Seth has had a very full-on week at hospital. He had chemo every day for 5 days. He got through it very well so far, but I imagine he will be feeling the results this week coming. He is up for another week of chemo starting this Wednesday.
He is having a new chemo needle in the bottom and this one really rattles him. It is extremely painful and it takes a long time to inject. It just seems to go on and on - as usual though, he just lays there and takes it with a couple "ouches" while it goes in. He usually has tears in his eyes afterwards. He has another 3 of them coming up this week. I wish I could have them for him.
The bone marrow team is really ramping up. We have spoken to the radiation team and they have explained what the short term and long term effects are going to be. Seth is forever going to have to be careful with his health for the rest of his life. He will have trips to hospital forever to check for the long term side effects, I won't go into all of them but he will certainly feel the effects of radiation for the rest of his life. He will be getting 6 doses of radiation to his entire body. Two a day for 3 days. The radiation is essential in his treatment as it can get to what the doctors call safe zones in the body where the chemo cannot get to. This gives the leukaemia nowhere to hide. This makes him very nauseas and mirrors the effects of chemo. He will be exhausted by the final dose and probably sleep alot. It will destroy his bone marrow to make room for Siennas marrow. This is booked in for 12th - 14th June. Then they will wait until the following monday and the transplant will take place. If his bone marrow results aren't good enough, it will be put off for another 2 weeks for further chemotherapy to take place.
We met again with the bone marrow team to discuss things further. All things rest on week 13's bone marrow results (you wouldn't want to be superstitious at all!!). Seth is getting test after test to make sure he is healthy enough to continue to transplant. They take markers on how his organs are functioning so they can tell when or if they become damaged or compromised throughout treatment. We seem to have most days filled with either tests or chemo. It is coming quickly now.
We do have some good news, and that is that the Leukaemia Foundation has kindly donated the use of a flat across the road from the hospital. This is so handy as Brett and the girls can visit on weekends and Seth and I can go back and forth to all the appointments without having to drive the distance each time. The benefits are just too great to mention. This is a true blessing and will make life so much easier for all of us. We have it till the end of June, however they are trying to find us somewhere else to stay after that.
Thank you again to every one who has sent cards, letters and gifts from all across the world. It is overwhelming and such a great comfort. Seth is wearing his symbol of strength around his neck. It certainly makes Seth feel happy to receive these letters and cards and gives Brett and I a sense of support and strength knowing so many care.
I will update again as soon as I can. Much love to you all.xx
Seth
Tuesday, May 15, 2012
Friday, May 4, 2012
SURPRISE !!! Another week at home!!!!
I took Seth to hospital very early Monday morning and for the first time ever, Seth was the first one to go under GA. It makes such a difference to the day. He had a lumbar puncture, bone marrow aspirate and methotrexate into his spinal fluid. We were home by midday - this was a real treat!
The plan was to go back Wednesday for admission. We got called in at around 11:30 so we packed up the car and headed back to hospital. We waited at clinic for Seth's blood results to come back. The doctor came and said we could go back home for another week. Seth's counts were dropping from the chemo on Monday and the oncologist doesn't think he will be well enough to get the doses of chemo that he is due to have over the next couple of weeks. He has got quite a busy couple of weeks coming up with about 4 different chemo's being used plus steroids again.
We are now due back to hospital on Thursday for admission. His counts are expected to be high enough by then and I have no idea how long it will be until we are able to leave again.
The Bone Marrow Team are now starting to really move things along and we have another appointment coming up to discuss things further. My stomach churns at the thought - but it is a necessary evil.
Seth is now getting all his appointments sorted - he has had his eye test. His audiology appointment is coming up and radiology is not far away either. It feels like we are on the downhill run now. We will be beginning week 11 on Thursday (in a 15 week program). It draws nearer.
The plan was to go back Wednesday for admission. We got called in at around 11:30 so we packed up the car and headed back to hospital. We waited at clinic for Seth's blood results to come back. The doctor came and said we could go back home for another week. Seth's counts were dropping from the chemo on Monday and the oncologist doesn't think he will be well enough to get the doses of chemo that he is due to have over the next couple of weeks. He has got quite a busy couple of weeks coming up with about 4 different chemo's being used plus steroids again.
We are now due back to hospital on Thursday for admission. His counts are expected to be high enough by then and I have no idea how long it will be until we are able to leave again.
The Bone Marrow Team are now starting to really move things along and we have another appointment coming up to discuss things further. My stomach churns at the thought - but it is a necessary evil.
Seth is now getting all his appointments sorted - he has had his eye test. His audiology appointment is coming up and radiology is not far away either. It feels like we are on the downhill run now. We will be beginning week 11 on Thursday (in a 15 week program). It draws nearer.
Tuesday, April 24, 2012
Seth home for a week
Seth did get his long awaited temperature, however, thankfully, it was very short-lived and the expected fierce illness didn't come. Also, his counts have recovered enough for him to be able to come home for a week. We weren't expecting such a quick count recovery and it is definitely an unexpected blessing to have him home for a while.
Seth has had further chemo but has taken it on the chin with not many side effects.
Sienna has had a visit with the Bone Marrow Team and was trying to be very brave when they put the blood pressure cuff on. She was breathing deeply and holding back the tears - she was really trying so hard. She didn't know what it was going to feel like and she thinks anything a doctor does must hurt. She has seen Seth do it a thousand times but it's different when it's her turn. It was so funny and it was hard to keep from laughing and take the whole thing as serious as she obviously was. She couldn't wait to get out of there before they thought of some other horrible thing to torture her with! After she was saved from the doctors clutches Brett and I were told about how they will take the bone marrow and what will happen to Sienna and the bone marrow etc. They will be taking 440mls from her tiny little hips - it seems like a lot to a mum. She will be pale and lethargic for a while and quite sore on her back with some bruising for a few days. She will need iron supplements for a month but they said kids bounce back very quickly and she should be fine to go home the same day as long as there are no side effects from the anaesthetic.
We came home yesterday(Monday) and we have Seth with us until next Monday when he has to go to clinic for a lumbar puncture, bone marrow aspirate and methotrexate into his central nervous system. Afterwards if he is well, we can take him home again and bring him back in for admission on Wednesday for two weeks of heavy duty chemo.
Seth will be getting his bone marrow transplant in 8-10 weeks depending upon his bone marrow results. If the cancer is being killed off the way they hope it is, then, it will be 8 weeks. If it is being stubborn about it, it will be 10 weeks. So around late June, early July there will be no going back.
Seth has had further chemo but has taken it on the chin with not many side effects.
Sienna has had a visit with the Bone Marrow Team and was trying to be very brave when they put the blood pressure cuff on. She was breathing deeply and holding back the tears - she was really trying so hard. She didn't know what it was going to feel like and she thinks anything a doctor does must hurt. She has seen Seth do it a thousand times but it's different when it's her turn. It was so funny and it was hard to keep from laughing and take the whole thing as serious as she obviously was. She couldn't wait to get out of there before they thought of some other horrible thing to torture her with! After she was saved from the doctors clutches Brett and I were told about how they will take the bone marrow and what will happen to Sienna and the bone marrow etc. They will be taking 440mls from her tiny little hips - it seems like a lot to a mum. She will be pale and lethargic for a while and quite sore on her back with some bruising for a few days. She will need iron supplements for a month but they said kids bounce back very quickly and she should be fine to go home the same day as long as there are no side effects from the anaesthetic.
We came home yesterday(Monday) and we have Seth with us until next Monday when he has to go to clinic for a lumbar puncture, bone marrow aspirate and methotrexate into his central nervous system. Afterwards if he is well, we can take him home again and bring him back in for admission on Wednesday for two weeks of heavy duty chemo.
Seth will be getting his bone marrow transplant in 8-10 weeks depending upon his bone marrow results. If the cancer is being killed off the way they hope it is, then, it will be 8 weeks. If it is being stubborn about it, it will be 10 weeks. So around late June, early July there will be no going back.
Friday, April 13, 2012
Update
Sorry for the delayed update, I havent been home since our 5 day stay - still not home and updating via an iPad which is not the easiest to type on.
On our return to hospital Seth spiked a temp yet again so they once again began antibiotics. He got mucositis all over his lips in his nose all through his digestive system . His nose wouldn't stop bleeding so they had to burn it to stop it - much less painful than it sounds. His lips also constantly bled from the ulcers. His lips are just now recovering but he is getting the mucositis returning to his mouth.
He has had a few of those nasty chemo needles - aspariginase, steroids, methotrexate, vincristine and mitoxanthrone aka "the smurf drug" as it is bright blue. It is one of the most toxic drugs but the kids love the blue going in and the green wee coming out! Thats one way to learn about colour mixing! The smurf chemo is meant to make him very ill over the next 6 - 7 weeks. Seth has been really well for the last week, however we are staying in hospital as they are expecting a fever any minute and we live too far away to get him here within an hour. He has quite an easy going doctor who doesn't get worried over much so when he says this drug is fierce and the illness to come from it will be fierce and he doesn't want him to leave the hospital I tend to take notice. As I am writing this Seth's temp has gone up to 37.4 so it looks like it may begin tonight.
Seth had an allergic reaction to an antibiotic they gave him and he got a red itchy rash over his head, back and chest and made his fever to increase to over 39 degrees. They tried to persist with this drug over many days playing with diluting it and running it over longer periods but the rash continued to irritate him so they had to find a new drug to do the job. They think he may have had a staph infection but it is also a type which is a known contaminant so they arent exactly sure if it was in him or if it was on something that came into contact with the culture.
He had platelets a couple days ago, his counts are 0.0 and expected to stay there for many weeks to come. He is in week 8 of a 15 week program. He had vincristine today and has more coming over the next couple weeks.
On our return to hospital Seth spiked a temp yet again so they once again began antibiotics. He got mucositis all over his lips in his nose all through his digestive system . His nose wouldn't stop bleeding so they had to burn it to stop it - much less painful than it sounds. His lips also constantly bled from the ulcers. His lips are just now recovering but he is getting the mucositis returning to his mouth.
He has had a few of those nasty chemo needles - aspariginase, steroids, methotrexate, vincristine and mitoxanthrone aka "the smurf drug" as it is bright blue. It is one of the most toxic drugs but the kids love the blue going in and the green wee coming out! Thats one way to learn about colour mixing! The smurf chemo is meant to make him very ill over the next 6 - 7 weeks. Seth has been really well for the last week, however we are staying in hospital as they are expecting a fever any minute and we live too far away to get him here within an hour. He has quite an easy going doctor who doesn't get worried over much so when he says this drug is fierce and the illness to come from it will be fierce and he doesn't want him to leave the hospital I tend to take notice. As I am writing this Seth's temp has gone up to 37.4 so it looks like it may begin tonight.
Seth had an allergic reaction to an antibiotic they gave him and he got a red itchy rash over his head, back and chest and made his fever to increase to over 39 degrees. They tried to persist with this drug over many days playing with diluting it and running it over longer periods but the rash continued to irritate him so they had to find a new drug to do the job. They think he may have had a staph infection but it is also a type which is a known contaminant so they arent exactly sure if it was in him or if it was on something that came into contact with the culture.
He had platelets a couple days ago, his counts are 0.0 and expected to stay there for many weeks to come. He is in week 8 of a 15 week program. He had vincristine today and has more coming over the next couple weeks.
The results from his bone marrow we thought were great to begin with - we were told he was in remission which meant the drugs were working. But once we got the MRD results back (MRD is a very powerful microscope test they do to see cancer cells) it found the cancer still existing. The doctor told me this wasn't great news, but it wasn't awful news. So... We wait for the next bone marrow MRD results which are done in week 13 and hope for a better result.
Seth had a wonderful Easter weekend. We were fortunate enough to be able to rent out a room at Ronald McDonald house for the four nights. This meant Brett and the girls were right across the park from us and Seth was well enough to get gate passes. We did putt putt and went to Balmoral beach. We ate dinner down at the house at a table like a proper family and we sat together on the couch and watched tv together as a family. Seth and I just had to come back to sleep the night and stay till around midday for all his meds to be given. We then had freedom for the rest of the day. It was wonderful - I was so pleased he was well enough to enjoy the Easter weekend and get out for a change and joke and fight with his sisters and to do holiday activities like most kids get to do. It was refreshing.
I would like to send out a Thankyou to Millie and Asher who sent a very thoughtful gift with no return address. Thankyou to Heritage College in South Australia -Seth is going to make a Thankyou card this weekend. To the many kind and generous people who send gifts please know that they are greatly appreciated and they put smiles on our dials. I am trying to send a note of thanks either via Facebook or letter and I would hate to miss anyone out. I apologise that I am a little delayed in getting to them as there are so many people to thank.
Monday, March 26, 2012
Home sweet home
Firstly I would like to thank everyone who comments on this blog and on facebook. It is so encouraging to know we have so much support from all around the world. Particularly to hear stories of successful bone marrow transplants!!
This week has been a rollercoaster again. Brett and I met with the Transplant Team on Monday - let me just say it was not the greatest moment of my life. They were extremely blunt and 90% of the discussion was about all the things that can go wrong, all the ways we could lose Seth, all the problems we will encounter along the way. We left that meeting in a dumbfounded daze. The next day for me, once I came out of the daze was very emotional as what they had said hit me full force. I don't want to go into all that they said as hopefully very little of it will happen. It has made me extremely nervous of what is ahead, but as they said, we are out of options. It is either do the transplant or take him home and watch him die. The one thing I cannot fathom is that if he relapses in the first 6 months after the transplant we lose him - there is nothing they can do. If he relapses within the following 6 months there is very little they can do and we will probably lose him. A relapse 12 months after transplant means they may be able to do something. Its hard to swallow - the risk is huge - this is an aggressive form that is known to relapse - I want the information, but I don't want to hear it.
Seth had some high temperatures this week so he was put on additional antibiotics and that seemed to do the trick. The fever broke and his counts quickly rose. On Wednesday they began another round of chemo - vincristine and steroids. As his counts rose the doctors took the opportunity to send him home for a short break, so Seth is home with us now - where he should be. He came home late Friday and he is not due back until Wednesday to undergo a lumbar puncture and yet more chemotherapy. He is very lethargic, quite pale but very content being home with his family and his dog Ruby.
This week has been a rollercoaster again. Brett and I met with the Transplant Team on Monday - let me just say it was not the greatest moment of my life. They were extremely blunt and 90% of the discussion was about all the things that can go wrong, all the ways we could lose Seth, all the problems we will encounter along the way. We left that meeting in a dumbfounded daze. The next day for me, once I came out of the daze was very emotional as what they had said hit me full force. I don't want to go into all that they said as hopefully very little of it will happen. It has made me extremely nervous of what is ahead, but as they said, we are out of options. It is either do the transplant or take him home and watch him die. The one thing I cannot fathom is that if he relapses in the first 6 months after the transplant we lose him - there is nothing they can do. If he relapses within the following 6 months there is very little they can do and we will probably lose him. A relapse 12 months after transplant means they may be able to do something. Its hard to swallow - the risk is huge - this is an aggressive form that is known to relapse - I want the information, but I don't want to hear it.
Seth had some high temperatures this week so he was put on additional antibiotics and that seemed to do the trick. The fever broke and his counts quickly rose. On Wednesday they began another round of chemo - vincristine and steroids. As his counts rose the doctors took the opportunity to send him home for a short break, so Seth is home with us now - where he should be. He came home late Friday and he is not due back until Wednesday to undergo a lumbar puncture and yet more chemotherapy. He is very lethargic, quite pale but very content being home with his family and his dog Ruby.
Saturday, March 17, 2012
Another week, another temp
This week has been full of highs and lows.
On tuesday Seth allowed me to shave his head as his hair was everywhere and starting to really annoy him. Afterwards, he was very subdued - I think reality hit him a bit harder that he is really doing this all over again.
Seth's kidneys were having difficult functioning on the antibiotics that were being given to him so the drs took him off it on Wednesday and we had a semi-normal day. Seth has discovered that there is a KFC and a McDonalds within walking distance from the hospital and although he complains of being tired and weak (an effect of steroids) he seems to gather the energy for a walk to get some chips! Amazing to watch him perk up when he is going to get the food he is after. We had a great day Wednesday when his uncle (Andrew) came for a visit and we took him for a big bike ride out in the sunshine and somehow ended up at McDonalds!! Fancy that!!! When we arrived we got a phone call from my aunt(Wendy), cousin(Roxanne) and cousin in law(Amanda) who had her gorgeous baby girl(Madison) with her. They ended up joining us at McDonalds and it was so so good to feel like a normal person visiting Maccas with family. We walked back after Seth was showing disgust at how long he had to sit around listening to the women talk. Luckily he had my brother for company so they could talk mens business. Once back in his room for a well deserved rest his other uncle(Shane) and aunty(Dan) turned up for a night of entertainment.
The next day, Seth wasn't feeling so well, he was tired and lethargic and I thought maybe it was too much for him. Turns out he got his temperatures back with a vengeance - so back onto the drip and antibiotics - the same ones that cause his kidneys not to function correctly. So he will be monitored and doses adjusted to try and keep his kidneys working well.
The doctors gave Seth an xray on his chest on Friday to check if the chemo had been working and turns out the mass in his lungs has now disappeared. This is fantastic news and a great relief to know that things are working well. We will know more next week when he has a bone marrow aspirate done as to just how well treatment so far is working.
Seth begins his new rounds this coming week and also his kidney function test to see how they are going. So busy week for him coming up.
On tuesday Seth allowed me to shave his head as his hair was everywhere and starting to really annoy him. Afterwards, he was very subdued - I think reality hit him a bit harder that he is really doing this all over again.
Seth's kidneys were having difficult functioning on the antibiotics that were being given to him so the drs took him off it on Wednesday and we had a semi-normal day. Seth has discovered that there is a KFC and a McDonalds within walking distance from the hospital and although he complains of being tired and weak (an effect of steroids) he seems to gather the energy for a walk to get some chips! Amazing to watch him perk up when he is going to get the food he is after. We had a great day Wednesday when his uncle (Andrew) came for a visit and we took him for a big bike ride out in the sunshine and somehow ended up at McDonalds!! Fancy that!!! When we arrived we got a phone call from my aunt(Wendy), cousin(Roxanne) and cousin in law(Amanda) who had her gorgeous baby girl(Madison) with her. They ended up joining us at McDonalds and it was so so good to feel like a normal person visiting Maccas with family. We walked back after Seth was showing disgust at how long he had to sit around listening to the women talk. Luckily he had my brother for company so they could talk mens business. Once back in his room for a well deserved rest his other uncle(Shane) and aunty(Dan) turned up for a night of entertainment.
The next day, Seth wasn't feeling so well, he was tired and lethargic and I thought maybe it was too much for him. Turns out he got his temperatures back with a vengeance - so back onto the drip and antibiotics - the same ones that cause his kidneys not to function correctly. So he will be monitored and doses adjusted to try and keep his kidneys working well.
The doctors gave Seth an xray on his chest on Friday to check if the chemo had been working and turns out the mass in his lungs has now disappeared. This is fantastic news and a great relief to know that things are working well. We will know more next week when he has a bone marrow aspirate done as to just how well treatment so far is working.
Seth begins his new rounds this coming week and also his kidney function test to see how they are going. So busy week for him coming up.
Saturday, March 10, 2012
Another week in hospital
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!!!
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!!!
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