On the Oncology Floor

For myself, when I think of a hospital, I think of blank walls, tan accents, and a chill in the air. Cook Children's is different. The colors are a vibrant blue and green, and the inside is catered to children and their families with interactive decor and art created by children hung on the walls. It is truly special.

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.

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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!

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She loves her music!

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.

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

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Medical Interventions:
17 Chemotherapy Infusions
14 Oral Chemotherapy Doses
3 Lumbar Punctures (with Chemotherapy)
2 Bone Marrow Aspirations
4 NG Tube Placements
1 Central Line Placement
1 PICC Line Placement and Removal
1 Pericardial Drain Placement and Removal

Multiple new IV Placements, Echocardiograms, CT Scans, MRIs, and X Rays
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Blood Product Transfusions:
5 Red Blood Cells Transfusions
11 Platelet Transfusions
2 Pooled Cryoprecipitate Transfusion
1 Fresh Frozen Plasma Transfusion

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/

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Right now we are praying that Ariana's second round of chemotherapy continues to go well with no complications. We are praying for no infections and that her treatment results in remission and MRD negative status. We are also praying for the next steps which will include a bone marrow transplant. We will share more information on this very soon, but please be praying that God has all the stars aligned to find Ariana an exceptional donor and that we are able to proceed with the best possible transplant.