Giving Tuesday 2018

Giving Tuesday 2018 starts with a picture:

They say a picture is worth a thousand words, so what words would you use to describe this room? Imagine being a child, how would you feel walking into this room? What comforts do you see in this room for a child who is feeling scared, alone, worried, or sad? How would you feel if I told you that for the next 8 hours, this room would be a place that you couldn't leave?

Now what if I told you that this is an outpatient treatment room at a children's hospital? 

My first impression of this room goes along with words like "heavy", "depressing", "discouraging", and "boring". In order to "win" a trip to this room, I had already failed other treatments to get my Crohn's Disease under control, so there was already this feeling of having been defeated. Now, I was going to start a new IV treatment, where the potential for serious reactions meant that it had to be done in a carefully monitored environment. It was so carefully monitored, that for the duration of the treatment, you need to pretty much stay in your chair, with the only distractions other than medical equipment being the items you brought with you that day. These were the rooms where I was started on Remicade treatments, and after failing Remicade, received on-going iron infusions. This is the room where I sat wondering how this treatment would make me feel, if it would be helpful, what reactions I would experience from it, and plenty of more questions. This is the room where up to 6 other patients are receiving their own IV treatments, but you can often tell that they too, are just as worried and feeling the weight of the world on their heads. This is the room where you often find out whether you are responding to the treatments. This is one of those rooms that you'll likely remember for a very long time to come.

As most of you know, I've spent A LOT of time at Sick Kids Hospital in various departments for my ever-growing list of medical challenges. I've had a lot of opportunity to compare other areas of the hospital with this area, and really, there is no comparison - this is one of the areas of the hospital that is in desperate need of an update. Unfortunately, this is also one of the areas of the hospital that is severely under-funded within the hospital's budget, with the majority of the general fundraising going to help other areas of priority. The result are these rooms where the environment does little to help lift, engage and support the patients who use them.

This Giving Tuesday, I'm asking once again for your help to make my dream of child-friendly outpatient treatment rooms come true. These rooms should help to encourage healing, give hope, lift the spirits, distract from the worries, and inspire others. Jacob's Healing Rooms project at Sick Kids hospital will help to make treatment day better for all of those patients who will use one of these rooms in the future. Your generous donations will help to purchase materials such as covers for the awful lights, bubble tube machines, a fresh coat of paint (in a different institutional color!), as well as electronic gaming machines that will hopefully allow patients to play together as a way of building peer support.

I'm closing in on my goal, $42,000 out of $60,000 raised so far, but I need your help to turn my wish into reality. Please consider making a donation today to Jacob's Healing Rooms project at Sick Kids. Together we can make a huge difference in the lives of kids who are fighting for better days. Together we can make treatment day a bit less scary and depressing. Together we can change the whole treatment experience.

To donate: https://www.sickkidsdonations.com/registrant/FundraisingPage.aspx?RegistrationID=3641076

THANK YOU!

#MyGivingStory - Giving Tuesday Plans to Help Sick Kids.

#MyGivingStory starts with a diagnosis. In July 2012, at the age of 8, I was diagnosed at The Hospital for Sick Children (Sick Kids) with severe Crohn's Disease, a type of Inflammatory Bowel Disease. Over the next 3 years, I would have many ER visits, hospitalizations, medical appointments and have been wheeled into the Operating Rooms 13 times. One of those visits was to lose my colon which I donated to science to help find a cure for this disease so that others wouldn't have to go through these struggles.

Last winter, I was receiving Remicade IV treatments again. Remicade is one of the medications that is often used once a patient has failed to respond to other medications. Patients at Sick Kids will be started on Remicade infusions as an out-patient, and receive their first 3 sets of infusions in the group treatment rooms. Here's what the treatment rooms look like:

As you can see from the pictures, the rooms are very plain, and do little to offer distractions from the medical treatments or a source of entertainment for the kids. There are two televisions suspended from the ceiling but they are out of the control of the kids since the remote is attached to the bottom of them. And there's always a problem on agreeing what to watch since the person sitting next to you might not like what you want to watch. I've spent 8 hour days in rooms like this while getting my IV treatments.

If there's one thing I learned through my journey, it's that distractions help in the healing process. They can take away the anxiety that you feel when getting treatments, the worries about whether it's going to work, distract from the pokes and the pain. Having a positive outlook helps greatly in the healing process. When you are feeling "down", the pain and other symptoms can make you feel even worse. Feeling encouraged, supported and hopeful are extremely important in the healing process since the disease effects us emotionally as well as physically. So I came up with a plan to help make this happen.

I asked my mom if for Christmas I could ask for the ability to transform this place into a child-friendly place of healing and hope and the plan for Jacob's Healing Rooms was created.

For #MyGivingTuesday I'm asking for $1 donations to Jacob's Healing Rooms. Your money is going to help me to install tablets at each treatment chair so that patients will have a source of entertainment, be able to connect with other patients in the hospital and across Canada using UPopulis, check their e-mail and of course, play games. In each room, I'm going to purchase a colorful bubble-tube machine as a source of distraction and brightening up the room. I'm hoping to get a fresh coat of paint in a relaxing color (I find the yellowness of the room hard to look at), and put cloud panels covering the lights.

This past June I had a medical crisis that reminded me that life was short. I have been having some problems with the electrical activity in my heart. This has only renewed my determination to make a difference in this world and in the lives of other sick children. Jacob's Healing Rooms has become my #BeforeIDie wish.

Your $1 could help me make this wish come true. It could bring a smile to a sick child's face, give hope for a brighter future, and inspire others to make a difference in this world. Your $1 could make these rooms amazing child-friendly places of healing. Your $1 could take the stress off of parents who are also worried about their child and struggling to distract them during the long treatment day.

This #GivingTuesday please think of Jacob's Healing Rooms and make a $1 donation to help make my wish to help other sick kids come true. And please share my story with as many others as possible. Together we can make a difference.

Here is the link to my Sick Kids Donation Webpage: Jacob's Healing Rooms Giving Tuesday Donation Link
You can follow my story on Facebook: Jacob's Healing Rooms Facebook Page
And I'm on Twitter: @KidWithCrohns
And on Instagram: @JacobsHealingRooms

The "Good", The "Bad" and The "Ugly" - Treating Crohn's Disease (Part 2)

For those who haven't read part 1 of my epic Crohn's treatment story, you can go back and read it be clicking HERE.  An extremely short recap: I had been through 8 months worth of different combined therapies and nothing had worked to control my Crohn's Disease.

Little did I know that my journey was really just beginning and it was going to take a turn for the nasty. In February 2013, I had my colectomy surgery (removal of the colon/large intestine/large bowel), donating the organ to research in hopes of finding a cure so others don't have to go experience my story for themselves. I'm planning on writing a completely separate post about the colectomy, so I won't say much about it here other than we were all hoping that this was where the story would end.

It was about a month after my colectomy when I knew that things weren't going well. I was still passing a lot of blood, having low energy problems and just feeling plain awful. At first the doctors were wondering if it was just that I was a slow healer from the surgery, so we gave it a bit of time. By July/August we knew that it wasn't just a problem of "not healing" that there was something else going on. Despite my earlier major blood loss from the bleeding, my body always kept up and my blood levels would stay normal (surprising my docs!). Now, my iron was basically 0 so I spent my summer getting weekly IV iron infusions. August rolled around, the doctors decided to go in and take a look at what was going on again, and discovered for the first time that I had inflammation in my stomach and MAJOR inflammation in the duodenum (the first area of the small intestine after the stomach). The doctors said that this type of damage could be seen with Celiac Disease, so I went on a strict (and horrible!) gluten-free diet for 6 months. We bought new toasters, learned new ways of cooking, and tried every type of gluten-free pizza out there without finding one we liked. Not once did we cheat on the diet. But the diet wasn't the problem.

After 6 long months gluten-free, the doctors went back to take another look inside and found that things were even worse than they had been. I could have told them that from how I was feeling! The doctors started me on Humira, another biologic medication designed to suppress the immune-system similar to Remicade that is injected every 4-12 weeks like Remicade. The Humira shots were painful, I'd rather have an injection of just about anything else. But if it controlled the symptoms it would have been worth it! Unfortunately the Humira left me looking like a car-accident victim. I had at one point over 80 bruises on my body. Here's my legs:

I also had sudden cell death on my arms that turned them brown: 

This was still nothing compared to what was to come. We decided that Humira was not the medication for me. 

I spent that summer (2014) as an in-patient at the hospital for the entire summer when my weight dropped way too low. I was put on TPN, which is a form of nutrition given through the IV. The doctors started talking the 's' word again, meaning more surgery. Instead, they decided to try Remicade again. 

From the start it didn't go well, I wonder if it were a sign of things to come. I had a rash, shortness of breath and fever during my first infusion. But we pushed ahead. After my initial 4 doses they found that I wasn't retaining any of the medication as I should be. So they increased the dosage. Then this happened:

At first the doctors thought I was breaking out in hives, the itch was incredible and wearing clothes was extremely uncomfortable. Benadryl didn't take the itch out of it. Benadryl cream burned to put on. As it developed it became clear that it wasn't hives. The hospital gave my mom cream to put on it, but everytime she touched me I would scream in pain and my skin would start bleeding. Eventually dermatologist confirmed that I was in the small percentage of Remicade users who developed psoriasis from the medication. The psoriasis covered 70% of my body and was the primary reason why I was hospitalized for a month. Ironically, Remicade is used to treat psoriasis!

The doctors decided that I needed both a treatment for my Crohn's Disease since we had now gone through everything that was typically used. I had to stop the methotrexate (a form of chemotherapy) injections because they made me violently sick. I couldn't take the Imuran because there was something to do with my genes or blood that said it wasn't a good choice for me. Stelara (ustekinumab) is also used in the treatment of psoriasis but is just now being investigated for its potential usefulness in treating IBD. Thankfully, because of the psoriasis, I didn't have to apply for special access to have this medication. Even more thankfully, because of the expense of this drug, the pharmaceutical company gives it to me for free since we would never be able to afford it. I started Stelara this past May. 

Stelara really upsets my stomach, but the injections are a lot better than the Humira injections. Unfortunately, I just recently had another set of scopes done to see why I can't eat, and they've found some new inflammation, so it might not be working to help control the disease. It has been wonderful for my psoriasis though!

I hope that my treatment story highlights the need for more research into treatments and a cure for this disease. Stelara is one of the last options remaining. Another newer medication on the market, Simponi, works similar to the Remicade and Humira, so the doctors feel that it likely won't be as effective for me since I've already tried two medications in that family. There needs to be more research into refractory kids like me. Living with Crohn's Disease is hard enough on a child, but to already run out of treatment options is scary. I will have this disease for the rest of my life. I'm 11 now. If I live until I celebrate my 100th birthday, that's 89 more years of living with this disease. I sure hope that in that time they can come up with more effective treatments so that I, and people like me, can have a break from the "roulette wheel of medicines".