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ABOUT PEDIATRIC
THYROID CANCER TREATMENT
AND FOLLOW-UP SUPPORT &
INFORMATION FOR PATIENTS and CAREGIVERS THYCA HOME www.thyca.org To view
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Pediatric Thyroid Cancer |
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Noah's
Story Noah's
Story I
stopped by the church office the other day. I hadn't been in church
in years. There was a bucket on the counter collecting "dimes
for DJ". DJ is a six-year-old boy in the congregation who has
just been diagnosed with leukemia. After leaving the church, I cried
all the way home. All the emotions of my own son being diagnosed with
thyroid cancer in October of 2005 came back as though he had just
been diagnosed. Noah had been sick for a couple weeks with fevers, cough, aches, etc. He was admitted to the hospital for a rash called erythema multiforme and some complications associated with it. They thought he had pneumonia. I kept taking him back to his pediatrician's office because he wasn't getting better. The day I took him in with enlarged lymph nodes in his neck he had lost 5 pounds in less then a week. His doctor took me out of the room and said he thought Noah had lymphoma and needed to be admitted to the hospital right away. In
the meantime, Noah had tested positive for coccidiomycosis or Valley
Fever, a fungal infection common in the southwest. (Mold spores from
the dust can get in your lungs. Most people never even get sick from
this.) This would explain ALL his symptoms. But, we did the biopsy
anyway. The biopsy surprised everyone when it showed thyroid cancer.
Noah
had a total thyroidectomy with radical neck dissection of many lymph
nodes the cancer had spread to, followed by a biopsy of the mass/lymph
nodes in his lungs. The doctors were 99% sure this was metastasis
of the cancer. It was NOT!! It was the Valley Fever, which he is still
on medication for. Noah had radioiodine I-131 ablation, followed by
yet another biopsy of lymph nodes in his pelvis that "lit up"
on the scan. They were also negative for cancer. Joshua's
Story Joshua
was born in 1992 in Sofia, the capital of Bulgaria. Our family had
just recently moved from Germany to Bulgaria in the spring of 1992. The next step was a neck ultrasound. As soon as we did the ultrasound and saw the nodules, we didn't wait a moment longer, but took him to my endocrinologist. I asked my endocrinologist to touch Joshua's neck and tell me what he thought, right there in the corridor without a "fancy" appointment. The
doctor was certain it was the thyroid. He sent us back to radiology
to get a copy of the ultrasound and in the meantime he got the results
from the FNA. That very day Joshua was diagnosed with papillary thyroid
cancer. At that time he was only 12 years old and pretty scared by
the sound of this diagnosis. I couldn't lie. I said: "I wish I could, but it is indeed the "bad thing". So, John went straight up to his room, locked himself in, turned off the lights and lay in bed, refusing to come eat dinner. I spent almost 2 hours that night talking to him that he must be strong for his younger brother and be his best friend in these difficult times. The
three brothers spent that night together talking, encouraging, and
praying for each other.
What
we all thought was a harmless bump that the doctor/ surgeon/ Otolaryngologist,
removed from our 13-year-old son Travis's neck was now, the doctor
told us, "more complicated than we expected." Those words
flooded my mind over and over and over. Our
family has learned to cherish each day as a precious gift. Cancer
totally skews our perception. I believe for the better. Mortality
is now more evident, life's choices more relevant, and whom we choose
to spend time with is viewed and treasured differently. Cancer has made us "friends" with a lot of different people. Our voyage has included some very incredible individuals. Some are Travis's medical team; his doctors have been great. One doctor phoned and ended up hearing all about our insurance woes and hassles. He patiently listened as I had a meltdown and offered to do what he could to straighten things out. And he did, going above and beyond the call of duty. Many of the nurses have treated Travis like a person and not just a patient. They were considerate and took my concerns seriously and therefore made a huge difference. Cancer
survivors and those who've gone through cancer with a loved one have
offered shoulders to cry on, outstanding advice and true understanding
while sharing our pain. And
last but not least, we can't forget our faithful family and friends.
They brought us meals, phoned, e-mailed, stopped by, prayed for us,
sent cards of well wishes, just to name a few acts of genuine love
and support. All have made the voyage bearable. We know that these
very unfortunate circumstances have allowed us to be blessed by so
many. Learning to receive the blessings has not been easy. Believe
me, it's much easier to give than to receive. Katie's
Journey When my husband Joe and I found out that our eight-year-old daughter Katie had thyroid cancer, we were confused, overwhelmed, and not sure how to get her the best treatment. We were relieved to realize that she wouldn't require chemotherapy, but didn't understand the process that we would have to go through in order to see her get better. Joe started researching this disease on the Internet and eventually found the ThyCa web site. What a blessing! Finally a place that posted treatment options, offered encouragement, and answered questions that were posted. We were also thrilled that it offered a section specifically addressing the needs of children (www.thyca.org/pediatric). We were able to make sure our surgeon was on track and that the doses of radioactive iodine were in line, and to follow recommended diets for optimizing her treatment. We got the name and number of a specialist in pediatric thyroid cancer from one of his patients in the e-mail support group, and had a consultation for a second opinion with him about Katie. What a reassuring feeling to be able to consult with a knowledgable doctor who could tell us that our doctors were indeed on track. Her disease was extensive enough to be classified as advanced cancer. Her thyroid, neck, lymph system, lungs, and skull were all involved. The doctors told us to expect multiple RAI (radioactive iodine) treatments and that it would be at least two years before we would see any significant improvement. Because of the information found on ThyCa's web site, we were able to avoid the pitfalls that can compromise treatment. Common errors such as a CT scan with contrast or a surgeon that doesn't know how to perform a radical neck dissection with plastic surgeon like closing were avoided. Our surgeon not only surgically removed cancer, but also used small incisions that are almost invisible only 8 months later. We insisted that all scans be done without iodine contrast materials. Also, as suggested by the ThyCa web site, we put Katie on a low-iodine diet for two weeks before her treatment with RAI so the treatment would be optimally effective. Guess what? It paid off. Eight months later, Katie's Thyroglobulin level, which acts as a cancer indicator in her blood, has dropped from a level of over 7,000 to a barely registerable level of less than 0.5. The doctors are amazed at her progress and we credit her remarkable recovery to the protocols we discovered and followed on the Thyca web site and the thousands of prayers by people all across the nation that were said in her behalf. We went from being overwhelmed to being fully educated advocates for our daughter's treatment as a result of the ThyCa site. |
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