Wednesday, May 27, 2009

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 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,


Friday, May 22, 2009

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.


Saturday, May 16, 2009

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 here.

He will be sadly missed but much loved forever.


Tuesday, May 12, 2009

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.


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!!!

Sunday, May 10, 2009


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,

Friday, May 8, 2009

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.


Wednesday, May 6, 2009

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.

Monday, May 4, 2009

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 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.



Saturday, May 2, 2009

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.



Friday, May 1, 2009

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,