Saturday, March 28, 2009
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.
Tuesday, March 17, 2009
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,
PS. Wish us luck for a safe surgery! We can use every little bit right now.
Thursday, March 12, 2009
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,
Monday, March 2, 2009
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!