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!
Tuesday, July 31, 2007
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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