Meet Andrew!
Andrew’s mom Laura represents Hackensack Meridian Health on the Parent Working Group and has been involved with PR-COIN since 2014. This is the story she gave during her Ignite Talk at the Spring 2021 Learning Session. Watch the ignite talk recording to see the photos referenced!
My husband Jim and I have 2 sons – Jimmy and Andrew. Andrew was diagnosed with JRA in 2003. This is a picture of us in our favorite place, Disney World in October 2002. This trip holds significant memories for me because just before we left for Disney, I had taken Andrew to our pediatrician because he was not walking as he normally would, and suddenly my son who took his first steps at 11 months old was asking to be carried and would no longer go up and down stairs without crying. He would point to his left foot and say “ouchie, mommy”.
Our pediatrician put my mind at ease and said he did not see anything unusual and could he possibly have stepped on a Lego and hurt the bottom of his foot? Having 2 young sons and about a million Legos in our home – that for sure sounded like a probable reason for Andrew to be acting the way he was. We were told to keep an eye on him and have a great time in Florida!
We did that but by February of 2003 we were back at the pediatrician’s office – this time, Andrew’s knees looked swollen. We had blood work run and we were referred to a Pediatric Rheumatologist because our pediatrician suspected JRA.
Here is when our story gets interesting. We live in New York State and are so very fortunate to have several options within an hour drive of our home. Our pediatrician gave us the choice of 2 practices, one being Hackensack and one not. Well, I decided to go to the one that was not Hackensack just because I was more familiar with the location and being a young mom who was going to be doing the driving, I went with a NY doctor. Funny how things happen in life.
Tomorrow 3/14 is my birthday and the reason I never forget the day we received Andrew's official diagnosis – it was the day before my birthday- 3/13/2003 – 18 years ago!
In 2003 Andrew’s diagnosis was Pauciarticular JRA – which since being diagnosed has been re-named to Oligo JIA. He extended with additional joints and had 2 uveitis flares in the early time of his diagnosis. His rheumatologist could not get his left ankle calm. At this practice, Andrew received a joint injection in his knee and later in his ankle. Never were we offered a medication stronger than NSAIDs and DMARDs.
Andrew never was put on Methotrexate and biologics never even entered the conversation. I would like to point out that in 2003, networking with other families was basically non-existent, I had no one to ask if his care seemed normal or if he would benefit from stronger meds- his diagnosis pre-dates Facebook and social media. So we stayed with this practice for 5 years, not really knowing things could be different.
In 2008 after many years of meds and still no remission, we went for a second opinion, That appointment was at Hackensack. When we walked through the doors we were greeted by Doreen Tabussi who did an intake and reviewed Andrew’s history – then we had his first appointment with Dr. Yuki Kimora. She did a full exam and as I sat and watched I noticed she looked at his ankle but really was focused on having him open his mouth and move it around and do different things with his jaw. She seemed very intense and before I knew it, she was asking to photograph his face and have me sign a consent form for her to use his information in a scholarly journal she was writing about TMJ Arthritis. I sat there thinking – what about his ankle, that is the problem, what is going on here…this was our first experience with a hospital that is so focused on research and improving the outcomes of children with Arthritis.
Long story, short, we transferred Andrew’s care to Hackensack and have never looked back. We had an MRI that confirmed his TMJ had arthritis and it already had damage. This was hard for me to hear because as a parent we are making big decisions for our young children regarding their health care. I made the choice of which doctor I took him to initially and as a result he ended up with permanent damage to his jaw. I reflect on that time often and while I have mom-guilt over it, I realize that the only way for things like this to not happen in the future is by sharing Andrew’s story, in doing this we are helping to ensure other children will have a better course of treatment and ultimately a better outcome.
Once we heard of his TMJ diagnosis, his treatment became more aggressive, adding methotrexate and Enbrel. Suddenly, I was telling Andrew to stop running around in the house. This was something I probably had never said to him, ever. He had a new lease on life and was able to be a kid thanks to his new treatment plan. During this time, we came to know Maryellen Riordan who is a research nurse at Hackensack. She would meet with us at the beginning of our visits and ask if we would be interested in sharing Andrew’s data for various things she was working on and I was always happy to share.
This is what it means to be a part of a PR-COIN center, always knowing that research is happening, and data is being shared with all of the centers. While we are sharing Andrew’s experience someone in another center may benefit from his treatment plan and vice versa.
After a few years, Enbrel stopped working for Andrew and we had to come up with a new plan. He was in 8th grade and was fortunate to be accepted into a clinical trial for injectable Actemra. This was an exciting time for us, Andrew was given an insider view of what it is like to be a part of a pharmaceutical study. He was fascinated by it all. During this time Dr. Jen Weiss became his primary rheumatologist and she followed his progress on a very strict schedule. He was in the study throughout his entire 4 years of HS and I can share with you all that this had a huge impact on Andrew’s future.
In 2018 Andrew graduated from HS and committed to Albany College of Pharmacy and Health Sciences. He is in his 3rd year in the PharmD program and will graduate in 2024 with his Doctor of Pharmacy Degree. I know his JIA journey led him to his career choice and as much as it has been difficult, this has made him who he is today. To say we are proud of him is an understatement. In the spring of 2019, it was decided to stop Actemra and see how Andrew would do off the med. He had been in medicated remission for about 2 years and we were at the end date for the trial meds. Today, Andrew is still off all meds and is doing well.
I do have to go back to a detail I shared earlier – in 2008 when we discovered Andrew’s TMJ arthritis, that took us down another road. He had damage and we began seeing an Orthognathic Surgeon who worked with our team at Hackensack and with our orthodontist to follow Andrew’s development regarding his jaw.
This past December, Andrew underwent an 8-hour surgery where his jaw was fully reconstructed to correct the damage his JIA did to his jaw. It has been almost 3 months since his surgery and he is starting to eat solids and has been working with a Physical Therapist to regain range of motion. This was a big surgery, and I will not sugar coat it, it was scary, and the early days of recovery were horrible. I share this because I do not want to see other babies go through what Andrew had gone through. I challenge you all to keep up with your research, continue to challenge the status quo and find new ways to improve the quality of care that all kids receive. Get more centers involved, so your initiatives can be shared and used to obtain what we all want, which is better outcomes for kids with rheumatic diseases.
It is my hope that by continuing to share Andrew’s story we can close the gaps that exist in treatment and one day we won’t be talking about a kid who was diagnosed 18 years ago and finally achieved remission after 16 years. We want to celebrate the stories of the child who was diagnosed and achieved remission in a few years, we need more stories like that and less stories like Andrews.
I will close with this slide, it is funny how someone’s personality can still be the same after all these years, Andrew just after his diagnosis in 2003 and in 2020 moving out of his dorm– both times wearing a superman shirt – you can say Andrew is our superhero!
Visit our Get Involved page to learn more about how you can get involved in PR-COIN.