Isaac entered this world very quickly - I was checked into the hospital for less than two hours before he was born. But the moment he arrived, I knew deep down in my gut that something was “wrong.” He was born at the exact same gestational age as his older sister, but was a full 2 pounds less, and I could physically see how small he was before they told me his weight. I was expecting him to be a lot bigger due to me having gestational diabetes.
He was weighed and measured as usual, but then the oxygen mask came out and the monitors stuck onto his chest. This was nothing like my previous child. I’m not even sure how much time went by before our doctor announced he called our sister hospital from a town 2 hours away to send the helicopter - Isaac was going to need NICU time. Our doctor mentioned things that could be a possibility of what was going on - but then he also mentioned the two scariest words at the time: Down syndrome.
I was lucky. My doctor discharged me mere hours after giving birth, trusting me to know if something was wrong with my own body during my postpartum days since this wasn’t my first child. He knew I would be in a hospital with medical professionals if I needed them, but he wanted me to be able to follow my baby to the NICU.
It was confirmed within the week that Isaac had Down syndrome - the most common type, Trisomy 21.
Isaac spent 28 days in the NICU, learning to breathe on his own, take bottles, and gain some weight. During this month, we also learned that nearly 50% of babies born with Down syndrome also have a heart defect, and Isaac was no exception. He was diagnosed with a defect called Complete AV Canal. Our cardiologist told us he expected Isaac would need open heart surgery within the first 6 months of life, but we would have regular checkups to help determine the time frame.
With every new echocardiogram, the timeline for surgery was delayed because there were no changes in the holes in his heart, and Isaac wasn’t showing major signs of heart failure. The final timeline given to us was “before 2.” Right around Isaacs first birthday I was noticing signs of his heart declining - I scheduled an earlier checkup. At this appointment it was determined surgery was in the near future.
On October 13, 2021 - at 14 months old - Isaac went into the OR and finally had his heart mended. It was amazing to see how fast recovery was for something so major, and on such a young person. Physical therapy had him sitting up with help less than 24 hours after the start of surgery. He was back to drinking milk and eating table food just 2 days later. Day by day, wires, needles, medications and monitors were being taken away. The end was near and we couldn’t wait to get home and back to a normal life again!
On day 6, our world changed again. On the day that was supposed to be deemed our release date, a new doctor we had never seen before came in and introduced himself as someone from the oncology/hematology department. My mind went blank and couldn’t recall how that fit into the cardiology world, even though I knew it didn’t.
This new doctor said he was worried about Isaac’s blood draws throughout the week, stating the extremely low platelet levels were something to be concerned about, and that they kept lowering day by day. Now - he explained this could be from the stress of just going through open heart surgery, just getting over RSV the month before, and also having an ear infection - but it could also be the big bad C word - cancer.
We signed permission for them to do a bone marrow biopsy the very next day, and we were transferred to a new floor of the hospital.
After his biopsy, the person performing this told us he did well, but that the aspirate sample was impossible to get, which probably meant cancer was inevitable. I truly hated that person on the spot - telling us something they couldn’t know for sure without the results. I didn’t care what the experience level or degree was and how many cases they’ve seen - this wasn’t going to be the case for Isaac.
The initial 24 hour results came back negative for cancer blasts and we were sent home. Finally, this whole ordeal was done and I just wanted to act like a child and stick my tongue out at the doctors who scared us, saying “told you so!”
Not even 3 weeks later, however, I got a call from the hospital. Unbeknownst to us, his bone marrow sample was sent off for further testing at the chromosome level, and it came back positive for showing signs of pre-leukemia, also known as MDS. It was caught early, and it hadn’t formed fully, but it was inevitable that in only a matter of time, it would become AML.
Less than 24 hours after this phone call, we were checking into yet another hospital. We chose the one closest to home that had a pediatric cancer unit, but even then it was still 2 hours from home. In less than 5 days time from admission, Isaac underwent another echo to make sure his heart was up to chemo, multiple X-rays, surgery to get a central line placed for chemo, and a multitude of other tests and blood draws. Isaac’s first dose of chemo was given, and a whole new adventure began.
Each session was going to consist of approximately 4 weeks - the first week is for chemo administration, second week would consist of the chemo taking effect and making a bunch of blood count numbers drop and give him essentially no immune system whatsoever, third week would be Isaac sitting at no immune system, and forth week would be his immune system kicking back in and allowing the chemo to work.
During these sessions, he also needed multiple blood and/or platelet transfusions. His appetite tanked where we were force feeding him 2 bites of mashed potatoes to have a good day of eating. He stopped drinking milk altogether, and his fear of anyone in scrubs, hospital cribs, and medications multiplied day by day.
He did have good days, and that was wonderful to see. But oftentimes we didn’t know he was in pain or not feeling good until it was too late and we just tried to play catch-up.
We went on multiple walks around the hospital while listening to music every single day he wasn’t connected to chemo, and eventually we found a rhythm of who would be at the hospital with him on which days, who would be at home with his older sister, and how to navigate work where neither of us had to quit so we weren’t without pay or health benefits.
Over the course of 7 months, Isaac endured so many procedures, exams, daily medications to keep symptoms at bay, and over 950 hours of chemotherapy. Over 30,000 miles were driven back and forth to care for him between multiple people.
On May 30, 2022 Isaac got to ring the bell, signifying the massive achievement of finishing chemo and conquering cancer! And on June 3, 2022 he was discharged for the last time to go home and learn how to be a toddler!
We still had to drive back for monthly appointments through the end of the year, every 8 weeks after that, and we are now at every 12 weeks in between blood draws.
Isaac is now 3 years old, thriving in his first year of preschool, and is loving life! He loves to watch movies, play outside, eat, read books, dance and sing, and play with friends. He loves dinosaurs, Buzz Lightyear, Moana and tractors. It’s been fun watching him get to enjoy life without medical struggles for the first time since he was born.
-Amanda, Isaac's Mom