Jonathon asked me to make tonight's post. He's feeling pretty tired since he had a fever most of yesterday afternoon. Turns out Jonathon forgot to take a bunch of the antibiotics they gave him after he had his wisdom teeth out, and of course, his body couldn't fight off the bacteria on it's own. His fever was gone as soon as I made him start taking the antibiotics again, so hopefully - lesson learned.
The fevers wear him out a lot, so Jonathon spent most of the day relaxing. His dad got him up and around a little by playing Wii with him. And his Aunt Judy brought him lunch. So he had lots of good company today.
Overall - a pretty good day.
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Wednesday, March 25, 2009
Day 63: Remembering to take all the pills
Jonathon asked me to make tonight's post. He's feeling pretty tired since he had a fever most of yesterday afternoon. Turns out Jonathon forgot to take a bunch of the antibiotics they gave him after he had his wisdom teeth out, and of course, his body couldn't fight off the bacteria on it's own. His fever was gone as soon as I made him start taking the antibiotics again, so hopefully - lesson learned.
The fevers wear him out a lot, so Jonathon spent most of the day relaxing. His dad got him up and around a little by playing Wii with him. And his Aunt Judy brought him lunch. So he had lots of good company today.
Overall - a pretty good day.
The fevers wear him out a lot, so Jonathon spent most of the day relaxing. His dad got him up and around a little by playing Wii with him. And his Aunt Judy brought him lunch. So he had lots of good company today.
Overall - a pretty good day.
7 comments:
smooth move, exlax! By now you have probably heard every thing you ever wanted to about taking your medications! Hopefully today will be a better day. Soon they all will! For now, just keep your head up and focus on that finish line!!
ReplyDelete
AnonymousMarch 27, 2009 at 1:33 PMfrom a fellow ALL team, we are on a similar path to yours. My husband was diagnosed on 13th Feb 09, with T-cell acute lymphoblastic leukaemia. He has a tumour in his chest, just above his heart, and has been for many scans, biopsies, blood tests etc etc. Our lives were changed in an instant. He has had 4 sessions of chemo so far, but has it every wednesday only. He had a repeat bonemarrow biopsy on wednesday, but it wasnt great news. The leukaemia is still there. What type of chemo are you on? Steven is on doxyrubicin, vincristine and high dose of steroids. Hope to chat to you soon, alison
ReplyDelete
I understand exactly what you're going through. Ny wife and I are stll going through the shock ourselves. It's like the one nightmare you'll think we'll never happen to you. And it does.
ReplyDelete
Early on, my wife and I decided to go to The University of Chicago for treatmeent. If you read the 'road here' links part 1 and 2, it talks about that.
I have many sessions of chemo so far. First off which, was my induction therapy in the hospital fo nearly 20 days. Afterwards, I was sent home to begin coures 2. Most course 2 is being given to me in my hometown according to my doctor's orders out of Chicago.
There are weeks where I receive chemo 4 times a week and they are times when I only receive it once. It just depends on my course schedule. During induction therapy, I took Vincristine, daunorubicin, PEG-asparaginase, and intrathecal methotrexate. When I wasn't in remission at the end of induction therapy, they started a different regimen using cytoxan, Ara-C, 6MP, and intrathecal methotrexate. So far this second regimen is what's really working. I'm not in remission yet, but hope to be soon.
I hope this goes smoothly for you and your husband. It's not an easy road, and I'll be thinking of you.
Best of luck to you and you family. And please, let me kmow if you have another questions...
~Jonathon- AnonymousMarch 28, 2009 at 7:44 AM
I dont think its possible for this 'journey' to go smoothly....there seem to be so many nasty twists and turns! We live in Cape town, South Africa and Steven is seeing a dr at the haematology unit in Constantiaberg hospital. Luckily it is only 1km down the road from where we live, so that is a bonus. The dr says the care he gets here is as good as anywhere else in the world, i hope that its the case.
ReplyDelete
We also celebrated our 4th wedding anniversary in march!
The drs here have never done a lumbar puncture and havent mentioned doing intrathecal methotrexate. I will ask next week when we see the dr why that is.
How far is the chicago hospital from where you stay? I havent read all your entries yet, life is so busy, but i will take time out tomorrow to spend more time with my computer!
I have 2 girls from a previous marriage, aged 14 and 11, who Steven has helped raise as their dad died from stomach cancer. So this morning I was helping out at the school fun fair, making chicken burgers & this afternoon we are going to friends for a braai. Are you also on a low-microbial diet...no fresh fruit, veg, cheese, cream, nuts etc etc?
enjoy your weekend, alison The Chicago hospigal we attend is about 2 hours from hour home Indiana. We live near the border.
ReplyDelete
I've had many lumbar punctures in the past few weeks. They're not fun. But as bad as getting a bonemarrow biopsy. Those can uncomfortable.
I am on a low fresh fruit diet too. We just celebrated our 4th anniverary on March 20th.
Keep in touch!This is so great that you have found each other! I know how much it means to Jonathon to have found someone who is going through exactly what he is going thru. My heart reaches out to you and your husband, Steven. I am sure that you will be able to find the same source of strength that Jonathon has been to find. You will most likely receive posts from all of Jonathon and Katies family and friends, so you will not feel alone. It seems that when this disease happens to those you love, it changes many lives. We are going to be having a bone marrow drive at the University of Notre Dame where Jonathon and Katie work, and hopefully if you husband ever gets in that situation,fingers crossed he doesn't, but if so, he will find a match from one of us! Keep your spirits up and hang in there. We are all here for you!
ReplyDelete- AnonymousMarch 29, 2009 at 3:37 AM
In cape town, 3 weeks ago, there was a cancer shavathon, where you either shave your head or dye it pink, to raise funds for cancer research. All our friends did our own fundraising at that time, to raise money for the bonemarrow foundation fund here in south africa. (its known as the sunflower fund)
ReplyDelete
So we dyed our hair pink, and 3 weeks later i am still getting lots of stares when i am out and about. We have also encouraged our friends to register and donate, so hopefully we are also making a difference to the numbers on the registry. Steven needs a bone marrow transplant, its the one thing that might cure him.
I was telling our friends last night how good it has been finding this blog site and hearing all your news in your journey with this 'dreaded' disease.....we are hating leukaemia, but reading all your ups and downs with it is hugely 'comforting' for us!
Steven was a very good horserider in his teens and early 20's, so today we are going to spend time with an old friend of his, who has many horses.....it will be good therapy for him, & my youngest daughter, rozie, is a devoted horse lover...so smiles all round!
HAve a good sunday, love alison
i have been really struggling to get this comment posted, think the only way is the 'anonymous' one! hope i manage
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smooth move, exlax! By now you have probably heard every thing you ever wanted to about taking your medications! Hopefully today will be a better day. Soon they all will! For now, just keep your head up and focus on that finish line!!
ReplyDeletefrom a fellow ALL team, we are on a similar path to yours. My husband was diagnosed on 13th Feb 09, with T-cell acute lymphoblastic leukaemia. He has a tumour in his chest, just above his heart, and has been for many scans, biopsies, blood tests etc etc. Our lives were changed in an instant. He has had 4 sessions of chemo so far, but has it every wednesday only. He had a repeat bonemarrow biopsy on wednesday, but it wasnt great news. The leukaemia is still there. What type of chemo are you on? Steven is on doxyrubicin, vincristine and high dose of steroids. Hope to chat to you soon, alison
ReplyDeleteI understand exactly what you're going through. Ny wife and I are stll going through the shock ourselves. It's like the one nightmare you'll think we'll never happen to you. And it does.
ReplyDeleteEarly on, my wife and I decided to go to The University of Chicago for treatmeent. If you read the 'road here' links part 1 and 2, it talks about that.
I have many sessions of chemo so far. First off which, was my induction therapy in the hospital fo nearly 20 days. Afterwards, I was sent home to begin coures 2. Most course 2 is being given to me in my hometown according to my doctor's orders out of Chicago.
There are weeks where I receive chemo 4 times a week and they are times when I only receive it once. It just depends on my course schedule. During induction therapy, I took Vincristine, daunorubicin, PEG-asparaginase, and intrathecal methotrexate. When I wasn't in remission at the end of induction therapy, they started a different regimen using cytoxan, Ara-C, 6MP, and intrathecal methotrexate. So far this second regimen is what's really working. I'm not in remission yet, but hope to be soon.
I hope this goes smoothly for you and your husband. It's not an easy road, and I'll be thinking of you.
Best of luck to you and you family. And please, let me kmow if you have another questions...
~Jonathon
I dont think its possible for this 'journey' to go smoothly....there seem to be so many nasty twists and turns! We live in Cape town, South Africa and Steven is seeing a dr at the haematology unit in Constantiaberg hospital. Luckily it is only 1km down the road from where we live, so that is a bonus. The dr says the care he gets here is as good as anywhere else in the world, i hope that its the case.
ReplyDeleteWe also celebrated our 4th wedding anniversary in march!
The drs here have never done a lumbar puncture and havent mentioned doing intrathecal methotrexate. I will ask next week when we see the dr why that is.
How far is the chicago hospital from where you stay? I havent read all your entries yet, life is so busy, but i will take time out tomorrow to spend more time with my computer!
I have 2 girls from a previous marriage, aged 14 and 11, who Steven has helped raise as their dad died from stomach cancer. So this morning I was helping out at the school fun fair, making chicken burgers & this afternoon we are going to friends for a braai. Are you also on a low-microbial diet...no fresh fruit, veg, cheese, cream, nuts etc etc?
enjoy your weekend, alison
The Chicago hospigal we attend is about 2 hours from hour home Indiana. We live near the border.
ReplyDeleteI've had many lumbar punctures in the past few weeks. They're not fun. But as bad as getting a bonemarrow biopsy. Those can uncomfortable.
I am on a low fresh fruit diet too. We just celebrated our 4th anniverary on March 20th.
Keep in touch!
This is so great that you have found each other! I know how much it means to Jonathon to have found someone who is going through exactly what he is going thru. My heart reaches out to you and your husband, Steven. I am sure that you will be able to find the same source of strength that Jonathon has been to find. You will most likely receive posts from all of Jonathon and Katies family and friends, so you will not feel alone. It seems that when this disease happens to those you love, it changes many lives. We are going to be having a bone marrow drive at the University of Notre Dame where Jonathon and Katie work, and hopefully if you husband ever gets in that situation,fingers crossed he doesn't, but if so, he will find a match from one of us! Keep your spirits up and hang in there. We are all here for you!
ReplyDeleteIn cape town, 3 weeks ago, there was a cancer shavathon, where you either shave your head or dye it pink, to raise funds for cancer research. All our friends did our own fundraising at that time, to raise money for the bonemarrow foundation fund here in south africa. (its known as the sunflower fund)
ReplyDeleteSo we dyed our hair pink, and 3 weeks later i am still getting lots of stares when i am out and about. We have also encouraged our friends to register and donate, so hopefully we are also making a difference to the numbers on the registry. Steven needs a bone marrow transplant, its the one thing that might cure him.
I was telling our friends last night how good it has been finding this blog site and hearing all your news in your journey with this 'dreaded' disease.....we are hating leukaemia, but reading all your ups and downs with it is hugely 'comforting' for us!
Steven was a very good horserider in his teens and early 20's, so today we are going to spend time with an old friend of his, who has many horses.....it will be good therapy for him, & my youngest daughter, rozie, is a devoted horse lover...so smiles all round!
HAve a good sunday, love alison
i have been really struggling to get this comment posted, think the only way is the 'anonymous' one! hope i manage