Gillian Okimoto is an OsteoWarrior and member of the MIB Agents Junior Advisory Board, and her dad Kyle is running the NYC marathon this month to raise money for MIB Agents to support osteosarcoma programs, education, and research #Because of Gillian and #Because of Ally. We asked the Okimotos to share their osteosarcoma story, the inspiration behind Kyle’s fundraiser, and with the benefit of hindsight, their tips and advice for other osteosarcoma families.
Gillian, can you share your osteosarcoma story with us? How were you diagnosed, what was your treatment, and what kind of surgery did you have?
I was diagnosed with osteosarcoma in December of 2017, when I was eleven years old. I did MAP chemotherapy and underwent a process called distraction osteogenesis, which was able to regrow the gap in my bone. After 9 months of chemotherapy and 9 surgeries, I am five years NED.
Gillian, what advice/tips would you give to newly diagnosed Osteosarcoma Warriors to help them get through the first year of treatment?
Keeping spirits up is tough, but know that you don't always have to put on a brave face. Don't be afraid to rely on your loved ones during this time, and make sure your needs are known. Find some good things to watch—and rewatch your favorite comfort shows and movies. I highly recommend a good episode of Gilmore Girls or Great British Baking Show combined with a cup of hot cocoa.
Stacy and Kyle, likewise, what advice/tips would you give to caregivers?
Figure out ways for your child to maintain some connection to their pre-diagnosis life. We were fortunate to have access to a VGo robot, so Gillian was able to attend school through it. Beyond that, when Gillian was able, we were able to have friends visit us here at home.
Keep one small notebook to log things that happen. You are thrown numbers and stats, information and instructions. It’s easy if you know you’re keeping it all in one place. Note random things like funny things you’ve overheard or nice things that nurses do for your child. Names of volunteers you want to remember. You’ll be surprised not only how useful it is but the fond memories you will capture later.
Identify ways for people to help you that will really help you. We live in New York City, so there were several families who drove us to the hospital regularly. If your child has siblings, figure out which friends and parents can be relied on to spend time with your other children when you can't. Pick out a set of meals and restaurants that you like when people want to send you food.
Observe what's going on in the hospital. Make note of the daily schedule. Determine which nurses and nurses' assistants can be relied on to go above and beyond. Learn a little about their lives, their interests and food or treats they like and you can bring them something they love occasionally.
Try not to be disappointed in how some friends and family will respond. Rather, we started to make note of people who surprised and delighted us in unexpected ways.
If you are able, reduce your work commitments as much as possible. If you can't, make tentative plans to determine how you, your partner, other family members or friends will juggle caregiving and other responsibilities.
Stacy and Kyle, a cancer diagnosis can be especially difficult for siblings. With the benefit of hindsight, do you have any advice for parents and siblings on how to be present for your other children/help them process this huge upheaval in the family routine and dynamics?
We were fortunate that our other daughter Allison, who is two years older than Gillian, was active in supporting Gillian through this experience. She visited Gillian as frequently as possible during each of Gillian's inpatient chemo treatments and surgeries. But more importantly the two of them had dedicated "sister bonding time" throughout the months of that experience. Much of what they did to bond remains a mystery to us!
We took turns to stay with Gillian in the hospital and remain with Allison at home. While we don't want to go back to that time, 1-on-1 time with each daughter was precious.
For Kyle, watching football with Gillian in the hospital bed and watching her go to school through her robot and driving Allison up to summer camp in Vermont were occasions when he could be present for each of them.
For Stacy, she fondly remembers splitting a donut from the hospital cafeteria with Gillian once every stay, and simply holding Allison quietly in the cab ride home from the hospital at night after dinner.
A big challenge was being able to find time for us as a couple. After our focus on each child and supporting Gillian physically, simply managing day-to-day logistics was a struggle. We are still catching up on our time together and it's over 5 years since Gillian completed chemo!
For each of you, what help/support did you receive from family/friends during treatment that was the most helpful for you?
[Gillian] My greatest support during my treatment was my sister—unlike my parents or friends, she knew how to handle my needs while also making me feel as "normal" as possible. She would watch movies with me in the hospital or at home, paint my nails, and read our favorite books to me.
[Kyle] Friends and family members who just came over and hung out with us were most helpful. Just getting away from the rigors of care was a welcome relief.
[Stacy] My sister-in-law was simply incredible. She must have kept notes about our entire schedule or she has an amazing memory. She knew when we were going to the hospital and every test result we were waiting for. She texted me each time to offer support and hope. She taught me how to offer support to others from a long distance.
Gillian, you are now five years NED and a member of the MIB Agents Junior Advisory Board. What made you want to lean into the osteosarcoma community even more versus put this traumatic experience behind you? What have been some of your more meaningful and/or memorable experiences as a JAB member?
Unlike some other people in the OS community that I've met, I would hate going into a medical field. For a long time I wanted to be as separate from cancer as I could possibly be. But after meeting Ally Tamayose and her family, I would often be really inspired by how much she was contributing to the community. The Tamayoses have been wonderful friends to my family, and I joined the Junior Advisory Board for Ally. While I will forever wish that I was able to be closer with her, I'm doing my best to #LiveLikeAlly and continue the fight for her.
Kyle, you are running the NYC Marathon on November 5th to raise money for MIB Agents to support osteosarcoma programs, education, and research. What inspired you to do this?
I see running a marathon as a vehicle to raise funds and awareness for causes I want to support. I've run marathons for orphanages and veterans' causes in the past. I don't always run every marathon for charity (I've run over 30 since 2003) but having observed MIB in action during their FACTOR conference this summer, I felt that it was important for me to run this year's NYC Marathon for MIB Agents. To raise funds and increase awareness for MIB. To honor MIB Warriors and Angels. And to #LiveLikeAlly.