Josh's Birthday

The spectacular view from Josh's plaque today

Joshy's plaque with his birthday card and flowers

Peter, Uncle and Anika with the Fudgey baby

Joshy's Ben 10 cake (green of course)

Ben and Seth at the BBQ

At 6.28am on 29th November six years ago our lives were hit with cyclone Josh and have never been the same since and we wouldn't want it any other way. Of course we have had some unbelievably hard times with him and our experiences are not what I'd wish on anyone else, but I know Josh was here for a reason and he knew his purpose very clearly. Josh taught me patience, to exist in the moment instead of focussing so hard on the moments to come and in this way I feel like I really got to see how amazing Josh was and how powerful his memory is.

We felt we needed to have a birthday party for Josh which may be bizarre to some people but my feeling is that I have to carry on the celebration of Josh's life no matter how hard it might be to do it without him. Thank you to everyone who was at our beach BBQ for Josh, the weather was beautiful and we enjoyed the company of good friends and family who were so important to Josh. After a wonderful lunch and the kids having a long and exhausting play in the playground, my brother Ben and Zac, Erin and Seth joined us for a second fire-up of the barbie. It was so great to have Seth there for an important milestone for our family. I have to also say a couple of words about Ben, he's faced many struggles in his life and he is now really breaking through the other side. For all the things he may regret, there are many more he should be proud of as we are of him. I am just sorry it took me so long to see what a good person has been underneath all the time. Now also welcome to the family Erin and Zac, it must be hard to come into a family carrying such a huge amount of grief but you are doing a great job of making Ben very happy.

I don't know how to describe the emptiness without Josh here everyday and how heartwrenching it was knowing he should be with us opening his presents and enjoying the end of a big and wonderful birthday not in an urn in our lounge room. It just gnaws at me so often that he deserved anything he could wish for after what he suffered but instead his life was cut so short and cruelly ended with a relentless pain. To those people who say "You are only given what you can handle", I say screw you. If I did not have to get up each day and breathe in and out and learn how to live again for Anika, I wouldn't. No-one who has ever lost a child was dealt that because they can "handle it". Yes they may learn to get by bit by bit but that doesn't mean they deserved what they got or that they love their child any less than those who can hold theirs in their arms. I have such a struggle with Josh's last days and I realise it is something I need to learn to be at peace with but I just don't know how to. I wonder how much pain he was in, did I do what he needed, was there something he wanted and I didn't realise, did he know we were all there? I will never know the answers but for now the horror plays in my mind everytime I close my eyes.

Anika misses Josh so terribly right now and I don't know if I am doing the right things and helping her the ways she needs. I do doubt myself a lot but I know it is good for her to talk about Josh and to know it is OK to cry and tell me what is inside her and I know she desperately craves the company of other kids. She loved having Uncle to stay over on Thursday, Friday and Saturday and showing him around WhaleWorld and the coastline. She was so pleases when he came to see her and that he was so delighted with all her little talents, watching her dance and sing and swim in the bath. It was a great few days with him until he had to go back home to Bunbury.

Well, we have made it through almost seven months without Josh and I can tell you, it doesn't get any easier. I still think I see him in the playground and I still can't watch Ben 10 without crying. In saying that though we do have a huge group of friends and family there to support us; Mum, Dad, Joel, Ben, Dad & Jan, Joe & Halina, Uncle, Danny, Lea, Em, Brayden, Sunny & Alex, Glenny, Leslie & Phil, Sarah,& Rich, Molly, George, Caroline & Dave, Laura & Laught, Ty, Jas, Tam, Abby & Chris, Michael & Mish, Kim, Damien & Jo, Lesley, Lynn, Camille, Bec & Terry, Melissa, Fee & Jason, Kody, the lovely miss Immie & Ashton, Alison, Jeannie, Nola, Lois and so many other people and especially our beautiful Ranita.

Sleep well and hug your babies even tighter tonight and tell them you love them an extra time for Josh,

Hannah

A Joshy Rainbow

Anika and Ethan in Busselton

Movie Premiere

There has been a lot happening over the last few months but very little that really MATTERS! The first and only very important thing which has been happening is that our very special little friend Imogen has been getting out there and enjoying life! Well done for her and Fee, Jas, Kody and Ashton. They should be admired for making the most of the time they have together rather than getting bogged down with grief. That's not to say they aren't totally devastated and have times of mourning the future they rightly deserve. To continue being a family is what these amazing people can do for their little girl and themselves and it will help them heal over time I am sure.

I just don't want anyone to forget that just because Joshys battle is done does not mean there aren't thousands of kids fighting this war right at this moment. We can't become complacent about children's cancer, it is a terrible thing for a family to suffer and if all the people who have been touched by these horrific diseases band together to find better treatments to lead to the holy grail "CURE" surely the powers that be have to listen.

So, in order to feel like I am helping to make a consious effort to combat cancer I am organising a movie premiere, raffle and woodwork auction from 5.15pm on 5th November of The Time Traveller's Wife. Neuroblastoma affects my life everyday just with the simple fact that Josh is no longer physically in it and also that our gorgeous friend Immie still has her battle to fight. This epidemic has affected so many of my wonderful friends and their families.

Anika is happy at daycare on Mondays and other than still having trouble with reflux and sleeping she is doing really well. She talks about Joshy every day a dozen or so times, often just little comments like "look mum, a rainbow, Josh sent it for us, Hi Joshy!!!" or "Josh really liked green" or "Can I hold Joshy's elephant?" (a jade elephant I found after Josh died, he would have loved it it is little and Anika often holds it when she is sad or upset). I am very happy she isn't afraid to talk about/to him but when she turns to me with tears in her eyes saying that she misses him I wish I could spare her from the hurt we all feel.

I am still looking for part-time work with no success so far. Maybe the universe is telling me something but I am finding it hard to listen right now with all the noise that is going on in my head. I am struggling to sleep too.

Thanks for listening,

Hannah

Pray for the Holmes Family

I am just posting to ask all of you to please pray/think of/send happy and positive thoughts to our beautiful friends Fee, Jason, Kody and amazing Immie who is now fighting her third bout of Neuroblastoma. I don't know much about her condition but I do know how incredibly wonderful and courageous that sweet little girl is. I can't hold myself together at the moment so it might be a bit garbled.

Sometimes I just hate the world we live in for all the crap and horrific things that happen to people I love so much. Whatever you've got, they need it right now. Feeling this way is close enough to how I feel when we were going through all this with Josh. And these beautiful people have gone through this news TWICE now but they get back up and keep going. Also please pray for a safe arrival for the tiny new Holmes baby boy who is due to arrive in less than three weeks into the middle of this chaos.

Fee, anything, any time. Immie we love you so much and we're coming to see you soon. If love could get Immie through this she would be cured by now but it doesn't hurt to send it to give them all strength. The blog is http://www.theholmesgang.blogspot.com/ have a look and leave a message of support, this family is just amazing and have been such good friends to us.

Hannah

Recent Events

It's been ages since I posted but once again it seems like so much has happened but really so little. We have had tea out at Dylans as a family which is nice and also had nights at Mums and my Mum-in-laws for yummy food. We have been visiting Josh's plaque every week once or twice and leaving flowers for him. We also found some freesias someone else left for him which is so nice of them.

Anika has been having fun bikeriding and taking Fudge for walks and on visits to Grandmas house to play with Jedda. She had a FANTASTIC birthday party and was given lots of lovely presents. She especially loved the presents from her "away" friends Immie, Emma and Alana and her cousins Molly and George. I think she likes the idea that they are still thinking about her even though she can't see them.

On Monday she announced to me that she was going to be a doctor or nurse to help sick people and do their makeup (she will also be a part-time makeup artist - her words, not mine!). She will also have two kids; reduced from nine now thankfully, a boy and a girl. The girl will be Cloe after the Bratz character and the boy will be called Joshy. "Then I can have my Joshy back" she said and refused to believe it would not be the same Joshy and that many other kids have the same name but aren't the same person as our Josh.

My adventure at hospital last week is all sorted out and no more tetanus needles for me for a while! It wasn't fun but no damage done.

Sales of the "Josh's Bears" have been going really well thanks to my lovely mum (another $550 banked yesterday - a total of $945 from bear sales) and the Everyday Heroes page has gone up again. I am going to try and book the movie premiere of Mao's Last Dancer to boost the total. It will be in the middle of October and tickets will be $22 each. If we fill the cinema that will mean we will have another $3000 to add on and I may even try to do two premieres over the next 4 months before christmas. So...if anyone wants tickets, let me know and when it is all confirmed I will let you know. Bears are in Kingdom Kare, TumbleJam, Albany Occasional Daycare, ABC Learning, Rainbow Daycare, Albany Regional Daycare, Family House North Rd, YMCA Early Learning Centre and we are hoping to move thm around to different locations over the next couple of months. I am also purchasing 25 bears to take up to Perth to PMH on Josh's birthday to give to the kids in 3B Oncology as a sort of double present, the money ($375) goes to Childrens Cancer Institute of Australia and the kids get the heatpacks for their sore bones and tummies.

I hope everyone is happy and well and wishing all the Daddies a Happy Fathers Day for on Sunday.

Hannah

A Message to My Family

"I know your heart is breaking
as you try to understand.
I know that things didn't turn out
as you and I had planned.

But know that I am safe now,
away from all life's harm
and know that when I left you ,
I walked into God's sweet arms.

I know you waited by my side;
I heard the prayers you said.
Your voice and touch were comforting
as you stood beside my bed.

And though I couldn't tell you,
I knew that you were there.
I felt your hand in mine,
I heard you whisper in my ear.

I know you think I'm gone from you,
but dear ones, I am close.
I'd never leave alone the ones
God knows I love the most.

In your dreams I'll come to you,
we'll visit for a while.
I'll touch your hand and kiss your cheek;
we'll laugh and share a smile.

Please know that I'm at peace now,
and grateful for the chance.
For in the presence of the Lord,
with angels I now dance.

Though Heaven stands between us,
we'll never be apart:
For nothing separates
the love of those joined at the heart."

Almost three months with out Josh.

It has been so long since I posted that I can't even remember what I have told all of you. For the record, what people say about it not getting easier with time but harder is honestly true (for me at least). I have to say that I spend a huge amount of my time thinking about Josh and yes I do torture myself with thoughts of what I could/should/would have done differently if I knew what would happen in Josh's last days. I am trying hard not to feel sorry for myself but when you miss someone so much not just emotionally but also physically. Josh was such a loving touchy feely boy that not being able to cuddle him and give him a kiss goodnight is torturous.

I'm not trying to make nyone feel sorry for me but knowing mentally that Josh is not coming back is very different from the realisation really sinking in. Believing in miracles and hoping for one so strongly can make it hard to accept a terrible reality like this. The beautiful family portrait on our lounge room at least gives us something positive to focus on. Many positive things have come through Josh's illness and although so much of it was painful and incredibly sad for all of us I have always felt Josh would not win this battle, like it was meant to happen and this course was meant to carry us on to a way of living and coping with Josh's death and on to learning from the experience and taking on the life lessons he taught us. Now everything I do is influenced by what the best I can do for the most positive outcome, how I can help someone else out and how to continue to keep Josh's memory alive.

The plaque is up on the boardwalk at Middleton Beach where Josh used to stop and look out over his kingdom on earth. It is where we plan to scatter his ashes when we are technically allowed to put up a permanent plaque in 3 years time. I know he would have loved the clandestine nature of sneaking up to erect it in the middle of the night and giggling about the yellow rose (his favourite) we pinched from the bus depot to leave for him. I think Anika is pleased about having the memorial up now where she can go and say hello to him. Just after we fixed the plaque, the clouds parted and we could see Josh's star smiling down on us.
Anika is about to turn 4!!! Next weekend on 16th Aug my little baby is not a baby anymore or even a toddler...although she hasn't been for a long time now it is the finality of it that gets to me. I am never having another baby! How sad !!! I will just have to borrow Peanut and get baby fixes in the supermarket...I will hereafter be known as "that strange woman who kidnaps babies".

Anika is so excited about her party and seeing her friends. We are planning a less organised party this year and hoping it all just works out. No party games really as it is just too hard to organise with so many kids in the house! She wants a My Little Pony cake so we will see how I manage that one!!! Of course it will be a big pink and frilly day..the complete antithesis of her brother. She is still loving swimming lessons but is getting really lonely and wanting other kids to play with. A couple of weeks ago I started Anika in daycare on Mondays so she has a chance to get out of the house and make some new friends. So far it has been a huge hit! If we could afford it, I'd put her in another day but we are getting no Child Care Benefit so it is just way too much. Every day all I hear is "When can I see my friends? Can I go to see Ty and Jassy?" It feels horrible to have to say no but what can I do? She is too old for the playgroups, Toddler Gym, Rhyme Time at the library and pretty much everything else but too young for Kindy! If anyone has any other ideas I am open to suggestions.

I'm working Wednesday nights teaching Builders Registration guys spreadsheets and Thursday mornings teaching young mums Spreadsheets, Budgeting and Work Scheduling. It's going well and although it isn't much, Anika is still not happy with me being gone at all. I am enjoying it but the night classes are so tiring!
My break is over so back to work.

Hannah

What has been happening

Well, so much has happened in the last six weeks yet so little! We have recently been to Perth to hopefully catch up with everyone (not very successful as no-one was at RMH, Megazone was shut and our fave Captain Starlight Lisa was not there either!). We did get to say hi to Dr Felicity our little man's champion consultant, a few of the sweet nurses and Hil at "the desk" and of course beautiful and always lovely Ranita. We also made it to the zoo where the elephants actually came up to the wire to say hi to us! We saw my dad and Peter's too (where we stayed), visited our special friend Alison from RMH in hospital and briefly caught up with Lara, Peter's sweet cousin.

Fudge has been in and had "the snip" and tried to get his big hernia fixed - it didn't work - and is missing Josh but also being a big comfort to us. We collected Josh's ashes last week which was almost as hard as his funeral and Fudgey is always good for a cuddle when you feel rotten.

Anika of course misses Josh very badly but doesn't get too upset now, she's just lonely, not used to being an only child. We are planning to get her into daycare a day a week soon so she can be around other kids a bit more often. Otherwise she is great, so beautiful and kind and clever.

We had a very special visit last week from our PMH friend Immie and her beautiful mum Fee. They stayed with friends on Thursday and Friday night but during the day we had a ball at the pool and playcentre. Anika hasn't stopped talking about Immie ever since although at the time, they were of course grumpy with each other. It is so good to have incredible friends like that who truly understand and care enough to come all the way from Perth to see us. Thank you so much, it was so amazing to see you, outside the hospital for the first time too!

The photos are from Joshy's funeral (thanks Abby), you can see the kids having fun, it is exactly what he would have wanted.

We are mostly OK. Sometimes the world fails to spin on it's axis, but for the main part we are all getting through each day with all limbs intact.

Keep remembering his beautiful heart and capacity to love, it is the glue that holds my pieces together,

Hannah

After Life

Josh's funeral was...fitting. I can't think of any other way to describe it. Almost all of his special people were there and many people wore green to honour Josh's favourite colour. As you can imagine for those of you could not attend, it was a very emotional day and although in one way it was so teribbly sad, it was sprinkled with the magic that Josh brought to our lives. At the balloon release, there was one green balloon that hovered just above the trees for some time and the sun suddenly came out as we watched it drift out of sight. Aaron was devastated and Anika coped quite well. She and her and Josh's special PMH & RMH friend Ethan went hand in hand to say goodbye to Joshie after the ceremony and touched his hand and said what they needed to. Afterward the wake was so brilliantly done by our friend Cherie and the special Joshie cake she made (mudcake with an elephant on the top and flowers) was a fitting tribute to his love of tea parties, chocolate cake and elephants! The kids all went out and played loudly on the lawns outside the tearooms and it was just how Josh would have liked it, happy and casual.

We are not doing too badly. Just trying to re-establish a routine without Josh's constant presence. It is much harder than it sounds and it is odd moments when I break down a bit such as seeing a little boy holding his mum's hand and realising I will never feel his sticky warm hand in mine again. Having such great friends certainly eases it a bit by knowing Josh meant so much to many people. All the cards and messages are very much appreciated, even if I lack the strength right now to answer them. Huge thanks to all who have donated to www.everydayhero.com.au/hannah_wisniewski it has now boosted the total to over $2,500 which is great. We are hoping to do some more newspaper, radio and TV bits to boost that too.

Before I go, I just have to say a very big thankyou to everyone who travelled from Perth, Bunbury, Busselton and even Geraldton (over 800km away!!!) to attend Josh's celebration. It made it so special seeing some of our hospital and other friends there. I want to give you all a big hug!

Live life with passion,

Hannah

Celebration of Life

A Celebration of Life will be held for Josh at Allambie Park Crematorium Chapel tomorrow morning 23rd May 2009 from 9.15am due to severe weather conditions. We are assembling at the gate and following the cortege to the chapel. For close friends and family, a Wake will be held following the service at The Old Farm, Strawberry Hill Tearooms where we can share happy memories of Josh and any who would like to speak are welcome to.

We have been keeping busy organising things for Josh's Celebration all week and trying to spend time with Anika in between. We went to the Circus Joseph Ashton with Laura, Laught, Ty, Jassy, Grandma, Joel and Granny on the 2yr anniversary of Josh's diagnosis last Sunday. He loved the circus and would have loved to go.

We went to Anika's swimming lesson last week and yesterday to keep things as "normal" as possible for her. She misses Josh very badly and now sleeps in his room and tells everyone all about him.

Coping and not too bad at the moment, thanks for all the cards, flowers and messages of support. We appreciate all of them so much.

Hannah

Soft Angel Wings

We are saddened to let those of you who don't already know that Josh took his last breath at 3.45pm on 13th May 2009. He was peaceful and had Peter and I holding his hand, Anika giving him a kiss and his Grandma and Granny at his side. His funeral will be on Saturday 23rd May at 9.00am at the ANZAC Peace Park at this stage. Yet to be confirmed.

Thank you to all of you who have been so kind. Special thanks to Fee for her beautiful tribute to Josh which you can read http://www.theholmesgang.blogspot.com/ here.

He will be sadly missed but much loved forever.

Hannah

The past two days

Josh has had a very unsettled day today after a very comfortable day yesterday. We had to stop his subcutaneous fluids as the line stopped working and a second attempt failed also. He has had an increase in morphine infusion and had several bolus doses also yet is still not comfortable. His breathing is laboured and very mucousy which he is finding painful though he is also on medication for that. Everyone has been great coming over in the middle of the night and both the mums have been a great help too. Anika is more unsettled and is being a bit disruptive, I think she needs to find there is closure to Josh's pain (as we all do) as it is so hard to fathom how he keeps fighting in spite of terrible pain.

Wish him peace and love.

Hannah

PS Congratulations to Fee, Jas, Kody and Immie who have discovered they are having a baby boy! He looks so gorgeous even at 20weeks gestation. Well done, you are so clever!!!

Update

We have been having Silver Chain/Palliative Care Nurse and Dr visiting 3-4 times a day. Josh now has two subcutaneous lines in (under the skin), one to deliver morphine, anti nausea and calmative and another to give him some fluids as he is no longer able to swallow. Josh no longer wakes but has deeper and lighter spells of awareness. Anika summed it up well when she said "Josh can't open his eyes or move or speak now but he can hear me and he knows I am here holding his hand. We can talk in different ways now; with our hearts not our words." She is coping quite well but of course is a bit scared like the rest of us and also gets teary.

Josh's Uncle Danny and great grandad came on Friday night and left after lunch today as Josh had been asking for them before he lost consiousness. He gripped my hand tightly when they arrived. His breathing is laboured and mucousy but steady and his pulse is very strong though he has a high fever and is in considerable pain when moved to change his nappy. The doctor is confident his spine has now collapsed and we are keeping him still and holding his hand 24hrs so he is not alone. We talk about happy memories to him and he squeezes our hands every so often. The doctor feels he may yet last another day or two as he is so strong and doesn't give up.

Thank you to all of you who have emailed and messaged. I will SMS those of you whose numbers I have when Josh passes and will also let you know details of his Celebration of Life.

All our love and gratitude,

Hannah

Pray for us

Just a short note to let you know how things are for us right now. Josh is no longer eating and is having a bit of trouble with breathing and getting confused. It is expected he will pass away in the next 24 to 48 hrs.

Thanks for your ongoing love and support. Continue to send Josh happy thoughts and sweet dreams for a safe journey to heaven.

Hannah

Some photos of Josh's Birthday

Anika had a nice sleepover at Grandma's last night and a trim at the hair dressers this morning. Anika and I had a good morning at Tumble Jam (play centre) with the mums from "My Time" - a group of parents to kids with disabilities or chronic illnesses) and she spent most of the time fighting with Jas, as they normally do!

Later we had a visit from Granny who brought lots of yummy stuff for lunch, Tammy to drop off photos and Laura, Laughton, Ty and Jas which was fun if a little hectic. It was especially good to see Laught and Ty as we don't see them as often as the girls and Josh gets a real kick out of seeing them. Ty is amazing with his language and caring attitude to Josh. Josh had a great time yelling at Laughton "Fe fi fo fum, stick your finger up your bum!" and giggling his head off.

It looks as though there is a large patch of tumour in Josh's back as a very painful lump came up yesterday morning with blisters which burst. In theory he now has a neuroblastoma skin cancer too. There are new lumps on his neck today to give you an idea of how quickly this disease spreads. They were not there yesterday. The Fentanyl is now up to 275mcgm which is a hefty dose for a little one but he really needs it now. He still sits up occasionally and eats here and there but is having trouble with his emotions and gets a bit confused partially due to his "good ear" being blocked by tumour and also due to the huge dose of painkillers he is on.

We still get told constantly how much he loves all of us and Joshy's looking forward to seeing his Uncle Danny over the weekend, they have a truly special relationship. Josh is fighting long and hard but now we pray for relief for him from his suffering and happy travels when it is time. He has given everyone so much joy that heaven will be a far more beautiful place when he arrives there.

Love,

Hannah

Just Being.

The lesson we are currently learning from Josh is to be content just to be here and forget about dashing around. Work, bills, appointments - all necessary but not IMPORTANT! Spending time with Josh and being there to give him what he needs is important. Our rent inspection tomorrow seems ridiculous just now but is also nonetheless necessary.

Could all of you reading please start thinking about your memories of Josh? What I would like to do is rather than sympathy cards is for everyone to write their favourite memory of Josh (even if it is a second hand one retold by someone else) on a piece of paper and to slip it into a box at his celebration, whenever that is. I plan to make them up in a scrapbook when I am ready in the future as something tangible for Anika to hang on to when she is older so she understands the impact Josh has had on the lives of others. As she is so young, most of her memories of Josh seem to be full of hospitals and his suffering so we'd like some happy ones please! If you could start thinking about this and tell others about our wishes for his celebration should they wish to attend (ie. no flowers, donations to www.everydayheroes.com.au/hannah_wisniewski and bright colours) it would be greatly appreciated.

Right now Josh is tired and a bit down but still with his fighting spirit in tact. He has even attempted to walk a couple of times (without success, but he tried). Keep him in your thoughts and prayers.

Love,

Hannah

Having a laugh!

Just a photo of Josh today using his lovely bubble blower sent to him by his cousins Molly and George. He had a ball. Peter and I have today been choosing a Funeral Director to care for Josh once his time living is up and thanks to some of our friends who are helping us to make arrangements. We will be in touch with many more of you with ways for you to help and be part of Josh's celebration of life.

Hannah

XXXXXXXX

Josh is just going on being Josh

In spite of how tired and sore our poor man is, he is still the same loving little boy he has always been. I hope he remains this way until the end. Almost every minute of waking time he has is spent checking we are OK and telling us he loves us. This window of waking time is slowly closing and my hope is that Josh slips away gently in the next few days as it seems he might. He is up to 225mcgm of Fentanyl now and we have had three increases over the last 36hrs to keep on top of the pain which may be escalating most likely due to vertebra collapse as Felicity warned us could happen.

For the most part Josh seems fairly calm although he still periodically tells me that he feels unwell. He is probably the most accepting of what is happening of all of us and he still manages a few smiles here are there. He had such a happy time when Ty and Jazzy and Laura dropped in on Wednesday night, it really lit his face up seeing them and Laura had to rush back from Perth and pick up Ty to make it to our place but true to her word, was there when we needed her.

We are trying as best we can to discuss funeral arrangements before we absolutely have to do it so we are focussed on Anika's needs after Josh is gone. The least we can do is to give her the time and love she deserves while she tries to cope with the death of her little partner in crime!

Just a quick note to also say that while we love having our family and friends to visit, just now our focus is on spending the time with our kids as a family so it would be greatly appreciated if visits are planned beforehand. Just give us a call to see if it is appropriate to come over as things change very quickly here right now. If we say no to the visit, please do not be offended, we just reserve the right to have our special time with Josh now.

Hoping for bright rainbows and peaceful new beginnings, much love and thanks to you all,

Hannah.

Not Sure What to Say

I really can't think of a way to summarise the diverse week we have had. The most outstanding feature would have to be the extremely special visit we had from one of Josh's favourite people in the world. In fact, I would have to say one of all of our favourite people in the world. This very very special friend knows who they are and (I hope) how much they mean to our family and we are deeply touched by the lengths they went to to be there for us at this time. From the bottom of our hearts, thank you and we will love you always for what you are to Josh and what you do in this world.

I also need to thank everyone for their support and caring, especially to the other families who are living in this nightmare themselves but still take the time to think of us, check how we are doing and remember good times with our boy. I was so touched to get a message from beautiful Vanya to offer her support and check in on us. For those of you who do not know, Vanya's incredibly beautiflu and brave boy James became the most lovely angel not long ago so for her to be thinking of us is just amazing. Thank you, what a lady!

We are feeling very frustrated right now with how things keep piling up on poor Josh in spite of our efforts to alleviate his symptoms. He has just gone on to 125mcgm of Fentanyl patches to help the pain and we have tried to use some tablet form laxatives to replace some of the 55-65mL of oily liquid he has to take daily. His reflux seems to be worsening and he is sleeping more and more with very little activity in between. There is no dire issue right now but it is not hard to see Josh is suffering and it is unbelievably hard to watch.

Other than that, we are just feeling so grateful for all the help, love and support we have been offered in the last year. I have to say that the first year was so terribly lonely but now I feel like part of a much larger family. We are approaching Josh's second year since diagnosis on 16th May. In some respects, I think there is something keeping Josh with us just long enough to see the anniversary out and of course it would be very nice to have one last Mothers Day with him. The original diagnosis came the day after we spent Mothers Day 2007 with a desperately ill boy just adjusting to our second day at Hotel PMH. Last Mothers Day 2008 I was overwhelmed with how lucky we were to have Josh in remission and almost finished his Accutane treatment and watching the kids play on the beach as dolphins played in the bay. I hope this year I am not without Josh, the centre of my world.

Lastly I need to say a very big well done and Happy Birthday to the hilarious Miss Immie who just turned five! She is such a sweetheart and her family are just superstars. Love U Fee! Give "the bean" a kiss from me...maybe Jas had better do that for you Fee?!

Love to you all and trust me, if anything happens you need to know about, you will know.

Hannah

Slowly, Gently, Quietly

We had a nice week with Aaron here with us and it did Josh the world of good to see his brother. We didn't get to do much as a family due to Josh's pain and fatigue but we made several trips to Granny's and Grandma's to visit (where Josh could lie down as soon as we got there). The pain is really impacting badly on our family now and we haven't gone anywhere with all of us now for over a week. Peter took Aaron and Anika to the pool twice and we both took them to the beach for a swim when Joshy had a sleepover at Grannys on Wednesday. He has been rising sometimes at 5pm and often not getting out of bed at all. It is impossible to describe to anyone how hard it is to see your child in such agony and know the only relief they will ever get from it now is through death. I hope things do not get any worse for Josh as he doesn't want to be moved or have a bath and even wearing clothes can be too painful for him to bear now.

His pain relief has gone up to 100mcgm of Fentanyl and his breakthrough pain was being managed with 6mL of Oxycodone but now I an supposed to give him 30mL!!! How on earth am I supposed to get him to take that?! On top of the 35mL a day of laxatives that is! Yesterday I had to give Joshy a suppository to help him poop. No luck so this morning lucky Josh had me give him and enema which has also had no effect as yet. The next step is a trip to hospital and possibly surgery to remove the impaction. Something to be avioded at all costs. I have also got a script filled for Dexamethasone which may help him to be less drowsy and to enhance his feeling of wellbeing. Josh tells me just like before his original diagnosis "Mummy I don't feel good", it breaks my heart.

Anika also surprised me yesterday by saying "Mummy, I don't want Josh to die and I don't want him to go to heaven. I want him to stay here with me." So do I darling, so do I. We had a long talk about Josh not feeling pain anymore or being sick and how he would always be looking after her and how we could still see him in our hearts and in our dreams. Yesterday was all in all pretty crap!

We had a visit from my Dad and his friend Jan which the kids enjoyed. It was nice to see them and I know Josh really appreciates the effort people take to come and visit him when they can from so far away. Joshy also got a beautiful parcel from his special cousins in Jersey, Molly and George. He was so pleased and kept saying over and over "my cousins love me very much and I love them too", how sweet of you all Sarah, Rich, Molly and George, we love you too!

Smiles are quite rare now and we cherish every single one. Thankfully Fudge has been such a boon for us. Josh gets so much comfort from having him close and being loved by that little ball of fur gives him more happiness than anything we can do for him just now.

I would just like to take a second to reinforce what I am hoping for for Josh's Celebration of Life. I would really appreciate if everyone dresses brightly, it is a celebration of our lovely little man, not just a mourning of his death so no black please. Also we are asking for no flowers as they too will wither and die, instead help us save the lives of other kids by donating what you would spend on flowers to our Everyday Heroes Page so that Josh's legacy can live on in the kids who win this battle.

All our love to you all. Check out the scan I did of the articles in the papers for those of you not in Albany.----------->

Hannah

The BIG Day

Well Josh's "birthday" went of almost without a hitch! Josh's pain was not going very well and he was feeling pretty sore in the lead up to the party and his patches got adjusted up again to try and combat the pain in his head, leg and back. On the day though, he was very excited and had a nice ride to the party and to collect his best buddies Ty and Jas from Big Grove in the "Big Red Engine" - see the pic - although by the end he was very tired and sore. He had a great time opening presents and holding court from Grandma's lounge room. The fire truck(s!) turned up right on time and he had a blast (literally as he got to have a go on the fire hose) checking out all the equipment and talking to the firies. We can't thank them enough for the time and effort they put in. They made our little man VERY HAPPY! See Page 2 of Albany Advertiser for evidence!

After that, representatives from Albany Lions Club joined the fantastic firemen and presented Josh with his Child of Courage Award for "showing exceptional courage through life's hardships". It was such an honour to be recognised by his hospital team (esp beautiful Ranita and Suzanne)for his determination and the fact he tries so hard to keep a smile on through the pain and remembers always to thank his nurses even after painful and distressing procedures. It helps me to feel we are getting something right as you can pretty much throw out the rulebook of how to raise your child when they have cancer!

Huge thanks to my Mum and Dad for letting us have Josh's party there as it was his choice of venue and it was a big ask to let so many people invade their home and garden. Thank you to every single person who came and helped make the day special. Josh says now he is happy and is ready to go to his "new home" (heaven).

On Saturday we also had a surprise visit from Josh's old buddy Captain Starlight to present him with his very own cape complete with his own special message! No other child has one and it was a very touching gesture by this particular girl who we have seen very often and was one of the gorgeous Captains who visited our house last year. Josh adores her and although he did not exactly give them a warm and appreciative welcome, he later asked me if there were Captain Starlight in heaven. That gives you an idea of how much he likes them, and the Starlight Express room at the hospital. They came back the next morning to see if he was up and about and left a very touching note in the letterbox (he was still asleep when they had to head back to Perth).

Also features of the last few days are Josh's Grandad and Great Grandad (known as Uncle) came to stay and his brother Aaron is here for the week. This has lifted Josh no end and he loves his brother so much. He has been trying to get out of bed and spend time with his as much as he can but unfortunately is pretty much restricted to bed needing rest and peace. I had a lovely lunch with Jane who I used to work with at TAFE and who has been a great friend to us all. I hadn't seen her since before christmas so it was a long overdue visit!

This weekend we are looking forward to seeing the kids friends Hannah and Isaac and I can catch up with Rael. It will be so nice to see them and for them to get to say their "see you laters" to Joshie. My Dad and his friend Jan are also coming down which will be nice for the kids too.

I feel in my gut that Josh is running out of time and though I feel some dread and fear but deep down feel at peace with his passing, probably because he is so relaxed and happy to go. Perhaps it will be a fortnight, perhaps more, perhaps less. It is not up to us to make any decisions and that is a huge weight off us now. Josh is now on 84mcgm of Fentanyl and it seems to be working fairly well for the constant pain, it is just movement that is really hurting Josh now. His weight loss is pretty dramatic now as are the Peri-Orbital (eye socket) bruises from his skull tumours.

Send him love to mirror the love he gives into the world.

Hannah

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Hallelujah!

Once again, much has changed the past two days. On Sunday after shuffling pain medications, Josh leapt out of bed (OK, maybe not LEAPT but he actually climbed out) and had a fantastic day! We went to Granny's house, had a quick visit from Tammy to drop off some much appreciated Lasagne and then had a long rest. He was happy and much more settled and actually walking about so I was ecstatic. Today has been pretty much the same with a trip to the doctor with Anika (Josh actually chose to come with her for moral support) and the the nursery and to Grandma's house.
I don't have much time to update a longer post right now, but I had to let you all know how things were going. It is so hard with all the changes to pain medication as just when you think you have got on top of it it increases or changes location again. At this rate Josh should be raring to for his birthday party on Sunday so it is still on for anyone who was wondering. I think Josh understands a lot about what is going on but chooses not to talk about it. I just keep opening conversations so he knows we aren't upset to talk to him if he needs to.
We are singing the praises of Fentanyl patches which Josh is on 50mcgm of now and just wish we had known about them...oh, about two years ago!!!
Thank you for the love and support, after those two very dark days, the last 48hrs have been like a ray of sunshine and we just have to take the darkness with the light.
Hannah

The sad time is drawing closer.

A lot has changed in the last few days and not for the better. We had a nice day on Thursday with all of us going to swimming lessons with Anika and Jasmine and Laughton, Laura, Josh and I having a cup of coffee while the lesson was on. Later Josh went back down there with Peter for a swim and had a brief but happy swim. Anika and I took Fudge for a walk (bike ride for Anika) and met Abby so had a look around her new house. Later we went to the movies with the lovely McKenzies and saw Monsters Vs Aliens which the kids seemed to mostly enjoy. I did NOT appreciate Anika's dirty nappy! Lucky I did put a nappy on her just in case...

After a very restless night with Josh suffering very bad reflux, we finally got to bed at 11.30 and had a good sleep though I woke up very sore due to sleeping on Josh's floor! After sleeping almost to lunchtime and Anika going to Grannys. Josh got out of bed later in the afternoon while I was doing the house cleaning (oh the joy) and screamed his head off. From what we can tell, it seems his poor spine has finally disintegrated and collapsed on his spinal cord. This has obviously led to excrutiating pain and less mobility. Josh can still move but basically it is like being ripped apart. After a visit to Grannys for tea after the lolly shop and Josh eating nothing whatsoever all day, Dr Ward came to see Josh and we did all the medical stuff with altering pain meds etc. After that terry, Bec, Jessica, Michael and Greg dropped in for a little while and Anika went back to sleep at Grannys after a long play with Jess.

Today after a restless night with Josh in bed with me, we woke to even more pain. Josh stayed in our bed all day today with very minimal movement and his eating had stopped almost altogether until just now when he ate a bread roll! DVDs saved the day and that was what kept his spirits up today. I went out with Tammy this morning to get scripts filled, order balloons for his birthday party and get fuel/try to find present etc. It was nice to feel a bit normal but still felt a bit like I was betraying Josh even though every second of my life is filled with him even when we are not together.

Keep praying and sending Josh happy thoughts, he desperately needs them now more than ever.

Hannah

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Calm after the storm

The last week has been a bit more sanguine although still quite busy. We have still had to avoid my family due to the gastro bug they have been suffering with. We have had some great fun though.

On Sunday we had a nice visit from Pete's old friend Kim and later made a trip to the kids friends Chloe, Lachlan and Jordyn's house for a rare playtime. It is so hard for us all to get together at the same time now due to the dramatically different tangents our lives have taken so it is always nice for the three of us (Laura, Julie and I) to get to have a coffee and a chat. It keeps me sane...well, mostly anyway!

On Monday we had a visit from our great friend Abby who dropped in to say hi and ended up coming to the swimming pool with us. It was nice for her to get to see us doing family stuff instead of just sitting around. After the pool the lovely Lara (Peter's cousin) and Uncle Rob came to say hi which was quite a big deal for us since Lara had to come from Perth to achieve this! It was so nice to see them, they are beautiful people.

On Tuesday we summoned the queen of entertainment -Laura- to come entertain us for a while! After a bit of a play with the kids and showing Josh how to make bottle top badges, we piled into their car and picked Ty up from school. I don't know who was more excited, Ty or Josh and Anika! Then headed out to their place to have a nice long play with Jasmine and Ty. In the midst of phantom dogs, chooks on the roof and wee accidents, we managed a cup of tea and lots of laughs. What would I do without you guys?! Josh adores Laughton and always appreciates the time he spends setting up the XBox or playing computer games with him. The rest of the family are just as wonderful and Ty's antics have definately made me giggle a bit today remembering them. After KFC, Peter's friend Greg dropped in for a few drinks and to say hi to the kids. Happy birthday for today Baldy!

Today has been a quiet one with Josh feeling tired and wanting to rest but this arvo we are expecting a visit from Kim's wife Clare and kids Sam and Lauren then heading to Granny's for tea. We are doing pretty well just now. While Josh is OK, we are OK.

Love,

Hannah.

Bitter pill to Swallow

As most of you will probably already know, our family has suffered the ultimate blow last week. After looking at Josh's MRI scan and doing a physical exam on him, Felicity broke the horrific news that the chemo had done nothing last cycle and that further cycles, blood tests or transfusions would not be of any benefit to Josh as he had perhaps a few weeks left to be a happy boy before he was freed of his suffering. In many ways this was the most horrific thing to hear as although you may know the end is coming you always hope for a miracle and pray your child is the one in a million to survive.

Felicity explained that Josh's disease was extremely advanced now as I had suspected through seeing the metastases on his head developing (bony tumours) and his escalation of pain. He now has intercranial bruising (in his eye sockets) due to the pressure caused by these growths. My primary concern however, is the possibility Josh may spend his last days paralysed as the degeneration in his spine is now such that his vertebra are almost dust and could collapse onto his spinal cord. The support we have in place up there and at home is incredible though. Felicity is so compassionate, it is honestly very hard to see her crying. Although the consummate professional, she still has a very human side that really helps us to trust her. Cath and Suzanne have been such a great resource and have made themselves available for anything we need, I can't thank them enough. All the girls at RMH who are family to us are just indescribable. Josh means a lot to them and they have been incredibly kind to us. And of course there is Ranita, beautiful sweet Ranita. Any thought, feeling or plan we make can be sifted through with her and she has been so encouraging to all of our family. Without her, Josh would not be the happy boy he generally is, of that I have no doubt. She has been like a breath of calm in our lives and helps empower us in every aspect of this experience. Here we have Lynn from Silver Chain, Lesley from Palliative Care, The Three Angels of the oncology clinic (Jo, Carolyn and Lesley) and David Mildenhall our amazing doctor. Saying goodbye in Perth was the hardest part. Allison (from RMH) was a mess, Ranita was a saint (both came in from home on a saturday to say their farewells to our boy and I am so grateful for that) and Josh could not say the words. "Too hard" was what his answer was when it was time to say goodbye and I agree, it must have been overwhelming to leave people you love so much. We also saw Grandad and Grampy and Josh was very pleased to see them both.

Josh moved to three patches of Fentanyl as the two were not working effectively. This has lead to mood swings, drowsiness and unpredictable tantrums but he is not in pain so that is the main thing. He has days of being teary and angry but also days of happiness and excitement to get out and do things. Before we left Perth we went to AqWA the WA aquarium to have fun with Grampy and Jan. Josh LOVES the underwater conveyor belt where you can see the sharks, fish and turtles. After a short time, he became restless and wanted to leave so we did not spend long there and after lunch Josh chose Granny's birthday present from the gift shop.

The drive back from Perth was long, emotional and draining but true to form when we got back Grandma had a lovely meal ready for us so we went straight over there at Josh's request. Anika then stayed the night so we got a bit of rest. Hallelujah!!! The next day the kids went to Grannys whilst I packed to go to Dunsborough for a holiday with the kids Uncle Danny, cousins Emma and Brayden and their great grandad. Anika then stayed at Grannys the night and Josh demanded to go back to Grandmas for a sleepover and had an uneventful night in "his" bed in the spare room!

On Monday we set off to Busselton to spend the night in Uncle Dan's caravan in his yard. Josh was overjoyed to see him and his Grandad. The next afternoon we set off to Dunsborough to Glenallen Chalets - thanks to Karina and De'Arne at Camp Quality for pulling it together so quickly and Lily and John at the chalets for all their help and understanding. The stay there was incredible and allowed us to just have family time without feeling the discomfort of imposing on someones home. The chalet had a huge loft and a double room downstairs also so we fit brilliantly. The houses feel totally organic with rammed earth, exposed timber beams and nature hemming you in at the sides. Birdsong is all you can hear. Complete heaven to me! From our base there we made it to the Margaret River Chocolate Factory, Simmos Icecreamery and Anika and Peter went swimming at tranquil Meelup Bay. Anika and I got some quality time going for an evening kangaroo spotting walk and absorbed the fresh air, exercise and tranquilty.

After two nights there (one of which for Josh was terrible and he was in agony), we went back to Uncle Danny's for another night in the caravan before heading home which also turned out to be an awful night of stomach cramps and nausea for Josh so we really didn't sleep much at all. That evening Josh was in fine for beating up Danny's best mate Steve and letting loose. It was fantastic to see him so happy. Steve's wife Kerry and son Ethyn made a delicious tea for us and we all had a great if slightly boozy night (I haven't had more than one drink for a couple of months now). After arriving home the next night we had Granny over to another of Grandma's fantastic dinners (lasagne for Joshy) and had quite a good night sleep. Josh was happy to be home and over the moon to see Fudge as you can see by the photo of them asleep together!

Since then we have made a trip to WhaleWorld to "look for a ring" as Josh has developed an obsession with finding a ring to buy. I think the idea is for Anika and I to have them once he is gone but he doesn't have the words to tell me that, he just says "I will give them to you both when I am ready". It will be a daily reminder of his spirit for the future. Both the rings have green stones of course! We have visited Granny and avoided Grandmas as Seth and Ben have a gastro bug and we are not too keen on having it. We miss you guys! We had a very nice tea at Michael and Marysia's tonight and the kids had a great time watching Foxtel (Josh) and playing dolls and doggys (Anika).

We are looking forward to playing with Chloe, Lachie, Ty and Jas tomorrow, seeing Lara and Uncle Rob on Monday, visiting the pool for the first time with Josh since his treatment started, seeing Aaron soon and having a visit from Rael, Hannah and Isaac when they come down in April. We are celebrating Joshy's birthday early (nine months early as he is so excited about it!) and hoping to have time to catch up with our friends soon. For anyone we haven't got to see yet, please understand that we will ASAP but are just taking it a day at a time and when opportunities present themselves, grabbing them with both hands.

Josh is not going near a hospital again unless he asks to, is not having any further needles or procedures and is going to live the rest of his life with dignity and surrounded by love, peace and sweet dreams. As for the time he has left...who knows, it could be as little as two weeks or as long as six. Josh has fought hard and he will make his way to heaven in his own time, his independence is as much a part of him as his cheeky nature.

Thank you for your love and support, please keep the thoughts flowing as we make peace with what lies ahead. This may be what is best for Josh to end his suffering but it is not what is best for us, his family.

Much love,

Hannah

Week of Surprises

Well, it has been a really strange few days! Josh and I did not get up to the hospital at eight thirty as we were meant to as I turned the alarm off, got up and Josh cried for me to come back and cuddle him for a while as he had slept in my bed for the night. Anika had stayed at Grannys house but I still didn't get to rest so I went back to sleep and didn't wake up again until 8.45! Oops...by the time the Emla (numbing cream) had done it's work on Josh's port it was almost 10.00 so we were up in hospital until 4.45. After heading to grandmas for yummy tea, Josh fell asleep on the lounge at 5.00 and I woke him at 8.00 and after half hour of being half awake was back to sleep until 6.00am!

During the course of the previous two days the leg pain had become much worse so it was obvious we needed to go to two full Fentanyl patches for the pain as that huge number of boosters of Oxycodone without constant relief is hard on Josh's emotional state and his bowels (sorry if it was too intimate for non cancer mums!)

Aside from the pain, we had a good first day with everything running smoothly once again thanks to the lovely Jo. The sleeping as a side effect of the Fentanyl is very common and good timing as he really nedded a lot of rest just now.

Anika also decided on Sunday to have a little "trim" while mummy cooked tea (see photo) and the resulting haircut made her very proud of her efforts - I was quite impressed too considering how neat it is - and said "Now I look just like Jassy!". Daddy was not quite so enthusiastic about it but she is happy so I am happy too. No more hairbrushing battles for a while!

Day two of chemo on Tuesday looked promising as we were actually on time (Jo for once was running late) but it very soon became clear this was no ordinary day! As soon as the blood came back frothy we knew it was not right, tissue around the port got sore and puffy with flushing so we took the needle out and re-needled (with no Emla might I add, what a brave boy!). Still the same so after an X-Ray which was scary for Josh, we saw the diaphragm on top of the port you stick the needle into was leaking.

To cut a long story short we are heading to Hotel PMH in the morning to have a port inserted on the other side and the old one removed. We are hoping to get the scans done at the same time and go to Australian Hearing and do fun things like the zoo and AqWA at the same time too so it is half business and half pleasure! Pending scan results we will either stay for the chemo or stop it altogether and make Josh as comfortable as possible.

We have our fingers and toes crossed for sweet Immie and her fantastic family for great scan results tomorrow. See you up there my loves.XXX

You won't hear from me til we get home from Perth so will update in a couple of weeks probably. Until then stay safe and keep well.

All my love,

Hannah

PS. Wish us luck for a safe surgery! We can use every little bit right now.

Gearing up for Chemo

Over the last week Josh has still been feeling...pretty crap. Not exactly fantastic stuff considering he was due to start chemo again on this Monday. His haemoglobin has been hovering at 91 where it still is (normal is 115 to 145) so too low for a transfusion but just low enough for the nausea and lethargy to hit. Still on the same pain meds but has complained off and on about leg/ankle and rib pain though not too severe.

I put my shoulder and back out badly - again, *groan*.

This week we have hung out at Grannys and Grandmas and had a special outing on Tuesday. We went to visit Granny at work and had a very yummy lunch at the tearooms where it was nice and quiet so the kids had a walk in the gardens with Gran. They had been asking to go there for ages so it was the perfect excuse. Grandma booked a ride on a horse drawn wagon through a vineyard with a stop for tea and damper and a historic commentary on the history of the area. The kids loved the excitement and the horse, I loved the wine tasting but we did not love the bloody heat that day!!! It was really nice and laid back and I realised how much I miss being around horses ie. a LOT.

I cut all my hair off on the weekend and dyed it bright purple (serves Peter right for leaving me on my own most of the night!) for something different. It made my arms ache like mad cutting the back and as a result it is a lot longer than I intended and quite uneven!

I had a great night at Laura's last night at the non-Nutrimetics party (it never eventuated as the hostess was sick) so we played Pictionary - Laura and I kicked butt again - and talked. Thanks chicken for being the best friend I could ask for and always listening. For those who don't know, yesterday was just a generally crap day with cleaning, washing, shopping, blah blah blah. The photo I was sent while I limped down the grocery isles with my bloody decrepit sore back of Immie celebrating the end of her scan made me smile tho, thanks Fee, miss you guys. XXX Please pray for great scan results for Immie and a smooth pregnancy for Fee. I am so excited for them!

Check out Nurse Rochelle's Shave For the Kids blog. http://shaveforthekids.blogspot.com/ What a superstar! She isn't just a brilliant nurse and all round great chick, she also shaved her head to raise money to buy a new feed pump and pulse oximeter for the ward. What a sweetheart. I have visited her blog a few times and messaged and it is nice to be able to keep a link to the people up there we care about when we are so far away!

Love, hugs and sloppy Fudgey kisses,

Hannah