Monday, June 12, 2017

Child & Family Centered Care Week at Sick Kids Hospital

Last week I had the incredible opportunity to be a part of a panel discussion on Engaging Patients as part of Child & Family Centered Care Week at Sick Kids Hospital. It was an amazing honor to give a
voice to the other patients in the hospital and their families.

I'm happy to be able to share my speech with the world, hoping that the medical community can take notes about what it means to the patient to be included and take steps to including patients at all levels of healthcare. Without further delay...heeeeere's Jacob (insert drumroll!)

★Hi, Good afternoon! I'm very happy to be here today, not only to share my story, but to be able to represent other child patients and hopefully inspire you to help make an even bigger difference in the lives of others.

My name is Jacob, I'm 13, and I participate on the Children's Council here at Sick Kids. I first started coming here when I was 8 and diagnosed with severe Crohn's Disease.

Giving to others has always been important to me, so when the doctors' best efforts to control my disease didn't work, and I need a colectomy, I asked to donate my colon. You could call this my first really big donation, but I still wanted to do more to help others.

Unfortunately, I experienced a lot of health complications during my last 5 years. I have been to the operating room 16 times. I have spent holidays like Easter, Christmas, birthdays, and summer vacations here. I've often spent weeks here as an in-patient at a time, and sometimes, I have been here at least weekly for appointments. Thankfully my GI team never gave up on me and after a lot of trial and error with everything under the sun, they have finally found a medication that is working well for me right now.

Healthcare is a partnership. At the beginning, I come to you with a medical problem. You, the doctor, listens to me, asks me questions, and prescribes the next steps to getting better. But let's say the medical problem I bring is complex and chronic, like my Crohn's Disease. If I am going to live with this for the rest of my life, or until there is a cure, I need to know something about it. That means that I need you to answer my questions which needs to be done at the child and family's level of understanding.

I once had a doctor who suggested that I didn't need to know as much as I do about my disease. This is a huge problem because the more I know, that more I can participate in making decisions about my own health. I can't take responsibility for my own health without having all the information and developing an understanding about it. I need to be able to bring up new research that may improve my health, as sometimes doctors might not have thought of something in their busy schedule, and that something might just be the key to the right treatment.

But healing is about more than just finding the right treatment, it's also about the support services the hospital offers, that encourages patients to heal and to participate as partners in their care.

Because of my health experiences, I have been to many areas of the hospital, from GI to Dermatology, to the In-Patient wards and many others. And of course you can't forget the fun places like Marnie's Lounge, or the old Starlight Lounge which is now the Samsung Space. I've had a lot of opportunity to compare different areas and to imagine "how would I make this better?"

For example, consider unit 4C, the medical short stay unit where Inflammatory Bowel Disease patients start to receive IV infusions of medications like Remicade. Inflammatory Bowel Disease patients are often prescribed this strong medication when other treatments have failed to work. I can remember when I started these treatments worrying things like "What if this treatment doesn't work?" and "How will I feel afterwards?"

There is a lot of hoping going on too; hoping that this will be the medication that allows you to be out of the hospital; hoping that this will take away the pain; hoping for a return to being a child. These fears I would imagine are shared with a lot of the patients who are coming through those treatment doors.

Now imagine having all those fears as a child and entering a place with very few things to distract you during your 8 hour day. The three large group treatment rooms are very plain rooms, where the only distractions are 2 very old televisions that are out of reach of us patients to control, and about 6-7 wall stickers.

When I compared this to the other areas of the hospital, it was clear that these rooms were in desperate need of an update to make them more child and family friendly. In other words, they needed to encourage healing more. Working with the Foundation, I created "Jacob's Healing Rooms Project" which will see tablets installed at each treatment chair; a bubble tube sensory machine to add color and visual distractions; and light covers to make the room more appealing by covering the harsh lights with pictures of clouds. Using social media, I have just reached $36,000 of my $60,000 goal! I'm really hoping that this will help to uplift the spirits of children and their families coming to Sick Kids for short-stay treatments, and also help the staff by creating a more appealing and enjoyable place to come to work each day, and do the fabulous job that they do for us.

I know first-hand that the right environment can help to encourage healing. When patients work with the hospital to develop services that promote a healing environment, it has a positive impact on everyone's health. Patients who discover things that could be done better, voice their concerns, and work in partnership with the hospital, can help create a healing atmosphere.

I enjoy the opportunity I have at Sick Kids to be able to give a voice to the most important people in this hospital; the patients and their families. These are the people who use the services you offer, so it is important to have their input into what would be even more helpful for the hospital.

But I didn't want to stop there with trying to help improve this hospital, so this year when it was suggested that I apply for Children's Council, I jumped at the chance to be able to make a larger difference.

Truth be told, I come to this hospital so much that when I walk through the halls, I always see somebody I know or who has been involved with my care. Spending those holidays here, the Sick Kids staff has become almost like a family to me, as I'm sure many other patients and their families who spend time here would agree.

The staff play a huge role and impact our personal story, in fact, it becomes impossible to tell our story without them. Each of my bravery beads not only tells the story of what I personally have gone through, but it also tells the story of the staff in the background. For example, my clown beads tell the story of an amazing therapeutic clown, A LeBoo and the incredible way that he uses his gift of finding a way of interacting with each of us on our own personal level. And he seems to never forget a face. My bloodwork beads tell the story of the kind blood lab ladies, who even though I don't like 6:30am bloodwork, always greeted me with a smile and jokes. There isn't a single bead here that doesn't involve a staff member in the background. This is why child and family centered care is so important.

Child and Family Centered Care, where families and patients like me can partner with staff at various areas of the hospital from designing of patient spaces to evolving policies and planning, plays an important role in developing that kind of relationship that I just described. I hope that more patients feel that if they too recognize that something can be made better, that they can approach the hospital with their ideas, and they too can participate in changing the hospital for the better. As the hospital continues to evolve, we as patients and families need to be included and encouraged to provide input and feedback, in order to continue to make this the best hospital to come to. No matter our abilities or the challenges that stand in our way, we are all capable of making a difference in the lives of others. Nothing is impossible when you have a dream. Thank you.★

Tuesday, March 28, 2017

In Honor of Kindness

A few weeks ago, I had the amazing opportunity of attending the Member's Statements Session of the Ontario Legislature at Queen's Park, as a special guest of Member of Provincial Parliament Granville Anderson. After meeting Mr. Anderson at one of my Jacob's Healing Rooms events, I had extended the invitation for him to join me for my Jacob's Birthday Bonanza party back in December to learn more about my Jacob's Healing Rooms project and my plans to help out Sick Kids Hospital by creating child-friendly spaces to receive outpatient IV treatment. Mr. Anderson was quite impressed with what I have done so far in fundraising and inspiring others to make a difference in this world of ours.

You can watch Mr. Anderson's speech via YouTube here:

These amazing words of recognition for my Jacob's Healing Rooms, along with the kind words later shared by other Members meant so very much to me. It's very encouraging to have my efforts recognised and it motivates me to work even harder towards my goals. However while it is nice to be recognised, I also am aware of just how much more I want to do to make a positive change in this world.

During my visit to Queen's Park, I had an awesome time chatting with another one of my local Members of Provincial Parliament, Jennifer French. We were talking about how Ms. French is actually my local MPP, while Mr. Anderson is in the next riding over. Good ol' political geographical boundaries, gotta love them. But the point is a good one - Jacob's Healing Rooms doesn't have a specific "location".  Children come from all over Central and Southern Ontario to be treated at the IBD Centre at Sick Kids Hospital. The impact that I hope to have with Jacob's Healing Rooms will hopefully make a difference for children from all over this province. Yes, I'm working right now to transform the outpatient IV treatment rooms, but I'm also hoping that this is just the beginning of some wonderful things to come.

Jacob's Healing Rooms might be working to create a better treatment area for sick children and their families, but it's about so much more than that at the same time. I've been thinking a lot about this while I've been struggling to find the right words that fit with my thoughts. Yes, I started Jacob's Healing Rooms because of my experiences at Sick Kids Hospital getting IV treatments for several hours a day for my Crohn's Disease but it all came from recognising a huge need, something that was lacking that could make the treatment experience better in this world. And that's exactly what needs to be done by us all.

Regardless of our geographical political boundaries, regardless of our race, age, gender, religion and personal beliefs, we all have one thing in common; we're all capable of change. Each one of us has the ability to take their personal experiences, find something that would make it better, and create positive change. If we do this, if we each make just one positive change in this world, one act of kindness, our world would become that much better for everyone and the future generations. That's what Jacob's Healing Rooms is about. It's about bringing people together to help inspire them and encourage them to always search for the one thing that could make a difference to others. It's about dreaming big and finding ways to achieve those dreams. Kindness, hope and love are three of the greatest gifts that you can give to others. And the best thing about those gifts? They're free to give.

To Premier Kathleen Wynne, Health Minister Dr. Eric Hoskins, Speaker of the House, Dave Levak, Lisa Gretzky, thank you for taking the time out of your busy schedules to share some kind words of encouragement with me.

And Mr. Hoskins, when you asked me if I had any advice for you, we should totally talk because man, do I ever have some suggestions on creating healthier communities!

To learn more about Jacob's Healing Rooms project, please follow along on my blog, Facebook Page, Twitter (@KidWithCrohns) and Instagram (@jacobshealingrooms!

Thursday, March 9, 2017

Golden Friends

"Some people come into our lives and quickly go. Some stay for awhile, leave footprints on our hearts, and we are never, ever the same" - Flavia Weedn

Strangers are just people you haven't had the opportunity to meet yet. Myself, I believe that strangers can quickly become friends and friends can quickly become family. I've had the amazing opportunity to meet a lot of strangers through my fundraising, Scouting, and being on social media so often. What always does surprise me is the amount of kindness that I've been shown by so many strangers who have quickly become like family to me. Seeing the generosity that has been offered by so many people on my journey has lifted my spirits on difficult days and inspires me to keep going. 

Gold Reflections in the Bowmanville Mall has been an amazing supporter of my Jacob's Healing Rooms Project. Marilyn, Karen and Ken Easby, the owners of the store, heard of my struggles with Crohn's Disease and plans to make the treatment process better, and jumped at the opportunity to support my charity work to make child-friendly IV treatment rooms at Sick Kids Hospital. The Easby family went to various local businesses and organizations to seek donations for promotional draw items that they could give away as prizes. All of the fabulous staff at the store encouraged customers to get involved in supporting my fundraising efforts. They were able to gather enough donations to host multiple weekly draws from Gold Reflection's 30th Anniversary celebrations in November to Valentine's Day.

In total, Gold Reflections was able to raise $5797 for Jacob's Healing Rooms! This goes a long way to helping to improve the treatment experience for so many kids at Sick Kids. The draws were the perfect example of how a local business can bring the community together to help create a positive change. 

But Gold Reflections wouldn't have been able to pull this event off without the help and support of the many local businesses who generously donated prizes. I'd like to give a shout out of thanks to: 

Kelsey's Restaurant - Bowmanville
Shauna Duff of the Bowmanville Mall
Rotary Club Bowmanville
Dr Doreland at the Oshawa Animal Hospital
GEM Lab.
Rhonda Miller & Ron Baldwin
NEBS FunWorld
Enesco Canada
East Side Mario's Bowmanville
Staples Bowmanville
Hair House (Bowmanville Mall)
Top Choice Nail Salon
Nygard - Bowmanville
CJB Insurance
Canadian Tire
Cineplex Theatre Oshawa
Cineplex Theatre Bowmanville
Shoppers Drug Mart Bowmanville Mall
GoodLife Fitness - Bowmanville Mall

And of course, none of any of that would have been possible without the kindness of the people who made donations as they picked up their draw tickets. Thank you SO MUCH to those who got involved in supporting my special project. 

Even my words of thanks are not enough to say how overwhelmingly grateful I am for all the hard work everyone put in to make this event such a success. Thank you Gold Reflections and welcome to Jacob's Squad. Together we're going to make a huge difference!

Tuesday, February 7, 2017

Happy 4th Ostoversary to Me!

"Absolutely not going to happen" - that was my response just over 4 years ago when an ostomy nurse told me that most kids who end up having a surgery to create an ostomy end up not even thinking about the fact that they have a bag attached to them for collecting waste. There was just no way I could ever wrap my mind around the idea of what it would be like to have an ostomy bag, so thinking that I would come to not even think about it at all one day... it seemed impossible.

I have severe Crohn's Disease, a form of Inflammatory Bowel Disease (IBD) for which there is no current cure. At the time I needed to have ostomy surgery, I was only 6 months into my diagnosis and nothing the doctors threw at me was working. I was taking handfuls of pills all with the hope of achieving remission, but I would still be at the hospital weekly due to the heavy bleeding. The doctors thought that I had Ulcerative Colitis at first, another form of IBD, and since the inflammation was limited to my colon and rectum, they felt that having a total colectomy (removal of the colon) with an ileostomy (creation of an opening on the outside of the body using the ileum for waste disposal), would be my best chance for regaining my life outside the hospital. I was ready for the surgery but was it true that I would one day come to accept having an ostomy so completely that I would forget about it aside from times of emptying the contents or changing the bag?

I thought that I would be aware of my ostomy every second of every day. Aware of this bag of poop hanging off of me constantly. Aware of being different and at times looking different. Aware of other people's reactions. When people asked me about it, would they get grossed out and treat me different? Would people not want to be near me in case it suddenly exploded, or because they think I might smell (which I can tell you, other than when I have a "code brown accident" there is no smell)? I'm pretty sure that anyone my age who has had this surgery has had similar questions as well. Most kids would have had no idea what an ostomy was, and what it would mean for their day to day life. And not knowing creates fear and anxiety.

Today marks my 4 year "ostoversary". 4 years ago today, I had my colon removed and donated to research, and started pooping into a bag. I was scared being wheeled in to the operating room, my life was about to forever change. I wanted to feel better, to be back to doing the things I enjoyed, but I was nervous about what it would look and feel like afterwards.

The first time I saw my "stoma", the part of my insides now sewn to my outside, I was grossed out. Those first days and weeks, I worried a lot about the bag suddenly falling off, or stuff getting trapped in my new exit and causing new problems. I worried about it being touched in the cleaning process (it doesn't hurt), and dreaded having to do changes every few days for it.

I don't know if it happened over night, or if it were something in the making, but one day I realized that I wasn't actually thinking about it. When I think about how much time I would spend these days thinking about my ostomy, other than emptying it or changing the bag, I would say that I don't think about it. At all. My ostomy has become my normal, it's something that I will live with for the rest of my life, or until Crohn's is cured, which is ok with me. Yeah, it sucks to sometimes have these giant ostomy fails, like when my bag starts to leak and I have no place to go to change it, but I don't find that I'm worrying about those accidents that much anymore, because they just don't happen as often as you imagine when you first start thinking about it. In fact, most of my fears have been completely for nothing.

My ostomy is my bag of honor, it's a symbol of having gone through a very challenging time and having come out on the other side. It's a symbol of strength, of having overcome some of the hugest hurdles life can throw your way. My bag saved my life and taught me that sometimes you just need to believe that it's all going to turn out ok. Yes, it takes time to adjust, but that's true to most things in life. But life does go on, that I can promise you. My name is Jacob and I am an ostomate.

Tuesday, January 24, 2017

The Uncertainty of Tomorrow

Today is #BellLetsTalk Day, a day in recognition of the importance of mental health where Bell is donating 5 cents to mental health programs every time the hashtag #BellLetsTalk is used. Mental health is a problem that many live with, but if we all stand together we can work to solve the problem, to end the stigma that goes along with getting a mental health diagnosis.

I don't live with a mental health diagnosis, but I do experience some anxiety. I live with the unknown, an uncertainty of what tomorrow will bring. I live with a few chronic illnesses, like Crohn's Disease, Ehlers-Danlos Syndrome (EDS), and problem's with how my heart works. It makes planning into the future very challenging, as I have no idea how my health will progress in the future.

I have the perfect example of the anxiety this causes - This week is my "High-School Transition Planning Week" or in other words, a week of a lot of meetings, and information overload. Where I live, we have to basically choose whether we are going to go to University or go to College as soon as we're given our course selection stuff. If you want to go to University, you need to take a minimum of the advanced level requirement courses. If you want to go to College, you can take the "easier" level courses. Well in order to know whether you should go for College or University, you pretty much need to have some idea of what you want to do with your life.

There lies the problem. It's hard for me to look into the future and imagine what I am doing because all of this health stuff that I live with daily fogs up the picture. It's like an abstract painting, you know the image is in there but sometimes in looking at it, all you see are parts of things with no clear connection. Right now, the Crohn's Disease is mostly controlled, but I'm dealing with a lot of issues with dehydration, overheating, and the pain from my joints from the EDS. Standing longer than 5 minutes is painful, walking and stairs are just as brutal. I have the physical stamina of a sloth - I move and then need to rest from moving. My physical health does nothing to help ease my worries about the future!

In thinking about the future, we also look at the past in order to try to predict the outcomes of whatever choices we're making at the time. If I look at my health history, I've spent more time with doctors and medical staff than most other significant people in my life, over the past almost 5 years. I haven't been able to attend school regularly. If I base my future on how my life has been over the past few years, I worry about the challenges that missing a lot of highschool days could bring. What happens if my Stelara fails, I go into a Crohn's flare and miss a month of school? What if like this year, I just don't have the energy to be able to make it through full days? What effect will this have on any plans I do make?

I try to deal with this anxiety in the same way I deal with all the other hurdles in my life, with positivity and taking it one step at a time. I know what direction I want to go - University - and now I just have to take it one baby step at a time to get there. I could let the worry overwhelm me, it is an overwhelming thing to have to think about. And sometimes it does get overwhelming. But then I take a step back, breathe and figure out what the next step is. Overcoming the fear is a daily process, some days you win, other days, ... not so much. But there is always hope, because there is always the possibility of a tomorrow. And so long as there is the possibility of tomorrow... there is hope for a new beginning.

So where do I see myself in the future? I don't have a specific job in mind, but I want to do something in Science. I want to research, discover, come up with new scientific theories, work with quantum and nano physics, chemistry, biology and genetics... And of course, continue to inspire and help make a difference in this world.

So let's talk today about mental illness. Become part of the movement, be part of the solution. Use #BellLetsTalk and help tell the world that mental health is nothing to be ashamed of. Because, let's face it, sometimes we all need that shoulder to lean on and that hand to help us up.

Monday, January 16, 2017

Love, Time and Death - The Trio of Life

Yesterday I saw the movie Collateral Beauty. It's about this guy, Howard, struggling with the grief from losing a child and his search for meaning while trying to put his life back together. In his search, he writes letters to concepts - Love, Death and Time, the three things that connect us all.

It's a movie that makes you think. Can there be beauty through pain, suffering and loss? Can we really take tragedy and see light within the darkness? Is there such a thing as beauty in ugliness?

I think so. Love is within everything. It's the passion, it's the motivation, it's the inspiration. Love is the creative force in this world and everything is created out of love. Love is the main reason for doing what you do. But love is also in the struggles. Love gives us a reason to keep going each day, a reason to get out of bed.

Living with Crohn's Disease is ugly. I've had 15 sets of gastroscopies, colonoscopies/ileoscopies, proctoscopies, all with biopsies. I've had my colon removed and now have an ostomy. I have a permanent/long-term feeding tube. I've had to live through severe side effects caused by Remicade, then Humira, and then allergies to a list of things longer than I am tall. I've had some pretty painful procedures like rectal ultrasounds, skin shavings and skin biopsies. I've had a few nights where I wasn't sure if I'd wake up to a tomorrow, such as when I had my hypertensive crisis episode and collapsed at the Train concert. Or when I had pneumonia and aspirated into my lungs. It's ugly. Yet, there is still love to be found in all of this suffering. Love is what lifts me up to keep me going each day. Love are the complete strangers that reach out with little notes of encouragement. Love are the little rays of light in otherwise very long, dark days.

Time gives us a chance to use our love, to transform the ugly into beauty. Time is the hope for tomorrows, the hope for a better future. Time is an opportunity. No one knows what tomorrow brings, the only time that we have is now. Time and Love give us the opportunity to create a lasting impression on the world. We have this moment to make a difference, we can make this moment matter. I'm very aware that our time here is short, and can be much shorter than any of us could have dreamt of. I want to leave something beautiful behind when I die. I want my life to have meant something. I want to be remembered as the kid who did something positive to make this world a better place.

Death. We fear it. We want to run and hide from it. But death isn't necessarily to be feared. To me, I think of death as the beginning, the point where your old life is going to meet a new life, just possibly in a new form. And that's exciting since it means that there never really is a final "goodbye", that we're connected together even after death. It's the beautiful side of death that is often overshadowed by the grief death creates. Even out of the pain of death, beauty still exists. Proof of this can be found in any of the deceased transplant donors, or in the charities that are created after the death of a loved one.

Everything comes down to acceptance, which also comes over time and with love. You accept that things change. You accept the reality of your situation for what it is. You accept your personal limitations. You accept your life for what it is - a journey filled with possibilities but not without challenges as well. Acceptance is necessary to truly live, if you don't accept the positives and the negatives in your life, you spend so much more energy fighting back against them rather than spending your energy moving forward. I accept that I have multiple illnesses that I will live with for the rest of my life. That doesn't mean that I am happy to have Crohn's Disease or Ehlers-Danlos Syndrome but I have to accept that these will be in my life as part of my path to happiness.

So the next time you're faced with a crisis, stop, breathe, and try to look for the beauty, look for your opportunity to turn the ugly into something beautiful. Make today matter.