Monday, June 22, 2015

Gutsy Walk 2015

Poop. There I said it. The first thing that comes to mind when someone mentions Inflammatory Bowel Disease, Crohn's Disease, or Ulcerative Colitis is poop. And lots of it. Never before have I taken such a significant interest in my kid's poop, and I certainly never thought I'd be dealing with so much of it. Yet poop is one tiny part of this huge disease. Along with poop comes malnutrition from the body's inability to absorb nutrients. There comes the fatigue from not having the energy from the food consumed. Then there are the things not even related to poop - the joint pains, the side effects of medication that can leave a person completely bedridden, the eye pains and inflammation of the blood vessels in the eye, the constant nausea, the infections... Along with all of that comes the isolation from decreasing social activities, the lost income from days missed of work (or in our case, lost learning opportunities from school), the anxiety of worrying what comes next, the stress of living with an ostomy bag... There's A LOT more to talk about when it comes to Inflammatory Bowel Disease other than just the poop. That's why the Gutsy Walk means so much to us. 

The Gutsy Walk is the annual fundraising walk to raise funds for Crohn's and Colitis Canada. The one thing we definitely know about living with Crohn's Disease, is that research is critical. For us, research is everything. Jacob's been through a ton of treatments over the last 3 years. He reacted to Sulfasalazine (so can't take any of it's cousins either), became steroid dependent (so we need to be ultra-careful with steroids), can't take Imuran, failed Humira and Remicade (twice), and couldn't stop vomiting on methotrexate. Those are all of the commonly used treatments for Inflammatory Bowel Diseases. Jacob has now been started on Stelara, which although approved for pediatric psoriasis, it is not approved as a Crohn's Disease treatment on it's own. Recent research has suggested that Stelara may be effective in a certain population of Crohn's patients, but more research is required to officially claim it as an effective treatment. 

Jacob is 11. He has a very long life ahead of him during which he'll always live with this disease. If this current treatment fails, there needs to be research to have other treatments. Better yet would be a cure, but if not a cure, there needs to be more effective treatments available. In order to be able to gain the attention these diseases require, people need to be able to talk about them. And that means people do need to talk about poop. 

Just a quick shout-out to @VeganOstomy, Eric, whom we met during the Gutsy Walk and was able to share Jacob's journey with him. Eric does a lot of blogging work within the IBD and Ostomy community. And thanks to Jen, our wonderful friend also living with Crohn's Disease who walked alongside us, just as she has done throughout this whole crazy 3 years. You guys are both Advocacy in HealthCare heroes :)

Jacob's Healing Rooms Golf Tournament - June 2, 2015

Every once in awhile there comes along someone, or a group of people, who completely surprise us. Throughout our 3 year journey, we've been fortunate enough to have had quite a few "strangers" step up to say some kind words of encouragement, or to share how Inflammatory Bowel Disease has touched their lives. These type of people remind us daily that no matter how dark and long our family's battle may be, there are people out there who will help to light the path. This post is about one such group of people.

On June 2, Jacob's Healing Rooms was honored to be selected as the beneficiary of the Leaside Ladies Curling Group's fundraiser. These amazing ladies had heard of Jacob's battles with Crohn's Disease and what he was trying to do to improve the treatment experience of other patients and had graciously came forward to ask if they could help. They went way above & beyond to help get Jacob's Healing Rooms well underway, with successfully hosting a golf tournament at The Thornhill Golf and Country Club.

These ladies opened their hearts and pocketbooks to help make Jacob's fundraiser a huge success. In total, we were able to raise $3600! It's still a long way from our goal of $60,000 but it's a big jump and means so much to us. Jacob was able to give a very touching speech about his battles and why this project means so much to him. Afterwards, he was given a standing ovation by the 90+ golfers present and was approached by many who told him what an inspiration he is.

We need to keep this momentum going. A few things you can do to help us:

1. Follow Jacob's blog. We'll be sharing his journey with Crohn's Disease and updating about our fundraising project. Be sure to share Jacob's blog posts with others!

2. Follow Jacob's twitter account and RT (Retweet) his tweets: @KidWithCrohns

3. Follow and share Jacob's Official Jacob's Healing Rooms Facebook Page on your page.

4. Watch, Follow and Share Jacob's You-Tube Videos:

5. Donate to Jacob's Healing Rooms:Jacob's Healing Rooms Fundraising Donation Page


Friday, June 5, 2015

The Inspirational Background to #JacobsHealingRooms

We didn't ask for this. No one does. When I learned I was going to finally be a mom, this wasn't anywhere close to the picture I had in my mind. To say that Jacob has been through a lot would be like saying "The Grand Canyon is big"; it just doesn't quite cover it. Anyone who hears his story, often asks me how I cope with all of this as a parent. There really is no answer to that, when you are not given a choice you just paste the smile to your face and keep going. Day by day you learn to adjust to the "new normal".

Jacob inspires me at every turn to be a better person and parent. Jacob has been so sick over the past 3 years, and yet rarely does he stop to think of himself. When he first got sick, June of 2012, he started to grow his hair to make a wig for kids with hair loss as a tribute to his grandfather who was diagnosed with cancer. Even when he tripled his weight on steroids and was bullied by others calling him a "fat lady", Jacob committed to making the lives of those around him better. He was able to donate a full 12inch ponytail at the Terry Fox Run in 2013. To be able to stand up for what you believe in, despite other people's negativity, is something not a lot of kids at 9years old can/will do.

When Jacob learned he needed surgery to remove his colon and would need to wear an ostomy bag potentially for the rest of his life, his thoughts weren't focused on himself. He turned and informed the surgeon that if they were removing his colon that he wanted to make sure that some good came of it. He made sure it was donated to research so that other kids would may one day not have to go through this experience. Needless to say, the story sends chills for a lot of people and brings me tears of proudness upon sharing what he's done.

Even when Jacob learned that he had officially exhausted all of the typical Crohn's treatment medications, he said that we still have hope because there is research being done, there are people out there who just as desperately want a cure for this disease. When we started on the Stelara injections, he even said "Why not let it be me who tries this out? If I have success maybe it will open the door to let others like me try it out and it might help them". He was right on one part; it might help them.

But no Jacob, there is no one quite like you.

When Jacob approached me with his #JacobsHealingRooms plan, I'm sure that everyone in the pharmacy line was staring at me as I had silent tears streaming down my cheeks. Jacob had asked for his Christmas present to be the ability to raise funds for Sick Kids Hospital to update the Outpatient Treatment Rooms and make them child-friendly. Jacob talks at length about how important the patient's environment is to healing and I would have to agree. There have been many hours spent at Sick Kids in the treatment rooms, staring at the blank walls. The rooms just feel so "heavy" when we go in. Jacob wants to change that. Jacob wants to make these rooms to be a place where even though you're getting an IV treatment and might not feel well, you still have plenty to do to distract you from all that.

Jacob wants this to be how he is remembered. He says "I only have one life and I might as well do something with it to make this world a better place". Yes Jacob, you have already made this world a better place. I couldn't be more honored to call you my son.