Joey was diagnosed with acute lymphoblastic leukemia in October 2018 at 18 months old. We wanted to share a little bit about his journey, the realities of childhood cancer, and why your support is so crucial in research and patient support for these kids who deserve so much more.
Joey first showed signs of being sick when he went from being a super active toddler to being very lethargic. He passed out a couple times and we took him to the pediatrician and they said that is normal and some kids just do that. He had an ear infection and was getting 8 teeth all at once so they thought the fatigue was just from that. No one thought too much of it. Then came the bruises…again, the pediatrician wasn’t too concerned because kids his age are clumsy and active. A day after I sent a message about the bruises, we noticed a little rash going up the back of his legs…they were like little red pin dots…this is what made the pediatrician say they wanted us checked out by an urgent care. We now know that it was a sign of leukemia called petechia.
Upon arrival to urgent care, we saw the doctor for about a minute (that is not an exaggeration) and she told us we needed to go straight to the ER. After some bloodwork, the doctor came in to tell us that his white blood cells were very elevated, and his hemoglobin and platelets were very low, and they were transporting us via ambulance to the main campus of Akron Children’s Hospital. This started a 9 day hospital stay and a diagnosis of cancer.
In a matter of a few weeks, Joey went from our perfectly healthy little boy to beginning the fight for his life. You hear about kids with cancer all the time…but you don’t think it can happen to you…until it does.
(The day after Joey was admitted to the hospital and finding leukemia blasts in his bloodwork)
This all happened on a Thursday. Joey had his medport placed the following Monday and immediately began induction chemotherapy. Induction was a 30 day treatment phase with a goal to be in remission by the end of it. Joey did not reach remission at that time which meant his diagnosis was changed from moderate risk to very high risk and his treatment plan changed a bit to include more intensive chemo and an 8-week phase that would hopefully put him in remission. At the end of that phase, we were told he was not in remission and that his cancer was resistant to chemo. Luckily, after further testing and second opinions, we discovered that he was in fact in remission! A true victory for him as this meant we could keep him going on the plan he was on and not have to switch to anything more intensive and invasive.
(Celebrating Joey reaching remission the first time!)
The next 6 months were intense. Most of his treatment was outpatient but he still was in the clinic multiple times a week for either chemo or blood or platelet transfusions. In September 2019, the moment we had been waiting for had arrived…Joey was finally through the intensive part of chemo and he was going into maintenance chemo. Life should be more normal. We could get back to work and start to get out and do things again. The beginning of maintenance was a bit rough but after a couple months, things started to normalize and we were enjoying a little bit of freedom…then March 2020 hit and COVID became our new reality. COVID affected every person on this planet…but the effects of COVID on immunocompromised individuals and families were terrifying and led us to living in a bubble since. The only people we really got to see were Joey’s nurses and doctors – luckily they are the best! Treatment went on, our lives became more isolated, and the ups and downs of cancer treatment continued.
(Joey with his amazing oncologist at Akron Children’s on his first day of maintenance chemo the first time – Dr. Pettee)
Fast forward to February 23, 2021. Joey had what was supposed to be his last spinal tap. He was 2 weeks away from being done with treatment. That afternoon, we got the dreaded call that no one ever wants. He had relapsed in his spinal fluid – his central nervous system. Our world once again shattered in an instant as we had to scramble to plan what the next steps were to fight this beast.
After further testing, it was determined that he did not relapse in his bone marrow which luckily was a best case scenario for him at the time. We decided to move forward with a relapse treatment of intensive inpatient chemotherapy followed by cranial radiation and a year of maintenance chemo. We spent 30 long days in the hospital for re-induction with MANY scares along the way. I have never been so terrified in my life. But he did achieve remission again which was the main goal of that month. The following year we spent 3-5 days in the hospital every 3-4 weeks. Life was tough…but Joey was tougher.
(Joey at the beginning of his relapse treatment)
(Joey toward the end of his first month of relapse treatment. Things quickly changed from bad to worse and he had a very tough time)
In March 2022, Joey started cranial radiation. He did great with it for the most part but also received chemo and steroids so it wasn’t easy by any means. This was what we had been waiting for. The chemo got him into remission and the radiation should keep him there. At least that is our hope and our plan. He has been back on maintenance chemo since March 29th and he should be done with treatment in March 2023. He’s started to live life again when possible in between appointments (OT, PT, clinic visits, hospital stays and surgeries from a port infection, etc.) and is the happiest little kid. There are so many side effects from cancer treatment that people don’t talk about but Joey will basically have appointments and issues for the rest of his life to combat the lifelong effects of what he has gone through. We expect learning delays and potential disabilities, PT, OT, and the risk of secondary cancers. There is so much more to all of this than what meets the eye and something that we hope can improve with better treatment options in the future.
Joey’s resilience, strength and bravery have amazed us every step of the way.
So why do I share Joey’s story?
Because it can happen to anyone. It’s important to know the signs. 1 in 285 children will be diagnosed with cancer. It is the number one cause of death by disease in children.
It is important to be aware that only 4% of the National Cancer Institute’s yearly budget is allocated to go toward researching dozens of types and countless subtypes of childhood cancer. That is why supporting research and local children’s hospitals is so important.
We hope to raise funds through Joey’s story for the Akron Children’s Hospital Showers Family Center for Childhood Cancer and Blood Disorders. The treatment Joey has received through this journey has been wonderful. We have felt like family with the staff and I know how deeply they care for Joey and our family through their actions and the care they give. I truly can’t say it has been all bad, because the staff, nurses, doctors and fellow cancer families have brought so much good to us throughout this journey. You can find out more at the link below. We hope you will consider supporting families like ours and research done through Akron Children’s Hospital. Everything will stay local within northeast Ohio between the two clinic locations in Akron and Youngstown. ACH is a leader in NE Ohio for hematology and oncology treatments – a true gem that has a campus right here in the valley.
(Joey now enjoying and living life to the fullest outside of doctor appointments and treatments!)
If you’re able, please donate and upload your picture to show support for all families affected by childhood cancer.
Use #JoeyStrong on all social media platforms!
We will keep your family in prayer as Joey comes to mind. Stay the course and keep your eyes above! The Sydney Candle Co., Family<3