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

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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