Isaac's parents Tori and Ryan are beautiful people and have dedicated their lives to helping others. Tori is a Registered Nurse and Ryan volunteers as a firefighter. With Isaac's chemotherapy and so many hospital visits, Tori is unable to return to work and Ryan has had to reduce his work hours. They have helped so many people in their lives and the time has come where they need your help the most. Please consider donating to their GoFundMe to help them with Isaac's medical bills.
Meet Isaac. Diagnosed with Trisomy 21 at just 2 days old followed by a Leukemia diagnosis soon after, this little guy with the strongest, bravest heart has become an Instagram sweetheart! We came across Isaac’s instagram account recently, which is run by his parents, Tori and Ryan, and we absolutely had to find out more about him!
TRS Care reached out to Tori, Isaac’s mom, to learn about Isaac’s journey with pediatric cancer and to get an insight from a parent’s point of view on how to cope when their child is diagnosed with cancer at such an early age. Please note this interview has been edited for length and clarity. There are some excerpts and pictures in the article that have also been taken from Isaac’s instagram page as well.
How was Isaac first diagnosed?
A week before Christmas 2020, this little man surprised us by making his appearance two weeks before his due date. But this was not the only surprise! We found out 2 days after his arrival that he had Trisomy 21 and a Pre-leukemia condition called Transient Myeloproliferative Disorder. TMD is a bone marrow disorder that can occur in newborns who have Down Syndrome. For Isaac, this meant an overproduction of leukocytes and an underproduction of platelets. In the first month of his life, Isaac needed 2 platelet transfusions and countless blood tests. We were told that most infants will outgrow this condition, however, 1 in 4 babies will go on to develop Leukemia before the age of 5. While this was something that always lingered in the back of our minds, we were trying to stay positive for Isaac.
In August 2021, after several months of monitoring his TMD, we came in for an appointment with the oncologist and found out Isaac had cancer.
Cancer is a scary word. I'm sure you had been feeling a whirlwind of emotions when you found out about Isaac's Leukemia diagnosis. Could you talk about what you were feeling when you received the news?
I felt numb.
Even though we had been preparing for this day, it was still a shock to find out that Isaac was the 1 in 4. As the news sank in, we were so scared and heartbroken. The uncertainty of Isaac’s future was so much to handle and both my husband and I were emotionally spent. Isaac had spent over half of his life in hospitals being pricked with needles every single day. He was woken up several times a night from beeping machines and nurses taking OBs. He wasn’t allowed to eat by mouth and was sick of having tape on his sensitive skin all day. His tummy would get sore and bloated from wearing his CPAP and he seemed to have always been getting sick. But through all of this, our little trooper never stopped smiling. Not once.
After receiving Isaac’s diagnosis did you decide to get treatment immediately?
We were guided by the oncology team who encouraged us to begin treatment immediately. Within a couple of weeks Isaac was admitted for a lumbar puncture and his first dose of chemo. The chemo journey was incredibly difficult for us. It was physically and mentally draining dealing with the sleep deprivation, lengthy admissions, loneliness, and stress of the unknown future.
Not to mention the huge financial burden. We were living on a quarter of our usual income as I had to take unpaid leave and Ryan had to reduce his hours at work. Our savings took a big hit, but we were lucky to have a GoFundMe set up for us which was a huge help!
That’s great! What made you start your social media journey?
We started Isaac’s Instagram during his second admission in early January 2021. Within just a few weeks of being here, Isaac had taught us so much already, and his extra chromosome had been the blessing we never knew we needed. We wanted to show the world the beautiful side of Trisomy 21 with the hope of reducing the stress and worry of parents dealing with a new diagnosis.
What would you suggest is the best approach to tackle a rare pediatric disease?
I think the approach that helped Ryan and I deal with Isaac’s Trisomy 21 and cancer diagnosis was to access help from friends and family as much as possible. We were lucky enough to have family and friends closeby who could come in for an hour or two and give us a breather. It made a huge difference being able to go out into the sunshine and stretch our legs.
Another big thing for us was finding time to spend together as a couple. For months, we were only seeing each other during the 15 minute swap over period. Only one parent was allowed by the bedside during the peak of COVID. We were given an exemption after a nurse saw me crying one morning, so my mum was allowed to come in for a night so Ryan and I could spend some time together.
I’m sorry. That sounds incredibly tough. Did you and Ryan join any support groups?
We spoke with the Leukaemia Foundation a few times, and they were very helpful. Speaking with the parents on the ward too was great as it helped us remember that we're not alone. One mum on the ward said "we just have to take it one day at a time." It's simple advice, but it's so true. It was helpful to remember this phrase and try to stay in the moment.
We absolutely agree. It definitely helps to take it day by day and stay strong in the moment rather than worrying about the future. What other advice would you give to other parents in a similar situation?
Our advice to other parents is to be kind to yourself, take time out regularly, and spend as much time with family and friends as possible.
After a very long year of chemo treatments and hospital stays, Isaac has officially said goodbye to the cancer ward as of April 2022!
He is now sitting independently, improving his swallowing muscles and eating lots of purée, clapping, waving and following instructions. He can stand with assistance and no longer needs ANY OXYGEN!! I have to say I am so so proud of this little legend for smiling all the way through and copping chemo on the chin like it was just a paper cut. You are so loved by everybody Isaac! (Especially Mum and Dad)