Wednesday, September 30, 2015

Jacob's Song of the Day (9/30/2015): "How do you want to be Remembered" by Magic!

Today's song of the day is one that I chose as a reminder to why I'm fundraising to help other sick kids, because I want to be remembered as someone who did good in this world. Today's song pick is "How Do You Want To Be Remembered" by Magic! Have a listen and read why I chose this song today:

How do you want to be remembered? What will you be remembered most for after your time here is up? Do you have a "bucket-list" of things that you'd like to do before your time is up? Last week while at Sick Kids Hospital, I got the chance to take pictures of one of the things I want to be remembered for:

This is a picture of one of the outpatient treatment rooms at Sick Kids. As you can see, while there is plenty of light coming into the room, it's not a very appealing child-friendly environment. The tvs hanging from the ceiling are one of the few options for distraction but with the remotes chained to the bottom of the tv set, it's beyond the control of most of the children that would be there. There is a play room down the hall, but we can't always go there and if no volunteer is present, the materials are kept in locked cabinets. When I would come here for my iron infusions through the IV, I would be here for half a day and couldn't wait to get out of the room again. For my Remicade IV infusions, I'd be there for 8 hours at a time and be completely bored out of my mind. It's not the most relaxing of environments. 

I want to be remembered as the kid who changed this so that he could bring smiles to other kid's faces. The plan so far includes installing tablets beside each treatment chair for patient use. These will be loaded with games for all age groups, as well as include internet access. I'm going to put a bubble tube sensory unit in each room for visual distraction, as well as a fresh coat of paint on the walls. I'd like to put Sky Panels over the lights so that each light will look like clouds floating. These changes would go a long way to helping lift the spirits of the hundreds of kids that pass through the doors here each year. Physical healing can be helped by supporting patients emotionally and mentally through the treatment process. I have no doubt that these changes would benefit the hospital greatly. 

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

Tuesday, September 29, 2015

Today's Song Pick of the Day (9/29/2015): "When Can I See You Again?" by Owl City

Today's song pick is something cute and fun in honor of my friends, I miss you! Today's pick is "When Can I See You Again?" by Owl City. Have a listen and read why I picked this song today:

Cute, right? I miss my friends. My last full day of school was Halloween last year, since then all my schoolwork has been sent to me in a binder to figure out on my own (good thing I'm gifted!) and all my social life has been whatever e-mails happen to get sent my way, or with the other kids at the hospital. I've missed a lot of school, a lot of class trips and a lot of time to make friendships. In grade 4, I missed 74 days of school, when I was just starting off at a brand new school. Then in grade 5, I missed 76 days. Last year, I might have had 15 days that I made it for. I also missed the weekend class field trip. I haven't gone to school (for class time) yet this year. The school is making up a "health safety plan" so that they know how to help me should something go wrong. In the meantime, it's me and my binder.

Yesterday I went and did something that I haven't had done since Grade 3, I showed up for class pictures. It was overwhelming to see all my friends for the first time in forever. It was really great though to know that they haven't forgotten about me. In fact, my wonderful classmates are planning to do a school-wide fundraiser to help Jacob's Healing Rooms. They even brought in my news interview on Jacob's Healing Rooms and put it up in the class and school. I was really nervous about how I would fit back in since I've missed so much. Now, I'm really looking forward to getting back, so all I ask is:

"When can I see you again?"

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

Monday, September 28, 2015

Today's Song of the Day (9/28/2015): "Give a Little Bit" by Supertramp/Roger Hodgson

Today's song choice is a bit out of what I normally listen to, but has a great message of spreading love and kindness, "Give a Little Bit" by Supertramp/Roger Hodgson. Have a listen and read why I chose this song today:

Isn't that a great song to inspire you to help others? What is the one thing that you would change in the world, big or small? What would you give to change it? Sometimes even the smallest of changes can have a huge impact, especially when they are added together to make an even larger impact. Every seed has the potential to blossom into a beautiful flower with the right ingredients. Roger has it right on, the main ingredient for any change is LOVE! Sometimes we lose sight of this idea. We hear so many negative stories in the media, it seems that the world is becoming a very rough and mean place. But we all have the ability to love, and love has the power to change the world. So get out there and share your love with the world!

"I'll give a little bit/I'll give a little bit of my life for you/So give a little bit/Give a little bit of your time to me". I've been asked about ways that someone could help make my wish of Jacob's Healing Rooms to help other sick kids come true. There are a few different ways you could help out.

  1. Donate! We have an online donation site set up HERE. So far we have raised $4400 and counting, but we need your help to meet our goal! This same link can be found off to the right of the blog posts. 
  2. Follow Jacob's story here on the blog, and over on Facebook HERE. Feel free to share the posts with your friends, as the more people we reach the better chance of success.
  3. Follow Jacob on Twitter: @KidWithCrohns and Retweet his tweets. 
And a huge thank you to everyone for continuing to support me and my dream of Jacob's Healing Rooms. Together, we will share love with the world. 

Sunday, September 27, 2015

Jacob's Song Pick of the Day (9/27/2015): "Once A Day" by Michael Franti & Spearhead

Today I chose another song that is both fun and meaningful, I really hope you enjoy it as much as I do. Today's pick is "Once A Day" by Michael Franti & Spearhead. Have a listen and read why I chose this song today:

Michael Franti is an amazing person, someone that really inspires me to do good in this world. Michael's son was diagnosed with a kidney disease which has led to some of the creation of some of the songs that he performs. Michael does a great job at raising awareness of kidney disease, and has created the "Do It For The Love Foundation" which aims to bring the gift of live music to individuals who are critically ill and veterans. Michael fully understands the impact that music can have on a person's outlook on life and wants to be able to share that gift with others. His music is a great call to action, reminding us that we all have the power to make a difference in the world. I know that Michael certainly makes a difference.

"You got your friends, you got your money,/Got your family, got your honey,/You think you got a million days./But then life comes along/And it knocks you right down to the ground". I never thought that I would all of a sudden become so very sick. One night I went to bed feeling ok and then when I woke up, literally everything in my life changed. Instead of soccer games, hanging out with friends and swinging out of trees, I'm sitting in waiting rooms and waiting for people to tell me what the next plan is to deal with it all. I'm going to sleep each night hoping that when I wake things will be different, only to wake to a continuation of the day before. You might think that you have everything you ever wanted, only to realize that life has other intentions and you have to change your entire way of thinking. Always remember that life can change so quickly and at any time so you need to take the moment that you are living and do something that's on your wish list.

My wish is simple, to make sick children smile. To offer kindness, compassion and to make a difference in this world of ours. At the end of the day, I want to be able to say that I lived well, and that to me means helping make this world a better place. Please help support Jacob's Healing Rooms, together we can make a difference.

"Everybody oughta hug somebody, at least once a day./And everybody oughta kiss somebody, at least once a day./Everybody's gonna miss somebody, at least once a day./And everybody gotta love somebody, every day!"

Saturday, September 26, 2015

Todays' Song Pick of the Day (9/26/15): "I Don't Wanna Be Sad" by Simple Plan

Today I bring you a song that I'm pretty sure was written exactly about me and for me, "I Don't Wanna Be Sad" by Simple Plan. Have a listen to this absolutely amazing song and read why I chose it for today's song of the day:

"And I know/Some days will be bad/But I don't wanna be/Sad Sad Sad/No more". I don't want to be sad. It's not who I am. If I let the repeated surgeries, failed treatments, disastrous side effects, months-long hospitalizations get me down, I might not ever get up again. It's been a very difficult week of medical appointments for me. I feel like I'm moving nowhere with getting better, or at least even feeling a bit better, and it feels like those that are supposed to be helping me get back on my feet, are giving up on me instead. I know I'm complicated and that I don't fit into the normal of anything. It's frustrating when all the pills and various therapies that are thrown at me don't work, I get that it forces my helpers to think outside the box. I'm not asking for miracles, I know that Crohn's Disease is forever. I know that I'll live with an ostomy forever. I'm ok with both of those facts. I just want help to feel better and be able to do the things that I love.

"I swear all the tears I've cried/Could fill an ocean". I've shed a lot of tears this week, but today is about letting that go and moving on. I'm going to choose to put a smile on my face, to laugh and say "I Don't Wanna Be Sad". And I certainly don't want other kids to feel sad, so that's why I'm going to take my sadness, my frustration, my worries and I'm going to turn it around to give something beautiful to others to help share a smile. Because when other people are happy, it makes me smile. Please help me fulfill my wish of making Jacob's Healing Rooms become a reality!

Friday, September 25, 2015

Jacob's Song of the Day (9/25/2015): "Ho Hey" by The Lumineers

Today's Song of the Day pick is another song that is representing how I feel at this particular moment, "Ho Hey" by The Lumineers. Have a listen and read why this is my song choice today:

"I don't know where I belong/I don't know where I went wrong".  Sometimes you try so hard to do everything right, to make everyone around you happy that you completely lose focus on yourself. Then, when those that we have tried so hard to work with disappoint us so deeply, it leaves us second-guessing everything. I've been in this situation more than I like to admit. I've felt completely disrespected by those that are supposed to be there, those that are supposed to help. I've felt ashamed to be who I am. I've felt like I'm the problem and that it must have been something that I did that has angered people. I'm 11, and I'm pretty sure that I'm not supposed to feel these things. But I do.

What I wish that people knew was that I'm trying my best. I may be a kid, but I'm still a human being who has feelings. When I don't fit into a neat little box, it's because I'm unique, and that's a good thing. I wish that all people were taught the values of empathy, compassion and respect. These all seem to be the basics that would make our world a better place. I wish to be able to have my voice heard, my concerns addressed. I need to know that I belong.

So what do you do when you feel such great disappointment, when you feel like those people who are most needed are not in your corner? What do you do when you're left with the feeling of "what was the point of that"? You pick up the shattered pieces and make something new from them. You throw yourself even more into taking the pain and using it as your inspiration to do even more good in the world. You shed your tears, have a (indoor) group screaming session, and say "ok, where do we go from here". I still feel physically horrible, but I'm not going to let the emotional impact of the past stop me from doing good. They say that "Giving Feels Good". It's one of the honest truths out there. The devastation I felt of yesterdays will only reinforce my commitment to help other children. There has to be something good that comes from all of this. Please support Jacob's Healing Rooms and help make the days of sick children a bit brighter.

"Love - we need it now/Let's hope for some"

Thursday, September 24, 2015

Jacob's Song of the Day (9/24/2015): "Immortals" by FallOutBoy

Today's Song Pick of the Day is inspired in part by superheroes and comes from another of my favorite bands that I've been lucky enough to see in concert: "Immortals" by Fall Out Boy. Have a listen and read why this is my song pick of the day:

Do you have a favorite song or band that is your "go-to" when you need a lift? Fall Out Boy is one of my "go-tos" when I'm needing to get pumped about something. I first came across this song in the movie Big-Hero6.

For those who haven't seen the movie, it's awesome - it features something I'd love to do as a self-professed science nerd, go robot battling. Anyway, BeyMax, the robot, is a personal health checker. Kind of like a bodyguard that looks after your emotional side too. The story is about love and sacrifice.

This song to me is about how each one of us has the power to be superhero. They come in all shapes and sizes and may or may not be wearing a cape. I've had people call me a hero. The Usher of the Black Rod for the Senate in Canada even wrote me an e-mail saying that I was his personal hero. I don't understand it. I don't feel as though I've done something exceptional or extraordinary. I'm just being true to myself, true to who I am. I get speechless when someone tells me how brave I am or inspiring to others. These are things that I strive to become. We all have superhero powers inside of us, it just takes something to bring them out.

Immortals. Even if we don't live forever, wouldn't it be nice if there were at least a trace of us left? Something to say that we were here and did something with our existence? I might not want to live forever, but I know that I do want to be remembered. If I can help even one person in the future, my life and everything that has happened will mean something. And that is why Jacob's Healing Rooms is so close to my heart. I want all the kids that pass through the treatment doors to be able to feel like they have the chance to be a superhero as well.

"Sometimes the only pay-off for having any faith/Is when it's tested again and again everyday"

Wednesday, September 23, 2015

Jacob's Song Pick of the Day (9/23/2015): "Calling All Angels" by Train

Today's Song of the Day is meant to represent how I'm feeling, "Calling All Angels" by Train. Have a listen and read why this is my song pick of the day:

"I want a reason for the way things have to be/I need a hand to build up some kind of hope inside of me".

I went to the Train concert in Toronto. I never got the chance to see them. Instead, here is a snapshot of the moment everything changed:

This is me backstage in the medical services room at the concert. Hey, it's not all bad, I can say that I made it backstage at least! Too bad that I didn't get a chance to see the concert though, I "heard" it was a great one! This was the moment that would throw everything about my health off. I had collapsed in my seat at the concert from a hypertensive crisis (where your blood pressure gets abnormally high with no apparent reason). They ended up finding a heart problem, but we're still waiting to see an electrophysiologist after having seen a cardiologist.

So yesterday, my mom had my pre-op phone appointment with the surgical nurse to talk about my next set of scopes. As if either my mom or I need to be told what a scope is after 11 times through the procedure! Of course, we had to mention the heart problems but the cardiologist had cleared me for surgery. The nurse called back shortly after she had gone to check with the doctor to let us know that they felt they couldn't safely proceed at this time, until I've seen the electrophysiologist. In December.

To say I'm upset is a mild understatement. I've been having a lot more Crohn's type of symptoms lately that leads me to believe that I might be going into a flare, or already in flare mode. The only way to tell for sure is to see the results of the endoscopy and colonoscopy, as the inflammation markers in the bloodwork don't always paint an accurate picture of the insides. I've just started this new medication, Stelara, in May and we are all anxious to see if it's helping and if not to change up the treatment plan. The doctors were waiting on the scopes to make a final decision about my GTube (feeding tube implant). I'm scared. I'm worried that it's going to be the spring before I get help. I know that the meeting with the electrophysiologist is only the beginning of the journey for the heart issues and that I'll likely need more testing. Which means an even longer delay before I have more procedures. Then I'll have to wait weeks after I'm cleared by the heart guys in order to have my procedures scheduled. I feel awful now. I want to be able to get better now. Somedays you just need a hand to lead you back to hope.

What makes me feel better when I hit a moment like this? (Which seems to come along way too often) Throwing myself even more into helping others. Renewing my determination to help other kids with this disease so that they too can look forward to brighter days ahead. Please help make my day brighter, support my wish of making #JacobsHealingRooms a reality. Together we can help bring happiness and spread kindness.

"I won't give up if you don't give up"

Tuesday, September 22, 2015

Jacob's Song Pick of the Day (9/22/2015): "Shake It Off" by Taylor Swift

Today's song pick of the day is "Shake It Off" by Taylor Swift! I would have given anything to be able to go see Taylor in concert, but it's my sister's birthday the weekend that she's performing and my mom couldn't get three tickets. Hopefully she'll have more tour dates in the future! Have a listen and read why I chose this song today:

"But I keep cruising/Can't stop, won't stop moving/It's like I've got this music/In my mind/Saying it's gonna be alright"

A direct quote from me: "'Cause sometimes you just have to shake it off, yo". Nothing is more true of that than having a chronic disease and being a target for bullies. There's a lot more that goes with a chronic disease like Crohn's than just the disease itself. When I'm hospitalized, which happens more than I'd like to admit, bloodwork often shows up at 6;30-7;00am. There's nothing like having that as a wake-up call. Then there are times that you're told that you can't eat. I spent from February of this year until June without being allowed to eat solid foods. Do you have any idea how many food references there are out there? I do. A lot. Then there's the disease itself and the complications from it, the side effects from the treatments, the symptoms that can stop you from doing even simple things. It's a lot to deal with. But sometimes you just have to "Shake it Off". I can't control my disease, but I can control how I let it get to me. If I start the day upset with being woken up by bloodwork, and don't shake it off, it would make for a very long day. If I'm angry at all the disease has taken from me, and don't accept my new limitations, it's only going to make coping with my disease daily that much harder.

I've wrote before about being a "victim" of bullying. I can't tell you enough how much it hurts. When I started my Crohn's journey, I was tiny. Within a few months on the steroids, I pretty much almost tripled my weight. It was hard enough physically to deal with these extreme changes, but the reaction from others really hurt.  It felt like other kids were trying to tell me that it was wrong to be me, that there was something that made me not lovable. I began to dread seeing some of these faces when I went to school. People think that looking physically different makes you different. It doesn't. It makes me human. If we were all the same, what a boring world that world be. With my NG Feeding tube (naso-gastric tube) coming out of my nose and attached to my face, I get a lot of stares. People move away from me. I hear other kids whisper and see them point. These actions also hurt. My message I'd like to share is that you're perfect just the way you are. Bullies seek power. Don't let them have the power over you by believing in their words. By being who you are and staying true to that, you're just like being a superhero.

Jacob's Healing Rooms will help other kids to shake off their problems and let them be a kid again while receiving medical treatments. Please help support my wish of making Jacob's Healing Rooms a place that all kids can be encouraged to be who they are and be proud of how far they have come along on their journey.

Monday, September 21, 2015

Jacob's Song Pick of the Day (9/21/2015): "Firework" by Katy Perry

Today's Song of the Day is one that's both fun and meaningful, "Firework" by Katy Perry. Have a listen and read why I picked this song today:

What a great anthem, right? "'Cause baby you're a firework/Come on, show 'em what you're worth". A firework starts off simple enough, looking really just like a long filled tube wrapped in fancy paper. It's only when it's given a spark of flame that it starts to heat up and take off. At the moment it explodes, we see the beauty that was hidden inside. We all have these little "tubes" within us. Little tubes that if given a bit of a spark and some attention can turn into something much bigger. Each one of us is capable of becoming a firework, we just need that starting spark.

"Maybe the reason why all the doors are closed/So you could open one that leads you to the perfect road/Like a lightning bolt, your heart will glow/And when it's time you'll know". My disease has been like the Tazmanian Devil, a tornado of challenges that's kind of wild and unpredictable. I was diagnosed with Crohn's in July 2012. By October we were already talking about losing my colon and they were preparing me for having an ostomy. I was so not ready for this conversation. It seemed I had just been diagnosed, how could my options already be exhausted?! I was 8 years old and really scared. I didn't know what life would be like with an ostomy, and worried about how it would interfere in everything. At first, I didn't even want to talk about it. But then I kept getting sicker and sicker. It got to the point where I started to think about what a positive difference this might make. It might mean the end of spending my life in hospital, it might allow me to become somewhat of a kid again. By December, I had come up with a plan and was finally ready to talk about having a colectomy and living with an ostomy.

My plan was pretty simple: I was going to lose my colon. No doubt about that fact. I thought about how many other kids were going to get diagnosed with IBD, and how my struggles could just as easily be mirrored in their journey. I didn't want anyone else to go through what I went through. So, without discussing it with my mom first, I turned to the doctor and asked:

"If I'm going to lose my colon, that's ok. But it's only ok if I can donate it to research in hopes that we can find a cure. Can you make this happen?" I made a few people have some tears with my wish. But I thought about what a waste it would be just to throw the organ away when it could come to do some good. I think that every door closed in my case because I was meant to do something good. There's a reason why I'm here and I have a purpose in this life: to help others. My heart certainly glows when I think of the impact that I'm going to have for so many other kids who will follow in my footsteps. I hope that I can inspire those that need to have an ostomy, or those that are going through so many treatments to avoid surgery, that life does go on.

For those who are going to be having surgery, or have already had surgery, the experience for me hasn't been nearly as bad as I feared. Yes, I've had some complications like medical tape issues, but I can tell you that my life has improved greatly since having it done. Before surgery, it seemed that I was at the hospital weekly when not admitted because I was having such a bad time with getting the disease under control. I was missing out on a lot of activities with my friends, and missing a lot of school. The ostomy allowed me to get a bit of a life back again. It's gotten to the point where most days I don't even think about the fact that I poop differently. You do adjust. This does become your "normal". Hang in there.

Sunday, September 20, 2015

Jacob's Song Pick of the Day (9/20/2015): "Everybody Hurts" by R.E.M.

My song pick of the day today is one that's very meaningful to anyone who is struggling and serves as a reminder to everyone that we all need to help each other; "Everybody Hurts" by R.E.M. Have a listen and read why I picked this as my song of the day:

"If you think you've had too much/Of this life, well hang on/Everybody Hurts/Take comfort in your friends"

Today I did something that I have done every year for the past 4 years, I ran in the Terry Fox Run.

Well, I ran a few feet every now and then, needing to use my wheelchair to get through the whole walk. The Terry Fox Run is very special to me. My Papa is a stage 4 bladder cancer survivor and I've lost quite a few friends that I have made along my journey to this disease. Having severe Crohn's Disease, I'm also more likely to develop stomach/intestinal cancer. I was thinking while I was out on the trails about how Terry was so sick, literally dying, yet his determination kept driving him forward through the pain. I was thinking about my old cub leader who fought bravely, trying to help out as much as possible with Scouting while undergoing treatments. I was thinking of all of the kids I see when I'm at Sick Kids Hospital who have IV poles requiring two or three pumps for all of the medicine that they need. I was thinking about what a great gift it was just to be able to be out on the trails. Terry's vision of a cancer-free world and his efforts to make it happen inspires me greatly. He took such an ugly disease as cancer and managed to make something beautiful from it. He managed to inspire a whole country, and still inspires so many more. I want to be like this. I hope that one day I can be even a bit of the hero that Terry Fox is. I want to be able to inspire others, to tell them to "hold on", that there is always hope, that life does go on despite the hurts. Our world would be an even more awesome place with more people like Terry. All it takes is kindness.

Jacob's Healing Rooms is going to help kids receiving IV medical treatments as an out-patient. For Inflammatory Bowel Disease (IBD), by the time a kid gets to the point of needing an IV treatment like Remicade, they've often gone through, and failed, a handful of other treatments. Often, Remicade might be our last medication prior to undergoing surgery like a resection or a colectomy (removal of the colon). Us kids have a lot on our minds when we get to that point, so do our parents. Jacob's Healing Rooms will take away some of this stress and provide a great distraction from the medical world. Because let's face it, we all want to escape the medical world sometimes! Please help me make Jacob's Healing Rooms become more than a dream of mine. Together we can make a difference.

Saturday, September 19, 2015

Jacob's Song Pick of the Day (9/19/2015): "Bad Day" by Daniel Powter

Today's song of the day is especially appropriate for how I feel, "Bad Day" by Daniel Powter. Have a listen and read why I chose this song today:

"Cause you had a bad day/You're taken one down/You sing a sad song just to turn it around"

Everybody has bad days. What are your bad days like? What helps you get through? Does it help you to know that even on what you would call your "worst" days, there are always people out there who have it just a bit worse off than you? It's all about perspective.

As an outsider looking in, you might say my life kind of sucks. I drew the short straw in this game of life. That it's unfair (and you'd be right, no child should ever be sick), that you feel sorry/bad for me, etc. I don't feel that way. At least most of the time I don't. Let me start by explaining what one of my bad days might look like.

My bad day story: I have difficulty sleeping, by 5am I drag myself and my IV pole out to the living room. I have so much nausea that I just want to stick my head in a bucket and hold my conversations from there for the rest of the day. I've already been to the bathroom 3-4 times and I have to go yet again, the effort it takes to get there is exhausting. I'm so dizzy that my IV pole seems to be the only thing holding me down from spinning off this earth. I can feel my heart racing and I want to just pass out. When I go to empty the contents of my ostomy bag, I end up getting covered in poop (happens more than I care to admit). I rest most of the day, feeling like this and then I decide to do something "normal", I go to a concert. As I'm sitting there in between bands, I'm feeling worse and worse but my mom bought these tickets for a band I really wanted to see and I'd feel like I'll disappoint her if we leave. All of a sudden the dizziness goes from a level 10 to a level 20. My vision and my hearing have gone "dull". My mom tells me that she was asking me things but I wasn't responding. She said that it was at this point that I started slumping forward. She all but carries me to the medical team at the concert venue. I throw up. The EMS on site is very worried about me. I get shipped to the hospital and learn the terms "hypertensive crisis" and LongQT Syndrome.  That was a bad day, after all, I missed the concert!  What made it worse was this was the second concert I missed out on, the first being a few weeks before at the Ed Sheeran concert.

Despite days like this, including how I'm feeling today, I still don't think my like kind of sucks. I've met a lot of wonderful people along this journey. Complete strangers who have reached out to me with kind words of encouragement which has come to mean so much. I've learned a lot of valuable lessons. I've learned about determination. You need to have determination just to make it through each day, but more than that, you need it to "live well". I've learned about courage. It takes guts to talk about your guts, your poop, your ostomy. It takes strength to make it through 11 scopes in 3 years and 1 major surgery. The thing I learned most though is compassion. It takes compassion in order to make this world a better place. It takes compassion to be able to help others in a deep and meaningful way. It takes compassion to build a better world. These are wonderful gifts that this disease has given to me and which has inspired me to want to help other kids to make their "bad days" a bit brighter.

Friday, September 18, 2015

Jacob's Song Pick of the Day (9/18/2015): "Nintendo" by Todd Carey

Not all great songs have deep lyrics to them. Sometimes a great song is just one that makes you want to tap your toes and dance in your seat or to get up and dance like no one's watching. Today's song pick is one of those songs, "Nintendo" by Todd Carey. Have a listen and see why I picked this as my song of the day:

It's a catchy little song, don't you think? I've been singing or humming it quite a bit. This song makes me feel like a kid again. You're asking how I can "feel like a kid again" when I am still just a kid. Well, I've missed a large chunk of my childhood spending most of the last 3 years in hospital. I've learned things that kids shouldn't have to know, but do because it's a part of the reality. I've learned about some cool things, like what the lab does with your blood sample, how DNA can be extracted from a strawberry, and how a pill-cam works (you swallow a blinking "pill" and it continually shoots images for up to 8 or so hours and then comes out still blinking). I've also learned some pretty uncool things like TPN (total parenteral nutrition delivered through IV) will blow the smaller veins quickly, that medications can have horrible side effects, and that being hospitalized on holidays is the worst. I guess you could say that this song just lets me clear my head of all of this and escape for a few minutes at least. 

Talking about escape, have you heard how gaming (like on Nintendo systems) can help kids? There was a great article written in MacLean's Magazine on the healing power of games. Check it out here. Games can help us in so many different ways. One of my favorite games is Minecraft. I can completely get absorbed for hours playing this simple game of building that can become as complicated as you want it to be. I've been known to build some outhouses and blow them up with some good ol' TNT. My way of taking pleasure of blowing up my poopy disease. Minecraft is one of the few things that I have left in common with the rest of the kids. When I am feeling frustrated with my disease and all that goes with it, I play some Super Smash Bros on the WiiU and imagine my character fighting back to overcome the challenges in my way. 

Jacob's Healing Rooms will make gaming one of the tools used to help distract kids from their disease and treatment. Each child passing through the doors will have a tablet available to allow them to play their favorite app, or to connect with other children in the hospital or in children's hospitals across Canada using the UPopulis program (a social media type program for hospitalized and outpatient children). This is just one of the important upgrades that I want to make so that other children have a supportive environment that encourages healing. Please help make my wish come true. 

Thursday, September 17, 2015

Jacob's Song Pick of the Day (9/17/2015): "When the Day Comes" by Nico & Vinz

Today's song pick of the day is "When the Day Comes" by Nico & Vinz. I love this band and listen to their CD "Black Star Elephant" quite a lot. They are also absolutely amazing in concert, I'm looking forward to them coming back to Toronto again. Have a listen and read what this song means to me:

"I'm ready for war/I'm ready for action, now watch me kick in the door/But what if the day comes when we go from sun to monsoon/Who can I run to, run to, run to". 

This song to me is a call to action. Every one of us has something that we're fighting for, a dream that could make this world better.  The idea of being remembered as someone who has done good in this world is what keeps the "fire in my soul" burning. I've been feeling awful lately. The one positive thing that keeps me focused and determined is my dream of helping other sick children. Working on Jacob's Healing Rooms has helped me feel better physically and has brought my spirits up. I'm ready for action, ready to make this a huge success that will bring people smiles for years to come. I'm ready to make something beautiful. Will you help me?

Wednesday, September 16, 2015

Jacob's Song of the Day: "My Wish" by Rascal Flatts

Today's song pick of the day carries a very meaningful message, "My Wish" by Rascal Flatts. Have a listen and read below why this is my song of the day:

"My wish for you/Is that this life becomes all that you want it to/You're dreams stay big and your worries stay small/You never need to carry more than you can hold". Everybody has dreams and wishes, it's what inspires our actions. There is no bigger dream to me than being able to say "I helped make a difference". Our lives are short, a point that I was reminded of when I started having heart problems. Focusing on what is within our control and trying to live in the moment, has become that much more real to me. The cold hearted truth is, no one knows when the end is going to come. If we wait until tomorrow to fulfill our dreams,we may never see them come to life. If we wait until tomorrow to do our part to do something positive, we may have missed our chance to change the world. Yes, I'm still only an 11 year old child and it's harder to get my voice heard but I can still make a difference. 

"I hope you always forgive and you never regret/And you help somebody every chance you get". Words to live by. My great-grandfather taught me a lot about giving. He would do anything, for anyone, at any time. He was the type of person who would give away the shirt on his back if he hadn't already given it away. I miss him a lot but I know that he'd be looking down smiling at my determination to give back to the world. See, he knew that even though I might be young that I could still help others. I can still use my voice to talk about my experiences and the need for more research; I can still host fundraisers and walk in my "Cause" walks like the Gutsy Walk; I can still make the world around me a better place just by showing kindness and compassion. Giving makes me feel like I have a purpose, an importance of some kind and that I am needed. Don't we all want to feel this way? 

Tuesday, September 15, 2015

Jacob's Song Of The Day (9/15/2015): "Boulevard of Broken Dreams" by Green Day

Today's song of the day is "Boulevard of Broken Dreams" by Green Day. Have a listen and read why I chose this particular song today:

"I walk a lonely road/The only one that I have ever known/Don't know where it goes/But it's home to me and I walk alone". Inflammatory Bowel Disease (IBD) is a lonely disease. Nobody talks about it. It's not right to discuss what takes place in the bathroom or the stuff that our body does. But if we don't talk about it, how can we raise awareness? How can we push pharmaceutical companies for better treatments? How do we urge researchers to find a cure for this disease? Let's face it, the main symptom of IBD involves the gastro-intestinal tract and it isn't pretty. When I was first diagnosed with this disease back in July 2012, I was VERY sick. I was so sick that the doctors were concerned that I might perforate my colon. We tried everything. At one point I was taking;

a strong dose of prednisone - a steroid.
Remicade - a biological medication used for a variety of autoimmune diseases like Crohn's
Methotrexate - a chemotherapy agent to suppress immune system function
Mesalamine - another medication for inflammatory disorders
Lansoprazole - to help fight against acid production
Zofran - for vomiting
the antibiotics Flagyl and Vancomycin - they work on the gut microbiota and prevent/treat infections

Not that great of a breakfast. It was lonely when treatment after treatment would not help to get me to remission. I saw other kids coming in to hospital after me, getting better and leaving before me. You can easily wonder whether you're ever going to be well enough to go again.

I've pretty much exhausted my treatment options which is an extremely lonely place to be in. The biologics Remicade and Humira are two of the most often used medications when all of the earlier medications have failed. I've tried Remicade twice. The first time, I developed antibodies but the treatment wasn't working anyway. Then I lost my colon. The second time, I developed severe psoriasis that was painful and bleeding to the touch and covered 70-75% of my body. Humira covered my body in bruises to the point where my mom tells me that I looked like I got hit by a car and then run over by a bus. Now I'm on this medication Stelara, another form of a biologic which works on a different receptor in the body from the other biologics. It's been great for my skin, and for awhile we thought it was working for my Crohn's as well (research has been somewhat good on the use of Stelara for Crohn's), but for the past several weeks I've noticed more symptoms coming up again. I will be scheduled for another colonoscopy and endoscopy soon where we will look at how much it has or hasn't helped. If I am deemed to have "failed" this treatment... there's not too much left out there available to me. In fact, the only thing left might be applying to the government for special access to a medication called Entyvio which is being used with some success in the US. The medication is available to adults in Canada just not pediatrics.

Jacob's Healing Rooms is a place for kids to feel less alone, less "down", while they are receiving their IV treatments. It's a place of hope, encouragement and dreams. It's a place of love. Please support Jacob's Healing Rooms and help brighten the lives of other sick children.

Monday, September 14, 2015

Jacob's Song of the Day: "I Bet My Life" by Imagine Dragons

Today's song pick of the day is from one of my favorite bands, Imagine Dragons. I saw them perform this summer, and it was hands-down an amazing concert. I look forward to being able to go see them again one day. Anyway, I picked the song "I Bet My Life", have a listen and read why I chose this one today:

Fighting Crohn's Disease, I often feel like I let people around me down. I've spent family holidays, like Easter, Mother's Day, Family Day, and Christmas either in bed or in the hospital. In fact, rather than opening up Christmas Day presents this year, I asked to go back to bed:

"I Bet My Life", to me, is about overcoming your past; taking whatever is holding you back and letting go of it so that it doesn't continue to stop you from being the best "you" possible. I am LIVING with Crohn's Disease. Each day, I try to accept that this is my "normal" and find new ways to connect with the world. I am still me.

It's hard to make plans when you might have to cancel at the last minute, or worse, you go and have to leave early. For group work at school, I never know if I'm going to be there to see the project through so it's very hard to commit to a role within the group. In Scouting, right now I can't physically do most of the activities that are planned so I worry that I'm going to disappoint the group if they count on me for something. It's not that I don't want to go out and do things, to be a "normal" kid, but these days I just don't have the energy to be able to do that. I want so badly for those days to return. To have a physically "I feel good today" day. I'll admit, it's been awhile since those words came out of my mouth. I don't want to disappoint people. I want people to know that they can count on me to do whatever it is I can do in that moment.

Jacob's Healing Rooms is more than just a nice place to receive various IV therapies. It's a place of hope. Hope to be able to put the past behind us; hope that one day we can overcome this disease; hope that we don't have to feel like we have disappointed anyone because of our health. Please help me make these treatment rooms become inspiring places of hope and healing.

Sunday, September 13, 2015

Jacob's Song of the Day (9/13/2015): "The Lazy Song" by Bruno Mars

Today I bring out one of my favorite artists, Bruno Mars as my song pick of the day. I've had the amazing opportunity to see Bruno last summer while I was receiving TPN (nutrition through the vein) at the hospital. If you ever get a chance to see Bruno live, you won't be disappointed! Best.Concert.Ever! There's so many awesome Bruno songs to choose from, but today in particular is: "The Lazy Song". Have a listen and read why I chose this one today:

The video just makes me smile when I'm feeling like I am. For the past several weeks my energy levels have been kaput, likely related to the fact that I haven't been eating that much because of my extreme nausea. It's a vicious circle; I eat, I feel even sicker and then comes the lack of energy to do the most basic things. At 11, I should be out running around with my friends. I should be able to go hiking without feeling like I need a portable cot to go with me. I shouldn't have to worry about being sick at the most awkward of times. But I do.

And I'm not alone. Inflammatory Bowel Disease can cause nutritional deficiencies, which in turn can cause the heavy, almost painful at times, fatigue. It can cause the muscle weakness, the lack of feeling like you want to do anything other than get up off that couch. When you add in the fatigue and nausea that the various treatments cause, it makes the disease that much more complicated to live with.

I can't change the disease or the effects of treatment, but I can help to provide a distraction from all the negative that goes with it. Jacob's Healing Rooms will have the ability to distract kids from the worries over the symptoms and treatments. Having access to games, social networks, internet, visual distractions from sensory bubble tubes and a fresh, appealing environment will go a long way to helping to make this a child-friendly place of healing and hope. Please help me make my wish come true.

As an interesting side note, I'm hoping to be able to apply for my Starlight Wish soon and my #1 wish to chill out with Bruno Mars at Disney. I definitely need to get feeling better to get this to happen!

Saturday, September 12, 2015

Jacob's Song of the Day: "Try" by Colbie Caillat

Today's song is one that has particular importance to me and speaks about what I've experienced so far in my short life, Colbie Caillat's "Try". Have a listen and read what it means to me below:

I've experienced what unfortunately a lot of kids have to go through these days: Bullying. Between my grade 3 and grade 4 years is when I was diagnosed with Crohn's Disease. Like many other people living with Inflammatory Bowel Disease, I had to take A LOT of prednisone. I quickly went from being a little 40lb kid where you could see all the bones in my body, to being closer to 100lbs. 

Crohn's Disease had also likely made me shorter than the rest of the kids. I was not your typical model-body type, that's for sure! I can laugh about it now, but it was hard at the time. The kids didn't understand that it was completely out of my control. At the time, I was also growing my hair long to make a wig for kids with cancer. My grandpa had been diagnosed with stage 4 bladder cancer, and it was a pretty scary time for us all. I wanted to give back to honor my grandpa by growing my hair for others. The kids called me "fat lady" and would make comments all the time about my appearance. It hurt. A LOT. But I never let it stop me from being determined to go through with my plans. It wasn't them that I was doing this for, it was all for the other people who could use it. 

I'm different. No matter what I do, I'll never quite be the same as everyone else. How could I be expected to? Not only are my experiences completely different than everyone else my age, but I also have a permanent ostomy (unless a sudden cure for Crohn's is found!), and I have a tube that hangs out of my nose for my nutrition. I've gotten used to the stares that I get when I'm out in the community. My mom and I explain to others who ask about it, what it is and what it does. Does it feel weird to have people stare? Yes. But then I remember that people are staring because unless you've spent time at the hospital or have a close family member/friend with a tube, they've never likely seen it before. I'll be starting school again shortly I hope, and I know that in grade 7 there is a lot of pressure to fit in. I'm worried, but it's not up to me to change. It's up to everyone else to accept me for who I am. I don't have to try, I am who I am and that's who I'll be forever. 

"You don't have to try so hard/You don't have to give it all away/You just have to get up, get up, get up/You don't have to change a single thing"

Friday, September 11, 2015

Jacob's Song of the Day (9/11/2015): "Conqueror" by Estelle

Today's motivating and inspirational song is "Conqueror" by Estelle. Have a listen:

Estelle's voice is beautiful, isn't it? But that's not the only reason why this song is my song pick today. It's easy when you are chronically sick to have a lot of negative thoughts come along. The worries over when the "better days" that were promised will come along, or about treatments failing, or about whether there will ever be a cure, can create so much fear. Even for us kids. "Conqueror" for me is about facing these demons head on. To not listen to those who tell me what/who I should be. It's about living my life to the fullest and achieving my dreams. "I'd rather stand tall than live on my knees/'Cause I am a Conqueror and I won't accept defeat!" This should be everyone's mantra for life.

There's no bigger dream of mine than to be remembered for having made a difference in the world, and to have been able to help others. Jacob's Healing Rooms will help kids to face their fears and encourage other kids to reach their dreams. It's only with your help that Jacob's Healing Rooms can become more than a wish of mine. Please help it come true!

Thursday, September 10, 2015

Jacob's Song Pick of the Day: "Anything" by Hedley

Music has the ability to touch our souls and heal us from the inside-out. No matter how bad I'm feeling, songs have the power to uplift the spirits and it also helps to be able to escape into a funky beat once in a while. On that note, I'm going to try to share some of my Song Picks of the Day with you all.

Today's Pick: A band that I've had the pleasure of seeing twice and would hands-down go to another of their fun-filled concerts - Hedley! Stay tuned below where I explain my song choice:

Let's admit it, I've had a pretty rough last 3 years with 11 sets of scopes and biopsies, and 1 major surgery. I've been stuck to an IV pole more often than I've been outside. When I do go out, people stare at me because I have a tube hanging out of my nose. I'm different. People make assumptions about me, about what I can and can't do. Hedley's "Anything" reminds me that anything is possible when you follow your dreams. I can become a scientist and I definitely want to be an astronaut in space! I try not to let those that tell me differently bother me, I have enough to worry about without them bringing me down.

Jacob's Healing Rooms will remind kids that even though they may be different they too can achieve their dreams. Help make this possible by supporting Jacob's Healing Rooms.

Wednesday, September 9, 2015

The Heart Speaks

It was a BIG day today. The day we've all been waiting so (sometimes) patiently for; the meeting with the cardiologist. Recap: Jacob's had a history of tachycardia (fast heart rate) and has become increasingly dizzy, having heart palpitations and feeling faint. He had a hypertensive episode in June, which revealed that he was having prolonged QT waves of his heart, which isn't good. We've been waiting to find out answers since then, and everything else to do with his health has been pending this appointment.

Jacob and I both LOVED this doctor. Amazingly patient with us as we told our long and complicated story, she took the time to answer our questions and was completely willing to accommodate what we were asking of her, which seemed like a lot! After listening to our medical events, looking at his old ECGs and Echocardiograms she isn't sure what to really make of it without further testing. He has had a few abnormal ECGs in the past, but he's also had a couple of normal ones. So unfortunately, it's not a clear cut definitive case of Long QT Syndrome. She noted that he's on a couple of the meds that can prolong QT, but she is hesitant to change them based upon their value to Jacob's functioning. She is questioning whether some of the symptoms and heart changes can be associated with electrolyte imbalances and low potassium. Given that Jacob still has a very limited number of calories going into him daily, we're waiting on the GI doctor to fix this issue, Jacob might be on the malnourished side, especially if his Crohns is not under control. Given the amount of fluid loss for Jacob daily, he's going to need to be connected constantly to his feeding tube when not at school to replace his fluids. From this you can see how connected everything is, and how quickly treatment becomes so complex in a situation like this. For Crohns patients with an ostomy, it's so difficult to stay hydrated, especially if you have issues with overheating and sweating. Then because of that, the rest of the body starts to have complications pop up.

The BEST news of the day? She is going to call the electrophysiologist at Sick Kids to see if we can be seen any sooner!

Jacob's health has been on a steady decline over the past few weeks. Hopefully now that he has been cleared by cardio for surgery, we can start moving forward in attempts to get the Crohns under better control. He's really struggling with a lot more nausea, vomiting and acid reflux, but the fatigue is just weighing him right down.

Jacob is hoping that he'll be able to start school next week. He's really looking forward to being around other kids his age again. He was ready to go this week, but the school needs to put a medical safety plan in place before he can attend and wanted to have a letter from the cardiologist to declare him well enough to attend. Thankfully the cardiologist agreed to do this for us :)

Jacob also hopes to be able to get the strength and energy to record his next YouTube vlog soon, and get back to working on his dream of Jacob's Healing Rooms.  Thanks everyone for supporting us through all this, and please continue to share Jacob's wish to help other sick children; Jacob's Healing Rooms.