Today was a very long day. I got my central line catheter inserted this morning. It was ok. It really hurts right now, but supposedly in a couple of days I won't be able to feel it much. And then I had to get blood drawn (again!) but since the Doctor didn't give his official permission to use the central line, I had to get poked in the arm again. Waaahhh...
I had a trial leukopheresis early this afternoon. It was very unpleasant because when the blood comes out and goes through the machine, it gets cold, and so I was absolutely freezing the whole time. I had 5 heated blankets piled on top of me, and wrapped around my head, but I still couldn't stop shivering. It was only an hour and a half, and on Monday and possibly till Thursday, the collection will be 5 hours! I'm going to bring a huge coat and hat and those hand warmer things to put inside my slippers. I also signed the rest of the consent forms, met with some doctors, had another x-ray, and waited a lot in waiting rooms.
Tomorrow I have to go in to get the catheter checked, go to a training class, and get my first shot of Neupagin. I will hopefully then go home. Our insurance company is being a pain (surprise) saying that I can only get the Neupagin from a mail order service. So if they can't get it to me by Saturday I'll have to stay in Houston and get the shots at the hospital. It's pretty ridiculous, but I think it will end up working out.
Ok, I'm so tired and my arm is so sore from the catheter, so I'll close for now.
The boys are doing great. They went to the Houston zoo today and got soaked in a downpour on the way home. Ben is getting used to waiting in waiting rooms while stuff happens to me.
Have a great Friday everyone!
Thursday, June 19, 2008
Wednesday, June 18, 2008
quick update from Houston
Hi Everyone,
I'm in Houston right now, sitting in my hotel room after a long day. On Monday I got a call from the transplant nurse. As soon as I saw the "Unknown Caller" on my phone, I knew there was trouble (whenever I get an "unknown caller" it is someone from either Baylor or MD Anderson). And sure enough, it was the nurse telling me that they forgot one more test they needed to do, and so I needed to stay another day to get that test completed on Friday. I was upset because we had just finalized arrangements for the boys to stay at friends' houses, and now I'd have to find a place for them to stay one more night and day. But more than that, I was upset because I'm feeling a little desperate about how few days I've got left with my boys. I was so upset that I was going to have one less day with them! After calling Ben and my mom and crying for an hour, Ben called his mom and she said she'd fly out the next day and come with us to Houston with the boys, and stay till after the stem cell collection. So instead of being away from my boys for 3 days and 3 nights, we're all together! It is great!
The boys had a fun day with Grandma Jackee, going to the Natural History Museum, the Butterfly Museum, riding on the light rail, and now they are downstairs swimming in the hotel pool after a nice dinner at Olive Garden. I'm so glad it worked out this way.
Today I had more lab work done, which means of course more blood draws. I have a very high pain tolerance, I really do, but I am getting tired of getting stuck in the arm. Shots don't bother me a bit, I don't even blink. But getting needles in my veins just plain hurts, and I'm sick of it. Every time I come to Houston, they draw blood. What are they doing with all that blood? Can't they just do all the tests all at once? Today they took 25 vials of blood!!! 14 at MD Anderson, and then 11 more at Baylor. And with the first draw, my vein collapsed after 12 vials, so I had to get stuck again for the last two. Sigh... I'm just tired of IV's for MRI's, IV's for steroids, blood draws every time I come to Houston. I'm a pin cushion! I told my brother I could never be a Heroin junkie because I just hate getting stuck in my veins.
But the good news is tomorrow morning I have a central line catheter placed in my chest, so hopefully no more sticks in the arm!
I also had a chest x-ray, training for my chest catheter, I met with the MD Anderson neurologist, and then had my final assessment at Baylor. This involved another EDSS evaluation, including the walking test. I was very nervous. I didn't think they would disqualify me from the study at this late date even if I was beyond the EDSS parameters for the study, but I just didn't want to have any doubt in my mind. So in order to squeeze under that EDSS 5.5 limit, I had to walk 100 meters without aid (no cane, no leaning on the wall), and without resting. I was very nervous about this. I had Ben push me around in the wheelchair all day to save my leg strength. I'm glad I did, because I did make the 100 meters, but just barely. It was so hard! All my cross country endurance training paid off, though, because I made it! I was mostly scared about losing my balance, and I had a couple of scary moments, but I made it and I am so relieved. So last January I could walk 320 meters without aid, and now 6 months later I can only walk 100 meters. I guess that's what my form of MS does in 6 months. I am very glad I'm having this transplant now instead of in another 6 months.
I also had a few other evaluations-- the typical MS physical stuff looking at reflexes and spasticity and stuff, but then also a peg test to test my dexterity (putting little pegs into little holes, and then taking them out again, and then again with the other hand), and a math test. All the other physical stuff I was pretty pathetic in, but the math test? Yeah, I still got it! It was sort of tricky, not really a math test per se, but more of a memory test. She put on a CD and a guy would say one number, then another number, and I'd have to add them and say the answer, then 3 seconds later, he'd say another number, and I'd have to add that one, not to the first sum, but to the second number I added in the first sum. It's kind of hard to explain, but it was a combination of a test of how well you know your addition tables (helping my 6 year olds with math helped with that!), while keeping track of the numbers the guys states on the CD. There were I think 50 or 60 questions, and I think I got them all right. So yay me. There was also a timed walking test (25 feet, assistance allowed), and a quality of life questionaire. And then signing all the consent forms. I hate consent forms. I've had to sign a whole bunch now, and I'm just tired of reading about how every step in this process can kill me (yes, I know), how I'll end up in premature menopause because of the chemo and will be unable to have any more children (yes, I know, do you need to rub salt in the wound EVERY time I come?), how the procedure won't necessarily cure my MS (wait, so why am I doing this??), etc., etc. I know it's necessary, but still, is the redundancy of consent forms really necessary? :-)
Tomorrow I have my last set of consent forms, and then I'm good to go, I think. Oh yeah, tomorrow's consent forms mean I can't take the oral sedative they normally give before the catheter insertion. I guess you can't sign consent forms for 24 hours after the sedative, and I can't reschedule my appointment with Dr. Popat, so I'll just have to go in there cold and try not to be nervous. I'm actually not too nervous, so I think I'll be ok.
Ok, one more thing and then I'll end. So while I'm at Baylor, the nurse comes in and tells me of "one slight problem." Uh oh. Apparently the appointment on Friday (for which we rearranged everything and flew Ben's mom in) needed to be rescheduled. Apparently no one is in on Saturday to process the results. So they're going to squeeze that test in tomorrow after the catheter insertion and before my appointment with Dr. Popat. This is fine, but also annoying because when the nurse called me on Monday and told me about this "one more test," I asked her if there was any way to schedule it on Thursday, and she kindly, but very firmly, told me there was no way. And now, magically, it is scheduled on Thursday after all! Oh well, I'm just glad it got rescheduled to an EARLIER time and not to a LATER time, because I don't want anything to interfere with the stem cell collection. And I think I have to be here on Friday anyway since I have to attend some training classes for the catheter or something.
So anyway, that's the update. Things are moving forward, and it's nice to cross all of these things off my list. And I'm really grateful for the extra few days I can spend with my boys.
I'm in Houston right now, sitting in my hotel room after a long day. On Monday I got a call from the transplant nurse. As soon as I saw the "Unknown Caller" on my phone, I knew there was trouble (whenever I get an "unknown caller" it is someone from either Baylor or MD Anderson). And sure enough, it was the nurse telling me that they forgot one more test they needed to do, and so I needed to stay another day to get that test completed on Friday. I was upset because we had just finalized arrangements for the boys to stay at friends' houses, and now I'd have to find a place for them to stay one more night and day. But more than that, I was upset because I'm feeling a little desperate about how few days I've got left with my boys. I was so upset that I was going to have one less day with them! After calling Ben and my mom and crying for an hour, Ben called his mom and she said she'd fly out the next day and come with us to Houston with the boys, and stay till after the stem cell collection. So instead of being away from my boys for 3 days and 3 nights, we're all together! It is great!
The boys had a fun day with Grandma Jackee, going to the Natural History Museum, the Butterfly Museum, riding on the light rail, and now they are downstairs swimming in the hotel pool after a nice dinner at Olive Garden. I'm so glad it worked out this way.
Today I had more lab work done, which means of course more blood draws. I have a very high pain tolerance, I really do, but I am getting tired of getting stuck in the arm. Shots don't bother me a bit, I don't even blink. But getting needles in my veins just plain hurts, and I'm sick of it. Every time I come to Houston, they draw blood. What are they doing with all that blood? Can't they just do all the tests all at once? Today they took 25 vials of blood!!! 14 at MD Anderson, and then 11 more at Baylor. And with the first draw, my vein collapsed after 12 vials, so I had to get stuck again for the last two. Sigh... I'm just tired of IV's for MRI's, IV's for steroids, blood draws every time I come to Houston. I'm a pin cushion! I told my brother I could never be a Heroin junkie because I just hate getting stuck in my veins.
But the good news is tomorrow morning I have a central line catheter placed in my chest, so hopefully no more sticks in the arm!
I also had a chest x-ray, training for my chest catheter, I met with the MD Anderson neurologist, and then had my final assessment at Baylor. This involved another EDSS evaluation, including the walking test. I was very nervous. I didn't think they would disqualify me from the study at this late date even if I was beyond the EDSS parameters for the study, but I just didn't want to have any doubt in my mind. So in order to squeeze under that EDSS 5.5 limit, I had to walk 100 meters without aid (no cane, no leaning on the wall), and without resting. I was very nervous about this. I had Ben push me around in the wheelchair all day to save my leg strength. I'm glad I did, because I did make the 100 meters, but just barely. It was so hard! All my cross country endurance training paid off, though, because I made it! I was mostly scared about losing my balance, and I had a couple of scary moments, but I made it and I am so relieved. So last January I could walk 320 meters without aid, and now 6 months later I can only walk 100 meters. I guess that's what my form of MS does in 6 months. I am very glad I'm having this transplant now instead of in another 6 months.
I also had a few other evaluations-- the typical MS physical stuff looking at reflexes and spasticity and stuff, but then also a peg test to test my dexterity (putting little pegs into little holes, and then taking them out again, and then again with the other hand), and a math test. All the other physical stuff I was pretty pathetic in, but the math test? Yeah, I still got it! It was sort of tricky, not really a math test per se, but more of a memory test. She put on a CD and a guy would say one number, then another number, and I'd have to add them and say the answer, then 3 seconds later, he'd say another number, and I'd have to add that one, not to the first sum, but to the second number I added in the first sum. It's kind of hard to explain, but it was a combination of a test of how well you know your addition tables (helping my 6 year olds with math helped with that!), while keeping track of the numbers the guys states on the CD. There were I think 50 or 60 questions, and I think I got them all right. So yay me. There was also a timed walking test (25 feet, assistance allowed), and a quality of life questionaire. And then signing all the consent forms. I hate consent forms. I've had to sign a whole bunch now, and I'm just tired of reading about how every step in this process can kill me (yes, I know), how I'll end up in premature menopause because of the chemo and will be unable to have any more children (yes, I know, do you need to rub salt in the wound EVERY time I come?), how the procedure won't necessarily cure my MS (wait, so why am I doing this??), etc., etc. I know it's necessary, but still, is the redundancy of consent forms really necessary? :-)
Tomorrow I have my last set of consent forms, and then I'm good to go, I think. Oh yeah, tomorrow's consent forms mean I can't take the oral sedative they normally give before the catheter insertion. I guess you can't sign consent forms for 24 hours after the sedative, and I can't reschedule my appointment with Dr. Popat, so I'll just have to go in there cold and try not to be nervous. I'm actually not too nervous, so I think I'll be ok.
Ok, one more thing and then I'll end. So while I'm at Baylor, the nurse comes in and tells me of "one slight problem." Uh oh. Apparently the appointment on Friday (for which we rearranged everything and flew Ben's mom in) needed to be rescheduled. Apparently no one is in on Saturday to process the results. So they're going to squeeze that test in tomorrow after the catheter insertion and before my appointment with Dr. Popat. This is fine, but also annoying because when the nurse called me on Monday and told me about this "one more test," I asked her if there was any way to schedule it on Thursday, and she kindly, but very firmly, told me there was no way. And now, magically, it is scheduled on Thursday after all! Oh well, I'm just glad it got rescheduled to an EARLIER time and not to a LATER time, because I don't want anything to interfere with the stem cell collection. And I think I have to be here on Friday anyway since I have to attend some training classes for the catheter or something.
So anyway, that's the update. Things are moving forward, and it's nice to cross all of these things off my list. And I'm really grateful for the extra few days I can spend with my boys.
Sunday, June 15, 2008
Houston Childrens Museum
We took the boys with us to Houston on Thursday, so they could have a chance to see where MD Anderson is and to have some sort of visual on where I'll be for the transplant. They were mostly just excited to get to the Houston Children's Museum, and didn't seem to care too much about seeing the hospital, but I still think it will be good for them to have some idea of where I am.
The Museum was great! It's not that big, and when we first went in, I was a little disappointed because I'd heard so many great things about it. But it turned out to be great. The boys loved it, and spent more than 5 hours, and would have happily stayed a couple more hours if they could have. It had tons of interactive stuff from making electrical circuits to make light bulbs go off and on, to seeing their voices on an oscilloscope, to putting together impossible puzzles (blocks in various configurations that you have to put together into a cube), to making "roller coasters" with nothing but pipe insulation, plastic cups, and masking tape. And a lot more!
We have very independent boys, none of whom were at all shy of simply leaving the area where we were, and going to another area they wanted to see. This made for a few different times wandering around the museum trying to track them all down.
I had my MRI at 5:00 and Ben took the boys on the light rail down to the downtown where they walked around, went into some of the tall buildings, ate french fries at Burger King, and otherwise killing time. I thought my MRI would be short, since the last one was only an hour or so. But it ended up being pretty long since they had to also do some sort of "spectroscopy" study where the MRI measures various chemical compounds in the brain (don't ask me how or why they do this). So I wasn't done until shortly before 8:00 PM (more than 2 1/2 hours in the machine!). But I won't have to have that particular study done again for 5 years, so that's good! Ben was starting to wonder where I was, and thought maybe my cell phone stopped working (I told him I'd call him when I was done, which I thought would be by 7:00 PM at the LATEST). So they came to the hospital, and were actually just coming down the hall when I came out of the waiting room! So it worked out.
We drove home that night and got in shortly before midnight. The boys and I are listening to "Eldest" (the sequel to "Eragon"), and that made the trip to and from Houston fly by.
Summer's going pretty well for the boys. We've been reasonably ok in keeping up with our goals of limiting computer play and doing school work every day. I get pretty sad when I think about how few days I have left with them. And a little freaked out when I think about how much stuff I need to get done in the next 11 days! I keep a notebook and pen by the bed because my mind races at night thinking about everything I need to do and pack to get ready for our adventures this summer, and writing them down helps me to actually be able to get to sleep.
I have some pictures from the museum, but I'll have to wait to post those until after I have a chance to open them and edit them first.
The Museum was great! It's not that big, and when we first went in, I was a little disappointed because I'd heard so many great things about it. But it turned out to be great. The boys loved it, and spent more than 5 hours, and would have happily stayed a couple more hours if they could have. It had tons of interactive stuff from making electrical circuits to make light bulbs go off and on, to seeing their voices on an oscilloscope, to putting together impossible puzzles (blocks in various configurations that you have to put together into a cube), to making "roller coasters" with nothing but pipe insulation, plastic cups, and masking tape. And a lot more!
We have very independent boys, none of whom were at all shy of simply leaving the area where we were, and going to another area they wanted to see. This made for a few different times wandering around the museum trying to track them all down.
I had my MRI at 5:00 and Ben took the boys on the light rail down to the downtown where they walked around, went into some of the tall buildings, ate french fries at Burger King, and otherwise killing time. I thought my MRI would be short, since the last one was only an hour or so. But it ended up being pretty long since they had to also do some sort of "spectroscopy" study where the MRI measures various chemical compounds in the brain (don't ask me how or why they do this). So I wasn't done until shortly before 8:00 PM (more than 2 1/2 hours in the machine!). But I won't have to have that particular study done again for 5 years, so that's good! Ben was starting to wonder where I was, and thought maybe my cell phone stopped working (I told him I'd call him when I was done, which I thought would be by 7:00 PM at the LATEST). So they came to the hospital, and were actually just coming down the hall when I came out of the waiting room! So it worked out.
We drove home that night and got in shortly before midnight. The boys and I are listening to "Eldest" (the sequel to "Eragon"), and that made the trip to and from Houston fly by.
Summer's going pretty well for the boys. We've been reasonably ok in keeping up with our goals of limiting computer play and doing school work every day. I get pretty sad when I think about how few days I have left with them. And a little freaked out when I think about how much stuff I need to get done in the next 11 days! I keep a notebook and pen by the bed because my mind races at night thinking about everything I need to do and pack to get ready for our adventures this summer, and writing them down helps me to actually be able to get to sleep.
I have some pictures from the museum, but I'll have to wait to post those until after I have a chance to open them and edit them first.
Monday, June 09, 2008
School's out update
Now that school is out, I'm so busy! Isn't it supposed to be the other way around? :-) It is really nice not to have to get up at 6:00 AM, though. My days consist of trying to do chores, trying to get my kids to do chores, trying to get my kids to do some schoolwork every day, trying not to let my kids play on the computer all day, and trying to keep cool. It has been so hot. It's been in the upper 90's for days and days and days now. Apparently it's kinda early in the year for this many consecutive days of upper 90's. Thankfully it's not too humid here. I try to avoid going outside for any reason except to go from an air conditioned car directly into an air conditioned building, so I'm surviving, but I also miss being able to be outside!
The only time of day I can be outside is in the evening, and that's when the mosquitoes are out in full force. It makes me so mad! I truly hate mosquitoes! My kids have heard me say I hate mosquitoes, and they immediately call me on saying a bad word ("hate"), but I tell them hate is only a bad word when you are using it about a person. And mosquitoes are not people, so it's all good. Dave, is there any way you could whip me up a quick batch of DDT in your lab? I'd pay serious money for it! Seriously, maybe I should push for an addendum to the ADA (Americans with Disabilities Act) that legalizes the use of DDT for MS patients who otherwise can't go outside at all. It's discrimination, I tell you! :-)
The boys finished the school year off well. Brigham's teacher was so proud of him. Remember how he struggled with reading at the beginning of the year? He was on the verge of being sent to that "special" class for reading (horrors!). But he finished the year reading above grade level. He still doesn't love reading, but it's no longer 20 minutes of pure torture for him (or me, having to help him through it).
We had our end-of-year party last Saturday. We ended up with 16 kids, which was just right. Any more would have been too crazy. They mostly swam, but also jumped on the trampoline, rode bikes on the sports court, and at the end we had a scavenger hunt (started with a clue to a certain location where they found another clue to another location, etc.) to find a treasure chest filled with candy bags. One of the kids told his mom on the way out that it was "the best party ever," so I guess it went ok! We had 2 teenagers from the ward here as life guards. They did a great job and were incredibly helpful. Ben was the barbecue man, and I couldn't go outside at all because it was too hot, so the teenagers handled a lot of the refereeing type stuff. A few moms stayed for a while after bringing their kids over to help me get food prepared and taken outside, which was also very helpful. So all-in-all it wasn't terribly stressful, and the kids all had a really good time.
Our first week of summer was pretty good. We got a new computer for the boys. Just a desktop and a small flat-screen monitor, less than $250 for the whole thing. So the boys can play games and stuff and not be using mine all the time. Of course, now one of them uses mine all the time and another uses the other all the time! My goal is to do a limited home school agenda each day, and then let them do whatever they want the rest of the time (well, plus their daily chores). We do math and writing and reading each day, and we'll do science experiments and stuff for fun once in a while. They've been doing pretty well with that. They are happy to do schoolwork, just a little too silly sometimes, and I have to rein them in. But the computer use was a little unreasonable last week, so this week we instituted a new rule which is no computer games until after 3:00 PM. I let them go on the internet for some educational games during the day, but no regular old games until after 3. I thought I'd get a lot of resistance, but actually I got none! They accepted the rule and were happy doing other things without me nagging them at all.
On Saturday the boys had a Tae Kwon Do demonstration at a local theater just before and after a showing of "Kung Fu Panda." The movie was great, by the way. I have a pet-peeve about supposedly kids movies having more adult themes. It bugs me. Can't a kids movie just be for kids? Why do they think they need to have more "adult" themes-- do they think adults won't take their kids to the movies without them? Maybe. Anyway, Kung Fu Panda is a kids movie just for kids. It has great messages, great animation, and lots of great martial arts sequences!! The boys' TKD instructor had them perform some moves and patterns, and then had them line up to side kick boards. He brought really thick boards again, and I was doubtful. There are thin, 1/2 inch boards specifically used for karate and stuff that you can buy from martial arts suppliers, but he brought regular 3/4 inch boards from Home Depot or somewhere. Last demonstration the boys were at, he brought those as well, and I'm not sure anyone broke a board! So I was very proud of Brigham when he took his turn and BAM, broke that board right in half. He was one of only 3 or 4, I think, and definitely the youngest and smallest. He was very proud of himself too. It's a hard thing as a twin mom, to want to praise one twin, but not make the other twin feel bad. So I praised him and then quickly tried to change the subject. When we got home, Joseph got out one of the thinner boards he had broken at an earlier demonstration, and broke *that* board in half, so he could say he broke a board too.
A week ago Sunday I had to give the closing prayer for Stake Conference. I was nervous but it went well I guess. My strategy was to never actually look out onto the congregation, and I was successful in that strategy. :-) And then they gave me one of the beautiful flower arrangements afterward, so it was worth it.
Ok, so the next few things I have going on for my transplant are:
This Thursday my last MRI. I think all of us (Ben and the boys and I) will go out to Houston on Wednesday night and spend the night and then spend the day doing fun things around Houston (Children's museum, etc.), and showing the boys where the hospital is so they have some way of visualizing where I'll be. My MRI isn't until late afternoon, and then we'll drive home afterward.
Next Wednesday and Thursday I go in for the final preliminary tests, meet with an MD Anderson neurologist, sign all the final consent forms with Dr. Popat (the transplant doctor), get the catheter placed in my chest, and start the stem cell mobilization medication.
The next Monday I'll go back to Houston for the stem cell collection. This can take from 1-4 days depending on how I respond. I'm hoping for 1 day!
Then the next Friday morning we are flying to LA!!
It's all happening fast, after such a long delay, and I'm getting nervous again. I was starting to get nervous in April, too, when I thought things were coming down fast then, but this time I *really* think it's going to happen. I'm most worried about my boys. And about me missing my boys!! I'm dreading being apart from my boys a lot more than the transplant.
Ok, that's my update for tonight.
The only time of day I can be outside is in the evening, and that's when the mosquitoes are out in full force. It makes me so mad! I truly hate mosquitoes! My kids have heard me say I hate mosquitoes, and they immediately call me on saying a bad word ("hate"), but I tell them hate is only a bad word when you are using it about a person. And mosquitoes are not people, so it's all good. Dave, is there any way you could whip me up a quick batch of DDT in your lab? I'd pay serious money for it! Seriously, maybe I should push for an addendum to the ADA (Americans with Disabilities Act) that legalizes the use of DDT for MS patients who otherwise can't go outside at all. It's discrimination, I tell you! :-)
The boys finished the school year off well. Brigham's teacher was so proud of him. Remember how he struggled with reading at the beginning of the year? He was on the verge of being sent to that "special" class for reading (horrors!). But he finished the year reading above grade level. He still doesn't love reading, but it's no longer 20 minutes of pure torture for him (or me, having to help him through it).
We had our end-of-year party last Saturday. We ended up with 16 kids, which was just right. Any more would have been too crazy. They mostly swam, but also jumped on the trampoline, rode bikes on the sports court, and at the end we had a scavenger hunt (started with a clue to a certain location where they found another clue to another location, etc.) to find a treasure chest filled with candy bags. One of the kids told his mom on the way out that it was "the best party ever," so I guess it went ok! We had 2 teenagers from the ward here as life guards. They did a great job and were incredibly helpful. Ben was the barbecue man, and I couldn't go outside at all because it was too hot, so the teenagers handled a lot of the refereeing type stuff. A few moms stayed for a while after bringing their kids over to help me get food prepared and taken outside, which was also very helpful. So all-in-all it wasn't terribly stressful, and the kids all had a really good time.
Our first week of summer was pretty good. We got a new computer for the boys. Just a desktop and a small flat-screen monitor, less than $250 for the whole thing. So the boys can play games and stuff and not be using mine all the time. Of course, now one of them uses mine all the time and another uses the other all the time! My goal is to do a limited home school agenda each day, and then let them do whatever they want the rest of the time (well, plus their daily chores). We do math and writing and reading each day, and we'll do science experiments and stuff for fun once in a while. They've been doing pretty well with that. They are happy to do schoolwork, just a little too silly sometimes, and I have to rein them in. But the computer use was a little unreasonable last week, so this week we instituted a new rule which is no computer games until after 3:00 PM. I let them go on the internet for some educational games during the day, but no regular old games until after 3. I thought I'd get a lot of resistance, but actually I got none! They accepted the rule and were happy doing other things without me nagging them at all.
On Saturday the boys had a Tae Kwon Do demonstration at a local theater just before and after a showing of "Kung Fu Panda." The movie was great, by the way. I have a pet-peeve about supposedly kids movies having more adult themes. It bugs me. Can't a kids movie just be for kids? Why do they think they need to have more "adult" themes-- do they think adults won't take their kids to the movies without them? Maybe. Anyway, Kung Fu Panda is a kids movie just for kids. It has great messages, great animation, and lots of great martial arts sequences!! The boys' TKD instructor had them perform some moves and patterns, and then had them line up to side kick boards. He brought really thick boards again, and I was doubtful. There are thin, 1/2 inch boards specifically used for karate and stuff that you can buy from martial arts suppliers, but he brought regular 3/4 inch boards from Home Depot or somewhere. Last demonstration the boys were at, he brought those as well, and I'm not sure anyone broke a board! So I was very proud of Brigham when he took his turn and BAM, broke that board right in half. He was one of only 3 or 4, I think, and definitely the youngest and smallest. He was very proud of himself too. It's a hard thing as a twin mom, to want to praise one twin, but not make the other twin feel bad. So I praised him and then quickly tried to change the subject. When we got home, Joseph got out one of the thinner boards he had broken at an earlier demonstration, and broke *that* board in half, so he could say he broke a board too.
A week ago Sunday I had to give the closing prayer for Stake Conference. I was nervous but it went well I guess. My strategy was to never actually look out onto the congregation, and I was successful in that strategy. :-) And then they gave me one of the beautiful flower arrangements afterward, so it was worth it.
Ok, so the next few things I have going on for my transplant are:
This Thursday my last MRI. I think all of us (Ben and the boys and I) will go out to Houston on Wednesday night and spend the night and then spend the day doing fun things around Houston (Children's museum, etc.), and showing the boys where the hospital is so they have some way of visualizing where I'll be. My MRI isn't until late afternoon, and then we'll drive home afterward.
Next Wednesday and Thursday I go in for the final preliminary tests, meet with an MD Anderson neurologist, sign all the final consent forms with Dr. Popat (the transplant doctor), get the catheter placed in my chest, and start the stem cell mobilization medication.
The next Monday I'll go back to Houston for the stem cell collection. This can take from 1-4 days depending on how I respond. I'm hoping for 1 day!
Then the next Friday morning we are flying to LA!!
It's all happening fast, after such a long delay, and I'm getting nervous again. I was starting to get nervous in April, too, when I thought things were coming down fast then, but this time I *really* think it's going to happen. I'm most worried about my boys. And about me missing my boys!! I'm dreading being apart from my boys a lot more than the transplant.
Ok, that's my update for tonight.
Sunday, June 08, 2008
Embarassing the dog
On Friday night the boys thought it would be a good idea to dress the dog. Luckily Mister is a very patient dog!
He looks very silly and I think he knew it. But the boys thought it was pretty hilarious.
Saturday, June 07, 2008
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