. Whether virtually, through letters or in person: every interaction uplifts us and we just love the time spent with the people we love. Thank you every one!

Totals (as of today) from both cycles 1 and 2:

As I stated previously, Ariana and many others rely on donated blood products every day to survive. We encourage everyone to donate when they can and if they are healthy to do so. To find more information about local blood drives and places where you can donate platelets, please visit https://www.aabb.org/for-donors-patients/give-blood and https://www.bloodcenter.org/donate/donating-options/platelets/

We had two hiccups being home which prompted us to call the after hours line. The first happened on the first night. Since Ariana had a lumbar puncture and bone marrow aspiration for cycle 1 completed the same day we were discharged, she still had her bandage on her lower back. Well, in true Ariana fashion, at around 2AM she made a HUGE diaper and it blew out up her back all over her bandage. Of course it was crucial to keep her wound clean, so we reached out to see how the doctor would recommend us to clean it. It took a bit for us to hear back from them so we took matters in our own hands and started to clean the area as we saw fit and how we had seen nurses do it in the hospital. Thankfully upon further inspection, we saw that the actual puncture sites were completely clean with no poop on it. We simply cleaned the dirty areas and put a fresh bandaged on and got her back to sleep.

The second hiccup was on the second night. As part of Ariana's home care that we were trained on, we had to flush both of her central line lumens with heparin every 24 hours. Since the staff performed this before we were discharged, night two was the first instance that we had to do it on our own. It's a whole procedure, but pretty straight forward. Here is a video of what we were instructed to do:

This video mostly demonstrates what we were doing at home, except for two things: we had to clean the blue cap with the wipe for 30 seconds and then wait for 30 seconds to let it dry AND we all had to wear masks while performing this task. Now a minute isn't a long time, but it is a long time when you are wrestling your 18 month old and holding her hands down so she doesn't touch the clean caps all while trying to keep her mask on! Lots and lots of flailing around - not like the very well behaved dummy in the video. Anyways...the hiccup happened when we tried to flush her white lumen. Patrick had tried first and was met with some resistance so we stopped and decided to try again with a different heparin syringe. I tried it this time. This time it was flowing smoothly, but at the end of the flush I noticed tiny air bubbles in the line. Instant panic! They did not go over this in the training, so we called the on call staff again.

The staff reassured us that they weren't overly concerned and that we could wait until the morning to come into clinic to be seen. In the same breath, they said that if it would give us peace of mind that we could go into the ER and have them take a look since there is no way for them to do a evaluation over the phone. So, off to the ER we went. One of the big reasons why we felt comfortable going home was knowing that we lived so close to a Cook Children's hospital - 10 minutes to be exact. We packed up our things and loaded Ariana in the car and went to the ER.

Since Ariana is an oncology patient, she gets special instructions when visiting a Cook Children's ER: don't go through the ER waiting room, go through the ambulance bay instead. This is primarily to avoid the crowds of people that are normally waiting so that we can avoid exposure to illness. We pulled into the bay and were let in and led to a nearby room. Thankfully, the ER was not busy and we were seen pretty quickly. They removed the air from the line, but struggled to get blood return from it after. This is an indicator that they use to determine how well the line is functioning and no blood return is not ideal. We had to explain to them that it wasn't the first time that this lumen has given trouble, even at the hospital, and that we should try remedies taken previously during our admission. Luckily, Cook Children's is phenomenal at listening to parents and took our advice and repeated what had been previously done. Unfortunately, the medication used to help took a long time to be received from pharmacy and then we had to wait an additional hour and a half for it to take effect in the line. We stayed at the ER for about 4 hours. It was a long night, but I am glad we went and were able to rest easy once we got home.

The rest of our stay at home was filled with cuddles, walking exercises, drive way visits from family and friends and just overall healing. Ariana had regressed in her language and motor skills while in the hospital and by day 3 of being home, she was talking like she had been before her diagnosis and was walking again with assistance. We were so incredibly proud of her. She loved being able to see Winston and Charlie again. They were her biggest motivation to walk - just to blow kisses to them. Patrick and I enjoyed being home too. It was nice to be able to spend time in our home, sleep in our own bed and love on the puppies. We binged The Pitt every night (highly recommend) and rested easy to prepare for our next stay.

OH! I almost forgot...we had a third hiccup while at home. Not cancer related at all. We survived our first tornado warning on May 18th. We got some weather notifications around 8 PM to be on the look out for severe weather. I started charging my phone and made sure we had the weather radio on. I was in our bedroom around 10 PM putting up some laundry when the sirens went off! It was exactly like what you heard in Twister (if you know me, you know that the 1996 Twister movie is my favorite movie (Twisters was really good too!!!) but I never wanted to experience it in real life). Anyways, every one kicked into go mode. I got Ariana - unhooked her from her feeding pump and IV pole. Patrick got the dogs. My parents got two big cushions from our couch and we all bunkered down in our master closet. We had the weather radio on as well and found some news stations on our phones and just waited. Luckily the warning only lasted about 15 minutes and everything ended up being completely fine. We were so grateful that the sirens near our house were operational and that everyone knew what we needed to do.

My best friend, Krystyn, told me when we moved to Dallas that we were moving to Oklahoma. I texted her while this was happening and she replied with "Oklahoma will Oklahoma", and as much as I despise being told we live in "Oklahoma", she may be right.

As you can imagine the PICU was a space curated for the most critical patients. No frills, just a space created to ensure the top most care. When we made it to the oncology floor, it was warm and welcoming. Families were in the hallway and a sweet young girl was running the hallways in a walker. She had a beaming smile on her face that lit up the whole floor and her laugh was infectious as she raced down the hall. Come to find out that this little girl (just at about 2 years old) was also battling AML. She was at the end of her treatment and was on track to ring the bell to leave! We thought to ourselves, "What a welcome party!" It was so joyous to see this child thriving after an incredible journey of treatment. It truly was the most special sight.

We made it to our room. It had windows overlooking the front of the hospital, a cabinet for our things, a private bathroom and a couch that doubled as a bed. It was definitely an upgrade from PICU living. This was it. This was going to be our home for the next 3 weeks or so.

Ariana's stay started off really good. We got settled in and organized as best as possible. She was still receiving chemotherapy at least once a day - and the more her body was taking on chemo, the weaker her immune system was getting.

I forgot to mention in the previous post, but during the same lumbar puncture procedure, the team also removed her PICC line and placed a Central Line. This would be her more permanent line to receive medication throughout treatment.

Ariana got 14 total days of chemo during her induction cycle. She received an oral chemo medication and several chemotherapies that were administered through her central line. She got half of this treatment while still in the PICU, and the second half while on the oncology floor.

Being on the oncology floor had a lot more freedom than in the PICU. She was able to leave her room and play on the play mat in her room, but she wasn't totally up to it. She was pretty tired most days and struggled a lot with weaning from the PICU sedation medications. It was very difficult to see our baby go through withdrawal symptoms. The scratching, the eye rubbing, the irritability - it was incomprehensible. With some small tweaks to her medication schedule we finally were able to manage her withdrawal symptoms and were able to completely wean her from her sedation meds, but it took a lot longer than anticipated.

Unfortunately, the first round did not let up and Ariana started to fever on her last day of chemo. Typically when one has a fever, it is combated with at home things and the Tylenol/Motrin rotation. Well, for someone like Ariana, who now had absolutely no immune system, a fever is not taken lightly. The fever triggered Ariana to be closely monitored, and each day we prayed that she would not have to be sent back to the PICU.

Ariana got a baseline blood culture completed and was also tested for C. Diff Infection. She had been having bad diarrhea for one day and then was profusely vomiting for almost all of the next day following the diarrhea. The C. Diff diagnosis came first. It was a straight forward stool sample lab that they could do on the floor and we got the results quickly. The blood cultures could take up to 24 hours for an initial reading.

C. Diff (Clostridioides difficile) is an opportunistic bacterial infection. Meaning, the bacterial takes the opportunity to essentially take over in a weakened immune system. Ariana was more susceptible to this because in preparation for her chemotherapy she was given a lot of antibiotics to help protect her from infections while her body didn't have a strong immune system. She was on pretty broad antibiotics which unfortunately also affected the good bacteria in her gut. Take the weakened immune system and the low amount of good bacteria and the C. Diff took over.

It was insane to see Ariana get as sick as she did. The girl had been so healthy - was only sick once with COVID this year with no other prior illnesses. Going from seeing her be so healthy to seeing her throw up multiple times, fevering, being on total IV nutrition because her digestive system shut down to protect itself was mind boggling. With Ariana having a fever, she was put in isolation and was not able to leave the room. Staff had to wear personal protective equipment which made Ariana extremely uneasy since she couldn't see their clothes and their faces were behind a face mask. It was a really difficult time.

The blood cultures came back with results too. We got the first result the day after the blood culture was taken that showed that she had a blood infection from her central line. We were really scared for what this could mean, but the doctors explained that this again was par for the course and that the bacteria took advantage of the situation. Every day the same initial blood culture would be analyzed to see if any new bacteria growth occurred. We learned about one infection, and then a few days later we were told that she had two other blood infections, and then a couple more days later we found out she had another. In total: 4 blood infections on top of C. Diff.

All of this led to a visit from infectious diseases. I got to meet with Dr. C and she was top tier. She explained everything to me and reassured me that they were giving very specific antibiotics to treat Ariana to target the specific bacteria that she was infected with. I will say it was very strange answering questions like, "Have you been out of the country in the last two weeks?", "Have you been exposed to these various diseases?", "Where do you live?", "Does Ariana stay home or go out in large crowded areas?", "Is your water at home city or well water?", "Has she had any exposure to exotic animals?". It gave COVID-19 vibes for sure.

We were grateful that the infections were caught so early because she started antibiotic treatment quickly. Her subsequent blood cultures after the initial one all came back negative, which was very positive. That meant the antibiotics worked quickly to resolve the infections, but she was still hit very hard. These blood infections are very difficult to avoid in immunocompromised patients. Most of the time, just like in our case, it's bacteria that is naturally occurring on our skin or surfaces which to someone with a functioning immune system would be no harm, but that wasn't the case for Ariana and it really took its toll.

We had a couple of scares during these illnesses. Around day 5 of her being sick, she needed to be seen by a PICU nurse because her fluid balances were not in a great spot. We got visits from them for about 4 nights until we got the all clear that she was becoming more stable. Ariana was also in extreme pain during this time. She would wake up screaming, stiffing her body and just cry through her teeth. It came in waves which told us that she was experiencing stomach cramps, probably from the C. Diff infection. It got so bad that the doctors recommended putting her on continuous pain medication (kind of like being on an epidural but it was through an IV not a spinal placement). She started on Morphine but we found out pretty quickly that she had what we are thinking an allergy to it, so we had to switch her over to Dilaudid. Thankfully, after managing her pain things started to improve and she was able to sleep better. She stayed on these pain meds for almost the entire time she was sick.

If you recall, we were meant to redo her lumbar puncture to see if her first intrathecal chemotherapy was successful in showing no signs of leukemia in her spinal fluid one week after we left the PICU. Unfortunately, we had to postpone this procedure because Ariana was not healthy enough to undergo the procedure. We had to wait two weeks plus one day to repeat the lumbar procedure. Luckily, this time there was no introduction of blood in the sample and the results clearly showed no Leukemia found in her spinal fluid!!

We came to the oncology floor on April 18th, Ariana tested positive for C. Diff and blood infections on April 24th, and we finally got out of isolation and were infection free on May 5th. It was a long 11 days of fighting these infections, but she pulled through and we are so grateful.

Thank you all for your prayers and thoughts that carried her (and us) through!

We were told on May 9th that we were on track to have a bone marrow aspiration and a lumbar puncture to get her final numbers on how "well" she responded to her induction cycle of treatment. We were also told that we could go home after the procedure for a whole week! We were so shocked...and scared!! Thankfully, the hospital has a patient educator that walked through how to set up her feeds, how to flush her central line, how to change her central line dressing (if needed), and how to change the caps on her central line (if needed) too. It was a lot to learn, but we were grateful to have the opportunity to spend time at home.

Before we left, we started manifesting the results from her procedures: NO MORE LEUKEMIA. That Thursday, May 15, we got the wonderful news that she was in remission AND she was Minimal Residual Disease (MRD) Negative! It was the best Mother's Day gift I could have received.

Here is a summary of Ariana's treatment and interventions so far (April 11 - May 12, 2025):

As I stated previously, Ariana and many others rely on donated blood products every day to survive. We encourage everyone to donate when they can and if they are healthy to do so. To find more information about local blood drives and places where you can donate platelets, please visit https://www.aabb.org/for-donors-patients/give-blood and https://www.bloodcenter.org/donate/donating-options/platelets/

We have created an Amazon Wish List of items that can help both Ariana and ourselves as we continue with Ariana's AML Leukemia treatment plan in the hospital over the next few months.

I do want to stress that donating is of course entirely optional. We have all been going through a troubling economy with rising prices and cost of living, and please only consider donating to us if you are in a comfortable financial position.

Thank you. 🙏🏼

Ariana’s Hospital Wish List | Amazon Gift List

This is a bigger chunk of time than the last posts. but just trying to catch you guys up as we plan for our second month long stay in the hospital. So just jumping back in right where we left off.

After meeting with Dr. M to consent with treatment, we met Ariana in her PICU room. At this point it was around 8PM, 18 hours after learning she has AML Leukemia. Ariana was still intubated and it was very surreal seeing her. You just never can prepare yourself to see your baby hooked up to a breathing machine, with a PICC line and multiple IV pumps hooked up so that she can get the care she needs. The doctors were also trying to determine when to take Ariana off her intubation tube. Overall, she was stable. They primarily were looking at her oxygen levels and comparing it to how much the breathing machine was helping her. It took a long time to wean her off the machine. There are probably a lot of reasons why, but ultimately, we think it was mainly her lungs readjusting.

If you remember, when she had the fluid around her heart, the fluid was taking up so much space that it was impeding on her lung capacity. Like any muscle, the lungs needed time to readjust to their new capacity after being compressed for so long.

At around the same time of them weaning her from the breathing machine, they were also weaning her from her sedation meds. Throughout the weaning process we got to see her more awake on and off. But only for a few seconds at a time she would flutter her eyes open.

I can't remember the exact time but it was pretty late when they decided that her numbers were looking good enough to extubate her. The extubation went well, however, this little girl was NOT HAPPY. I mean, who would be with a tube down their throat? She was very scared, confused and probably in some discomfort. It hurt our hearts seeing her in this state, we couldn't comfort her too much since she had the drain in her chest and was still hooked up to a lot of medication.

Because she was in this state of not being able to be comforted, she got really worked up and, unfortunately, that is not conducive to having good breath work. Her oxygen stats started to drop and they decided to put her on a nasal cannula that would provide more oxygen.

Ariana is a STRONG girl. And though this characteristic has taken her far in this journey, it was not serving her during this time. She fought every measure. She didn't want the nasal cannula, she didn't want to be still, she wasn't comfortable and would fight the staff. Over the course of the week in the PICU Ariana got a reputation from the staff. She was called, "Spicy", "Strong as an Ox", "Spunky", and "Smart". We thought it was so funny that our little fighter was already showing her spirit. She would need it. Unfortunately though, because of her being in this constant state of her stats not recovering, the doctors decided that they had to re-intubate her so she could get the oxygen she needed.

At this time it had to have been around 2AM, a full 24 hours after diagnosis, and it felt like we were moving backwards. Ariana was re-intubated and put back on sedation meds for the next 6 days.

We had stayed in the PICU until April 18th, the entire time she was intubated and sedated. During this time, she had also started chemotherapy. The first three days included the trial drug and then on Monday, April 14th, we started the standard chemotherapy plan for AML.

Thinking back on it, I believe it was a blessing that she was able to rest so much during this week of chemotherapy. She was also monitored so closely by the doctors and nursing staff since we were in the PICU. Every day we got to talk to the PICU doctors and staff. We also got to speak with our oncologists.

They would do labs every day to monitor her condition. We would also get updates on her complete blood counts (CBCs).These blood tests were critical because they told us so much about how Ariana's body was doing with treatment. Most chemotherapy is not cell type specific, meaning, it kills all cells, the good and the bad. Combine this with Ariana's Leukemia (cancer that affects the blood cell components - primarily platelets, White Blood Cells (WBCs), and Red Blood Cells (RBCs)), and you have a depleted state. The daily blood tests gave us information to tell us if Ariana needed to be transfused with any blood products.

We were also given some insight to see how Ariana was responding to treatment. A few days into treatment her WBCs started to decrease, until there was an undetectable amount. This took a few days to achieve, but we were encouraged by how quickly her body was responding.

Ariana faced multiple challenges while in the PICU, including:

1. A clogged feeding tube (nasal-gastro) used to give her feeds and to administer oral medications. This required her getting a new one.
2. Breathing difficulties when trying to wean her from the breathing machine - Since it was taking a bit longer to wean Ariana from the breathing machine, we would see a Respiratory Therapist every four hours to conduct breathing treatments. The treatments helped and eventually they felt more confident to take more steps. This led to us being referred to an Ear, Nose, and Throat (ENT) Doc . The ENT recommended that we perform a Laryngoscopy and a Bronchoscopy to see if there was anything anatomical going on that was preventing her to wean off the breathing machine. They wanted to also attempt to remove the intubation tube with the ENT under anesthesia during this procedure. This would allow them to be in a controlled environment in case she could not tolerate being off the breathing machine. Thankfully everything went well and she was able to be successfully extubated. It was discovered that she has Tracheobronchomalacia - weak and floppy trachea and bronchi. The doctors said that it was congenital and we probably would have never known about her condition unless we did this scope. Since she didn't have any symptoms prior, it is more than likely a mild case and shouldn't affect her too much in life. The scope also determined that her vocal cords were very inflamed after the intubation. Thankfully, she was going to be able to get lots of rest and it would help her recover.

3. Swelling - Ariana came into the ER with swollen eyelids and over time her body accumulated more fluid. We played a long game of balancing her fluids and electrolytes. Finally, by the last day in the PICU her swelling was mostly gone and her input and output was negative, which was what we were trying to achieve.
4. First Lumbar Puncture with Chemotherapy: Taking advantage of the time she was under anesthesia for her scope, the team also decided that it would be a good time t0 perform her first lumbar puncture with chemotherapy. This test was required to see if there was any Leukemia found in her Spinal Fluid. It's crazy to think that we would have to be concerned with this area, but our oncologist explained that the spinal fluid is actually a place where Leukemia cells can "hide". They perform the lumbar puncture to obtain the spinal fluid sample and then also replace the lost volume with a chemotherapy drug. During her procedure, we were told that a small complication did occur where a small artery was nicked during the puncture. This was called a "traumatic lumbar puncture". This complication can make the results of the test difficult to interpret since peripheral blood is introduced in the spinal fluid sample. In our case, since we knew Leukemia was found in her blood samples, it would be difficult to know if the spinal fluid sample that was collected would show Leukemia cells from her spinal fluid or if it was from the blood. We found out that the sample did show one Leukemia cell and this was why we introduced the chemotherapy. We would repeat the lumbar puncture in one week.

The breathing difficulties really took priority while in the PICU, but we also had big successes while being there.

1. Pericardial Effusion Resolution: The cardiology team kept her pericardial drain in over the weekend and watched for output. By Tuesday after the procedure, the output had slowed down and the team decided that it would be a good day to clamp the drain and perform an echocardiogram to look at the fluid around her heart and overall heart function. The echo came back with great news and showed no fluid around her heart. They decided to leave it clamped for one more day and repeat the echo. By the grace of God, the last echo came back completely normal and still showed no fluid around her heart! The heart drain was removed, at bedside, on Thursday (about 6 days after it being placed).
2. Leukemia Counts: Ariana's blood counts were promising throughout our treatment. She was responding good to the chemo and her counts were decreasing as expected. She achieved no detectable WBCs by the 3rd day of treatment and we just continued to pray that she would head on that trajectory. The definitive tests wouldn't be performed until we had a bone marrow aspirate, but we were encouraged by the blood sample.

We were extremely blessed with every single one of the staff that we encountered in the PICU. Each one cared for Ariana, and even Patrick and myself, with such confidence, grace and understanding. We got to share our story with each one of them and told them just how much we believed that God brought us here to be with them for Ariana's journey. We are so grateful to every single person we met in the PICU for supporting us and for helping heal Ariana out of her critical state.

Every day in the PICU we were praying for the day we would be told that we would make it up to the oncology floor. We were lucky enough to meet some of the oncology nurses while in the PICU since they would come down to administer her chemotherapy, and we just knew that they were a special bunch. Finally on April 18, 2025, we were told that she would be moving up to the oncology floor to complete her induction cycle treatment!