Staying Connected

In the rare moments where there isn't something going on, I like to read. I recently started to read "The Fault in Our Stars" by John Green. It's a young-adult story telling the journey of young cancer patients and their relationships. I got to a part that really hit home for me. The main character was talking about how she didn't have anything in common with the other kids at her "normal" school because of her vastly different set of life experiences. It's hard to understand what a "bad day" means for chronically ill kids when your definition of bad day might be having no hot water and then losing your power as you try to blow-dry your hair after your cold shower. 

Jacob's bad days often end with an ER visit, being hooked to monitors and then hospitalized for a month. Jacob has very little in common with his peers. When they're off riding their bikes, jumping off diving boards, and kicking around a ball, Jacob's getting injections, learning about feeding tubes and waiting in a never-ending line of waiting rooms. 

Being chronically ill is socially isolating. It can destroy a child's confidence in their abilities, make them feel left out when they can't fully participate, and worse; remind them constantly that they are different. It can't be easy. 

Jacob's Healing Rooms is going to change this. There is a free program called UPopolis available to chronically ill children who are patients within the larger children's treatment hospitals across Canada. UPopolis is a secure online social networking site, where children can meet up to discuss what it's like at their hospital, to talk about living with their specific illness, and most of all to help them feel connected to others. 

By installing tablets at each treatment chair in the Medical Short Stay Unit, children will be able to have the opportunity to connect to other children at their own and other hospitals across Canada. It can help to build connections with other kids who understand what their "bad days" are like. It can help, in short, to foster a healing environment. The best thing is that with their free account, they can remain connected with their new friends while they are receiving outpatient services. 

Please consider making a donation to Jacob's Healing Rooms today. Together with your help, we can make a difference. To donate visit: Sick Kids Hospital Donation Page

A Message from Jacob about #JacobsHealingRooms

Jacob's Before-I-Die Message

The other day I was out geocaching with my family and I came across a "Before-I-Die" wall. For anyone not familiar with what it is; it's a chalk wall where anyone can leave a message starting with the phrase "Before I die I want to....". Call it a community bucket-list of hopes and dreams. Here's a picture of my sister and I in front of the wall. 

I have always wanted to make a difference; to leave a lasting mark on the world and be remembered for helping others. I have one life and it would be a waste to only think of myself. In the past few weeks, I've been reminded that no one knows how long we will be here for. My illnesses remind me daily of this fact. One of the lasting impacts I want to make is on behalf of other children who, like me, need to spend a lot of time at the hospital receiving day-long medical treatments. 

Jacob's Healing Rooms is about helping the emotional and psychological sides of illness. We intend to take the current outpatient day treatment rooms and make them true holisitic places of healing. Every patient treatment chair will be equipped with a Wi-Fi enabled tablet to provide access to the internet as well as to act as a source of entertainment. The physical environment will be refreshed with fresh paint and relaxing light covers. Sensory machines (machines that produce lots of bubbles with floating fish and soothing lights), will be placed in each treatment room. I believe that these changes will help to make treatment day a much improved experience for everyone who needs to visit and help to promote healing. 

Here's a quick message from me. Many apologies for the sound and picture quality, it was a busy noon-hour when we filmed this!

Before I Die I want to know that I've made a difference, will you help me?

Medical Crises and Plans

By all accounts, June has been a very rough month for Jacob. What was supposed to be a fun month of concerts (Ed Sheeran, Fall Out Boy, Train/The Fray/Matt Nathanson, and Imagine Dragons), quickly turned out to be somewhat of a nightmare.

Throughout Jacob's Crohn's journey, he has had bouts of tachycardia (fast heart rate), usually in relation to being on prednisone (steroids). Typically during these bouts, he still has low blood pressure. While at the Train concert, Jacob collapsed in his seat. The on-site EMS staff at the Molson Amphitheatre took amazing care of Jacob, keeping him calm and focused on stuff other than what was going on. When they took his blood pressure, we learned that Jacob was in a hypertensive episode, his blood pressure being 148/90. His heart rate was on average 160 beats a minute. Jacob got to "enjoy" his first ambulance ride as he was rushed, sirens and all, to Sick Kids Hospital. Jacob was assessed and released following an ECG reading.

But that wasn't the end of the story.

Two days later, the telephone rang. A cardiologist had reviewed Jacob's ECG strip and noted that he had prolonged QT waves in his heart. The QT wavelength is measured by the time that passes from the start of a heartbeat to when the heart is ready to fire again. Long QT is considered quite dangerous, it's the most common cause of cardiac arrest in young people. There are also a bunch of medications that are known to create potential issues, a few of which Jacob is on. This news has shaken us, but it's also driven us to make sure we make our mark on the world now and not delay anything as you don't know what tomorrow brings. The Long QT complicates a lot of Jacob's health issues. For example, Jacob's nausea has increased since his last Stelara injection. We cannot change his nausea meds as most of the meds available create Long QT issues, or a potential for them at the very least. It also complicates the plan to treat his Crohn's.

After three years, we finally have a bit of a long-term treatment plan for the Crohn's Disease. Jacob had his assessment yesterday for his GTube, a "permanent" feeding tube implant, and has been cleared as an ideal candidate. There is a wait-list for the procedure of about 3 months. Jacob's not thrilled with the idea, but it will be helpful in the long-run as we will be purchasing a portable feeding pump that he could even wear to school if need be. As with anything, it will be an adjustment.

Before we get the GTube, the team has ordered another gastric emptying test involving eating radioactive eggs and watching them pass through. It will tell the doctors how his stomach and intestines are functioning, and if the stomach emptying is potentially causing the nausea problems.

Before we do the radioactive eggs, they want to do a pelvic/abdominal ultrasound. Jacob has fatty liver deposits and his liver enzymes and inflammation markers have increased even further according to his last bloodwork. There is some consideration as to whether the Stelara is causing this, but Crohn's itself can also caused this. We're really hoping it's not the Stelara, as there truly are no other medications available yet to try. Entyvio is going to be about another year before it can be an option to Canadian children. Fingers crossed we can stay on the Stelara.

Jacob will also need to have a new NG inserted as the current one has been in for a ridiculously long time (May). This is a big deal for Jacob, and normally he has some form of sedation to have it done. But once again, we're back to the problem of the sedation possibly being bad for the Long QT.

SO before we do anything else, they want to have cardiology check Jacob over. They have put in an urgent request, so we should be hearing something very soon. Regardless, it looks like we'll be spending summer #4 (Yes, 4 summers!) in various medical offices. I'm glad that we got the concerts in when we did, at least it somewhat balances out what's to come.

Through all of this, Jacob has been planning out different ideas for fundraising events for Jacob's Healing Rooms so that as soon as he is stable we can get a jump on it. Jacob's setbacks have made him even more focused on doing things to help others and to hopefully inspire others to change their ugly situations into something beautiful.

**I'd like to give a special thanks to the wonderfully helpful staff at the Molson Amphitheatre and LiveNation. In particular, there was a young lady who worked for LiveNation that kept Jacob distracted talking about everything other than what was going on. She all but held Jacob's hand and went way above her job requirements in helping us. I wish that I had taken the names of the various employees present to be able to send a thank you note, but hopefully this message may reach them**

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: https://www.youtube.com/watch?v=Q0r0CVLtjvg

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

Thanks!

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.