Our baby was diagnosed the day before thanksgiving in 2020 at 14 months old. He also had metastasized disease in his spine. He was in remission starting in July 2021 for 3 months when he was diagnosed with relapse in late October 2021. The brain tumor reoccurrence was not in the cerebellum like his original tumor and was in multiple spots in different parts of his brain.
He had continued tumor progression through relapse chemo and now that we know it is stable on scans as of May 2022 but showing signs of progression with symptoms. He is also starting not to tolerate chemo as well but is still too young for radiation. Our hope is radiation at 3 yrs old but it will depend on a lot of factors.
He has what’s known as group 3 medulloblastoma which is one of the less favorable sub-type groups. He has 3 shunts because of cancer, one for hydrocephalus one for subdural brain bleeds from the chemo, and one for direct brain chemo.
I was a full-time college student excepted to go to medical school and trying to finish my bachelor’s degree. I had to stop to care for Hudson. My husband had to take the entire treatment (8 months) off work because his needs were a two-parent at all times job, Now he takes time off but it’s less since they only do in-clinic chemo once every 2 weeks and the rest is home chemo. We had to send our oldest son, who is 11, to stay with family friends while we were in the hospital and when we travel from Spokane to Seattle Children’s Hospital. Luckily he goes to a small private school where they have been able to help him cope.
He has literally had cancer in his tiny body for every birthday he’s had, He turned 3 on September 8th and unfortunately will not be cancer free. He has been through so much!
Emersyn is radiant. She is so beautiful, compassionate, and friendly (although much more hesitant now). She’s curious about the world around her. She’s loving and generous and just…the best kid anyone could ever dream to know.
In early 2021, Emersyn complained of neck pain, which became nausea, lack of appetite, and lethargy over the span of two weeks and constant doctor appointments and ER visits.
On January 22, 2021, Emersyn had a CT scan that showed tumors everywhere. She immediately had surgery and chemo started the following week. We completed 5 rounds of high-dose chemo. In July and August, she completed 32 rounds of proton radiation. We are currently on a clinical trial to buy her more time.
I resigned from my teaching position and my husband left his position as well, although he returns in a few weeks. Due to COVID, the extended family just recently saw Emersyn face to face for the first time in easily 18 months.
Cancer has changed everything for us. Emersyn is an only child, so being immunocompromised has isolated her more than ever. Her trauma from the hospital has matured her but left her with emotions and struggles that we’re working on getting a therapist for. I sleep with Emersyn as she is connected to a feeding pump and the clinical trial drugs cause late-night emesis. We’ve leaned heavily on our community for support: groceries, money for gas/bills, yard work, anything, and everything to help us get through this.
She’s endured so much but there isn’t an end in sight. We received the news last week that anything we do now is not curative. We tried the one cure, and it didn’t work. So anything from here out just buys Emersyn time, which is devastating, but I am hopeful we have years, not days. Every day with her is precious.
Max loves to laugh – he loves singing and dancing – even in the hospital when we were inpatient for over a month. He also likes to be a little chef and help me cook in the kitchen, his specialty is baked apple cider donuts and chocolate chip cookies.
He was first diagnosed with Medulloblastoma in September of 2018. His first relapse was in November of 2019 and again in April 2021. Before diagnosis, his symptoms included poor balance and coordination, slow processing speed, poor memory, poor fine motor skills, right eye strabismus, and high-frequency hearing loss.
Maxime’s dad and I have been divorced since last year and with his relapse, I haven’t been able to go back to work full time so paying the bills has been a challenge. And with the amount of time he spends with treatment tests and doctor visits and therapy, it’s been a challenge to accommodate playdates to keep him socialized especially with the pandemic and being an only child – it’s been mostly just the 2 of us for the past 2 years. We have become more reliant on my mom, friends, and neighbors for help and support.
Kendric was diagnosed with Medulloblastoma at 3 years old in 2011. Medulloblastoma is a rapidly-growing tumor of the cerebellum — the lower, rear portion of the brain. He was having neck pains and then began vomiting when he woke up in the mornings.
When Kendric started vomiting every morning, After multiple visits to the doctor’s everyone thought it was “reflux”. Kendric’s parents had enough and demanded something to be done. Kendric was sent for a CT scan where it showed he had a brain tumor. The tumor was located on/near his brain stem.
Kendric and his mother, Erica, were flown from their hometown in Moncton, New Brunswick to Halifax, Nova Scotia to meet with a specialist at the IWK Health Centre on Monday, October 10, 2011. His father Mark and 8-month old brother Davis joined them in Halifax in what is turning out to be a very heart-wrenching time for their family.
While at the IWK, they were told the brain tumor was inoperable. This was a very difficult time for Mark & Erica. After further consultation, the medical staff decided that they would operate on Friday, October 14th. With a 50/50 chance, Kendric made it through 9.5-hour brain surgery. The sweet little boy showed his strength that day!!
The next day, the MRI showed that the doctors were able to remove all of the tumors from the brain. The next step was to complete the pathology to determine what type the tumor it was. Four days after the surgery, the results showed that it was malignant and called medulloblastoma. Kendric must now go through extensive chemotherapy and radiation treatment for the next 24 months, still staying at the IWK in Halifax, NS.. several hours drive from his home.
Since beginning treatment, he has had cognitive decline, memory issues, balance issues, hearing loss, hormone deficits, and pulmonary fibrosis.
Alice was diagnosed in October of 2016 with Medulloblastoma. She was having extreme headaches and an MRI revealed a brain tumor.
She has had a brain tumor resection, radiation, chemotherapy, and years of follow-up OT, PT, and specialist appointments. Her surgery caused some brain damage and she has some speech and balance issues.
We are celebrating her being a senior in high school and making it through these last 5 years. In just a year and a half, she will be considered a long-term survivor!
Ely was diagnosed with Medulloblastoma in September of 2014. Before his diagnosis, he was experiencing neck pain waking him from sleep, vomiting, and hallucinations.
He has had full resection of the tumor, a shunt placement, completed full brain and spine radiation for 6 weeks, and then high-dose chemotherapy. He cannot play contact sports due to the shunt placed in his brain as a result of damage from the tumor.
A cancer diagnosis, as many families know, changes the course of your life forever. He will have many long-term side effects. We are slowly adjusting to a “normal” life now that he isn’t in active treatment.
Ely is a superhero enduring things no child should have to go through. We are so thankful for the many organizations and people that helped us along the way.
