Friday, November 28, 2008
It's the day we doubted would come tomorrow - the day Josh turns five! Last year I was thinking of moving his birthday forward as we didn't know if he'd make it through the mega-dose chemo and now it's a year later and we are having another very important day with our very grown-up little man. He is so excited about the prospect of presents and parties but for me and I am sure Peter it is a bitter-sweet day. We are so happy he will have a great time and that all his family and friends will be there to celebrate with him, but we know we will not get to celebrate another of these milestones with our brave boy, it will be his last birthday before the final goodnight we say to him.
Josh's counts are high enough for chemo now so he and I are heading up on monday morning thanks to the incredible Suzanne who just said "yep, we'll reshuffle it so you don't have to rush up here. Take your time and enjoy the party" What a star! I talked briefly to the Hospice coordinator up in ARH this morning when we were having the blood count done and we are making an appointment to meet and have a proper talk soon. I know it is something that we need to talk about and the sooner the better but it is still a real shock to the system talking to people about the impending death of your first born child.
I am hoping everything runs smoothly with the two parties, I am sure it will. Josh is over the moon that his Uncle Danny, cousins, Great Grandad, Grandad and brother could come and share the day with him, it makes it even more special.
Josh actually had the week at school this week which is the first time he has attended since the beginning of the semester when he relapsed. The school have been fantastic about things and very understanding and Josh had a ball. he had been asking to go for a while and this was the first time he has had high enough counts to do so. He loved it on Monday and Tuesday, had a tiring day Wednesday and refused to participate without very heavy encouragement in Pirate Day on Thursday. We all went in for a morning tea and it was brilliant seeing him running about with his friends and just being a little boy instead of a cancer patient.
We had a trip up to Perth due to miscommunication last Sunday and after settling in and having a count done discovering he was too low on platelets to go ahead and after getting some very much needed blood, playing madly with the lovely Louise (music therapist) and Suzanne and Benedicta sorting the mess out we promptly drove back home again! Thanks must go to my darling McKenzies for looking after the smallest member of the family while we were gone, the kids were so relieved to see him when we got back!!!
Will post birthday photos when I get home from Perth. Much love and happy thoughts "I DO believe in fairies", Immie!!
Saturday, November 8, 2008
No, not a baby, definately not but a lovely sweet and very funny puppy called Fudge. He is a 8 1/2 week old Chihuahua X Shih Tzu boy and he is Champagne and White in colour. We found him on Friday night and the first thing Joshy said when he saw him was "Hello my dog Fudge, I love you so much!"...we had to get him even though we did NOT want a Chihuahua or a male dog, we got both.
He's had a few accidents as you'd expect but he seems to be perfect so far, gentle, playful and so so tiny! Needless to say, the kids are over the moon and fought about who would get to have the first turn to hold his lead on his first trip to the beach. He really isn't fond of the water and especially hated his bath after the beach but he's fit right in with us and we already couldn't imagine life without him. It is amazing what love and joy a puppy can add to your life.
We had a delightful day at the hospital on Thursday having blood and platelets but Josh felt so much better afterwards. He had a lot of pain while we were up there until he fell asleep for an hour and Mum arrived with the pain meds. Poor little man kept telling me "I can't stand this any more mummy" I bawled my eyes out.
Last night Josh had something new when he developed and anaphylactic reaction to the icecream he ate (we presume) that contained coconut oil. Withing a few minutes he was yelling and crying about strange things which we put down to tiredness but he then said his nose hurt a bit later while I was putting him to bed. As I watched his lip swelled to triple the size and his eyes were swelling and his nose blocked up. When he said his throat hurt I got very panicked but when Peter took him up, after some Phenergan and a bit of time he got quite a lot better and by the time Mum got to our place to look after Anika and I drove to the hospital he was calm and reading a book. Although he looked terrible and said he felt a bit dizzy and yukky for the day, he is fine thank god. The worst part was seeing Anika so distressed that Josh had to be rushed off, obviously in a lot of discomfort. The poor little thing was shaking like a leaf and crying her eyes out because she was so worried about Josh. I tried to be as calm as I could, but she picked up on how serious things are. She still talks a lot about going to heaven to be with Nanna and baby Blake and Naomi. She at least knows how beautiful it is there and is not upset any more about the idea of going there and even draws pictures and makes christmas presents to take to them "when I am a grown up lady and I go to heaven".
The picture of Anika asleep on the chair is just so classic! She goes and goes and then conks out as soon as she sits down. I call her Sleeping Beauty and she loves it when I read the story to her before bed (twice tonight). She looks so uncomfortable but sat like that asleep for two hours so it can't be that bad!
Wednesday, November 5, 2008
As you will know, I haven't posted for quite some time...We have been here, there and everywhere since my last post as it was so busy over the last couple of weeks but in the midst of it all we actually had quite a good time!
We got to have a play with Miss Immie while she was still doing mega-dose and stem cell rescue (what a star). Josh was much impressed with having a friend to play with but insisted on calling Immie "Ethan"?! He hasn't seen Ethan for ages and I think it was a bit of a hearing issue but in the end we did establish that yes, Immie is a girl and yes she is actually called Imogen and not Ethan. As always, great for a laugh! We also headed to Kings Park a couple of times for play in the sunshine as the lovely Michelle and Shell did such a great job of getting him home early! Josh proceded top climb over 12ft to a platform on the rope frame, at one point losing his footing and dangling by his arms 10ft up! He then could not get down so a very nice man came to his (my) rescue. I swear I could have snapped a muscle trying not to scream!
We also took in a Hi5 show, "Playtime" thanks to RMH and got a sneak peek preview of the promotional DVD we were part of. It is so awkward watching yourself on video, especially crying!!! The kids absolutely LOVED Hi5 in spite of the fact that when we did eventually get let in out of the driving rain and our tickets did get sorted out (after 30 min!) Anika did a huge poo in her pants so I had to change it - oh the joy! Their good friends Jack and Leanna also went and were sitting right behind us. Josh sang and danced and yelled his lungs out at the funny bits and Anika was so star-struck she hardly made a sound.
We had a very busy week with running up and down for meds, chemo etc. and although we tried our hardest to push through it, the tiredness was really wearing us down. Nine nights with both kids yelling, hitting and going ape until 11.30pm is NOT my idea of fun. Josh spent one night in absolute agony as the oxycodone wore off before he got to sleep and he refused point blank to admit he was in pain or to take any more meds. Otherwise it was just the usual hell of arguing whose bed each one is sleeping in (ie. both in Mummy's bed but NOT sleeping in the same bed as each other...how the heck am I supposed to work that?!). After spending the whole of the week and the weekend going nuts at them to get to sleep, after a massive day with packing, Hi5 concert, collecting parts for the car and driving 5hrs home they slept!!!! And have been pretty great since. Just goes to show how hard it is for them to adjust to being in Perth. Our oncologist also gave us a bit more accurate estimate of the time she thinks Joshy has left - 8 to 10 months. Not fantastic but his pain is only getting a bit worse at a time not dramatically impacting on what he can do yet so I am happy he will enjoy the time. We have agreed there is no point to pursuing MIBG treatments and he is not able to receive antibodies here for compassionate use and is ineligible to go to America so we are continuing chemo while it is keeping his pain down and the progression at bay with few severe side effects.
Our very biggest news is that we are getting a puppy!!! The absolute joy we felt when the real estate agent told us the owners said yes was just incredible! The kids were beside themselves and Josh knows exactly what he wants; a brown girl dog who is small and gentle and is called Fudge (the same name as his best mate Ty's doggy and when I pointed out it was a little confusing to have two Fudgies, he gave me a withering look and said "Mum I am sure you can deal with it" HE'S 4YRS OLD!!!) So we are in the process of coordinating fencing, the Albany Children's Cancer Care Group (who are paying for the whole shebang! They are beautiful ladies and they have made us all so happy) and hospital visits.
We have had a huge muck-up with getting blood again as although Josh needed it on Tuesday when he had a count done, it got put off til Thursday to give it for some reason. When we noticed his lips going blue and small bruises appearing as we watched, we requested they hurry the hell up!!! Counts went from red cells (haemoglobin) 67 to 42 an all time record low, platelets from 19 to 9 and neutrophils 0.2 to wait for it 0.000 !!! I had no idea you could literally have no neutrophils (the white cells that fight infections) Needless to say they took notice then and wanted to admit him but we resisted and are heading to ARH for blood and platelets tomorrow. If you are going to do something why not do it properly eh? I bloody hope he gets two bags of packed cells as he will need it!!! Josh has also recorded his heaviest weight ever at 18.6kg just on the normal line for his age and maintained it through the cycle of chemo, yay for food!
We had tea with the very lovely and ever entertaining McKenzies last night which was very fun until Pete and Laughton proceded to get drunk and play loud doof doof type music with a lot of four letter words. That got the kids going and they attacked Laughton (I bet he's feeling sore today! Thanks for a wonderful night my lovely Laura!
Too much else to fill you in on all the news, but will endeavour to blog a bit more often in the future...bloody dial-up. Fee puts me to shame with how interesting, regular and creative she is.
Love and sweet dreams,
PS, we have been seeing a lot of rainbows lately which are very important symbols for Josh and I so I am sure he is going to have some very happy days ahead.