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
