A Mother's View
Tim's Tips for Children and Teens with Thyroid Cancer
Noah's StoryBy Lindy R., his mother, January 2006
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 is 13 years old, a seventh grader, baseball player, actor, skateboarder, and gifted student. He's always easy going, confident, and an absolute joy to be around. I never in a million years would have imagined my baby could get cancer.
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.
He was diagnosed with papillary thyroid carcinoma with a follicular variant in October 2005. I had to have the doctor write down the diagnosis on a piece of paper as I had never heard of it and couldn't even come close to spelling it even though I'm an R.N. (I work with newborns).
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.
We have since traveled to MD Anderson Cancer Center to see a pediatric thyroid cancer specialist (ok to name …). Noah's neck ultrasound was encouraging. No more suspicious lymph nodes were seen. We'll go back there in July 2006 for another scan and neck ultrasound.
Noah has recently been increased from 125 mcg levothyroxine to 137 mcg after his TSH (thyroid stimulating hormone) level was still at 4. Noah's been back in school, has lots of energy, skateboards every day, and walks a couple miles home from school on occasion because he doesn't like the bus. He says he LOVES 7th grade and has been cast as Charlie in Charlie and the Chocolate Factory....the school play this spring!! Noah and his friends like to joke about his scar....shark attack, bar fight, etc... :) KIDS!!
Our lives have been changed forever. We are living happier and healthier then we ever have before. Cancer is always in the back of my mind, but our lives are good right now and we are thankful for everyday.
Well, that's our story as of today.........to be continued....
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Joshua's StoryBy Viki B., his mother, February 2006
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.
Back in 1986, his father and I, who were 24 and 17 at the time, were exposed to Chernobyl radiation that swept Eastern Europe, Ukraine, and Belarus. We were not given any information on how to take preventive measure to avoid the effects of the radiation they were exposed to.
Joshua's older brother was born in 1990 in West Germany in perfect health. A year later his other brother David was born with a clubfoot. In 1992 Josh was born with two clubfeet. At that time, since there was no family history of this kind of condition, the doctors were positive that the radiation from Chernobyl was the cause for the kids' problem. In attempts to have a couple of surgeries done to correct his feet, Joshua's poor health prolonged the time it took. He was exposed to X-Ray multiple times, not only for his feet, but also for his thymus gland, which was a bit enlarged.
In 1995, our family relocated to South Africa, where Joshua had his last 2 surgeries to correct his feet completely. He had more X-Rays at that time.
In 1997, our family moved from South Africa to New Mexico. Joshua was a pretty healthy kid for a few years. In December 2004, his grandmother noticed a lump on his left side of the neck. We took him to the family doctor. He was treated with an antibiotic for about 2 weeks, after which he was sent to an ENT specialist. After a month of being on antibiotic again for bacterial infection, the ENT ordered a fine needle aspiration test (FNA). The results were not good. The ENT advised us that he wanted more tests done, before recommending the next step in testing.
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.
For Joshua's sake I had to stay positive. Telling my family was the hardest thing to do that night. Joshua's oldest brother John came to us and sat in the car as soon as we parked it in the garage. He couldn't wait to hear what Joshua had. He was begging that I tell him it was not the "bad thing."
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.
In February 2005, Josh had a complete thyroidectomy. The surgery took about 6 1/2 hours. His surgeon, Dr. Quinatana, took the time and made an enormous effort to assure that she cleaned Joshua's neck to the best of her abilities. She removed 55 lymph nodes, 5 of which were cancerous. The pathology report showed that this was indeed papillary carcinoma.
I will never forget the help I was offered from a woman whom I never met in my life. She (first name?) was a friend of a colleague of mine. Her husband had been a thyroid cancer survivor for about 5 years. She knew what we were to go through. She wrote me a four-page e-mail to give me a step-by-step of what was to come. She also told me about the www.thyca.org web site, where I found all I needed to know about my kid's condition, treatments and prognosis.
I know how important it is to get as much information as you can. I know how scary it can be just to hear the "C" word when you get your diagnosis from the doctor, especially when the diagnosis is for your young child. I want to offer my help to others who are going through the valley of shadows and to show them that there is a light at the end of the tunnel and there is where we should have our eyes focused on.
To other parents here are my 2 cents: Don't be afraid. Be bold. Do not be afraid to ask many questions. After all, no one expects you to know as much as the doctors do. Become an expert on your child's condition. Knowledge is your weapon. Take steps to find the best doctor possible. And last but most important, don't lose hope.
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A Mother's Viewby Lauri H., Illinois, Spring 2005. Reprinted from ThyCa Journeys, Spring 2005. (http://www.thyca.org/news/journeysspring05/)
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.
As we tucked Travis in that night, I recalled the day we brought this sweet boy of ours into this world. His name means "traveler of the crossroads" and he was living up to that as well. It was time to wait out one of the longest nights of John's and my life.
We proceeded to schedule the next surgery. "Thyroidectomy." Boy, I was rapidly increasing my word power: Papillary Carcinoma, Thyroidectomy, Ablation, etc.
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.
Travis has been very optimistic and mature in dealing with his diagnosis. We are so proud of how brave and courageous he's been.
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.
There have been many kind and caring people who decided to come alongside us, just to ease our journey, like the young soccer coach in town who took it upon himself and organized a fundraiser (with help from his soccer kids) to assist us in paying for medical bills.
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 Journeyby Melissa L., Katie's mother, September 2006
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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Abi's StoryBy Michelle B., her mother, July 2021
Michelle will never forget the moment she had to break the news to daughter Abi that at 12-years-old she had cancer.
“Abi was diagnosed with advanced papillary thyroid cancer in February, a rare form of childhood cancer. We were informed by the surgeon at the hospital following a biopsy, with Abi waiting in the hall outside the door. It was like an outer-body experience at the time: we had to walk out the door, look at her and pretend everything was ok. It was incredibly hard,” recalled mum-of-three Michelle.
“That evening we rang the Irish Cancer Society Support Line for advice on how to tell our child she had cancer. The nurse advised us that given her age, it was best just to be honest and tell her the truth. So we sat her down and told her
“I remember her first few questions were ‘am I going to die?’ and ‘will I lose my hair?’. I’m so glad we were prepared, as we could tell her that there is a very positive outcome for thyroid cancer in a lot of cases. I said ‘Abi, you’re not going to lose your hair, but if you ever did then mammy will shave it off too’.”
The family’s dramatic journey all started last November when Abi found a lump on her neck just weeks after starting secondary school. Having initially thought it was a swollen gland, Michelle became concerned on Christmas Day when she noticed it had grown larger, and so sought to get it checked out as soon as possible afterwards.
That set in train a whirlwind of GP visits, tests, scans and the biopsy before receiving the dreaded diagnosis in February.
From there Abi underwent major surgery to remove her thyroid and 46 lymph nodes from her neck. Having come through that ordeal, she was due to start radioactive iodine therapy eight weeks later to target areas left behind by the surgery when the Covid-19 pandemic struck.
Due to covid her treatment was put on hold. That was a really stressful time, but thankfully in June we got the call to say we were good to go and she began her treatment.
The radiation involved in Abi’s week-long therapy meant she had to undergo it in isolation. This was incredibly difficult for both her and her family to take, but Michelle is thankful Abi could count on the protection of a very important guardian throughout.
“The day she went in for her surgery she took her teddy bear Scampi in to mind her, and he hasn’t left her side since: so much so that our local butcher vacuum-packed Scampi to go into isolation with her so that she could take him home again.”
Since her treatment Abi has turned teenager and gone back to school.
However, she will be on medication for the rest of her life to replace the function of her thyroid, and her family constantly worries about the need to balance the wellbeing of a normal teen with the necessary caution for someone who has just undergone cancer treatment, especially given the risk posed by covid.
Michelle hopes sharing their story will help others: “I want the world to know how proud of our daughter we are, she is a true warrior princess. Abi wants the world to be aware of the young children who battle on a daily basis with the different types of cancer that attack their little bodies.
“Not all lumps are harmful, but it’s always better to be safe than sorry.”