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....
Monday, February 25, 2008
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
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