When our son was almost 3, he started experiencing leg pain, sweating, an intolerance to heat, mood changes, and his diet completely changed. We took him to the pediatrician several times only to be blamed for giving him too much milk because he was anemic. Then proceeded to tell us the leg pains were growing pains. After changing his diet and seeing no change in his labs, they finally called in iron supplements and had us return to recheck his labs and although he had been on the supplements we went from being slightly anemic to severely anemic. They upped the dose and told us his leg pain was probably from a reaction from a recent virus although he had not been sick recently. 

Within the next couple of weeks we had to take him to the ER for severe leg pain after he passed out playing in the yard. They sent us home with opioids to help manage the pain until we could get in to see an orthopaedic surgeon. The opioids did not help and we took turns holding his with his legs pulled up to his stomach while he screamed in pain for days.

 

We made it in to see the orthopaedic surgeon and they sent us straight over to the hospital for an ultrasound. They did an ultrasound but did not tell us exactly what they found but sent us straight to Children's Hospital. At Children's we saw several different specialists and they diagnosed him with bi-lateral septic hip. They did surgery right away and put in a pic line for round the clock (every 8 hours) antibiotics to be given at home over the next 8 weeks. 

We returned to Children's for a follow-up after the 8 weeks. During this time he was weak, pale and his eyes started to bruise. We saw an infection specialist team that ran some labs and test but they told us something must be wrong because his infection levels were still at 80%. We ended up seeing 4 other specialists that same day at Children's, one of them being a rheumatologist. He was 95% sure it was juvenile arthritis but he had to rule out cancer before starting treatment. I immediately lost it at the thought of it being cancer.

 

They admitted him to do the bone marrow biopsies first thing in the morning. I took our girls home for the night while dad stayed at the hospital. I drove back in the morning after packing bags to take just in case they kept us longer, but I could not move fast enough. It was like everything was in slow motion while I was in panic. As I was pulling into the hospital parking deck, I got the call. It was cancer.

​

I couldn't breathe as I started crying. Our newborn started crying in the back seat as our oldest asked me, "What's wrong, mommy?" How could I tell her? I was either going to black out or throw up so I opened the door and threw up.

Trying to get in to the hospital to the right floor and room seemed to take forever as I tried to find my way through it like a maze. As I reached the room carrying a newborn in a car seat, the nurses rushed over to catch and help me as I almost blacked out again. They took me into the room where a team of doctors stood around our son laying in a hospital bed. They were talking to me but I had no idea what they were saying. It was only a few minutes before they literally pushed my husband, our girls and I back out of the room as they started doing the procedure right there before they even shut the door. Apparently, when they did the first biopsies they only got enough to see if it was cancer. Now they had to figure out what kind. The sample died before they could test it so they had to take him back in to get more biopsies. 

As days turned into weeks of fevers and pain, we learned that he had Neuroblastoma and it was already stage 4. They started treatment as soon as they found out. It was so much to process.

 

He went through months of chemotherapy every few weeks, had surgery to remove what they found to be the source on his adrenal gland, 14 days of radiation, a stem cell transplant using his own stem cells and 6 months of antibody.

​

After about 2 1/2 years of treatments and gaining remission right before transplant we had follow ups, scans and labs every few months. Each time we had another clear scan they would push them out further than the last. We then started to focus on long term side effects caused by cancer and the treatments themselves. We were good... until we weren't. 

 

About 8 years had passed. We weren't even doing regular oncology visits or scans anymore. He started experiencing heat intolerance and headaches. He would overheat and throw up just being with normal activity. We took him into the pediatrician. They ran labs and said he looks good. I thought something might be off with his thyroid but they refused to give us a referral. I made the appointment with an endocrinologist myself only to find out he has hypothyroidism. We thought we were good, we started medication for it and although it took several attempts at dosage we figured it out. I wish I could say that it fixed everything, but it didn't. He was on the medication for over a year but his symptoms were getting worse. More overheating, more headaches. We took him back to a couple of different doctors including the pediatrician and they assured me he was fine. I was just overreacting because of his history with cancer.

 

About 6 months later in the fall of 2022, we ended up in the ER with severe leg pain. They were going to brush it off as growing pains but at this point I knew better. I had the oncology team come take a look at everything and do a PET scan, which confirmed not only was it cancer, it was already at stage 4 again. We had relapsed... after 8 years. We started treatment right away with chemotherapy and after getting the cancer more under control we did an MIBG study trial. After the study, he was back in remission. 

After trying to recover and heal over the summer, he relapsed again in the fall of 2023. We had to start all over again. We started chemotherapy and this time added antibody with it which is very painful since it attacks the nerve cells. This got him back into remission and we decided to try a daily chemo pill to try to keep him in remission this time instead of stopping treatments all together. We feel that this might have helped but definitely didn't keep him in remission. He relapsed again in the fall of 2024 with a few spots of cancer lighting up in his leg on the scan. We did some radiation on those spots before moving into chemo/antibody again. Unfortunately, due to some delays from getting sick, having an anaphylactic reaction to an antibiotic and complications from side effects of a different antibody we tried we ended up back at stage 4.  So we decided to switch back to the antibody/chemo combo he had previously done. It took longer this time but he finally regained remission in the fall of 2025.

 

We then went right into a vaccine trial at MSK in New York which he ended up relapsing on in June 2026. we are currently back on chemo/antibody treatments in colorado which seems to be working great.

 

It has been a long, hard ride that we are still on. This is why we are so passionate about helping families just like ours... that are going through the same thing... because we have been there (and are there) and know exactly what it feels like.