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!

#MyGivingStory - Giving Tuesday Plans to Help Sick Kids.

#MyGivingStory starts with a diagnosis. In July 2012, at the age of 8, I was diagnosed at The Hospital for Sick Children (Sick Kids) with severe Crohn's Disease, a type of Inflammatory Bowel Disease. Over the next 3 years, I would have many ER visits, hospitalizations, medical appointments and have been wheeled into the Operating Rooms 13 times. One of those visits was to lose my colon which I donated to science to help find a cure for this disease so that others wouldn't have to go through these struggles.

Last winter, I was receiving Remicade IV treatments again. Remicade is one of the medications that is often used once a patient has failed to respond to other medications. Patients at Sick Kids will be started on Remicade infusions as an out-patient, and receive their first 3 sets of infusions in the group treatment rooms. Here's what the treatment rooms look like:

As you can see from the pictures, the rooms are very plain, and do little to offer distractions from the medical treatments or a source of entertainment for the kids. There are two televisions suspended from the ceiling but they are out of the control of the kids since the remote is attached to the bottom of them. And there's always a problem on agreeing what to watch since the person sitting next to you might not like what you want to watch. I've spent 8 hour days in rooms like this while getting my IV treatments.

If there's one thing I learned through my journey, it's that distractions help in the healing process. They can take away the anxiety that you feel when getting treatments, the worries about whether it's going to work, distract from the pokes and the pain. Having a positive outlook helps greatly in the healing process. When you are feeling "down", the pain and other symptoms can make you feel even worse. Feeling encouraged, supported and hopeful are extremely important in the healing process since the disease effects us emotionally as well as physically. So I came up with a plan to help make this happen.

I asked my mom if for Christmas I could ask for the ability to transform this place into a child-friendly place of healing and hope and the plan for Jacob's Healing Rooms was created.

For #MyGivingTuesday I'm asking for $1 donations to Jacob's Healing Rooms. Your money is going to help me to install tablets at each treatment chair so that patients will have a source of entertainment, be able to connect with other patients in the hospital and across Canada using UPopulis, check their e-mail and of course, play games. In each room, I'm going to purchase a colorful bubble-tube machine as a source of distraction and brightening up the room. I'm hoping to get a fresh coat of paint in a relaxing color (I find the yellowness of the room hard to look at), and put cloud panels covering the lights.

This past June I had a medical crisis that reminded me that life was short. I have been having some problems with the electrical activity in my heart. This has only renewed my determination to make a difference in this world and in the lives of other sick children. Jacob's Healing Rooms has become my #BeforeIDie wish.

Your $1 could help me make this wish come true. It could bring a smile to a sick child's face, give hope for a brighter future, and inspire others to make a difference in this world. Your $1 could make these rooms amazing child-friendly places of healing. Your $1 could take the stress off of parents who are also worried about their child and struggling to distract them during the long treatment day.

This #GivingTuesday please think of Jacob's Healing Rooms and make a $1 donation to help make my wish to help other sick kids come true. And please share my story with as many others as possible. Together we can make a difference.

Here is the link to my Sick Kids Donation Webpage: Jacob's Healing Rooms Giving Tuesday Donation Link
You can follow my story on Facebook: Jacob's Healing Rooms Facebook Page
And I'm on Twitter: @KidWithCrohns
And on Instagram: @JacobsHealingRooms

Jacob's Song of the Day (11/21/2015): "The Rainbow Connection" by Kermit the Frog

Today's song is for all the dreamers out there. Never give up your dreams no matter how far away they might feel or the challenges that you face along the way. Today's song is "The Rainbow Connection" by Kermit the Frog. Have a listen and read why I chose this song today:

I'm a dreamer. I'm a wisher. I'm a thinker, planner and full of hopeful ideas. In this way, I'm a lot like Kermit. I also love rainbows, and still think that there's something so magical about the splitting of light into the many colors streaking across the sky. When I think of a rainbow connection, I cannot help but think of the "magical" connections that I've had the opportunity to make so far in my life. Those connections that have happened on the spur of a moment, but came to mean so much more to me than can be explained. Every time someone shares their kind words of support with me, it motivates me even more to keep going and helps me through the difficult bad days. Complete strangers have become these little fireflies giving me hope and strength. They're magical.

Dreamers and a dose of magic are needed to change the world for the better. Jacob's Healing Rooms is a fantastic dream of mine. It's my wish that other kids can have an encouraging environment when they go to get their treatments at the hospital. When I first started my dream felt so huge that I wasn't sure that it would ever take off. It was really hard to get people to take notice of me, the little kid with the big dream. But I stuck with it, and I'm so glad that I did. I've made awesome connections like with #MyGivingMoment, the ByStander Revolution movement, the Dancing Man, Krista (#TheCheerleaders) from the Amazing Race, Chris from The New Electric, my Houston Texans cheerleading squad... It's been an overwhelming outpouring of support which I couldn't be more grateful for! Thanks to EVERYONE who has supported me so far with my dream. I'm going to reach that end of the rainbow soon and Jacob's Healing Rooms will be that pot of gold!

And as for my fundraising update: I set a goal to hit a total of $6000 raised for Jacob's Healing Rooms for Giving Tuesday. I'm now only $350 away! It's such an awesome day!

*To DONATE to JACOB'S HEALING ROOMS click HERE*

Giving Tuesday is Almost HERE!

I'm so excited! I had an awesome interview with Reka Szekely, a reporter with The Oshawa This Week/Metroland Media shortly before I went in for my GTube surgery. It was published this past week and the response from people has been INCREDIBLE! To date, we have now officially raised $5000. I still have a long way to go to my ultimate goal, but it all feels like it's beginning to take off finally! Here's a link to the article:

Oshawa Boy, Jacob Ralston, fundraises for Sick Kids while Battling Crohn's Disease

Giving Tuesday is fast approaching - December 1st, 2015! I'll be going on an all out media blitz to try to raise as many $1 donations as possible that date, with all the money going to Jacob's Healing Rooms at Sick Kids Hospital. These rooms for children receiving outpatient IV medical treatments are going to be awesome, and so supportive of what these kids are going through. And that's what it's really about - helping others. This is just something small that I could do to hopefully brighten the lives of others. Tablets for games, visual distractions, and a cheerful environment will go a long way to giving the rooms a much needed kid-friendly environment.

You can read more about my plans for the outpatient rooms by clicking HERE

Giving Tuesday also helps me. I might not get to use these rooms in my future, but that's ok with me. I'm doing this because I remember very clearly what it was like to spend so many hours staring at the walls just waiting for it all to be over. I'm doing this because I understand the anxiety of worrying about the treatments and the medications. I'm doing this for the parents, so that they hopefully can relax as much as possible and not worry about needing to offer constant distractions. I'm doing this for the staff, to give them a morale boost and make them feel excited about where they are working. It's not only the kids using the treatment rooms that benefit from my project, but a much larger community of patients, caregivers and staff. Giving Tuesday makes me feel good inside, even when I'm in a lot of pain and very uncomfortable.

Giving Tuesday gives me hope. There's so much negative in this world, Giving Tuesday counters that by promoting kindness and generosity. I can't think of anything better in the world to offer than love. Jacob's Healing Rooms is my gift of love to other kids. It's my wish to help them feel hopeful and inspired. To dream big and never let go of those dreams.

Please share my Jacob's Healing Rooms messages, especially about Giving Tuesday. If you are able to make a $1 donation, it would be very much appreciated. You can make an online donation here:

Hospital for Sick Children Donation Page

If you don't wish to make an online donation but would prefer to make a cash/cheque donation, please send me a note and I can send you the details of how to make sure it goes to Jacob's Healing Rooms.

And don't forget to follow along with me on Twitter!: @KidWithCrohns

Thanks everyone. Each and every one of you are amazing!

Jacob's song of the day (11/13/2015): "Put a Little Love in Your Heart" by Jackie DeShannon

It's World Kindness Day today, so I picked a perfect song to celebrate the day with - "Put a Little Love in Your Heart" by Jackie DeShannon. Have a listen and read why I picked this song today:

"Think of your fellow man/Give him a helping hand". That's exactly what kindness is about. Little things, kind words and sweet gestures can make a huge difference in someone's life. We all need some type of help every now and then, and sometimes that help can come from the most surprising of places. One tiny gesture can have a huge impact on someone's life.

Kindness is love. It's a love for the world and wanting to do everything possible to make a difference, to be a change maker. If I were to die tomorrow, the thing I would want most is for people to remember me for being kind and making a difference in this world. There is far too much hatred that makes the front pages of our newspapers and becomes the leading story on the news. It's time for this to change. It's time to push for the wonderful things that can come out of helping one another instead of beating each other down. It's time for kindness.

Sometimes when I'm feeling my absolute worst and in the hospital, these little acts of kindness from the staff, or volunteers, or even other visitors complete my day. I can remember being admitted to the hospital for Easter and one family went and bought little Easter treats for all of us patients. Even if I couldn't eat it, it was an amazing act of kindness that made the most out of missing yet another holiday. It brought a smile to my face and it still does just thinking about it.

I hope that Jacob's Healing Rooms can help to inspire others to make a difference in their world. It all starts with a little seed of hope and a dash of inspiration. And every one of us are capable of doing something great. How will you show your kindness?

"And the world will be a better place/For you and me/You just wait and see"

Jacob's Song of the Day (11/12/2015): "One Love" by Marianas Trench

Today's song pick is from a band that I've come to love. I wanted to see them when they performed live over the summer (for free!) at the PanAm Games, but I was too sick to be able to stand outside. My song pick today is "One Love" by Marianas Trench.  Have a listen and read why I chose this song today:

I've written about how music is important to my healing process, it distracts me, changes my mood, and inspires me to move when I really don't feel like it. Going to concerts has been pretty amazing. I know that some people out there are like "Really? An 11 year old going to rock/hip-hop/pop-punk concerts?!" but for those 3 hours that the bands are on stage, it's like being in a totally different world. Most of the time at least (I've had to cut two HUGE concerts short because of my health).

So today I'm super-excited because I just found out that Marianas Trench is coming to town and my mom has the pre-sale password! I wish that we could get the Meet & Greet package for these guys, but I'll be happy just to be there. Which means that I got two amazing concerts in my hometown to look forward to in the spring.

I'm kind of glad that these concerts sell tickets so far in advance (concert for them and Hedley is in the spring). It gives me something to look forward to, something that pushes me through the day to get me one day closer to something great. While I try to stay focused on the present moment, it's always nice to have a short-term goal to work towards in the future. It reminds me that there are brighter days ahead to look forward to.

This is just the sort of thing that I mean when I talk about the power of distraction in children's medicine. When I have something else to focus on, to look forward to, all of the medical stuff doesn't feel so "heavy" and the days don't feel as tortuously long. 8 hours of staring at the paint-chipped walls doesn't make the day go by faster. This is why I want to make Jacob's Healing Rooms a reality, so that other kids getting their IV outpatient treatments can have a place where they are distracted however briefly from reality. A place where they don't feel that a sense of "please just let this be over" or ask "Can we go home yet? How much longer?". I want a place where parents can feel that they too can relax and just be with their child, rather than worrying how they're going to keep them distracted. I want a place where even sick children can feel like just plain "children" again. A place where the staff are excited to work in, that can even inspire them to even more greatness.

It all seems like a pretty simple idea, right? But none of this will be possible without your help. Please help support Jacob's Healing Rooms, follow me on my Twitter account (@KidWithCrohns) and consider making your $1 donation to help make my dream of helping sick kids come true.

*To DONATE to JACOB'S HEALING ROOMS please click HERE*

Jacob's Song of the Day (11/09/2015): "The Show Must Go On" by Queen

Even when everything in life seems so wrong, it's important to keep moving forward. Today's song is the perfect one to remind us all that life does continue, "The Show Must Go On" by Queen. Have a listen and read why I chose this song today:

This is a big week for me. On Thursday, I go to the GI doctor to get back my biopsies and the results of the latest set of scopes. I'm hoping that the doctor can come up with a new plan to help make my symptoms a bit less interfering in my life but at the same time I'm worried that nothing will change. And I need a change. 

I'm not the easiest patient. My body likes to give funky reactions to a lot of treatments. A lot of treatments just don't work. There is no easy fix to get me back to wellness. It's frustrating for me, and I'm sure it's frustrating for the doctors when their amazing plans start to fall apart. I'm sure that my complaints get "old" since I repeat pretty much the same thing at every visit. But my complaints are important in my life. I want to be able to go to school, go hang out with friends but those things are pretty difficult with how I'm feeling. I'd love to be able to go back to Scouts and be able to participate. I need a treatment plan that's going to help me get back on my feet with some amount of quality of life again. 

The show must go on. Regardless of what happens later this week, the show has to keep going on. Today is the perfect example. I had an interview with my local newspaper today and was in tears 10 minutes before it was scheduled because I was feeling that horrible. I even told my mom that I might need an ER trip today. However, since the show must go on and this interview was super-important, I decided to put on my best acting skills and pretend that I could actually get through. I had a fantastic time talking all about the ByStander Revolution anti-bullying campaign, Crohn's & Colitis Awareness Month, and Jacob's Healing Rooms. It was proof to myself that I can still work to make a difference even though I'm feeling so rough. 

"I guess I'm learning/I must be warmer now/I'll soon be turning round the corner now"

Jacob's Song Pick of the Day (11/03/2015): "Heavy" by Emblem3

Today's song is inspired by the challenges that we all face in our lives. For today, I have picked "Heavy" by Emblem3.  Have a listen and read why I chose this song today:

"I knew from the start, the start/All of the struggles that we go through/They may scar my heart/But in the end, it's what will make you".

It doesn't matter whether you are going through health challenges, money challenges, relationship challenges, we all have our own struggles. Some struggles only stay a short time before changing, but other struggles can stay with us for our entire lives. These challenges bring out certain characteristics of who we are, they shape us into the people we are today. How you work to overcome your challenges can be defined as Resilience. The wonderful people at the BystanderRevolution.org/@BystanderRev (on Twitter) were quite touched by the sharing of my story that they honored me with one of their Upstander Awards:

My home nurse and I were chatting today about how crazy a journey it's been with my Crohn's Disease and heart issues over the last 3 years. I've gone through medical crisis after medical crisis with only short-term solutions to try to find something that would get my Crohn's under control. She said that she knows Crohn's is very difficult to live with, but that I'm by far one of her patients who has had the most struggles with it that she's worked with in awhile. Truth be told, it is hard to cope when your disease is so resistant to treatment. Participating in various campaigns and donating my time to help others is something positive I can do that helps me escape all this day-to-day "stuff" that I would love to be able to completely ignore. Sitting sick at home has forced me to connect with others in a different type of way. Making new "internet friends" and spreading the word about giving, hope, and courage has become my new daily "thing".

There has been something great to come out of all of this. I'm reaching more and more people with my story everyday, which helps to spread the word about my #beforeIdie wish to help make a difference for other sick kids by creating child-friendly IV treatment rooms. It's come up to one year since I started making plans for Jacob's Healing Rooms, and all of the work, the frustration at not being able to find words and make sentences is finally starting to take off. I'm so excited to continue to help inspire others through my charity work.

The Power of $1

Stay tuned at the end of the post for my song of the day.

Who is a hero to you (alive, dead or fictional)? I've been inspired by a few people I consider heroes but likely the one who has had the most influence on me and who I am, would be Terry Fox. Terry went to sleep one night as a kid who had cancer and a dream, and woke up a hero. He inspired a nation to get involved, to use their voice to demand a change. He continues to inspire kids today as we remember what he did. He showed us that it only takes ONE PERSON to make a change. It takes one person to inspire a nation and remind them that anything is possible. I try everyday to be like Terry, this is how I want to be remembered.

On December 1, 2015, Jacob's Healing Rooms will be participating in #GivingTuesday, an initiative to help inspire the world to support their favorite charities. CLICK HERE to visit my GivingTuesday site. I've been inspired by Terry Fox's wish to collect $1 from every Canadian. $1 doesn't seem like a lot, but it's actually quite powerful. $1 can buy you a superhero's power - the power to change the world.

As I was looking at my blog stats the other day, I got to thinking about the number of people that come across my blog postings. If I asked for a $1 donation, the cost of a small coffee, my goal of raising $60,000 would be met quickly. Your $1 would be so powerful and would make a HUGE difference.

$1 could bring a seriously sick child happiness, laughter and hope while they are receiving IV treatments for different illnesses. Your $1 could help a young person connect to other hospital patients their age across Canada. Your $1 could entertain and distract a patient from their pain and all of the medical stuff that goes with treatment. Your $1 could inspire others that change is possible, and a single person can make a difference. Your $1 would remind people to dream big and never give up chasing their dreams.

Most of all, your $1 can give a child hope for better days ahead.

Please help me make my wish of helping other sick kids come true. Consider making a $1 donation to Jacob's Healing Rooms at Sick Kids Hospital and help me spread my message to others! To make a donation please click HERE.

Now for my song of the day - "I Need a Dollar" by Aloe Blacc.