Saturday, January 19, 2008

Still Going!

Since my last Blog, Reid has had more ups and downs but thankfully more ups than downs! Christmas was lovely. Mum and Dad and Malcolm were here with us. Reid and Alex woke at 5:30am and all went normally to schedule except that Reid had been bitten quite severly by mosquitos two days prior and the bites had turned into massive blisters. All seemed to be ok however we had to go up to St Vincents on Boxing day to have them checked. All turned out ok and the blisters eventually popped. Only one had to be seen by a wound specialist on our next visit to Banksia.
We commenced Chemo #8 on New Years Eve. We got to Outpatients at 9am and commenced hydrations at 10.30am. We got to the ward close to 4pm and by this time Reid had become toally engrossed in some playstation game, so being interupted from it was like chopping off one of his arms! He threw a massive tantrum (of which the nurses are now very used to). Eventually he settled down and chemo started at 6pm. This round of chemo went quite well and Reid kept up his diet of steak, steak and more steak throughout our stay. Kylie from physio came to visit and removed the boot which had been on to support Reids foot, this was horrendous and of all the tantrums and screaming matches I have had to deal with, this was the biggest. I was beside myself and had to leave the room. Reid fears anything new. He had got used to the support so to take it away was like removing part of a security he had been holding onto. I desperatly needed a stiff drink, but seeing as it was only 10am I thought the nurses may frown! Needless to say, Kylie was to have no luck with Reid doing any excercises that day so we headed back to Toowoomba as soon as they gave the dreaded GCSF injection in his leg (another screaming match - and by this time the Cleaning fluid was looking good!!)
Being home has been fantastic. We have filled the days with lots of excercises, visits with friends, lots of playstation and TV but most importantly lots of fun! We even had two nights at Mooloolaba (see Pic). Reid needed a platelets transfusion the first Monday. And this was handled beautifully at St Vincents.
On Tuesday 8th Jan we went down to Brisbane for an appointment with Dr Steadman (the Orthopedic Surgeon). Reid had an X-Ray and all looks good, the bone is attaching itself well and everything is still in the right place. Dr Steadman mentioned that the bones in Reid's feet need some work so he has to start walking a lot more. This has been hard as Reid is still getting used to not having a boot support and everything is sore from not being used.
On Monday 14th Jan we went back to Brisbane for a GFR (kidney test) and a CT scan on Reid's lungs. The GFR requires a canula in Reids arm for a nuclear dye to be injected and then nurses take blood from his central line every hour on the hour for three hours to detect how the kidneys are filtering the dye. Obviously Reid hates needles so David was with him to get the canula in, and Reid was so brave. Alex even had a bet with him that if he didn't scream and make a fuss, she would give him her Tic-Tacs!! I was so proud of her for doing this. However once the dye was put in the canula comes out and I was with Reid for this....basically; I am sure all the staff at Nuclear Medicine in the RBH are very appreciative for having been given such a loud vocal start to their week! And Alex got her Tic-Tacs back! Reid is soooooo over hospitals. God only knows how we are going to get through this next visit.
The CT scan is to check the spots on Reid's lungs. If there are any more spots we will have to do Radiation at the end of chemo. I will get these results (and those of the GFR) on Monday 21st Jan (Chemo #9).
I am very tired and frustrated. I know we are one of the lucky ones and that Reid's treatment is going very well, but I suppose I have become selfish as I want everything to be back as it was. In between Surgery and Chemo #7 Reids Eyelashes and hair started to grow back. I was so excited, but this was short lived cos as soon as that bloody chemo took affect, they all fell out again. I have met some wonderful people, and made some life long friends. But I would selfishly say I could trade it all to go back in time and not to have had to ride this road. No child should ever be sick, and no parent should have to endure this form of torture. I feel so frightened for Reid and yet so Strong that we are over the worst. I am fearful but hopeful. I feel alone but comforted that I have so many people praying and sending lots of positive thoughts our way. This emotional turbine is taking affect on all facets of our lives. My relationship with David is turbulent, my love forAlex is forever stong,although I sometimes doubt my commitment. This is also true with my many friendships. I miss so many times I had before Cancer that I can cry quite easily just reliving the memories.So with allthese emotions twisiting my head I have decided to get some counselling next time Reid and I are in hospital. Reid's temper and fear needs to be addressed as does mine.
So Reid and I will head down the Range on Monday (21.01.08) for Chemo #9 and hopefully all going well will be back up the Range on Wednesday! Lots of Love xxx

6 comments:

Jen said...

Love you Jo.

Jen & Geoff

Toni said...

Hi Jo,
I have been following Reid's progress through this Blog page since you commenced it. Reid, you and your family are very strong and I have great admiration for you all. You appear to be trying to keep things as normal as possible for Alex, whilst still being a great support for Reid. I often think of you when I think of my own family and how things can change so dramatically. Keep strong, hope Chemo goes ok for Reid and you get positive results from his recent CT scan and testing.
Toni.

Anna Bartlett said...

I love you too.
Anna

dan-kel said...

Jo we are with you all the way
Love you ...
Kel

trevellie said...

Dear Jo & Dave
Thinking of you constantly and hope that May comes around as quickly as possible. Love to you all. Ange & Pete

Michelle, Hamish and Maddie said...

Your all very much in our thoughts Jo, stay strong. Michelle, Hamish and Maddie.