Tuesday, November 27, 2018

Giving Tuesday 2018

Giving Tuesday 2018 starts with a picture:



They say a picture is worth a thousand words, so what words would you use to describe this room? Imagine being a child, how would you feel walking into this room? What comforts do you see in this room for a child who is feeling scared, alone, worried, or sad? How would you feel if I told you that for the next 8 hours, this room would be a place that you couldn't leave?

Now what if I told you that this is an outpatient treatment room at a children's hospital? 

My first impression of this room goes along with words like "heavy", "depressing", "discouraging", and "boring". In order to "win" a trip to this room, I had already failed other treatments to get my Crohn's Disease under control, so there was already this feeling of having been defeated. Now, I was going to start a new IV treatment, where the potential for serious reactions meant that it had to be done in a carefully monitored environment. It was so carefully monitored, that for the duration of the treatment, you need to pretty much stay in your chair, with the only distractions other than medical equipment being the items you brought with you that day. These were the rooms where I was started on Remicade treatments, and after failing Remicade, received on-going iron infusions. This is the room where I sat wondering how this treatment would make me feel, if it would be helpful, what reactions I would experience from it, and plenty of more questions. This is the room where up to 6 other patients are receiving their own IV treatments, but you can often tell that they too, are just as worried and feeling the weight of the world on their heads. This is the room where you often find out whether you are responding to the treatments. This is one of those rooms that you'll likely remember for a very long time to come.

As most of you know, I've spent A LOT of time at Sick Kids Hospital in various departments for my ever-growing list of medical challenges. I've had a lot of opportunity to compare other areas of the hospital with this area, and really, there is no comparison - this is one of the areas of the hospital that is in desperate need of an update. Unfortunately, this is also one of the areas of the hospital that is severely under-funded within the hospital's budget, with the majority of the general fundraising going to help other areas of priority. The result are these rooms where the environment does little to help lift, engage and support the patients who use them.

This Giving Tuesday, I'm asking once again for your help to make my dream of child-friendly outpatient treatment rooms come true. These rooms should help to encourage healing, give hope, lift the spirits, distract from the worries, and inspire others. Jacob's Healing Rooms project at Sick Kids hospital will help to make treatment day better for all of those patients who will use one of these rooms in the future. Your generous donations will help to purchase materials such as covers for the awful lights, bubble tube machines, a fresh coat of paint (in a different institutional color!), as well as electronic gaming machines that will hopefully allow patients to play together as a way of building peer support.

I'm closing in on my goal, $42,000 out of $60,000 raised so far, but I need your help to turn my wish into reality. Please consider making a donation today to Jacob's Healing Rooms project at Sick Kids. Together we can make a huge difference in the lives of kids who are fighting for better days. Together we can make treatment day a bit less scary and depressing. Together we can change the whole treatment experience.

To donate: https://www.sickkidsdonations.com/registrant/FundraisingPage.aspx?RegistrationID=3641076


THANK YOU!

Tuesday, June 19, 2018

A Musical Experience of a Lifetime

Anyone who knows anything at all about me, knows of my love of music. Music is powerful. It helps distract and relax, or it can help you recharge and get pumped up to meet the world head-on. Music has the ability to heal the soul and make your spirits soar. It's always awesome to discover new songs and new artists that help express all of the many emotions you feel at any particular time. And there is nothing better than going to a concert to see your favorite band.

Since my life is anything but that of a "normal" teen, concerts are a way of allowing me to escape my medical world for a few hours and feel that sense of being normal. I'm lucky in that I've been fortunate enough to attend quite a few concerts in my short time here, in between all of my hospitalizations of course! While it's physically draining to go to, the memories of seeing my favorite acts help to overcome some of the pain.

For this past week, my mom was able to score tickets to arguably one of the hottest bands on the planet right now and one of my personal favorites - Imagine Dragons! As the venue is located a fair distance from the train stop, and parking is almost always very limited, we got wheelchair access tickets so that I wouldn't have to worry about the pain from walking and standing in line. You see, when I walk, my joints like to pop in and out of place which is quite painful. Or someone could say, it's tear-inducing, scream-worthy pain after only a short while! So my wheelchair allows me to get places that I'd like to go but otherwise wouldn't be able to without tears streaming down my face (which has happened at too many concerts!).

I was so excited to go on night 1 of the concert, I had been looking forward to it for months considering it's been a very challenging year for me in terms of my health. Everything was going great until Imagine Dragons took the stage and at that very moment, the crowd stood up and I couldn't see anything as my wheelchair puts me at about 4 feet tall and it seemed like the people directly in front of us were these giant basketball players or something. It was heartbreaking to have tickets to my favorite band and not actually be able to SEE them perform. Although I must say that they sounded great!

I'm sure I'm not the only one who has had difficulty in this type of situation, so I tweeted at Budweiser Stage (the venue for this concert), asking if they've ever considered moving their wheelchair accessible seats to the front of the sections so that people like me would be able to see. What happened next was so far beyond anything that I could have hoped for. When I reached out to Budweiser Stage, all I was hoping for was to put the idea out there that they needed to reconsider their disability sections, so that everyone can enjoy their favorite acts. Well, Budweiser Stage and LiveNation reached back out to me, and offered me the opportunity of a lifetime:

A Meet & Greet with Imagine Dragons and an opportunity to SEE the show!



I can't even put words to how much this meant to me. Imagine Dragons is one of my favorite bands because I can identify with a lot of their songs on a personal level. They believe in acceptance for all, which is so important in today's world, where at times there might seem that there is a huge divide based upon our differences. Sharing messages of anti-bullying, of accepting everyone for who they are at this exact moment, is essential for uniting us all once more. One of the most powerful moments of the concert was when Dan Reynolds, the lead singer, opened up about his struggles with mental health (depression) and told the crowd that it wasn't a weakness to be diagnosed with a mental illness or to seek help for it. For a hugely popular band to give this message to the crowd was a great example of a band using it's influence to do something amazing. Thank you Dan, Wayne, Ben, and Daniel for not only the great music, but for bringing light to the issues that effect so many of us today. It was such an honor to have been able to meet you!

Thank you SO MUCH to Mr. Adrian Walker and Mr. Ethan Wright for allowing me to have the most amazing experience that I know I won't soon forget. It's people like you who help make this world a bit brighter for people like me.



Tuesday, May 29, 2018

Mom's Got Guts: My Mom explains why she is walking in Gutsy Walk 2018

As a parent, you have dreams for your kids. You dream that they will find their passion in life, that they will be successful, that they will have lasting happiness. You dream of sports teams, sleepovers and birthday parties. You dream that their life will lead them places you never thought possible. You don't dream of weekly medical appointments, of hearing the words "we're not sure what's going on" in relation to your kid's health, or of what it's like to wait in the Operating Room's Waiting Room. You certainly don't dream of your child's early death.

Next week will be the 18th time Jacob's gone through the surgical suite doors. 18. 18 times I've sat here in the time leading up to it, repeating to myself "they're going to find what they're going to find",fully aware that we can't control the results. 18 times I will have sat the night before wondering how the results will change the course of treatment, wondering if the intestinal polyps are changing, wondering if this will be the time that we hear the words "remission". 18 times I will have kissed my son's forehead as he's drifted off, and paced the floor of the waiting room, waiting for that electronic sign to change his status to "In Recovery".

This past year I think has been one of the most difficult for Jacob, even though we've had other serious crises in the past. Since the summer, Jacob has been unable to maintain his weight, even though he has grown a lot taller. He now looks like a walking skeleton. At times, he doesn't even have the energy to go do his favorite outdoor thing - Pokemon Go, I know he's really sick when that happens. His pain in his joints and headaches have been really bad, and his eyes continue to go into on/off inflammation flare. He continues to vomit daily after 3 years. He's also having more intense symptoms of POTS (Postural Orthostatic Tachycardia Syndrome). And that's just some of the physical issues.

As with any disease, sooner or later you run out of treatment options and this is where we're at. We're dangling from the precipice with a frayed rope and using all our strength to hold on for the ride.

In Crohn's Disease treatment, the goal is always for the patient to achieve remission as defined by the absence of detectable changes in the lining of the gut. The longer a person with Crohn's Disease is in flare, the greater risk of permanent damage and of cellular mutations leading to the development of cancers, goes up. 6 years is a long time to go without reaching remission. And with no real significant additions to the line of Crohn's treatments, there doesn't seem to be much we can do to get to the point of remission, except hope for spontaneous remission, which would be rare for a kid with such a severe level of disease. All we can do is hope that there will be more options coming very soon.

With surgery happening June 1, I'm not sure if Jacob will be able to attend this year's Gutsy Walk. I have already told him that I will go and walk for him on June 3. I'll walk because awareness is everything. It's more than just a stomach-ache, food not agreeing with you, or having frequent diarrhea. It takes more than just eating the right thing, or taking the right supplement, for the most of us to achieve true remission. I'll walk because I've held Jacob's hand through painful procedures, wiping away his tears and no other parent should have to do that. I'll walk for all the hours I've spent preparing information for school accommodations, e-mailing doctors and reading research. I'll walk for the fear that we hold for our children's future and the fears that they hold deep inside. I'll walk because enough is enough, we need to cure this disease.

Friday, May 11, 2018

What I Would Teach to New Doctors

Dear New Doctor,

Congratulations! All of your hard work and long hours has paid off, and now you will be part of the next generation of the medical community. Your role and service is so critical to those of us living with chronic illnesses, without your help, the quality of our lives would take a really big nosedive. We depend on your knowledge and skill that you have cultivated and grown over the years in order to be successful in our lives, just as you depend on us in order to have people to provide services to. Thank you for your commitment to trying to help your patients to achieve their dreams through improving and maintaining their health.

As you leave behind medical school for your future careers in your chosen field, there's a few things that I'd like for you to consider as you set up your practice. As a patient, I've noticed that there are a lot of differences between the ways that doctors interact with their patients, some of which are helpful and some of which ... are not so helpful. I want you to be able to deliver the best possible care to your patients, and I want your patients to feel that they are getting the best possible care from a doctor who truly does care about their patient as a whole.

The first thing I'd like for you to remember in your day-to-day encounters with patients is that we are all unique. You spent a very long time in medical school and in training, learning the "textbook" definitions of many of the illnesses out there. You have amassed this great wealth of knowledge which is invaluable to us as patients. However, not all of us will fit into your neat little textbook definition, and definitely not all of us will be effected the same way. For example, my Crohn's disease wasn't an obvious case. In fact, at first I was diagnosed with Ulcerative Colitis. Even after my colectomy, when my duodenum started showing signs of inflammation, I was told that it acted more like a colon with the whole section being effected rather than having skip lesions, or patches of inflammation. It wasn't until months later when they did a pill-cam study on me did they find that I had these skip lesions, a hallmark of Crohn's Disease.

Next up, don't assume. We've all heard the saying, and it's not something I can repeat here as it's not PG-13. However, a lot of assumptions are made, without even checking in with the patient to see the accuracy of those assumptions. When you make the wrong assumptions, it can seriously impact on the quality of care your patient receives, causing their health to suffer, and impacts the patient-doctor relationship. For example, a lot of chronically ill people live with depression and anxiety. However, not all of your patients will have depression and anxiety as well. Despite my health, which at times really sucks, I am HAPPY. I feel like I have, for the most part, a great life. Yes, I struggle, but every single person on this planet has their own personal struggles. When my healthcare providers use psychological assessment forms to judge off a piece of paper whether I am depressed, there's often no question asking "HOW HAPPY ARE YOU?". Instead you are asked "In the past two weeks, rate how often you have felt sad/or cried/or worried/etc." There's no option to say "I really didn't feel sad". And the paper also doesn't allow you to put your answer into any sort of context that explains your choice. Like "Do you vomit frequently?", well, I have Crohn's, vomiting can be par for the course.

It's also assumed that because I use a wheelchair to improve the quality of my life, that I don't do anything physically active. This is a very dangerous assumption because it immediately closes the door on exploring other reasons why your patient feels they can't do certain things without using medical device assistance. When you make assumptions, you run the risk of not providing the best possible care to your patients. 

Listen to your patient. I can't stress this little word 'listen' enough. I come to you with my health story, tell you how my illness has been impacting me, and seek your input from that knowledge base you have built. When you talk over me, interrupt me unnecessarily, or just plain not acknowledge my complaint, it's not respectful or fair. These are real problems that we come to you for, and they really impact our lives. If you don't listen, and believe, what we are saying... I'm not sure where we're supposed to go from that point. For example, if I come to you and tell you that I am struggling with a certain problem and it's keeping me from XYZ, don't just pass over it, ask more questions and seek to understand. Listening to your patient is respectful and vital to the patient-doctor relationship. There is nothing worse as patient than leaving an appointment and feeling like you weren't heard, acknowledged or respected. 

Finally, work WITH your patient. The medical team has doctors, nurses, social workers, and other medical professionals. In your more complicated patients, there might be an enormous amount of individuals that are involved in providing care to your patient. Your patient is at the center of all of this, and is the only person who can inform you about their experiences. Your patient needs to be informed of all of their test results, not only so that they can make treatment choices, but so that they can inform other members of the team. At times, we might need you to connect directly with other team members, in order to coordinate the best possible treatment plan. Also, when considering treatment planning, consult with your patient to see if the treatment plan will work for them. Again, as we are all unique individuals, we enjoy unique lifestyles as well. A treatment plan that doesn't work for your patient for whatever reason, is doomed to fail and essentially useless to your patient. Working together to create a treatment plan, you can help to avoid the pitfall of having the patient not comply with your recommendations.

To tie it up into a neat little bow, I'll call these ideas my "prescription to doctors for providing the best possible patient care", and they form the basis for building a healthy patient-doctor relationship.

Thanks for reading!
Wishing you the best in your future,
Jacob

Wednesday, April 25, 2018

Education for all? Well... Sort of.

Some things we take for granted. Take education: many of us kids wish and dream for snow days, or extra p.a. days so that we don't have to go to school. Education in Ontario is a guarantee with educational opportunities available free of charge to all kids living in the province up until high-school graduation. Courses are offered at various levels from basic to advanced and gifted depending upon the student's goals: the workforce, college or university. Although we don't often appreciate the homework that comes with school, it's school that opens the door to the future.

For me, the system is broken. I am one of those kids stuck in a limbo between being too sick to attend school with any sort of regularity, but not sick enough to be admitted to the hospital and entered into their hospital-based school. I attempted to get back to attending highschool this year; it was an epic failure that resulted in being hospitalized for almost 2 months and developing intestinal failure as a result of contracting a simple bug. You see, I take immuno-suppressants to combat my Crohn's Disease. This means that any little thing that comes along, I tend to catch it and it tends to develop into something nasty like pneumonia. Preventing this is not as simple as "wash your hands", which does help, but in a school of thousands, when there is a viral outbreak, there is often no real escape.

As a result of developing the pneumonia and intestinal failure this past year, I was unable to complete the two credits I was working towards. Even though I had 90% in grade 9 gifted science, I lost the credit. It was both devastating and angering. I had put so much work and energy into keeping up, and ended up with nothing to show for it. This caused me to really sit down and think about my options.

To be realistic, I am not going to get much better. I have refractory Crohn's Disease, which is a fancy way of saying "nothing works". In 6 years, I haven't had one single period of remission. My current treatment has helped, but it hasn't been the complete answer to put me into remission. I have run out of available treatment options, so now we're on to symptom management. I will likely always have some degree of immune suppression due to my auto-immune illnesses. So in being realistic, I have to look at the past history when I am trying to plan for what might work for my future. And attending a regular highschool doesn't seem to work well for me. I don't want to keep putting in massive amounts of work only to lose it all because I contracted some simple bug. There had to be another solution.

The only other education option available free of charge to me is through the Student Alternative Learning Program. The only courses available however are at a basic learning level. I went from being at the top of my class in the competitive gifted program to doing basic level work. Everyone keeps telling me how "lucky" I am that I get easier work, that I should be able to just fly through it. For me, it is anything but easy. The only way that I can describe the work I am being given is mind-numbingly boring, and even that doesn't quite get at the real feeling.

When I was in grade 1, I refused to do work. Once we initially learned how to do something, I wanted to move on, I didn't feel the need to practice something that came as natural to me as breathing. So I would sit there and cause problems. My mom was encouraged to send me for psycho-educational testing which revealed that I was highly gifted in my analytic and reasoning skills, and my abstract thinking was off the charts. I was also diagnosed with ADHD and dyslexia. Unfortunately, educational options for children who learn similarly to me, didn't start until grade 4. By then I was too sick for school most of the time, but still being given gifted level material to work on.

And then we have this work. Just to give you an example: I learned how to do a bar graph in kindergarten when we all chose our favourite ice cream flavour and we would chart out the numbers. In my grade 9 work, it described to us step-by-painful-step exactly what we needed to do. It felt condescending. It brought tears to my eyes to have gone from work that was much more demanding to this. The work is also full of spelling errors and outdated information, but that's so low on the list of priorities that need to be changed.

I understand that the system isn't designed for kids like me, and that kids like me are unique and don't come along each day. But we are out there. I also understand that they need to make sure that they have resources available for kids who don't learn concepts as easily, so they have to be able to cover most of the population regardless of ability. Yet to have NO options available that would allow us to get to university without being forced to seek education elsewhere? That just doesn't seem right to me.

I sincerely hope that this can change. This needs to change. We all deserve the opportunity to fulfill our dreams, regardless of our state of health. Yet we can only get there if there are programs in place to allow us to successfully get there. Only when the opportunities and supports are there can education truly be available for us all.

Thursday, March 29, 2018

UPopolis - Social Media for Sick Kids

Can you imagine being a child and living with chronic health problems? How many areas of your daily life do you think are effected? What are some of the biggest challenges you see for kids like me?

I've been living with severe, refractory Crohn's Disease for almost 6 years now, having been diagnosed when I was 8. That first year alone following my diagnosis, I missed just under 80 days at a brand new school due to repeat hospitalizations, complications, and surgeries. As my classmates were all making new friends, it was a real challenge when I wasn't there to have that opportunity. Being "different" from all of my classmates, and the majority of the school I'm sure, only made that feeling of being alone, stronger.

Enter UPopolis. Oh you've never heard of this program? Let me tell you about it! UPopolis is a safe social media site targeted to pre-teens and teens in the health community. Patients are encouraged to create their own page, and then start connecting to others. In addition to the patient pages, patients can play games, and have the opportunity to learn more about health conditions through the health-specific pages. It's a place for building knowledge and support, which is something we all need in order to be able to successfully cope with our illness.

UPopolis to me is important because it's a way to connect. Due to my health, I haven't been able to build a lot of friendships in my home area. As I can no longer go to school, there are even fewer social opportunities. When I first started out at the hospital, I would meet different patients at the common areas, like the play lounges, but we often parted ways after a few days and would only randomly run into each other again. UPopolis gives us that ability to maintain the friendships that we do make while we are in-patients.

Sometimes, the severity of our disease or the type of disease we have, can make us feel pretty alone. For example, when I had my "permanent" feeding tube (GTube) put in, I broke out in a widespread rash that we eventually learned was an allergy to silicone. Silicone reactions are so rare that they're virtually unheard of, yet when I touch anything silicone, I blister. Not a lot of my more healthy friends would be able to understand the experience. Yet in the health community, even if someone hasn't experienced the same situation, they can understand the experience. UPopolis is a great way to be able to share our experiences with people who really do "get it". 

UPopolis is a great way to gain knowledge. The first step to coping with any disease is knowledge. When you don't understand what is going on with your body, what the different treatments might be like, etc., it can seem scary and overwhelming. Learning about the condition helps to take those fears away. It also allows you to build a partnership between you and your health team, so that you can actively participate in your healthcare planning. There is so much information on different conditions on UPopolis making it a great place to start to learn more.

Last fall I was asked to be a UPal, a type of mentor for other patients in the UPopolis community. It's such an honor to be asked to be in this role. To have the potential to help someone else who is struggling, is a huge SUPER-POWER! I've had so many health experiences, being involved with so many different specialties at the hospital, that I can now share with others to help them through similar situations. I have the ability to make a difference, and in doing just that, it helps me to feel better. It reminds me that despite my current limitations, I can still change this world of ours for the better. 

Monday, March 26, 2018

Opportunity Knocked, Or Tweeted, and I Answered: My Patient 2 Patient Education Project Experience

Opportunities. Every day we are faced with opportunities; the opportunity for change, to learn, to help make a difference in this world, to make choices. Even just waking up is an opportunity in that you get the chance to do another day. Late last fall, I was given a major opportunity to represent the child-adolescent patient voice at an IBD (Inflammatory Bowel Disease) conference called "Patient 2 Patient Education Project", or P2PEP, for when that name sounds way long! Of course, I immediately grabbed for this amazing opportunity. To be the first pediatric patient that the University of Michigan IBD Program has invited to speak at this event, alongside other well known IBD advocates in the social media world, was a great honor.

Events like P2PEP are so important to our IBD community. These events are a chance for patients to come together to see that they're not alone, that their struggles are often similar to others. Like how my struggles as a 14 year old with Crohn's, can be just as similar to the 60 year old living with the disease. It's an opportunity to look around and see that you truly are not alone on your journey.

P2PEP is a chance to learn from both patients and experienced doctors. No one talks about our disease. It's almost impossible to find what some people call a "socially acceptable time" to discuss our symptoms with our friends, families, strangers in the elevator, etc. Here's how I see that conversation going:

Friend: How's it goin'?
Me: Well last night, I couldn't make it to the toilet and ended up coating the floors with vomit. As if that wasn't enough, my ostomy bag let loose and sent poop everywhere in a massive code brown incident.
Friend: *crickets*

Unfortunately, for a lot of IBD patients, these are common statements. There is no good and acceptable time to talk about what happens with our body functions. Our disease is one of silent suffering when it's not "right" to talk about it. Yet the only way we're going to educate other people, and find a cure for this disease is if we tell our story. If we shout our stories out loud, and keep shouting, awareness will grow. P2PEP gives us an opportunity to come together to give voice to what is important to us as patients, to address the things that might not always get covered in the often-too-quick medical appointments, like partnering with your medical team, how to get the most out of your doctor visits, and more about the other treatments you likely have not heard about.

The great thing about P2PEP is that it's an event for everyone regardless of age. You might not think that's a big thing, but for teens like me, I think we often feel left out of big medical conferences that aren't specific to the pediatric population. The topics discussed are ones that are actually chosen alongside the patients, to hopefully cover what is important to them and what they want to learn. And that means even us pediatric patients. For example, this year I presented with Dr. Neef on the topic of Diet, Growth and Puberty in IBD, and how those things can be particularly challenging for us as patients. Another talk focused on the idea of transitioning from Pediatric to Adult Care, something that sooner or later, us pediatric patients are going to be forced to do. Which is kind of scary when you aren't prepared for it. So P2PEP really does try to touch on it all within a few short, crazy hours, to give a quick "highlights" of what's going on in the IBD world and why this matters to patients.

I had a great time meeting other doctors, fellow health advocates, and patients, it all came to a close way too quickly, like it was just a dream. As exhausting as the day was for me physically, I left feeling inspired by others, and that is always a great feeling to part such awesome company with. It certainly was a dream of an opportunity.