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

Monster Trucks!!!

We had such a fantastic time at the monster trucks! Josh ate like he'd never seen food before, ran around like mad and laughed and cheered the whole night.

At the end of the racing and truck section, the guy who runs it, Clive, actually came over and gave Josh his own brand new racing helmet! As you can imagine, Josh was beside himself and hasn't let it out of his sight yet. The generosity of these people is amazing, they gave the kids the best seats in the house, posters, toys, hats, flags, DVDs and of course the incredible helmet. The kids also got to see fireworks for the first time. It was a night they will never forget and so well done. Thank you so much to everyone involved and also to Poppy for organising this very special treat!

Love,

Hannah

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Yahoo!!!

It has been such a great week and a half or so for us with a brilliant outing for me going for cocktails with my favourite chicky babe Laura. I had such a great time, it is great to laugh and feel normal...no, definately NOT normal with us together...more like back to the crazy way we used to be! Josh spent all bar two days having blood counts taken, or blood or platelet transfusions (platelets got down to 7 this time, VERY low). We had a home visit from the lovely Dr Mildenhall who is looking after Josh after I called Silver Chain when I got concerned at the number and location of his Petichiae (sp?) - little burst blood vessels under the surface of the skin caused by low platelets.

I also have to say how completely proud we are of our baby Anika who is so grown up now! She has toilet trained (flipping finally!) after her beautiful best mate Jasmine showed her how. So easy now she is cooperating and is doing it of her own accord. Another milestone thanks to the lovely Laura is that our beautiful Neeks got to go for her first swimming lesson on Thursday! This is a huge deal for her as she just loves the water and used to go swimming with Peter a lot when Josh and I were in Perth alone or when he was up in clinic but now he is working more she misses out. When Laura asked if Anika would want to go with Jassy I was so excited for her and as you can see from the photos, she was a very happy camper! Many many thanks to Roara and Jas for taking her.

Tomorrow we are having more excitement with a preview of the Monster Truck Madness show that is on tomorrow night. We get to have a look in the trucks tomorrow morning, have a free ticket for the family and Josh can have a ride in one of the trucks as well as a spot close to the ring for our car so he won't get cold in the night and will be protected if it rains. Thank you so much to my awesomw dad for organising this in exchange for his work for them, I know it will be hard to wipe the smile off his face after that!!!

We had a yummy lunch at Dome with my equally yummy mum today who deserves a very big mention for looking after Anika constantly when I need to take Joshy to the hospital, both of them when I need to do non-kid friendly stuff and me when I am tearing my hair out. Mum you are a legend!

Josh has been eating like a champ and has actually put on half a kilo since he started this cycle of chemo which is just unheard of. Not only if he coping better with the chemo, his blood counts are actually the highest they have been at this stage of the cycle and in fact he could actually go ahead with chemo a week early for the next cycle, he is that great! I attribute that 1000% to having chemo in Albany and we just got the nod from the brilliant head of oncology at PMH Cathy Cole to go ahead with chemo in Albany indefinately as she can see no reason for him to go up to Perth with things as they stand! That is huge news and so fantastic for Josh, it just means a whole different lifestyle for us and a much happier and healthier little boy.

We have also been seeing a bit more of my sweet little nephew Seth. He is such a sweet little boy and I am afraid to say that he makes me feel overly clucky. It is so nice for the kids to have a cousin they can see so much of as their other cousins in Busselton are not close to them in age and we don't get to see them that often though it has been more often in the last year.

Lastly, we had a lovely phone call from Josh's OT/fiancee/favourite person ever Ranita. Se is so beautiful, when you talk to her you can actually HEAR her smiling with her voice! It was so nice to hear from her and know she was thinking of us as we have been thinking of her a lot especially lately. Ranita is what we miss most about being in PMH when we are home.

Tam, I had a great time last night poking and prodding you (we weren't making fun of you, honest!).

HAPPY BIRTHDAY TO JOSHY'S BESTEST MATE TY!!!

HAPPY 5TH BIRTHDAY TY MACHINE!!!

Love from Us

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Check out this website.

Just a quick post to say if you can, please check out this website of Childrens Neuroblastoma Cancer Foundation on uTube. It may explain one of the many reasons I am so passionate about learning how to fight this insidious disease. http://www.youtube.com/cncf2007
Love to you all, I am off to have cocktails!

Hannah
XXX

Mixed Bag

What a week. The news of the passing of James our special friend and beautiful soul hit me hard this week. I will never forget his compassion for the other kids on the ward or him making a special gingerbread man for Joshy to make him smile. He was, and will live on in our hearts, as a gentle and sweet boy who will be greatly missed.
James's death has really given me a jolt though and I am feeling so guilty for my whinging about being tired and feeling lonely. I would never sleep again if it would mean Vanya, Shane and Liam could have James back. How selfish of me for thinking about how I am feeling when someone else, another precious family has to endure the ultimate loss.
I have also been getting quite angry of late too at the lack of funding, the lack of publicity and the lack of attention paid to childrens cancer. Childrnes cancer kills more kids than AIDS, asthma, Cystic Fibrosis and Muscular Dystrophy COMBINED...think about that for a minute. That is just unbelieveable and so wrong. I need to do something so badly but I am not sure how to go about it...yet. But I will figure it out and make sure people are aware, caring and giving their time and money to find the silver bullet we are so desperate for.
Josh is well and beautiful and as healthy as we can hope for at this point, we are not at the end of this battle and where there is life there is hope. Josh has had his week of chemo and it has all run smoothly excepting an off day on Friday and the odd outburst of wanting to go home (of course). Thanks must go to everyone who ensured Josh's chemo happened here and ran smoothly, it really went perfectly to plan.
All my love
Hannah

Yawn!

I know it is like the mantra of all parents, but I AM SO TIRED!!! Anika has decided she is terrified in her own room and has not given me a full night sleep for over a week. I am so tired! It is amazing how much you can deal with when you get a proper night of rest but just now I feel pretty wired.



We have had a few excursions out fishing from the jetty (Anika and I caught a tiny Trumpeter), to the park, to Tumblejam with Grandma, to our lovely friend Julie's house (though it was very strange with Chloe at school), to Granny's for tea and to Mt Romance sandalwood factory to see Uncle Ben doing his wood turning. The kids hadn't seen Ben working on the lathe before and were mesmerised, probably as much by the enormous dust mask as by the machinery.



Josh and I headed up to the hospital not so bright but very early to start the wonders of chemo in Albany. When we had been there half an hour and Josh was being pre-hydrated we got the news that the chemo was not there..."well where is it then?" I asked poor stressed Jo. But it was a complete mystery so we continued waiting on the premise that the drugs had been misplaced in the hospital or that they hadn't been delivered when the truck came and would arrive shortly. To no avail. After two and a half hours a very well hydrated Josh and I left the hospital to try and enjoy the hot and humid day in the outside world in spite of our frustration.



At 3.30pm I had a call from Jo that the chemo had arrived; not must help at that hour really but I am so grateful for lovely Jo letting me know all was on track for tomorrow. Ho hum, we are used to waiting but I had been psyching myself up and was so anxious for things to go smoothly so we could say to any naysayers at PMH "Look, we did it and it worked perfectly!". That plan went down the crapper but I have to say that everyone has been so wonderful in helping this happen: darling Jo who will spend her weekend alone on the empty ward with us so Josh can have this chemo, Lesley who started the wheels in motion and kept them moving, Lynn for her encouragement and understanding, Felicity for trusting her instincts and being on side, Cathy for taking a gamble and being completely awesomely compassionate and last but certainly not least Suzanne for being the brilliant lady she is and making it all work. Of course there are many people behind the scenes doing leg work for us such as the beautiful David Mildenhall who I just cannot thank enough for everything, Sister Lee and PMH pharmacy for making sure everything is supplied and we all know what is happening. I always wondered how actors/resses had so many people to thank at awards ceremonies (I'm getting my practise in just in case there is a sudden desperate need for Bridget Jones look-alikes in Hollywood).



I am sorry we aren't very available to anyone right now, it isn't because we don't want to see anyone or be there but things are very changeable at the moment and I don't know from one hour to the next what we will be doing. My biggest fear is that once we come out the other side of this and are back into the "normal world" whether we will have anyone left or if we will be standing there alone because everyone else got sick of waiting and us not being there for them and buggered off. I know now everyone probably feels a bit indignant about me saying that like "of course we will stick by them, we are real friends not just in it for the good times!" but you must realise we have lost friends through this as people we thought were true friends drifted away because it was too hard. Yes, our closest frinds are still right here but honestly this is crap and there is only so much of someone elses crap you can take on board and cope with.



Thanks for listening to my pessimistic outburst but if you have made it to the bottom of this update you should be applauded! Thanks for reading and caring, much love and many hours sleep I hope,



Hannah