The Silver Lining…

I’m horrified to see that it’s been nearly 12 months since I last wrote a post! That’s almost unforgivable. One thing I can say in my defence is that I did write this post 5 months ago but ran in to some problems loading it on to WordPress. I saved it as a draft with the intention of trying again, and then life got in the way. Well actually a new full-time job got in the way. I was working full-time for 3 months (crazy) but am pleased to say I’m now working 3 days a week (still crazy, but not quite so bad!) I’ve been working for the medical school at Deakin University. They have a fantastic simulation centre where they have a range of expensive computerised manikin’s that can have heart attacks etc to give the students practice at dealing with serious situations. It’s set up like a hospital with a simulation technician in a control room. Ironically one of my roles is to help out with scenarios, acting as either the mother of a sick child or wife of a husband having an anaphylactic reaction or stroke. This is one area I can say I have experience!

Needless to say life has been busy. Ava is still going to the childcare centre she’s always gone to two days a week and I’ve been able to get her into family day-care with a lady called Nicola for the other day. She goes to Nicola’s home and has a ball. Ava loves role-playing and with Nicola she gets to do a lot of this. She’s so determined, inquisitive and full of life. I let her sleep with me this week as she wasn’t feeling well. When she rolled over in the morning the first words out of her mouth were “Mummy, you’re my best friend”. However when I asked her for a kiss two minutes later she wasn’t interested; it’s all on her terms, let me tell you.

I’ve reconnected with an old school friend which has been wonderful. Sam and I were very close at school, but hadn’t seen each other for 25 years and have just picked up where we left off. She has 3 children, 2 of which are the same age as Fletch and Ava. Her little girl Bonnie has become Ava’s best friend. They really adore each other. Ava has a couple of little sayings. Nearly every time we pull into the driveway she says “This is my home, where my family lives”. She say’s it so often that I can 100% say she knows where her home is. Every night we sit down to dinner she asks “So, how was everyone’s day?” and we must all go around the table informing each other about our day. It’s a nice tradition, until she gets tired and starts throwing her peas, then things can go downhill.

I am pleased to say Fletch is cruising along nicely. We’ve had two check-ups with Dr.Karin since I last wrote. We saw her 6 months ago when she returned from long service leave and she was very pleased with Fletch. The only hiccup we’ve had in the past 8 months was a not too serious reaction to a flu vaccination. Karin asked me to have Fletch vaccinated for the flu before we left the hospital, so that is what I did. The next day he complained of a headache but still went to school, however the following day we received a call from his school saying he’d become quite unwell. By the time we got him home he’d vomited and was crying, saying his head was killing him. He was obviously very distressed. I called the vaccination centre at the Royal Childrens’ Hospital to ask them what I should do, and they advised I take him to the emergency department at our local hospital. He was becoming very anxious in the car and was in a lot of pain. It didn’t take long for them to see us, which was a relief considering how busy they were. They checked his blood and urine which was all fine, and then the doctor asked if he’d ever had a migraine. Why hadn’t I thought of that? My mother used to suffer from awful migraines, she’d lie in a dark room feeling like her head would explode. Fletch had the same symptoms. The doctor gave him some Nurofen and Panadol which worked surprisingly quickly. He’d gone from thinking he was going to die to cracking jokes. The whole episode was put down to a migraine most probably caused by the vaccination.

Other than this episode he’s been really well and as busy as ever. Although at the time I thought it might be overkill having him vaccinated for the flu, I am very pleased he was. A few months ago I went down with gastric flu. I’ve had colds but never the flu, and let me tell you the flu is not just a bad cold, you really feel like you’re going to die, then you really want to die! I was pretty much bed ridden for 5 days, I have never been so sick. The kids had to stand at the bedroom door and wave to me. It was my turn to be in isolation. I was so worried the rest of the family would get sick, but thankfully they all stayed well. Ava was a little unwell, but not nearly as bad as I was.

We had another appointment with Dr. Karin a few months ago. She announced it would be the last time we’d see her as she’s retiring from clinical work. It will be strange not seeing her again. I made sure I expressed how grateful we were for all she’d done for Fletch. He is now down to 6 monthly appointments, only twice a year! We will be seeing a new doctor next time. Dr. Karin said she can’t see Fletch having any complications in the future, and that she is very pleased to see how well he’s going.

Both Ava and Fletch had birthdays in July, Fletch turned 7 and Ava turned 3. Fletch had a little party with some school friends at a local rock climbing centre, and Ava just had a little party at home with her friend Bonnie. Dancing was my life when I was young; it was all I wanted to do. Ava seems to have the same love as her favourite activity is for me to play some funky tune on the iPod so she can wiggle her hips around the kitchen, I will never get sick of watching her dance, its pure joy!

Fletch really enjoyed school last year. Last term his class was busy learning all about the ‘olden days’ and how life has changed. He really enjoyed  this learning task and it’s started a number of dinner conversations. “Mum what year were you born?” “1971, Darling” “Wow Mum, I can’t believe you’re still alive”.

Here is Fletcher’s grade one blog with photos and videos of his class dressed like children from the early 1900’s. http://ccunningham1.global2.vic.edu.au/interesting-integrated/ Fletch has also been a little ambassador for the Bank of Queensland. Every state has an ambassador and Fletch is the Victorian ambassador. A percentage of the bank’s profits are donated to Children’s Hospitals around Australia. http://www.boq.com.au/blog/Banking-on-our-Kids-Ambassadors.htm

His current obsession is basketball. He watched the Michael Jordan move ‘Space Jam’ and was hooked. He can shoot hoops for hours and has at times continued playing in the dark … “Just one more shot Mum, please”. He’s actually very good. He’s also enjoyed playing Auskick last year. On the last day of Auskick well-known Geelong Cats player Tom Hawkins played with the kids. Fletch had his photo taken with Tom and he kindly signed Fletcher’s footy top. Tom answered questions and Fletch made everyone laugh when he asked “Do you have a girlfriend?” I’m slightly concerned that his question was about girlfriends and not something like “What’s been the best game you’ve ever played?” but I suppose at least he asked something. Fletch made me chuckle the other day. At lunch time he asked for ‘burnt chicken’ as I stood looking at him thinking what a strange thing to ask for, it dawned on me. “You want smoked chicken Darling” “Yes that’s it Mum”. Fletch has now lost 8 teeth, he’s very proud of this number, although eating certain foods can be challenging. His mouth is looking like a broken piano, but somehow such a look suits a 7-year-old boy, however, I don’t think he’ll be signed for a modelling contact any time soon.

My Dad organised for my brother and his family to fly out for 3 weeks in summer. The last time Fletch saw his cousins was 4 years ago in Ireland just before his transplant, so he was so excited to see them again. It was so lovely to spend quality time together, especially considering Ireland was dealing with the worst storms in 15 years. Tom and Fletch who are the same age had a lot of fun, but also had some heated arguments, usually about the rules of cricket and who was winning. It became apparent that they are both very competitive! Emily who is 10 had grown up a lot and is such a lovely, mature girl. We also met the latest addition to the family, Isabelle who is 18 months old. Our days were mainly spent at the beach which was very relaxing. I love summertime; I don’t want it to end. Everything seems better on a sunny warm day.

Fletch is enjoying grade two and reading everything. It’s incredible how quickly it happens. He plays basketball in a little school team and has started back at swimming lessons. He’s also enjoying surfing lessons in Ocean Grove on a Saturday mornings. I do think doing the ‘Gangnam Style’ dance on a surf board would be considered showing off just a little. Fletch is such a wonderful big brother, he takes great care of Ava. Although they do fight occasionally, generally they get along very well and play beautifully. He really protects her.

The other day one of the doctors I work with asked me “what’s the main thing you learnt or gained through your experience with Fletch in hospital?” I didn’t need to think about it for long. My answer was this. No matter what challenges life throws at me I’ll get through them, and as long as my loved ones are healthy and happy, things are okay. I helped get my son through a bone marrow transplant, I can’t imagine there being too many things tougher than that. An experience like the one we went through is life changing but I learnt so much about myself. Life tested me and I know for sure what I’m capable of. I will always value the perspective, depth of compassion and strength it’s given me. That’s the silver lining. xx

Mark, Linda and the kids

Fletch and Tom at the zoo

Making contact…

I used to be very good at jotting down ideas to add to this blog when they came to me. These notes were a great trigger when I sat down to write. I think I need to start this up again, it’s a little frightening how things can be forgotten.

One thing I haven’t forgotten is that I received an email from Fletcher’s donor. I feel that as I write this, balloons and streamers should burst out from your computer screen as trumpets boom. We’ve all been looking forward to this day.

I remember so clearly Easter time 3 years ago when Fletch was in the middle of his transplant. It was at this time a young man from Germany named  René made the most incredible decision, the decision to donate his bone marrow to a sick little three-year old boy half way across the world.

The email I received from René was descriptive, compassionate, thoughtful and in English! He kindly explained how he came to be a bone-marrow donor. René was studying at university at the time. A trust for bone marrow donors called the “Stefan – Morsch – Stiftung” had a stand set up at one of the University’s yearly blood donor days. They were asking for a little blood “that could save lives”. As René said, they were right. Only a few months after signing up to the bone marrow registry he was called for further testing.

It was explained to him that there was a very sick boy in Australia and that he was 10/10 match for Fletcher. He was told he would have to make a decision to donate soon, as the situation was becoming serious. He said yes. That little word that saved Fletcher’s life.

He explained the whole process took an hour in hospital after which he was able to go home feeling just a little tired and dizzy. It was so wonderful to express to him our gratitude for what he did and to know a little about this very special person who has had such a positive impact on our lives.

I find the timing of all this nothing short of miracle. To think that René had only signed up to the registry 3 months before our doctors started searching for a suitable donor. When you think of all the things that led to that decision. René attending that particular university, the trust having a stand on this day and most importantly René walking up to that stand and making the decision to say yes to the person giving up their time to encourage people to become bone marrow donors.

I want to thank the “Stefan – Morsch – Stiftung” trust for existing. I read about how the trust was started. The website explains that in 1983 Stefan Morsch, a 16-year-old boy from Birkenfeld, a small town in the south-west of the Rhineland-Palatinate in Germany was diagnosed with chronic myelogenous leukemia, a slow-growing cancer of the white blood cells. On July 31st, 1984 Stefan received his new bone marrow in the USA at the Fred Hutchinson Cancer Research Center in Seattle, WA. Stefan was the first European that received bone marrow of an unrelated donor.

Although the transplant was successful, Stefan died on December 17th, 1984 only 17 years of age because of pneumonia. Stefan’s immune system was still too weak to defeat this new target. Stefan did not die in vain. It was his wish to establish a foundation to launch a stem cell donor registry to give all leukemia patients a chance for a cure.

Stefan’s parents Emil and Hiltrud fulfilled his wish and founded the Stefan-Morsch-Stiftung foundation with the goal to establish a national bone marrow donor registry to ensure that suitable donors could be quickly identified for any patient in need.

So thank you Stefan. Thank you for your bravery and spirit. Thank you for wanting to help others in your own time of desperate need. Thank you to your parents who had the strength in their grief to carry out your wish. You didn’t die in vain, Fletcher is testament to that. Without you, the foundation would not exist, which means the stand at the university would not have been there the day René  walked passed and I shudder to think where we would be now.

Having contact with René is like finding the final piece of the puzzle. I was so excited to hear from him, and am so glad he was happy to have contact.

Fletch and Ava are doing well. Easter school holidays have arrived and we’re looking forward to getting away for a week. We’re visiting our dear friends Jason and Claudine who live on a lovely farm in NSW. We’re even going to camp for a couple of night’s on their farm which will be very adventurous! I can’t wait. We’re also going to catch up with Tim’s family in  Cobram, NSW for his brother Brendan’s birthday which will be great fun. We’re all ready for a break and a change of scenery.

Fletch asked the other day whether there was a ‘nail fairy’ a bit of his nail fell off, and he was hoping there may be a monetary gain. It was worth a shot. He had a good term at school, it’s fantastic to hear him read.

Ava is as beautiful as ever. If I tell her to do something she doesn’t want to she says “If you say that one more time, I’m telling Daddy”. Nothing like getting told off by your 2-year-old. Most importantly she’s fully toilet trained. It’s as if it happened overnight. It’s fantastic how quickly she got it. She loves her Dora the Explorer undies, which she flashes a little too often.

Have a very safe and happy Easter break.

xo

2013…

Sunshine makes me smile.

The beautiful weather these school holidays has made us all smile. Other than the odd tantrum or fight between Ava and Fletch we’ve all had a lot of fun.

Lots of days spent at the beach, swims at the pool, park visits with family and friends….all special things. Tim and I also discovered the TV series ‘Homeland’ staring Claire Danes and became so addicted we managed to watch the first 2 seasons. It is brilliant! Thank goodness we finished it as I now have time to write this blog.

Fletch is growing up so fast. I know I sound like a broken record but it’s not just that he’s nearly as tall as me but he’s becoming more mature with regard to his tastes. He’s no longer interested in ABC for Kids only ABC 3 (the channel for older kids) he loves music and I’m not taking ‘Twinkle Twinkle Little Star’ … I’m taking Gangnam Style, One Direction and his current favourite Thrift Shop (without the rude words). He loves to watch the clip of Michael Jackson doing the Moonwalk at the MTV awards, he sits mesmerized. He walks around with a baseball cap on backwards and has developed a strut, just like John  Travolta in Saturday Night Fever. I feel like he’s about to turn into a teenager or a tween at least.

Fletch has pale skin so hasn’t really ever had much of a tan. However, with all the beautiful beach weather we’ve had, he’s managed to get some colour, not a dark tan but a tan. I must say he hasn’t got the best grasp of the value of things. I suppose not too many 6 year olds do. He made me laugh the other day when we were driving to the beach. Out of the blue he asked “Mum, when can we buy a Ferrari?” I explained it most certainly wouldn’t be this week. He did do rather well for Christmas, receiving a Captain America and Hulk costume which he loves! Dressing up is still one of his favourite activities.

Fletch is excited about grade one and is pleased some of his best friends are in his class. I’ve also signed him up to do summer sports after school on a Tuesday, swimming on a Wednesday and he still has Little Athletics on a Saturday morning. He came 2nd in the hurdles the other day and was very proud of himself, he actually has a good running style. Although there’s not an ounce of fat on him, he has strong, muscular legs. I mentioned in my last blog how he was nervous about his end of school concert, well I’m pleased to say it all went very well. He was so cute, he loved it and as I predicted he didn’t trip over on stage.

I’ve also mentioned how certain Fletch is about the things he knows. When he thinks he’s right, he’s right. The other day he was telling me about a Star Wars character called ‘Bouncy Hunter’ I said “Darling are you sure it’s not Bounty Hunter?” “No Mum it’s a Bouncy Hunter as he has jets”. In 3 seconds I’d found a Star Wars trivia site and there we found the Bounty Hunter. He actually had a little laugh at himself.

Fletcher’s career aspirations have changed again. He recently said “Mum I’ve decided I want to be a zombie catcher when I grow up” I explained that I don’t think there are too many job vacancies for such a job right now but who knows what the world will be like when he grows up. It could just be the next big thing.

Ava is as gorgeous as ever and making us laugh, although she is very strong-willed. Her latest line is “Mum, do you know what carrots are”? To which I reply “What darling?” “They’re food Mum” then she goes on to list a million other foods. She thinks she’s very clever. She’s well on the way to being toilet trained which is very exciting! The only issue is that Fletch sometimes does wee in our back garden, I mean why waste time walking inside to go to the toilet. So now she thinks that’s what she’s meant to do, nothing like a big brothers influence. She had a wonderful Christmas and was so excited about Santa’s imminent arrival that one day she shouted “It’s so exciting”! It was a lovely Christmas but we all missed my Mum, it just wasn’t quite the same without her. I keep thinking of all the things she would have loved about the day. Fletch still misses her terribly and broke down last night wishing he’d seen her in hospital before she died. I felt awful, but I just didn’t think things were going to turn out the way they did. He just feels cheated, he wanted more time with her. How does a 6-year-old make sense of it all.

Ava melted my heart the other day. She climbed into my arms for a cuddle, held my face in her hands and said “Mum, you’re my best friend”. It doesn’t get much better than that. Fletch and Ava have really loved spending more time together, I know Ava is going to miss Fletch when he starts back at school next week. We bought him some new school shoes today and we pick up his books this week. School starts on Thursday.

All went well at Fletcher’s last appointment with Dr. Karin and she passed on Fletcher’s donors contact details which was wonderful. I’ll give more details once he and I have made contact. I sent him an email a couple of weeks ago but haven’t heard back. It’s funny after waiting 3 years to say thank you, two weeks feels like forever. I’m sure I’ll get something back sometime soon.

I look forward to sharing more with you all, I hope.

xx

CHRISTMAS 2012

Fletch with Amy and Sam

Matt, Oscar, Chris and Fletch

Ava’s beautiful hair

Almost Christmas…

It’s hard to believe it’s almost Christmas.

What a wonderful year 2012 has been, with Fletch going from strength.  It only seems like yesterday we were taking photos of him on his first day of school. It’s amazing how quickly time has passed.

He’s such a funny monkey. So confident and resilient in so many ways but then will worry and worry about certain things. Maybe that’s how we all are. He likes to know exactly how things will play out. This means he asks a lot of questions and I mean a lot of questions!! He’s currently a little concerned he won’t know how things will work in grade one. I explained that his new teacher will show him and that he will learn just like he did in prep. He’s also concerned about his  school concert which is coming up, I was surprised when he became panicked about it the other night. He was worried about how many people would be there and what would happen if he tripped over on stage. What if he didn’t have a costume ready or even worse couldn’t remember the song. I reassured him that it was normal to feel nervous and that he would have a costume and that it was very unlikely he would trip over. He seemed a little more assured but not convinced. We will see how he feels closer to the date. Knowing Fletch, he will end up loving it.The great thing about Fletch is, no matter how scared he is about something, he never runs away from fear.

Fletch had the most wonderful time in Queensland on his Make a Wish trip. Tim and I needed a holiday to recover, but the main thing was Fletch and Ava had a fantastic time and I know he felt special. Fletch found the plane trip incredibly exciting. The apartment we stayed in was modern with wonderful views of the ocean and best of all was close to everything. The weather was great, not too hot and no rain.

The first theme park we visited was Sea World. After watching the Dolphin show, we were escorted to a private beach area for Fletcher’s dolphin pat. Initially we thought he was to swim with a dolphin, but a pat was still exciting. Sunny the dolphin was waiting for us, she was beautiful and pregnant. We learnt that dolphins are pregnant for 12 months and lactate for 2 years.  Fletch loved patting her. He also had a water fight with her, conducted while she sung and fed her fish and a squid. We all had a turn at patting her which was very special.

Ava still needs her day sleep. We were hoping she’d fall asleep in the pram, but we were not so lucky. By 1.30pm she was screaming! We ended up jumping in a taxi and headed back to our hotel. This was a good test run. Tim and I decided in order for Fletch to enjoy the theme parks properly, one of us would need to leave early and the other would stay with Fletch. As Timmy is the roller coaster lover and I most definitely am not, he stayed the full day at Movie World and I left at lunchtime with Ava. We bought Fletch a Batman cape and Ava a Super girl cape. She looked so cute running down the main street of  Movie World  holding her cape out. Fletch and Timmy went on every ride they could, it turns out Fletch loves roller coasters too. They had so much fun together. The next day, I stayed on at Wet and Wild water park with Fletch and he tackled some huge water slides, I was impressed. We went out to a Korean BBQ restaurant one night which was delicious and Fletch thought it was great. We all became a little addicted to this amazing Swiss ice-cream shop called Movenpick. I’m fussy when it comes to ice-cream and this was the best I’ve ever had. I’m told they have a couple of outlets in Melbourne I will have to track down.

I’ve mentioned before how alike Timmy and Fletch are so Fletcher’s eyes lit up when we took him into a Timezone. My worst nightmare, but the boys loved it. Fletch and I went on the dodgem cars together. I couldn’t believe what a wild little man he was. Taking over whenever he could, ramming in to people to get in front, as his passenger I had my hands over my eyes. I was amazed. We may have a racing car driver on our hands.

Make a Wish did a wonderful job, the whole trip was so well organised. For the first time since they started, Make a Wish have 500 children waiting for their wishes to be granted. As they need all the help they can get I said I would be happy for the local paper to do a story about Fletcher’s wish trip.

It’s amazing how children want to copy other children. Fletcher has always had a strong aversion to oranges and orange juice. One of his friends at school loves orange juice so Fletch decided he wanted to try some and now he likes it. He actually wants to try things, who would have thought!

Fletch has started little athletics which he really enjoys. He attends Saturday morning from 9am-12pm. I was amazed with how many people are involved, it’s huge and must take quite a bit to co-ordinate. I think it’s a great thing for children to do. Fletcher’s  school had their fate recently and Fletch and Ava had their faces painted. If only Ava would sit that still for us!

We had our check up appointment with Dr Karin on Monday 19th November. Fletch has had swollen glands for a while now which I mentioned to her. She felt his glands and agreed they were quite large and she said his right tonsil was inflamed. She was concerned about this as apparently it’s unusual for one to be swollen and not the other. She mentioned a disease that some children get post transplant which mimics lymphoma. My stomach dropped. I hadn’t missed that feeling. She said she needed to wait until Friday until she had the complete blood results. I felt nervous. The only thing that made me feel reassured was that he was as energetic as ever, but I’ve learnt never to assume anything. We were so relieved when Karin called back Friday to say his blood tests were normal. Karin asked us to come back to the hospital Monday to see an ear, nose and throat doctor. Fletcher’s sleep is being very compromised at the moment due to what’s going on in his throat. He snores like a trooper and struggles to breath, it’s not good to listen to. So we headed back today to discover the inflamed tonsil had gone down so we didn’t end up seeing an ear, nose and throat doctor. Dr. Karin said she wanted Fletch to have a chest x-ray to see if anything else may be causing the snoring. She said the x-ray showed a small marker (I think that means a little infection) and that she wanted to increase his antibiotics to 4 times a day for a week and we will see her on Tuesday. By Tuesday his snoring had almost disappeared. Dr. Karin said his tonsil was still a little up and to continue on the antibiotics 4 times a day for another 2 weeks. She asked us to pick up a machine from the respiratory department to monitor Fletcher’s oxygen intake at home. The irony being after months of snoring, the night we monitored him he was as quiet as a mouse. We will next see Karin in early January.

Dr. Karin had some other great news. She asked me whether I’d heard from Fletcher’s donor to which I replied no. She said that he had received the request for contact form and was very excited to hear from us. Apparently he has to get his paperwork in. I’m so excited to think that we may hear from him soon. Even just to know his name will be wonderful.

xox

.

Make a wish…

Fletch is going to be very busy when he grows up.

He plans to be a racing car driver, a superhero, astronaut, builder, architect, footballer and soccer player. I should say he was going to be all those things, now he says he just wants to be an actor. He understands that the people in movies are actors playing parts, and he really can’t think of a better job than getting dressed up and playing a cool character. He recently watched the first three Harry Potter movies, Indiana Jones and The Avengers.

I feel a little more relaxed than normal thanks to my gorgeous friend Michelle. Mich and I are old school friends who currently live quite different lives. She lives and works in Paris. When she’s not busy working she’s busy travelling. As she’s single with no children she has the freedom to design her life this way. She gave me a very generous gift. She felt what I needed most after the past few years was a break away so she organised a very special trip to Thailand for the two of us.  We spent 3 nights staying at a beautiful spa called Sala Samui and two nights at the very glamorous W Hotel on the Island of Koh Samui. It was perfect. We enjoyed treatments at the spa, delicious food, I did Thai chi and yoga and read and relaxed. It was just what the doctor ordered as they say. It was also such a treat to spend 5 nights with a best friend. I felt very spoilt and very lucky. Thanks Mich and thanks to Timmy who held the fort at home, he and the kids had a great time.

Fletch is currently on school holidays. I can’t believe he has one more term left for the year. It feels like he just started school and now he’s almost in grade one. He’s grown up so much this year. Learning to read and write and has made lots of great new friends.

Before the end of term Fletch lost his first tooth. When I picked him up from school a group of boys were huddled around him excitedly staring into his mouth. I get the feeling loosing a tooth for a 6-year-old is a big deal. There was great debate amongst the group as to where to put the tooth. “Put it under your pillow, put it in a glass of water, put it under the bed”. Fletch chose to put it in a glass of water. The next day he found 2 dollars and a poem from the tooth fairy. He says he has another wobbly tooth so the tooth fairy will be back soon.

There’s something I haven’t got around to mentioning which we’re all looking forward to. Before Fletcher’s transplant (almost 3 years ago!!) a friend whose son had a transplant told me that Fletch would be eligible for a wish from the Make a Wish Foundation. This never even occurred to me. For those of you who don’t know, the Make a Wish foundation  grants the wishes of children with life-threatening medical conditions. Since 1985, Make-A-Wish Australia has granted over 7,000 wishes to children with life-threatening medical conditions. It’s an amazing achievement. About 6 months before Fletcher’s transplant I sent in an application with a request to take Fletch to Queensland to go to Wiggles World. He was 3 at the time. His wish was granted, but it was decided it was all too rushed to proceed with the trip before his transplant so it was postponed.

Now Fletch is healthy we are set to head off on our Queensland adventure in the next month. Make a Wish will fly the 4 of us to Queensland for a week. We have passes to Movie World, Sea World and Wet and Wild. As Fletch is 3 years older he doesn’t really care about the Wiggles (sorry guys) but loves Superheros so can’t wait to have his photo taken with Batman at Movie World. Make a Wish have even organised for us to have a swim with a dolphin at Sea World!! Fletch is counting down the sleeps. It will be such a celebration and we are so grateful to Make a Wish. Fletch deserves it.

Fletch reached another milestone recently, he can swim. He can paddle and kick and not touch the bottom. It’s so wonderful to watch. He hasn’t been in the deep end yet as its early days, but he’s like a fish. He especially loves wearing his snorkel so he can keep his head under for long periods. Just in time for Queensland.

I haven’t had any contact with Fletcher’s bone marrow donor as yet. I have called the bone marrow co-ordinator at the hospital to make sure the form was sent off, she said she would check. I haven’t heard back from her so I will follow it up at our next appointment.

I’ve recently discovered audio books. Timmy listens to about one a week! I never feel I have time to read, and I miss it. Now I can read and walk Ava in the pram at the same time. It’s a multitaskers dream. One audio book I recently listened to was ‘The Happiness Project’ by New York writer Gretchen Rubin, and I loved it. It’s all about getting the most out of life. The book was narrated by the author and I found it really engaging. In it she talks about one of her goals being to write a novel in a month. This she achieves. She then had it printed to give to family members. The site she used was lulu.com. You can print a book that looks just like a book! I’ve always planned to print Fletcher’s blog for him. There are a number of sites to use but I think this is the one I will use when the time comes. I love new discoveries, big or small.

We had another exciting event this month. My brother Mark and his wife Linda welcomed a little girl into their family, Isabelle Grace, so I have a new niece and Fletch and Ava have a new cousin. It’s a pity they live in Ireland as it will be a while before we can give her a cuddle, but we are so excited for them all and can’t wait to meet her.

Life is good…

I don’t know whether it’s Mum’s passing which reinforced to me how fragile life is, or that we’re all in a good place, but right now, I’m bursting with an overwhelming sense of gratitude.

I feel very lucky and very blessed.

Every time I watch Fletch get ready for school, run out the door for Auskick or head off to soccer practice I’m reminded of how lucky we are to have our healthy boy.

Our darling girl Ava is so grown up, she makes us laugh. They’re both so funny and I love being with them. Yes, life is good.

It’s been 8 weeks since Mum passed away, although it feels much longer, I miss her terribly. Fletch misses her very much, but has stopped crying at night. For a while every time he thought of her at night it would set him off.  No matter how much I’d tell him she’ll always be with him, he’d reply “but I want her here for real, why can’t the Angels bring her back”. It broke my heart. Mum and Fletch had such a special bond. Mum believed in him and was so proud of him. She’d always say “I don’t know what he’s going to be when he grows up, but I know he’s going to do something amazing with his life”

He’s doing very well at school and most importantly, he’s loving it. He’s made some really good friends. On his school report he received excellent for effort and excellent for achievement. With the Olympics on, he’s currently learning about the world and different cultures. Every Wednesday I spend an hour with his class and teacher helping with writing. I really enjoy seeing Fletch and his mates working, and he loves me being there. I know the day will come where he’ll probably want me to drop him off at the end of the street to avoid anyone seeing me, so I must make the most of it now. When someone asks him who his teacher is he says Julia Gillard. I have to explain that it’s Miss Julie and that Julia Gillard, the current Australian Prime Minister, is a little busy to teach prep.

Fletch had his first big party when he turned 6 in July. I’m not  exaggerating when I say I think he asked about his party every night for a year in the lead up. He was beyond excited. He asked us if he could invite the whole class as he didn’t want anyone to miss out. Of course we couldn’t say no. I did explain that he could invite everyone as it was a very special first school friend party but not to expect to invite the whole class every year.

His party was held at a great indoor soccer/beach volleyball centre. We had helium balloons, lolly bags, a chocolate ripple cake and of course he received quite a few presents! 27 in total! He had the most wonderful time and was so grateful. It was a real celebration. The people who run the centre said they were the best group of kids they’d ever had, which was lovely to hear.

We attended our check up appointment with Dr.Karin yesterday and I’m pleased to say I finally received the contact donor forms from the hospital and handed them in! They really don’t encourage you to request contact with the donor, but it just wouldn’t feel right not to. At the end of the day it’s up to the donor if he wants contact with us, so what will be will be.

Fletcher’s blood test was fine. I may have mentioned this before, but yesterdays test confirmed that Fletch still has some of his A blood cells floating around so he hasn’t fully changed to the donor’s blood type. He was A+ and the donor was O-. His blood type now is A-. Karin said this wasn’t a problem and it may always stay this way. I asked her what I would say his blood type was if he was in an accident and needed blood and she said they would have to test it and any blood he had would have to be irradiated. Not sure what that means but I will find out. Karin is so pleased to see how well he’s doing saying “getting results like Fletch is what keeps us doing what we’re doing”. I thanked her again for all she had done and we both got a little teary.

We recently had an appointment with our immunologist who we hadn’t seen for a year. She was interested in reviewing Fletcher’s allergies. The skin prick test confirmed he’s no longer allergic to egg, sesame or soy but did test positive to peanuts and cashews. She said we could try almonds and hazelnuts. I put some almond meal on a slice I cooked and he didn’t have a major reaction but did get a little red around the mouth so I’ll leave that for now.  He will have a blood test in a month to test peanuts again. The blood test is far more accurate than the skin test, but I’m pretty sure it will come back positive.

Fletch also had a very big treat recently. His Aunty Julie bought some footy tickets for he and Tim to go to a game with herself and her son Adrian. Adrien follows the Bombers and Fletch the Cats, it was a big game at Eithad Stadium. I’ve never heard Fletch yell with such excitement when I said he was going. Timmy and he caught the train to Melbourne and drove home with Julie. It was his first match ever and he absolutely loved it. I called Tim at 11.45pm to check they were on the way home and Fletch answered as bright as a button. “Hi Mum, how are you?” He lasted the whole game and loved it. Aunty Julie gave him a lolly every time each team scored a goal, so I’m sure that helped!

My Mum…

My beautiful Mum passed away on the 31st May 2012 aged 70.

Even writing the above sentence doesn’t feel real. I have to remind myself that when the phone rings it won’t be her. I have to accept that the Mothers Day lunch we had to cancel due to her having a terrible headache will now never happen, and no matter how much I want to talk to her, I can’t.

The morning after Mothers Day I called her to see how she was feeling. She said she felt awful and didn’t know what was wrong with her. She’d had the worst headache she’d ever had and felt like vomiting the night before. My Mum’s health has not been good for a number of years so these symptoms were not out of the ordinary. However, my concern grew considerably when half way though our conversation she lost the ability to speak, it was as if she had marbles in her mouth. I knew something was very wrong so I called Dad straight away. He called me back and agreed something wasn’t right and an told me an ambulance was on its way. I felt sick.

She was rushed to Cabrini Hospital where it was confirmed she’d had a bleed to the left hand side of her brain, which is why her speech was affected. She was moved to the neurological ward. Mum had two heart valves replaced 15 years ago and so had to take the blood thinner Warfarin every day. The doctors discovered that Mum’s Warfarin levels were twice what they should have been which was making the bleed worse. The doctors reduced her Warfarin and put her on Heparin. Their challenge was to keep the blood thin enough so her heart would not develop a clot but not so thin that the bleed in her brain became any worse. Her heart needed one thing, and her brain needed another. It was a balancing act of sorts. One I thought would work out.

After a week she regained her speech which was wonderful. My brother Mark had also arrived from Ireland which was a lovely surprise for her. We all had time together. The doctors were planning to operate on her brain in a week and were very happy with her progress. She had good colour and her numbers were all good. Mum was worried however, maybe she sensed something wasn’t quite right. I really thought she was going to be okay.

Mark was due to fly back to Ireland on the 31st May in the afternoon. He and I had a final dinner together the night before, and Dad and he planned to visit Mum around 10am the next morning. Tim woke me up at 3am on the 31st to let me know the hospital had phoned to say Mum was not well and for me to come in. I met Dad and Mark in a small little room in the intensive care unit around 4.30am.

We waited and waited. The nurse told us they had her stable, I thought this was good news. We went to the downstairs cafe and had some breakfast. We all thought this was a hiccup but I was becoming anxious as I still hadn’t seen her. I just wanted the doctors to let us in. Finally the nurse said we could come though. She was in a bed at the very end of the intensive care unit. It was the first beautiful Autumn day since Mark had arrived. The sun streamed in. Mum was ventilated, the machine was breathing for her, but still I thought there was hope. We held her hands as we waited for the doctors, it seemed to take forever. Finally they arrived and asked if we could go back to the other room while they looked at her. In hindsight they wanted us in a private space. I still thought there was hope.

The intensive care doctor and the physician who had been in charge of her care entered the room. I looked up and said with a smile, “She was doing so well.” I could tell by his face, he was about to tell me the unimaginable. His face was so serious. “I’m sorry, we thought we were being clever but it hasn’t worked. She has developed a clot in her heart and there’s nothing that can be done.” As soon as he said those words I dropped my head in my hands as tears streamed down my face. I remember watching them fall on to my black boots. The intensive care nurse put her arms around me and squeezed me tight. I could tell Dad was not quite comprehending the situation. He told the doctor we would discuss what we’d do. “There’s nothing to discuss” he said, “she is being kept alive by the machine, her liver is shutting down, we’re turning off  her life support so you need to go and say goodbye.”

How could this be, this can’t be happening I kept thinking. But it was happening. This was that moment that you know will come one day. That moment was now and I didn’t want to say goodbye. I wanted another option, anything other than saying goodbye.

The three of us walked back in hand in hand. The nurse asked us to step out while she took off the ventilator. Dad, Mark and I just hugged each other in silence. The nurse ushered us in. I held Mum’s head and said all the things I needed to say, Mark and Dad did the same, we didn’t want to let go. I sang to her ‘You are my Sunshine’ over and over again. She took one gasp, and I buried my head in my hands. She took another and was gone. I kept looking behind at the machine, there was the flat line on the machine. We cried and cried and cried.

Her funeral was beautiful, she would have loved it and I know she would have been proud. I miss her so much, I can’t stop thinking about her, things may get harder before they get easier. There are things to be grateful for. Her passing was fast, she was not in pain and she had the three of us by her side. It’s exactly what she’s want for her final goodbye.

I wrote a piece that I read at her funeral which I’ve placed below. I’m sure she gave me strength that day, as I was amazed with how I managed throughout the day. It’s so hard to imagine my life without my Mum, but I will talk to her always, that never has to change.

“I sit here staring at a white page, watching the black cursor flash before me… a prompt to start writing my final words to you … my darling Mum.

Where do I even begin … I always remember you recounting the day I was born. You’d say you didn’t remember any pain, just the joy of holding me for the first time. “Darling it was all worth it, because I had you, I wanted you so much” … I can hear you saying these words to me so many times over my life.

We loved each other intensely…we experienced many ups and many downs, but our love never altered for a second.

I have so many special memories of our precious time together … my heart feels so full it could explode … I know many things will remind me of you … bringing back the thousands of happy memories inside of me.

I will never forget how your face would light up when I walked in a room … I know how much you loved me and I know you knew how much I loved you.

We’d dealt with it all … we’d said what needed to be said … and we were in a wonderful place when I said goodbye.

It is so hard for me to imagine my life without you … I will miss you more than words can say … but I feel you close to me now and I know exactly what you’d say … “I love you darling, everything will be okay.”

You always said you were stronger than your mother and that I was stronger than you. I will gather the strength inside to see me through … you would always tell me how much you admired me as a woman and as a mother … those words meant the world to me.

You recently gave me four stones, each engraved with a word … Hope, Love, Courage and Serenity … all things you wished for me … I will hold them close in challenging times ahead.

You’re now free from your ills … there is no more pain Mum, no more struggles … you are free.

I will finish this final love letter with the words you’d sing to me when I was young and the words I sang over and over to you in our final moments together:

You are my sunshine my only sunshine
You make me happy when skies are grey
You’ll never know dear how much I love you
So please don’t take my sunshine away.”

I love you to the moon and back…

I love you to the moon and back…that’s what Fletch said to me as we lay in bed the other night saying good night. I don’t know where he gets these lines from but he sure knows how to melt my heart.

We had a good Easter, although it does feel like the holidays went on for a very long time. Fletch is back at school and loving it. He only has good things to say about school these days which is nice.

The Easter Bunny obviously thought Fletch and Ava deserved some Easter eggs as he left a large number of little eggs hidden in the backyard. Both of them love chocolate and their desire is probably intensified by the fact they’re not given chocolate all that often. Ava was a little too keen. Within 10 seconds she’d stuffed 4 chocolate eggs in her mouth, as she tried desperately to mouth the words “more please”. It then became a case of hiding the chocolate from her which didn’t make her happy. Fletch was in chocolate heaven, and is most disappointed the Easter Bunny only comes once a year.

Fletch had a lesson with pacing himself when eating chocolate and lollies at his friend Max’s birthday party, which was held at a local swim centre. Fletch went a little hard on the lollies and cake, which was covered with bright blue icing. That afternoon we headed to Tim’s mother’s house for a sleepover. On the way to Eileen’s Fletch was complaining of a sore tummy. He wasn’t looking the best. He picked up a little when we reached Grandma’s but then went downhill. Grandma got a bucket just in case. Soon after Fletch was sick. Eileen was very impressed he grabbed the bucket just in time. After a good night’s sleep he was right again. I think we’ll avoid bright blue icing in the future.

Fletch has really got into Lego which is great, it keeps him occupied, although he still loves super heroes and Ben 10. This term he’ll be kept busy with a few extra curricular activities. He has soccer on a Tuesday afternoon which he does with his mate Oscar. All Sports at the YMCA which gives him exposure to a wide range of ball sports, and he starts Auskick on Saturday mornings. He was rather excited by the Cats 2 point win recently, although the tight game was almost too stressful for him. At one stage he sat on the floor with his hands over his eyes, too scared to look at the screen. “Mummy, I can’t watch!” He still has to get his head around the point scoring system.

A few weeks ago he had a high temp much like the last time. I took him to our local hospital where the nurse took some blood and inserted a drip of antibiotics. Nothing showed up and the following day he was fine. The pediatrician on duty called Dr.Karin at the Children’s Hospital to see how she’d like them to treat Fletch when he spikes a temp. Karin explained to the doctor that Fletcher’s immune function tests are normal, meaning he has a normal immune system. The doctors words to me were, “We need to treat Fletch as a normal boy, without a spleen.” It was so nice to hear the words “normal boy” spoken about Fletch in relation to his health. A dream come true really.

Fletch was so excited last week as he received the student of the week award. He was so proud of himself. The school is running a swim program over the next couple of weeks where the children have swimming lessons every day. They’re taken by bus to the local Leasurelink. Fletch sat next to Vittoria on the way to swimming. I never hear him talk about the girls much but he made a love heart that night and said it was for me then added it was also for Vittoria.

Over the past 6 months Fletch has developed a dreadful habit of biting his nails and even worse the quick around his nails. No matter how many times I tell him to stop it just gets worse. I think I’m going to have to buy some yucky tasting nail polish and see if that helps. Not only is it a bad habit it’s not particularly hygienic.

Our boy was famous recently. I had a call from the Children’s Hospital in the lead up to the Good Friday Appeal asking if the Herald Sun could do a story on Fletch (click the image below to read) The reporter and photographer came to our house and the next day Fletch was in the paper. He was most disappointed he wasn’t in the paper the following day, I think he expected it to be a daily occurrence.

Ava is divine! She gets cuter every day. She constantly says new words and she loves playing with Fletch, although they can have some big fights, usually over a toy. She’s cheeky, funny, loving and determined. She’s amazing at ball games and loves putting her dolls to bed. She has also become crazy about the Wiggles. Fletch loved the Wiggles too, so the old DVD’s are being used again. They are by far her favourite show to watch. She loves to learn numbers and colours, saying “more please”.

Fletch has a check up appointment with Dr. Karin on the 7th of May. I hope they have the contact donor forms ready, I will call to remind them. I would love to thank Fletcher’s donor. I have no idea what led him to become a donor, but we will be eternally grateful.

x

Max’s Party

Southern Cross Station

Risky Business

Day Dreaming

Life at school…

Fletch has only a couple of weeks left of first term, I can’t imagine how many more to go, but we’re on the way.

The first couple of weeks were a bit daunting for him but not once did he refuse to go. Instead he said things like “School is boring,  I miss kinder, I miss my kinder friends, I don’t like school, I’m scared of school, I don’t like all the new things, how much longer do I have to go?”

“Quite a while my darling, quite a while”.

I completely understand why Fletch felt this way. He loved kinder. It was small and intimate, he knew everyone, he had a great group of friends, and he pretty much got to do what he liked. What wasn’t to like?! Now he’s in a world where there are rules and work, not just play. Poor Fletch is getting his head around the reality that life is not all fun and games. A big lesson to grasp at the age of 5!

I am pleased there’s been only positive talk about school lately, so I think he’s turned a corner and he’s making some good friends. His grade 6 buddy Jessie makes sure he’s okay, and he’s getting used to the routines and different classes such as sport, music and creative movement which he loves. He really likes a boy in his class called Jake. When I asked him his top 3 favourite things about school yesterday, he smiled and said “playing with Jake, playing with Jake and playing with Jake.” He also loves playing with another boy Matthew, his friend from the other kinder he attended on a Wednesday. Although they’re in different classes they make sure they catch up in the playground at lunchtime. It’s hard to get information out of him at the end of the day, but from what I hear from other mothers, its universal.

Fletch has started to learn to read. He has a reader box which we covered in cool pictures and laminated. He brings a new reader home every night, I read it then he reads it. He thought this was all a bit boring at first so I had to explain how important it was to learn to read and write. I asked him how he’d be able to drive a car when he’s older if he can’t read a road sign, or go out to a cafe with a friend and order from the menu if he can’t read. “You can do it Mum” was his answer. I explained that it may be hard to imagine now, but he’s probably not going to want me in the car or cafe when he’s older, so best he start learning.

After telling you in my last post that we’d all been healthy, Fletch became ill a month ago. I should have kept my mouth shut. When I picked him up from school, his teacher said she thought he was sick, I put my hand on is head and felt he was burning up, his eyes were glazed over and he was upset. I took him straight from school to our local pediatrician. Fletch was so unwell he went to sleep on the doctors examination table, his temp was 40.9. We drove straight to the hospital. His temp kept rising. He had bloods taken and a drip inserted, it was obvious he’d need antibiotics fast. The doctors couldn’t quite work out the cause. Tim came to relieve me so I could bring Ava home to bed. The doctor and Tim called me later that night to ask about a graze on Fletcher’s elbow. He took a few layers of skin off his arm when we went to the park on Australia Day. It had been healing nicely but at some point it had become infected. Tim sent me a photo, and I quickly told the doctor it looked worse. It was concluded that Fletch had some type of skin infection. The antibiotics worked and after 3 nights in hospital he was home.

We had our check up appointment with Dr.Karin last week, his white cells and neutrophils were a bit high, which usually indicates an infection of some kind, but he’s been well so we’re not quite sure why. I’m sure they’ll be normal at his next visit. Fletch was meant to have his bone marrow tested but I think Karin forgot, as when I asked her she was rather vague. I’m to call her to see if this was done in the blood test, if not, it may be done next time we’re in. I also asked about collecting the form to contact Fletcher’s bone marrow donor, but they forgot about this too. I will call to remind them again. I was disappointed as I’m keen to get it filled in and sent off.

Ava is gorgeous, although still not sleeping well at night. She’s learning new words all the time and loves keeping herself busy. Some of her first words are hello, bye, up, off, more, no, please, star, eyes, ears, nose, ice, shoe, sock, bath, ball, baby, bike, see-saw, book, bib, hat, cup, bowl, car, poo. Not quite the right combination of words to make a sentence, but she uses them well. We were so excited a couple of weeks ago. Ava came into the living room and said “poo” pointing to her nappy. She then headed to the bathroom and brought in her green potty. I took off her nappy and she sat down. A moment later she stood up and turned around. She had done her first poo in the potty, clever girl. Since this time she’s also done a wee in the potty. She totally gets the concept and is so good at communicating what she needs.

I mentioned some time ago I was concerned she was lactose intolerant but that doesn’t seem the case. She used to poo a lot but that seems to have rectified itself and she seems fine with dairy. I had her weighed and measured a few weeks ago and she’s growing very well. She’s 13.5 kg (Fletch is 20 kg) and is still very tall, 97 percentile. Fletch has also had a growth spurt, it really won’t be long before they’re both looking me in the eye.

Fletch has been wonderful lately, I’m so proud of him. He’s a great help with Ava, he wants to do the right thing, he’s eating really well and wants to try new things. He’s very kind and considerate, he really is a beautiful boy in every way.

This blog has been many things. It’s been a great way to communicate with family and friends about Fletcher’s journey, it’s been good for me to get my thoughts down and it’s been a great record for us to look back on. It’s almost been a diary for me to include the things I don’t want to forget. I love the website pinterest.com I always find something that makes me smile. I found the below pin titled 21 suggestions for success. It’s something I’d like Fletch and Ava to read one day. I thought I’d post it here, so one day they will.

xx

Elbow Before

Elbow After

Our school boy…

If you thought this blog had ended without me saying goodbye you’d be wrong,  however, it’s been so long since my last post I wouldn’t blame you at all for thinking such a thing. Having Fletch and Ava at home with me for the last couple of months has given me very little time to do anything. I now know what mothers mean when they say “Thank goodness school holidays are over!”

The good news is we’ve had a very busy, happy, healthy summer break. I think I’m going to start from the present and work my way backwards. It may be easier.

We had a very exciting day last week. Fletch started school on Thursday 2nd of February, yes Fletch is a prep boy! He was very excited, insisting he button his little blue school shirt. He gave Ava a big kiss before he climbed into the car telling her he loved her and that he’d miss her, she hugged him back. Fletch and I met another mother Michelle and her son Matt at a nearby cafe for a hot chocolate (in Fletcher’s case a milkshake) at 8.30am and then walked to school together.

I think I was more overwhelmed than Fletch when we arrived, there were children of all ages and their parents everywhere, darting at us from all directions. Kinder was so gentle, intimate and peaceful in comparison, but Fletch kept focused as we weaved around the masses to find his classroom, P9. We found where his bag went, and his desk with his name on it. He and his kinder mate McKenzie were seated next to each other. There was a box of name tags on the desk, Fletch quickly found his and clipped it to his chest. I took a couple of photos and said goodbye. I didn’t feel emotional or sad just very excited. To think he was starting school a healthy boy, what’s not to be excited about.

He had a half day on Thursday and Friday and then for the next 6 weeks will attend 4 full days, having Wednesday off. After that it’s 5 days a week. I think he’s getting his head around the amount of time he will spend at school after weeks at home. Both days he had lunch with his year 6 buddy Jessie which was nice, he said they played tag and laughed.

He has been a little more tired of late, but it may just be him processing starting school, or maybe the late nights he had during the holidays have caught up with him. We took a little road trip to Wodonga in January to visit Tim’s brother Brendan, his wife Tanya and Fletcher’s cousins Amy and Sam. Fletch was terribly excited as he’s asked us many times over the last couple of years can he please, please, please visit Amy and Sam. Both Ava and Fletch coped well with the 4 1/2 hour trip. Sam has a lot of great toys which Fletch loved. We went waterskiing (even Tim and I got up!) and Fletch went on something called a biscuit, which is a round inflated plastic contraption that you lie on as the speed boat drags you along. Fletch loved it, I  wish I went on it now. When we told him he was going on the biscuit he asked whether it had nuts in it, we quickly explained it was a different kind of biscuit.

We then headed to our dear friends Jason and Claudine’s farm in Narrandera, NSW. It’s a beautiful spot and we had so much fun. They have 3 children and Fletch burst into tears when we left, he obviously had a good time. They had a swing set outside which Ava became addicted to, she couldn’t get enough. She and Fletch are very alike. Claudine pointed something out, that’s been pointed out to me before. She asked if Fletch watched a lot of Thomas the Tank Engine, to which I replied probably more than any other boy, considering all the hours he spent watching it while in hospital and home isolation. She commented on his English accent, it’s true he does have a little bit of an accent. She said she calls it the Thomas effect, boys who watch a lot of Thomas developing an English accent. So it seems he didn’t only come out of hospital with a new immune system but a new accent as well.

As the weather has been so beautiful we’ve enjoyed days at Point Lonsdale and Torquay and visited a local pool where they have a fantastic water park. Fletch was afraid to go on the longest water slide, but he conquered his fear and absolutely loved it!

He did go though a bit of a phase where he wasn’t hugging as much which did make me feel sad, I didn’t expect it to end this soon, but I’m glad to say he’s back to his affectionate self. I love hugging him so much. I think he’s more and more like Tim every day. Fletch is very outgoing with the people he knows but very quiet and shy with people he doesn’t know. He’s like two different people. He’s very funny like his Dad too.

We enjoyed a lovely Christmas (gee that feels like a long time ago) and Fletch did rather well in the way of gifts. I think the highlight was the Darth Vader and Luke Skywalker costumes and light sabers. He also loves  Ben 10, so he was over the moon when he opened his Ben 10 Omnitrix (looks like a big green watch) from Santa. Ava thought the whole day was great, even if she didn’t quite understand what all the excitement was about.

We had a check up appointment with Dr. Karin a few weeks ago and I’m happy to say that the new Royal Children’s Hospital is spectacular. I never thought I’d describe a hospital that way but it really is amazing. Not only is the design fantastic, the attention to detail and the added elements really make it a special place. The old hospital was very dated, ugly, drab and uninspiring in every way. The new hospital is the complete opposite. From the moment you step into the lift, the walls beautifully designed with colourful children’s artwork and no more waiting 5 min for a lift. As you step out into the stunning foyer, hollow in the middle, giving a great sense of space, there’s an incredible bug sculpture in the middle of the ground floor which must be as tall as 4 floors with a giant butterfly whose wings continually flutter. To one side is an enormous aquarium, on another wall sits a giant touch screen, a meerkat zoo in another direction, a beautiful gelato shop, great cafes and playgrounds, even a Hoyts cinema! It is outstanding. Such a different environment to the one we were in. I walked to the new cancer/transplant ward which is very flash. It makes the little fish bowl we were in look just that, a little fish bowl; the new transplant suites are like an ocean in comparison. I obviously couldn’t enter this secure area but I’m told there are now 8 transplant isolation rooms which  look amazing, the parents even get a bed and their own bathroom! Ahhhh, so much better than the bench we slept on. I’m really happy that the families who sadly have to be in hospital for whatever reason at least have such fantastic facilities. I’d be surprised if there was a children’s hospital in the world as good as the one we have.

Fletcher’s appointment with Dr.Karin went well and she was very excited to hear he was starting prep. It had been 3 months since we’d last seen her. His blood test was fine and we have another appointment in a few weeks, as it will be his 2 year transplant anniversary very soon. Karin wants to run some more tests and to check his bone marrow. She also said I could collect the form to make contact with Fletcher’s donor. Fletcher’s best mate Oscar came with us and both of them had a ball.

Ava and Fletch are great together. Fletch asked the other day when he could marry Ava, I explained that it probably wouldn’t be a good idea. Ava is running around, wants to sit on the potty, is saying words all the time and understands more and more. She’s independent, funny and very affectionate. It’s hard to remember a time when she wasn’t in our family. Fletch takes great care of her, holding her hand and making sure she’s okay.

All in all it’s been a great start to 2012 and I’m so proud of our boy. He told me tonight that grizzly bears like to eat salmon and listed words starting with B. I’m so looking forward to watching him learn, grow and develop over the year ahead. All we ever wanted was for him to be able to live a normal life and have the opportunity to do whatever he wanted, and that dream has started.

xx

Fletch Skywalker and Oscar Vader

THE NEW RCH

And LIFT

A DAY ON THE WATER

FIRST DAY OF SCHOOL