We went to Florida for a wedding and Emma had not been acting herself. She slept the whole drive there, not like her at all. She wouldn’t eat and her belly felt very hard. We took Emma to Sacred Heart in Pensacola and within 4 hours they told us it was probably Neuroblastoma. Emma needed a platelet and blood transfusion, and we were inpatient there for two days. Then an ambulance ride from Pensacola, FL to Baton Rouge, LA. We were inpatient there for a month, Emma deteriorated quickly.
Finally, they decided to start chemo while waiting for results from the biopsy. Emma responded very well to 1sr round of chemo. We were able to go home for a few days. We then traveled to St. Jude, where we lived for nearly 1.5 years.
Emma went through 12 rounds of chemo with antibodies, 2 stem cell transplants, 12 rounds of radiation, numerous blood and platelet transfusions. Emma had some rough patches throughout treatment but overall she did great! She is an amazing and strong girl!
We also adopted Emma’s full brother right in the middle of her treatments, but we made it through and wouldn’t change a thing.
Penelope just turned one recently and she’s been through a lot. Her symptoms started at 6 months with constipation which is a very common symptom in a 6-month-old. As the next few months progressed her constipation came and went and then other symptoms started to emerge (clenching her rear end, wincing when laid down, fussiness, personality changes, gross motor delay) and eventually presented itself as excessive sleeping, little to no appetite and then listlessness in her lower extremities. She was diagnosed on November 9, 2020, with neuroblastoma.
The day I took Penelope to the ER, which turned into her surgery stay, diagnosis, and first treatment, we had a family photo session scheduled for the holidays. Even though Penelope seemed a bit off that morning, we still went. The entire time we were there she was miserable and I couldn’t figure out why. We couldn’t get her to smile, she wouldn’t sit with her brother, she wouldn’t stop fussing and crying which is so unlike her. We ended up going home early. I was so bummed and also so worried about P, however, I had no idea what the next days were going to bring. Those are the only professional pictures I have of Penelope and the most recent ones of my son. They are also the only professional pictures I have of the four of us and I have yet to be able to bring myself to look at them. My daughter has come a long way since then and our family has been through hell. I really just want to be able to capture some nice pictures of my kids and my husband and me so that we have something beautiful to cherish during this time.
Sophie loves the Keyes brothers on YouTube. She also loves science, space, Egyptology, shark week, and unearthed. She is very smart and inquisitive.
Sophie was diagnosed with Stage IV Neuroblastoma in November of 2019 after having gastrointestinal issues. Sophie has received chemo, radiation, 2 bone marrow transplants, and immunotherapy as part of her treatment protocol. She is also in PT for stamina and strength training. Unfortunately, Covid combined with cancer treatment has limited our ability to go out and interact socially.
Sophie has been through so much pain and yet her beautiful personality and positive attitude haven’t changed. She can’t wait to start school in person again in September. She wants her hair to grow back so she can color it purple.
Hope Session by Elaine Janet Photography | Facebook
In May of 2019, our hearts broke when we heard the words no parent should ever hear, “Your baby has cancer.” What started as a routine 4-month pediatrician appointment where I casually mentioned her bloated belly (that many had dismissed as normal) ended with us being admitted to the pediatric oncology unit at Johns Hopkins.
After weeks of waiting, we were given the news of her Stage 4S Neuroblastoma diagnosis – one so rare in which the cancer would go away on its own without any intervention or treatment. Her body would essentially do naturally what chemo is created to do. We were elated!
Two years later, we announced it had been 2 years since Zoey’s original cancer diagnosis and how fortunate we were that Zoey was spared having to go through treatments and that she got to live a normal happy life as a rambunctious toddler. We put on her signature F-Cancer shirts and celebrated her cancerversary.
In June, our hearts broke all over again when we heard the words no parent of a child whose cancer had been curing itself for over 2 years should ever hear… “The CT scan results came back… They show a progression of the cancer.” Cancer had said F you right back.
Because the cancer cells had spread from her liver to her rib, her new diagnosis is Stage 4 High-Risk Neuroblastoma, and she has to undergo an extremely aggressive treatment protocol which consists of 5 rounds of chemo, 2 rounds of stem cell transplant therapy, 6 rounds of radiation, and 6 rounds of immunotherapy which will last anywhere from 13-18 months. It has been hard seeing our beautiful little girl go through such toxic treatments, but she has astonished us with her strength and resilience. Even when Zoey is feeling her worst, she still manages to give us the biggest, most contagious cheeses and make us laugh through our tears with her goofy personality.
Over the past 1.5 years, I started a bow shop called Zoey’s Boweys where I donate a portion of profits to pediatric cancer research. To date, we have donated over $20,000.
Charlotte is a spirited, cheerful, fearless, and strong-willed little girl. When she was born we remember the nurse saying that she was “tiny but mighty,” and boy has that ever proven to be true! She loves dolls and babies, animals, riding her scooter, reading books, coloring, and being outside. Charlotte looks up to her big brother, Finn, and likes to imitate and play with him. She loves to do things independently (typical almost 3-year-old), but also loved to snuggle and be held.
Charlotte was 22 months old when everything changed. She had hit all of her developmental milestones at age-appropriate times and was a delightful toddler. On July 16, 2019, she woke up and her daddy got her from her crib. He described her as feeling like her abdominal muscles felt tight and when he took her to push the button on the coffee maker, as usual, she suddenly lacked the coordination to do this. She would fall out of nowhere when walking around and had some erratic eye movements. We took her to the emergency department at Mott Children’s Hospital in Ann Arbor, Michigan where a comprehensive series of tests were done over the next two days. There was blood work, a full-body MRI, a lumbar puncture, and an EEG among others to assess the sudden onset of Charlotte’s symptoms. The results were all negative, and she left the ED with a diagnosis of Acute Viral Cerebellar Ataxia. We were told that Charlotte’s symptoms would most likely worsen before she began to recover, but that slowly she would recover and return to normal. Pretty quickly after returning home, Charlotte’s strength and coordination worsened and she got to the point where she could no longer walk without falling and could barely sit independently. During a follow-up appointment with oncology, it was suggested that she have another test done (MIBG scan and then another MRI) due to elevated levels in her urine. It turned out that Charlotte did have neuroblastoma located near her tailbone, an area of her body that the initial MRI had not detected. Because of Charlotte’s case, Mott hospital has now changed its protocol for future patients who are admitted with similar symptoms.
We met with the pediatric surgeon who confidently explained the procedure. Happily, the surgery was quite successful and the surgeon was able to excise the entire tumor. The pathology report was also very good. We were told that she would be “better than when she came in” and would need routine follow-up appointments. We left with feelings of relief and gratefulness.
After the surgery, Charlotte worked hard to improve her physical skills. She also had some behavioral challenges, some of which could probably be attributed to her frustration and lack of indolence (but also characteristic of OMS). We had also noticed a decline in her verbal abilities and it was advised that we contact early interventionists in speech/language, physical, and occupational therapies to assess Charlotte. Based on their observations and information from us, she did not qualify for their services. However, as she struggled to walk without falling and often resorted to crawling, we decided to start physical therapy. This did not go well! She resisted the activities and after a few times, we decided it was counterproductive at this time.
Two days before Christmas, we had another follow-up appointment with the pediatric neurologist. The news she presented was devastating. She said that Charlotte has a syndrome called OMS (Opsoclonus-Myoclonus Syndrome,) an extremely rare condition. OMS is related to neuroblastoma but is now a separate issue and has to be treated (even though her tumor was removed successfully). Family members began the careful and rigorous process of researching this diagnosis. We decided to travel to Boston’s Children’s Hospital to seek guidance from Dr. Mark Gorman, a known expert in treating this rare syndrome. He would advise the doctors at the University of Michigan and Charlotte would begin an aggressive treatment for OMS at Mott, including Rituximab infusions (a chemo medication that was given in four doses), IVIG infusions, and Dexamethasone steroid. Charlotte continued to get monthly infusions of IVIG as well as steroids every month.
She will have to continue with monthly IVIG infusions for at least two years and she will most likely get another dose of Rituximab once her B cells start to return. Charlotte will also continue to have follow-up MRIs (every three months right now). We routinely meet with her oncologists and neurologists at UM and Boston Children’s.
We are beyond thankful that our little girl is back to her spunky, fun-loving self! She has made tremendous progress and we have no doubt she will continue to learn and grow. We want to help support Charlotte to reach her potential, both physically and emotionally. We just want her to have access to all of the opportunities every child should be able to have growing up.
Charlotte is an incredibly brave and resilient girl. She is so joyful, snuggly, and loving. Her joyful and silly personality is infectious. Charlotte’s courage helped us get through an incredibly hard situation.
Eliot loves to laugh, his little brother makes him laugh a lot. At the same time, he is very responsible, cautious, smart, funny, and has a gear sense of humor. He loves art, we used to spend hours doing arts and crafts in the hospital. He also loves Lego (because of the time spent in the hospital building them).
Eliot was diagnosed while we were spending a weekend in NYC and he started complaining about abdominal pain. After a night of no sleep, we took him to the ER and they found a mass during an ultrasound.
His cancer diagnosis and treatment have gone parallel with the pandemic. I (the mother of Eliot) had to stop working the moment they diagnosed him (as of now I haven’t been back to work yet). My husband is working remotely to protect our immunocompromised child. My younger son Samuel who is now 2.5 had to stop attending daycare (for economic and health risk reasons). We moved to a different place (from a more urban area to a more rural town), Eliot has missed a lot of school and he still does anytime we go out for treatment. Financially it’s been a struggle and emotionally we are constantly trying to learn how to deal with it.
Eliot has been so brave and resilient. He has undergone the harshest of treatments and still laughed. He is asking more and more about his disease and why all the painful immunotherapy he has been getting and why he continues to go to the hospital. We have always explained everything to him in an easy-to-understand language. He is bilingual (English and Spanish) and very bright.
