Thursday, December 31, 2015

Jacob's Song of the Day (12/31/2015): "Great Big Storm" by Nate Ruess

I've been saving today's song for quite some time, and I can't think of a better time now to use it than for New Year's Eve. Today I picked a song that as soon as I heard it, I thought "Did he write that for me/about me?", it's just fits so perfectly. Today's song is "Great Big Storm" by Nate Ruess. Have a listen and read why I chose this song today:


I think this might be one of those songs that really got overlooked by many of the local radio stations, at least the ones I listen to. If you've never heard it before, did you like it as much as I did when I first heard it?

The part that really gets me is the chorus:

"Because we're holding our own in a great big storm / And though we're cutting it close / We won't let go / Oh no I can't believe / Everything falling down around me / But now we're holding our own / And won't let go"

That pretty much sums up 2015 for me, it's been a great big storm. Actually, the last 3 years have been, but this year especially. This year has seen me struggling with daily intense nausea and vomiting, going 4 months without solid food (exclusive tube feedings), starting on my last pharmaceutical option (at the moment) for helping to resolve the inflammation, developing severe and painful psoriasis, having a hypertensive crisis episode at a rock concert, and having an allergic reaction to the materials of my permanent feeding tube causing slight bleeding in my stomach. Yep, it's been a year. One long of a soap opera year. 

But through it on I've held on. I don't know how. I don't know how I keep going when everything around me crumbles to pieces, but I find a way. Isn't that what life is about? Finding a way to face your challenges without being destroyed/dominated by them? 

Two days ago I was rushed into the ER. I had been having a lot of chest pain/tightness, shortness of breath, sweating, dizziness, blurred vision and could feel my heart literally "jump" sideways and start to pound. I went to stand up and almost fell. I could feel myself shaking. I had my loop heart monitor on at the time, but the machine wouldn't let me send it through to the hospital for the cardiologist to read. By the time I got to the hospital, the episode was over except for the extreme exhaustion that follows one of these episodes. And they've been happening more frequently. While my QT rate of my heartbeat was borderline long, they weren't able to find anything that explains why I keep coming so close to collapsing again and again. It's really frustrating, as I'm sure it is for the countless doctors who I keep repeating the same symptoms to. It makes me doubt myself and question whether I should listen to my body. 

But I'm still holding on tight during this nightmare roller coaster. 

2016 oddly enough gives me hope. It's a fresh start, a time to take the lessons learned from the past year and move forward. I've made it through 2015 and maybe like a caterpillar I might be coming out of my chrysalis to spread my new beautiful wings. Because magical transformations can happen like that. 

Happy New Year Everyone! I hope that you find a way to hold your own in great big storms as well. 

Wednesday, December 30, 2015

With a Little Help From My Friends

Friendship. I have the most amazing friends who go way above and beyond with their kindness and generosity. My classmates for example have become such huge supporters, something that I didn't think would ever happen with my history of being bullied at school. I used to dread going to school each and every day, even though I love learning. Now I just can't wait to get back to school.

My classmates have been following my journey on my blog since I haven't been to school to tell anyone what's been going on. I love being able to share what my experience of being a child with an incurable illness is like. I think that it helps both of us; my classmates learn about the challenges people with disabilities face and I get encouragement from them to continue my long fight.

One of my school friends, Sadie, asked if she could do a special fundraiser this Christmas for Jacob's Healing Rooms. Sadie is a very talented, kind-hearted, 12 year old who I'm lucky enough to call a friend. Sadie decided to put her amazing artistic talents to work to create absolutely stunning Christmas cards that she put a lot of time and effort into making. And then something else great happened.

Sadie's Star
Sadie's Snowman

Sadie's Heart (My Favourite)



Two of Sadie's friends, Nicholas and James, decided that they would also like to help Sadie raise money for Jacob's Healing Rooms. This is such an awesome example of how one kind act can lead to another. Sadie, Nicholas and James are perfect examples of what I hope to do with Jacob's Healing Rooms on a larger scale - to inspire others to do their own acts of kindness. I'd love to create a giant "snowball of kindness".

Together, Sadie, James and Nicholas raised $320!! I want to say a giant thank you to them and everyone who purchased cards from them. This type of generosity is what is making Jacob's Healing Rooms such a success. Never stop with that giving spirit guys, kindness conquers all!

Monday, December 28, 2015

New Year's Resolutions

I've been thinking a lot about resolutions. Most people's resolutions come from a place of regrets; not having done something, having done too much of something, etc. When we think about resolutions we tend to think about the things about our own selves that we don't like. Most of the time our wishes are about going along with what society says we "should" be. Like being thinner, looking different - things that would make us fit in with the crowd. We don't tend to see the bigger picture.

This year, 2015, has been one of the worst and best of my life so far. I didn't know it was possible to experience so many things at either end of the goodness spectrum, but here we are, and that's what's happened. In the past year I have been wheeled into the OR about 5 times, spent over a month as an inpatient twice, had at least one day a week at the hospital when not an inpatient, and have met so many different doctors that I need a scorecard to tell me who belongs to what speciality. I've also moved on to one of the last treatment options for my Crohn's. To say that my overall health hasn't improved is an understatement. There's so much that I want to change about that! 

Life is short. I've almost died. A few times now. I had my first epileptic seizure at the age of 3 and went unresponsive in my mom's arms for several hours. I had such severe pneumonia that I have turned grey, unable to speak, and had my heart rate over 200. I collapsed at the Train concert and had an "Exciting" lights and sirens ride from the concert hall to the hospital because of my heart. I've been reminded strongly this year that we need to live. We don't know how long we have here, so we need to look at each day as a very real and true gift. 

But 2015 hasn't been all lights and sirens emergencies. Some really great, awesome, amazing things have happened. I got Jacob's Healing Rooms up and going, and we're SO close to reaching the 25% mark of my overall goal. I thought that I was doing Jacob's Healing Rooms to help other kids who are sick like me. But I've learned that I also get something out of it. I've been inspired by the generosity of so many strangers, friends and family who have helped my wish take flight. I've received so many messages sharing kind words of encouragement that help me more than I can be able to tell you. While I might not be feeling physically better, it gives me an extra boost when I see just how far my messages of hope and courage are going. I want to be remembered when I am no longer here. I want other people to have a lasting inspiration that leads them to do their own acts of kindness. Any act of kindness, no matter how small can make a huge difference. Just like the little pebble that creates a large ripple. When you have a dream nothing is impossible. I've also made some incredible new friends who have made a lasting impression.

So resolutions heading into 2016? Well, I can tell you that it's not about me. It's about raising awareness for Inflammatory Bowel Diseases. It's about inspiring others to make a positive change. It's about pushing for better treatments. It's about helping others to hold on to hope, love, and belief even when it seems impossible.

My resolution for 2016 is to give more. What will your resolution be?

Thursday, December 24, 2015

The 3 Ingredients to Life: Hope, Love & Believe

There are three extra-special Christmas ornaments that hang on our tree, Believe, Hope and Love:







Believe. I believe. We all need something to believe in, it's what keeps pushing us to go forward even when we'd rather hide our heads in the sand. It's what helps us from moment to moment, reminding us that even though things might seem dark right now, there's a belief that not all days are going to be like that. I believe that there is something that we can learn from all of our experiences here on Earth, good or bad. It would be such a waste if nothing of value came out of everything I've been through in the past 3.5years. I believe in the power that we all have to make a difference in this world and that when we all work together, nothing is out of reach or impossible. Together I believe that we can bring smiles to the lives of other sick kids. 

This year was tough for believing. As each day passes and I physically feel the same or worse, that belief that things are going to get better seems further and further away. At times, it felt like saying that things were going to improve was about as improbable as pigs flying out of my butt. But belief is one of those human things that we need. If I didn't cling to belief even in my darkest times, then there wouldn't be any hope. If I didn't hold on to belief, then it would be really hard to see a point to all the suffering and want to do something to change it. I wouldn't believe that a 12 year old could make the type of impact on the world that I want to make. 

Love. Love is essential to life. Love creates, inspires, comforts and encourages. It's what overpowers the sadness and let's us know that we're not alone. Love has the power to heal the pain, disappointment and fear. It holds our hands when we are scared, and helps us to believe when we're at at our most full of doubts. Love is something that you can never have too little of. 

This year I have been shown so much love. Jacob's Healing Rooms has brought some new and amazing people into my life, who have shown me such amazing love and support that I could never possibly tell them how much they mean to me. Having spent so much time at the hospital and being sick, it can be very lonely at times. The love that others have shown has made me speechless, brought me to happy tears and been overwhelming at times. It's only with love that all of your dreams become possible, and all of you are showing me exactly what the power of love can do. Thank you from the bottom of my heart. 

Hope. Hope is the most powerful ingredient yet. It's what keeps us looking into the future and knowing that there is a light at the end of the tunnel. It's what we cling to when everything around us seems to be crumbling away. If there were no hope for change, hope for tomorrow and hope for better days, the world would be a very depressing place. Hope is one of the most important values that we can hold on to desperately and whisper our deepest, most secret wishes. Hope is an amazing power. 

It could be so easy to lose my hope. When each treatment option has brought some significant side effects, reactions or just plain didn't work, it's hard to hold on to hope that there's going to be a treatment that does work. It's hard to hold on to the hope that there will be better days ahead when I've felt pretty much the same day-after-day for months, and months before that, and months before that... It's hard to cling on to hope when you have no more treatment options available. But it's necessary. I need to have hope for better days. Without hope there would only be despair, and I won't ever get anything done since there wouldn't be motivation to make positive changes. Without hope, the world turns black and all the colour gets sucked away from life. Hope needs to stay strong, it needs to help us get through each difficult moment so that we can feel that there are chances for a better life out there. Hope. What a wonderful word. 

Being the math geek that I am, I couldn't help but make a special equation for my ornaments: 


To have hope, you need to add belief in the possibilities that are out there with a good helping of the love that encourages you to continue on each day. 

This holiday season, remember to hold on to your hope by sharing belief and love with the world! 

Happy Holidays Everyone!

Wednesday, December 23, 2015

My Letter to Santa - 2015

Dear Santa,

It's me again, your pal Jacob. It's really been quite the year, eh? I'm really struggling with writing a letter to you because I just don't know what to say. Sure I could list off some toys and gadgets, but I don't need any of them or even really, really want to have them. The things I really want can't be made in your toyshop, or in any factory in the world.

Santa, I really want a cure for all of these incurable illnesses. I'm living the best I can with my severe refractory Crohn's Disease and the complications that have come from it. I've seen so many other kids at Sick Kids who also struggle with their illnesses. I want to be able to be a kid again. I want to do what my friends are doing. I want to be able to walk more than 2 minutes without feeling like my heart is going to explode and all of the oxygen has been sucked out of the world. No kid should feel so bad that they just want to go back to bed Christmas morning instead of opening up gifts. Yet, there are a lot of kids like me, who feel that just being able to be out of bed is an awesome Christmas gift. I want for all children who celebrate a holiday at this time of year to be able to enjoy their celebrations without worrying about the medical stuff.

Santa, I've been looking at the news and haven't liked what I have seen. There's too much negativity and hatred in the world. I don't understand how people can be so mean to one another. We only have this life, this moment in time, and to waste it by not spreading kindness is saddening. I want the people in this world to offer one another a hand-up, to try to change the world by doing something kind. It's stories like these that can over-power all that is negative. It's stories like these that give us hope.

Santa, for Christmas I just want the gift of being remembered as the kid who tried to make a difference and inspire others to make their own difference in this world.

I'm sorry that I don't have anything to ask for that is easy to make. The best gift I can think of is the gift of being able to make other sick kids smile.

Thanks Santa.
With love,
Jacob

Tuesday, December 22, 2015

My Best Birthday Gift

Last week was such a busy week for me with all of the medical appointments that I'm just getting caught up on all of the wonderful birthday messages and love that was shown to me that day! It meant so much to have people all over the world show such thoughtfulness. I'd like to share one special act of kindness that was presented to me on my birthday weekend.

My Papa used to work at The Oshawa Curling Club and made many friendships with people there over the years. When my story made the newspaper, a few of the members of the club had seen it, and reached out to find out how they could help make my wish come true. A few members decided to take it upon themselves to bring attention to Jacob's Healing Rooms. My newspaper story was posted in a few areas of the club, and a big collection jar was placed at the bar. It was such an amazingly nice thing for them to do!

I haven't been able to have a birthday party in 3 years. My grade 5 birthday I had pneumonia and could barely blow out candles let alone host a party. My grade 6 birthday was when the nausea and vomiting started to be a huge problem. This birthday I was recovering from surgery #14 to place a GTube feeding tube, which we have learned I am allergic to and it will need to be replaced on January 7. It was a bummer that I couldn't have an actual birthday party yet again, but I decided to do something awesome with it and see if I could host "Jacob's Online Birthday Bonanza to Benefit Sick Kids". Why not turn a bad situation into something a bit better?

Hearing that it was my birthday, they decided it was the perfect time to give me their awesome present. Together, the Oshawa Curling Club members raised an amazing $711!! My birthday wish goal amount was to see Jacob's Healing Rooms reach $8000, and thanks to the outstanding generosity of the members, I was able to reach my goal, which was the best birthday present I could have asked for!

Thank you for everything that you all have done. This dream of mine can only come true with the kindness and generosity of others. I know that together we will be able to bring some smiles to these kids faces and make treatment days brighter! I can't wait until I can come and thank you all in person next month!

Saturday, December 19, 2015

I've Got a Heart!

Thursday was the day we have been waiting for since June. It felt like a day that would never get here. In June, I went to the Train concert and collapsed with a hypertensive crisis episode in my seat. I had two ECGs done after my dramatic exit from the concert in the back of an ambulance. Lights, Sirens, Action! They had sent me home from the ER but called my mom two days later to say that there was a problem with the electrical activity of my heart. The doctor had seen a prolonged QT interval that could potentially lead to a sudden cardiac rest. Now that's dramatic.

The electrophysiologist recalculated my QT wave rates and noted that it's borderline. He sent me for a cardiac stress test to see what was going on and to see if we could find what's causing the extreme heart rates.

I think it's safe to say that we can add the cardiac stress test to one of my least favourite procedures list. My heart rate seemed to do some funky things. Resting it was on average about 150 beats a minute. But then when I quickly stood up, it shot down to only 88 beats a minute before climbing back to 140. And then I started walking. I didn't want to complain, I wanted to complete the test no matter what. As the treadmill started, so did the chest pain. My heart rate hit a sustained 210 beats a minute. By the end of the test, the only way I was leaving the room was in a wheelchair. The technician felt that they were able to accurately capture what was going on and that they had enough information to say what was wrong. However the doctor wants me hooked up to a telephone ecg monitor for the next month. Great! More wires! So we're still left with very few answers why I'm constantly dizzy and feeling like I'm going to pass out, and why my heart jumps and feels like it's shaking sideways at times. Hopefully we'll find out more next month!!

"What's Eating Jacob?" - the saga continues!

Can I get the last week of my life back? Please? What a week it has been! And I've had many other things that I could have been doing rather than sitting in different waiting rooms. Like Christmas shopping. Oh, wait a second, I wouldn't have been doing that anyway with the way I'm feeling. I'd become part of the display shelves in no time at all and "crash, bang, boom" it wouldn't be pretty.

Tuesday was the day I had been waiting over 3 weeks for , or basically since they inserted the GTube (gastric feeding tube). Nothing has been right since that day. A recap of events: Surgery #14 was to insert the feeding tube since I'm not able to eat a whole lot of "real food". Two days after the insertion I got a wide-spread rash across my belly. They did skin biopsies (I don't even have to tell you how not fun it is to have someone stick a needle over 9 times into your nerve-sensitive belly), and the biopsies came back normal for the chicken pox/shingles they thought it might be. I came home from the hospital. Then we discovered that wherever the tube was touching my skin was blistering so bad that you could see an indent in my skin where the tube had "eaten" a trough. Kinda cool, since it started to form a sun ray pattern around the GTube hole, but very painful. Then the hole itself started to get extremely sore, so much that it hurts to stand-up with the weight of the tube pulling on it. This hole then started to look infected, but it was quite clear by this point that I was reacting to the tube materials (the blistering to the skin stopped when I put a layer a skin protector down below the tube). So the GTube team thought it best to come in and see whatever doctors needed to be seen to solve the problem.

Tuesday couldn't have come fast enough. The constant itch, the pain, the nerve sensitivity. It's making me tempted just to rip the tube out myself. The wonderful GTube nurse checked me out and agreed that it sounded like an allergy to the tube materials, as did the general pediatrician she called up to take a look. GI and radiology agreed that it was likely a tube allergy and that I was probably reacting inside the stomach and tube tract as well, which was causing the pain. But they didn't want to give me anything for the pain because it "could cause you to develop toxic megacolon". Ummm, did someone forget to read my chart for the part that says "subtotal colectomy"? I can't get toxic megacolon without having a colon! But whatever, I'll deal with the pain, just get the tube out of me. Radiology agreed that if no one had any ideas to fix the tube area, that they would switch it out next week for me since they can't do a replacement any earlier than 4 weeks because they could "damage the tract". Then along came someone who didn't completely agree with the assessment which changed the whole plan. Dermatology initially said that it looked like a tube allergy rather than just a skin infection, skin breakdown. They said that we should likely do some skin rubbings to see what materials he is reactive to before we go ahead and put in a new tube. Then they ended the conversation with "but we don't think it's an allergy". That completely left us in limbo land, a place I don't like to be. General pediatrics has sent me home with Atarax (a heart-safe anti-histamine) which has really helped bring down the swelling. They also sent me home with a warning that if, as they suspect, my stomach is reactive to the tube, we might see sudden bleeding and to get our butts back to the hospital if it happens. Great, love warnings like that. So, the next important GTube date will be January 7th. We'll be switching my tube into a Mic-key button which sits right flush with my skin (think about a beach-ball opening to put air into - same idea). I really hope I'm not allergic to this one!

But more than being allergic to the new one, it's disappointing that I'm still in a lot of pain. It's disappointing that I'm looking at the Christmas Holidays approaching and I'm begging time to stop because I'm just not up to celebrating. I have a feeling that this is going to be a "deja vu" Christmas where I spend the day exactly where I spent it last year:



It's going to be Deja Vu alright!



Monday, December 14, 2015

Welcome to Jacob's Online Birthday Bonanza to Benefit Sick Kids!

Welcome to Jacob's Online Birthday Bonanza!

My Birthday Pi Pie (It has a Pi symbol on it)

So, what's this all about you ask? Well, I'm an 11 year old guy celebrating my 12th birthday. A pretty normal thing to do. Except when it's anything but normal! 

So not ready to party
I haven't been able to have a birthday party in three years. In grade 5, while my body was immuno-suppressed, I caught a simple cold. When my birthday came around, I couldn't stop coughing long enough to be able to make a complete sentence. The simple cold lasted 6 months, and ended with me hospitalized on Good Friday with severe pneumonia in both lungs. Then in grade 6, I couldn't stop throwing up. Nothing stops a party faster than that. 

This year, well I woke up with a fever yesterday if that's any indication of how I'm feeling, and I'm in a lot of pain. It was my actual birthday yesterday, and how did I spend it? Trying hard to distract myself from going to the ER with how horrible I'm feeling. I see the medical team tomorrow though, so I'm doing my best to work through it. I'm not alone in being sick on my birthday, when you have an incurable illness, it's just what happens. The positive thing is that I was at home for my birthday which is a lot more than some other sick kids experience. 

Which brings us to the point of today! I wanted to do something to acknowledge my birthday. I decided that I'd invite the world to join me on social media to play a few online games, share a few stories and pictures, and to raise some money for Jacob's Healing Rooms at Sick Kids Hospital!

I've currently raised about $8000, which is an amazing amount, but I need your help to get me closer to my $60,000 goal. Today, I'm hoping that together with your help we can raise my total to $10,000. This money will help to bring smiles to the faces of children spending time in the Medical Short Stay Unit to get IV medication infusions. It will help to distract them from the pain and fear of the medical world. It will help families to connect and brighten the environment for patients, caregivers and staff! I couldn't think of a better birthday present.


These are the treatment rooms that I want to make child-friendly



















How can you help?

1) Participate!! I'll be tweeting (@KidWithCrohns) using the hashtags #JacobsHealingRooms and #HappyBDayJacob. I'll also be on my Facebook Page (www.facebook.com/jacobshealingrooms). Share & Retweet my activities, the more people that are made of aware of my project, the easier it will be to get to my goal!

2) Consider making a donation. My hospital fundraising link is: HERE  No donation is too small as it all gets me closer to my goal.

3) Have FUN!!

Saturday, December 12, 2015

Happy Birthday Jacob!

Dear Jacob,

Twelve years ago, I received the best possible early Christmas present, a wonderful son. I remember holding this tiny, perfect little person in my arms, and thinking that I could stare at him for hours. I had so many wishes of what I wanted for your life, but most of all I just wanted you to have all the happiness in the world, and I still have that wish.

As a parent it's supposed to be my job to make it all better. I'm supposed to be able to help fix it all. I struggle everyday to accept that your health is something that I can't make go away instantly. It hurts a lot to not be able to do something to make it better. And as much as I wish I had a "pause" button just so that you could have a break of this rollercoaster, but I haven't really found one of those in the stores.

This year has been both the best and worst of our lives. I see you struggle with your health every day, yet somehow you find the courage and strength to keep moving forward. I know that at times you don't feel like you have this inner strength, but it's clear to everyone who meets you that you do. I have seen you take the worst possible situations and work to create something beautiful out of the experiences. I've seen you shed tears of pain and frustration and as a parent, I wish that I could make it better. I wish that I could just snap my fingers and we'd both wake from this nightmare.

I also see the worries in your eyes as we search for answers to try to get answers to help you feel better. I've had so many of these worries in the past twelve years. The day you had your first seizure, 6 days before your 3rd birthday, and went unresponsive in my arms for 6 hours, it was the most helpless I had ever felt up until that point in my life. I was terrified that I was going to lose you before our life together really even began. But then you were diagnosed with Crohn's Disease and having heart problems as well, and suddenly that first seizure was nothing compared to what you've been through over the past 3 years. Life can just be so cruel at times, especially with all the holidays lately that you've had to spend at the hospital or in bed. I really wish that you could just be a "kid" again.

Despite all of the challenges that you've already faced over the 12 years, you've turned into this absolutely, hands-down amazing person. I always new that you were special, from the moment you started talking and walking, there was just something clearly different about you. I know that when I'm talking about you that I tend to start to get tears, and you always ask "Mom, why are you crying?" but I'm just so proud and amazed by you that I can't help it. The moment you turned to the surgeon and asked him to donate you colon to research to find a cure, it was clear to me that you were going to have a huge impact on a lot of people.

Then you created something unimaginable. You came up with another completely selfless gift, you wanted to make the Medical Short Stay Treatment Rooms at the hospital child-friendly, so that other kids would have a supportive environment that encouraged healing. But Jacob's healing rooms is about so much more than just the rooms themselves; you are inspiring others to make positive changes, you are showing others that one person can make a difference (even young people!), and you are giving others hope.  I am so incredibly proud of the young man you have become.

I am honored that I get to call you my son. I feel like the luckiest mom in the world to have a son like you. Always stay true to who you are because who you are is an amazing person to be. I wish you the happiest of birthdays my son.

Friday, December 11, 2015

Jacob's Song Pick of the Day (11/12/2015): "It's Not That Easy Being Green" by Kermit

Oh what a life this is. Today I picked the song "It's Not That Easy Being Green" by Kermit the Frog. Have a listen and read why I chose this song today:


Acceptance. How do you accept that you are who you are, faults and all, when everything seems to go wrong? How do you accept even the most horrible of situations, at the worst possible time of year, when all you want to scream about is how unfair it all can be? 

Surgery #14 to put in the GTube (feeding tube into my stomach) was now 3 weeks ago. What the doctors initially thought was possibly the chicken pox/shingles virus is turning out to be something somewhat nastier - a bad allergic reaction to the feeding tube materials. Each bandage change is showing more and more "damage" around the feeding tube hole, so yesterday my mom decided enough was enough and e-mailed pictures of the situation to the GTube team, who now also thinks that I might be having a significant reaction, and fears what type of reaction might be happening on the inside where we can't see. A very scary thought considering I have a lower immune system thanks to the immuno-suppressing drugs that I'm on. She then sent the pictures and the message along to the pediatrician who became alarmed and decided that I needed to be seen by several specialities (GTube team, general pediatrics team, dermatology team, GI Team). I really wanted to spend my birthday with my sister though, so they've let me stay home until Tuesday. 

But...

If they think that I might need to have a new tube inserted right away, or if an infection happens to develop (I'm at high-risk with an open-wound and this being nasty-infectious season), than it might mean spending Christmas in the hospital this year. I'm trying to stay hopeful but I also know that things can't keep going the way they are and I'm feeling worse and worse by the day. 

I am who I am and my body is what it is. I'd be perfectly justified in throwing an earth-shattering temper tantrum right now and scream about the unfairness of the world. But what would that get me? Yes, I complain. I answer truthfully when someone asks me "how are you?" even though it might not be the acceptable answer of "Fine thanks". I'm not fine. But I'm working on it. I'm holding on the best I can, trying to ignore the worries, the pain, the unhappiness of potentially spending yet another holiday in the hospital. Acceptance of "what is" is the only way to go. It's the only ticket that we have to our "happy ever after" party. 

And trust me, we will one day be having a huge "Happy Ever After" party. There might be no light at the end of the tunnel right now, but I think if we keep going we just might see the smallest glimmer at the end. 

I leave you with my favourite part of the song:
"When green is all there is to be
It could make you wonder why, but why wonder? Why
Wonder, I am green and it'll do fine, it's beautiful!
And I think it's what I want to be"

Thursday, December 10, 2015

Jacob's Song Pick of the Day (10/12/2015): "Hello" by Hedley

I hate goodbyes. Which is why today's song is a perfect choice: "Hello" by Hedley. Have a listen and read why I chose this song today:


This song gives me hope. I haven't been able to see my school friends in a very long time because of being sick, and I miss them a lot. When I get e-mail from them, it makes my entire day because then I know that they are thinking of me as much as I am thinking of them. It's about the connections that we build and how those connections can keep going even if time and distance get in the way. Regardless whether it's been a week since you last had contact with someone you care about or years, there's always a way to go back and say "Hello". 

Goodbyes might be right up there with the things that I hate most, right up there with ultrasounds in nasty places that I won't even mention. I have had to say too many goodbyes in my short lifetime. Since I've spent the majority of the last 3.5 years either in the hospital or in a waiting room at the hospital, most of the friends that I have made have been other patients. Sometimes we keep in touch, but a lot of times we just meet up when we're hospitalized together. I've also made a lot of friends with staff and hospital volunteers. Even though there might be several months before we see one another, when we meet again it's as though time hasn't moved on at all and we pick up the conversation where we left off. That's just the way it tends to be with hospital life, but it still... sucks. Some of the friends I have made have gone home to live their "healthy" life, but there have been some that have lost their fight, yet I still remember them and think of them often. The saying of "Some people come into our lives for a short time and quickly go. Some stay for awhile and leave footprints on our hearts. And we are never ever the same" is very much a reality in the world of chronic illness.

But I've also had to say goodbye to my "normal" life. There is nothing normal about having an ostomy, and a feeding tube, but it has become my normal. There is nothing normal about being too sick to go to school or to have a birthday party, yet both of those are my reality. I've had to say goodbye to Scouts, which I really greatly enjoyed, because I can't do the physical activities, even playing a game of tag would be way too much for me. I've pretty much had to say goodbye to a normal childhood.

"Goodbye" to me seems way too final, like I'm never going to see that person again. I like to think of "Goodbyes" as "see ya later", or "until we meet again", that implies that the interaction is going to continue after a pause. So if you ever do meet me in person, don't be offended if I don't say goodbye. It just means that our relationship is going to continue in the future.

As a side note, I'm so excited to be going to see Hedley in the spring for my 3rd time (thanks mom!) that I wanted to share just how excited I am to be seeing them with a few of my Hedley pictures:

 I think I'm just a wee bit of a fan of the band! If you ever get the chance to see them in concert, it's one awesome and amazing experience!

Tuesday, December 8, 2015

The Kindness of New Friends

Yesterday was just ... awesomesauce! Yes, it's an official word added to the dictionary last year, so I get to use it! I was invited to speak to the wonderful group of people at the Whitby Curling Club about Jacob's Healing Rooms and my love of the anti-bullying movement, ByStander Revolution. Considering that I forgot my prepared speech at home, I think it all went pretty well. I met some very nice and funny people who loved talking to me about all of my experiences (and science of course!). I even made them laugh, tear up, and smile!


The Whitby Curling Club's Book Club Ladies Division, The Monday & Thursday Day Ladies and the Senior Men had seen my newspaper article about Jacob's Healing Rooms and wanted to do something spectacular to help see my wish come true. Together they raised a total of $625.25 to be donated! This kind of generosity leaves me speechless. I love how so many people are coming together to get behind my special project. And I got to talk about all the special things that are close to my heart like Crohn's disease and Anti-Bullying.


I am so lucky to have so many caring and generous people coming into my life. It's people like this that give me the strength to get through my rough days. They restore my faith in people and remind me that there are great people out there just waiting to help someone out.

So a HUGE thank you to the members of the Whitby Curling Club. You all have done something amazing to help out myself and other sick kids. Can't wait to see you all again!

Friday, December 4, 2015

Mystery Solved... Maybe?

Everyone loves a good mystery, except when it's a medical mystery involving your own self. It's been 2 weeks since I had my GTube (gastrostomy feeding tube) put in and developing a mystery rash across my belly that no one could really identify. The little spots covering my whole belly area are starting to clear up but then something happened - I started blistering. I thought the rash was painful, but the blisters are .... ouch. What could possibly be eating Jacob?

Yesterday my home nurse came for a visit to close my file since my mom is ok with all of the nursing, and she's pretty good at it. The nurse looked at my GTube area and she noted that the blisters are in a pattern that follows along with the movement of my GTube itself. Wherever the GTube touches my skin, I get a blister. It's so crazy that in less than 24hours the tube will actually "eat a little ditch" through my skin and be stuck to me. And that's each and every night.

We're going to test out the theory that I'm allergic/reactive to the GTube materials. We've put down a piece of Skin Protectant Tape between the tube and my skin. If no new blisters, then I'm pretty sure we can say that it's more likely to be an allergy.

My doctors often refer to me as "the mystery" because if there is a very slim chance of something happening, it would happen to me. Seriously, I'm not being dramatic. There was a tiny chance I had Crohn's and not Ulcerative Colitis as they originally thought, and it turns out I had Crohn's. Then there was a tiny chance that I would aspirate the NG Tube Feeding, and I did ending up with pneumonia. There was a <20% chance that I would develop psoriasis as a reaction to the Remicade, and I did. And there was only like a slim chance of being one of those patients who don't respond to any therapies. I'm one of those patients. And now this comes up with the GTube. I know it must be frustrating for my doctors, I know that it's 100% frustrating for me and my family. But life happens in the most unexpected ways. Hey with the odds I have, perhaps I should start picking lottery numbers for people!

I can't wait to be able to go in to the hospital and announced that I solved the great mystery of "What's eating Jacob?".

Wednesday, December 2, 2015

Jacob's Online Birthday Bonanza to Benefit SickKids

If you're reading this, and I hope that you will, you're invited to join me online for a huge celebration!

December 14, 2015

You might be asking "What are we celebrating Jacob?" at this point. Well, it's my 12th BIRTHDAY! 


I haven't had a birthday party with friends in 2 years. In grade 5, I had a respiratory infection that eventually led to the development of severe pneumonia. Last year, I spent everyday throwing up and I didn't think that it made for a good party trick. Or at least I haven't been to a party yet that involved party games like "Who can run fastest to the bathroom?" or similar game names. This year, once again I am not feeling physically well enough to have a birthday party. I am still sore from the surgery to put in the GTube (long term feeding tube in my stomach), and am having some complications from a mysterious reaction or infection or virus that has left my stomach blistered. Ouch doesn't quite cover that. 

So I had a fabulous thought when I realized my birthday was fast approaching again this year: What if I could turn this negative into a positive as well? What if I used my birthday to do some more good in this world? 

Welcome to Jacob's Online Birthday Bonanza to Benefit SickKids!

I'd like to invite you to join me for my birthday, but since all of you can't be with me in person, I'll have to settle for online. Look for my tweets throughout the day, I'll have some fun songs lined up, have a few party games, and we'll spread some kindness and positivity. Starting today I'll also be putting out my #12daysofJacob - a picture to celebrate each of my birthdays so far!

Instead of gifts this year, I'm asking for donations to be made to my Jacob's Healing Rooms project at Sick Kids Hospital. You can read about exactly what Jacob's Healing Rooms is about by clicking HERE.  Being able to bring smiles to the faces of kids going through outpatient treatment is a huge gift for me. So far I have raised close to $6000, which is an amazing 10% of my overall goal. I can't wait to see what we can do together for my birthday! 

Only with your help can we make my wish to help other sick kids come true! Please join me for my birthday celebrations, I can't wait to see you there! 

Be sure to follow the hashtags: #JacobsHealingRooms & #HappyBDayJacob!

Tuesday, December 1, 2015

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

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


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

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



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

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