January 2020 started off like most years. Hopeful life would be great and we would have a great successful year! As we all know COVID happened. Devastation struck many… we just could not believe we had to stay home and be the boys for weeks… what the heck were we going to do. This is crazy! Well this time we spent together was a blessing for us. We got to spend the best family time together. Once you fast forward to the end of June our lives came crashing down.
End of June, it was a Friday night to be exact and Jay was getting James ready for bed. He noticed a small pea sized lump on James’ neck. I looked at it and thought it was probably a swollen lymph node from who knows what. I said we should wait and see and Jay said he wanted to get him looked at. Saturday I made an appointment for James and off we went. The dr. did lab work and had an ultrasound done. The labs were normal, and the ultrasound said to follow up in a month to rule out any kind of growth. Time went on and we started to see a change. The lump was bigger and there seemed to be another one. But James was acting the same… nothing changed with him. Fast forward to mid-July.
I had my mom instinct to call the dr. one day. It just wasn’t looking normal and was now red and irritating James. Again, I kind of thought the lymph node that was swollen before is now infected. Our pediatrician Dr. Smith is amazing. She never overreacts about anything, very calming, and very comforting about everything. When she saw James (her first time because another dr. had seen him the last time) she didn’t lead on that something was wrong. But when she started making phone calls to the ENT to get us in that day or the next… red flags were going off with me. Then she ordered more labs… these labs had cancer markers. More red flags. But trying to keep thinking it’s nothing. He can’t have cancer… no one we know has kids with cancer.
We went to the ENT and saw Dr. Costello. He is an amazing dr. like Dr. Smith had said. He talked with us about what was going on and then proceeded to look up his lab results… beating around the bush he avoided the cancer marker results. We eagerly asked what that said. That’s when he said they were elevated to an unnormal level. I immediately started to cry….. He was trying to tell us it could be a few different things. We were still trying to hang onto hope everyone was wrong. He wanted a biopsy done to see what it was all about. It was a Wednesday or Thursday… the moment we left his office Tufts was calling me setting up everything for ASAP. Our heads were spinning, and our heart was breaking. We got the biopsy and had to wait all weekend for the results to be in the following week. Well, that weekend was a blur. I could not tell you one thing that happened that weekend besides a lot of crying and drinking.
July 21st…. a date I wish to forget but know I never will. A date that is stuck in my head and wont ever leave. My phone rang… Dr. Wiltsie was on the phone (his oncologist). She said she had his results, I put her on speaker phone, and she said that it was in fact Lymphoma… she explained that its important you get him in now so they can admit him and start therapy. Okay I said we will be right there. I hung up the phone and it was a scene from a movie. Our lives just fell apart in a matter of minutes. HOW COULD THIS BE HAPPENING TO US?!?!?! James was napping. We packed bags and got him and off we went.
We then started our cancer journey. We thought that would be it… but after his 1st month of treatment he developed seizures. He was sedated so much he was put on a ventilator for a short period of time and was on so many drugs until we found out what would work and what would not. He still receiving his chemo the whole time. We had no idea why the seizures happened. Was it a reaction to one of his meds, or something more? After weeks and weeks of biopsy’s and waiting for results we found out he has a chromosome 14 inversion. His cells are mosaic, which means some of them have chromosome 14 as a ring, some cells have chromosome 14 touching 13 and the rest have chromosome 14 touching 21. But in all his chromosomes there is a marker, the marker is an extra chromosome basically and it is 21. We found where the seizures came from but where the cancer came from is a mystery still.
We are choosing to be positive and think this is just a small part of our lives and it will get better. We live day to day because planning can be too overwhelming!
