Two Years

The kid skipped down the hospital corridor and he was smiling.

"I'm happy, I'm healthy, I'm going shopping!"

We passed a doctor who smiled.  He knew.

Signed ourselves out of hospital, walked past the Lego display and into a waiting taxi. 

Our first stop was for some new beads for Mr C's Bravery Beads Necklace, one for blood tests, one for a hospital visit and one for some good news. The necklace is growing, a visual reminder of his journey over the past two years.

We found some Lego and two XBox 360 games that he had wanted, so he was very happy. Not a care in the world.  How it should be for an 11 year old kid.

Two years after I first noticed something was not right, Mr C (aged 11) is officially in remission from Crohn's Disease. It has taken a lot of tests, procedures, blood drawers, MRI's, iron infusions, tears, a liquid diet, a low residue diet, a normal diet and medication every day to bring him back, and it's an amazing feeling.

He still has issues with aching joints and blurry vision, and his skin doesn't tolerate the sun, but everything else is clear and he has energy!

He is a strong little guy, so accepting of what has to happen and at times when I've been the one struggling, he just gets on with it and I'm reminded that we are in this together.

I've looked at his little body, and wondered what was going on inside him that shouldn't be.  I've wished that I didn't have to give him the drugs every night but I know that if I don't, he will get sick again.

That is a really difficult cross to bear but one which I own.

I know things may change and he still has puberty to navigate, but for now, we are blessed and fortunate and so grateful to be where we are.

Life is good.

Bravery Beads

Beautiful beads.

Swirls, colours and patterns.  Each one representing my son's journey through Crohn's Disease.  A silver bead for every iron infusion, orange and red swirls for blood tests and a green bead for each invasive procedure....colonoscopy, endoscopy, MRI, capsule scope.......an endless list.

These are my son's Bravery Beads.  A visual history of his story through treatment, and a unique way to remember what he has to go through.  I think this is a very personal thing for him, as he has told me that the beads show how brave he is during his hospital visits, and how they make him feel strong.

The Royal Children's Hospital in Brisbane have a Bravery Beads programme, but it is only being applied in three departments at the moment - Oncology, Respiratory and Metabolic Medicine. 

It is hoped the programme will be offered in other areas including Gastroenterology, which is our stomping ground, and I really feel that it should be because Crohn's Disease is a chronic illness with no cure.  It is stressful and confusing and annoying and life long.

Until then, we will keep collecting the beads and his story will grow through colours and swirls and love.

May is Crohn's and Colitis Awareness Month in Australia.

Crohn's and Colitis Awareness Month

You may not know that May is Crohn's and Colitis Awareness Month. Specifically today, May 19, it is World IBD Day. That's Inflammatory Bowel Disease.

Up until last August, I didn't know anything about Crohn's Disease.  I had three healthy children, or so I thought, and I supported charities such as the Muscular Dystrophy Association and SANDS which I still do because I have a personal connection to them.

When my little boy was diagnosed with Crohn's Disease last year, he was 9 years old. A simple blood test to check his iron levels led to four trips to Brisbane and lots of procedures and tests at the Royal Childrens's Hospital. Questions, uncertainty, fear and sadness took over as we realised that our child was sick. Where the hell did this come from?

I mothered my kids the same, fed them the same foods, nurtured them all exactly the same, yet my middle child had this thing called Crohn's Disease?  An inflammatory bowel disease. Not a boutique disease that people are happy to talk about, rather something that is spoken in hushed tones because it is to do with digestion, intestines, poo, blood, weight loss, cramps and dodgy toilet habits.

And my reference above to boutique diseases, is written with the utmost of respect, what I am saying is that Inflammatory Bowel Disease is not one that has a high media presence.......therefore this month is so important to spread Awareness and understanding about Crohn's Disease and Ulcerative Colitis.

There is no cure.  They are chronic, inflammatory conditions that are characterised by periods of  good health (remission) and flare ups, and can differ from person to person - there are so many variables.

So how are we doing?  After the initial shock, I decided to find out as much as I could about what we were dealing with, and to work towards the goal of keeping my son as healthy as possible. There are still so many unanswered questions and I suppose with time, they will be answered.  I worry all the time.....about the medication I am giving him....what it is actually doing to him besides keeping the inflammation away from his little body.

I worry that he is not growing, that he is pale, that his body aches and he complains about his joints being sore...his legs, behind his knees, his wrists.  I worry that he gets sunburnt easily and gets headaches because of the medication. I think about his immune system that is now compromised, and I try to keep him away from coughs and germs, but it's not easy.  I look at him sometimes and wonder was it anything I did (no)...

If he is tired or takes too long in the toilet, I worry.....it's a constant thing. It's called being a Mother.

However, there are some things that I do know......

* my son is the strongest, bravest kid who just accepts this situation
* Crohn's Disease does not define him.  He is a footballer, an ace Lego builder and is quite handy on the Ipod (minecraft and Star Wars are his thing)
* his family adore him
* he has tonnes of friends
* he's hilarious and cracks me up
* knowledge is power
* things could be worse
* support is precious
* we all have good days and bad
* a good, balanced diet is a given
* medication is a necessary evil
* I cry easily and often

I'm looking into alternative remedies to help keep my little guy healthy, and to ensure the best chance of a prolonged remission. It doesn't take away the need for medication, but rather work side by side..it can't hurt can it?

And the best, most valuable thing of all that I have discovered is the support and kindness from the IBD community. From this forum to a couple of Facebook groups who helped me today to some special people who are living with Crohn's Disease or Ulcerative Colitis whether it be themselves or their child...Jake, Stacey, Annie, Karen and Stephanie.

Thank you.

Debrief

 

So many things swirling around in my mind.

So much happening, my life is never truly dull!  We are this close to moving into The Money Pit!

Just waiting on that final piece of paper that says "Farmers Wifey, the four years you have lived in a shed, and coped with this neverending bad camping trip, is finally coming to an end"!

When I have that official letter in my hand, I will know that we have done it!  Our dream house will be finished!  I can unpack!  I can decorate!  I can have a bath!

But the house hasn't been on my mind this week.  Mr C (aged 9) and I have spent three days in Brisbane at the Royal Childrens Hospital.  You may remember that he has recently been diagnosed with Crohn's Disease.

He had two procedures scheduled, the first being an iron infusion, and the second, a pillcam endoscopy, where a small camera is placed, and travels through his body recording the images. 

We need to see if the 7 week liquid diet adequately rested his bowel enough to make a difference to the little ulcers throughout his small bowel.

Yesterday was very traumatic.  The doctor who "tried" to put the IV in his arm, needle pricked his artery, which resulted in alot of tears (me) screaming (Mr C) and too much blood running down his arm.

His arm went white and stiff, and his fingers were numb.  It was not right.  Mr C was in so much pain, and my heart just about broke in two.

In the end, the IV had to come out, and Dr Nick, who is awesome by the way, successfully (and painlessly) put the IV in Mr C's hand and all was well. 

I hated this.  I hated seeing my son in pain, and knowing that he trusts me completely......trusts that I make the right decisions for him.  If I could trade places with him, I would in a heartbeat.

Crohn's Sucks.