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,

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 ( 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. 


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!


Monday, November 30, 2015

A Thank You to a Special Friend

Every now and then some kind stranger comes into your life and their actions leave you feeling completely stunned, but in a good way. I'm lucky enough to be able to say that I've had this happen quite often lately for me. I'd like to tell you about one of these special people: Colitis Ninja (@ColitisNinja on Twitter). Colitis Ninja does a lot of awareness work in the IBD Community, through blogging her experiences, sharing support on Twitter, and creating fabulous IBD Ninja items. One of the wonderful things about Colitis Ninja is her positivity. Living with a chronic disease is difficult, but staying positive in light of the many challenges that come our way, can at times seem like way too big a job. Through humor and positivity Colitis Ninja shares what she's gone through over the years. You should definitely check out her webpage at:

I want to thank Colitis Ninja for being so thoughtful in sending me a fantastic get-better shirt:

The shirt says "I'm a Crohn's Ninja" and here I am doing my best ninja posing. I love my awesome shirt! I'm proud to be a Crohn's Ninja but I'm prouder to be able to call Colitis Ninja my friend. Thanks for being awesome! 

Sunday, November 29, 2015

Giving Tuesday is Almost HERE!

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

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

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

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

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

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

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

Hospital for Sick Children Donation Page

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

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

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

Friday, November 27, 2015

What's Eating Jacob? - Surgery Recovery Update

"Wow Jacob, you've been really quiet, how's recovering from surgery #14 going?". Not good at all.

I sit down to write a blog post and as I'm in the middle of it, something comes along to change everything. This happens about every 15 minutes of the past 3 days. It's quite dizzying how fast things have changed.

I'm HOME! That I guess is the biggest change of all, I wasn't sure they were ever going to let me out of the quarantine ward, where 10 minutes can feel like 10 hours. They were really thinking that it was chicken pox/shingles but the painful torture test known as skin sampling didn't show the virus and neither did the blood. That's great and all, but the question remains: What's Eating Jacob?

Infectious Disease is leaning towards a reaction to the GTube (feeding tube) materials, but since that's not their area of expertise, they can't really say (which is exactly what they said). GI seems to be questioning the GTube material theory as well. It really does worry me if it is the GTube itself, because what then? What do I do to get my nutritional needs met? Dermatology says that sometimes we can develop a rash for a reason that no one can figure out, so we might never know what it is exactly or why.

So I am home but looking at the calendar, I'm going to be spending a lot of time in car going to doctor's appointments between now and 2016. On Monday I'll be seeing the GI team again for them to have a peek at me, then it's Infectious Disease a few days later, then Dermatology sometime in there, as well as a visit to the new cardiologist specializing in electrical problems. Maybe he can give my body a jumpstart.

In the meantime, I'm being tortured by steroid creams which really super-duper hurt to put on, and am taking, according to my pharmacist, an extremely high-dose of a potent anti-viral (valacyclovir).

And that my friends, is the much overdue update on my health.... Now back to my fundraising and spreading happiness to others I go!

Tuesday, November 24, 2015

Jacob's Song of the Day (11/23/2015): "I Was Me" by Imagine Dragons

Today's song choice is inspired by kindness and the power that we all have to make a difference in this world. I have picked "I Was Me" by Imagine Dragons. Have a listen to the incredible explanation that Dan Reynolds, the lead singer for Imagine Dragons, gives for the creation of this song (no official video has been released):

Celebrities have such great power to be able to influence and motivate people to make positive change. Imagine Dragons has created this special project, the #One4 project, to help with the humanitarian efforts assisting the refugee crisis in Europe. All proceeds from sale of this song will go to the cause. This is even more important now than it was when the project was first created because as a response to the recent terror activities, many countries and people are turning their backs on those who are most in need. I especially love that he's holding up a sign saying "#One4 Love" because love is what this world needs. We need to help each other, to give each other a lift up instead of a kick back down. We need to stretch our hands out to strangers and say "Look, we care".

Yesterday at the hospital, I was playing my favorite afternoon kid's game show, Name that Tune, where the winner gets to receive a prize. All the prizes have been donated to the hospital for us kids to have something nice, perhaps to reward us for good behavior or putting up with the painful treatments! Either way, it's such a nice gift for people to give to all of us who have to be in the hospital for awhile. Oh, and yes, I tied for first place yesterday.

When the prize cart came around, I knew right away what I wanted, I wanted to pay forward the kindness of the people who made a donation to the hospital by making my own donation. I chose the ITunes gift card so that I could order this amazing song on my ancient IPod. It really is a win-win, I get a great song and refugees get a little bit more help. More than that though, it makes me feel good to know that perhaps I might have done something good, something to help contribute towards making a positive change in this world.

If you have an Apple Product, please consider downloading this song. Remember that at one point in history, many of our ancestors were also immigrants looking for the same chance that immigrants are looking for today; hope, love and freedom. Remember that the actions of a few people, do not represent the actions of an entire nation of peoples. Think of how different your life may have been if your ancestors had never left their home country to give their kids, and their kids, a chance to have a safe place to grow. Instead of making it an "us vs, them", let's show some compassion and kindness.

Sunday, November 22, 2015

How Not to Recover From Surgery or How I ended up in Quarantine

I have to admit, I have style. I don't do anything the easy way, and when I do something, I commit to it 100%. Day 2 of recovering from surgery to get my GTube placed didn't go as planned, even if it did start off with the idea that I'd be going home today (day 3), plans can go horribly wrong.

It started off with just normal recovery pain and the day went downhill dramatically from there. In the morning, my mom noticed that I was started to get a rash across the belly. The doctor wasn't sure if it was some irritation from the surgical soap, so we took a wait & see approach. We still planned on going home.

The afternoon came, as it tends to do since it follows the morning, and the rash has now spread to the other side of my stomach. Not only that but I'm having a lot of sinus tachycardia. It's now starting to get to be a bit more of a concern, and the nurse mentioned it to the doctor but the doctor still felt that it was a reaction to something.

Finally, the evening comes. The rash has now taken over most of my abdomen. The nurse put in a call to the general pediatrician team to come have a look and when they do the last thing I expected to hear is what I heard: We think it's chicken pox. 

The doctor gave me a dose of Benadryl to try to calm the itching and rule out an allergic reaction. The rash didn't react to the Benadryl, but my heart sure did. I became extremely dizzy, feeling like I was going to pass out and shaking. I later found out that Benadryl is a potential "conditional" medication for a prolonged QT rate of the heart, which is a fancy way of saying that given the right circumstances, the medication may put me at higher risk of having a "heart event". Benadryl is so not a good idea so I lay here rubbing my itchies on the bed.

By 2am, the doctors has been in to look at the rash about 4 times. They decided that I needed to have skin biopsies done to test for infections. At about 3:30am they took a needle and poked about 8-9 different spots that I had in hopes of getting a sample with enough stuff that they could test. Then they had to send for the IV team to start a new IV after I blew the other, and to get bloodwork at the same time.

4:30am and the IV team showed up, they were able to finally find a vein, which was really exciting for me. They immediately started acyclovir, a powerful anti-viral because I have very little of an immune system left thanks to the medications that I'm on.

By 5am I was finally moved to the quarantine ward as they wait for answers to the question that's on everyone's mind "What's eating Jacob?". Since I was moved to a different ward, of course that means a new team and a new intake which ended with the nurses saying that we could expect some company at 7am to do a nursing shift-change. I think this was about the point in time when I realized that day 2 & 3 were just going to be one very, very long day. I'm obviously not going home today.

I've been vaccinated against chicken pox. Unfortunately for some kids who have been immuno-suppressed like me, can lose their antibodies to the vaccines they have had. This is why it's so important to have vaccinations. Chicken pox might seem like a common everyday illness for most kids, but for kids like me it can be dangerous. My heart hasn't settled down yet so I'm still hooked to the monitors, and the pain in my skin has been awful. The antibiotics used to treat the virus could quickly lead to dehydration which wouldn't be good for my heart. There's nothing simple about this "simple childhood illness" for me.

I may have come for the tube, but I'm staying for the quarantine.

Friday, November 20, 2015

The Day After

I'm alive, or at least that's what my heart monitor tells me every nanosecond that it beeps. It's been a VERY long day recovering from surgery #14. I've actually been up since about 3am, you have to love when you just can't get comfortable. I've been in A LOT of pain and today's busy activities didn't help any at making it better. 

Early this morning they decided that they would do my ultrasound to check out my bottom. Well, apparently checking out your bottom really means directly checking out your bottom with the wand. Without anything to relax you, or for pain. I have a new "most dreaded" hospital procedure (and anyone who knows me knows how much I hate the NG Feeding Tube). The kicker was that they couldn't get a really great visual on it because of the pain during it and not being able to get the probe into a good spot to have a good look around. But I guess the doctors saw enough because they said they didn't see a reason why I was passing so many blood clots. Awesome that you didn't see anything in there, but I'd love to know why I can't sit or stand without a lot of pain and pressure, and why all of a sudden for the first time in 3 years I'm passing clots.... things that make you scratch your head and wonder. 

I was in sooo much pain after the ultrasound, I had tears streaming and was crying out in pain the entire time. 

Then came time for the dressing change over the GTube (feeding tube) site. I forgot exactly how much it hurt to have dressing changes done. I've got two more to look forward to tomorrow. I'll try to hold back my excitement about that. 

I finally was able to get some Tylenol for my pain in the late afternoon, but truth be told, it didn't do anything for the pain. I'm trying so hard to pretend to be ok, I've told them that I've been in severe pain a few times today but have to try to get used to it on my own. I'm really hoping it gets better. 

Thursday, November 19, 2015

Operating Room Trip #14 - I came, I saw, I got "tubed".

Today is the first day of the rest of your life. It's weird going to bed and knowing that your entire life is going to change the following day. It's strangely exciting and worrisome at the same time. Today is going to help improve things in my life.

One of the problems with Inflammatory Bowel Disease (IBD) can be some pretty stellar weight lost. I don't recommend this weight loss plan though. I've had 4 hospitalizations in 3 years because of my nutrition and weight loss, which can happen pretty quickly when you have problems getting food in and digesting it. Because my Crohn's Disease is the worst in my stomach and duodenum, daily nausea and vomiting have been a huge issue for me, and I have a hard time digesting foods properly. Which also means I'm not getting the full nutrient value of the food. If I don't get the nutrients, I can't grow correctly. Sometimes when I am having a really bad flare of my Crohn's (above my normal flare), the doctors take away solid food and I get my nutrition only through my feeding tube. This helps to give my stomach and small intestine a chance to heal. Since February I have had tube feedings daily through a Naso-Gastric (NG) tube, fed up my nose and into my stomach. It's one of my most hated procedures. I'd even rather have bloodwork. It's not that it's painful, it's just the feeling of it going up the nose and then down the back of your throat. Ugh, heebie, jeebies.

After 9 months with an NG tube, we've decided that nutrition is going to be a long-term problem. Today I took the step of allowing them to surgically place a gastrostomy tube (GTube). It's kinda cool since it's like a body piercing, only it's in my stomach and has a tube sticking out the middle. The "hole" will heal to form a tunnel straight from my skin and into my stomach. Awesome science at work. But it also means that I have something else taped to my body other than just my ostomy bag.

Surgery went well. The doctors still called me "medically interesting" because they couldn't place the tube in the usual spot because my rib was in the way and my stomach was too far over. So they had to place it more in the middle, but that was the only glitch today. My heart's running fast tonight but they're watching me closely and cardio is supposed to come around and have their poke and prod with the rest of the medical gang.

Today is the first day of the rest of my life and I'm quite excited about that future. I was able to see my favorite clown who came by for a visit and he heard about my $1 donation campaign for Jacob's Healing Rooms to make child-friendly outpatient treatment rooms and gave me a donation! It helped to lift my spirits to still be working on my fundraising even while recovering from surgery.

Speaking of recovery, the pain is starting to hit. It's time for me to get some much needed rest finally.

Huge Hugs Going to Everyone!

Wednesday, November 18, 2015

Jacob's Song of the Day (11/18/2015): "Blue Skies" by Ella Fitzgerald

Today's song of the day is inspired by the idea of accepting reality, no matter how difficult it might be. I have picked "Blue Skies" by Ella Fitzgerald. Have a listen and read why I chose this song today:

"Nothing but blue skies from now on".  It's been a crazy month, even by my own standards. I'm fresh out of surgery #13 and tomorrow will be going back to the operating room for #14, the placement of the GTube (long-term feeding tube).

I've had a week to adjust to the news that we were moving ahead with getting the permanent feeding tube. I wrote a post about my worries and fears when I first found out about it that you can read HERE.

Today I came to the realization that I'm ready. I know that I'm going to need long-term nutrition support; I've been admitted to the hospital 4 times in the last 3 years just for that. I've lived with this NG Feeding tube snaked through my nose and into my stomach since last February. I'm ready to get my face back and remind my friends what I look like without it all there. I'm ok with the fact that this is going to be very long-term. I have such horrible anxiety with the NG Tube insertion so I'm taking comfort in knowing that I won't have to worry about that in the future.

Acceptance is a strange thing. I didn't think I could ever get used to injections but after awhile, it's not that bad (except for some meds that sting!). I didn't think I'd ever, ever accept the fact that my "human waste" is collected in a baggie, but now I barely even think about it. Sometimes I even forget about the NG Tube in my nose until someone asks about it or stares at me strangely. My medical equipment is really just the super-bionic part of me. I wish that it gave me super-powers though.

I think with chronic illness, acceptance is a struggle for a lot of people. Nobody wants to live with an incurable illness that may require a lot of medical attention. Nobody wants the medical interventions that can go with some diseases. Yet, if we want to stay as healthy as possible, these medical treatments are necessary. To fight against them, at least in my case, would be a losing battle. As I see it, the only choice is to accept the changes and adjust to the new normal. And by choosing to accept what is happening to my body, I'm at the same time choosing happiness and hope.

Tuesday, November 17, 2015

The value of compassion

Compassion - a deep concern for the suffering of others that comes from a place of understanding. The world needs more of this, we don't need to look any further from the latest headline news for proof. But even in our everyday lives, we need to live and treat each other with compassion. 

Yesterday was the perfect example of how compassion could have made a difference in my life. I've been missing quite a bit of school, especially for the past two weeks because I've been passing large blood-clots out of my bottom and in some serious pain when I'm sitting upright for too long, or when I go from sitting to standing. I've already mentioned it to the doctor who is going to do more testing to find out what's going on with it, but first thing is first and I need to get through my GTube insertion on Thursday. 

The school board is aware of my medical needs and absences, my cardiologist had to send them a letter before I was even allowed to start attending this year and said that "so long as he feels physically up to it that day, it is safe for him to attend". Fast forward two months later, and all of a sudden I get a call saying that if I don't produce a doctor's note BEFORE I go into surgery on Thursday, they are going to cancel my school registration. That also means that I might completely lose my spot in the gifted program. School is everything to me. My school knows that I'm going for surgery on Thursday and will likely be out at least two weeks. Yet the school board is firm in saying that they must have this note. My mom even asked if she could get one when I'm admitted to the hospital on Thursday but they said no. So now my poor mom is left scrambling trying to find a doctor to write a note TODAY because this is the only time she had left to do last minute things before surgery thanks to other appointments. 

I understand that the school board has policies and procedures but I think the way they are enforced needs to reflect the humane values of compassion and respect. A few days is not going to make a difference in the wording of the note. But it is going to give my family the time we need to be able to track down a doctor. There needs to be some flexibility in certain circumstances. It would have made a huge difference in our lives this week because it would be one less stressful thing added to the plate. 

The moral to my story: You don't always know what's going on in the life of the person you are interacting with. By offering kindness, compassion and respect - really basic things that we're all capable of - you can be the difference between pushing someone over the edge and being a "helper". I know that I would greatly prefer to interact with those that can be "helpers". 

*I'm not saying this to be mean to the people involved in this situation, I'm giving this story to highlight a serious flaw with a huge impact and the need for change*

Monday, November 16, 2015

Taming the Dragon - Health Update

The thing about living with severe, refractory Crohn's Disease is that it's relentless. It doesn't give up because I'm tired, it doesn't go away because it's decided that I've had enough. It's like this dragon that's always sneaking around inside and starting fires. Some fires get put out but others grow and smolder. We can try to calm the dragon down, but he likes to get angry real quick and often at the worst possible times. I wish that I could just put the dragon on the time-out chair and tell him that he can't come out until he agrees to play nice. Only in a dream world.

Last week's GI appointment was better than one before, at least we agreed on my diagnosis (I do 100% have Crohn's Disease) and that we would NOT be talking about a reconnect surgery (reversing my ostomy by building a JPouch inside me to collect waste), at least not anytime in the next several, several years. There was more inflammation found on this set but at least it's not back to the epic level of disaster that it used to look like inside me. Still not great and not the level of healing that they were hoping to have seen.

We've entered a new phase of my Crohn's journey. The doctors have now moved to symptoms management. What does that even mean? It means that there isn't much more they can medically do to get me into remission, so we're going to try to get some of my symptoms under control. I'm not sure how I feel about this statement yet. I want to feel better, which means that we have to manage my symptoms but I want what's causing my symptoms to go away in the first place. I know that we aren't going to be able to cure this for me right now, there is no cure for Inflammatory Bowel Diseases, but I want to go into a period of remission like I see my other IBD friends having. I'm realistic though and looking at the reality of not having achieved remission in 3.5yrs, I know it's not likely to come along anytime soon. But I still dream of it, hope of it, and try to imagine what it would be like. In the meantime, I do need symptom control so that I can get back some quality of life. I need to be able to get back to school, see the friends I haven't seen very much of in almost 2 years. I'm looking forward to getting some of these symptoms under control!  Hopefully we can make the dragon a bit happier.

I guess the first step of that will be later this week with Operating Room trip #14 to get my permanent feeding tube put in place.

Friday, November 13, 2015

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

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

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

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

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

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

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

Thursday, November 12, 2015

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

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

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

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

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

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

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


It's G-Day! (a.k.a. Biopsy & Scopes Results Day)

Welcome to G-Day, my short form for "Go-Going-Gone Day". Today I get the results back from round #12 of the scopes & biopsies to see how the Crohn's Disease is responding to the latest treatment we're throwing at it - Stelara. Judging by the calls coming in to my mom, I'm thinking that things aren't going to be as awesome as the last set that showed improvement. They've already told my mom that there was more significant inflammation.

Today things need to change. I haven't been able to go to school in a week because when I stand up, I'm so dizzy that I want to fall over. Even just sitting down, I'm dizzy. I can tell you one thing for absolute certain - when you're feeling like you want to throw up, the feeling that everything is moving while you're standing still is NOT helpful! I've also been in more pain lately, but I don't really admit to anyone that I'm in pain, including myself. I'm scared that if I admit I'm in pain that it's going to set off this huge chain reaction of events beyond my control. Yet more and more lately I'm not able to meditate away or ignore the pain.

My mom learned just how rare I really am this week. She was talking to the Stelara drug representative and out of all the patients being treated at the largest children's hospital in Canada, there is only one other child that is on this particular treatment. I knew I was "special" but that special? I wish that things could just once be straightforward with no complications.

Something else really upsets me more than all of this though. There are treatments available in the world that I could try that are not available to me in Canada. For example, the latest Stelara studies to be done, showed that from a control group, to a 130mg group to the 6mg/kg group, the individuals in the 6mg/kg group showed the greatest improvement. The 130mg group had a tiny bit of improvement over the controls. I'm on 90mgs. If we go by weight, I would need about 300mgs, which is an IV infusion dosage. This is an available delivery method in the US, but not in Canada, here we only have 45 or 90mg injections. Then there's the newer medication, Entyvio, that's being used in Pediatrics in the US, and available to adults in Canada, but is months away from being approved here. These are two options that could really benefit the IBD community, especially people like me who haven't responded.

Go, going, gone. I wish that we could GO to this appointment knowing that things are GOING to get better to get these symptoms GONE. As I said, it's 'G' day!