Friday, October 30, 2015

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.

Thursday, October 29, 2015

Jacob's Song of the Day (10/29/2015): "Empathy" by Alanis Morissette

Today's song of the day is inspired by walking a mile in my shoes. It's "Empathy" by Alanis Morissette. Have a listen and read why I chose this song today:

We're all allowed to have bad days, and we all will have bad days. My mom says that "it's how we rise to meet our challenges that defines us", I think she might be on to something.

Every day seems to be a challenge for me right now. I go to bed desperately hoping to wake-up and things will have changed, only to discover that the change wasn't in the right direction at all. I wake up with tears in my eyes wondering how I'm going to make it through the first hour of the day never-mind talking about any evening plans. Even though I have an extremely short 1.5hr school day, I haven't even been able to make it there this week. I tried today because the class has nominated me for the Empathy award, and I didn't want to miss it because I really appreciated them thinking of me. Especially since it's almost November and I haven't put in a full day of school yet this year (or in a full year!). I didn't make it to the assembly.

Empathy is defined as "the ability to understand and share the feelings of another". At first glance, you're like "ok, that sounds so simple", and maybe it is in natural day-to-day situations. But my situation is anything but ordinary, which starts to complicate the idea of empathy. Sure, you hear me (or read me) talking about my Crohn's Disease symptoms, my heart issues, my experiences of bullying. Those are things that I can talk about without really talking about my feelings. I'm afraid that if I did show my feelings that I could easily shatter there's just so much there. But in order to have empathy, we can't be afraid to tell the truth about our feelings. 

The truth is most days this disease sucks. Yes it has taught me a lot about life, about who I am as a person, about compassion for others, but the cold hard reality is, I feel physically horrible. I stay positive, just looking at my blog you can see that, but that doesn't change my nasuea/vomiting, my bleeding, my pain and exhaustion. I want so desperately to achieve remission, but everyday it seems like such a distant dream. I keep holding on to the hope though that one day this will be possible for me too. 

I want to have a chance to do normal kid things. This weekend is Halloween and I want to be able to go trick-or-treating. If today and yesterday are correct at predicting the near future, I'm not sure I'm even going to be able to get out the front door. It actually brings tears to my eyes to even think about Halloween. And while I do want the candy, I just really want to get out there to do something that all of my friends are doing. I'm terrified of letting others down on holidays like this, or Christmas Days when I have to go back to bed, or Easter weekends when I'm hospitalized. 

Without my NG Feeding Tube taped to my face, I look normal enough. People comment on how good I am looking, how "healthy" I look with the weight gain. What they don't realize is that I have vomited blood and continue to have tiny bleeders in my stomach. That the moment food hits my stomach, anything can and does happen. That the pain in my legs wakes me up in tears at night. That my insides were at one point so messed up, that they were considering another major surgery which would have had dramatic consequences. They don't know that the weight gain isn't "healthy", it's from some unknown cause because I'm not eating and no longer getting all my daily calories through my tube. I'm thankful that I look good but it's 100% not an accurate picture of how I feel.

I'm hoping that by sharing some more of my experiences with Crohn's Disease that I can help to create some more empathy in this world of ours for people living with chronic disease. While you can't walk a mile in my shoes, and I wouldn't want you to, you can learn about what it might be like to have this be your reality. After all, the only way to encourage empathy is through awareness and you need awareness to create empathy. Please don't stop trying to understand the lives of others, together we can come together to make this world a kinder and more supportive place!

Wednesday, October 28, 2015

Jacob's Song of the Day (10/28/2015): "Shake Your Euphemism" by Blue Man Group

Today's song is one to make you laugh, "Shake Your Euphemism" by Blue Man Group. Have a listen and read why I picked this song today:

What's your favorite butt euphemism?

Everybody needs a little laughter sometimes, it helps to make the "crappiest" of situations better. I've been feeling extra-super-duper sick these last couple of days and my nausea meds aren't working as well as they should be. It's no big surprise that I'm feeling like my stomach wants to throw a revolution since we know from the scopes that it's inflamed. Halloween is coming up too quickly and with my nausea/vomiting, and having a complete lack of energy, I'm not even sure I'm going to make it to the next door neighbors, never mind the neighborhood block. So it's a bit of a down day.

Or it at least it was until I came across this song. This is perfect. It made me laugh to the point of tears and worrying that I'd never be able to catch my breath again. It took a dark day and just put the power of the sun into lighting it up. And it's also oh-so-appropriate.

November fast approaches and it will be Inflammatory Bowel Disease (IBD) Awareness month. Nobody talks about their butts, it's just not a topic of conversation. It needs to be. When researchers look at the average age when a person receives an IBD diagnosis, the fastest growing age group is among children. This becomes extra scary when you consider that individuals living with IBD are at a higher risk of developing GI cancers. The younger you are when you get your diagnosis and the longer you have active disease (not in remission), the greater your chances of developing these cell changes that can lead to cancer. We need more awareness of this disease and just how serious it is. And in order to do that we need to talk about our butts. I'm honored that this November, Crohn's and Colitis Canada has asked if I would be interested in giving media interviews about my experiences. My story of living in a constant flare of my Crohn's Disease for the past 3.5 years clearly points to the need for more research into finding out how to cure it. It also makes me feel like I'm doing my part to push along much needed research and to build some compassion and understanding in the world for people living with this disease.

I can't cure IBD, but I can make the treatment experience better for other kids with the disease while we wait for the cure. I can bring laughter, happiness and hope to make the treatment rooms a child-friendly place of healing. Please help me make my wish to help other sick kids come true, support Jacob's Healing Rooms.

*To make a DONATION to JACOB'S HEALING ROOMS please click HERE*

Tuesday, October 27, 2015

Jacob's Song of the Day (10/27/2015): "Fix You" by Coldplay

Today's song is inspired by a love so deep that you'd do anything, give anything to make a difference. It's about being those little lights that guide you through a long, dark tunnel. We all have our tunnels that we go through on our journey, and it's those little lights that make all the difference. Today's song is "Fix You" by Coldplay. Have a listen and read why I chose this song today:

Sometimes everything seems to be going wrong. Living with multiple chronic, incurable illnesses is not easy, especially as a child. I was diagnosed with epilepsy when I was 3, and since then have added severe refractory Crohn's Disease, severe psoriasis covering 70% of my body (thankfully, it's under control with my medications), ADHD, anxiety, Long QT Syndrome (an electrical heart problem). Then there's the complications - like pneumonia from having no immune system, joint and bone pain, nausea and vomiting, headaches, extreme fatigue. At 11, this is my life.

There is no "fixing me", I'm not broken, I'm sick. But there is something you can do to fix the situation. I'm asking you to stop and think about how you might be able to make a difference in someone else's life. How could you become someone else's "little light" in the tunnel? What if, by smiling and saying hello to a stranger, you helped to save a life? The smallest of actions can make a huge difference in someone's day. It could be the one thing they needed to change their life for the better. I have a lot of "little lights" in my life, most of them are complete strangers. When I need a reminder that I'm not alone, they are there with the words of encouragement. It might seem like such a simple thing, just to offer a smile to a stranger, but try it out. Offer kindness, and see what happens.

I'm going to be a little light and try to bring that support to other sick kids like me. I want to bring hope, light and laughter to the outpatient treatment rooms. I want these treatment rooms to feel like coming out of one of those long, dark tunnels into a place where anything is possible. Where they can feel that they are treating more than just the disease, they are also treating the emotional side of chronic sickness. Please help me make my dream of helping other kids come to reality and consider donating just $1.00 this Giving Tuesday (December 1st, 2015).


Monday, October 26, 2015

Jacob's Song of the Day (10/26/2015): "Happy" by Pharrell Williams

Today's song, "Happy" by Pharrell Williams is in honor of another special person who has come into my life. Have a listen and read why I chose this song today:

What are the things and who are the people that bring happiness into your life? What makes you so extremely happy that you want to dance through the city like Pharrell does in this video? Do you have a happy dance?

There's a clown that has come into my life during my journey with Crohn's. He's part of the hospital's Clown Posse, a therapeutic clown who goes around trying to spread joy to seriously sick kids. Meet A. LeBoo:

It's only right that there happens to be a Superman poster in the background, this man really is a Superman. During his weekday afternoons hospital show (on tv throughout the hospital) he can often be found smacking eggs against his head in the "Boiled or Not" game, or having things rolled down a slide, into a bucket of water to create the biggest splash to soak him. He remembers everything about the kids he meets, so even if you meet him again after several months, he still knows all about you. He often comes to my room when I'm admitted and spends some time just chatting it up. No matter how bad I might be feeling, just hearing his voice coming down the hall cheers me up because I know I'm in for some fun. It takes a very special person to do what he does and to do it so well. To be able to enter a hospital room where the kids are extremely sick and see the kid for who he or she is instead of their disease, is amazing. I love seeing my clown on his daily visits, in fact, he's the one thing I miss most about the hospital when I'm not there!

A. LeBoo has helped me so much and reminds me of the importance of laughter and happiness in the medical world. Sometimes, even at my age, you just need to have a good bubble popping session, or need to make things disappear and magically reappear. Sometimes you need to make some jokes about your disease (and there's no shortage of them for intestinal disease!). Sometimes you need to be distracted while nurses poke and prod you or jam things into you. Everyone can use a good "silly time" every now and then!

This is what I want to bring to Jacob's Healing Rooms, I want to bring laughter and happiness to an otherwise nasty part of our lives as sick kids - treatment days. Laughter and happiness can inspire hope and help speed up healing, it can inspire us to continue to fight when we feel like everything is working against us. If you are happy, you're like a peaceful warrior and tend to focus on more of the positive, happier things in your life. This takes the focus off how all the negative things can quickly snowball and helps to not let the disease have such an impact on your emotional well-being. I want to help brighten the spirits of other sick kids by updating the outpatient treatment rooms to make them child-friendly. In order to do this, I need your help. Please consider making a donation to support my #BeforeIDie wish to help make a positive difference.

*To make a DONATION to JACOB'S HEALING ROOMS please click HERE*

Sunday, October 25, 2015

Jacob's Song of the Day (10/25/2015): "Just Keep Breathing" by We The Kings

Today's song is going to become my mantra to get me through the next few weeks. I've chosen "Just Keep Breathing" by We the Kings. Have a listen and read why I chose this song today:

Mantras. Little sayings of encouragement that help to lift the spirit and brighten the day. If we look close enough, they're everywhere. The movie Finding Nemo has "Just Keep Swimming" as it's mantra, or there's others like "Hold Your Head High" and "Shoot for the Stars". This mantra is a bit more basic, "Just Keep Breathing".

Sometimes it does feel like everything is falling apart. Sometimes you just want to sit down and shed a few tears. Sometimes the things that you have to do in a day seem to be so overwhelming that you're just not sure how you're going to get through. And then you do. Just Keep Breathing. Things change in an instant and can be so confusing that it's dizzying. It's ok, just hold on for the ride. We often compare my journey to a rollercoaster. Sometimes we go for a long, steep hill down, and then we can make a slow climb up before the next little obstacle comes along and then down we go again. My rollercoaster is pretty crazy, it does loop-de-loops, goes backwards, has 180 miles an hour to a complete stop several times during the ride... it's the most extreme, breathtaking ride imaginable full of so many twists and turns that it's hard to follow the where the path is. I'm really hoping to his a long flat part soon, to be honest.

Just Keep Breathing. Sometimes we need to slow everything right now to the basics. Sometimes we need to go back to just focusing on letting go and breathing. Some days we just need to remind ourselves at several points through the day with our mantra. What's your mantra today?

A Game of "Telephone" and it's for sure Broken!

For those who are new to Jacob's Healing Rooms - I'm Jacob, I'm 11 and I live with severe Crohn's Disease (as well as a few other medical conditions) and an ostomy. I'm told that my disease is refractory - meaning that it doesn't respond to the treatments they've tried. Yesterday was a trip to the OR to find out if the Stelara injections I'm taking in hopes of ending my 3.5 year flare, and to hopefully get an explanation for the increased Crohn's Disease symptoms I've been having since late spring.

There's a game in kindergarten that we used to play called Telephone. Person 1 would come up with a "message" and the message would be whispered from one kid to the next until it got back to the teacher who would say it out loud. It was very rare that the message was the same as the original version. One of the downsides of having a lot of different specialists involved in my care, even within the same department, that there is a greater chance for errors in communication to take place. Communication is key to improving my health. For example, a few of the dermatology drugs can be used in Inflammatory Bowel Disease treatment, so any changes my dermatologist wants to make for my psoriasis could impact on the IBD, and vice versa. All of my treatment providers (neurologist, cardiologist, dermatologist, GI, dietitian, pediatrician, surgeon) need to be kept in the loop as to "what's going on with Jacob this month". Even within the department, I rely on my messages to be relayed accurately to each member of the GI team involved in my care (nurse, fellow, GI). But the more players involved, the more this line of communication has the potential to be messed up. It happens more than you would think. Friday's Operating Room trip is the perfect example of the necessary information being relayed accurately.

Things started well. The blood lab had the forms for the requested pre-op blood work, so, all was going as planned. I got ready for the procedure and was waiting for the OR nurse to do my final pre-op assessment. When she arrived she read off the chart "so you have a diagnosis of Ulcerative Colitis". Umm, no. I have a diagnosis of Crohn's Disease, which is an Inflammatory Bowel Disease like Ulcerative Colitis but can effect the entire digestive tract from the mouth on down. Ulcerative Colitis tends to be restricted to only the colon, and considering I haven't had a colon for almost 3 years... I have Crohn's. I'm sure it was a sign of the way the day was going to be. Thankfully, my mom has more patience than I do and politely corrected the diagnosis.

Then it was time for the GI doctor that I've never met to come out to talk to me about the procedure. Not that I need to have it explained, I've been through it only a dozen times. Literally. You know it's going to be an interesting day when the doctor doing the procedure had the wrong reasoning relayed to him/her. "So you're here today to have a look to see if we can do a reconnect surgery (JPouch)". Whoa. Wait a second. At no time in the past several clinic visits have we talked about the JPouch surgery. It's often not recommended for people who have severe, uncontrolled Crohn's Disease because if you develop Crohn's in your JPouch, you'll be losing more intestine (and we need all the GUTS we can get. Get it? - Sorry for my sick sense of humor). In fact, when we had looked at this possibility over a year ago, the surgeon had said that he would NOT do it and would highly recommend that I don't find someone else to do it. It was absolutely confusing to both my mom and I why we were all of a sudden talking about a surgery that has been turned down and never again discussed. What really should have been communicated is "we are here today to see how well your medication is working for you and to see if we can find an explanation for your continued symptoms". That's only a bit different than the surgery reasoning. Then, the doctor had asked to have my NG (nasal-gastric) feeding tube to be replaced which I was under, because I have extreme anxiety of anyone shoving anything up my nose and into my stomach. No Ng Tube was sent down to the OR, so they had to go hunting one down.

I had the procedure and the OR Nurse in the Recovery Room prepared my Discharge Notes. There was a key piece that hadn't been communicated - I was supposed to be admitted after the procedure for cardiac observation. The nurse had to call around to find out if this was indeed the actual plan.

When I did get to my room, there had been a lack of communication in ordering my Feeding Tube formula, so I had to go without. Not really a big deal, since I went home the following day, but if the original plan had been followed through on - to keep me for a few days after the procedure - it would have been more of a deal.

Communicate - the act of sharing messages between individuals. It's one of our basic human needs. In healthcare it's an absolute necessity. I rely on my healthcare providers to help me get back to being the best Jacob I can be (at least physically). If the communication within the department and then with other doctors isn't accurate, then it's my health that suffers. I need my specialists' medical help. I need them to communicate their plans to me in detail and with other departments that their changes might effect. I need to be able to participate in my health care and communicate my experience, since I'm the one living this disease. And I need to make sure that my experience is really heard.

I'm trying to stay positive. I'm trying to focus on the bigger picture. I'm enjoying working on my fundraising project and making some really great friends along the way. And that's what the bigger picture is all about - seeing the world and the difference that you can make and going for it. Hopefully I'll have a better health update soon!

And a HUGE THANKS to everyone who continues to offer me their support. It means everything. It really does. Every message I receive helps me to keep my spirits up, so thanks for sharing so much kindness with me.

Saturday, October 24, 2015

Jacob's Song of the Day (10/24/2015): "Cheerleader" by Omi

Today's song is inspired by the effects of cheer and happiness. I have picked "Cheerleader" by Omi. Have a listen and read why I chose this song today:

I absolutely love the trumpet solo in this song. It just makes my spirits go sky high!

Cheer. It's something that inspires, that encourages, and that makes us feel good. We all need some Cheerleaders in our corner. Do you have any special cheerleaders in your life?

I do. Every person who reads my blog, reads my tweets or clicks like on my Facebook posts is a cheerleader to me. They make me feel special when I most need their support, they go out of their way to tell me that they care. Yesterday I received so much support from "my cheerleading squad" while going through surgery #13 that it made me feel so special. It made me realize that simple words of encouragement have so much power to turn someone's day completely around. A kind word can make a huge difference to someone who is struggling. And we all have this power to spread kindness. We all have the power to become one another's cheerleaders.

I think of myself as being like a cheerleader. I'm hoping to spread cheer, encouragement and hope to other sick kids. I'm hoping that the changes that I make to the outpatient treatment rooms at the hospital will help these kids feel special while receiving their IV treatments. I'm hoping that by spreading messages of kindness and anti-bullying I can make this world a bit nicer of a world to live in and let others know that I'm in their corner. I want to be able to say at the end of the day that I made a difference in this game of life.

Thank you for being there to cheer me on with this journey!

Friday, October 23, 2015

Jacob's Song Pick of the Day (10/23/2015): "Fight Song" by Rachel Platten

I've been sitting on this song for awhile, waiting for the "perfect time" to use it in one of my song of the day posts. It's a song that when I first heard it, I knew that it was something pretty special. Today's pick is "Fight Song" by Rachel Platten. Have a listen and read why I chose this song today:

Today is a HUGE day for me. I'm about to be wheeled in the Operating Room for the 13th time in 3 years. This will be the first time I've been sedated since they discovered that I have a heart problem. It's kind of scary, but I know that they're going to be watching me very carefully before and after the procedure. I'm having a set of scopes, a little camera that is inserted into various holes in your body, and biopsies at the same time. In Inflammatory Bowel Disease, sometimes the only way to tell what's going on with the insides is to go in and have a look. They are going to see whether the Stelara is being effective at calming down the inflammation and allowing for healing to happen. I want the Stelara to be working so bad. But then if the Stelara is working, then that leaves a lot of unanswered questions about why I'm feeling the way I am. Why I'm having bleeding episodes, why I can't eat solid food (I have an NG Feeding tube), why I'm having pain. It's hard to explain the feeling of being stuck between wanting both sides, which seems pretty near impossible.

Do you have a pre-"big day" routine? Something that you do before you have to go do something really big? My big day routine usually starts with my mom and I having "silly time" and taking some silly pictures together. We come up with some pretty corny health related jokes, I'll spare you from hearing them. We try to keep the mood light, listen to some of our favorite bands, launch into debates about unanswerable questions (What was before the singularity that caused the Big Bang? What if we could download our every thought?). We're even cracking jokes right up until the big moment.

Why do we have pretty much a silly day? Because it's part of our plan to fight this disease. I have to be able to laugh sometimes about the craziness that has made up the last 3 years. There's a saying "If I didn't laugh, I'd cry", well that's the case here. Sometimes it does feel like nothing is going right. I've had nights where I've woke up crying in pain from my joints and bones, then in the morning have episodes of spontaneous ejections of pre-digested something out of my mouth, have my ostomy bag fall off and not be able to stick on again due to a sudden reaction and all before 9am. The only thing you can do in situations like that is to laugh, because otherwise, you'd never stop with the tears. There is power in laughter. I know that when we start cracking jokes, all the problems seem a bit less extreme. It changes my day around. We all need a smile and a laugh sometimes.

So as I'm being wheeled into the OR, I'm going to be thinking of my Jacob's Healing Rooms project and how much laughter it is going to bring to other sick children. Because that thought will definitely be one to encourage some great dreams while I'm sedated and make me fall asleep with a smile.

"This is my fight song/Take back my life song/Prove I'm alright song/My power's turned on/Starting right now I'll be strong/I'll play my fight song/And I don't really care if nobody else believes/'Cause I've still got a lot of fight left in me"


Thursday, October 22, 2015

Jacob's Song Pick of the Day (10/22/2015): "Learnalilgivinanlovin" by Gotye

Today's pick is inspired by something very important to me, spreading kindness and inspiring others to come up with their own way of making a positive difference in this world. Today's song is "Learnalilgivinanlovin" by Gotye. Have a listen and read why I chose this song today:

"What's the use of keeping/all the good things that you've found to yourself?/Learn a little, learn a little/Learn a little givin'/Learn a little, learn a little/Learn a little lovin'" This song's lyrics are so powerful. Did you know that by giving to others, not only helps the person you're giving to, but it also makes you feel good? I know that on my bad health days helping others distracts me from the pain and reminds me that I'm doing something positive with my life. Every "like" or "favorite" that I get on a post, a very simple thing to do, makes me smile a bit bigger. Every "like" means that I have touched someone's life, and that's all I can ask for. I couldn't ask for anything better than knowing that I made a difference.

On Tuesday December 1, 2015 I will be participating in GivingTuesday, a day to encourage others to donate to their favorite charity and help make a positive difference in this world. I hope that you will consider supporting Jacob's Healing Rooms at The Hospital for Sick Children (Sick Kids), my wish to help other kids who are sick. Jacob's Healing Rooms is raising funds to create child-friendly outpatient treatment rooms to help inspire hope and healing. Together we can make a difference in the lives of these kids!

*To make a DONATION to JACOB'S HEALING ROOMS please click HERE*

Wednesday, October 21, 2015

Jacob's Song of the Day (10/21/2015):"Back to the Future" conducted by Alan Silvestri

Today's song is in honor of a trilogy of movies made way before I was born, but that I have just come to enjoy - "Back to the Future" as conducted by Alan Silvestri. Have a listen and read why I chose this today (other than the obvious!):

Today is the day that Marty McFly dreamed of in the future. What do you see when you think to the future? What are the big things that you want to see changed, the things that you want to see created? How do you see the problems of the world changing in the next 100 years?

I know what I want. I want a world where there is no such thing as an incurable disease. A world without frequent bloodtest pokes, IVs being inserted and then just as quickly blowing, and failed treatments. A world where people can get easy access to affordable medications and treatments, so that they don't have to worry about poverty along with their health. A world based on understanding, compassion for one another and respect for everyone regardless of "what" they are. A world that doesn't put labels on people, but recognizes each person as an individual. I want a world where you can be free to be who you are without any fear.

My mother and I debate fate and destiny all the time. I believe in fate because I believe that each individual is here for a reason. I believe that I may have been meant to go through this so that I could take the lessons learned and help others. But I also believe in the power of choice in your actions. You can choose kindness at any time. Kindness can be as simple as holding the door for the next person coming through, or smiling at someone and saying "hello". Those small actions just might make a BIG difference in someone's day. Consider ways of paying forward other people's kindness, if we spread one kind action a day, our world could be that much more amazing. I hope that my Jacob's Healing Rooms project will inspire other people, especially kids, to make a positive change in the world in their own way.


Tuesday, October 20, 2015

Jacob's Song of the Day (10/20/2015): "Just Feel Better" by Santana featuring Steven Tyler

Today's song is inspired by how I'm feeling physically. I picked "Just Feel Better" by Santana, featuring Steven Tyler.  Have a listen and read why I chose this song today:

I am not having a good day today, at least physically. I have been having a lot of pain in my legs lately, and this morning I was in tears trying to push down the pain. When that's added to the fact that I have been taking the maximum amount I can of nausea meds and am still being sick, it's a recipe for disaster. I've figured out that it's now been a year of struggling with intense nausea and vomiting. Everyday for 365 days I have thrown up. It's getting to the point where I don't even remember the times that I don't have nausea. It's just one of those symptoms that goes along with having the Crohn's in the part of the stomach and intestine that set up the perfect conditions for it to be a problem. I've tried ginger, tea, acid blockers, meditation, Gravol, Zofran and now Ativan but even that is starting to lose it's effectiveness. I just want to feel better.

Today I accept that I have limitations. I forgive myself for not being able to do more, for not being able to do what I want, but I also know that tomorrow is a new chance for things to change. Tomorrow I might feel stronger. Tomorrow I might just feel a bit better.

A Letter to the Bullied Child

Today's Bystander Revolution challenge was issued by Melissa Joan Hart - to talk to someone younger about bullying, and give them some suggestions on how to deal with it. I'm going to do an announcement at school, but I also have a message to share with my past self, with the hopes that it might help someone else who is being bullied right now.

Dear Self of the Past,

It's me, your future. I see the pain that you are in right now. I see your fears of what the next day at school is going to be like, and wondering how much worse it's going to get. I can understand how you might feel that the whole world is against you, and that the weight of the world is sitting on you. I see the happiness that you once shared with everyone slowly being replaced by sadness and tears. I hear your thoughts of "please just let me invisible". I even see your deepest fear of not being good enough, not being worth it.

I'm sorry that you're living this, that you're experiencing the worst that people have to offer. I want you to know that you don't have to worry about taking the risk to meet new people, not everyone will be mean. You can take a chance and come out of your shell. There are some awesome people out there that you will meet, and you'll start to see that kindness overpowers bullying every single time. Even when you feel like no one is in your corner, there are complete strangers out there who care and are sending you nothing but the best of wishes.

I want you to know that you don't have to stay silent. You've been told that you have nothing of value to say, but I can tell you that your words matter. They will matter a lot in the future. Your bullies have tried to squash your voice like a steamroller. It's not because you're "stupid", or "a moron", or any other names they want to call you, it's because they just can't understand your fantastic ideas. It takes power to use your voice, and I know that you have that power in you. Don't be afraid to let it out and never let someone else tell you that your voice doesn't matter. It really does. You will go on to use your voice for great things. Don't be afraid to ask for help, it comes from the most unexpected places.

I want you to know that you are worth it. You are someone that matters, we all matter. You're worth someone taking the time to get to know. Very soon you are going to make some plans that you hope are going to change people's lives. You're going to help so many people with your experiences, both of bullying and living with a severe chronic disease. I know right now you feel absolutely powerless to the point of tears, but it's not always going to be that way.

I want you to know that you're going to learn soon about the person you want to become in the future. You're going to take your ugly experiences and make something beautiful from it. You feel the pain of bullying and you will remind yourself that this is the exact type of person you don't want to be, and you take action to do the exact opposite. You're going to learn that our days here on earth can be very short, so you will take action to change the world for the better. Your actions will be filled with compassion and you will practice kindness because you know that life could end at any time and you want to make a difference before that happens.

I want you know that it's ok to be different. You don't have to be ashamed of being gifted, of finding schoolwork way too easy that you're looking at university lectures online. You come up with some amazing science ideas that are way beyond the level of most kids your age. It's ok, you're going to see that there are other kids like you, and you're going to meet a lot of university kids volunteering at the hospital to be able to share your ideas with. Different is good. If no one "thought outside the box" then we wouldn't come up with solutions to problems. It's also ok to look different. Your medical problems will make you appear different, you will have tubes taped to your face from time-to-time and you'll wear a colostomy bag for life. You will need to go on and off steroids which will cause serious weight gain, as will some of the side effects of the medications. At first the kids will be mean as they don't understand what you're going through, but one day you're going to find that the majority of them are cheering you on with your journey. You will go on to inspire them, you just need to get through some rough patches.

Most of all, I want you to follow your dreams and never believe anyone who tells you that you can't. Make every day about proving that you can, and remembering that even the greatest of challenges can be overcome. Remember that every small step counts, and that even a single person has the power to make a big difference.

Smile and breathe. It's going to be alright.

Monday, October 19, 2015

Jacob's Song of the Day (10/19/2015): "Can't Quit" by My Silent Bravery.

Today's song is about finding the courage to continue on even though there may be huge challenges in your way. The song is "Can't Quit" by My Silent Bravery. Have a listen and read why I chose this song today:

I came across Matthew's music when he followed me on Twitter, and have become a big fan from the message of hope and inspiration that he shares. His lyrics are so honest and real that it touches my heart.

"And when the doubts creep in/And sneak into my head/I need to look within and change/The way I think". This is a big week for me. On Friday, I'm going to be wheeled into the OR for the 13th time. To add to the worry, this is my first sedated procedure since having my heart go haywire back in June. There's a lot of hoping and wishing going on this week, there's a lot riding on the outcome. We're evaluating how well/not well my last treatment option available to me is working. I'm worried. I so badly want to hear "it looks like you're in remission" but at the same time I need an explanation as to why I can't eat from the constant nausea, why I'm having such an increase in acid problems, why my weight keeps going up despite not being on any weight-gain causing medications and barely eating, why my outputs are climbing higher and higher, and why I keep having issues with bleeding. I need to feel like my concerns are being taken seriously, and for someone to take that initial step to do something to help make a change.

I want all of that stuff so badly, but none of those desires are within my control. What is within my control is whether I spend that time worrying or living. This week I'm going to focus my energy into Jacob's Healing Rooms, because giving kindness to others makes me feel better. Having a distraction from the reality of our lives as chronically ill sick kids, helps to make the days go by easier. Jacob's Healing Rooms will provide a great distraction for kids who are receiving outpatient IV medical treatments. Please help me to brighten the days of other sick kids.


Sunday, October 18, 2015

Jacob's Song of the Day (10/18/2015): "Hey Mama" by Kanye West

Today's song pick was inspired by the ByStander Revolution's #MonthofAction challenge to call out someone who's always been there for me. I've picked the song "Hey Mama" by Kanye West. I might not always agree with Kanye's actions, but when it comes to this song, I think he's right on the money. Have a listen and read my tribute to a special person in my life:

It must be hard to be a parent to a child who has complex medical problems. My mother does so much for me and is there for me every step of the way. She's a single mom who has given up everything for me. She used to work as a Child and Family Social Worker but now she's taken on so many other roles instead. When I've been admitted to the hospital for months at a time, and she's right there at my bedside 24/7. She's gotten over her fears and learned how to inject me with medicine, how to do bandage changes, and how to work IV machines. Even after the 300+ blood tests, needles and IV starts, I'm still "cautious" around needles. My mom is there to shield my eyes and to help me to concentrate on my breathing while the nurse digs around for my missing veins. Since I can only attend school for 1.5hrs each day, my mom has taken on the role of teacher. I think we are teaching one another since I often end up teaching her, especially math and science. My mom is my medical coordinator. I have 9 specialists involved in my medical care. With that many people involved, it's important that one knows what the others are doing and changes they're thinking of making. For example, if psychiatry were to change my ADHD medication, it could have a direct impact on what's going on with my heart. My mom is the one who sits for hours e-mailing doctors with updates, keeping the school informed as to my progress, and memorizing every single detail of my medical care. Having pretty much an appointment a week when I'm not in hospital and at times having long admissions to the hospital, my mom cannot work. But yet she always makes sure that us kids get what we need, and then gives us a few "extras". My mother is in the league of parent superheroes.

Did you know that hospital treatment rooms have an impact on parents too? My mom has often told me that walking into one of the treatment rooms feels like a heavy weight has been placed on her. Having me bored to tears in the room doesn't help her day to go any easier. She's already worried about me and whether the treatments are going to work, that helping me with my boredom and trying to distract me from what's going on, makes so much extra work for her. Jacob's Healing Rooms is about more than just helping sick kids have a healing place to receive treatment. It's also going to help the parents of these kids too. It can help to take the pressure and anxiety off of the day. I know that when I'm smiling, it makes my mom smile too. Please help me help bring smiles to sick kids, so that I can bring a smile to their parents' faces too.

*To make a DONATION to JACOB'S HEALING ROOMS please click HERE*

Saturday, October 17, 2015

Jacob's Song of the Day (10/17/2015): "I Can't Feel My Face" by The Weeknd

Today's song pick is inspired by something amazing that happened in a Tim Horton's donut shop yesterday. The song is "I Can't Feel My Face When I'm With You" by The Weeknd. Have a listen and read why this is my song pick today:

Even though The Weeknd is singing about love, to me this song has a bit of a different meaning, after all I'm too young to know about that type of love. To me, this song is about being so over-the-top happy that your face goes completely numb from all of the smiling. This happened to me yesterday at a Tim Horton's.

It started simple enough. After my family had ordered, I decided that I did want something after all and went to stand in line. The server gave me my change, and then something incredible happened. I donated my change to the charity box at the register, then went back to join my family. As we were leaving, the server came up to me with a gift card from another customer who had been touched by my simple act of kindness. You might think that this is the end of the story but it's not. Anyone who knows me knows that I'm always trying to think of ways to help others. That's why I'm blogging in the first place - to be able to help other sick kids on their treatment days.

This simple act of kindness inside a Tim Horton's has inspired me to pay it forward even more. Next week I will be going into Toronto for surgery #13. I've decided to make this stranger's amazing kindness even bigger; I'm going to give away my gift card to a person in need. It's a change the world with kindness type of thing!

*To DONATE to help make my wish to help other sick children come true, please click HERE*

Friday, October 16, 2015

My Response to "You Look Tired"

I've been sitting on something for several weeks now, unable to quite put words to my thoughts. Our society is so wrapped up in appearances, but I never thought I would feel that my ability to cope with my son's severe medical issues would be judged on the basis of my appearance. And it's happened more than once. Let me explain.

Several weeks ago, I had the chance to do something that I don't often have time for; put on make-up prior to going to an appointment. The specialist that we saw this particular day commented on the fact that I was wearing make-up and that I didn't "look so tired, so things must be going better with Jacob (my son)'s health". I chose not to say anything but thanked her for the "compliment". I brushed it off. Then I was in a meeting with a few other professionals in Jacob's life and one individual asked how I was doing and commented on how tired I looked without make-up and asked if I had a rushed day because I wasn't wearing anything to cover up my tiredness. 

That got me really thinking. How is it that in our society we have become so fixated on appearances that you think you can judge my ability to cope with my son's diseases based on whether or not I have make-up on? Did you stop to consider why I might look tired? Isn't it possible I'm tired from the fact that some nights, Jacob's IV feeding pump might beep several times? Or that I might have had to get up in the middle of the night to wipe tears of pain away, or to help with his nausea/vomiting? Could I be tired from trying to ensure that all the health care providers involved in Jacob's care are communicating, know what one another are doing, and all on the same page so he doesn't fall through the cracks. You see me for a brief time every few weeks/months. 

You see me at my worst. Every parent's worst nightmare is for their child to have serious health issues. You see me when I'm feeling completely helpless, on the days when hope seems so far away that you're left searching for a way to go on. When he's admitted, you see me at the end of the day when he's asleep shedding tears because I can't make this go away and I so very badly want it all to just disappear. You see me when I'm confused, frustrated and scared. Yet, I'm carrying on. I'm putting one foot in front of the other and taking those baby steps. I'm celebrating the small successes. But you don't see those happen because we want to address the problems that remain and are effecting Jacob's quality of life rather than the things we've already been through. You see us because we're coming to you for help, not because we're coming to you to brag about what we've done. You see us, but in reality, it's only a tiny part that you get to see. 

So in the future, take the time to consider the other person's situation before making judgment based assumptions. Take the time to consider that the person you're looking at has so much more going on for them than you can possibly know. Offer compassion instead of judgment. Kindness instead of pity. Most of all, offer understanding and encouragement for the better days ahead.

Jacob's Song of the Day (10/16/2015): "Life's What you Make it" by The New Electric

Today's song was chosen because of the amazing message it shares with the world. The song is "Life's What you Make It" by The New Electric. Have a listen and read why I chose this song today:

"Gotta aim high because life's what you make it". This is one of the basic things that living with a serious chronic and incurable illness has taught me. It would be so easy to throw my hands up in the air in defeat and go a bit off the deep end. I really don't think anyone would blame me if I did considering the journey of the past 3 years that still continues. I could easily let negative emotions like anger and bitterness take over me. I could somedays see running though the streets shouting at the world as a real option. But I don't. Somehow I take all of that negative stuff and just toss (most of) it away. Why? Because life is what you make it. I don't have control over the course my Crohn's Disease will take in the future, or the fact that the medication doesn't seem to be working. I can't control the fact that I will still likely face multiple surgeries in the future to add to the 12 procedures I've already had. But I can control what I choose for my life. I decide whether I choose the positive or allow the negative to take over. When it comes down to it, we're given a choice; stand and fight or give up everything. And in the end I choose to fight because there is no other option.

I'm aiming high, I'm aiming to change the world! "It all comes down to Happiness!"

Thursday, October 15, 2015

Jacob's Song of the Day (10/15/2015): "Little Victories" by Matt Nathanson

Today's song comes from a great guy to see in concert and someone who doesn't get near the attention in the media that he deserves, Matt Nathanson. Matt likes to interact with his audience during his time on stage, often calling people out for paying more attention to their phone than the artist who is trying to pour his heart out. He's got a wicked sense of humor that helps to make him such an entertaining guy on stage. The song I picked today was "Little Victories", have a listen and read why I chose this song today:

"And I'll learn to get by/On the little victories/And if the world decides to catch up with me/Still little victories"

We are all working to get somewhere, to achieve some type of goal. Sometimes our thoughts can be so focused on getting that end result that we can't see the little achievements that we've made along the way. This is so true for us living with an incurable illness. Sometimes we can only see how far we still have left to go on this journey. We can get so concerned with the "final product" that we can't see that we've already accomplished so much. We need to see these little victories. They are what make up our journey and shape our lives.

Yesterday I was talking with the teacher that the school has hired to follow me around in case I need immediate medical support, about what I've been up to. I told her about donating my hair to make a wig for kids with hair loss, about donating my colon to try to find a cure for Inflammatory Bowel Disease. I told her about being honored with The Jack Cornwell Decoration through Scouts Canada (the highest honor given to Scouts Canada participants who have shown great courage and bravery while undergoing serious personal challenges and still serving their community). Then I mentioned that I was a Sick Kids Hospital Ambassador, a representative of the IBD Clinic for their fundraising media, a proud supporter of the ByStander Revolution to get rid of bullying, and doing my own fundraising campaign, Jacob's Healing Rooms, to help brighten the spirits of other sick kids on treatment days. I think her mouth is still hanging open at all that I have done. But then when I thought about it all, it's almost like it's another person I'm thinking about. I couldn't possibly have done all that, could I? Why does it feel like I still haven't done enough, that there is so much more I could do when I've already done so much? I think it's because there's still so much more that I want to do to help others. This is what my life was meant for, I can feel it in my heart. But I also know that I need to celebrate the little victories more. And my biggest little victory is just getting out of bed each day, so I should celebrate each day that that happens.

Wednesday, October 14, 2015

Jacob's Song of the Day (10/14/2015): "Something Big" by Shawn Mendes

Today I chose a song that's been stuck in my head on and off for what feels like years. It's "Something Big" by Shawn Mendes. Have a listen and read why I chose this song today:

Do you ever get the feeling that you're on the brink of really scoring a major breakthrough with whatever it is you're working on/struggling with? Or that feeling that there's something bigger waiting for you just over the next hill? That's how I'm feeling today. I'm feeling hopeful and determined.

Yesterday, I had an "a-ha" moment, or as Einstein would say "Eureka!". I'm fundraising right now to make child-friendly outpatient treatment rooms at my local Children's Hospital (Sick Kids), but what do I do after I've accomplished my "Before-I-Die" wish? I'm only 11, so I know that there is so much more out there for me. There's so many people that need help in this world. At school, they make us read the newspapers for current events, and there's just so much negativity. It's rare that a positive story, other than the Toronto Blue Jays, makes front page news. That's why I was so surprised and thankful when my Jacob's Healing Rooms story was featured by my local paper. I think that positivity goes a very long way in everyone's life, and it is an absolute must for coping with a chronic disease. I know that if I had treated everything I've gone through so far with Crohn's - the 12 surgeries, the failed treatments, the complications of treatment - negatively, it would only make me miserable. And who wants to live like that?

So where do I go once I've seen my dream of Jacob's Healing Rooms come true? I'm not quite sure yet, other than knowing that it will be something to spread kindness, to give back to others, to encourage more positivity in this world. I'm still quite a ways from my fundraising goal of $60,000 (We're at $4400) to create child-friendly places of hope and healing, but I feel something big happening and it's really exciting. I know that whatever comes next, it's going to be just as awesome!


Tuesday, October 13, 2015

Jacob's Song of the Day (10/13/2015): "Welcome Back" by Bruno Mars (sort of)

Today's song is a bit different since it's not a radio-song or anything, just a few lyrics in the movie Rio 2. It's called "Welcome Back" and it's sung by Bruno Mars. Have a listen and read why I chose this song today:

For the month of October, I've been participating in a series of challenges aimed at getting rid of bullying and spreading kindness and friendship around the world. Each day +Bystander Revolution issues a challenge thought up by a celebrity. There have been challenges from Michael J. Fox, Lily Collins and Olivia Wilde to name a few that have been revealed so far. Today's challenge came from Shonda Rhimes, and it was to do something that is outside your comfort zone. It's perfect for the day that I am having.

Today was the first time in A YEAR that I've been back to school. Looking at this picture you wouldn't know it, but I was pretty nervous and scared. It's hard being away from the other kids for so long and then just to try to come back as though you'd never been away in the first place. At least in grade 4 and 5, I was showing up more regularly so it makes it easier to fit back in, but now that it's been a year... I was scared that I wouldn't belong. When I woke up this morning I just wanted to close my eyes and go back to bed that way I wouldn't have to risk anything. It's a risk coming to school, to wonder how others will treat you when you're appearance is "different". I was worried that the other kids might pick on me for my weight gain again, or that my feeding tube would make others stay away from me. I was terrified that I would never fit in again with my classmates. I guess in a way it was like starting a new school, but having stories of you going around the new school before you even start (so that everyone knows your name).

It turns out, my worries were pointless. I came, I saw, I conquered. I made it through my entire day without incident - although to be fair, it was only 1.5 hours. And you know what? The class was really excited to have me back! The teacher even made a special announcement to the class welcoming me back into the school. Kind of embarrassing, but kind of sweet too. I even made a new friend in my class, Griffin. I'm not allowed out for recess because the teachers might not know that I need medical attention if something does happen, but I had some friends stick around inside to play a quick game of Monopoly. As scared as I was, coming out of my shell and taking the chance that other people will still like me for who I am, had huge pay-offs. I came out of the day with a smile on my face :)

Having a serious chronic illness like Crohn's is difficult enough, but to be a kid living with it can be brutal at times. Staying hopeful, inspired, determined and connected to others is so important to coping with the emotional consequences of life with a chronic illness. These values are what Jacob's Healing Rooms hopes to be able to encourage in other children receiving outpatient medical IV treatments. By creating child-friendly treatment rooms, other sick kids can be helped to make their journey with chronic illness a bit brighter. Please support Jacob's Healing Rooms and make my wish to help other sick kids come true.


Monday, October 12, 2015

Today's Song of the Day (10/12/2015): "Thankful" by Kelly Clarkson

Happy Thanksgiving Canadian friends! In honor of Thanksgiving, my song pick of the day is "Thankful" by Kelly Clarkson. Have a listen and read what I'm thankful for this year:

It's been a difficult 3.5 years living with refractory Crohn's Disease, and it shows no sign of getting easier any time soon. But I look around at all the other kids who are at the hospital, and I'm thankful because things could be a lot worse. Yes, my medical options are VERY limited right now, but I know that research is being done so that this won't always be the case. I may not be able to physically do much right now, but at least I have the opportunity to do things. I know a lot of people look at what I've been through and say "he's got it bad" but there are so many other kids at the hospital that have it worse than me. I'm thankful that this disease has opened my eyes to see other people's suffering. If I hadn't developed Crohn's Disease I might never have learned first hand how under-supported this area of the hospital is compared to other areas. The Heart Centre has a cool "bubble wall" and an asteroid that holds special secrets. The treatment rooms in the cancer wards, my friends have told me, are amazing. But the Inflammatory Bowel Disease treatment rooms are greatly in need of an upgrade. I'm thankful that there are people out there, complete strangers, who take the time to see what Jacob's Healing Rooms is all about and support my wish to make sick children smile.

Most of all, I'm thankful for the support. Friends, family, strangers who have become friends, your support means the world to me. My journey with this disease has been far from easy. I've had so many disappointments and "hiccups" come along. At times I've wondered how I'd find the strength to keep going on. Then I read the messages of support and love. The kind words that people have taken the time to share which I save to read on the bad days, they mean so very much. Reading your words, sharing your stories of living with challenges, they help to bring brightness to my darkest days. I wish you all could know just how much your kindness has helped me. I'm forever thankful.

Saturday, October 10, 2015

Jacob's Song Pick of the Day (10/10/2015): "Rule the World" by Walk Off The Earth

Saturdays should be about fun, so today I'm choosing to bring a song that's fun, meaning, and inspiring; "Rule the World" by Walk Off the Earth. Have a listen and read why I chose this song today:

"I materialize the feeling/To carry on, to carry on/I know some will say I'm dreaming/But I carry on, I carry on". 

It's hard to be an 11 year old fundraising to make a major change to benefit other sick kids. I don't have near the powerful voice of an adult to be able to make people sit up and take notice. I'm afraid that people might say "what does he know, he's 11" or suggest that people my age really don't make a difference in this world. I might be young but I still have the power to rule this world. Any business leader knows about the laws of "supply" and "demand", and that you must get people interested in order to create a demand for your supply. And who best to approach about changes that you want to make other than those who are going to be using your services. In my case, that would be us kids. We are the ones who have to sit in an empty and dull environment as we're receiving our IV outpatient treatments. We're the ones who know what might benefit someone our own age as they're going through this journey of disease treatment.

Treatment rooms have been some of the longest days of my life at the hospital. Most of the time, I'd arrive at 8am and I'd be *lucky* if I were out of there by supper. The yellowy-orange color of the walls, while bright at first, seems to put a harsh glow on the room after awhile. The tvs hanging from the ceiling are the only source of entertainment in the treatment room itself, and most of the time the parents hijack the tv to watch the news. What child wants to watch news for 8 hours?! The playrooms down the hall offer a lot of great things for the little kids, but not much for us tweens. And we can't always go to the playroom as we have to be carefully monitored when getting treatment.

Here's where I'm going to make my difference. I'm going to supply the hospital with uplifting child-friendly environments to help them meet their demands on the services. I'm going to make treatment day a better experience, one that hopefully other kids don't have to dread going to. I am only 11, but there's nothing saying that 11 year olds can't achieve amazing things. But I can only do that with your help. Please support Jacob's Healing Rooms and help make my dreams of helping other kids come true.


Friday, October 9, 2015

Jacob's Song of the Day (10/09/2015): "Keep Your Head Up" by Andy Grammer

Today's song is about having the courage to see the bigger picture. I picked "Keep Your Head Up" by Andy Grammer. Have a listen and read why I chose this song today:

Life is a journey. When I try to think back to the life before I got sick, it seems like such a distant memory. It's almost like life began when I got sick. Which isn't far from the truth. When I think about getting my diagnosis of Inflammatory Bowel Disease, I can see how my life changed almost instantly. I was suddenly thrown into this world of medical "stuff", into a world of constant needles and IV lines. A world where you wear your medical tubes and scars as trophies showing what you've overcome. I had so many questions in those early days of being diagnosed. I thought that I'd just take some treatments and that would be that. How wrong I was.

Here I am 12 trips to the Operating Room later, and one colon less. I've been booked again into the OR 2 weeks from today to see if my fancy designer drug that costs a tiny fortune is working, and if there's any new areas of damage. I think most people would be really worried, but I'm not really feeling like that. It all has to go back to the idea of control. I can't control what the doctors are going to find when they go in there, but I can control (or at least try) how I let the worries effect me. If I focus on the things within my control, at least I can still be working on moving forward. If I let the worries take over, then I'm stuck. And I don't want to be stuck any more. It's time to keep my head up and keep on going.

Something that has been helping me keep my mind off of everything is working on Jacob's Healing Rooms, my wish to help other sick kids. It's a good feeling that it gives me to be able to take my experience and use it for good. It's a positive outlet that I can pour all of my heart into making it a reality. As I start to get ready for my next procedure, I'm focusing on the bigger picture; how I can help make a difference. Please help support my wish to help other kids needing outpatient IV treatments, donate and share my message today. Together we can make a difference in the lives of people who could really use a boost.


Thursday, October 8, 2015

Jacob's Song of the Day (10/08/2015): "Hold Your Head Up" by Macklemore

Today's song pick is about finding peace in this life you have been given and the path that you are on. It's about acceptance of the reality of every day. Today's song pick is "Hold Your Head Up" by Macklemore (feat. Xperience). Have a listen and read why I chose this song:

"A friend of mine once told me,/We have many paths in this journey./They act in different directions/So when you question don't be worried,/It's not a wrong one-/Beauty can be found in all of them."  Those are some powerful lyrics! And share a very important message: Even if your path is difficult, beauty can still be found in it. I have to admit, in my moments of weakness I do question "Why me?", "Why must I have so many challenges handed out to me?" At 11, I've had 12 sedated procedures, including the removal of my heavily damaged colon. I've lived through intense pain of developing bleeding psoriasis covering over 70% of my body. I have to live with medical appliances attached to me. I think it's pretty easy to see why I would question "why me?".

But then I get to thinking, why not me? Why not let it be me who makes the doctors think outside the box? Perhaps the stuff they find outside that box will go on to help other kids who might be similar to my circumstances. Why not let it be me who tries out newer medications? Why not let it be me who sets out to inspire others to find the beauty in their life? All of this suffering that I've gone through, all the pain and tears, they must mean something. I believe in each of us having a purpose here on Earth. We're born to leave our mark on the world, to do just one little thing that can help make a huge difference. I think it would be such a waste if we weren't here for a purpose. I strongly feel that my purpose here is to take the challenges I face with my health and find the beauty in them. I am here to inspire and to help make a difference in the lives of other sick kids. But beyond just raising funds to change the hospital treatment rooms, I'm hoping to spread kindness and inspire others to do their own acts of giving. If we all gave just a little, our world would be even more amazing!


Wednesday, October 7, 2015

Jacob's Song of the Day (10/07/2015): "The Sun" by Maroon 5

Today's song is inspired by friendship; "The Sun" by Maroon 5. Have a listen and read why I chose this song today:

Man, I really wish I had gone to this concert when Maroon 5 was in Toronto earlier this year. It would have been awesome I'm sure. Anyway, today's song as I mentioned is inspired by friendship. I miss my friends. Today was supposed to be my first day back to school in almost a year (my last full day was Halloween last year). Instead of catching up with my friends, I'm home fighting a nasty bug that I picked up. I just want to go back to school. It's been a year of not seeing my friends for longer than a few minutes at a time. And it's hard. It takes a toll on me. I need my friends to help me escape all the "other stuff" that goes on with being so sick all the time. My friends are like fireflies, they help to give me a little spark of light, which gives me a tiny bit of energy to have the strength to get through the tough days. I need my friends so that I can be a kid again. So that I can be reminded that there is life outside of a hospital or medical office.

I was recently asked by a twitter follower about advice I would give on how someone could be an #IBDFriend. An #IBDFriend is someone who supports us (people living with Inflammatory Bowel Disease/Crohn's/Ulcerative Colitis), who listens to our "war stories" and is just there as that helping hand we may need to get out of a hole. It's someone who understands that we are trying our best and that sometimes even trying our best is a challenge. They don't get upset if we cancel plans at the last minute or can't do certain activities with them. An #IBDFriend offers kindness and reminds us that we need to hold on to hope when we feel that our hope is being shattered.

I'm trying to be an IBDFriend to other kids living with Inflammatory Bowel Disease. Jacob's Healing Rooms is my offer of kindness and friendship to kids who are going through outpatient IV treatments for IBD. Having a supportive healing environment to receive treatment in will help to bring hope for brighter days to us sick kids. Please help me make my wish of creating Jacob's Healing Rooms come true.


Tuesday, October 6, 2015

Jacob's Song of the Day (10/06/2015): "If Today Was Your Last Day" by Nickelback

Today's song pick was chosen for it's message of living in the moment, rather than being stuck in the past or focused on tomorrow. I chose "If Today Was Your Last Day" by Nickelback to remind us all that we don't know how long we have here, so today is your chance to make a positive change. Have a listen and read what this song means to me:

I am very aware of death. I've had times where I've worried that I might not have a tomorrow. I know that the heart condition that the doctors believe I have (more testing coming) often leads to a sudden cardiac arrest. I know that sometimes people die from Crohn's Disease (I won't be one of them), and that people with Crohn's Disease who experience lengthy flare-ups are at a higher risk of certain cancers. And I've met other kids at the hospital who have since gone on to another place. I'm mostly stable with my heart symptoms right now, so I have no plans of going anywhere. But the thought does creep up from time to time.

This is part of what motivated me to start fundraising for Jacob's Healing Rooms. If I were to pass away, I want to be able to think that my life mattered. That I made a difference. I want people to remember that all it took was a simple wish to improve the lives of other sick kids and hopefully this will inspire others to make their own simple wishes. I also want to be able to inspire other kids out there by letting them know that they have the power to make a difference as well. All it takes is a dream and determination.

*To make a donation to JACOB'S HEALING ROOMS click HERE*

Monday, October 5, 2015

Jacob's Song of the Day (10/05/2015): "The Remedy" by Jason Mraz

Ever have one of those days where you wake up just knowing that it's going to be a bit rougher than the day before? It's one of those days. So, today my song pick is "The Remedy" by Jason Mraz. Have a listen and read why I chose this song today:

Jason Mraz has some great inspirational songs out there, I'm also a big fan of "I Won't Give Up". If you've never listened to his music before, head over to YouTube and listen to a few clips, it's well worth it!

"Who says that you deserve this? / And what kind of god would serve this? / We will cure this dirty old disease".

There's a lot going on in my life right now. And that still doesn't even cover the half of it. I'm waiting for surgery #13, waiting to see about what funky thing my heart is doing, waiting to see if my treatments for the Crohn's Disease are working, and above all else, waiting to feel better. I'm tired of waiting. I'm sick of sick. Maybe that's why I'm sick. This cold/flu bug is really digging in hard, and without an immune system, it's going to be a knock-down drag-em out fight I'm sure. 

But even with all of this going on, I'm still trying to keep my mind off of it all. I'm trying to stay positive and concentrate on the bigger picture - being able to go back to school this week for the first time in a year. I'm worried that I might not even make it to my first day if my fever doesn't go away soon. Imagine that, missing a year of school and then on what's supposed to be your first day back, you can't even go. I just want to be able to see people again! 

Nobody deserves a chronic illness. It's just something that happens to come along and completely change our lives. There's a lot of great research into Inflammatory Bowel Disease (IBD) that is going on. They're looking at the role of gut bacterias in the development of IBD, various genes that may play a role, and coming up with new ways of targeting specific factors in IBD. I always hold on to the hope that one day maybe there will be a cure, or at least a treatment that keeps it in remission. That's why I donated my colon to research, so that it might help to discover a cure or better treatments. 

I might not be able to personally offer a cure to help others with the disease, but I can do something to help make it easier for kids needing treatment. Jacob's Healing Rooms is something positive that I can do with the cards that I have been dealt in this life. It's my way of making the best out of a really "dirty old disease". I want to help kids remain hopeful, and feel encouraged along their healing journey. In order to do this, I need your help. Please support and donate to Jacob's Healing Rooms to make my wish to help other sick kids come true. 

*To make a donation to JACOB'S HEALING ROOMS click HERE*

Sunday, October 4, 2015

Jacob's Song of the Day (10/04/2015): "I Don't Feel Like Dancin'" by Scissor Sisters

Today's song of the day is meant to show how I'm physically feeling today, "I Don't Feel Like Dancin'" by Scissor Sisters. Have a listen and read why I picked this song today:

I'm worried. I've caught a bug/virus out there and now... I'm sick. I certainly don't feel like dancin', I feel like I'd love to sleep though. Why does a simple little bug worry me? Because bugs to me are anything but simple.

Two years ago I caught a "simple" bug. Deja vu, it was right around this time of the year. I was immuno-suppressed at the time, meaning I don't have much of an immune system to fight off the basic bugs, and I still don't. I went to doctor after doctor when week after week I couldn't stop coughing and I was having troubles breathing. I would turn purple during coughing spasms and I thought for sure I had broken all my ribs. The doctors threw the kitchen sink at it - antibiotics, puffers, more steroids. Nothing would work. I went from October until April that year coughing every few minutes throughout the day and night. Finally, something happened on Good Friday. Leave it to holidays for the interesting things.

I had been released from the hospital the day before, after being admitted to get an NG Feeding Tube for my Crohn's (my first time with one). I wasn't feeling good even before being released. They did xrays, discovered I had pneumonia in both lungs, but they decided I had been stable enough to go home. I made it through the night, although I don't remember much. I know that my mom was pretty freaked out when I started turning grey, and I got freaked out when I threw up my NG and a bit of blood. By the time we got to the hospital, my oxygen levels were at 72% and my heart rate was over 200 beats a minute. I was really, really sick. I spent the next month in the hospital hooked to IVs, and the coughing didn't fully stop until July. That's one huge cold!

Now here I am with an NG again, and I'm starting to have flu symptoms. I'm still immuno-supressed. Thankfully, I've had my pneumonia vaccine but I'm still scared that now I'm going to miss even more school since I'm supposed to finally start again this week! More than that, I'm scared of a repeat of 2 years ago.

Could a simple flu shot have prevented this from happening 2 years ago? I had my flu shot, but if other people had had their's? My doctors have said that it's important for anyone in contact me for any length of time to have a flu shot. And trust me, it doesn't hurt. But it might save the life of someone you love.

Saturday, October 3, 2015

Today's Song of the Day (10/03/2015): "We Are Stars" by Virginia to Vegas, feat. Alyssa Reid

Today's song of the day of the day comes from Virginia to Vegas, a band that recently made it even bigger with their hit "We are Stars" featuring Alyssa Reid. I had the amazing opportunity to see Alyssa live in concert. In fact, she was the first opening act that I had seen in concert and I learned that an opening act can be just as good as the headliner. Have a listen and read why "We Are Stars" is my song pick today:

"It's hard to see the light when you're caught up in your life/You're scared and insecure cause now it's fight or flight/Can't think of giving up/You don't know how much you're loved". We are all stars waiting to shine inside.

Today is World Ostomy Day. Never heard of something called an ostomy? Don't worry, you're not alone. I hadn't heard about an ostomy until one day the doctors marched in and said that this was what was going to save my life. Let's go back a bit so I can explain. When I was diagnosed with Inflammatory Bowel Disease in 2012, I was rated on the severe end of the scale. My entire colon was completely swollen, constantly bleeding, and not absorbing or breaking down food the way it should. We tried everything to make it calm down a bit, but no amount of pills or IV meds were helping. The doctors were very worried as we tried to stop the inflammation that my colon would perforate (explode). My colon had to come out (and I made the decision to donate it to science to find a cure).
I was terrified of the surgery at first. I was worried that people would know, of how it would look and feel, and what it would mean for my future. I was terrified that I'd start to leak in a very public place and be teased by others for it. There were a lot of negatives I could think of, but not that many positives.

I had my surgery February 2013, they took out my colon and made an ileostomy. This is a surgery where the very end of the small intestine, called the terminal ileum, is "re-routed" to a surgical opening in my skin and then sewn there to hold it in place. The result is called a stoma. A colostomy kit (a big bandaid type thing with a bag attached) then goes around my stoma to collect my waste.

There's such a fear out there when it comes to ostomies. Most people think that it's older people who end up having an ostomy, but I've met a lot of kids like me who need one to treat IBD, or to treat colon cancer, or other diseases of the intestines. It doesn't make US different, it just means that we poop (or pee) a bit differently than others.

Looking back, I wish I could tell my old self that it would all work out, that it wasn't as bad as people think. An ostomy saved my life. I have been able to talk to other kids waiting for their surgery and share my experience with them. To tell them that I used to worry about what other people would think if they knew. To say that if you're bullied because you have a stoma, it just shows people's lack of education about it all. To say that most of your ostomy nightmares won't come true. I want people to know that living with an ostomy changes you, but it can be a positive change. Don't let other people tell you otherwise.

Friday, October 2, 2015

Today's Song Pick of the Day (10/02/2015): "The Big Bang Theory Theme" by Barenaked Ladies

Today's song of the day was chosen to show off another side of me, my love of all things science. I picked "The Big Bang Theory Theme" by Barenaked Ladies. Have a listen and read why I chose this song today:

Today's song is honor of NASA's announcement earlier this week of flowing water on Mars. It's an interesting discovery as without an atmosphere on Mars, scientists didn't think that it would be possible to have liquid water. Anybody who knows me, knows that I LOVE science. I'm a self-proclaimed science nerd, learning about anything from string theory and Hawking Radiation to targeted antibody therapies. I'd love to become a scientist who studies AstroBioChem Physics. Is there even a program to study for that? I'll create one. I also love the Big Bang show for all of the science related jokes. It's awesome. My Christmas Elf on the Shelf even brought me my own Sheldon Bobblehead for Christmas!

Science is everything and to everything is science. Without science and technology, advances towards finding cures for diseases just won't be possible. Without science and technology, new medications to improve our quality of life won't be developed. Without science and technology, I wouldn't have to worry about the disease killing me, I'd already be dead from boredom. Let me explain a bit about that. There are plenty of outdoor activities I like - camping, hiking, geocaching (treasure hunting), tobogganing and swimming but I spend more time in waiting rooms or as a patient in the hospital than I do doing these activities. When I go for an admission, there are a "few" basics that come with me - my 500 capacity DVD binder (pretty much full), my Nintendo 3DS, my touchscreen laptop and my IPod. Of course, that's when I'm admitted. For day trips, normally I would just bring my 3DS. I even take my frustrations out by playing Super Smash Bros. Technology keeps me from getting bored, it's a great distraction during the hours spent waiting for something to happen.

That's why one of the first changes I want to make for Jacob's Healing Rooms is to put in tablets at each treatment chair. This gift of technology will allow other kids receiving IV treatments to escape, to connect with others, to have a source of finding information, and to be entertained. Maybe for a few minutes they might even feel like a "normal" kid again.

*Please support JACOB'S HEALING ROOMS. To make a donation click HERE*