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My son's story

PostPosted: Tue Aug 25, 2009 1:18 pm
by mom2kidw/papthycan
My son came home from school on March 24, 2006 complaining of a headache. By the way it was sounding it was a sinus i gave him tylenol for the headache. He went to sleep and when he woke his head was hurting more. So i kneeled down in front of him and looked up at his face. When I did I noticed a mass in the left side of his neck about softball size. My husband and I decided to watch him over night. When I woke him for school nothing had changed so I call our pediatrician. The had me bring him in right away. When we got there he was taken straight back and the doctor came right in. He talked to me and then to my son. Then start his examination. He said he didn't care for what he felt and wanted to run tests. I asked what it could be. I was told best case a massive infection he would be in the hospital over night getting mass dose of antibiotics. Then I asked for worse case...just to prepare myself. That was when I was told it could be some form of cancer.

So we went down and had a xhest xray done then bloodwork. Then we were sent home to wait for the results. The bloodwork came back first showing everything within normal limits. Then 20 minutes later the doctor calls me....saying we need to come back in. Some thing showed up on the chest xray. We go back in they do a TB test and then a CT scan. As we were waling back to the exam room the doctor stopped me asking me if I was ok? I started to cry and he told me I had a right to be afraid but I needed to pull it together for my son. After they administered the TB test went to the hospital for the CT scan. When they started the scan I had to wait in the hall. The guy doing the scan called in the radiologist who was laughing and joking around before he went in the room. When he came out he was scratching his head and just looked at me. We went back home waiting again for results. When I got the call I knew it wasn't good.

The doctor's voice was shakey and said that the scan wasn't good. I needed to get him to the hopital and when I got up on the pediatric oncology floor I would be great by a surgeon and an oncologist. When we got there my son was put in a private room and everything was explained to us. They needed to do a biopsy of the lymph node tissue to find out what was going on. If it was an infection then they could clean some of it out and then give him antibiotics. If it was cancer then they could put the port in his chest and take more to send it off to find the exact kind of cancer. This way more than one lab was testing it and making sure it was right. Well after being in the OR for two hours the oncologist came out and told me my son had cancer this was March 26, 2006. We went about a week later to see a ENT head and neck surgeon. He told us our son had Papillary Thyroid Cancer and that it had spread to his lymph nodes and his lungs. Our only choice was total removel of the thyroid and half they lumph nodes on the left side.

A couple weeks after his big surgery they administered his first dose of radio iodine. We are now in our third year of fighting his cancer. We were told in the beginning it would take any where from 4 to 6 years to get him into remission. In this time we have went back as far as we can to see if anyone has had thyroid issues. We have been out of luck and he was never given radiation for other medical issues. So he is a 1 out of 1,000,000 case with his age, no family history, no exposure to extreme radiation. They have had to put him on two different doses of Levothyroxin. 5 days a week he takes .175 mcg and two days a week he is on .150 mcg. The last I-131 dose was 117 microcuries....which he put radiation off 8 feet away. He spends 3 days in the hospital, but they give him a game system to play on, TV and vcr/dvd palyer, and the nurses spoil him rotten.

The last scan showed all the cancer being gone in his neck, but we still have his lungs to work on. They have told us the I-131 gets to much higher and they will have to do some chemo. They can't risk the dose getting to high and scaring his lungs or putting him in to high of a risk of getting leukemia. We are waiting for treatment to be done this year....since he can only have it done once a year.

Re: My son's story

PostPosted: Wed Aug 26, 2009 5:48 pm
by Pleidies
That is an incredible story, thanks so much for sharing. You said in another thread that your son was 10 years old when diagnosed, right? That is really, really young.

My thoughts are with you guys - you seem to be handling about as best as you could hope to. Good luck with your future battles!

Re: My son's story

PostPosted: Fri Aug 28, 2009 4:34 pm
by mom2kidw/papthycan
Yes, my son was diagnosed one month after turning 10 years old. March made our 3rd year of fighting. His doctor's have said that he is a very odd case. In fact they have been documenting his case to study it more and use it if other cases come up. Thank you for the thoughts....I still to this day have my ups and downs. But at the same time try to remain positive. Our family has really pulled together. I have three other children and even with all that we go through with doctor appointments and hospital stays they don't have issues.

There are two quotes that have helped me a great deal through this and I have added them below:

"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." Mother Teresa

If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell.
Lance Armstrong