When It All Started
When I was thirty three weeks pregnant I went for a routine sonogram that revealed Tristan had a huge mass in his abdomen. It was so large the doctors couldn’t tell where it was coming from. It was in contact with all of his organs and had pushed his heart to the wrong side of his chest. He was taken by emergency c-section a few days later. He was born weighing 3 pounds 12 ounces and ten percent of that was the weight of his tumor. When he was three days old he had his first surgery to remove his primary tumor which ended up originating from his right adrenal gland. His adrenal gland had to be removed along with the tumor. It took a month to get a diagnosis because nobody could figure out for sure what kind of tumor he had. In the meantime more and more tumors were popping up in his right lung. When he was just over a month old we found out he had adrenocortical carcinoma which is a very rare cancer. Only 1 in 2 million people get it. Of course they found no information pertaining to a preemie born with it so we were flying by the seat of our pants. They did know that ACC is an extremely aggressive and often fatal disease in the later stages. Tristan was clearly Stage IV which was about as bad as it could get. He had his second surgery soon after to remove the pulmonary tumors and ended up losing forty percent of his right lung as well. In the weeks after that he started his chemotherapy and remained on it for a year. In that time he developed epilepsy as well as hypothyroidism. Luckily both went away when he started being weaned off the chemo and they have never returned. At the time there wasn’t any alternative to the chemo he took and it was an extremely toxic neurological agent. Since he took it during the first year of his life when his brain was doing so much growing and developing, he had major delays across the board. Some have since resolved themselves, others not so much. We found out this summer that he is Autistic so we are now traveling again into unfamiliar territory. He has now been in remission for nine and a half years with no recurrence at all. We were all devastated to say the least. Tristan’s father had a hard time dealing with facing the possible death of his son. We were told several times that he wasn’t going to live and that crushed him. Emotionally he shut down and didn’t face the reality of the situation. Thankfully Tristan stayed with us and as time went on things got better. His father is a wonderful man who loves his children dearly but he was in denial for a long time when it came to Tristan’s illness. Even though he was physically with us every step of the way, I was the one that was living the reality of what our life had become. I blamed myself for a long time for not doing a better job of protecting my baby while I was pregnant and then I started to feel as though I wasn’t a good mother because I let something happen to him. At the time these feeling ate away at me. I was able to hide it from everyone very well. I fought for Tristan tooth and nail his entire life but inside I was falling into a deeper and deeper depression. I finally sought help and was able to move on and let go of the anger I had towards cancer. Don’t get me wrong I would still love to ring cancers neck if I could but I am able to face each day thankful that my son is alive and well. I am able to focus on the positive now and enjoy both of my children the way I should. I also now understand that everything I felt was normal and that I am human and nobody expects me to be perfect. By making mistakes I am teaching my children a valuable lesson about life! Tristan lost his one adrenal gland during his first surgery and because his chemo couldn’t tell good adrenal cells form bad ones it killed his remaining adrenal gland, giving him Addison’s disease. This is also a potentially fatal disease but we deal with it one day at a time and as long as we are diligent in his health he will be just fine. It does require him to take replacement hormones everyday for the rest of his life and we do have to give him shots if he is unable to orally take his medicine but we deal with it the best we can. Stress, illness, dehydration, and fractures can send him into adrenal crisis very quickly and kill him but as long as we are on top of things he is all right. It helps that he is getting older now and understand his own body more. He is now able to let us know when he needs extra medicine to cover those situations which helps tremendously!
