So much seems to have happened since I last posted a blog, and yet we seem to still have so much to do. Mum and Reid went very well with Chemo Number 11, and I was able to concentrate on Alex and even had the luxury of having some 'Me' time! Alex's little op went very well and the mole came back all clear thank God. She recovered well and was back at school on the Friday. I perhaps was a little mean sending her to school on that day as her cousins arrived from Taroom and Paris and Moree all wanting her to be home! As did her Grandpas from Armidale and Sydney!
Friday the 7th was a massive day. The Benefit dinner date had arrived and all was happening. The girls sold 320 tickets and were all very anxious about how the night would go. IT WAS FANTASTIC! David and I were blown away, so overwhelmed and so immersed in support that it took us several days to come back down to Earth! Everything from the Broncos cheerleaders, Reid's Godfather (AKA Bo-bo the Clown), the poignant dvd (a copy given to every guest), video messages from Marina Prior, and Darren Hayes and Ben Dark, Dave losing his speech, the launch of Clear Day, the auctions, the band, Luke the Auctioneer, and of course the massive amount of money given in support of Reid and Clear Day...how does one ever respond??...or repay. Words are insufficient. We are so loved. We are so lucky.
Reid has had a whirlwind three weeks with heap of visitors form all over the world, his first helicopter ride, being nominated and receiving a Courage Award from the Toowoomba Lions Club, Easter on our boat in Moreton Bay and a day at Movieworld. Unfortunately due to tests etc he was only able to have one day back at school, and his next time at school won't be until next term as his good week falls in the school break.
On the negative side, Reid had a rough bad week with very low blood counts and had to have a Red Blood transfusion as well as a Platelet transfusion. We also had to have a GFR (kidney Test), a CT Scan on his lungs (I get the results tomorrow 26.03.08) and his nose tube had to taken out of his right nostril and reinserted into his left nostril! It had been on that side for too long and was causing nose bleeds, so it neede to be changed. He was soooooo brave!
We are not out of the woods yet. I changed Reid's dressings on his leg this afternoon (Mon) and noticed that one of the pins near his knee is oozing and looks infected. He has some pain which can mean that it maybe infected. We are due to start chem No. 12 tomorrow but this maybe halted if he has an infection. I'm not too sure what will happen but will keep you all posted. I had better get to sleep as we need to be there at 9am in the morning and its now 10.30pm Hope you all had a wonderful Easter, we certainly did. xxx
Monday, March 24, 2008
Monday, February 25, 2008
Four down...four to go
We are now half way through post surgery chemo. Approximately 12 weeks to go. Then we have to get the frame off and have several years of physio...But physio is heaps better than chemo!! Reid handled this last lot of chemo not as well as the one before. His platelets plummeted to 6, and so needed a transfusion around day 8. We went to Brisbane to have this as it timed up with an appointment with Dr Steadman. We were to see Dr Steadman the previous week, the day after we got out of hospital. Valentines Day. This was a dumb idea cos poor little Reid was very tired and still not well so to put him back into a car and drive back to Brisbane was stupid to say the least. He and I got as far as Ipswich and he was very sick all over his clothes, the car etc. Luckily Rich and Sarah are Ipswichians, so I took the first detour and Rich took me out to his place for Reid to get cleaned up and then we made our way back to Toowoomba. Its great having family so strategically positioned!
This break has beenvery good for Reid and he seems to have put on some weight. Although I am still depending on the NG tube for his medicines, and to keep the weight on.
The appointment with Dr Staedman went very well. He was very happy with Reid's walking and his x-ray showed that the fibular has now mended well with the remaing tibia. However he does not want the frame removed just yet, and was quite adament thet the longer it stays on then the stronger the fibular will be when it is finally removed. Reid will see Dr Pinkus (The Ortho who put the frame on) on Tuesday and he will probably adjust the frame to allow some more weight to be felt by bone.
Mum heads down to Brisbane with Reid tomorrow. I am sitting this one out. I am so lucky to have Mum to do this for me, however I can't help feeling a little 'lost'. Mum will handle everything beautifully, I think its just that I have only had one day away from Reid since his diagnosis...but I am now an official spokeman for "Clear Day" a charity that promotes the importance of 'Time Out' so I had better take my own advice and relax!!
Clear Day has been accepted and taken on as an initiative with Childhood Cancer Support. Dani and I are thrilled with their enthusiam to take us on. I will be speaking at Reid's Benefit dinner on Friday nite to offically lauch 'Clear Day' and a lot of the funds raised on the night will be going to 'Clear Day' to get us up and started! I am very proud of this new project, and it is so exciting to see something so fun and good come from such a huge disruption.
No doubt you have heard all about the Benefit dinner being held for Reid and Clear day this coming Friday nite. If not go to the web site www.reidsbenefit.com.au for all the details. David and I are totally blown away with this. A group of close friends of mine (all Mums at school) got together and decided to organise a dinner to help raise funds for Reid's rehabilitation. So far 320 seats have been sold and some amazing sponsorship money has been donated. Its going to be a wonderful night organised by 7 wonderful girls, and we don't know how to thank them enough.
Also this week Alex will have a small operation to remove a mole in her hairline. The doctors are not too concerned about the mole but they do feel that it has to be removed. We will go in to Day surgery on Wednesday and Alex will have a couple of days off school (yay!!) I think she actually wanted the whole week off.... But hankfully Mum will be in charge of Reid and Chemo, so I will be able to concentrate on Ally-pal.
Reid will be spoilt rotten over the next two days. And I feel better already....
This break has beenvery good for Reid and he seems to have put on some weight. Although I am still depending on the NG tube for his medicines, and to keep the weight on.
The appointment with Dr Staedman went very well. He was very happy with Reid's walking and his x-ray showed that the fibular has now mended well with the remaing tibia. However he does not want the frame removed just yet, and was quite adament thet the longer it stays on then the stronger the fibular will be when it is finally removed. Reid will see Dr Pinkus (The Ortho who put the frame on) on Tuesday and he will probably adjust the frame to allow some more weight to be felt by bone.
Mum heads down to Brisbane with Reid tomorrow. I am sitting this one out. I am so lucky to have Mum to do this for me, however I can't help feeling a little 'lost'. Mum will handle everything beautifully, I think its just that I have only had one day away from Reid since his diagnosis...but I am now an official spokeman for "Clear Day" a charity that promotes the importance of 'Time Out' so I had better take my own advice and relax!!
Clear Day has been accepted and taken on as an initiative with Childhood Cancer Support. Dani and I are thrilled with their enthusiam to take us on. I will be speaking at Reid's Benefit dinner on Friday nite to offically lauch 'Clear Day' and a lot of the funds raised on the night will be going to 'Clear Day' to get us up and started! I am very proud of this new project, and it is so exciting to see something so fun and good come from such a huge disruption.
No doubt you have heard all about the Benefit dinner being held for Reid and Clear day this coming Friday nite. If not go to the web site www.reidsbenefit.com.au for all the details. David and I are totally blown away with this. A group of close friends of mine (all Mums at school) got together and decided to organise a dinner to help raise funds for Reid's rehabilitation. So far 320 seats have been sold and some amazing sponsorship money has been donated. Its going to be a wonderful night organised by 7 wonderful girls, and we don't know how to thank them enough.
Also this week Alex will have a small operation to remove a mole in her hairline. The doctors are not too concerned about the mole but they do feel that it has to be removed. We will go in to Day surgery on Wednesday and Alex will have a couple of days off school (yay!!) I think she actually wanted the whole week off.... But hankfully Mum will be in charge of Reid and Chemo, so I will be able to concentrate on Ally-pal.
Reid will be spoilt rotten over the next two days. And I feel better already....
Saturday, February 9, 2008
Ready for No. 10
Monday 11th February, Reid and I will head back to Brisbane for Round #10. These past three weeks have been fabulous. Reid seems to be getter stronger with each hit of chemo. Its as if his body now knows that there isnt any cancer left and it can handle the chemo easily! (touch wood). Reids blood counts remained above the criteria and so we did not need a transfusion this time, yay! And by the third week, Monday 4th Feb, Reid made it back to school. He was so excited. He lasted for 2 hours on the first day and then on Tuesday, WIN TV came and did a story on him, so that was really exciting too. By Friday, he was up to staying a whole day, but we had physio first so we didn't get to school till 10am. Reid has the most wonderful teacher, Mrs Coman who says that Reid hasn't changed much from last year...still doesnt know when to stop talking! He also has a carer, Kym Murray (funded by Catholic Education) who looks after Reid whilst he is at school. Kym is a beautiful person who has made the seperation anxiety (only felt by me I might add) much easier. I am so indebted to Mrs Debbie Bassingsthwaite from Mater Dei who pushed me to fill in the forms so Reid could be assesed favourably for care. And Cath Ed has been so very supportive with our request. I never realized the support network that was out there. Repeating Year one is wonderful, the children in Reids class know all about him as they watched all his trials and tribulations with the year ones last year from their Prep room. Reid knows a lot of the kids and one of Reids little friends from last year is back again too. Max was fantastic for Reid in these first few days!
Reid is now walking a little more and for the first time in a very, very, long time he took himself to the toilet....I stood close by, but he got there all by himself and back to bed (after washing hands of course) all by himself. He was so proud of himself too.
He knows we have to go back to Brisbane tomorrow, and his only fear is the GCSF needle he has to have before we leave on Wednesday. Bloody Needles. But this needle is so important to the recovery from chemo, so I can't not fight for him not to have it. Its such a clever needle as it tells the bone marrow to start producing again and not to give up. In America each one of these injections costs close to $2000. Here in sunny Queensland this injection costs me $5!! Who says we have a rotten health system??? Reid has had to have 24 of these injections so far, 14 of which I had to draw up and give to him before his Stem cell harvest.
On Friday afternoon we get out of RCH and I will meet Dave at Blacksoil with Reid and then I will return to Brisbane for a meeting with Childhood Cancer Support. I came up with an idea a little while ago to start a charity that deals with granting carers of children with cancer a Time Out. I told the idea to a dear friend I have made since being at RCH and she came up with the name...Clear Day. After many hours Dani and I put together a profile, Anna (my very talented Artistic friend) designed a logo and we presented it to Childhood Cancer Support. They were impressed, and want to know more. They maybe interested in taking us on as a project! I am so excited. The meeting on Wednesday is to iron out a few issues and try to get some sort of plan to get started. Majority of the funds raised at Reid's Benefit dinner will go towards Clear Day. The name came from an anagram of CLAY (Dani's little boy...see past photo) and REID...but we changed the 'I' to an 'A'.I will keep you all posted.
On Thursday we will go back to Brisbane for an appointment with Dr Steadman. Reids' Orthopaedic Surgeon. I am hoping to find out when we can have the frame removed. Once again I will keep you all up to date. I cannot thank you all enough for your support, love, phonecalls, letters and prayers....they seem to be working xxx
Reid is now walking a little more and for the first time in a very, very, long time he took himself to the toilet....I stood close by, but he got there all by himself and back to bed (after washing hands of course) all by himself. He was so proud of himself too.
He knows we have to go back to Brisbane tomorrow, and his only fear is the GCSF needle he has to have before we leave on Wednesday. Bloody Needles. But this needle is so important to the recovery from chemo, so I can't not fight for him not to have it. Its such a clever needle as it tells the bone marrow to start producing again and not to give up. In America each one of these injections costs close to $2000. Here in sunny Queensland this injection costs me $5!! Who says we have a rotten health system??? Reid has had to have 24 of these injections so far, 14 of which I had to draw up and give to him before his Stem cell harvest.
On Friday afternoon we get out of RCH and I will meet Dave at Blacksoil with Reid and then I will return to Brisbane for a meeting with Childhood Cancer Support. I came up with an idea a little while ago to start a charity that deals with granting carers of children with cancer a Time Out. I told the idea to a dear friend I have made since being at RCH and she came up with the name...Clear Day. After many hours Dani and I put together a profile, Anna (my very talented Artistic friend) designed a logo and we presented it to Childhood Cancer Support. They were impressed, and want to know more. They maybe interested in taking us on as a project! I am so excited. The meeting on Wednesday is to iron out a few issues and try to get some sort of plan to get started. Majority of the funds raised at Reid's Benefit dinner will go towards Clear Day. The name came from an anagram of CLAY (Dani's little boy...see past photo) and REID...but we changed the 'I' to an 'A'.I will keep you all posted.
On Thursday we will go back to Brisbane for an appointment with Dr Steadman. Reids' Orthopaedic Surgeon. I am hoping to find out when we can have the frame removed. Once again I will keep you all up to date. I cannot thank you all enough for your support, love, phonecalls, letters and prayers....they seem to be working xxx
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
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
Friday, December 21, 2007
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
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
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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