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
Thursday, November 22, 2007
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
(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
Saturday, November 10, 2007
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.
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
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
Wednesday, October 31, 2007
Surgery Details
Reid got through his last lot of chemo really well. We got out of hospital on the Friday and had to go straight over to the Mater Hospital for another MRI. Dr Peter Steadman (Orthopedic Surgeon) wanted to see another scan before he was to make decisions on how we are going to get rid of the remaing Tumour.
Dave and Alex came down on Fiday nite and Alex stayed down Monday and Tuesday as Dave was to return for Dr Steadmans Appointment on Tuesday. She and Reid had slipped back into normal sibling conversation very quickly. We had also moved to a new abode at the Childhood Cancer Support Units in Bramston Tce so Reid and Alex now share a bunk bed and lots more space to play. We had been very happy at the Charles Wanstall Lodge but we felt that Reid needed to have as much interaction with other kids as possible so when a three bedroom unit became available, and we were notified, we took it and moved in last Thursday.
Tuesday we woke quite anxious, but eager to hear what the surgeon was to say. Our appointment was at 1.30pm at The Mater Hospital. We got there at 12.45!!
Dr Steadman was on time. We had only been in his office for 5mins and Reid was already asking if we could go! Dr Steadman had a look at Reids leg then said that he could go outside for a walk with Ninnie. Thank goodness for Mum or we wouldnt have been able to ask the zillions of questions we had written down in advance.
Bascially Dr Steadman said that Reids Tumour had shrunk considerably but it is still visible and the Tibia will have to be removed 3cm above and 3cm below the original tumour site. Luckily Reids Growth plates had not been affected by the tumour so Dr Richard Theile (a Plastic Surgeon) will take the Fibular from Reids Left leg and put it in place of the infected Tibia in his right leg. It will be screwed in place connected to blood vessels and should grow normally. Of all the evils this is a good option as we are not replacing the infected leg with a foreign object. Less chance for infection and no rejection. When we asked what about his left leg? Dr Steadman said that "God put fibulars in to be used as spare parts!" David and I were very happy with this. We were told that Reid will have considerable pain after the 8-10 hour op. He will also have a cast on both legs. His left leg cast will probably be able to be removed after two weeks and the one on his right will be there for three months and then replaced with a plastic brace to help him walk! Yay! Sounds like he will be walking close to March 08! Pretty good considering he hasnt walked since MAY 07! Reid will also commence chemo two weeks after surgery. Surgery will be done at the Wesley Hospital only because of the length of time it will take. He will be transferred to Royal Childrens Hospital if he needs to go to ICU after surgery. They dont have a childrens ICU facility at the Wesley.
I met with Dr Theille (Plastic Surgeon) today and he told me that this type of surgery has a 96% success rate. Reid will have a big scar on both his legs, and may lose some strenght in his left Big Toe, but other than this it should all be good.
Surgery is scheduled and booked for the 14th November...
Today Reid is not too good, his bloods are low and he is spitting a lot. We are due to have blood counts again on Saturday and Monday and another CT Scan next Tuesday to check the spot on his Right Lung. Lets hope we stay out of hospital this time and his bloods recover soon. I would really like to get Reid home for a break before surgery, and if this happens I will have some of his friends come to visit....he misses them all so much.
Dave and Alex came down on Fiday nite and Alex stayed down Monday and Tuesday as Dave was to return for Dr Steadmans Appointment on Tuesday. She and Reid had slipped back into normal sibling conversation very quickly. We had also moved to a new abode at the Childhood Cancer Support Units in Bramston Tce so Reid and Alex now share a bunk bed and lots more space to play. We had been very happy at the Charles Wanstall Lodge but we felt that Reid needed to have as much interaction with other kids as possible so when a three bedroom unit became available, and we were notified, we took it and moved in last Thursday.
Tuesday we woke quite anxious, but eager to hear what the surgeon was to say. Our appointment was at 1.30pm at The Mater Hospital. We got there at 12.45!!
Dr Steadman was on time. We had only been in his office for 5mins and Reid was already asking if we could go! Dr Steadman had a look at Reids leg then said that he could go outside for a walk with Ninnie. Thank goodness for Mum or we wouldnt have been able to ask the zillions of questions we had written down in advance.
Bascially Dr Steadman said that Reids Tumour had shrunk considerably but it is still visible and the Tibia will have to be removed 3cm above and 3cm below the original tumour site. Luckily Reids Growth plates had not been affected by the tumour so Dr Richard Theile (a Plastic Surgeon) will take the Fibular from Reids Left leg and put it in place of the infected Tibia in his right leg. It will be screwed in place connected to blood vessels and should grow normally. Of all the evils this is a good option as we are not replacing the infected leg with a foreign object. Less chance for infection and no rejection. When we asked what about his left leg? Dr Steadman said that "God put fibulars in to be used as spare parts!" David and I were very happy with this. We were told that Reid will have considerable pain after the 8-10 hour op. He will also have a cast on both legs. His left leg cast will probably be able to be removed after two weeks and the one on his right will be there for three months and then replaced with a plastic brace to help him walk! Yay! Sounds like he will be walking close to March 08! Pretty good considering he hasnt walked since MAY 07! Reid will also commence chemo two weeks after surgery. Surgery will be done at the Wesley Hospital only because of the length of time it will take. He will be transferred to Royal Childrens Hospital if he needs to go to ICU after surgery. They dont have a childrens ICU facility at the Wesley.
I met with Dr Theille (Plastic Surgeon) today and he told me that this type of surgery has a 96% success rate. Reid will have a big scar on both his legs, and may lose some strenght in his left Big Toe, but other than this it should all be good.
Surgery is scheduled and booked for the 14th November...
Today Reid is not too good, his bloods are low and he is spitting a lot. We are due to have blood counts again on Saturday and Monday and another CT Scan next Tuesday to check the spot on his Right Lung. Lets hope we stay out of hospital this time and his bloods recover soon. I would really like to get Reid home for a break before surgery, and if this happens I will have some of his friends come to visit....he misses them all so much.
Wednesday, October 17, 2007
Rounding the corner to Cycle 6
Cycle 5 has proven to be as eventful and dramatic as all the others. We started off the chemo for cycle 5 of VIDE on the 1st of this month. Reid's weight was excellent and we were looking to having a quiet 21 days. Chemo finished day three as per the other cycles and we got out of hospital Day 4. Over these days Reid handled the chemo well and only vomited a couple of times. He didnt eat for the entire hospital stay but seemed to tolerate his Nasal Gastric tube feeds on a lower rate. However we were to find out in a weeks time that he had lost 2 kgs.
On Friday the 5th October a very special girlfriend of mine organised a lunch for me to see some of my wonderful friends, not wanting to harness me into something Rach made sure everything was ok on Friday Morning before confirming the booking with the girls. I had a great time and returned to the unit around 8pm! (Now thats a LUNCH!) Mum stayed with Reid and some of the girls went round to have dinner with Mum...so she didn't miss out either!! I woke on Saturday with a cold, so Mum kicked me out! I went back to Toowoomba for three days. Dave stayed with Mum and Reid and Alex came back from Taroom on Sunday so it was great to see her. She had a wonderful time with her cousins and all the flies!!!
Reid's bloods bottomed out over the next 10 days and he had to have several transfusions to get the counts up. By day 11 his platelets were pretty low and at 5.30pm he got a terrible nose bleed. We had to go up to emergency and a platelets transfusion was given and we were admitted into the new Oncology Ward "Turner". Reid was the very first patient in Bed 4! We spent the next three days fighting Mucositis, but this time (without the Morphine) and waiting for his blood counts to come up. We had two more blood transfusions before we were allowed out on Sunday.
Monday we went up to Banksia Outpatients for anti-Biotics. On Thursday when Reid spiked a temp with his bleeding nose cultures were taken, and by Sunday a bacteria had grown. So to cover all bases we had to have anti-biotics daily. We saw Dr Tim and he said we could go home. YAY!!!!! Reid had not been home since August! He was so excited. I got back to the unit , packed and we arrived back in Toowoomba at 7:30pm! Not only was alex and David there but Malcom (David's dad) too. So good to see Pa!!
We had to go up daily to St Vincents to have the Anti biotics. So at 8:30am Reid and I made what was to become a regular pilgramage to St Vincents. Because they were not prepares for our visit, it took some time and we got back to home at 11.30am. I changed into home clothes and generally got to doing the all the things I wanted to. Silly things like gardening, tidying the tupperware cupboard, reading my emails, and writing this blog. Reid played with his toys, in the sandpit on the swings, watched TV and played playstation....Alex came home from school and then I got a phonecall from RCH .......
The infection in Reids Blood cultures had come back as a Gram Negative which meant it was bad. Reid was SO WELL!!! However they needed us to return to Brisbane tonight and have his central Line removed and a new PICC line was to be inserterted into his arm for his anti biotics this was to be done 10:30am Wed under General anaesethtic. After lots of tears, swearing and more packing, Reid and I got in the car and drove back to RCH. We hadnt even been home 24 hours. Alex David and Malcolm were devastated. Not to mention Reid...he spent most of the trip trying to work out how to run away in his wheelchair!!
The op went well and Reid recovered very quickly. We were allowed out of Banksia at 4pm and we drove straight back to Toowoomba.
So thats where we are now. We have to go up to St Vincents three times a day for Anti-biotics but at least we are at home. The girls (nurses) up there have been amazing. The senior ones even working for us on their days off so we dont have to be inpatients! Absolute Saints!
We head back to Bris on Saturday and Chemo starts on Tuesday. I will keep you posted. xxx
On Friday the 5th October a very special girlfriend of mine organised a lunch for me to see some of my wonderful friends, not wanting to harness me into something Rach made sure everything was ok on Friday Morning before confirming the booking with the girls. I had a great time and returned to the unit around 8pm! (Now thats a LUNCH!) Mum stayed with Reid and some of the girls went round to have dinner with Mum...so she didn't miss out either!! I woke on Saturday with a cold, so Mum kicked me out! I went back to Toowoomba for three days. Dave stayed with Mum and Reid and Alex came back from Taroom on Sunday so it was great to see her. She had a wonderful time with her cousins and all the flies!!!
Reid's bloods bottomed out over the next 10 days and he had to have several transfusions to get the counts up. By day 11 his platelets were pretty low and at 5.30pm he got a terrible nose bleed. We had to go up to emergency and a platelets transfusion was given and we were admitted into the new Oncology Ward "Turner". Reid was the very first patient in Bed 4! We spent the next three days fighting Mucositis, but this time (without the Morphine) and waiting for his blood counts to come up. We had two more blood transfusions before we were allowed out on Sunday.
Monday we went up to Banksia Outpatients for anti-Biotics. On Thursday when Reid spiked a temp with his bleeding nose cultures were taken, and by Sunday a bacteria had grown. So to cover all bases we had to have anti-biotics daily. We saw Dr Tim and he said we could go home. YAY!!!!! Reid had not been home since August! He was so excited. I got back to the unit , packed and we arrived back in Toowoomba at 7:30pm! Not only was alex and David there but Malcom (David's dad) too. So good to see Pa!!
We had to go up daily to St Vincents to have the Anti biotics. So at 8:30am Reid and I made what was to become a regular pilgramage to St Vincents. Because they were not prepares for our visit, it took some time and we got back to home at 11.30am. I changed into home clothes and generally got to doing the all the things I wanted to. Silly things like gardening, tidying the tupperware cupboard, reading my emails, and writing this blog. Reid played with his toys, in the sandpit on the swings, watched TV and played playstation....Alex came home from school and then I got a phonecall from RCH .......
The infection in Reids Blood cultures had come back as a Gram Negative which meant it was bad. Reid was SO WELL!!! However they needed us to return to Brisbane tonight and have his central Line removed and a new PICC line was to be inserterted into his arm for his anti biotics this was to be done 10:30am Wed under General anaesethtic. After lots of tears, swearing and more packing, Reid and I got in the car and drove back to RCH. We hadnt even been home 24 hours. Alex David and Malcolm were devastated. Not to mention Reid...he spent most of the trip trying to work out how to run away in his wheelchair!!
The op went well and Reid recovered very quickly. We were allowed out of Banksia at 4pm and we drove straight back to Toowoomba.
So thats where we are now. We have to go up to St Vincents three times a day for Anti-biotics but at least we are at home. The girls (nurses) up there have been amazing. The senior ones even working for us on their days off so we dont have to be inpatients! Absolute Saints!
We head back to Bris on Saturday and Chemo starts on Tuesday. I will keep you posted. xxx
Sunday, September 30, 2007
A Month has been and GONE!
Today (1st October 2007) Reid commences Cycle 5 of his chemotherapy. So much has happened over the past month and I am sorry that I have not kept this page up to date. No doubt though most of you reading will have heard all the ups and downs we have experienced recently but just to refresh your memory (and mine) I will go through it all.
We returned to RBH on the 30th August for a chest x-ray and blood tests, then at 9am on the 31st August we commenced cycle 4 of chemo. As you know it was thought Reid had Chickenpox...but after three Doctors inspected what was left of his spots it was confirmed that he did NOT have Chicken Pox. Dr tim Hassall said it was more likely Coxsaci Virus...Hand Foot and Mouth! I was filled with a mixture of releif and anger...and deciced to deal with these feelings later.
Reid was really well during cycle 4 and Mum and I were very surprised at how well he handled the chemo. River fire was on and our room had a perfect view over the Brisbane skyline for all the fireworks and the BIG F1-11 Dump and burn! It was planned to do a Stem cell Harvest after this cycle so Reid had a small insuflon (like a small canula) inserted into his leg so I could give him GCSF injections daily for the next week. This was a harrowing experience and I seemed to get just as upset as he did. However we did get better and handled the whole thing in our stride....eventually. On the 9th August we were admitted into Hospital in preparation for the Vascath insertion. This is a small tube that was to be inserteted into Reid's neck and is used to filter his blood for Stem cells. However Reid spiked a temp of 40 degrees and over the next few days developed extreme Mucositis in his stomache, and osephargus. So once again we missed the opportunity to have a Stem Cell Harvest. To add a bit more drama to all the proceedings, Reids blood cultures grew a small Bacteria so if they had gone ahead with the Stem Cell Harvest then they would have had to through all the cells away as they would have been contaminated. We got out of Hospital Saturday 15th August.
16th August - Reid had an Echo cardiogram on his Heart
We now had to go to Plan D.. as Dr Tim said meant "Don't Worry!. The insuflon was inserted again and Reid and I commenced another four days of GCSF injections. (These injections are used to stimulate the Bone Marrow to producing Stem Cells). We started these on Friday 21st.
Monday 24th Reid had a GFR test, this is a kidney test - All wen Well.
Tuesday 25th Reid had a Bone Marrow Harvest under General anesthetic (Plan D). We were in Day surgery and they withdrew 15% of Reids Blood supply from his Bone Marrow in his Pelvis, then spun the blood to seperate his stem cells from the red blood cells then they gave him back his Red blood cells. This took a whole day, but Reid handled it really well and the Stem Cell count was very high. Lissa, Sam ans Sophie arrived mid afternoon, thank goodness as this was Reid's main concern when he came out of the anaesthtic. We went into hospital at 7am and we got out at 6.30pm.
Wednesday 26th Reid had a CT Scan on his Lungs and a MRI on his Leg.
Thursday 27th-We didnt go to the hospital for a whole DAY!!
Friday 28th - Lissa and the kids and Dave and I went up to see Dr Tim for the results of all the tests.
1.GFR went well Reid has no probs with his Kidneys
2.Echo Cardigram went well - no probs with his heart
3.MRI showed continued shrinkage of the tumour in Reid's leg leaving calcification of the infected area. We will meet with Dr Peter Steadman (the Orthopedic Surgeon) on the 25th October to discuss what we will need to do with this area. But the very good news is the cancer is reducing and is now almost gone!
4. CT scan on Reid's lungs showed another small spot on his Right side. This is not good news. It could be bacteria from all the infections Reid has had over the past month or it could be a metastitis (Secondary Cancer). We may not know. The next cycle of chemo will get rid of it but what it means is that Reid may now have to have Radiation on his lungs down the track. This is a proceedure I am petrified of, but we need to be sure that we get all the cancer, and if Radiation is going to be our solution then we will do it. I was devastated with this news.
Mum and Dad arrived at the unit as soon as we got home and I went for a walk to clear my head. Reid was just so excited to see Barba and Ninnie that he didnt notice my anxiety. I think I cried the hardest I have ever have...if that is possible.
The next day I promised myself not to cry at all and woke with a new positive attitude. I got the family motivated and organised and we all went out on the boat for the day to celebrate Mum and Dads 40th wedding anniversary. We motored over to Peel Island soaking up the sun, and the perfect weather. It was a wonderful day.
Lissa, Luke, Sam, Sophie and Alex all left for Taroom Syunday Morning and Dad headed back to Armidale this morning. Now Mum and I are about to start the next whirlwind. Reid will have another CT scan on his lungs in 5 weeks and a decision will be made then as to how we treat them. Thank you to everyone who is following us and riding these bumps with us. I get so sad sometimes but knowing that I have so much support and love only a phonecall away means an enourmous amount. One day at a time....
We returned to RBH on the 30th August for a chest x-ray and blood tests, then at 9am on the 31st August we commenced cycle 4 of chemo. As you know it was thought Reid had Chickenpox...but after three Doctors inspected what was left of his spots it was confirmed that he did NOT have Chicken Pox. Dr tim Hassall said it was more likely Coxsaci Virus...Hand Foot and Mouth! I was filled with a mixture of releif and anger...and deciced to deal with these feelings later.
Reid was really well during cycle 4 and Mum and I were very surprised at how well he handled the chemo. River fire was on and our room had a perfect view over the Brisbane skyline for all the fireworks and the BIG F1-11 Dump and burn! It was planned to do a Stem cell Harvest after this cycle so Reid had a small insuflon (like a small canula) inserted into his leg so I could give him GCSF injections daily for the next week. This was a harrowing experience and I seemed to get just as upset as he did. However we did get better and handled the whole thing in our stride....eventually. On the 9th August we were admitted into Hospital in preparation for the Vascath insertion. This is a small tube that was to be inserteted into Reid's neck and is used to filter his blood for Stem cells. However Reid spiked a temp of 40 degrees and over the next few days developed extreme Mucositis in his stomache, and osephargus. So once again we missed the opportunity to have a Stem Cell Harvest. To add a bit more drama to all the proceedings, Reids blood cultures grew a small Bacteria so if they had gone ahead with the Stem Cell Harvest then they would have had to through all the cells away as they would have been contaminated. We got out of Hospital Saturday 15th August.
16th August - Reid had an Echo cardiogram on his Heart
We now had to go to Plan D.. as Dr Tim said meant "Don't Worry!. The insuflon was inserted again and Reid and I commenced another four days of GCSF injections. (These injections are used to stimulate the Bone Marrow to producing Stem Cells). We started these on Friday 21st.
Monday 24th Reid had a GFR test, this is a kidney test - All wen Well.
Tuesday 25th Reid had a Bone Marrow Harvest under General anesthetic (Plan D). We were in Day surgery and they withdrew 15% of Reids Blood supply from his Bone Marrow in his Pelvis, then spun the blood to seperate his stem cells from the red blood cells then they gave him back his Red blood cells. This took a whole day, but Reid handled it really well and the Stem Cell count was very high. Lissa, Sam ans Sophie arrived mid afternoon, thank goodness as this was Reid's main concern when he came out of the anaesthtic. We went into hospital at 7am and we got out at 6.30pm.
Wednesday 26th Reid had a CT Scan on his Lungs and a MRI on his Leg.
Thursday 27th-We didnt go to the hospital for a whole DAY!!
Friday 28th - Lissa and the kids and Dave and I went up to see Dr Tim for the results of all the tests.
1.GFR went well Reid has no probs with his Kidneys
2.Echo Cardigram went well - no probs with his heart
3.MRI showed continued shrinkage of the tumour in Reid's leg leaving calcification of the infected area. We will meet with Dr Peter Steadman (the Orthopedic Surgeon) on the 25th October to discuss what we will need to do with this area. But the very good news is the cancer is reducing and is now almost gone!
4. CT scan on Reid's lungs showed another small spot on his Right side. This is not good news. It could be bacteria from all the infections Reid has had over the past month or it could be a metastitis (Secondary Cancer). We may not know. The next cycle of chemo will get rid of it but what it means is that Reid may now have to have Radiation on his lungs down the track. This is a proceedure I am petrified of, but we need to be sure that we get all the cancer, and if Radiation is going to be our solution then we will do it. I was devastated with this news.
Mum and Dad arrived at the unit as soon as we got home and I went for a walk to clear my head. Reid was just so excited to see Barba and Ninnie that he didnt notice my anxiety. I think I cried the hardest I have ever have...if that is possible.
The next day I promised myself not to cry at all and woke with a new positive attitude. I got the family motivated and organised and we all went out on the boat for the day to celebrate Mum and Dads 40th wedding anniversary. We motored over to Peel Island soaking up the sun, and the perfect weather. It was a wonderful day.
Lissa, Luke, Sam, Sophie and Alex all left for Taroom Syunday Morning and Dad headed back to Armidale this morning. Now Mum and I are about to start the next whirlwind. Reid will have another CT scan on his lungs in 5 weeks and a decision will be made then as to how we treat them. Thank you to everyone who is following us and riding these bumps with us. I get so sad sometimes but knowing that I have so much support and love only a phonecall away means an enourmous amount. One day at a time....
Tuesday, August 28, 2007
CHICKEN POX! -
Chicken Pox must be the most potent of viruses. Reid was in contact with a little boy for one and half hours on the 23rd July. It was found later that night that this little boy had chicken pox. Reid being on Chemotherapy, had to have two enormous Gammagobulin injections in his bottom within 72 hours of reported contact. This was done 12pm on the 24th July. Reid then went to Brisbane and contacted Influenza A. He was barraged with three types of anti biotics intraveneously for five days. When he got out of hospital he continued to take 500mg of (Valtrex) another anti viral anti biotic three times a day for 10 days. He then returned to hospital commenced Chemotherapy. Three days of being filled with highly toxic chemo drugs which made all his eyelashes fall out and lose another kilo in weight. Not only this but Reid then had to suffer another five days in hospital trying to rid his body of Mucositis (Ulcers in his mouth and throat) caused by the chemotherapy. He had another dose of several anti biotics over this time. Finally on the 20th August Reid had got through the 28 days of isolation due to his Chicken Pox (and Influenza A). On the 21st August we were allowed to go home! On the 23rd August we were admitted into St Vincents Hospital in Toowoomba with High Temps and at 12am on the 24th August ( Day 32 since contact) Reid started to break out in Chicken Pox!
People who are not on chemotherapy only have a gestation period of 21 days, when you are on chemo you have to stay isolated for 28 days. Until recently, Chicken Pox is highly potent to Chemo kids. With the introduction of new anti biotics (namely Acyclovia) fatalities are very few with chemo kids contracting chicken pox. Sadly this was not the case not so long ago. So you can say that Reid was lucky!!??! Reid’s chicken pox was only mild, and it looks like we will be able to line up for more chemo as scheduled this Friday.
YAY..........shit
David took the opportunity to have the Nose tube inserted during this hospital visit. This was a procedure that I seemed to continue to put off. Reid dreaded it, Mum dreaded it and I most of all,.. dreaded it. But thankfully David stepped in and took control out of my hands and was with him when he had it done. Dad wanted it done as he could see that our little boy was wasting away. Within three days of continuous feeds, Reid looks like a different kid. He is hungry again. You would think that by putting food into an empty tummy you would never want to eat again; but it has the opposite effect. Reid was probably at the stage when the mind actually forgets what it feels like to be hungry, so by having the gastric juices moving again this feeling of new energy and vitality was good so it triggers the mind to want to eat again. I can honestly say that I have seen Reid eat more in the last four days that he has in the entire 3 months! He looks so good (even without the hair and eyelashes!). He is so much happier with so much more energy. And after the past month he has had….thank you God. Something good had to come out of this…..tbc.PS we got out of hospital today (28th August 2007).
People who are not on chemotherapy only have a gestation period of 21 days, when you are on chemo you have to stay isolated for 28 days. Until recently, Chicken Pox is highly potent to Chemo kids. With the introduction of new anti biotics (namely Acyclovia) fatalities are very few with chemo kids contracting chicken pox. Sadly this was not the case not so long ago. So you can say that Reid was lucky!!??! Reid’s chicken pox was only mild, and it looks like we will be able to line up for more chemo as scheduled this Friday.
YAY..........shit
David took the opportunity to have the Nose tube inserted during this hospital visit. This was a procedure that I seemed to continue to put off. Reid dreaded it, Mum dreaded it and I most of all,.. dreaded it. But thankfully David stepped in and took control out of my hands and was with him when he had it done. Dad wanted it done as he could see that our little boy was wasting away. Within three days of continuous feeds, Reid looks like a different kid. He is hungry again. You would think that by putting food into an empty tummy you would never want to eat again; but it has the opposite effect. Reid was probably at the stage when the mind actually forgets what it feels like to be hungry, so by having the gastric juices moving again this feeling of new energy and vitality was good so it triggers the mind to want to eat again. I can honestly say that I have seen Reid eat more in the last four days that he has in the entire 3 months! He looks so good (even without the hair and eyelashes!). He is so much happier with so much more energy. And after the past month he has had….thank you God. Something good had to come out of this…..tbc.PS we got out of hospital today (28th August 2007).
Tuesday, August 21, 2007
8 Days Home...I Hope!
Reid and I arrived back home yesterday (21.08.07) at around 2pm. Reid was last home July 25th. In the past month he has been in and out of hospital three times for three seperate things. The first being Influenza A, the second being Chemo and the third for Mucositis. Over the past month Reid has had three blood transfusions, one platelets transfusion, countless Anti-biotics, litres of fluids, toxic chemotherapy, and mostly all in isolation as we had been in contact with Chicken Pox so we were a threat for 28 days!
Reid lost weight again after this lot of chemo and a dietitian spoke to me at length about getting the "Tube". This is a feeding tube inserted into the kids noses and down into their stomaches so that they can be fed high protein/fat meals regularly. On the good side all Reids Oral Meds can be given via the tube so he doesnt have to worry about yucky medicines anymore. Looking at Reid we can see that he needs this, but he is absolutely petrified of the procedure. I actually think he would prefer 100 needles in preference to getting this done. I enquired about going under anaethetic for it but this is rarely done unless he has some surgery scheduled. Anyway, no doubt it will happen when we get back to Brisbane.
I am writing this whilst monitoring Reid's temp as it seems to be up a little. We are told that if the temp goes to 38 or above on 2 seperate occasions we are to go straight to emergency. Perhaps his little body is just adjusting itself to Toowoomba!
Today is a little cool and windy but not as bad as last time we were home, I am so paranoid of germs so I am keeping Reid pretty close to home for this stay so we have a clear run for cycle 4 scheduled for the 31st August.
Mum will come back on Wednesday the 29th and then we will head down to Brisbane on the 30th. Reid needs a chest x-ray, and blood tests done so we can proceed on the Friday.
After this lot of chemo we will have the Stem Cell Harvest, Another set of scans for Disease Evaluation, and a meeting with the Orthopedic Surgeon to discuss the type of surgery Reid will need in November. So we have a big month in September. I will keep you posted...love all your messages! thanx xxx
Reid lost weight again after this lot of chemo and a dietitian spoke to me at length about getting the "Tube". This is a feeding tube inserted into the kids noses and down into their stomaches so that they can be fed high protein/fat meals regularly. On the good side all Reids Oral Meds can be given via the tube so he doesnt have to worry about yucky medicines anymore. Looking at Reid we can see that he needs this, but he is absolutely petrified of the procedure. I actually think he would prefer 100 needles in preference to getting this done. I enquired about going under anaethetic for it but this is rarely done unless he has some surgery scheduled. Anyway, no doubt it will happen when we get back to Brisbane.
I am writing this whilst monitoring Reid's temp as it seems to be up a little. We are told that if the temp goes to 38 or above on 2 seperate occasions we are to go straight to emergency. Perhaps his little body is just adjusting itself to Toowoomba!
Today is a little cool and windy but not as bad as last time we were home, I am so paranoid of germs so I am keeping Reid pretty close to home for this stay so we have a clear run for cycle 4 scheduled for the 31st August.
Mum will come back on Wednesday the 29th and then we will head down to Brisbane on the 30th. Reid needs a chest x-ray, and blood tests done so we can proceed on the Friday.
After this lot of chemo we will have the Stem Cell Harvest, Another set of scans for Disease Evaluation, and a meeting with the Orthopedic Surgeon to discuss the type of surgery Reid will need in November. So we have a big month in September. I will keep you posted...love all your messages! thanx xxx
Thursday, August 16, 2007
17th August 2007
I am updating this page from The Wonder Factory at the Royal Childrens Hospital in Brisbane. Reid now has Mucositis. Which is the inflamation of the lining in the oesophargus and mouth caused by chemotherapy. He was also in need of PAC Cells (Red Blood Cells) and Platelets. And on top of that, due to the ulcers (Mucositis) he was dehydrated. So we were readmitted yesterday and will be in for the next couple of days.
Reids 4th lot of chemo is now scheduled for around the 29th August. We are hoping to get home for a brief stay before this commences. Dave and Alex and Dad are coming down tonite and the Mum and Dad will head off tomorrow...I think!
Reid is pretty low at the moment, and is missing his friends, his cousins, his home and believe it or not....his sister!
We got the official report from the MRI done 16th July and it was very positive. Reid's tumour is not in the growth plates and there seems to be only one spot. The bone marrow in his knee is also clear. We will have another MRI after the fourth lot of chemo. We will also have the stem cell harvest (put off from our contact with Chicken Pox) and we will also meet with the Orthopedic Surgeon to decide on what type of surgery Reid will need.
Now that I know that I can acess the computer here at the hospital, I will keep the page up to date. One day at a time......(I just wish I could live by that phrase!)
Reids 4th lot of chemo is now scheduled for around the 29th August. We are hoping to get home for a brief stay before this commences. Dave and Alex and Dad are coming down tonite and the Mum and Dad will head off tomorrow...I think!
Reid is pretty low at the moment, and is missing his friends, his cousins, his home and believe it or not....his sister!
We got the official report from the MRI done 16th July and it was very positive. Reid's tumour is not in the growth plates and there seems to be only one spot. The bone marrow in his knee is also clear. We will have another MRI after the fourth lot of chemo. We will also have the stem cell harvest (put off from our contact with Chicken Pox) and we will also meet with the Orthopedic Surgeon to decide on what type of surgery Reid will need.
Now that I know that I can acess the computer here at the hospital, I will keep the page up to date. One day at a time......(I just wish I could live by that phrase!)
Tuesday, July 31, 2007
1st August - Back Again!
Reid got out of hospital on Monday, and as you know, I have been at home in Toowoomba, so I haven't seen Reid since last Wednesday. Today Mum and Aunty Gwen took Reid up to Banksia Outpatients and he had some blood tests,his central line dressing changed and a nose suck thingo. This is a test where they put this thing up Reids' nose and turn on a pump, then they test the stuff that comes out of his nose and it tells them whether or not he still has the flu or not. Yucko! It must have been ok, because now the only concern is the fact that 10 days ago Reid was in contact with Chicken Pox, and even though he had the inmunoglobulin injections he could still get the virus, so after 10 days of being in contact he may now be infectious. So he now has to take a course of tablets to make sure that if he does have it,he won't get it. (Does that make sense?) All going well, we start chemo on Monday, but due to the Chicken pox we will have to have our treatment in Patterson ward (the infectious diseases ward) as we cant infect any other children...just in case....we do have it....holy smokes. Nothing is left to chance.
RCH had a teddy bears picnic today, and Reid had his photo taken with Wags the Dog and Dorothy the Dinosaur. It was filmed by channel seven so he maybe on the news tonight! I will head down to Brisbane tomorrow and Mum will head out to my sister's for a much needed break. She and Aunty Gwen have been fabulous. I don't know what I would have done if I didn't have them. Reid is really well, so we may even get a visit to the boat this weekend all going well. But we wont be coming back to Toowoomba until it warms up...I'm not going to risk the flu again!
RCH had a teddy bears picnic today, and Reid had his photo taken with Wags the Dog and Dorothy the Dinosaur. It was filmed by channel seven so he maybe on the news tonight! I will head down to Brisbane tomorrow and Mum will head out to my sister's for a much needed break. She and Aunty Gwen have been fabulous. I don't know what I would have done if I didn't have them. Reid is really well, so we may even get a visit to the boat this weekend all going well. But we wont be coming back to Toowoomba until it warms up...I'm not going to risk the flu again!
Sunday, July 29, 2007
Sunday 29th July-2 steps forward 4steps back
I am at home. Reid is in hospital recovering from some flu he and I got wednesday night. After we left here Wednesday afternoon we arrived in Brisbane and Reid was very quiet. I took his temp and it was 38.6. After ringing Banksia, we took reid straight to emergency. We were admitted to Banksia and Mum stayed the night with him as I was starting to feel really sick too. Cutting a long story short, turned out Reid had influenza, chemo was put off, and due to our contact with chicken pox we will not be doing the stem cell harvest after this lot of chemo either. when chemo starts is a mystery. Alex isnt well either so David brought me home to get better and take Ally pal to the doctor tomorrow. I am now on anti biotics and can feel them working already. Hopefully Mum and Reid will get out tomorrow and have a few days at the unit before chemo starts. Bloody flu. I hope Mum doesn't get it. My aunt and cousin are sharing the load with Mum and David had the night in hospital with Reid last night to give Mum a break. I just need to get better so I can go back. I haven't seen Reid since Wednesday Night....
Tuesday, July 24, 2007
Heading Back
Reid and I and Mum will be heading back to Brisbane late this afternoon. We have had the best time whilst we have been at home. Almost two weeks!! Reid went to school, caught up with all his little friends, I saw so many of my wonderful friends, we had lots of quality time with Alex and David; and almost started to feel normal again.
Reid unfortunatley came into contact with Chicken Pox, so had to have the imunoglobulin injection in his bottom. But we got word of it early so everthing should be ok. I feel so sad for the family and the little boy who is now fighting the infection.
I went to a fund raiser whilst I was home. It was a rather grand gala event held at the Empire Theatre Church Hall. A beautiful night, black tie, masks, ball gowns, fabulous music, great food and a wonderful cause. All funds raised went to the Childhood Cancer Support Foundation. A group who supports kids and their families from the bush and rural communities after they have been diagnosed. I did find the night very confronting, and in times past would have loved being part of this event, this time I sort of felt so so sad. However I do believe that the night was a huge sucess and lots of much needed funds were raised for a fantastic cause.
Tomorrow Reid will begin his third lot of chemo. We will be in hospital for about a week. At the end of that week he will then begin a course of GCSF injections. These injections encourage cell growth so at the end of this course (7 days) Reid will then undergo a Stem Cell Harvest. I'm not too sure how this is done but Reid will be attached to a machine which will seperate his blood to collect stem cells. This harvest will then be stored for Reid in case he needs a boost after his surgery. At this stage Surgery should be late October.
Reid has been really well the entire time home. He has gained weight (thanks to his staple diet of Steak and Chips), fought with his sister, messed up his room, and loved seeing and playing with his little friends. How lucky we are to have these days this time. Lets hope and pray that all our times at home will be fun ones.
Thank you to everyone who has travelled this journey so far with us. Your constant phone calls, letters, love and smiles are always appreciated.
The year ones at Mater Dei with help from the Mums and teachers made this most beautiful quilt (see pic) for Reid to take back to hospital with him. Each student and teacher drew Reid a picture, and the Mum's then sewd them all together. This will certainly be a much welcomed change to the Blue Queensland Health Quilts on his bed this time. thank you xxx
Reid unfortunatley came into contact with Chicken Pox, so had to have the imunoglobulin injection in his bottom. But we got word of it early so everthing should be ok. I feel so sad for the family and the little boy who is now fighting the infection.
I went to a fund raiser whilst I was home. It was a rather grand gala event held at the Empire Theatre Church Hall. A beautiful night, black tie, masks, ball gowns, fabulous music, great food and a wonderful cause. All funds raised went to the Childhood Cancer Support Foundation. A group who supports kids and their families from the bush and rural communities after they have been diagnosed. I did find the night very confronting, and in times past would have loved being part of this event, this time I sort of felt so so sad. However I do believe that the night was a huge sucess and lots of much needed funds were raised for a fantastic cause.
Tomorrow Reid will begin his third lot of chemo. We will be in hospital for about a week. At the end of that week he will then begin a course of GCSF injections. These injections encourage cell growth so at the end of this course (7 days) Reid will then undergo a Stem Cell Harvest. I'm not too sure how this is done but Reid will be attached to a machine which will seperate his blood to collect stem cells. This harvest will then be stored for Reid in case he needs a boost after his surgery. At this stage Surgery should be late October.
Reid has been really well the entire time home. He has gained weight (thanks to his staple diet of Steak and Chips), fought with his sister, messed up his room, and loved seeing and playing with his little friends. How lucky we are to have these days this time. Lets hope and pray that all our times at home will be fun ones.
Thank you to everyone who has travelled this journey so far with us. Your constant phone calls, letters, love and smiles are always appreciated.
The year ones at Mater Dei with help from the Mums and teachers made this most beautiful quilt (see pic) for Reid to take back to hospital with him. Each student and teacher drew Reid a picture, and the Mum's then sewd them all together. This will certainly be a much welcomed change to the Blue Queensland Health Quilts on his bed this time. thank you xxx
Monday, July 16, 2007
Captain Chemo Is Doing His Job!
Before I fill you all in on the great news from today, apparently I got a couple of things wrong in my last Blog. Reid is only six and his first chemo was on the 8th June not July!
Today was long with lots of tests. But it was all worth it. His MRI showed that the tumour is reducing so the chemo is working. Apparently sometimes it doesn't. The more time I spend in this environment the more atuned I am becoming to the medical world...watch out Greys Anatomy!
We also met a fellow cancer beater, Amy L. today. Amy is a14 year old girl who also has Ewings. She has the same Oncologist and Orthopedic Surgeon as us. Her tumour was found on her pelvis. She has completed her pre surgery chemo and her surgery. All went really well. She lost a large part of her pelvis and it has been rebuilt using her left femur and titanium. The special thing about Amy is she holds 10 national titles for schoolgirl swimming! She is onto her second block of post surgery chemo and will be back in the pool in December!!!
Reids Bloods were very good today too, so we are hoping a venture back to school maybe on the cards this week....as long as there isn't any chickenpox outbreaks!....we are due back in Brisbane to start our next block of chemo Thursday 26th July. ....tbc...
Today was long with lots of tests. But it was all worth it. His MRI showed that the tumour is reducing so the chemo is working. Apparently sometimes it doesn't. The more time I spend in this environment the more atuned I am becoming to the medical world...watch out Greys Anatomy!
We also met a fellow cancer beater, Amy L. today. Amy is a14 year old girl who also has Ewings. She has the same Oncologist and Orthopedic Surgeon as us. Her tumour was found on her pelvis. She has completed her pre surgery chemo and her surgery. All went really well. She lost a large part of her pelvis and it has been rebuilt using her left femur and titanium. The special thing about Amy is she holds 10 national titles for schoolgirl swimming! She is onto her second block of post surgery chemo and will be back in the pool in December!!!
Reids Bloods were very good today too, so we are hoping a venture back to school maybe on the cards this week....as long as there isn't any chickenpox outbreaks!....we are due back in Brisbane to start our next block of chemo Thursday 26th July. ....tbc...
Saturday, July 14, 2007
Sunday July 15th 2007
I am writing this first entry, knowing and remembering wonderful thoughts about my Mother-in-law who sadly passed away this day two years ago. Oh if only she could be here with David and I now to help us through this awful disease our Son (her Grandson) has.
Reid, is now six and has completed two blocks of chemotherapy to help him fight Ewings Sarcoma in his right Tibia.
Our little boy is a very busy little man who often met me at the fron tgate at school dragging his school port head down saying"I'm sorry Mum but I got two Time Outs today...I didn't mean to talk when Mrs Coman was talking, I just didn't hear her", or "I didnt mean to spit water on the girls at Lunch time" etc etc. Occasionally he would be limping and sometimes mention to me that his leg hurt. It wasn't till Mum took the kids and I to Sydney during the easter Holidays this year that Reid was hit with his first major pain in his right leg. The pain travelled down his leg to the arch in his foot. I rubbed and rocked and prayed that the pain would go away. It did. This pain only resurfaced occasionally and not as dramatically and it seemed to swap limbs so I wrote it off to be "Growing Pains". Reid is a very tall and skinny kid with plenty of energy, and it was thought that this type of pain is quite common among boys his age. It wasn't until Reid ran his Fun Run at school on Thursday 17th May that david and I were a little alarmed that he limped the entire 300m around the oval. After checking his shoes at the end of the race and emptying the contents, (rocks, bark, and dirt) I was sure was the cause of the limping. He did say his leg was sore, and when I checked it looked ok. That afternoon he was running again. Saturday 19th Reid spent the day riding his bike but complained of a sore leg most of the day. I finally looked at the leg 7pm that night after a day of running to Nettball and birthday parties, doing the groceries etc. His leg looked considerably larger than his left leg. David and I thought we would sleep on it and if it was still swollen in the morning we would take Reid straight up to St Vincents Emergency.
Basically this was the start of this Roller coaster ride. We had an x-ray and the Doctor treating Reid was alarmed to say the least. He admitted us into hospital and called the Orthopedic surgeon on call to come and reveiw Reid's x-ray. He was alarmed also and told us that Reid would need an MRI in the morning. The MRI showed a malignant growth on the right Tibia and was definatley some form of cancer. We were sent to Royal Childrens Hospital in Brisbane immediately. We had time to go home pack and say good bye to Alexandra, organise someone to pick her up and drive to Brisbane. We were to meet Dr Tim Hassal in the Oncology Outpatients ward.
The following week Reid was scanned and rescanned, poked and bi-opsied. On Friday May 25th we were told the outcomes of all these tests. Reid has a 8cm Ewings Sarcoma on his Right leg. This type of cancer effects the bone and tissues and metatisies quickly. There is also a small spot on Reids Lower Left Lung and he will need this removed and checked.
After another 10 days in and out of hospital we were told that The spot on Reid's lung was not cancer and his Bone Marrow is not infected with cancers. This is very good news, however our oncologist made it very clear that this did not clear the lung, as the spot had to be something and he would be watching Reid's lungs very closely. I was very happy to hear this. This meant to me that Dr Tim was not going to look under every stone but he was going to look twice or even more.
Reid commenced his first chemo Friday 8th May. This made him very sick and he did not eat for the five days in hospital. Being a skinny kid, eating is a priority to keep up his strength. He asked Mum for a Steak early morning of day 6. Each block of chemo is 21 days long and Reid is to have six blocks before surgery.
Which brings us to today. I have condensed the past eight weeks to fill you in. Reid turned 7 on the 14th June (the day we got out of hospital after a lung biopsy and his first lot of chemo). There is a lot of other gorry stuff that our poor little man had to go through but he is doing well and looking at the site of the tumour I can see a difference. The swelling has reduced and Reid is putting on weight. On Monday 16th July we will have (amongst other tests) "Disease Evaluation". Reid will have an MRI and the scans will be compared. David and I are anxious to see these results because we are so certain that the tumour is reducing. But until then we are back to being normal parents. Refereeing his fights with his big sister, cooking steak and chips (very important for Reids weight increase), washing, ironing etc etc..... to be continued
Reid, is now six and has completed two blocks of chemotherapy to help him fight Ewings Sarcoma in his right Tibia.
Our little boy is a very busy little man who often met me at the fron tgate at school dragging his school port head down saying"I'm sorry Mum but I got two Time Outs today...I didn't mean to talk when Mrs Coman was talking, I just didn't hear her", or "I didnt mean to spit water on the girls at Lunch time" etc etc. Occasionally he would be limping and sometimes mention to me that his leg hurt. It wasn't till Mum took the kids and I to Sydney during the easter Holidays this year that Reid was hit with his first major pain in his right leg. The pain travelled down his leg to the arch in his foot. I rubbed and rocked and prayed that the pain would go away. It did. This pain only resurfaced occasionally and not as dramatically and it seemed to swap limbs so I wrote it off to be "Growing Pains". Reid is a very tall and skinny kid with plenty of energy, and it was thought that this type of pain is quite common among boys his age. It wasn't until Reid ran his Fun Run at school on Thursday 17th May that david and I were a little alarmed that he limped the entire 300m around the oval. After checking his shoes at the end of the race and emptying the contents, (rocks, bark, and dirt) I was sure was the cause of the limping. He did say his leg was sore, and when I checked it looked ok. That afternoon he was running again. Saturday 19th Reid spent the day riding his bike but complained of a sore leg most of the day. I finally looked at the leg 7pm that night after a day of running to Nettball and birthday parties, doing the groceries etc. His leg looked considerably larger than his left leg. David and I thought we would sleep on it and if it was still swollen in the morning we would take Reid straight up to St Vincents Emergency.
Basically this was the start of this Roller coaster ride. We had an x-ray and the Doctor treating Reid was alarmed to say the least. He admitted us into hospital and called the Orthopedic surgeon on call to come and reveiw Reid's x-ray. He was alarmed also and told us that Reid would need an MRI in the morning. The MRI showed a malignant growth on the right Tibia and was definatley some form of cancer. We were sent to Royal Childrens Hospital in Brisbane immediately. We had time to go home pack and say good bye to Alexandra, organise someone to pick her up and drive to Brisbane. We were to meet Dr Tim Hassal in the Oncology Outpatients ward.
The following week Reid was scanned and rescanned, poked and bi-opsied. On Friday May 25th we were told the outcomes of all these tests. Reid has a 8cm Ewings Sarcoma on his Right leg. This type of cancer effects the bone and tissues and metatisies quickly. There is also a small spot on Reids Lower Left Lung and he will need this removed and checked.
After another 10 days in and out of hospital we were told that The spot on Reid's lung was not cancer and his Bone Marrow is not infected with cancers. This is very good news, however our oncologist made it very clear that this did not clear the lung, as the spot had to be something and he would be watching Reid's lungs very closely. I was very happy to hear this. This meant to me that Dr Tim was not going to look under every stone but he was going to look twice or even more.
Reid commenced his first chemo Friday 8th May. This made him very sick and he did not eat for the five days in hospital. Being a skinny kid, eating is a priority to keep up his strength. He asked Mum for a Steak early morning of day 6. Each block of chemo is 21 days long and Reid is to have six blocks before surgery.
Which brings us to today. I have condensed the past eight weeks to fill you in. Reid turned 7 on the 14th June (the day we got out of hospital after a lung biopsy and his first lot of chemo). There is a lot of other gorry stuff that our poor little man had to go through but he is doing well and looking at the site of the tumour I can see a difference. The swelling has reduced and Reid is putting on weight. On Monday 16th July we will have (amongst other tests) "Disease Evaluation". Reid will have an MRI and the scans will be compared. David and I are anxious to see these results because we are so certain that the tumour is reducing. But until then we are back to being normal parents. Refereeing his fights with his big sister, cooking steak and chips (very important for Reids weight increase), washing, ironing etc etc..... to be continued
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