Tuesday, April 28, 2009

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.


Tuesday, April 21, 2009

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.----------->

Tuesday, April 14, 2009

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.



Monday, April 6, 2009


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.

Saturday, April 4, 2009

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.

Wednesday, April 1, 2009

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.