Hello..wanted to introduce myself and tell about my son

[deleted account] ( 4 moms have responded )

My name is Shauna....I have a son (Robert) who was diagnosed Papillary Thyroid Cancer at the age of 10. Next year he will turn 13...and March 2009 will be our 3 yr anniversary. We are still fighting and most likely will be for at least another three years. The reason behind that is because by the time it was found it had spread doctor's said it was aggressive in him for some reason. I found a mass in his neck ( about the size of a softball) and took him to the pediatrician. That day all kinds of test's were done because at first they thought it was an infection. The doctor did a chest x-ray and CT scan and found lesions on his lungs and the lymph nodes in his neck were compressing the arteries in the left side of his neck. The next day his biopsy was done and that was the day we found out that he had cancer. He went from being our healthiest child who had never had more than a sinus infection to the sickest. They ended up removing all of the thyroid and half the lymph nodes in the left side of his neck. The lesions on his lungs is also the thyroid cancer. It was then they told us it would take at least 4 to 6 years to get him to remission. He is a 1 in 1,000,000 case for them. There is no family history of thyroid cancer/thyroid problems and he has not been exposed to high dose's of radiation. So to his doctor's he is a complete mystery....and a challenge!! There are a couple of his doctor's that spoil him rotten too!!! When his treatments are done....he has to stay at the hospital for 3 days when they do the radioactive iodine and the nurses tend to spoil him too....since both peds nurses and the ones on the adult side take care of him...lol

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[deleted account]

I don't know where that doctor has been. My husband and I had decided before we even knew it was cancer that no matter what the outcome was it would not sugar coat anything for him. We figured that way he couldn't be mad at us for hiding anything from him. It was the same way when we told our other kids...at that time our oldest was 11 and we just came out and told him what was going on. Our daughter was 4 and we explained it more on her level. Our youngest was just 5 months old and then and even now he really isn't old enough to understand it. I am trying to put a picture of Robert.



I also told the doctor's to be upfront and honest with him. I told them as his mother I feel he deserves to know what is wrong and why he has to go through everything he has to. I have only had problems with one doctor not wanting to follow that rule. The rest of them agreed with me. Besides he is a really smart child and I didn't want anyone insulting his intellengence!!

Ellen - posted on 01/10/2009

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Oh, I absolutely agree with you! although it was nice they were so nice to him, he tried to be King Alex at home and I put my foot right down...no way buddie...you're still my son and you do not rule this house, daddy and i do....keep the boundaries at home as usual...you are definately cool Shauna..good for you...we do our kids no favors even when sick to act like brats....anyway, where has that doctor been? I always told Alex the truth, when we lie to them it breeds more fear, because it is "unknown"  I would tell  Alex, yes this is going to hurt and you are allowed to cry and yell , but not wiggle ....he always responded better when told the truth....one time in an emergency room for stitches the doctor lied about a shot, and alex was sooooo mad and upset, i should have told the doctor  no, you are not going to lie, but i wasnt as assertive then as I am now....you are correct...always tell him the truth, in his language of course, like Alex was only 3 so I said the chemo was like the "ninja turtles" rushing in to kill the bad guy cells, and he got it......take care and write again ....youre doing terrific...ellen, the girl in the pic with me is my daughter melissa she is 17...I dont have alex up with me on here, just on my FB photos....oh well...

[deleted account]

We are from Missouri. Hearing about your son gives me hope for my son!! My son has been a trooper and I am so proud of him. This biggest concern the doctor's have is making sure the radioactive iodine dose doesn't get to high. The side effects are scaring of the lungs and leukemina. It's hard when they spoil him so much cause he expects it at home too. But I have told him that at home he is no different then anyone else. That's the way it's been since he was diagnosed. Some people think I am horrible for that, but to me it's only fair to him and my other three kids. One of the doctor's  had even told me not to tell him that he had cancer....i was floored by that!!

Ellen - posted on 01/10/2009

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Wow Shauna, your experience has certainly been an adventure!!! Thanks for writing....I understand about doctors and nurses spoiling kids rotten....when my son Alex was in treatment I used to call him "King Alex" because when he would come in they literally rolled out a red carpet and treated him like a king..it was terrific and I really appreciated it! Your Robert sounds very patient with all he has to go through!!! 13 is tough enough with out cancer treatments....Where are you from? I am ellen and my son Alex is a leukemia survivor, he was diagnosed at age 3 and is almost 20 now...he was treated in Cleveland at Rainbow Babies....take care and write again...

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