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My 19 YO son has NHL

jstuffy1203
Posts: 1
Joined: Jan 2014

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!

Jami

wolfen's picture
wolfen
Posts: 1209
Joined: Apr 2009

I understand the pain of watching your child suffer, yet being helpless to do much of anything to alleviate that suffering. No matter the age, they will always be our children. My daughter was 44 when she was diagnosed with Stage IV Colon Cancer.  She has mets to liver, lungs, & now pancreas. Over the past 5+ years, she has had so many surgeries, medical procedures, radiation, chemo, & debillitating side effects that I can not name them all. Last week  she had a liver stent put in as two new liver tumors blocked the bile duct. I live very far from her, so have not been there to support her physically for many of these things, which in itself, makes it doubly hard.

I have not faced the frustration that you face with the age issue & medical consent. However, my husband was diagnosed in Oct. 2012 with H&N & Lung Cancer. Many times, I had to make medical decisions for him. In our state, apparently there is no "Medical Power Of Attorney" required between spouses, but I'm wondering if this might be an option for your son's case, if he is willing. That way, you could be kept better informed & also deal with the financial matters, I think.

My heart goes out to you. I HATE CANCER. It took my husband from me, & is doing it's best to take my daughter.

Luv,

Wolfen

Ladylacy
Posts: 516
Joined: Apr 2012

I am so sorry to hear about your son.  I know the feeling as we have 4 sons.  Our youngest at 41 had one of his kidneys removed due to cancer.  And due to the HIPPA laws the doctors, hospitals can't talk to you if they are of age.  But Wolfen is right get a Medical Attorney of Power and give it to all of those connected with your son's health issues.  In our state I had to have one for my husband and I know how frustating it is to try to explain to someone on the phone that he can't talk (due to his voicebox being removed for laryngeal cancer) well he can if he uses his electric larynx but many times they don't even try to understand him.  All they say is sorry we don't understand him.  I have had those that after hearing him will talk to me.  But a Medical Power of Attorney will help with that.  Goggle it for your state.  You can find the forms on the internet and even the hospitals are supposed to have them.  Doctor's office should have something that your son signs saying they can talk to you, his father, etc.

Wishing the best to you and your son -- Sharon

grandmafay's picture
grandmafay
Posts: 1627
Joined: Aug 2009

I am so sorry to read about your son. Many of us wish or have wished that the cancer was ours instead of our loved one. as caregivers we would do just about anything to stop the pain and suffering of our loved ones. a medical power of attorney would be a good idea. If your son doesn't want to sign off on decision making, I'm sure an attorney could structure the power of attorney to allow you to make limited decisions,or, at the very least, allow you full access to medical information. The road ahead is going to be a difficult one for your family. With all the worry, don't forget to celebrate the little things and cherish the time you have together. None of us knows what the future will bring. My wish for you is that you will be cherishing that time for many years to come. Take care, Fay

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