The Notorious B.I.G. Walk Bloggers

When I woke up this morning my first thought was "Can I call in sick?". It had been pissing down all night, the forecast was shocking and the only thing darker than the clouds were the bags under my eyes after three hours of sleep. At that point I thought it would have been much better, and definitely far less painful, to die of a protracted vomiting fit than walk for 6km in the rain.

I'd signed up for the Big Walk a few months ago and figured it would be a leisurely stroll around the river on a lovely, sunny day. My only concerns, other than the whole "what if my broken body seizes half way around?", was if I'd get hat hair, but Perth's latest attempt at Spring has been rather dismal and hat hair was the least of my concerns.

Seeing as I was the one who organized all I figured I didn't have much of a choice. And honestly, a little bit of wind and rain is nothing when you think about what the kids in Princess Margaret Hospital have to go through. Plus I figured since 4yo Adam was coming up to Perth to join us and walk too, some crappy weather wasn't much of an excuse. Well that and I couldn't let a 4yo show me up.

So whilst it was a morning of rain, lightning, thunder, a few minutes of hail (which will henceforth be known as "those little icy bastards") it did lead itself to putting the Mighty Boosh's claim that it's impossible to be unhappy in a poncho to the test.

For part of the walk it appeared Tricky had thrown out the Mighty Boosh ideal and instead was channeling Laura Palmer's "wraaaaaapped in plaaaaastic". Top mother points to me for making it look like I was suffocating my child.

The team tshirts turned out to be quite disastrous. Although I got mine to work eventually, it wasn't after much swearing, hair pulling and threats to throw the printer out of the window (thanks, nameless brand for not putting full instructions on your damn packet). The only time I touch an iron in this house is to do iron on transfers - the frugal gal's answer to dress up parties and funky kids clothes - yet I still had trouble. Then after all that it was too bloody cold to even show them off. Damn you, Perth weather!

But on the upside there were long stretches of glorious sunshine (meaning a lovely jacket off, jacket on, jacket off, jacket on cycle), great company, a fabulous sausage sizzle, free rides for the kids and, at last count, $1330 in donations to our team.

Tricky on his first ferris wheel ride. He was fine, thanks to Adam

Thank you so much to all the walkers for joining in and braving the weather and to everyone who donated. You can see a list of the participants and our generous donors here - and if you're feeling sorry for us having to walk in the rain, you can still donate.

Big walk = big bucks... hopefully

Princess Margaret Hospital for Children means a lot to my family. My sister spent a lot of her life there, I had countless asthma admissions there, and Tricks has had two surgeries, asthma and allergy admissions there. If it wasn't for the fact that it was a public hospital I reckon we'd be getting a bulk discount right about now.

When my friend's boy was diagnosed with cancer this year I felt impotent. The whole wanting to help but not knowing what to do thing is a bitch of a feeling. So, I figured throwing money at the problem might help somewhat. I could have done a naughty cake sale to raise the cashola, but decided that walking 6km would have to do.

It remains to be seen whether I'll be able to walk 6km non stop what with the whole chronic pain thing. But I figure if kids like Adam can put up with chemo then I can pop a couple of painkillers, get off my fat arse and push through the pain. I might end up on the couch for a week but screw it, I'm gonna do it.

I'm also doing another fun run a few weeks later. Because I'm a dickhead. But if someone could loan me a wheelchair for December, that would be ace.

If you feel like helping the sick kids then you can donate here. If you're going to be in Perth on Sunday the 4th of November and feel like joining in on the action (HAH! Action? Please, it's me we're talking about, this will be a casual stroll!) then join the group here - the password to join is Glowglow. There's a few other bloggers/tweeps already involved but we'd love some more - that way I can hide amongst the group so no one sees me hobbling along. 

We'd like to raise $500 (well actually we'd like to raise a shed load more than that, but we're being realistic) and we're almost half way there already.

On the day you can follow my slow deterioration by checking out the #BigWalkBloggers hashag and then join in the linky that will be hosted here after the event.

Will you support us? I will give you endless love and devotion. 

EDIT: If you join the group it doesn't actually let me know your contact details! Please email me glowless@wheresmyglow.com and I will let you know where we're all meeting on the day! It's also not letting me know the contact details of people donating so I'm unable to thank everyone individually. But I can say now, watching the tally go up has me crying happy tears. Thank you so much x

Adam's Story - Children's Vision Day

It's two years this week since we found out Tricky had a skull deformity that would require surgery. As awful as it is to go through something like that, the people that I've met because of it, more often than not, turn out to be truly amazing.

I was lucky enough to be introduced to Jennie by the staff at Princess Margaret Hospital. They pair up parents of newly diagnosed kids with those who have gone through it before, and her son, Adam, had walked (well, crawled - they were babies after all) the same path. Instantly we were on the same team, bonded by this intense, shared experience. And as time passed we moved from being fellow cranio mamas to actual friends.

Now you’re probably wondering why I’m blabbing on about Craniosynostosis when the title of this post has Children’s Vision Day in it. Well Adam, who is now three years old, is going through another rough patch and Jennie graciously let me interview her in the hopes that together we can raise awareness. I've never actually interviewed someone before, so I went all serious, pretended I was Jana Wendt and just wendt for it:

Can you tell us the name of Adam’s condition?
Adam has a condition known as bilateral retinoblastoma. 

What exactly is retinoblastoma and how common is it?
Retinoblastoma is a cancer of the retina, the inside lining of your eyeball. Some children only have the tumours in one eye, Adam was unlucky and has it in both eyes (which is where the ‘bilateral’ bit comes in).

I’ve never actually heard of retinoblastoma before, how common is it?
It is quite rare, it accounts for only 2% of all childhood cancers, and I have been told there are only about 3 cases a year in WA.

What signs had you noticed that lead you to think something might be wrong and seek medical advice? 
I had noticed a strange reflection in one of Adam's eyes (leukocoria). His pupil looked white in certain lights and at certain angles. It didn't seem to be causing him any problems, he wasn't bumping into things or complaining of not being able to see. It's strange the way you can come up with reasons for things, I was thinking that it was just something that I hadn't noticed, that maybe it was because he was now a bit taller and I was seeing his eye at a different angle. After maybe a couple of weeks I started to think that really there was something not quite right, that it really shouldn't look like that, but I didn't think anything was seriously wrong.

Adam's left eye showing leukocoria

I made an appointment for both of my kids to have an eye test at the optometrist. My daughter went first and her eyes were good. Then it was Adam's turn. The optometrist asked if I had any concerns and I told her about the white reflection. She first tested his vision with both eyes and it was good, then she covered his "bad" eye and again his vision was good, then she covered his "good" eye and my heart nearly broke.

He started moving his head around, trying to see from his good eye and it was so obvious that he was blind in the bad eye. How could I not have realised? My heart broke for my little boy and I felt like absolutely the worst mother in the world, how could I not have known that he was blind in one eye?

She then looked in his eye and told me that she thought he had a cataract. This would require surgery to remove the lens of his eye, which could then be replaced with an artificial lens and that he would get his vision back. She gave me a referral to a paediatric ophthalmologist. I went home and rang my husband (who was away travelling for work) and burst into tears, telling him that Adam was blind and would require surgery on his eye. After I had calmed down a little bit, done some Googling, I told a few friends, and I remember saying "at least it's not cancer". As traumatic as him having a cataract would have been, I wish that is all it was!

I rang to make an appointment to see the ophthalmologist and then next available appointment was in about 2 months time. I really didn't think I could wait that long and I started getting quite upset on the phone, so the receptionist started looking for another appointment. Luckily she found a cancellation for 2 days time, so I grabbed it!

By this time my husband was home, and so he came to the appointment too. First the ophthalmologist repeated the vision test that the optometrist had done. Then he put dilating drops in Adam's eyes and after they’d taken effect he looked in to his eye.

I will never forget that moment. He said "I'm afraid it's not good news. It's a tumour". 

Can you describe how you felt when he said that? It must have been such a shock.
I'm almost sure the world stopped turning for that briefest of moments. Yes, shock is probably the only way to describe it. I didn't quite get it, I had to say to the ophthalmologist "you mean it's cancer?" and he said yes.

The fear I felt was enormous and I started thinking what will happen to him? How will he cope? Will I lose my little boy?

I imagine with a cancer diagnosis, everything happens very fast. What treatment has Adam had so far?
The day after the diagnosis Adam was sent to PMH to have a CT scan and then an MRI and a really thorough examination of both eyes under general anaesthetic. These tests showed that there were tumours in both eyes, but that they appeared (thankfully) to be confined to the eyes only - there is a risk with this type of cancer that it can "escape" via the optic nerve to the brain. The tumours in his left eye were too large to be treated and the only option was for them to remove his eye. Thankfully the tumours in the right eye were considered small enough to be able to treat with laser surgery and chemotherapy.

The following week Adam was admitted and his eye was removed (enucleation) in one operation and a few days later another operation to have some laser surgery and to have chemotherapy port put in.

So far he has had two rounds of chemotherapy and we are expecting that he will be having chemo for at least another 6 months. On top of this, every 6 weeks or so he has to have another general anaesthetic and either more laser surgery, an MRI or just an examination.

That is some intense treatment for such a little fella! How has Adam coped?
He’s amazing! People talk about the resilience of children, and it is so true! It has made me so much more aware of the emotion and “baggage” that we attach to illness. Adam has none of the associations that we as adults attach to cancer, he knows that his eye was sick and that he had to have an operation and he knows all about his chemotherapy port - his "button", but he doesn't have the dread and fear that we as adults have.

Adam showing off his temporary prosthesis

I can’t imagine how hard it would be for you, how are you dealing with the stress?
With wine and chocolate!

But really just trying to live by all those clichés that you hear - one day at a time, make the most of every moment, be happy now because you don't know what's around the corner.

If you could tell parents one thing, what would it be?
Again, all the usual clichés - treasure each moment with your children and family because you never know when it will be your last. Get your childrens eyes tested. Trust your instincts as a parent. If you think something is not right, follow it up.

Thank you so much for sharing your and Adam's story, Jennie, and best of luck to Adam for his operation today to have his new prosthesis fitted!

If you would like to donate to childhood cancer research at PMH there are a number of ways you can do this:

1. Support the Telethon Adventurers – their most recent adventure to raise money involved climbing Grand Paradiso in Italy with a giant poster of all the kids currently being cared for in the cancer ward of PMH (Adam’s picture is bottom right).
   
   
   
   
2. Support the Perth Bloggers and Tweeters Big Walk team. We’re all walking for different reasons but with the same goal – to raise $500 for PMH. If you’re in Perth, join our team (the password is Glowglow) and if you don’t want stroll around the river with us you can just donate.
   
   
3. Buy Lexie’s Look & Cook Book - all proceeds raised from the sale of this book go towards purchasing non-invasive eye testing equipment for PMH to make the process of diagnosis and treatment less painful and scary.

Slipping Through The Cracks

Yesterday was one of those days. You know the ones. Everything goes wrong.

By 10am I'd already broken a mug, stepped on Lego and lost the remote control amongst a sea of toys.

By 12pm I'd missed an important phone call, slipped in the shower, burned Tricky's lunch, thrown it out and burned the second lot too.

At 2pm we headed to the doctors for Tricky's one year immunizations.

Why do doctors surgeries insist on packing patients in to ten minute slots then spending half an hour with each person? Keeping a toddler amused for an hour in a place with no toys and three torn books is a particularly sadistic form of torture.

So we finally get in there to see the amazing doctor, Dr B, who first picked up Tricky's sagittal craniosynostosis. It was like a little reunion of sorts with lots of head feeling and progress updates. All good.

I decided to get the whooping cough booster for myself so the doctor flicked over to my file on the computer and a big alert popped up on the screen.

"Abnormal Pap Test Result 2009"

My breathe caught in my throat and my heart started racing. Or maybe it stopped, I'm not sure.

2009? TWO YEARS AGO? How come I'm only being told now?

The doctor searched through the entries on the computer, showing them all to me. And there it was. Abnormal result.

In early 2009 I was seeing one doctor, Dr H, weekly for allergy desensitization injections. Under one of those visits he has typed "discussed abnormal pap result".

Ahh, no. That was never discussed. I'm pretty bloody sure I would have remembered someone saying that. I mean, wouldn't you?

I've also been back since then for two pregnancies - one of which resulted in Tricky, a flu shot, to get my stitches checked after Tricks was born and when I had gastro. NOTHING was ever mentioned. Not once.

So here I am, a mere three months away from getting that lovely letter that says it's time for a Pap smear, to be told the last one, TWO WHOLE FUCKING YEARS AGO, was abnormal.

How does that happen? How can these things slip through the cracks?

I'm not panicking, well, not properly. I'm pretty sure I had an extra Pap Test when I had my first Obstetrician appointment and I'm going to assume that since I saw him so often during my pregnancy that he would have mentioned something. He would have... wouldn't he?

But there is that corner of my mind that is whispering dark thoughts to me when it's quiet. It's the same part that jumps to conclusions; the same part that thinks maybe the OB assumed I'd already been told; the same part that thinks I'm a shit magnet when it comes to incompetent doctors.