Why is Ronald McDonald House important to us?
I should give you some background about our situation.
As I thought about sharing our story, I had no idea how to start or how to explain it. It’s been such a long and complicated journey. I tried to figure out how many trips to Edmonton from Grande Prairie we’ve made and appointments we’ve had to go to and it’s impossible to count. My son’s medical files could fill a library.
It began when Jesse was five years old. For over ten years, two-thirds of Jesse’s life, we’ve been in a stressful, complicated, and challenging medical journey. And no part of it has gotten easier. My boys’ childhood has been stolen from him by an ugly disease, a growth in his brain no bigger than a nickel, and no matter how much I wish for it, he will never get that time back.
Jesse was a normal, healthy, active, life-loving five-year-old boy. However, in 2013 that all changed when we went to the hospital for his strange insatiable thirst and urination. That is when we found out he had an inoperable brain tumor wrapped around his pituitary stalk. I can’t even explain the shock and terror when you hear those words. And then we were told:
“He has a brain tumor and has to take medicine forever.”
We began MRIs every three months, then every two months, then they let us know the tumor was growing. That first year was rough; he had a spinal tap, water deprivation tests, MRIs, PET CT scans, and countless amounts of bloodwork.
Eventually we were told that Jesse needed brain surgery to biopsy the tumour.
The surgery took eight hours, only for the results to come back inconclusive. The surgery was for nothing, the damage brought no answers. Jesse faced it like a champ though and had a swift recovery. Hard to bear, but smooth sailing.
It was after this that we started using the Ronald McDonald House.
Our first experience there was unforgettable.
It was like walking out of your stressful life full of fear and worry and being wrapped in a warm, safe blanket that whispered in your ear, “everything will be okay”.
We started by using a Day Pass. We just needed to get out, take a break. Kenny and I plopped on the couch in the main room and fell fast asleep. We could hear other families walking by and the sound of kids talking and playing. Nobody disturbed us. They knew exactly how we felt. No judgment. When we woke, we filled our bellies and bags with food and left. It felt so weird! But the staff assured us to “take as much as you want, that’s why it’s there!”
Then in 2018 after yet another MRI, the results came back different, and the tumor grew.
They wanted to try surgery again, except this time it was more dangerous as Jesse had added complications.
Jesse, ever the warrior, easily agreed to the surgery that terrified me. The doctors were determined to make this worth it and they were successful. The medical team removed 60% of the tumor!
Unfortunately, it also left him with brain injury on his hypothalamus and frontal lobe. He was NOT the same boy when we woke up from that surgery. This time recovery wasn’t as quick and nowhere near as smooth. This time he was in the hospital for a month, he couldn’t talk, he couldn’t see. It was awful. The hardest thing I’ve ever been a part of, and I’ll tell you, I’ve been through some hard things in my life!
However, after six years we now knew what the tumor was: LCH, a rare type of cancer.
Our trips to Edmonton became more frequent and our stays at the Ronald McDonald House were always the highlight of the trip for Jesse. He’d take part in games and activities, have a comfortable place to nap, do crafts in the main room, and of course visit the Magic Room. It sounds terrible, but getting to visit other kids and families in similar situations almost makes a sick kid feel normal.
The staff at the Ronald McDonald House always go above and beyond to accommodate Jesse’s unique needs while we are there.
By 2020, Jesse had 12 different specialists. To name a few and impress you…. Oncology, Endocrinology, Psychology, Ophthalmology, Cardiology, Respirology, Gastroenterology. I got really good at the OLOGYs! And don’t forget about the PT, OT, ENT, GP, RDN Pediatrician, and Pain clinic! That’s actually 14!
As our appointments continued during Covid, the Ronald McDonald House stepped us to support us by offering discounts on hotels, and gas cards to get back and forth.
We’ve stayed at the Ronald McDonald House 11 times in the last 5 years for a total of 22 nights.
The Ronald McDonald House is like an oasis in a dark time, offering a comfortable place to relax, take a nap, have friendly conversation, and with meals available. It gives you a moment to forget where you are and why you are there. It gives you the ability to recharge.
When your child is in the hospital away from home, it is a blessing to have a place to call home. The Ronald McDonald House IS that home away from home.
What does a day at the Ronald McDonald House look like for us?
Jesse spends most of his time in the main area at the tables doing crafts and visiting with the other parents and kids while they are preparing their meals or eating the Home for Dinner meal. It is the best sound in the world hearing over the intercom, “Good evening families, dinner is ready, come on down and join us for dinner…“
Jesse loves Wednesday night bingo, pet therapy, group baking, and when special guests stop by for fun and games.
Meanwhile, if I’m not participating too, I am drinking tea and lying on the floor stretching in the family room, or I am taking that time while he’s enjoying himself to make calls home to update family, prepare for the next day, or just take some quiet time for myself.
So much is offered that I’m not mentioning here. Things that you’d never get staying at a hotel. But Ronald McDonald House supports are far more reaching than that!!
I did some quick math. Because of the Ronald McDonald House, we have saved approximately $6,820 that we would have spent on gas, room accommodations, and food.
I take comfort in knowing the Ronald McDonald House will be there as we continue our medical journey next month, the month after that, and many months beyond.