In the last four years, there have been appointments, consultations, treatments and recoveries. Hopeful days and horrific days. As a result of her treatment, Avery, now almost 6, has special needs including vision and hearing loss, walking with the aid of a walker and braces, verbal and cognitive delays and bladder spasms. Her latest scans are stable but revealed a hemorrhagic bleed in her brain stem – an expected result of radiation and chemotherapy. There is no surgery to fix it due to its location so there are risks of stroke, paralysis, seizures and death.
While Avery was initially treated at Children’s Mercy, she was quickly referred to St. Jude’s Children’s Research Hospital in Memphis, Tenn.
When Avery was first diagnosed, what kept you going?
“In the first few weeks, we really didn’t understand the gravity of the situation. I mean cancer is bad – but they don’t come right out and say to you “hey your kid is too young for the treatments that might have any chance of working, so yeah basically your prognosis is 25% survival rate of five years.” Instead we got bombarded by surgeons, nurses, oncologists, therapists, and every resident telling us what to do and when. What kept us going was not realizing we had an option not to.
What has been the most helpful support you’ve received?
“Helpful support has been finding a team of doctors who included us in the team. We found out very quickly that the only common thread in all of the care is her and us. And since she couldn’t talk for herself, it became our job to do it for her.
“We found out that no matter what degree you have or how many years you had been fighting cancer, the only person that knows everything about Avery was us as her parents. We made it our mission to make sure we did our jobs well and were part of the team fighting to make her better. A doctor might know how to treat the symptom, but I am the one that figures out what that symptom is – what’s out of the norm for her and something we need to investigate. St. Jude’s – hands down – understands this better than any hospital out there – and believe me we have been to many across the country.
“We have had an amazing out pouring from family and friends and even strangers! They have cleaned our house, taken in our dogs, picked up Avery from rehab, arranged meals, sent us on dates and stood by us for almost five years. I wouldn’t trade our support system for the world.”
How does St. Jude continue to support Avery and your family?
“We are still followed by St. Jude’s and refer to them for all care. We make the trip to Memphis every four months for scans along with check-ups in every department. St. Jude’s has daily activities and is always buzzing with something going on. Avery loves going to St. Jude’s and begs to go.”
What have been your biggest sacrifices as a mother?
“NORMAL. The days of married with 2.5 kids and a dog are out the door. I will never be a normal mom. Avery will most likely always live with us. She will probably never date, get married or have kids of her own. I won’t have a moody teenager or teach her to ride her bike. I will never be a grandmother to her children. My life stages will never not include her again. Being a parent to a special needs child is a challenge, but one I wouldn’t give up.”
Why is the Walk for St. Jude’s important to your family. How can other moms help?
“There are a lot of walks out there for childhood cancer, brain cancer and for local oncology groups. We try to attend as many as possible. But we ask friends to join us specifically for the St. Jude’s Walk because it’s the one way we can honor Avery and all her fighting friends and angels, bring awareness, and support the place that has made sure we received the very best care that encompassed not only our sick child, but our whole family.
“The day before Avery was diagnosed; I was a normal mom too. We walk to honor the fight, remember the angels and so that someday (with St. Jude’s help), we won’t have to.”
To read more about Avery’s story, visit her blog.
To donate to the Kansas City Moms Blog’s St. Jude Walk team or join the walk, visit our team page.