Hello Everyone,
Sorry I've been absent for so long from my email updates. I know you all have just been missing them SOOOO much, right? Right??
Things have been all right. The boys are doing great. Brigham and Joseph got their TKD green belts last night, which means they get to move up to the higher classes with some of the more advanced students, and they get to start sparring, which should be interesting! Last week, or maybe 2 weeks ago (can't remember now) Brigham got the Principal's Pride award for Curiosity. He was so cute up there, very serious. I was really happy he got this award, and so soon after Joseph got his. Things get so tricky with twins! I did notice that Brigham is almost the smallest in his class. But not really because he's particularly small, but mostly because there are some HUGE boys in his class!!! Probably some boys born in the summer whose parents held them back, so they could be more than a year older than Brigham. I guess that makes a big difference at his age. Anyway, it doesn't bother him in the least (he doesn't notice), but it was interesting to observe.
That same day Joseph had to bring in peanut butter for a class activity about "peanut butter words." Like the "layer cake words," Joseph really enjoyed the activity, and eating the results, but really didn't have a clue as to what was trying to be demonstrated by the activity. Oh well!
Mosey is still really in to reading. I haven't video'd him yet (what is the proper verb for making a digital video recording? Video-taped isn't correct, recorded isn't right either...), but mama can vouch for how well he is doing. I promise I'm not an obnoxious mom that is pushing him into it, he just seems to be really enjoying it so far. I know it's just because of all the time I spend with Joseph and Brigham reading, Mosey wants in on it too. For him, reading and spelling are a fun game.
He has left Sunshine bear in his backpack since preschool on Monday. Maybe he's moving out of the Sunshine bear stage? I'm not sure.
On Monday night I did some singing practice with the boys, having them practice matching pitch. After observing them in the Primary program, where Brigham was very enthusiastically singing, and very enthusiastically not even attempting to match pitch, I decided to see if he could actually do it. It was pretty funny. He can match pitch often enough that I know he's not tone deaf. But he doesn't really know how to control his voice very well yet. He can identify if I'm singing a note that is higher or lower than another, but he has a hard time raising and lowering his own voice to find a particular tone. Joseph can do it pretty well. Mosey didn't really get the point of the whole activity, although just from hearing him sing songs to himself, I think he can *sort of* carry a tune. But none of my kids are virtuoso singers at this point. I am comforted, though, because I distinctly remember Brigham and Benjamin as little boys, being completely unable to carry a tune, and they both grew to be very good singers. Brigham's son Elijah (I'm talking about my little brother Brigham here, not my son, obviously) is a REALLY good little singer. He's just 2 and he can carry a tune extremely well, and memorizes songs. It is so adorable to hear him. My kids are just as adorable (mommy bias), but not such musical prodigies as Elijah!
Mama came last Saturday to help me out. She surprised me by calling Friday night and announcing that she was coming in on a flight Saturday afternoon. So Saturday Ben took the big boys to Sea World to use up our 2nd day pass from last summer. It was undoubtedly the last warm Saturday of the year, as a warm front came in that day and warmed things up again until last night when it got cold again. Well, cold for us here in Austin anyway. Mosey had a birthday party so he and I did not go. I was not up for going to Sea World in any case, so Mosey and I had a good time getting a present (he picked out a little "My fur-real pet" lamb), and enjoying a princess (and prince) birthday party. There were 11 little princesses and 2 princes. Mosey really enjoyed hunting in the sand box for jewels, and the gluing them on his crown. He made himself a bead necklace (the little girl's mom very thoughtfully provided a selection of "manly" beads including battle ships, safari animals, stars, and other non-sparkly beads), and loved watching Ana Mei blow out the candles on her Disney Princess Castle birthday cake. I figure Mosey will still happily attend princess birthday parties for at least another year or so, right?
Mama came and whipped things into shape around here the past 5 days. Seriously, it was totally amazing. She completely organized my garage, which I thought for sure was like a weeks-long job. She did it in less than 2 days. She did a BUNCH of loads of laundry, cleaned my entire house, moved all the boys clothes from upstairs to downstairs in my room, cooked every meal, put the boys to bed every night, dropped them off and picked them up from school, read to them, and pretty much just took over and let me sit around and enjoy life for 5 days. It was wonderful. And one of the 5 days was Sunday, and another day was completely taken up by a trip to the San Antonio Temple and then going to the boys TKD belt graduation, so really she did all that in like two and a half days. She puts us all to shame.
My legs are getting really bad. I can't drive any more which is a pain. We're borrowing a wheel chair for our Arizona trip, and when we get home, we'll go test-drive some at a wheelchair dealership in Austin to find one that will work for us around the house. It's been pretty tough for me the past couple of weeks, wondering what is going to happen. But our bishop came last night and gave Ben and me the most amazing blessings. On par, maybe even more amazing than either of our patriarchal blessings. Immediately afterward, mama, Ben and I wrote down everything we could remember. Among other things, he blessed me that my worst fears will not happen, and that my body will heal and be able to recover from what is happening. The implication was that it may take a long time and will probably be a struggle, but that I will not always be how I am right now. He blessed us to be able to make the right decisions for my treatment, and that our house will sell soon! I don't think I would have dared to even hope for such a blessing. I don't know how all of it is going to work out, but this morning I woke up and felt completely different. My legs are still horrible, but it makes all the difference in the world to know that things won't *always* be this hard, and that I'm not going to end up bed-ridden or dying before my kids are grown. Those are the fears that have plagued me over the last few months. The information we've been able to find on my condition has not been optimistic, to say the least. But I can get through this if I know there is a light somewhere at the end of the tunnel.
The treatment we are most seriously considering at this point is an autologous bone marrow transplant. There have been a number of experimental trials, mostly in Europe, over the last 8-10 years, and the results seem to be getting better and the mortality rates from the procedure decreasing (was about 10%, but refinements in the procedure have lowered that number to less than 5%. Down to 0.8% in one study). A high percentage (60-70% in some studies) of patients actually go into remission for up to 5 years past the study, and presumably longer (the studies just didn't report results past 5 years). As luck (coincidence? divine intervention?) would have it, there is a multi-center study currently recruiting patients at 2 locations in Texas ( M.D. Anderson Cancer Center in Houston, Southwestern in Dallas), and City of Hope in CA just a short distance away from La Canada. I seem to fit all the inclusion criteria, and don't fall into any of the exclusion criteria, so I have left messages and emails with the coordinators of the study, so we'll see where it goes. The only iffy thing is the disability requirements. There is this expanded disability sliding scale (EDSS) that measures where a person falls in terms of disability. The study wants people between 3.0 and 5.5. I'm currently at a 6.5. However, 5-6 weeks ago I was at a 5.5, and I think that another blast of steroids could bump me back down to a 5.5, at least temporarily. I think that will be ok, I think they just don't want patients with permanent damage placing them at a 6.5. So while I am 6.5 right now, I think that 1 point difference is still due to inflammation, and not permanent nerve damage. But anyway, we'll see what happens.
It's kind of overwhelming to think about what would be required of my family and my ward, were I to have to be hospitalized in Houston or Dallas or CA for 2-3 months. But if it puts me into remission it is undoubtedly worth it.
Here is a link to a website for the study I'm talking about, if any of you medical/science types out there want to read about it.
http://www.halt-ms.com/forpatients.html
Ok, I better end. This is an obscenely long post, sorry. I just haven't felt this optimistic for a long time, so I thought I'd better share the happiness while I can.
We're going to AZ tomorrow evening (well, we're starting our drive to AZ tomorrow evening), so I probably won't update again for a while.
Have a great weekend everyone.
Sorry I've been absent for so long from my email updates. I know you all have just been missing them SOOOO much, right? Right??
Things have been all right. The boys are doing great. Brigham and Joseph got their TKD green belts last night, which means they get to move up to the higher classes with some of the more advanced students, and they get to start sparring, which should be interesting! Last week, or maybe 2 weeks ago (can't remember now) Brigham got the Principal's Pride award for Curiosity. He was so cute up there, very serious. I was really happy he got this award, and so soon after Joseph got his. Things get so tricky with twins! I did notice that Brigham is almost the smallest in his class. But not really because he's particularly small, but mostly because there are some HUGE boys in his class!!! Probably some boys born in the summer whose parents held them back, so they could be more than a year older than Brigham. I guess that makes a big difference at his age. Anyway, it doesn't bother him in the least (he doesn't notice), but it was interesting to observe.
That same day Joseph had to bring in peanut butter for a class activity about "peanut butter words." Like the "layer cake words," Joseph really enjoyed the activity, and eating the results, but really didn't have a clue as to what was trying to be demonstrated by the activity. Oh well!
Mosey is still really in to reading. I haven't video'd him yet (what is the proper verb for making a digital video recording? Video-taped isn't correct, recorded isn't right either...), but mama can vouch for how well he is doing. I promise I'm not an obnoxious mom that is pushing him into it, he just seems to be really enjoying it so far. I know it's just because of all the time I spend with Joseph and Brigham reading, Mosey wants in on it too. For him, reading and spelling are a fun game.
He has left Sunshine bear in his backpack since preschool on Monday. Maybe he's moving out of the Sunshine bear stage? I'm not sure.
On Monday night I did some singing practice with the boys, having them practice matching pitch. After observing them in the Primary program, where Brigham was very enthusiastically singing, and very enthusiastically not even attempting to match pitch, I decided to see if he could actually do it. It was pretty funny. He can match pitch often enough that I know he's not tone deaf. But he doesn't really know how to control his voice very well yet. He can identify if I'm singing a note that is higher or lower than another, but he has a hard time raising and lowering his own voice to find a particular tone. Joseph can do it pretty well. Mosey didn't really get the point of the whole activity, although just from hearing him sing songs to himself, I think he can *sort of* carry a tune. But none of my kids are virtuoso singers at this point. I am comforted, though, because I distinctly remember Brigham and Benjamin as little boys, being completely unable to carry a tune, and they both grew to be very good singers. Brigham's son Elijah (I'm talking about my little brother Brigham here, not my son, obviously) is a REALLY good little singer. He's just 2 and he can carry a tune extremely well, and memorizes songs. It is so adorable to hear him. My kids are just as adorable (mommy bias), but not such musical prodigies as Elijah!
Mama came last Saturday to help me out. She surprised me by calling Friday night and announcing that she was coming in on a flight Saturday afternoon. So Saturday Ben took the big boys to Sea World to use up our 2nd day pass from last summer. It was undoubtedly the last warm Saturday of the year, as a warm front came in that day and warmed things up again until last night when it got cold again. Well, cold for us here in Austin anyway. Mosey had a birthday party so he and I did not go. I was not up for going to Sea World in any case, so Mosey and I had a good time getting a present (he picked out a little "My fur-real pet" lamb), and enjoying a princess (and prince) birthday party. There were 11 little princesses and 2 princes. Mosey really enjoyed hunting in the sand box for jewels, and the gluing them on his crown. He made himself a bead necklace (the little girl's mom very thoughtfully provided a selection of "manly" beads including battle ships, safari animals, stars, and other non-sparkly beads), and loved watching Ana Mei blow out the candles on her Disney Princess Castle birthday cake. I figure Mosey will still happily attend princess birthday parties for at least another year or so, right?
Mama came and whipped things into shape around here the past 5 days. Seriously, it was totally amazing. She completely organized my garage, which I thought for sure was like a weeks-long job. She did it in less than 2 days. She did a BUNCH of loads of laundry, cleaned my entire house, moved all the boys clothes from upstairs to downstairs in my room, cooked every meal, put the boys to bed every night, dropped them off and picked them up from school, read to them, and pretty much just took over and let me sit around and enjoy life for 5 days. It was wonderful. And one of the 5 days was Sunday, and another day was completely taken up by a trip to the San Antonio Temple and then going to the boys TKD belt graduation, so really she did all that in like two and a half days. She puts us all to shame.
My legs are getting really bad. I can't drive any more which is a pain. We're borrowing a wheel chair for our Arizona trip, and when we get home, we'll go test-drive some at a wheelchair dealership in Austin to find one that will work for us around the house. It's been pretty tough for me the past couple of weeks, wondering what is going to happen. But our bishop came last night and gave Ben and me the most amazing blessings. On par, maybe even more amazing than either of our patriarchal blessings. Immediately afterward, mama, Ben and I wrote down everything we could remember. Among other things, he blessed me that my worst fears will not happen, and that my body will heal and be able to recover from what is happening. The implication was that it may take a long time and will probably be a struggle, but that I will not always be how I am right now. He blessed us to be able to make the right decisions for my treatment, and that our house will sell soon! I don't think I would have dared to even hope for such a blessing. I don't know how all of it is going to work out, but this morning I woke up and felt completely different. My legs are still horrible, but it makes all the difference in the world to know that things won't *always* be this hard, and that I'm not going to end up bed-ridden or dying before my kids are grown. Those are the fears that have plagued me over the last few months. The information we've been able to find on my condition has not been optimistic, to say the least. But I can get through this if I know there is a light somewhere at the end of the tunnel.
The treatment we are most seriously considering at this point is an autologous bone marrow transplant. There have been a number of experimental trials, mostly in Europe, over the last 8-10 years, and the results seem to be getting better and the mortality rates from the procedure decreasing (was about 10%, but refinements in the procedure have lowered that number to less than 5%. Down to 0.8% in one study). A high percentage (60-70% in some studies) of patients actually go into remission for up to 5 years past the study, and presumably longer (the studies just didn't report results past 5 years). As luck (coincidence? divine intervention?) would have it, there is a multi-center study currently recruiting patients at 2 locations in Texas ( M.D. Anderson Cancer Center in Houston, Southwestern in Dallas), and City of Hope in CA just a short distance away from La Canada. I seem to fit all the inclusion criteria, and don't fall into any of the exclusion criteria, so I have left messages and emails with the coordinators of the study, so we'll see where it goes. The only iffy thing is the disability requirements. There is this expanded disability sliding scale (EDSS) that measures where a person falls in terms of disability. The study wants people between 3.0 and 5.5. I'm currently at a 6.5. However, 5-6 weeks ago I was at a 5.5, and I think that another blast of steroids could bump me back down to a 5.5, at least temporarily. I think that will be ok, I think they just don't want patients with permanent damage placing them at a 6.5. So while I am 6.5 right now, I think that 1 point difference is still due to inflammation, and not permanent nerve damage. But anyway, we'll see what happens.
It's kind of overwhelming to think about what would be required of my family and my ward, were I to have to be hospitalized in Houston or Dallas or CA for 2-3 months. But if it puts me into remission it is undoubtedly worth it.
Here is a link to a website for the study I'm talking about, if any of you medical/science types out there want to read about it.
http://www.halt-ms.com/forpatients.html
Ok, I better end. This is an obscenely long post, sorry. I just haven't felt this optimistic for a long time, so I thought I'd better share the happiness while I can.
We're going to AZ tomorrow evening (well, we're starting our drive to AZ tomorrow evening), so I probably won't update again for a while.
Have a great weekend everyone.
3 comments:
Hey Gabrielle :) You know I don't "pray" but I'm always hoping good thoughts for you and your family, in my own way. I hope this trial works out for you
Gaby - I have been thinking about you the last little while and wanted to send you a little note. I don't always comment on your blog and try and read it when I get a chance, but I do admire you. You are an amazing mother! I am glad you possibly found a place to do the treatments. We are praying for you guys and would love to do anything possible for you. Have fun in AZ!!
It was great to have ben in our house last week. He is the first hometeacher we have had in 2 years to come over so it was nice that he would take time away from you and your boys to come and see us.
Paige
Hey Gabby,
I found your blog through Kelly's, and I'm so glad! I just wanted to let you know how much I admire you. I remember my first week in church, thinking you were so smart whenever you made comments in Sunday school :) It was fun to get to know you the other day on the way to the airport. Thanks for thinking to call me that day! Sorry I'm kind of a scary driver. I'm not always like that, I promise!
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