Read on before you have a heart attack...

Don't stress. Its just that time of year again when we see funky chins on our bus stops and television adverts. These funky chins tell us to "Be brave and shave". This campaign by the Leukaemia Foundation has been happening as long as I can remember and they only seem to be picking up intensity each and every year.

Over the years various people have shaved and coloured their hair and we have supported them along the way. Its not until this year, that my very brave, big sister told me she was going to shave her head that I stopped and thought more about it.

As much as we don't like to think we're the type of person who judges a book by its cover the truth is, we all do it. Its instinctual and primal and has helped us survive a long time. They say the first 8 seconds of seeing someone your brain is consumed with visual input. It is not until you loose your hair do you realise that we are defined by our looks, and more specifically our hair.

I have been blonde for so long, that when I did change to brunette for 12 months, I startled every time I saw myself in the mirror. So my brain never adjusted to the change as I see myself as a blonde. I can't imagine for the life of me, what it would be like to loose that self-defining feature all together.

Choosing to loose it is one thing, not having a choice is another. Loosing your hair when undergoing chemotherapy suddenly defines you as a "cancer patient". One that stands out like a sore thumb. It is just one major aspect of the body image issues this group of people have. I have known people to refuse treatment purely because they didn't want to loose their hair. At the time I thought that was crazy, but if it was me, I'm not sure how I would really feel. I guess you can never know until you go through it.

So, for a woman, to shave your head is quite a profound act. One that shows solidarity to all those others out there undergoing treatment, be they blood cancers or not. It is even more profound to do it with your young, impressionable girls watching. Nicole, I hope they look back at this moment in their lives and think "Mum was so brave" and, more importantly "I am not defined by how I look, but by who I am". That is the best gift we can give to anyone, let alone our children.

As you have been wondering about what you'll look like afterwards, here is a creative depiction for you! I think its a pretty amazing look!

Every little bit helps, so any small amount of money adds and makes a big difference!

Thanks to Nicole for being so brave, and shaving! Enjoy your new look!

Peace

xx

The first day of Spring

Today is the first day of Spring. 

I have know this all day. 

But it was not until this evening that I associated the first day of Spring with the 1st of September. On this day in 2010 (four years ago) our lives were flipped upside down as I was diagnosed with Leukaemia. I'm sure by now you all know the storey of how this has affected our lives, so I won't go into details about the past. 

Currently things are going really well for us. I am back at work part-time hoping to go full-time again soon. I have started surfing again and hitting the golf balls really well. Over the last couple of months I have been able to drop a few more medications, lift some heavier weights and I have been told that I am going to be a Dad! Thats right, we're having a baby!

I can't stop smiling because I didn't think that I was actually going to be alive to experience such a moment. On more than one occasion we have had our dreams of having a family shattered to pieces. I have always wanted to have a family of my own, even when Kell and I started dating at the age of 16. Mostly because I knew that she was the one I wanted to be with forever and that I have two of the best people in the world as my parents to aspire to. I know how much fun Dad had with me when I was little! 

I can't wait to teach our little Nemo to surf, ride BMX, and just be amazing. I am really hoping that our little Nemo can be half as amazing as its Mother. 

As you may or may not know, the chances of being fertile after chemotherapy are very low. But with the help of whole body radiation, it is almost a certainty that you will be infertile. So luckily I was able to "make a deposit" at the "bank" before commencing my treatment. When we got married, a lot of very special people gave us money as a Wedding gift. We would like to thank you very much for helping us afford to have our little Nemo. You have given us the best Wedding present ever, the gift of new life!

At the end of this week I will be having surgery on my eye. At the moment I cannot see a thing out of my right eye. So I am really looking forward to ‘seeing’ the results (get it!!). This is done via a 5 point key-hole surgery around my eye but is fairly simple. The surgery in itself I am not too worried about, but I am not looking forward to the recovery as I will have to be facing down for roughly 2 weeks. I am also not looking forward to feeling like I will have eyelashes in my eye as there will be dissolving stitches on my eyeball. Part of the surgery involves putting oil inside my eye to prevent another bleed. This means that although I will have sight back, it will be like looking through water until I have a second surgery in 12 months time to have the oil drained. 

Thank you for the lovely well wishes about our announcement! 

On a small side note, I would just like to welcome to the family Imogen and Ivy:)

Peace 

Shaggy 

xx

  

Everyday Hero

We have been on an adventure!

All the way to Western Australia and back again! What an amazing trip it was! 

Meet Mr Steve Toms, Shane's incredibly generous donor! Steve has decided to stand tall as a proud donor rather than remain anonymous. I applaud your decision Steve!

We met Steve on Thursday the 17th July, 2014, exactly 18 months to the day since Shane's transplant! Not that we planned it that way! We didn't even realise the significance of the date until a week later! But it really was quite the coincidence! 

We met Steve in the hotel foyer that afternoon then went out to dinner. We had no idea about how Steve looked, but knew he would recognise us from the photos in this blog. In our heads we had different opinions about what he would look like, and hilariously, as we walked into the foyer, a man fitting Shane's exact mental description walked in. There was an awkward moment when Shane says for certain "this is him here" only to see the man give us a funny look and turn the corner to walk away! Just at that moment, the real Steve rocked up and introduced himself. 

We spent a fair bit of time with Steve over our week long holiday. We even did a ghost tour of the Fremantle prison together! We really enjoyed this time together getting to know the man who saved Shane's life. Steve really is a hero, but also, just a regular guy. Anyone could have had this honour, but like the lotto, "you have to be in it to win it"! Steve had signed up the the Bone Marrow Registry, and had the opportunity to become a life saver. What a legend! 

This is what you get from the Bone Marrow Registry after donating stem cells. Steve says donating his cells "was the greatest thing he has ever done". I can only imagine how that would feel. 

As a small thank you (because nothing would ever feel like its enough), we bought Steve a watch to symbolise 'time', a gift that he himself gave Shane. 

We spent the rest of our time in Perth being tourists and visiting friends. What a lovely place it is! The Swan river is so beautiful and the same goes for Kings Gardens. We spent a few days in Margaret River and loved the combination of cold weather and comfort food! We successfully ate our way around town! It was delicious!

But sadly, all good things do come to an end, especially holidays! We were very lucky to have had the opportunity to meet with Steve, an opportunity that few transplant recipients have. We are incredibly grateful for the experience and for Steve and his heroic actions. Actions that have allowed us to move forwards in our lives. 

Thanks again. For everything. 

Peace. 

xx

     

Becoming a Donor

It has been such an amazing experience communicating with Shane's Donor. I have asked him to share his experience, so that I can share it with you. You all know that Shane wouldn't be here without the generosity of his Donor, and I call upon all of you to sign up to the Australian Bone Marrow Donor Registry, if possible, so that you may be able to help others like Shane. 

It is a very simple process to sign up, and can be done at any Red Cross Blood Donor Centre. There are a few extra questions and blood test and you're done. 

The Donor registry needs in particular young males (under 45 years), who are of ethnic or mixed ethnicity background. But they will happily accept anyone who is willing to help! 

Did you know, that some countries have an "opt out" system when it comes to being an organ donor? Our system is an "opt in" system. The countries that apply the "opt out" are by far the biggest donors for the rest of the world! 

"It was only a matter of months after I registered on ABMDR that I received a call to say that I had been matched and asked if I would come in for further testing. I agreed and made an appointment. I gave a blood sample and filled out a questionnaire and was given a rundown of the procedure, as well as lots of printed material to take home. This was when I was made aware that, if I agreed to be the donor, once treatment had commenced, I could not change my mind as to do so would certainly cause the demise of the recipient. I asked "What can you tell me about the recipient?" and was told they could not disclose anything. I said " I don't want a name but can you tell me male or female, what disease they are fighting, anything?" They  relented and I was told the recipient is a 29 year old male from Qld with leukaemia. That bit of information gave me a reality slap. Here is a young man in the same position that my friend Jason had been in 6 months earlier. Same age, same disease.
 
I agreed to be the donor and headed home with my printed material to wait for the call to begin the process. Days turned to weeks and weeks turned to months and still no call. What had become of this young man? I had no idea. Finally I received a call from the registry to say that I had been on stand-by for 3 months and was now released from previous arrangements and returned to donor register. Again I tried for information on the recipient's wellbeing and again told they could not disclose anything. While I wanted to believe he was in remission, I knew there was a real chance that he had lost his fight. With these mixed feelings of not knowing, but knowing I had done all I could, I went back to my life.
 
Several months later, I was working at a minesite in Central Western Australia when I received an e-mail from ABMDR asking me to call. I rang and was asked if I was still available to be a donor. "Absolutely I am" I replied. I was then told my previous recipient had been in remission and now required a transplant. I arranged an appointment for when I returned home in a few days. Again the blood sample was taken and the obligatory questionnaire filled and again the procedure explained. This time, after reading my  printed material, I had some questions. I knew I had to have a series of injections for a week and the first would be given at the hospital. My question was would I have to return to Perth for the other injections or could I have them at Fremantle where I live? I was not ready for the answer. They told me that I would be giving them to myself and they would show me how when they do the first at the hospital. I felt this was an appropriate time to tell them that I could not possibly stick a needle into myself. No amount of coercion could convince me otherwise and they then asked if I had a friend who would be willing to help. Luckily I have a good friend who lives close by and I'm sure she would take great delight in poking me with sharp objects.
 
The date was set for the hospital appointment and I returned to work in the interim. The company I worked for were very accommodating in allowing me to fly home early and to have two weeks off, one for the series of injections and a week to recover. My friend, Reimi, and I arrived at the Red Cross Blood Bank (Home of the ABMDR) and were then taken to the hospital next door and through to a small ward. First up was a short video explaining the method of subcutaneous injection, proper hygiene, avoiding bruising and sharps disposal. It was then that Reimi was asked if she would be ok administering the injections. With a glint in her eye and an evil smile she replied "Yep." She then went on to say that when her father was battling cancer she would, at times, be responsible for giving him injections. I was then instructed to sit on the edge of the bed and lift my shirt. An alcohol swab wiped the area to receive the needle, and with a roll of skin pinched between fore finger and thumb, the needle was expelled of any air, then inserted to a depth of 20mm and the contents discharged slowly before the needle was removed and the area rubbed to spread the dosage and to avoid bruising. I didn't feel a thing. The needle was so fine. I probably could have done it myself. Nah who am I kidding? But that was it. With a small bag containing the remaining doses we headed home. Every day for the next 6 days, and at the same time each day, Reimi would come and give me my shot, usually while calling me a pussy or making clucking noises. A small price to pay. I was told to expect some pain in my bones toward the end of the week as my bone marrow was working overtime producing stem cells, and a few times I woke at night with pain in my chest and hips. A couple of panadol took care of this in no time and I fell back to sleep with ease.
 
On the day of the harvest, I returned to the hospital, to the same ward where I had the first injection. I was told to hop up on the gurney and get comfortable as I would be there for a few hours. I was then "plumbed" to a machine that took the blood from one arm, separated the stem cells, and returned the remainder to the other arm. This procedure is not painful at all and would be compared to a regular blood donation. Despite popular belief, they DO NOT drill holes in your bones and suck out bone marrow. (However this method is used for donations to babies and rarely as a last resort when stem cell transplants have failed.)
After the stem cells had been collected, they were handed to a specialist courier, that had arrived from Brisbane the previous day, and began their journey back to Brisbane and into my recipient. I was disconnected from the machine, given a big bag of delicious Fremantle Chocolate Factory chocolates and sent home. There were no after effects or recovery at all." 

Thank you so much for sharing this experience:) Hopefully, this helps anyone thinking about signing up to the registry, to make the move!

Peace

xx

News

It was early on a Sunday morning. We were getting ready to make our way down the coast to meet with our Cribb Island Board Riders. I walked out of our kitchen and into the living room to see Shane sitting completely stunned and as white as a ghost. 

"What is it?" I ask. 

"You're going to have read it to believe it" he says. 

It was an email. 

A very special email. 

One we had been hoping for, but not sure if we were going to get it. 

I read this email with equal parts amazement, gratitude and bewilderment! 

It was from Shane's Donor. 

The man responsible for Shane's new immune system - Leaping Leroy Loggins! 

Unfortunately, his name was not Leroy (a topic discussed earlier) and for his privacy, we will call him Mr Donor for future reference. 

Mr Donor is from Western Australia and has children the same age as us. He signed up to the Bone Marrow Registry as a dying wish from his friend who passed away at the age of 29 years, due to a lack of a matching donor. That is pretty a good incentive to sign up, but a heart-braking one. We are sorry to hear about his loss. 

The email was so eloquent and it answered almost all of our questions. This part was the most touching: 

"You were very much in my thoughts the day my stem cells were harvested. I could only imagine how you must have been feeling after massive doses of radiation and chemo to destroy your bone marrow. I knew we were at the point of no return and I hoped and prayed that everything would go to plan. I was somewhat relieved, after the harvest, when one of the nurses picked up the bag of pink jelly like stuff and said "Wow! Look at this, perfect colour, excellent quantity and so quick!" They were very impressed."

"I was totally surprised to learn that, it was not up to you to accept my cells, but for my cells to accept you and that regardless of what blood group you were, you will now have my blood group. So, its only right to share something else with you, and i want you to feel free to use it, and its a saying I have, "Blood group and attitude - B positive". 

What a great saying and one that we firmly live by! 

Mr Donor is a motor bike enthusiast and since reading this email, I have been bombarded by "I want to get a motor-bike, its in my blood". All I hear is "blah blah blah, motorbike, blah blah blah"! Of course you can get a bike baby, but it will be over my dead body! I haven't fought so hard to keep you alive all these years, only to have you throw it away on the roads! 

As for us, Im sure you can all guess by the lack of blog posts, that life is returning to normal. Ahh, normality, so refreshing! Shane returned to work last month and is really enjoying it. His vision in his right eye is still a problem, but it is slowly improving. His is still on his immunosuppresants but even these are being reduced gradually. He is looking good overall, but still a shadow of his former self. We are enjoying our puppy. She has been such a welcome addition to our lives! 

We were able to go camping over easter, and finally had the opportunity to use some of the camping gear we bought when we were planning to go down to Sydney just as Shane relapsed and spent our holiday back in hospital. We went to Murwilimbar to climb Mt Warning. It was such a great trip to get back into the swing of it! Hopefully there will be plenty more camping adventures to come!  

One final note, Mr Donor, we are so thankful for your contact and for your cells. We want you to know that your cells are treated well with a good and healthy life, and not being taken for granted. Words will never express how grateful we both are for this second chance in life. I would have given anything and everything to save my husband's life, and I am so glad that you were able to do what I couldn't. 

Thank you.

Peace

xx   

 This is us paddling the Tweed River with Dizzee Do over easter. 

 

World's Greatest Shave

Incredibly it is that time of year again that the World's Greatest Shave happens!

I remember this fundraising venture from when I was young, and the gravity of shaving off your beautiful hair to raise money was astronomical especially for a young, ballerina girl. Luckily, there are lots of others by far braver than me!

One of our dear family friends Lesley Day (from "The Days") is participating in this years World's Greatest Shave event with the hope to raise money to help find a cure for this insidious disease. The Leukaemia Foundation are instrumental in providing support for families as well as a vital provider of funding for research.

We were even mentioned in the Nambour Weekly - Im still struggling to come to terms with our new celebrity status!

Another one of our very brave friends is also participating this year - Deanne Chick.

We would love it if you could donate to help out both of these women with their fundraising venture. Small little bits all add up together to make a meaningful difference overall. Find the link attached to their names.

Lesley Day

Deanne Chick

As for the man of the hour, Shane, he is this week suffering from the flu… Every woman on earth knows what that means. Remarkably, he phoned the hospital to arrange an appointment with his Doctor, and they palmed him off to a GP! Ahh, normality…

Peace

xx




 

Happy 1st Birthday!

HAPPY BIRTHDAY TO OUR RESIDENT SUPERHERO, "LEAPIN' LEROY LOGGINS"!

On this day last year you were transplanted into your host, Shane, with the tough task of recreating a complex immune system and fighting some very little and inconvenient cancer cells. So far, you have done a wonderful job (sometimes a little too good a job!) and I am very so grateful! 

To my beloved Husband, you have been so brave in the way you face every day head on. You never complain about the crap that you have to live with every day - including me, your multitude of medications, long waits at the hospital and being on you own 5 days out of 7. This journey has been the most difficult for you, but I can assure you, we were all with you every step of the way! 

To the very generous Donor, we are coming for you! It has been a long wait, but I think it will be worth it! Freedom of Information means we can contact you to give you the thanks you deserve! (wouldn't it be quite the coincidence if his name was Leroy?!). 

The past 12 months have certainly been a challenge but I am so ecstatic that we have made it this far! This week Shane has had all of his check ups with all sorts of tests and Doctors. This included his Bone Marrow Aspirate yesterday. It will take about four weeks to get the full results, so its a long wait, but if it was any shorter, its not good news. So we're happy to wait! 

Shane is otherwise going well. He has had some more complications in his right eye associated with burst blood vessels, but thankfully, another CMV infection has now been ruled out. Unfortunately for Shane he has very limited vision in that eye and it has been quite a bit of adjustment for him. The Ophthalmologists say that it is improving. 

Shane is also looking to get back to work again very soon! What an achievement that will be for him. He's very ready for it, but also a little bit anxious. I can only imagine how difficult it would be to return to the workforce after such a long time off. But Im sure his colleagues will make him feel right at home.  Did I ever mention the time they dressed in drag and came to visit in the hospital??? That might have to wait until another blog...

Shane - Day 0 Transplant Day

The Stem Cells

Shane looks so different now!

Cuddles with newest family member, Dizzee.

We have finally ticked off one of our long standing life goals - getting a Puppy! Dizzee came to us in early December and she has been an amazing distraction for us. A Journey like ours puts all of your life goals on hold. All the big and little dreams that you have stored in you mind for the future are very quickly vanquished. Getting a Puppy was the first thing Shane talked about the day he left ICU. If I had my way, there would have been one waiting for him to return home. But, as a responsible pet owner, we had to wait until the time was right! 

Dizzee is an amazingly sweet puppy who loves lots of cuddles and affection! A very healing personality!

We have some amazing goals for this year. One of which is transforming this blog from being all about Shane, to being about helping others going through cancer treatment. There is a lot of mis-information out there, and people who are battling cancer are very vulnerable to poor guidance. From all of the experience we have, it would be great to be able to help others and give back to the universe the way the universe gave to us. 

Cheers to an AMAZING 2014! 

xx