Joel Strong

Joel's Cancer Story:

Joel's journey began in September 2018 when his mom found a hard lump underneath his rib cage one night. The days that followed that night were a blur of emotions, medical terms and just overall devastation. Joel was diagnosed with neuroblastoma at 18 months old. He had a softball size tumor on his right adrenal gland and was stage L1, which meant that the cancer was localized and only in one spot. After his diagnosis he started chemo to shrink the tumor so it would be easier to remove. He did 4 rounds of chemo that lasted about 4 months. When chemo ended in December 2018 they scheduled him for surgery to remove the tumor in January 2019. We were told the surgery would take about 10 hours and they would remove his adrenal gland and the tumor and possibly his kidney as well. Their amazing surgeon was able to complete Jojo's surgery in half the time and she was able to remove the tumor without taking any of his organs. During this entire process Joel was so strong! Even though he was the one going through all of the horrible treatments he was the one that kept his family and everyone around him smiling. Don't get it wrong, he had his days but for the most part his joy for life made them all stronger. January and February 2019 were full of appointments and checkups. Joel had his port removed in February 2019 and he also ran the bell to say he was cancer free. So you can imagine that they didn't think that they would be right back where they started almost a year later. The chances of relapse for Joel were significantly low so they were all devastated and shocked when his scan on December 4th 2019 showed some areas of concern. After his PET scan results came back on December 10th they scheduled an appointment to meet with the surgeon to talk about surgery to remove the two tumors. Surgery took place on December 26th, 2019. Surgery was going to be about 5 hours, so when they called to tell them surgery went well and was over 2 hours earlier you can imagine that they were excited and relieved. Only to find out from the surgeon that the reason surgery was shorter this time around was not a positive one. Joel’s tumor had almost doubled in size in a little over 2 weeks. So the surgeon and oncologist decided that it would be best to just do a biopsy and then start chemo right away to shrink the tumor before trying to remove it. Joel had 2 rounds of chemo to shrink the tumors starting the end of December 2019 and finished in January 2020. He then had another MRI on February 9th and the tumor was 50% smaller and surgery was performed on February 12th, 2020 and the entire tumor was removed. Joel received a round of cleanup chemo to get any leftover cancer cells. On May 18th, 2020 Joel had another MRI and again it showed 2 more lymph nodes with disease. This is when it was decided that a retroperitoneal lymph node resection should be done. Joel had a PET scan and a bone marrow sampling done and the bone marrow was negative. Surgery was done on June 2nd 2020 where the surgeon removed 10 to 12 lymph nodes from his abdomen to his groin. 6 to 7 of those nodes showed disease. It was decided that Joel needed a treatment other than chemo, since it did not seem to be working. Kim and Tom decided to get consults from other oncologists. Memorial Sloan Kettering in NYC has an amazing program where they treat neuroblastoma with innovative treatments. After talking with Dr. Modak they decided to transfer Joel’s treatment to MSK. Jojo would receive radiation but he would get what is called proton beam radiation in NYC. The entire family traveled to NYC in July 2020 and lived there for almost a month while Jojo received 12 radiation treatments. After returning home from NYC Joel received one last round of chemo on August 17, 2020. Joel had a MRI on October 2nd and it was CLEAR and everyone thought YES, it all worked! He has no evidence of disease. This is great!! Joel had another MRI scheduled for December 2020, the doctor asked if we wanted to wait till January but Kim said nope let’s just do it in December. On December 18th, 2020 he had a MRI and it showed 2 new spots, this time it was lesions in his bones in both hip bones. It had never been on his bones before, why now? Now they needed to get a PET scan to see if there were other spots. He had his PET scan on 12/23/2020 and the PET scan revealed that he had other spots on his left arm, left leg, left posterior hip, right femur near the socket and one supraclavicular lymph node. You can imagine that this news crushed the family. Once their UNC surgeon heard about the lymph node from the PET she scheduled an outpatient surgery to remove it Christmas Eve because we knew what happened last time we waited, it grew so fast. Joel started an aggressive inpatient chemo treatment on 01/06/2020 which cleared most of the disease in his bones. The family decided that the best treatment for Jojo would be an immunotherapy treatment that Jojo could only receive at MSK in NYC. He would need 7 rounds of this treatment starting 04/2021. This meant that Jojo would need to fly to NYC every month for 7 months and stay in NYC for at least 10 to 12 depending on the treatment and if he was getting scans or not. This treatment would be outpatient but very scary and painful. Since neuroblastoma is a nerve cancer the immunotherapy attaches to the cancer and kills it and the cancer is on the nerves, which can be extremely painful for some kids and it was for Jojo.

His scans in June of 2021 were clear. He completed 7 rounds of 3f8 that ended December 2021 and he stayed clear. Jojo then started the amazing neuroblastoma vaccine trial in January 2022, which is only available at MSK. Thanks to MSK and the Band of Parents foundation. He was in NYC for scans and his 4th vaccine in 02/2022 when they found a focal relapse on his spine in the bone at T3 and some lymph node involvement in his groin area on the right. This was Joel's 5th relapse. This would mean that he would need to stop the trial and start treatment again. For this relapse, he did 2 rounds of low dose chemo with 10 treatments of photon laser beam radiation in between those 2 rounds in 03/2022. They were able to do all of this at their home hospital, UNC Children's Hospital. After this treatment, Joel had scans on 04/5/22, the scans were basically unchanged. Meaning the lymph nodes were still there and they had no way of knowing if they were cancerous or not. Jojo did 2 cycles of a different immunotherapy plus low dose chemo at his home hospital and then they would rescan to see how the treatment was working. They scanned again on 06/05/22 and it was the same results as the April scans, so defeating. So the doctors suggested that he continue with the same treatment and do 4 more rounds and then rescan in October 2022..............

To follow Joel's journey: https://www.facebook.com/fightingNBtogether