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
Friday, December 21, 2007
Wednesday, December 12, 2007
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..."
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..."
Saturday, December 1, 2007
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
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
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