September Pediatric Cancer Awareness Posts

(Copied from Facebook)

During September, which is Pediatric Cancer Awareness Month, I shared information about pediatric cancer daily on Facebook, along with some personal accounts, which I copy here.

Day 2: Thomas's cancer was caused by uncontrolled multiplication of his neural crest cells. This is why neuroblastoma is seen almost entirely in children ages five and younger, and babies can even be born with it.

Day 6: The tests that all seem "old hat" to us now were very frightening in the days Thomas was being diagnosed. When I took him to his pediatrician on a Thursday to feel a lump in his belly, they took many vials of blood. Sadly, I don't even have sympathy any more about kids getting blood draws, but I can hearken back to the feeling of my precious four-year-old who had never felt a needle in his arm. Then Thomas had to fast all day for an hourlong ultrasound where hundreds of images were taken and the tech told me "your doctor will be calling you tonight" (which he did: at 7:00 p.m.). By the next morning, Friday, we were in front of a urologist for a preliminary (incorrect) diagnosis of Wilm's tumor. On Monday morning, we arrived at 8:00 a.m. for a CT scan, and as we walked out of it, I received a call on my cell phone saying our follow-up appointment with the urologist had been cancelled and instead we were to walk over right away to meet the head pediatric oncologist. He informed us that imaging showed neuroblastoma. Thomas had his first Oncology Clinic appointment that Wednesday (more bloodwork plus an important urine test used with neuroblastoma) and on Thursday his first MIBG scan under general anesthesia--on the eighth day after the lump was first examined. We then met Thomas's surgeon on Monday to plan for his Tuesday open abdominal biopsy, bone marrow biopsy, and to have a port placed in his chest for chemotherapy. It was a whirlwind.

Day 7: In Thomas's case, we actually did not learn much about treatment choices because his type of neuroblastoma has a set protocol of treatment without much variance. The kids who have High-Risk Neuroblastoma (which involves various factors, including genetic ones determined at biopsy) face many more treatment options that their parents, in concert with their doctors, must decide about, which is a heavy intellectual and emotional burden. Different hospitals around the country and the world follow entirely different protocols for high-risk neuroblastoma, so parents end up researching them all and sometimes expressing differing opinions with their local doctors, that they want to go on various different paths. Thomas was supposed to proceed ahead to radiation after his tumor resection surgery, but after everything went south, his oncologist met with us in our PICU room and said Thomas's body was now too damaged to proceed with cancer treatment, "So you need to pray that the surgeon got all the cancer out." Cold comfort, indeed.

Day 8: Thomas was never "supposed" to have his particular tumor resection surgery because it was "too highly morbid." However, when his tumor was resistant to chemotherapy, there was no direction to go but to fall forward. We were told by the team to expect about a five-day, post-op stay . . . and 132 days later, Thomas was discharged home. I'll end my words there because my thoughts and feelings on the matter would fill a book.

Day 9: It's very strange to consider, but everything can be compared, and Thomas's months of chemotherapy were far easier than his other months--but certainly no picnic. It was like having a kid sick with a stomach bug for two out of every three weeks for four months. The infusion nurses are fabulous and Child Life brings in a lot of entertainment and interaction.

Thomas's signs were very few. Within about one week before I found his lump, I noticed his belly was distended. I wondered if he had moved beyond being my chunkiest preschooler ever (but normal) to actually overweight, and I made a mental note to ask about it at his next well-child check (one month in the future). That week, he began sweating profusely, especially at night, soaking his pillow cases, and I did notice but I thought it was because it was June and seriously warming up here in the South. Then there was that one day I was tickling him and felt the lump in his belly. It turned out it was already the size of a softball and the oncologist estimated it had taken only 3-6 weeks to grow, although none of us will ever know.

Day 11: Parents (and children) can NEVER "let cancer be all behind them." Some of the below listed are side effects in the present during treatment while some are called "late effects." Parents (and children old enough to know) get to watch and wait for years to see if the late effects while express themselves. We won't know if Thomas's adult teeth were damaged till they have all emerged. We won't know the state of his puberty or fertility. His hearing is damaged and that will require annual monitoring. (And then there are the ongoing problems as an offshoot of the resection surgery, like annual DEXA scans to watch for osteoporosis.)

Day 12: Thomas was on low-dose steroids while taking chemotherapy, but then he was on mega steroids for the entire 4.5 months in the hospital. Steroids must be weaned exceedingly slowly, so it took months at home before he was done with them. Steroids are why Thomas, and other sick children you may see, are very puffy (called "moon face") and hairy (hirsutism: having hair in inappropriate places).

Day 14: Thomas had a central line, specifically a port-a-cath (a "port"). We loved having a port! Thomas experienced only three pokes per month while conscious during his entire treatment. (While he had about ten lines in him during his PICU time, he was also not conscious.)  After Thomas had his port removed, he had to become accustomed to having blood draws rather often! Now he is a *total* pro. We don't use EMLA cream or the air-puff thingy or a "Buzzy Bee." (I wish I were as calm as he is about blood draws!)

Day 15: Thomas has been N.E.D. for 18 months (and out of treatment for 21 months)! His next scans are planned for January, four months from now.

Day 16: Thomas's type of neuroblastoma was called "intermediate risk" because his tumor did not have certain genetic mutations and it had not metastasized, therefore his was treated with a well-established protocol. Therefore, we did not learn details about the treatment choices for high-risk neuroblastoma because we were told those would never pertain to Thomas. Now, when his tumor was entirely chemo-resistant after four rounds, they did switch us to the high-risk chemo protocol for two more rounds (to which the tumor was still resistant!), but we never did radiation, immunotherapy, stem cell transplant, vaccination, DFMO, etc. Only after Thomas's chapter closed, have I had enough time and emotional space to learn on the Neuroblastoma Facebook page a lot about the high-risk protocol treatments: frankly, they are horrific, but they are what save as many of those children as possible.

Day 17: We explained from the beginning, when Thomas was almost five years old, how cancer is caused and not caused, and specifically that it was not his fault. We have since learned that explanations need to be given every few months (for years!) because little kids forget things easily. Therefore, you can imagine my heart getting torn out of my chest in September 2021 when Thomas asked me from the back seat why he got cancer and not David. Questioning revealed that he, then at newly six years old, thought cancer came from germs and that he must not have washed his hands well enough . . . but he knew that his two years' younger brother definitely did not wash his hands well, so why did David not get cancer? It was also in this conversation that Thomas revealed innocently that he thought *all* children catch cancer at some point and go through what he went through. When I explained how rare childhood cancer is, he got upset for one of the first times ever. This car-ride conversation occurred on our way late to catch an airplane, so I could not even pull over on the roadside to console my confused little boy, so I just cried as I drove along and explained as best as I could.

Day 19: Ninety-three. 

Thomas received ninety three blood transfusions, almost every last one of those during a four-week period in PICU because that is how long his body was bleeding out. Without blood donations, he probably would have died on any one of those days from simply bleeding to death.

Blood is not plentiful and blood expires fairly quickly. One day right around Christmas--when donations are always low because people are understandably busy--there was no more blood available at Levine Children's Hospital here in this metro region of 2.6 million people. After searching diligently, the hospital found one unit at another local hospital and somebody drove it over in their car so Thomas could have a transfusion and survive another day.

My husband is currently making it a project to try to donate 93 units over the course of the rest of his life.

Thomas might tell you, "I was born with my cancer!" which is confusing since he was diagnosed with the one-pound tumor at age four. His wording is because neuroblastoma "is often present at birth, but is not detected until it begins to grow." Even I cannot wrap my mind around cancer cells lying in quiescence. Doctors do not yet know why neuroblastoma cancer cells lying in quiescence awaken and begin growing out of control.

Based on Thomas's initial ultrasound, he was misdiagnosed with Wilms' tumor (survival rate of 93%), which we thought from Thursday night till his CT scan on Monday morning, when we learned he had neuroblastoma (which has a survival rate as low as 50% if high-risk, and we didn't yet know what risk level he was).

Our family was given so much more community support than many families going through pediatric cancer. It was a great reminder to me the value of ALREADY BELONGING to a strong community--ideally religious, but even coworkers, a bowling league, a volunteer organization--before tragedy ever strikes. We are so grateful to the nightly meals for so many months, the monetary donations, the children's gifts, hosting Thanksgiving and Christmas for us (who just showed up bleary eyed and numb), the rides to events for our children, the visits even though I know it felt scary/uncomfortable for others, and the prayers.