Just a quick post to let you all know how he is progressing this week. Seth developed a temperature this week so he won't be released from hospital until his counts rise to a certain level (0.2 neutrophils for those who know what I'm talking about). Basically because he is still getting chemo and steroids, his counts are unlikely to reach that level anytime soon.
He developed mucositis in his mouth this week also, but it diminished the very next day which was fantastic. He had his painful needle of chemo this week and was incredibly brave. His hair is falling out all over the place, but he won't let anyone shave it. The steroids are starting to kick in and he is becoming increasingly teary and cranky. He is starting to get his little chubby cheeks. Thursday was a very difficult day for him. He was just so upset and incredibly homesick. Nothing could cheer him up. By 3pm the nurses unhooked him from his iv line and got physio to deliver a Ben10 bike and he spent the afternoon riding his bike around the hospital corridors as it was a miserably rainy day outside. This cheered him up a great deal. So this has become the routine for the time being. He gets unhooked at 3pm when he has a break in his medicine and off we go on his bike. I think it is a little bit of normality for him and it really makes a difference. It's good for me too as he burns off all that excess energy.
Sienna had a day off school this week to come into hospital for a blood test to confirm her match to Seth. We put many emla patches on her to numb her skin but she lost her bravado when the needle came out and reality hit. She screamed like we were cutting her in two through the entire ordeal. When we told her it was over, she sat up and said "I didn't feel a thing". We couldn't believe it. It will be an interesting time when it comes to getting the bone marrow from her. She won't make life easy for anyone that's for sure!!!
Seth
Saturday, March 10, 2012
Friday, March 2, 2012
His progress to date
A quick update on how Seth has been progressing since chemo follows: He has taken everything they have thrown at him and is doing really well. The doctors and nurses have commented at how well he has tolerated treatment so far. Chemo finished on Sunday and Monday, they told us that there was a very real possibility of going home for a while sometime in the week. On Tuesday, however, his counts (blood results) bottomed out and they wouldn't let him leave as the risk of infection was so great. He needed a platelet transfusion late Tuesday night and a red blood cell transfusion Wednesday. His counts continue to drop so they will just top him up with what he needs when he needs it. He seems to be developing mucositis which in simple terms is ulcers in the digestive tract. He is in alot of stomach pain with this so they are keeping him comfortable with pain relief. They believe he might have it in his throat as he complains of a burning pain there and he has an ulcer on his tongue as of this morning. Hopefully this won't worsen but some poor kids end up with a mouthful of painful ulcers. He has felt nausea as well, however this has been really well controlled with medicines as well.
He is keeping himself occupied with lego from the play therapist, school work, dvd's, playstation games and practising his guitar skills with the music therapist. There is a library at the hospital as well to visit and borrow books and dvd's from. We try to get outside the hospital to get some fresh air and sunshine once a day, but with the rain falling recently the most we can do is walk the halls of the hospital or visit the starlight room.
He is keeping himself occupied with lego from the play therapist, school work, dvd's, playstation games and practising his guitar skills with the music therapist. There is a library at the hospital as well to visit and borrow books and dvd's from. We try to get outside the hospital to get some fresh air and sunshine once a day, but with the rain falling recently the most we can do is walk the halls of the hospital or visit the starlight room.
Friday, February 24, 2012
The first week
Well..... to begin at the beginning....
Many people want to know how it came to our attention this time around.
Seth seemed unwell for a couple days, just a bit off colour. He threw up a couple times, but we put it down to the chemo. Sunday night (couple weeks ago now - how time fly's [flies???]) Seth's glands started swelling under his jawbone. They became quite large so that they stuck out of his neck. This was when we began to worry. The very next day I took him to Campbelltown for a blood test, x-ray and examination. The doctors there were hopeful of it just being a virus. Westmead requested the results and we got a phone call Thursday morning that they wanted him in for new blood tests. It was confirmed Thursday morning that there were some suspicious cells in his bloodwork. They took yet more blood for further testing and we got a phone call from them 6pm at night to confirm the cancer was back. We were back by 8am the following morning and Seth was to have his central line redone, bone marrow taken and lumbar puncture done and x-ray done. The x-ray confirmed that he had tumors on his lungs which is how T-cell presents. They didn't get him in to surgery until 2:30pm which was torturous because he had been fasting for so long. Then they ran out of time so they weren't able to do the central line. We waited all weekend without any information as his oncologist was on holidays. We were told we would find out how they were going to proceed on Monday. Monday was another long wait for surgery - 2pm was when Seth was called up for his central line to be inserted. We waited all day for the oncologist to tell us what was going on - never saw him. By Monday night I was over waiting patiently to see what the future held and requested to see someone, anyone at all who could give me some kind of information. I got a visit from an oncology fellow telling me that they couldn't tell me what was going on as they were waiting for approval for a new drug. Once they had the approval then they could tell us what to expect. Seth was in alot of pain with the central line - more than what I remembered from last time. He had quite a good bruise around the cut in the neck and had trouble moving his head around.
Tuesday we got the talk in the little room. The questions were answered, the information handed over and now we know what we are in for to some extent. I can't see Seth leaving the hospital for the remainder of 2012. His chemo is extremely intense. He is considered High Risk and will be required to undergo bone marrow transplant. There is going to be many fevers, many delays, many illnesses that come along with this kind of chemo treatment. His chances of getting through this are about 50% which is a fact we find hard to swallow and don't like dwelling on.
One day at a time is all we can manage at the moment. The outcome depends on how the chemo reacts to the treatment and how Seth reacts to the treatment. The cancer is already considered pretty aggressive as it returned while he was still on maintenance chemo. All we can do is hope that this lot works.
We have one bit of sunshine amongst all this and it is that Sienna is a perfect match to be a bone marrow donor. It is considered very lucky as only about 20 - 30% of siblings match. They like their percentages! It is nice to be on the side of the lucky percentages this time instead of the unlucky. This is the best possible outcome we could hope for in a bone marrow donor. The kids do so much better when it is a relative.
There are 2 ways a bone marrow transplant is done (from Sienna's point of view). They either give her a injection under her skin which makes her stem cells move to the blood and then they hook her up to a machine via a temporary central line inserted into her groin. The machine separates the stems cells from her blood, then pumps it back into her body. This happens for 5 days in a row. Or they make 2 incisions on either side of her back and extract a total of 300ml's of bone marrow from her hips - they can get about 10mls each needle so it will be roughly 30 needles into her hips to get the required amount out. Either way doesn't sound very nice, but they assure us she will forget the pain in a couple days time. We will be told more about the transplant when we get closer to the time.
Seth started his chemo on Wednesday - he has a cocktail of steroids mixed with 3 different types of chemo for 5 days - he has already had the chemo into his spinal fluid. They have found no sign of the cancer around his brain so this is also some good news. His marrow was about 60% (those percentages again!!!) filled with blasts (cancer) and we picked it up as early as we possibly could.
Seth is doing really well so far. They are very vigilant about making him as comfortable as possible. The chemo takes about 7-8 hours a day so we only have the morning to get outside and get some fresh air and sunshine. He only lasts about 30 minutes before he is too tired and wants to go back inside. The days are filled with lots of people making a difference to the kids in the ward whether it be cure our kids, camp quality, starlight foundation or any number of people trying to make a difference by volunteering their time, raising funds or handing out donations. It makes such a difference to life being lived in the confines of a hospital.
We will keep the blog updated as often as possible, but life just got a whole lot busier so forgive us if there is a little wait between postings.
Thank you to all who have left messages via facebook and on the blog. It is heartening to know there are so many people that are thinking of Seth and praying for him. A few words of support from so many people helps a whole lot more than you could possibly imagine. We are definitely not alone in this battle.
Many people want to know how it came to our attention this time around.
Seth seemed unwell for a couple days, just a bit off colour. He threw up a couple times, but we put it down to the chemo. Sunday night (couple weeks ago now - how time fly's [flies???]) Seth's glands started swelling under his jawbone. They became quite large so that they stuck out of his neck. This was when we began to worry. The very next day I took him to Campbelltown for a blood test, x-ray and examination. The doctors there were hopeful of it just being a virus. Westmead requested the results and we got a phone call Thursday morning that they wanted him in for new blood tests. It was confirmed Thursday morning that there were some suspicious cells in his bloodwork. They took yet more blood for further testing and we got a phone call from them 6pm at night to confirm the cancer was back. We were back by 8am the following morning and Seth was to have his central line redone, bone marrow taken and lumbar puncture done and x-ray done. The x-ray confirmed that he had tumors on his lungs which is how T-cell presents. They didn't get him in to surgery until 2:30pm which was torturous because he had been fasting for so long. Then they ran out of time so they weren't able to do the central line. We waited all weekend without any information as his oncologist was on holidays. We were told we would find out how they were going to proceed on Monday. Monday was another long wait for surgery - 2pm was when Seth was called up for his central line to be inserted. We waited all day for the oncologist to tell us what was going on - never saw him. By Monday night I was over waiting patiently to see what the future held and requested to see someone, anyone at all who could give me some kind of information. I got a visit from an oncology fellow telling me that they couldn't tell me what was going on as they were waiting for approval for a new drug. Once they had the approval then they could tell us what to expect. Seth was in alot of pain with the central line - more than what I remembered from last time. He had quite a good bruise around the cut in the neck and had trouble moving his head around.
Tuesday we got the talk in the little room. The questions were answered, the information handed over and now we know what we are in for to some extent. I can't see Seth leaving the hospital for the remainder of 2012. His chemo is extremely intense. He is considered High Risk and will be required to undergo bone marrow transplant. There is going to be many fevers, many delays, many illnesses that come along with this kind of chemo treatment. His chances of getting through this are about 50% which is a fact we find hard to swallow and don't like dwelling on.
One day at a time is all we can manage at the moment. The outcome depends on how the chemo reacts to the treatment and how Seth reacts to the treatment. The cancer is already considered pretty aggressive as it returned while he was still on maintenance chemo. All we can do is hope that this lot works.
We have one bit of sunshine amongst all this and it is that Sienna is a perfect match to be a bone marrow donor. It is considered very lucky as only about 20 - 30% of siblings match. They like their percentages! It is nice to be on the side of the lucky percentages this time instead of the unlucky. This is the best possible outcome we could hope for in a bone marrow donor. The kids do so much better when it is a relative.
There are 2 ways a bone marrow transplant is done (from Sienna's point of view). They either give her a injection under her skin which makes her stem cells move to the blood and then they hook her up to a machine via a temporary central line inserted into her groin. The machine separates the stems cells from her blood, then pumps it back into her body. This happens for 5 days in a row. Or they make 2 incisions on either side of her back and extract a total of 300ml's of bone marrow from her hips - they can get about 10mls each needle so it will be roughly 30 needles into her hips to get the required amount out. Either way doesn't sound very nice, but they assure us she will forget the pain in a couple days time. We will be told more about the transplant when we get closer to the time.
Seth started his chemo on Wednesday - he has a cocktail of steroids mixed with 3 different types of chemo for 5 days - he has already had the chemo into his spinal fluid. They have found no sign of the cancer around his brain so this is also some good news. His marrow was about 60% (those percentages again!!!) filled with blasts (cancer) and we picked it up as early as we possibly could.
Seth is doing really well so far. They are very vigilant about making him as comfortable as possible. The chemo takes about 7-8 hours a day so we only have the morning to get outside and get some fresh air and sunshine. He only lasts about 30 minutes before he is too tired and wants to go back inside. The days are filled with lots of people making a difference to the kids in the ward whether it be cure our kids, camp quality, starlight foundation or any number of people trying to make a difference by volunteering their time, raising funds or handing out donations. It makes such a difference to life being lived in the confines of a hospital.
We will keep the blog updated as often as possible, but life just got a whole lot busier so forgive us if there is a little wait between postings.
Thank you to all who have left messages via facebook and on the blog. It is heartening to know there are so many people that are thinking of Seth and praying for him. A few words of support from so many people helps a whole lot more than you could possibly imagine. We are definitely not alone in this battle.
Friday, February 17, 2012
An Unfortunate Update :- (
Well its been a while since last post and thats because our little champ had been doing so well but unfortunately, as some of you probably already know, he has had a relapse and we are back to square one.
He was admitted into hospital today and had a bone marrow test and lumbar puncture and started on IV's. Unfortunately because of the type of cancer he has to now undergo much more intensive treatment to try and get him back into remission and then they will give him a bone marrow transplant straight after.
He was so sick the first time that we can't begin to imagine how hard it will be on him this time, he is so brave though and so far apart from a few tears has been doing ok. Its not fair though, why him? he doesn't deserve this. One positive is that his younger sister Sienna is a perfect match for his bone marrow which apparently only happens in 20% of cases among family members. Most people have to get extended family tested or hope for a doner that is a match, so Sienna is quite chuffed that she might be able to help her big bro.
Thankyou for all your thoughts and prayers, they mean alot and we will keep you posted on his progress.
He was admitted into hospital today and had a bone marrow test and lumbar puncture and started on IV's. Unfortunately because of the type of cancer he has to now undergo much more intensive treatment to try and get him back into remission and then they will give him a bone marrow transplant straight after.
He was so sick the first time that we can't begin to imagine how hard it will be on him this time, he is so brave though and so far apart from a few tears has been doing ok. Its not fair though, why him? he doesn't deserve this. One positive is that his younger sister Sienna is a perfect match for his bone marrow which apparently only happens in 20% of cases among family members. Most people have to get extended family tested or hope for a doner that is a match, so Sienna is quite chuffed that she might be able to help her big bro.
Thankyou for all your thoughts and prayers, they mean alot and we will keep you posted on his progress.
Thursday, August 4, 2011
Quick update - things are good.
It was brought to my attention that I hadn't updated Seth's blog for some time - which is a good thing as it means things are running smoothly for us.
Seth is back at school and is getting a tremendous amount of support to help him feel comfortable. He has been having a bit of trouble adjusting back to school life and a few things have had to be put into place to help him.
His hair has grown back quite curly which seems to be a bit of a strange phenomenon after chemo and whilst I love it, he is having trouble doing it in the mornings.
He is eating like a horse at the moment so I am expecting some big growth spurts soon. I can't seem to fill him these days. He seems to be coping quite well with his chemo and is not vomiting up his methotrexate as he tended to do up to a couple months ago.
He is having blood tests done every 2 weeks and his counts are looking good at the moment. He had a bone marrow done a few weeks ago and the results are good - he is still in remission.
Seth is full of energy riding his scooter on the local skate ramp, learning to do backflips on our trampoline and bursting at the seems with up and go.
It is very nice to be posting a positive and happy update on the blog. Hopefully it will be a while till my next post which will mean that things are good.
Thanks for keeping up with our little man's progress.
Seth is back at school and is getting a tremendous amount of support to help him feel comfortable. He has been having a bit of trouble adjusting back to school life and a few things have had to be put into place to help him.
His hair has grown back quite curly which seems to be a bit of a strange phenomenon after chemo and whilst I love it, he is having trouble doing it in the mornings.
He is eating like a horse at the moment so I am expecting some big growth spurts soon. I can't seem to fill him these days. He seems to be coping quite well with his chemo and is not vomiting up his methotrexate as he tended to do up to a couple months ago.
He is having blood tests done every 2 weeks and his counts are looking good at the moment. He had a bone marrow done a few weeks ago and the results are good - he is still in remission.
Seth is full of energy riding his scooter on the local skate ramp, learning to do backflips on our trampoline and bursting at the seems with up and go.
It is very nice to be posting a positive and happy update on the blog. Hopefully it will be a while till my next post which will mean that things are good.
Thanks for keeping up with our little man's progress.
Saturday, June 25, 2011
Back to hospital
Seth returned to hospital with fevers again after he was out for about a week. It was again a Sunday night when he came down with another temperature. Off to hospital we went and onto antibiotics again. By Wednesday evening, the temperatures had gone for 48 hours and we were sent home. They couldn't find a reason why he was unwell. By Thursday night, though, we noticed that Sienna was feverish and so we checked Seth just in case and lo and behold he had another temperature. So, 24 hours after being released, we were back. This time they did extensive tests and were still not finding anything. The blood tests were showing a big drop in his platelets and along with some other symptoms, they had some concerns about Seth relapsing. As you can imagine, we were quite upset at that prospect and were holding out hope that they found another cause. They soon found out that Seth had two viruses. The first being influenza B and the second being CMV which is in the same strain as chicken pox. They had to do 2 more tests to check whether this is dormant or whether it is active, and if so how active. We have one test back and are waiting on the final test to tell us what the next step will be. At the moment Seth is receiving an antiviral medication which is as potent as chemo and is administered like chemo and drops his counts as does chemo. He has this twice a day through his canula. Unfortunately it harms the veins that the canula is in so it only works a couple of times and then they have to give him another canula to continue with the treatment. They are also taking lots of blood tests. Seth is not happy with being treated like a pin cushion and it is getting increasingly difficult for him to cooperate. Unfortunately, he is being held down now to get these things done which is not easy for me to watch by helplessly and not easy for him to endure. We have now been in hospital for 2 weeks - minus the one day home. I have come home just for the day to spend time with the girls and have a break. I will be back in tonight to relieve Brett. Hopefully we get this test soon. Depending on what it shows, will depend whether Seth continues this antiviral treatment and for how long. If it is long term then we will be able to bring him home but he will need a pick line in his elbow which is similar to a central line. This is so that we can hook him up to an infuser bottle with the drug in it and give it to him at home. In the meantime, we are just waiting for some news to see where we go from here. I will keep you updated when I return home again.
Saturday, May 28, 2011
A Week in Hospital
Last Sunday, Seth had a low grade fever in the mid to high 37's so we kept an eye on him all day. By 3 o'clock Monday morning his temperature had reached 38.9. So off we went to hospital. The doctors had started him immediately on antibiotics via a drip (he wanted his central line back in now he has experienced the canula in his hand and all those blood tests) to begin the fighting process in case they were fighting a bacterial infection. After many tests and several blood tests they determined that the cause of the temperatures which went up to 39.9 was Influenza A and the strain was Swine Flu. This is not as alarming as the media has made it out to be and he was started on Tamiflu medication and began to recover quite quickly. Unfortunately, he came down with a second infection due to the fact that the antibiotics he was on had killed all good flora in his digestive system. This allowed a nasty little bug to grow out of control and cause terrible diahorrea. They then changed his antibiotics and added more medicine for him to take. We were able to come home on Thursday - just! His blood counts were dropping lower and lower even though they took him off his chemo. When he arrived his neutrophils were 0.6 (on his chemo his neutrophils should be sitting at 1.0) the following day they were 0.4 and two days later (thursday) they were 0.2. They were heading in the wrong direction and if they had gone below 0.2 we would not have been able to leave the hospital. He is in high spirits but is very bored after being stuck in hospital all week and now because I have holed him up in the house. His sisters seem to have the same sickness as he as they are suffering high temps and bad coughs as well. I have enforced a self inposed isolation zone on our house, hoping that this flu doesn't get passed along. So far Brett and I haven't come down with it - we have sore throats and headaches and earaches that seem to come and go but no temps or coughs. The doctors have assured me that it will come as I was the one exposed to Seth at the hospital. All the doctors and nurses came in with gowns, masks and gloves which Seth thought was a bit funny. All I could think, was 'I was in for it'. So far so good though - positive thinking and all that!
Seth has to go back to hospital on Monday and have yet another blood test. Hopefully his neutrophils are headed the right way and we can move on with getting back to normal.
Seth has to go back to hospital on Monday and have yet another blood test. Hopefully his neutrophils are headed the right way and we can move on with getting back to normal.
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