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

Its Christmas!

I didn't send one Christmas card this year, and of all the years that I should have this was it. So I apologise for the lack of stamped greeting and can only offer you all my love and heartfelt thanks for everything via the good ole internet...very impersonal.
Reid would like to pass on his thank yous to all his friends and all the adults who did lots of prayers for him, cos' they worked!!
Now for the update, Reid walked for the first time yesterday since May! He had the aid of a walker but he took the steps, held his weight and moved approximately two meters. David and I are so proud of him. We have been goiong to Physio three times a week since we have been at home and the sessions have obviously paid off.
Mum and Dad and Malcolm (Dave's Dad) will be here for christmas and we are so looking forward to having a really relaxing time with them.
Reid and I will head back to Royal children's Hospital on New Years Eve to have Chemo #8. We will be in hospital for two nites and three days then we come back home again. Hopefully Reid will handle this next lot of Chemo as well as he did the last one. He only needed one Platelets transfusion!
I would like to wish you all a very safe and healthy holiday break, lots of love and a wonderful Christmas. Love Jo xxx

New Old Address

We no longer have an address in Brisbane...well for the moment anyway. we went back as planned on the 3rd December and started Chemo No.7. Dr Tim said to us that all going well he could see no reason not to go Home when chemo was finished on Wednesday. I said "Do you mean Home Home??" and he said "yes", well I was a little shocked with this news and expressed my concerns with Reid being neutropenic, etc and he said that we would be able to handle it and we could liase with St Vincents in Toowoomba for blood counts, transfusions as needed. Well this was new.Reid was pretty sick for Monday and he slept most of Tuesday. However as soon as we had the dreaded GCSF injection 3pm on Wednesday we were out of Banksia and on our way back to CCS (our Unit). On Wednesday we had an X-Ray just to check how Reids Leg was looking, now these are pretty scary pictures. Thursday we had an appointment with Dr Steadman (Reids main Orthopedic Surgeon) who said that he was pleased with how Reid was doing but he wants him up and walking for Christmas. Reid burst into tears, as he is absolutely petrified of walking. He organised us to meet with Noelle Coleman the following week, a nurse at RCH who specialises in Frames and pin care (Reid has 12 pin sites in his leg - 6 actual pins). On Friday we packed and cleaned the Unit. We also went up to the Hospital as it was Party day! This is a day the hospital does every year and each of the wards has to decorate themselves to a particular theme. This year Banksia did "A Fair Dinkum Christmas" and won the award for best child involvement, we built a Ute, a Bar-B-Q and a few surfboards. Reid wasn't too helpful but some of the other kids had a ball. reid's school had had a fund raiser to go towards a party for the kids and some of the funds were used on this day. Every child I saw this day was grinning from ear to ear.
We made a new friend this time we were in and it helped us realise how lucky we are. Josh and his Dad came in on Monday night with suspected Lymphoma. Josh was very chatty and full of beans, a wonderful little boy who instantly won my and Mum's hearts. I could not help compare him to how Reid was at that stage of his road. As it turned out on Wednesday he was told that he did have Lymphoma and started his chemo journey straight away. What a Christmas they are about to have. So here we are on the road to recovery and here is a little 5 year old boy just about to start his. No child should have to endure this s--t!
We got home to Toowoomba late Friday afternoon and spent the weekend unpacking...holy smokes did we have some stuff!
Monday I knew that Reid would need a blood count done, and just as I was talking to Sullivan and Nicolaides to come around and collect blood Reid had a nose bleed. It was very heavy and lasted half and hour. This is a tell tale sign that he is low on Platelets. S and N came round and did a finger prick test (as they are unable to acess Reid's central Line and there was no way in this world that Reid was going to let them give him a needle)they sent the blood off to the lab and we made our first return day trip to RCH. When we got there we headed to Orthopedics to meet Noelle (the Pins Expert). She was an Angel, and showed me how to care for Reids pin sites relatively pain free,(I had endured the last three weeks with being abused on a daily basis, as the care I had been instructed to do was unnesecsary). We then went up to Banksia and had a Reids' Central Line care done and he was hooked up for Platelets. This only takes and hour, so as they were being done, Kylie (our Physio) came to outpatients and got Reid standing for the very first time on his good leg since the op. He screamed the place down but felt triumphant with his achievement. We headed home exhausted.
Wednesday (today) 13th December, Reid, Alex and I made our second pilgramage to the Big smoke. Today we had to have a blood count done again at 12pm which came back ok, considering he had another nose bleed this morning I was quite surprised. We then went down to Physio to see Kylie for some more hard work to try and get Reid up on his feet. He spent the first half an hour screaming his lungs out saying he couldn't do it and that he was scared; that time seemed to stand still. I was beside myself with anger, frustration and panic...eventually through sheer determination Kylie and her wonderful assistant Kate got Reid on his foot....still no weight bearing on his bad foot but at least we got him up.
We then went over to the Wesley to see Dr Pincus (The Orthopod responsible for the frame). He spoke directly to Reid and showed him how strong the frames were by standing on one in his office. He jumped up and down on this meatl thing in his RM's and even had me convinced! He then also explained to me that normally, kids are given time before an operation to get used to the fact that they are going to have one of these frames and that usually prepares them for what lies ahead. Whereas Reid woke up after the op expecting to see his leg in a cast and to his horror saw a "Transformer" attached! This fear will take sometime to work with, but he now knows that he has to walk on it as soon as possible so that he can get the thing off! Ihate the saying...but it really is "one day at a time..."

The Next Chapter

Being home has been the best thing for both Reid and I. And I am sure the time that Mum has had back at Tullimba has rejuvenated her too! Dave, Reid and I went down to Brisbane last Thursday to have a check up with Dr Theile (the Plastic Surgeon) and with Dr Tim (the Oncologist) to get the plan for our next emotional ride. Both Specialists were happy with how Reid is recovering. His wounds are healing well with only one site of concern on his bad leg. This is a operation blister that is still healing, however we are going to go ahead with chemo and watch the blister closely.
Alex has been so good for Reid and their little relationship seems to have grown. Yes they still fight and call each other names but Reid adores his big sister and askes her to stay home every day to play with him. I am sure she would prefer to stay at home too but she has missed so many days this year that I just felt she needed to end the year on a strong note. Despite all the upheaval she has had she has done really well with Grade three and is so excited to be moving into Grade four next year.
Chemo Number 7 starts Monday (3rd December) 9am. This next 8 lots of treatment is not as intense as the last 6 ; with only 2 and a half days of chemo instead of 3 and a half. Thats about the only difference. The blocks are still 21 days long, so our next block is due to fall on Christmas Eve...but Dr Tim said we will put it back to the 27th December so we can have Christmas at home! Yay!!! Reid will have to have another CT scan on his lungs at some stage to make sure there isnt any spots so radiation has not yet been ruled out.
Mum and Dad arrived yesterday and Dad will head back today. Mum, Reid and I will leave home early tomorrow morning to beat the traffic and begin our next chapter. Hopefully all going well we should be finished by June??!!! Please keep all your prayers and positive thoughts constant. I will keep everyone posted. xx

He DID IT!!

23.11.07 We are home! Reid's operation went very well. Instead of a cast on his right leg he has a metal frame to support the fibular as it is the width of a pencil! He will have this on for approximately 3 months then it will be replaced with a leg brace of which he will have have for a year...but the best news is that the pathology report on Reids Tumour said that there is no residule cancer present therefore the chemo killed the cancer!! Not much else to say really. We have to go back to see the Oncologist and the Plastic Surgeon on Thursday next week and until then I just have to clean Reids Pin sites daily and change dressings and give anti biotics....but no hospital visits for a whole week!
(The pin sites are where the pins go into his leg..see pic)
we will commence post op chemo sometime week starting 25th November. which protocole we have to do I am not sure on yet but am hoping it will be one of the lower ones with only eight more treatments. I will keep you posted. xx

YOU TUBE

The Animal Song by Savage Garden has become Reid's Anthem..we have to play it everytime we drive into and out of Brisbane. Somehow it inspires him. I love the lyrics they give me goosebumps and make me cry.
Childhood Cancer...I put this link in...all of the videos are very confronting but I thought we should all be reminded that Reid is no the only one going through this ordeal...the top pic (the Black one) is my favourite.

Next Big Step is looming

Reid's body seems to have handled the last lot of chemo so well. We did not have to go back into hospital and his spitting ceased two days after it started. However he did need two more blood transfusions, one Platelets on Saturday night and some Red Blood cells on Tuesday. So far Reid has had 9 Blood transfusions and 6 Platelet transfusions! He handles these well and the difference this makes to him is unreal. On Tuesday we also had a CT Scan to check on the spot on Reids lung. This came back positive too. The spot is still there but is now only a slight shadow. This could mean two things; 1. that it was bacteria and it is mending itself, or 2. it was a metastisis and the last bout of chemo nuked it! So Dr Tim is not ruling out radiation yet. This decision will be made when they do a histology on the tumour after it is removed Wednesday night.
Reid also had an ultra sound on his left leg to see where the main blood vessels are for the Plastic surgeon. When they remove the Fibular from Reids Left leg they will take the blood vessel too and reattach it to the blood vessel in his right leg.
On Friday morning Reid had surgery to replace his central line and remove the PICC line from his arm. He was looking forward to this as the PICC line was quite awkward and often in the way (especially when playing Playstation!) Once again he recovered well from the surgery and we headed home to Toowoomba around 2pm!
Coming Home has been fantastic. Unfortunatley, with Reid's school being hit with Parvo virus he was unable to see any of his little friends. But Keanu, one of his best friends phoned him, and Katie dropped of a picture for him...she slid it under the door...how beautiful, and how lucky Reid is to have so many friends thinking of him.
Reid and I will head back to Brisbane Tuesday morning. He has to have a blood count to make sure all is OK for Wednesday. We are also seeing an Occupational Therapist who will talk to Reid about his operation. In terms of pain, and what to expect when he wakes up. We will also be seeing The Orthopedic Surgeon, Dr Steadman, for a final chat about the operation and if all is the same we will be admitted into the Wesley Hospital Wednesday Morning (14th November)and the surgery will commence late afternoon. I will keep as many people posted as I can, thank you for all your love and prayers. Jo xx