We still have not heard about possibly being on disability. We DID have an appointment today regarding our (nonexistant) income that left us reeling. We're in trouble. BIG trouble.
Decisions have to be made. I'm trying to stop my panicking and just concentrate on getting through Christmas with my sanity intact.
The house is quiet tonight. Lately Brian goes to bed at about 8:00 - 9:00pm. He wakes up STILL tired the next morning. It doesn't make sense. His hemoglobin is at an all-time high. Tonight he put Koby to bed in our bed (with a steamer, in an attempt to have Koby sleep through the night without a hacking cough that's been pestering him for a week now!) Brian fell asleep. He woke up just a bit ago, started to do dishes, and declared it bedtime again.
I'm still trying to pull together a few Christmas events despite the illness going on at our house. Friends came over and decorated cookies today, and tomorrow some more friends are coming to do the same. We look forward to visiting. We look forward to a bit of laughter and joy. And I REALLY look forward to having my mind on something else for a few short hours.
Wednesday, December 21, 2011
Monday, December 12, 2011
I feel like I have very little to say so I don't post. Life continues to be a struggle for us in more ways than one. Brian has been really sick lately and very rarely has "good days", which makes it hard on all of us. I've been spending way too much time out of the house trying to bury myself in other things but it's burning me out much too quickly. I haven't had enough work, and I hope to change that in the new year. But right now I just need to figure out how to handle all of this!
Brian's numbers have been excellent, so he should be better. Right? But with the daily nausea, migraine-like headaches (also almost a daily thing), fatigue, weakness, dizziness, (etc, etc)... he is unable to function in a work environment. Probably not even a desk job, which is what we thought he might have to resort to. So for Christmas we are waiting on the news from the government as to whether or not he is "disabled", in their standards.
Apart from all of that, I have been learning to deal with my new role as breadwinner. I never saw myself being the one going out and "bringing home the bacon". Can I admit that it freaks me out? The only thing I know how to do, since being a stay at home mom, is clean and cook. I don't feel like I know anything else. I think I need some training somewhere, but I don't know what direction to go. And I still feel like I'm needed at home (if Brian has a day where he's too sick to care for kids, do I just put a movie on for them to babysit them and leave them? What if almost EVERY day ends up being a sick day - which has been the case lately?) I'm trying to keep things as normal as possible for my kids, and I'm failing miserably. Actually, I'm failing miserably at everything right now. With so many balls in the air, how can I not?
Well, this is sounding much more depressing than I thought it would! Which is why I've stayed away from posting! Sorry about that!
Brian's numbers have been excellent, so he should be better. Right? But with the daily nausea, migraine-like headaches (also almost a daily thing), fatigue, weakness, dizziness, (etc, etc)... he is unable to function in a work environment. Probably not even a desk job, which is what we thought he might have to resort to. So for Christmas we are waiting on the news from the government as to whether or not he is "disabled", in their standards.
Apart from all of that, I have been learning to deal with my new role as breadwinner. I never saw myself being the one going out and "bringing home the bacon". Can I admit that it freaks me out? The only thing I know how to do, since being a stay at home mom, is clean and cook. I don't feel like I know anything else. I think I need some training somewhere, but I don't know what direction to go. And I still feel like I'm needed at home (if Brian has a day where he's too sick to care for kids, do I just put a movie on for them to babysit them and leave them? What if almost EVERY day ends up being a sick day - which has been the case lately?) I'm trying to keep things as normal as possible for my kids, and I'm failing miserably. Actually, I'm failing miserably at everything right now. With so many balls in the air, how can I not?
Well, this is sounding much more depressing than I thought it would! Which is why I've stayed away from posting! Sorry about that!
Monday, September 19, 2011
Anxious
I could go on and on and on about all the things spinning around in my head, but do any of you really want to read it? And could my fingers even keep up?! Nope, probably not... Brian just came back from his PLEX/Soliris treatment. The doctors decided to do a PLEX even though his numbers were still stable. And they are thinking it might be his LAST PLEX!! Amazing. We'll see what happens when he goes back to the hospital in two weeks. We're hoping the numbers stay stable.
Well, I'm going to go sip a cup of tea and see if I can stop my brain from going into overload. I am physically exhausted from all that's going on in my head. Sitting on the couch and watching some TV sounds like a really good plan...
Tuesday, August 16, 2011
Yay Soliris!
Brian started Soliris last Monday. To date he's had two doses. We hold high hopes that this drug will be the answer, and so far it is working well! I have to remind my blog readers, though, that this drug is not a CURE, it is a lifelong treatment. His numbers yesterday were as follows (I'll put yesterdays numbers first, and the approximate number's he's had this year in brackets just to put it in perspective!)
Platelets: 211 (anywhere from 60-180 during non blitz weeks)
Creatinine: 126 (it's been as low as 130, and as high as 160. Lower is better. Normal, for Brian, is 120ish)
Hemoglobin: 113 (It's been stuck in the 90-100 range, normal is 135+)
So... I'm trying not to get my hopes up. But this is looking good! He actually has color in his cheeks for the first time in ages, and he is no longer dealing with constant nausea and fatigue. I've even seen him chase his kids around the playground without getting winded. I don't remember the last time I saw that! It's very encouraging.
Platelets: 211 (anywhere from 60-180 during non blitz weeks)
Creatinine: 126 (it's been as low as 130, and as high as 160. Lower is better. Normal, for Brian, is 120ish)
Hemoglobin: 113 (It's been stuck in the 90-100 range, normal is 135+)
So... I'm trying not to get my hopes up. But this is looking good! He actually has color in his cheeks for the first time in ages, and he is no longer dealing with constant nausea and fatigue. I've even seen him chase his kids around the playground without getting winded. I don't remember the last time I saw that! It's very encouraging.
Tuesday, July 26, 2011
Big News
I've been looking into clinical trials for Soliris worldwide, and hadn't come up with anything quite yet. I wanted to be armed with information and then present it to Brian's team of doctors and start to "fight" for him to get the drug. At least to try it out!
So imagine my surprise when Brian phoned me from the hospital yesterday to tell me that his favorite Hemotologist told him he was going to start on Soliris in the very near future! With the complications Brian's been having at PLEX treatments (allergic reactions to human plasma, lack of a good response to synthetic plasma, numbers being very low despite blitz treatments, etc) the doctors have been running out of options. And Brian, I would think, would be a good candidate for a "trial run" of Soliris based on the fact that his kidneys are still functioning at 80%. In terms of aHUS, 80% kidney function is huge! Most often, the disease isn't caught until kidney function is almost at zero.
They hope to start treatment at the end of August. In the meantime they have to get a few things sorted out. For starters, they have to get IN WRITING that the drug company has agreed to put Brian on Soliris. So far it's only been a verbal agreement. Today Brian is getting the meningitis vaccination that is required for treatment. Soliris lowers resistance to infection, especially meningitis.
Brian has only been approved for three months of Soliris, being that it is such an expensive drug. When the three months are up, they expect the disease to return. Soliris is not a cure, it is a treatment option. But while he is on Soliris, here's what he can expect: Normal platelet count, without PLEX treatments. Lowered blood pressure, without medication. A return to normal hemoglobin, and creatinine levels. Woohoo!
Life will look VERY different for those three months. And at the end of those three months, his doctors can always re-apply, especially if Brian does really well! A few other things are going to have to change while Brian is being treated. Being that he is prone to infections, we will have to stay VERY far away from sickness
So imagine my surprise when Brian phoned me from the hospital yesterday to tell me that his favorite Hemotologist told him he was going to start on Soliris in the very near future! With the complications Brian's been having at PLEX treatments (allergic reactions to human plasma, lack of a good response to synthetic plasma, numbers being very low despite blitz treatments, etc) the doctors have been running out of options. And Brian, I would think, would be a good candidate for a "trial run" of Soliris based on the fact that his kidneys are still functioning at 80%. In terms of aHUS, 80% kidney function is huge! Most often, the disease isn't caught until kidney function is almost at zero.
They hope to start treatment at the end of August. In the meantime they have to get a few things sorted out. For starters, they have to get IN WRITING that the drug company has agreed to put Brian on Soliris. So far it's only been a verbal agreement. Today Brian is getting the meningitis vaccination that is required for treatment. Soliris lowers resistance to infection, especially meningitis.
Brian has only been approved for three months of Soliris, being that it is such an expensive drug. When the three months are up, they expect the disease to return. Soliris is not a cure, it is a treatment option. But while he is on Soliris, here's what he can expect: Normal platelet count, without PLEX treatments. Lowered blood pressure, without medication. A return to normal hemoglobin, and creatinine levels. Woohoo!
Life will look VERY different for those three months. And at the end of those three months, his doctors can always re-apply, especially if Brian does really well! A few other things are going to have to change while Brian is being treated. Being that he is prone to infections, we will have to stay VERY far away from sickness
Saturday, July 23, 2011
A Year Ago
A year ago today I was walking around a really fun fair with my two kids, my good friend and her two kids. We'd just entered the fair grounds and were looking around at all the displays near the entrance.
A year ago today I got a phone call on my cell phone. Brian was in the hospital in Langley because he was having what I thought would be short lived issues with his blood pressure and kidneys. On the phone he told me that they were going to put him in an ambulance and rush him - "code blue" - to VGH where he would require emergency medical attention. He told me that they'd just discovered that his platelet count was dangerously low.
A year ago today I was trying to figure out how not to crumple to my knees in a public park and start sobbing in front of my children. I was trying to keep my voice calm and I was wondering if keeping their Daddy's hospital stay a secret. I was thankful when my friend almost read my mind and distracted my kids by pointing out the newly hatched chicks nearby.
A year ago today I didn't know if I'd ever see my husband again. I knew how serious it was, and I could hear my doctor's words echoing in my head. "If you don't go to the hospital right now, you'll likely die within 24 hours" I wandered around the fair grounds for awhile just letting it sink in, not knowing if I was becoming a widow while Brian was riding in an ambulance, alone. I didn't have any family available to me that day, so I had no where to drop my kids off. I had a long drive into VGH and I didn't know what I'd find when I got there.
A year ago today I knew nothing about platelet counts, or plasma treatments, or the link between blood pressure and kidney function. I'd never heard of hemolytic uremic syndrome and I didn't know anything about rare blood diseases.
A year ago today my entire world changed...
A year ago today I got a phone call on my cell phone. Brian was in the hospital in Langley because he was having what I thought would be short lived issues with his blood pressure and kidneys. On the phone he told me that they were going to put him in an ambulance and rush him - "code blue" - to VGH where he would require emergency medical attention. He told me that they'd just discovered that his platelet count was dangerously low.
A year ago today I was trying to figure out how not to crumple to my knees in a public park and start sobbing in front of my children. I was trying to keep my voice calm and I was wondering if keeping their Daddy's hospital stay a secret. I was thankful when my friend almost read my mind and distracted my kids by pointing out the newly hatched chicks nearby.
A year ago today I didn't know if I'd ever see my husband again. I knew how serious it was, and I could hear my doctor's words echoing in my head. "If you don't go to the hospital right now, you'll likely die within 24 hours" I wandered around the fair grounds for awhile just letting it sink in, not knowing if I was becoming a widow while Brian was riding in an ambulance, alone. I didn't have any family available to me that day, so I had no where to drop my kids off. I had a long drive into VGH and I didn't know what I'd find when I got there.
A year ago today I knew nothing about platelet counts, or plasma treatments, or the link between blood pressure and kidney function. I'd never heard of hemolytic uremic syndrome and I didn't know anything about rare blood diseases.
A year ago today my entire world changed...
Wednesday, July 20, 2011
An Update
On Monday I went with Brian to the hospital to get some answers to the questions that plague my mind. In the last few weeks I've done more and more research (Have I mentioned that I'm a research buff?) into his condition and I'm not finding much in the way of help. But I HAVE found out a few interesting things (at the hospital, and before I even went)
- Brian's diagnosis is now an even longer title. Familial atypical hemolytic uremic syndrome. If you look it up, you won't find it. The most important part is the "atypical hemolytic uremic syndrome" part. The rest of it just signifies what TYPE of atypical HUS he has. Familial is in the title because his disease is hereditary, and it can either be a recessive or a dominant gene passed down. Recessive ALWAYS shows up in infancy or childhood, which naturally means that Brian's case is dominant.
- There has been a treatment plan introduced for such a rare case of HUS. It's been tried on a few patients with outstanding results. It's a drug called "Soliris". You may have heard the name before. Apparently it recently made the Forbes list of the most expensive drugs in the world. And, you guessed it, Soliris topped the list. It can only treat two different kinds of blood disorders so, naturally, it is not a widely used drug. That means the drug company can charge whatever they want for it. And they charge $20,000 per unit. If Brian were to receive this treatment, he would start off having a few units of Soliris a day until the doctors start to see results. In one week, Brian's treatment could easily top a million! And, um... yeah. We don't have that kind of money.
- Soliris was approved for use in the US in 2009. That means there could possibly be clinical trials elsewhere in the world. Maybe even Canada. We have to find out where clinical trials could be taking place and see if we can get Brian on "the list".
- The doctor I spoke with at the hospital said that, from his standpoint, the disease is "managed". He didn't say it was managed WELL, he just said he was satisfied with where numbers are. This was explained to me as a response to my concerned questions about Brian's well-being here at home. There has been a noticeable decline in his health. Last week was hard. He spent so much time either being nauseated to the point that it affected his daily life, or throwing up. He is fatigued much of the time and I am so glad he doesn't have to go to work every morning right now. He is losing weight, pale, and generally feels unwell the majority of the time. I tried explaining that to his doctor, but he said the only concern the hematology team has with Brians numbers is his consistently high blood pressure. He's on a handful of drugs to try to bring his blood pressure down, but they don't seem to be doing their job. Next on my "research agenda": finding some way to lower his blood pressure!!
Well, this is just a snippet of information I've received recently and I'm overwhelmed just typing it out! More to come as I continue searching out answers!
- Brian's diagnosis is now an even longer title. Familial atypical hemolytic uremic syndrome. If you look it up, you won't find it. The most important part is the "atypical hemolytic uremic syndrome" part. The rest of it just signifies what TYPE of atypical HUS he has. Familial is in the title because his disease is hereditary, and it can either be a recessive or a dominant gene passed down. Recessive ALWAYS shows up in infancy or childhood, which naturally means that Brian's case is dominant.
- There has been a treatment plan introduced for such a rare case of HUS. It's been tried on a few patients with outstanding results. It's a drug called "Soliris". You may have heard the name before. Apparently it recently made the Forbes list of the most expensive drugs in the world. And, you guessed it, Soliris topped the list. It can only treat two different kinds of blood disorders so, naturally, it is not a widely used drug. That means the drug company can charge whatever they want for it. And they charge $20,000 per unit. If Brian were to receive this treatment, he would start off having a few units of Soliris a day until the doctors start to see results. In one week, Brian's treatment could easily top a million! And, um... yeah. We don't have that kind of money.
- Soliris was approved for use in the US in 2009. That means there could possibly be clinical trials elsewhere in the world. Maybe even Canada. We have to find out where clinical trials could be taking place and see if we can get Brian on "the list".
- The doctor I spoke with at the hospital said that, from his standpoint, the disease is "managed". He didn't say it was managed WELL, he just said he was satisfied with where numbers are. This was explained to me as a response to my concerned questions about Brian's well-being here at home. There has been a noticeable decline in his health. Last week was hard. He spent so much time either being nauseated to the point that it affected his daily life, or throwing up. He is fatigued much of the time and I am so glad he doesn't have to go to work every morning right now. He is losing weight, pale, and generally feels unwell the majority of the time. I tried explaining that to his doctor, but he said the only concern the hematology team has with Brians numbers is his consistently high blood pressure. He's on a handful of drugs to try to bring his blood pressure down, but they don't seem to be doing their job. Next on my "research agenda": finding some way to lower his blood pressure!!
Well, this is just a snippet of information I've received recently and I'm overwhelmed just typing it out! More to come as I continue searching out answers!
Sunday, June 19, 2011
End of the Year
The end of the school year is sneaking up on me. I was forewarned, when Mercy entered Kindergarten, that the end of the year tends to be a very busy time. The term "busy" is an understatement! There have been assemblies to attend, parties, field trips, sports day and countless little girls and boys birthday parties to attend.
Don't get me wrong, I am not complaining. Far from it! I enjoy these little activities that remind me that life goes on. Sometimes it feels as if life drums along to a different beat for my family. Depending on whether or not Brian is having a "sick week". The possibility of a blitz week always looms over my head like a dark cloud. So when we have a week filled with normal activities, I celebrate!
Tuesday, June 7, 2011
*yawn*
I yawn because I'm tired. I'm tired because this learning curve is getting the best of me. Learning curve? Yes. I'm learning all kinds of things right now. What exactly Brian's disease means, and what forms of treatment are there in other parts of the world, what kinds of natural remedies treat symptoms he has and what are the best DIRECT forms of getting the nutrition he needs, how to cook these "different" foods (and how to afford them on said limited budget!), how to be the "man of the house" when Brian is sick (for example, I tried to learn how to run our rickety old lawn mower last week. Tried and failed, I might add). It's frustrating and overwhelming some days. Days like today I'm just completely tired out.
So the blog has kinda been one of the balls that has been dropped, obviously. A LOT has been dropped. I'm no longer a good sister, a good friend, or a good daughter. Not that I ever claimed to be perfect in the first place. I've forgotten birthdays. I even (almost) forgot Koby's Well, I was a day late. ON his birthday it took a school friend to remind me that it wasn't the NEXT day, it was TODAY! Well, I threw something together last minute and I don't think he noticed. Poor little neglected man...
Well. There you have it. A post!
So the blog has kinda been one of the balls that has been dropped, obviously. A LOT has been dropped. I'm no longer a good sister, a good friend, or a good daughter. Not that I ever claimed to be perfect in the first place. I've forgotten birthdays. I even (almost) forgot Koby's Well, I was a day late. ON his birthday it took a school friend to remind me that it wasn't the NEXT day, it was TODAY! Well, I threw something together last minute and I don't think he noticed. Poor little neglected man...
Well. There you have it. A post!
Wednesday, May 4, 2011
Whoa
Okay. It's been awhile. Has it really been almost a month since I posted? Honestly, I haven't run out of things to say or share. I have just been busy doing LIFE lately. The new-new-NEW normal. It's an adjustment.
Brian ended up struggling again with his platelet count. Now it's stable. Not a HIGH stable, but it's stable. And that's good enough for us, I suppose.
On Monday we got the news that the genetic testing came back. Nothing prepared us for the news that it IS genetic and my kids have a 50% chance of having the same genetic mutation. What that means exactly? We don't quite know. But 50% just sounds frightening. I've had questions swimming around my head since the news, and according to Brian we'll be having a conference call with some specialists who can answer all our questions. It would've been nice to have questions answered the very next day, but I am getting used to playing the medical waiting game. Everything takes time.
For those of you that may like medical mumbo jumbo, and are research buffs and/or curious... The gene affected by the abnormality is in the C3 gene sequencing: the Exon 14 gene. Most sufferers of HUS/TTP have issues with their Adams 13 gene, but Brians case is (of course) different. Of the 6 categories under Atypical HUS, Brian's genetic mutation doesn't fit in with any of them. So the very rare disease he has is even more rare.
If that went over your head, I don't blame you!
Brian ended up struggling again with his platelet count. Now it's stable. Not a HIGH stable, but it's stable. And that's good enough for us, I suppose.
On Monday we got the news that the genetic testing came back. Nothing prepared us for the news that it IS genetic and my kids have a 50% chance of having the same genetic mutation. What that means exactly? We don't quite know. But 50% just sounds frightening. I've had questions swimming around my head since the news, and according to Brian we'll be having a conference call with some specialists who can answer all our questions. It would've been nice to have questions answered the very next day, but I am getting used to playing the medical waiting game. Everything takes time.
For those of you that may like medical mumbo jumbo, and are research buffs and/or curious... The gene affected by the abnormality is in the C3 gene sequencing: the Exon 14 gene. Most sufferers of HUS/TTP have issues with their Adams 13 gene, but Brians case is (of course) different. Of the 6 categories under Atypical HUS, Brian's genetic mutation doesn't fit in with any of them. So the very rare disease he has is even more rare.
If that went over your head, I don't blame you!
Monday, April 4, 2011
bad days
It's been hard, watching the progression of Brian's disease. Not that things are changing rapidly, but the last few weeks we've noticed a trend. What used to be his bad days are now his good days. Does that make sense? On a bad day, he'd be tired and winded, feel nauseated and look pale. But recently that's been the norm. On a bad day he's been feeling worse. Sometimes MUCH worse.
Just over two weeks ago his numbers started a decline. I thought nothing of it this time. Every other time I'd panicked, thinking he'd have to have a "blitz" of treatments (three treatments in one week, usually). But every time the numbers came up again on their own. I guess you can say I got overconfident that it would work itself out. Surprise, surprise - his platelet count dropped down to 78. And I didn't even notice. I've been less and less diligent with checking his lab numbers, so it took us by surprise. To remind you, his platelet count was in the 60's when he was rushed to VGH the first time. So it was pretty close for a second time. 6 treatments later (make that 7, counting today's regular treatment) and the numbers still aren't where they should be.
I'm frustrated. I feel so helpless, so STUCK. I want to get off this roller coaster, or I want to be useful somehow, and help Brian get better. But there's nothing I can do, except try to support him. It's not enough.
Just over two weeks ago his numbers started a decline. I thought nothing of it this time. Every other time I'd panicked, thinking he'd have to have a "blitz" of treatments (three treatments in one week, usually). But every time the numbers came up again on their own. I guess you can say I got overconfident that it would work itself out. Surprise, surprise - his platelet count dropped down to 78. And I didn't even notice. I've been less and less diligent with checking his lab numbers, so it took us by surprise. To remind you, his platelet count was in the 60's when he was rushed to VGH the first time. So it was pretty close for a second time. 6 treatments later (make that 7, counting today's regular treatment) and the numbers still aren't where they should be.
I'm frustrated. I feel so helpless, so STUCK. I want to get off this roller coaster, or I want to be useful somehow, and help Brian get better. But there's nothing I can do, except try to support him. It's not enough.
Monday, March 14, 2011
very bad news indeed
I just got a call from my favorite Mother in law (even if I had more than one, I just KNOW she'd be my favorite). Brian was at the hospital having his weekly PLEX treatment and the kids were with Gramma. I've been hit by a nasty flu bug that's pretty much landed me flat on my back! I can't remember the last time I felt so miserable. Cold, then hot, sore throat, nauseated, headaches, body aches, fevers... But I digress...
Brian just picked the kids up from Gramma's house and they're on their way home. She phoned me because she wasn't sure Brian would tell me himself. He got bad news today (we've dealt with it before, but I'm nervous anyway) His platelet counts are 80 today. 80! To put it in perspective, again, platelets are supposed to be anywhere from 150 - 400. At about 60 you start to bleed out. Scary. So he's going to be going back to hospital Wednesday and Friday, she tells me. We're having a "blitz week" of PLEX treatments. I hate those kinds of weeks... The fact that he can't work 3 out of 5 days adds an extra stress. Money stress.
Brian just picked the kids up from Gramma's house and they're on their way home. She phoned me because she wasn't sure Brian would tell me himself. He got bad news today (we've dealt with it before, but I'm nervous anyway) His platelet counts are 80 today. 80! To put it in perspective, again, platelets are supposed to be anywhere from 150 - 400. At about 60 you start to bleed out. Scary. So he's going to be going back to hospital Wednesday and Friday, she tells me. We're having a "blitz week" of PLEX treatments. I hate those kinds of weeks... The fact that he can't work 3 out of 5 days adds an extra stress. Money stress.
Thursday, March 10, 2011
claw
What's new on our front? Well, good and bad (as usual!). Brian and I were just at the hospital today. We got a call last night that he was booked for a test - nice of them to give us notice! A dye had to be inserted into the veins in his arm to see if he can have surgery to create a fistula in the near future. We haven't spoken to the specialist but we already know the bad news - his veins are just too small! They may still be able to do a fistula in his upper arm, but it requires much more work and much more time off to heal! So I'm praying something miraculous happens in the meantime.
We have also been waiting to hear about the genetic testing. It was done months ago. There is a very good chance his type of Atypical HUS is genetic, and could be passed down to my kids. First they'd test his siblings, if he tests positive for the genetic code, to see if any of them carry the same trait. THEN my kids would get tested. I have been waiting on pins and needles to hear those results. They were supposed to come in last Friday, but we've heard nothing.
I've made this post long enough after weeks (months?) of silence. Thanks for being "out there".
We have also been waiting to hear about the genetic testing. It was done months ago. There is a very good chance his type of Atypical HUS is genetic, and could be passed down to my kids. First they'd test his siblings, if he tests positive for the genetic code, to see if any of them carry the same trait. THEN my kids would get tested. I have been waiting on pins and needles to hear those results. They were supposed to come in last Friday, but we've heard nothing.
I've made this post long enough after weeks (months?) of silence. Thanks for being "out there".
Thursday, January 6, 2011
On
- On the Brian front: Amazingly enough, he is doing really well! With a few treatments postponed due to holidays and one appointment accidentally missed, his numbers are holding steady. We're very happy about that, as you can imagine.
- In the next few weeks Brian will be seeing a surgeon, who will set up an appointment for the fistula to be created in his arm. This means he'll be able to have the tubes taken out of his chest, which decreases the possibility of infection (a huge concern, especially since they go directly to his heart) This ALSO means easier access when blood needs to be taken, or when he needs a future PLEX treatment. but it takes months for it to be ready after surgery, so it will be ready for use in a few months.
- My time at the keyboard is coming to and end, I have two kids crawling on me. Thus the reason my blog has been abandoned, for the most part! Maybe I'll add that to my list of things to do while the kids are in school!!
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