Singing in the Car

I think adults have a lot to learn from children.

I also think that if more adults were paying attention, the world would be a lot better place.

My most recent education has come from my young son, who has already taught us so much so far.

He has Juvenile Arthritis (JIA); he was diagnosed as a baby and has known no other way of life.

After years of constant pain, damage and disability, he has been accepted into a new clinical trial for the biologic known as Etanercept (Enbrel). It has been a loooooong time coming, and still cannot come soon enough for our liking. There’s only so much pain a parent can bear seeing their children suffer.

Due to very active and aggressive arthritis in his little neck, Master B has been unable to lift or turn his head for 6 months (he turns his entire body- try it, it's exhausting), both wrists have been swollen and unusable at times for >13 months (makes dressing, feeding, and toileting fun), his hip and shoulder are also giving him grief (but we've been able to keep him out of a wheelchair!), his jaw has made it difficult for him to open his mouth to eat at times (liquid diet when that happens, and not even the one that consoles adults from time to time if you know what I mean), and most recently his elbow has swollen up to the size of a tennis ball- he simply cannot straighten his arm. Oh, and since he stacked his scooter last week he has also flared-up his knee (along with a ripper of a graze). So you can see he has been struggling. As have we all.

He was in hospital three times last year with another visit on the cards if he did not get accepted into this study. He has "officially failed" all the medication he has been taking for the past, gosh, 7 years next week! That's a lot for a little lad to take, considering he’s only just turned 8.

Anyway, late in April our brave boy endured a 12 hour day, including 4+ hours travelling and 4 hours at the Children’s Hospital for blood tests, urine samples, and physical examinations, for the Screening portion of the trial. He could only begin the 2 year study if he tested negative to Tuberculosis (Tb) as biologics have been known to stir that dragon if lying dormant.

In May we did it all again for the Baseline visit, which came with the added bonus of his first round of Enbrel injections- to be administered once a week for 96 weeks. It was another marathon effort - 9.5 hours all told to travel and do even more paperwork to get things going (he is child #21 of 100 worldwide to start the study, the first in NSW and second in Australia).

While he wasn't overly fond of the blood tests he had to have again, at least it was only 2 tubes this time, not 6. And unlike last time where he suffered a little ‘performance anxiety’, he was both keen and capable of 'peeing in a cup' for the urinalysis side of things - giggling like a goblin as I tried to safely remove my hand holding the specimen jar out of the line of, um, fire ("Thanks son, we've got enough now. That's it, you can stop. Hold up, please!!!")

He did hide behind the door while I was preparing the Enbrel but was coaxed out and chose to have the injection in his arm. For those who don't know, this drug comes in 2 separate components- first you have to fit a needle to a syringe of sterile water and inject that into a vial of powder, then swirl it together carefully to mix (not shaken but stirred - James Bond would not be impressed). Then you have to fit another needle to another syringe and draw up the prescribed amount of mixed medication ready to inject subcutaneously or intra-muscularly to be more precise. Since I have been doing Methotrexate (Mtx- a nasty chemo drug) for years now the nurse thought I was totally capable of giving the first shot myself; she even said I flicked the bubbles out like a professional, LOL. Sadly my Beloved is needle-phobic, but does a great job of cuddling the lad.

Well I have to tell you, Master B said he felt the Enbrel was working that very first night! It was obviously kicking into his Temporomandibular joints (TMJs) as his little jaws did not stop flapping the entire next day, LOL. And he was up skipping (would you believe) at 9.30 Wednesday night. He beat his best mate in a running race at school on Thursday. Says he feels like Superboy!

Anyway, when he came sleepwalking into bed with me last night (luckily my Beloved was on night shift or things would've been a tad too cosy for comfort) I thought he may have been suffering a little (has happened before, his subconscious brings him to me right before he pukes or cries some nights. He's also excellent at taking himself to the loo while asleep, yay). But he awoke this morning, and aside from being surprised to find himself in my bed, he said he has NO PAIN AT ALL- for the fourth day in a row!

We can't remember that ever happening before.

While he now faces two injections a week, along with monthly blood tests and all that goes with it, our dearest wish is that this drug does the trick and our brave little boy can finally begin to enjoy a carefree & pain-free childhood, like he deserves. Doesn’t every child?

We’re back to the hospital again this week for the next phase of the trial.

And you know, on top of all this, he just keeps singing in the car on the way home!

How many adults do you know who would do that?

Jx
©2010