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
Thursday, November 22, 2007
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).
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