September is Childhood Cancer Awareness Month and we wanted to introduce you to Matt and his family.
Matt is an energetic 8 year old that has been part of the GiGi’s Playhouse family for the entire time we’ve been in existence. His smile and personality light up a room. He’s the youngest of 4 siblings in his family and always keeps his family on their toes.
In November 2019, when Matt was just 5 years old, he started not feeling well and was having insomnia. He had just started Kindergarten so catching colds and other viruses was not uncommon and kids with a Down syndrome diagnosis also have higher rates of insomnia and sleep issues in general. After awhile when he kept getting sick and not getting better with antibiotics his mom, Nanette, knew something wasn’t right.
They took Matt to the doctor where chest X-ray’s and lab work were done and both Oncology and Hematology doctors were called. The doctors said ‘what we’re seeing could either be a virus, like Mono, or Leukemia’. For a diagnosis to be officially made Matt had to endure more invasive testing which was sent off to a lab. When the results came back the doctors had to look really hard to see the cells that ended up being the Acute Lymphoblastic Leukemia (ALL) diagnosis.
Matt and his family received the diagnosis on a Sunday and his treatment began on Monday, the very next day. His frontline (first) treatment happened during a 23 day hospital stay at American Family Children’s Hospital in Madison. Their care team was amazing but hospital stays are never easy. People with Down syndrome are more susceptible to infection so his care team was very cautions while treating him. Matt reached remission by the end of his first month of treatment.
Due to his initial remission, Matt’s treatment was considered ‘’favorable risk’. To be considered ‘cured’ of ALL you must reach remission and then continue 2 ½ years of chemotherapy. Doctors continually adjust meds and treatments to battle this disease. The most intensive treatment occurs in the first few months and during a later stage referred to as ‘Delayed Intensification or DI’. Halfway through ‘DI’ Matt started losing his hair.
Matt began the last stage of treatment, Maintenance, in July 2020 which included taking oral chemotherapy every day at home and every 12 weeks receives a lumbar puncture and had the drug Methotrexate administered into his spinal fluid. Leukemia tends to ‘hide’ in the spine. Chemo of course causes many side effects, so he also was taking additional drugs to help with nausea and mucositis.
Matthew took his last dose of chemo on January 22, 2022!
The time between the initial diagnosis and treatment was very quick and receiving this kind of news affects the entire family. While the diagnosis happened pre-COVID visitors were still limited due to a risk of infection so Matt’s Mom and Dad would take turns staying with him- Mom during the week and Dad on the weekends. Matt’s three siblings all were at home and the family separation was incredibly difficult on everyone. Thankfully, they visited on weekends. During Spring 2021 COVID protocols were in place so the family had to keep in touch through Facetime. They are a tightknit family and their love helped them all through this very difficult time and even brought them closer. They also found support from outside their walls. During the first line treatment Matt’s Aunt, who didn’t live in the area, dropped everything to come help where she could, friends from GiGi’s Playhouse came to the hospital and friends from their church organized a meal train. In Spring 2021 teachers from his school organized another meal train.
If you know someone going through a difficult time, Nanette shared the following advice on how to be of help because so many people say ‘let me know what you need’. The family needing help likely won’t reach out because they’re navigating their difficult situation and don’t have time for anything but the immediate family needs.
- Offer to clean the house
- Offer to do their laundry
- Go grocery shopping and drop it off at their home
- Have food delivered to the hospital
- Give some comfort items for the family staying with their child in the hospital (a fuzzy blanket can make a hospital room feel cozy)
- Think of the whole family- while one person may be receiving the treatment the entire family is going through it together
- DON’T tell someone that their child has a ‘good’ type of cancer
Nanette shared that it’s ‘incredibly difficult to see your child go through so much pain and not be able to do anything’. Her faith helps her to cope and believes that ‘God prepared me for this’ through random meetings and discussions with strangers right before his diagnosis.
We are so thankful Matt’s family shared his story with us and we hope this shined some light on what it means to have a child with a cancer diagnosis.