Jan 21, 2014 - 12:01 am
My 19 year old son was diagnosed in early december with NHL - oddly enough, on my birthday. The first oncologist we talked to said 'no big deal, Stage 1, 70-90% cure, if you are going to have cancer, this is the kind to have." A week later, he told us a better prognosis would be 60% 5-year survival rate with a high incidence of recurrance. A week after that, we went to Mayo clinic for a second opinoin. We were told that he was stage 4, not stage 1 as there was pancreas involvement. When I asked the Mayo Dr what the prognosis was with this new information, his response was 'let's talk about the positive things...". going from a possible 90% cure to 'let's talk about the positive things' in less than 3 weeks was a roller coaster to say the least. His official diagnosis from mayo was primary mediastinal large diffuse B Cell lymphoma. He had a 6"x4"x3.5" mass in his chest which was causing shortness of breath, coughing, elevated heart rate, and paralysis of his left vocal cord and is considered Stage 4, bulky, agressive.
My son has had two rounds of R-CHOP and goes for his interim PET/CT tomorrow and round 3 of R-CHOP on Friday provided the results of the PET/CT scan show that the treatment is working. I am terrified as before each treatment, some of his original symptoms return, and this time is no differnt. I am trying to stay positive and know that percentages and statistics are just numbers and there have to be good outcomes to offset the bad or the fatality rate would be 100%. But what do you do when a Dr tells you that your 19 year old may not make it to his 21st birthday?
Thankfully, his side effects have been relatively minimal - fatigue, mild nausea, mouth soreness. His LDH went from 658 at diagnosis to 228 after the first treatment. He has a great attitude and is taking this all in stride for the most part, which i know helps a ton. I have been doing ok, but did have a major melt down this weekend. Nothing really to set it off, but I literally could not stop crying from 9pm friday night until 9am saturday morning - I wish I had found this site then. I thought I was losing my mind, and I may be, but I seem to be handling things better now. except that I feel guilty because he is the one going through cancer, not me, so why should I be having a melt down when he doesn't?!?!?! Up until then, I had 'moments' or 'episodes' but not a major meltdown. Is this normal???
The other thing that is a pain is that he is 19. So no one can talk to me or discuss any bills or medical infomation without his consent. One problem is that HE HAS NO VOICE, so it is extremely difficult for him to give verbal consent over the phone. Even though I warn these people about this issue, they still don't get it. One lady from the hospital billing office asked him to speak up! It is ridiculous. I couldn't go into the pre-op room or recovery room with him because he was considered an adult. The other problem is I AM STILL HIS MOM AND HE IS ONLY 19! In my eyes, even though I have raised a responsible, intelligent young man, he is still a teenager and thinks he is invinsible. I had to darn near force him to go to Mayo clinic for the second opinion and the Dr there told me that I probably saved his life by making him go. This is just another stepping stone in his life according to him, but to me, it is the literal fight for his life! I am not sure if this kind of attitude is good or bad? I don't want him to be depressed, but his 'no big deal' attitude is killing me.
I know that I am not alone in this fight or situation. I would love to hear from others who have had similar experiences either with this Dx, treatment, or having an 'almost adult' child as a cancer patient.
Thanks for reading!