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

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

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

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

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

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

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

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

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!

Everything Changes - Jacob's Health Update

It was a completely unexpected call that came out of the blue and announced that it was going to change my life for a very long time. Yesterday the GTube (a feeding tube placed into the stomach) clinic called. Apparently, the doctor has re-evaluated the situation after having had the gastric scopes just done, and decided to change his mind considering that at our last appointment it was said that considering my weight gain they likely wouldn't be doing the procedure. Now here we are 2 months later and the procedure (my 14th sedated procedure in 3 years) is going to be done next week.

I'm scared. This has all seemed to happen so fast that I haven't had time to adjust my thinking yet. When I'm faced with a new situation, I like to twirl the idea around in my head a lot, it's my way of coming to terms with some pretty tough situations. I find that by taking the time to look at the situation from all sides really does help to put things in perspective and accept what's about it to happen. When I first had the idea of my colectomy brought up, I felt the same way - terrified at first but as I twirled it around, I slowly came to terms with the idea.

I'm worried that it's going to hurt, that it's going to leak, that I'll somehow pull on the tube and have it break or worse, come out all together. I'm worried about there being this hole into my stomach, even though I know that it's all going to heal around the tube.

On the flip-side, I'm looking forward to getting this NG Feeding Tube off my face. I've had a tube taped to my cheek since February, so I'm looking forward to seeing my whole face again. I know that I'm going to need long-term nutrition support for my Crohn's Disease, so I'm thankful that I won't always have to worry about changing the NG Tube, which is one of my least favorite "experiences". It's going to give me some life back because I'll be able to get a portable feeding pump, which means that when I need to be hooked to fluids or feed for the majority of the day, I won't have to worry about being attached to my dancing partner, the IV pole. I don't have to worry about missing school because I need to be hospitalized for IV nutrition (TPN). I can go on vacation or daytrips much easier.

While it is scary, it really is something that needs to happen and will hopefully go on to improve my life. Sometimes we just have to take a risk, a leap of faith, in order to get the greatest of rewards.

In Remembrance: Jack Cornwell

Today, on Remembrance Day, I honor Jack Cornwell, a boy who died way too young during World War 1.

Like I was, Jack Cornwell was a Boy Scout living in England during the first war. Scouts back then were actually trained as "battle assistants", scouting out enemy locations, navigating, and basic first aid skills. At the age of 16, Jack volunteered for service aboard a warship. Then the battle of Jutland happened.

Jack's ship was heavily attacked as the Germans tried to advance further into Europe. Jack took over controls at one of the ship's guns after the marine was killed. In a short time later, all of the ship's gunners were dead, except for Jack. He continued to hold his position at the gun for 15 minutes despite being mortally wounded which helped to prevent the Germans from taking control of the waters around Denmark. After the battle, Jack was posthumously awarded the Victoria Cross for bravery.

Scouts has named one of their highest awards of merit The Jack Cornwell Decoration. It is the highest honors given to a Scouter who has demonstrated great courage and bravery while undergoing great personal suffering and giving back to their community. In the 2013-2014 Scouting year, I was one of the 4 people selected to receive this great honor across all of Canada. I am truly honored to wear this pin, as it reminds me of the amazing thing that 1 young person has done that really did make a difference in this world. It reminds me that strength comes from a complete determination to face your challenges, no matter how frightening, head on.

Thank you Jack for giving your life so that others might have freedom.

Jacob's Song of the Day (11/10/2015): "Everything is Everything" by Lauryn Hill

Today's song is about accepting the cards that you've been dealt and moving on. I have picked "Everything is Everything" by Lauryn Hill. Have a listen and read why I chose this song today:

I've been thinking about purpose. I believe that there has to be a purpose why I'm living with Crohn's Disease. That all of my experiences have to mean something. I refuse to believe that there's nothing to be learned from this rollercoaster of a life, that it was all for nothing.

I'm a science kid. I love learning new things about science and talking scientific theories with everyone that I meet. One thought that really sticks with me is the idea that everything in our universe existed from the second that it was created. It's a theory of the universe coming from a point called a singularity, picture it as an infinitely small point containing everything that has been and ever will be, which blows up (The Big Bang) and creates the universe. Everything that has happened historically since that point was already a given possibility because the universe contains everything that there ever will be. Here's the most awesome thing about this theory: If all of the possibilities are already available to us and we just have to find them, then that means cures for chronic diseases and terminal illnesses are out there. That we just have to keep looking and asking questions. We have to keep trying out new theories to explain why things happen the way they do. It means that there is hope out there. Hope for better days, better treatments, and even a cure.

I like to picture this singularity as the tiniest pinpoint of bright light on a completely black surface. To me, this glowing dot represents hope and its purpose is to bring light to that black surface and create something amazing in it. From this tiny pinpoint of light came all of these amazing little twinkling lights in our skies, lighting a path through the darkness. It's hope spreading and bringing comfort for brighter days. The little stars are like the wonderful people I've met and who have supported me on my journey, they've brought light through my dark days. I like to think that my purpose one day will to be a light for others who are going through this and other personal-related challenges. To remind them that no matter how dark the day seems, there's always a little light, a little hope, at the end.

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

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

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

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

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

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

My Ostomy Story - 6 Things I Want You to Know

February 7, 2013 my life changed forever. I was 9 years old, and had lived with severe Inflammatory Bowel Disease for 7 months. I had run out of medication options to help get the inflammation under control and needed to have my colon removed in a procedure known as a sub-total colectomy. I then had to have an ileostomy to create a new way of eliminating poop from my body. Since that time I have lived life wearing a colostomy bag, something you rarely hear people talk about in public. I would like to share here what I want others to know about life with an ostomy.

6 things I wished others knew about life with an ostomy:

1. It's ok to have mixed feelings. I both wanted and didn't want this surgery at the same time. I had spent the last several months before my surgery either in the hospital, in the ER, or in a doctor's office. I had missed a lot of school and the chance to make new friends as I had started at a brand new school. I was tired of being sick all the time and just wanted life to go back to normal. But on the other side of things, I knew that this surgery might mean living with an ostomy forever. I didn't know what it would be like to look at my body after the surgery and worried that my stoma would get damaged easily. I worried what others would think if they knew. Would the kids at school tease me and make fun of the fact that I was even more different? This surgery is a huge life-changer that like life, has both positives and negatives. It's ok to think and feel both sides of this situation.

2. It can be embarrassing. There's no shortage of things that can happen when you have an ostomy. Leaks are one of the major problems with the bag. And they will happen at the most inconvenient times possible. Such as when you are stuck in major traffic and have nowhere to go. Or when you're in a public place and forget your supplies that day. "Releasing gas" or as my friend Jen puts it "Stoma squeeks" are another problem. And they will happen the moment things around you turn silent. There is absolutely nothing you can do to avoid this from happening, so it's best to develop a sense of humor when it happens.

3. There is no shame in having an ostomy. Earlier this year, an anti-smoking campaign featured a commercial with a lady talking about her ostomy bag that she had to get after developing colon cancer from smoking. Having an ostomy was shown as being absolutely disgusting and essentially something to be ashamed of. There are a lot of reasons why a person might need an ostomy, and most of them are for life-saving reasons. If my colon hadn't been removed, I could have died if it perforated. Being able to live is much more important than the inconveniences of a bag. Yes it can be gross to empty, and of course there is a smell, but I'd rather deal with that than not have a life.

4. An ostomy doesn't change who I am. It changes how my bodily wastes comes out, that is all. I am still human and have feelings. I still get worried about what others might think. I still have dreams and fears. I am still capable of most of everything that I was before I had the surgery (no more dodgeball thankfully!).

5. I don't mind you asking questions about it. I'd rather you ask me questions than to shy away from me or avoid me. I don't mind talking about it because it brings more awareness to something that no one talks about. I had never even heard the word "stoma" before 2012 when both my grandfather and I had to have ostomy surgeries (my grandfather is stage 4 bladder cancer survivor). Since then I have met so many kids who live with an ostomy bag, and have helped a few who were going to be going through with the surgery. It's only through talking about it that we can build awareness and acceptance.

6. I don't regret the surgery. Going into the surgery, we had thought that it was going to be a temporary solution until they did an ostomy reversal surgery known as a JPouch surgery. I think in the back of my mind I knew that this ostomy might be forever. My thoughts were confirmed when a few months later I was diagnosed with Crohn's Disease and likely will never be able to have an ostomy reversal. I'm ok with that. My ostomy gave me a bit of a life back again. It helped so that I could at least be at home with my family instead of in the hospital. I'm proud that I was able to accept the situation and turn it into a positive by donating my colon to research to help find a cure for this disease.

Life goes on after an ostomy. It's an adjustment, but you do go on to make a "new normal". Some days will be completely frustrating but when you remind yourself of what life would be like without it, there really is no choice other than to carry on. My ostomy reminds me daily that I am a survivor.