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.

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.

Help a Heart

Yesterday I was contacted by Julie from Natural Transition, asking me if I could help her out by sharing a story will you.

You might remember I wrote about her awesome stuff a while back when she sponsored me to go to Blogopolis. Don't remember? It's OK, you can read now. Ima wait right here for you.

You back? Good, let's continue. Last week Julie posted about a young mum, Jane, who needs our help. Her five year old daughter, Jasmine, needs life saving heart surgery... surgery that has been cancelled twice already and is putting extra emotional and financial stress on the family.

Heart conditions are very close to my, err, heart, so I jumped at the chance to help. My sister was born with congenital heart disease and thirty years later my Dad developed heart disease after contracting a virus. So whilst I don't know what it's like to experience heart disease, I know just how devastating it can be to live through it as a family member suffers.

If you click on the image below you can read more about Jane and Jasmine and how their good friend Rosie is trying to raise some money to support them through their journey.

If you'd like to leave a message of support, that will be printed out and sent to Jane, you can do so in the comments section on the post at Natural Transition or below.

We need your help to spread the message, so if you  have a moment, show a young mum the power of social media and share this on Twitter and Facebook.

Go on, you know you want to - you'll feel good about yourself!

International Women's Day - Singular Insanity

Tomorrow marks the 100th anniversary of International Women’s Day.

Tomorrow I honour the work of the Suffragettes, who rallied for my rights so many years ago. I celebrate the success of women across the globe, and reflect on the inequities still to be addressed.

One of the areas of women’s rights that still requires attention is family violence. Whilst men are not immune from being abused, in the vast majority of cases it is women and children affected.

I have spoken before about physical abuse. But for those who make it out, the bruises do fade. Bones eventually heal. But what about the psychological abuse? The fear. The mistrust. The self-doubt. You can’t point to it and say “it hurts”. A doctor can’t put it in a cast and tell you to rest. The healing can only be done with therapy and time. And sometimes, even after all that, we are still scarred. It can be one of the hardest wounds to heal.

I’d like you all to meet Dorothy. You know what I like about her? She’s not a victim. She’s a survivor. Some people might not really see much difference between the two words but to me they are as different as chalk and cheese;

Apples and oranges;

Summer and winter;

Letting someone own you versus moving on, fighting back, recovering and flipping the bird.

Dorothy blogs at Singular Insanity where she writes about her recovery from narcissistic abuse. By her own admission, her blog is graphic and at times disturbing. But you know what? Abuse is graphic and disturbing.

So tomorrow, I honour the women around the world like Dorothy who are survivors. The ones who are brave enough to speak out, and the ones who are suffering in silence. I hope you will too.

Posted with permission

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Meet Glowless at the Aussie Bloggers Conference thanks to

HealthyChart and Baby Goes Retro and Simply Colors

7 Inches...

When I decided to call this post "7 inches" I put it to Twitter to guess what I was talking about and the guesses, in order of popularity were heels, penises, salami, hair and a roll of cookie dough. One of those is correct.

Meet Damien. He's my beautiful BFF Bec's hunk-o'-spunk husband.

Nawww aren't they cute together?!

In true Aussie Bogan style, he gets called Damo a lot.

After a few drinks, it becomes Daayyyymoohhhhh and he looks like this:

Rockin' out, probably to Metallica

His most prominant feature, other than his baby blues, is his beard. His face fuzz. His chin warmer. Bec has been known to call it the 'Lady Garden' of his face, though it's not so much 'Map of Tazzie' as 'Map of Portugal'.

Image credit to the one and only Map Guy

I've known Damien for about eight years (I've known Bec since year one), and have never ever seen his chin. It has always been covered in beardy goodness.

It is almost 7 inches long and he has resisted Bec's nagging encouragement to shave it off... until now.

He's going to be Brave and Shave for a Cure as part of the Leukaemia foundation's World's Greatest Shave!

If you'd like to support Leukaemia research and see the naked chin of Damo, then you can sponsor him by clicking the picture below... if Damo reaches his goal of $200 by the 12th of March, then all his naked-chin-glory will be displayed here on Where's My Glow? for you to see!

Too cool for school

Click here to check out the Caroline's Angels giveaway
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Meet Glowless at the Aussie Bloggers Conference thanks to

HealthyChart and Baby Goes Retro and Simply Colors

Strength in Numbers

By now you will have heard that the Purple House at Random Ramblings of  SAHM has been rocked to it's foundations with the sad passing of Lori's husband, Tony.

Today I am so proud of the Mummy Blogging community. They have come together to support one of their own. Twitter has been swamped with words of love and support so much so that #prayingfortony was trending in Australia.

They have organized meals, washing, ironing and cleaning for Lori, so that she can concentrate on healing and focus on her two small children, Chop & Bump, who now don't have a Daddy.

They have dug deep and raised almost $3000 to help lessen the financial burden a sudden death in the family creates. 

You can donate securely through PayPal using this widget

Today I have seen both the extremely ugly side of life, in the taking of such a young life; and the astounding beauty in it, with the warmth and compassion shown by the community.
 

For once Casa de Glowless has a glow. The glow of a candle burning brightly, lighting Tony's way for the next leg of his journey.

Rest In Peace, Tony
1977 - 2011

Please Support Lori @ RRSAHM

Lori, the amazing woman behind Random Ramblings of a Stay At Home Mum needs our help.

She has asked for your prayers and thoughts for her husband, Tony. He is in intensive care, fighting for his life.

Tony is the major breadwinner in their family... and the stress of finding money to put food on the table and pay the bills is something she really doesn't need right now... it's also one thing we can help with.

Money doesn't fix things. It doesn't even come close. But it can be one less thing she has to worry about.

Emma from Mind Your Mum (Lori's long time BFF) and I would like to ask you to please spare some change?

This widget has now been removedThank you to all who contributed over $4000 was raisedto support Lori and her children as Tony sadly passed away a few days later

(You can put this widget on your own blog too - see where it says "Add to Site")

I'd like to point out that Lori is unaware of this as yet - she has not asked for money, just your prayers.

Thank you so much for supporting Lori, Tony, Chop & Bump.