Superheroes

Skyla was ready to enter the world in May of 2017 in Western Pennsylvania! She came early and fast, we barely made it to the hospital. But we made it, and a healthy and happy little girl, who was already curious about the world around her, was ready to go home. From the first moment of Skyla’s big brother talking to her and learning how to play with her they were inseparable.

The first sign of something wasn’t 100% healthy was at Skyla’s 2.5 year well visit with her pediatrician. Her iron was little low. We were told for not to worry, change her multi-vitamin with iron.

Then, March of 2020 hit. Like the rest of the world, we stayed at home. Using couches and chairs as jungle gyms to burn off as much energy as this very active little girl needed. In May, of 2020 was Skyla’s 3rd birthday. Her pediatrician office wanted to push off her 3rd year well visit because of COVID. We were concerned about her low iron. She also started to have a lot of small bruises on her legs. We wanted to show the doctor but we still didn’t think anything about the bruises since she has been running around the house and climbing on anything and everything. This was enough to allow Skyla to have an in-person appointment. Her pediatrician ordered blood work but thought it might be a food allergy.

She wasn’t able to go in for blood work until June 12, 2020 because of Covid rules. We received a phone call from her pediatrician on Saturday, June 13, explaining her platelets were extremely low and he set up an appointment for her at Children’s Hospital in Pittsburgh with the Hematology Department for the following Monday. At this point, Chris and I were nervous and confused. We didn’t know enough information to be able to ask the right questions. We didn’t understand since we saw a very active little girl, who is happy, smiling, and laughing with her brother.

Skyla was scheduled for a biopsy of her bone marrow later that week. From here on decisions were fast but results were slow. The waiting game was going to be something we were going to have to accept no matter how scared we are.

She was diagnosed with Myelodysplastic Syndrome the following week. Myelodysplastic Syndrome is when blood cells in the bone marrow never become healthy. The easiest way it was explained to us was, the cells are like plastic, with no information in them. Skyla would require a bone marrow transplant at the age of 3. The search for a donor to match Skyla began. We found out that Chris or I could not be donors because she was half of each of us. Her big brother was tested but the result came back negative for a match. The hospital turned to the donor list at bethematch.org.

Skyla was a difficult match but eventually found a donor in Europe. The donor was not a perfect match but it was the best she was going to get. And we had to move forward. Through these 8 weeks of searching for a match, Skyla went into Children’s Hospital for 3 times a week blood level checks. Skyla was extremely co-operative during the blood checks. She was curious with the nurses and asked her questions. This was quickly becoming her routine. Skyla was still jumping around and smiling throughout her day.

At the end of August 2020, Skyla was admitted to Children’s Hospital for chemotherapy and a bone marrow transplant. Chris and I knew it was going to be beyond difficult but what was even more gut wrenching was we were at the height of Covid. And no visitors were allowed. Skyla and her brother were going to be separated for months. We did our best to Face Time and send videos but for either kid it wasn’t the same. Both were in pain without the other.

When Skyla was admitted into the hospital, she was 15 days out from her bone marrow transplant. She had surgery to have two broviac central lines put in. She went through an intense treatment plan of chemo. Skyla received a year of chemo treatment in less than 2 weeks. Here, Skyla declined dramatically. Chemotherapy was hard. Skyla was sick all the time. She didn’t have the energy to stand and sitting up was quickly becoming difficult for her. Daniel Tiger was her happy space. She would watch it till she fell asleep and ask for it when she was awake. Chemo was taking over her body, preparing for the transplant. But still Skyla was co- operative and allowed the nurses to do their jobs. Skyla had many different chemotherapies but there is one type of chemotherapy called Thiotepa. This burns the skin. To help ease permeant damage from the burns Skyla needed a bath every few hours. The nurses even woke her up in the middle of the night to bathe. Through all of chemo Skyla did not complain.

September 15, 2020, Transplant Day had arrived. The transplant took place in her hospital room. Chris and I were with her. There were about 15 other people in her room that day, Doctors, Nurses, and the Steam Cell team. The donor cells went through her tube and the cells found their way to her bone marrow. Here Skyla was starting to show strong signs of frustration with everything in the hospital. She was missing home. We did our best to fill her days with play doh, music, stickers, and painting.

By late-October we finally noticed a positive change in Skyla. She had energy to sit up and was ready to play, wanting to Face Time with her brother more often and for longer periods. She was able to walk around the room. Skyla was ready to play as long as you didn’t come into room with any medical needs.

By Halloween, we were told her newest biopsy results were in. There was no trace of the MDS in her bone marrow! Skyla was released from the hospital and was going home to her brother. So, she put on her Daniel Tiger costume and walked out.

Being at home caused new stressors. She found her voice in the hospital. Getting her to take her medicine multiple times a day or attaching her IV at night was a battle Chris and I never wanted to experience. Big brother came to the rescue. He would come up with games to help her take her medicine or would set up an IV on his bears so she would feel better. Skyla was regaining strength and endurance quickly by being with her brother.

It was soon discovered that the donor cells were not taking over Skyla’s body as they should. Each test there were less and less doner cells in her system. Skyla was lucky that the donor’s hospital, in Europe, sent over a large volume of donor cells. This meant after her transplant there were still multiple bags of the donor cells. She would routinely get “boosts”, mini transplants, until she was out of the bags of donor cells. These were long days in the hospital, but she was able to come home every time a boost was performed. In the end, she received six boosts of donor cells over the next two years.

Throughout 2021, her blood level numbers became stronger. For her 4th birthday was cleared to have a small group of masked adults outside to celebrate her birthday. By this time her doctor appointments were down to once a week. Her tubes have been removed. Taking medicine was becoming easier. And the nightly IVs were complete. Her hair was growing back. The world had moved forward from COVID and Skyla was looking and feeling healthier, but she still needed to be separated. Her immune system was still lower than other kids her age. We tried to do as many outdoor activities with the kids that we could, safely for her.

By 2023, her donor cells are still declining with every check. But, Skyla refuses to let that slow her down. She is making friends in school that she attends in person, involved in activities like dance and swimming, still playing hide and seek with big brother and enjoying life. Like a happy smiling 6 year old should be!

We are very grateful for all of the hard work the doctors, nurses, and staff do at Children’s Hospital of Pittsburgh.

There are so many ways you can help Skyla and so many kids like her. By, donating whole blood, platelets and most importantly bone marrow. Please check out bethematch.org.

We are humbled by all of the people that have helped Skyla in more ways than we can count.

Thank you to Kids on Carousels for allowing us to share my superhero, Skyla Patora’s story as she continues to fight every day to be a healthy kid.

Michelle and Chris