Rita did great during the bone marrow biopsy today. She said she had no pain during the procedure - just some mild discomfort. I think that Joann the nurse practitioner that did the procedure was more nervous than Rita due to all of Rita's questions and concerns. She talked Rita through the entire procedure and made sure that the nurse that was giving her the meds, Sandra, gave her enough to keep her comfortable. After it was over, Joann hugged Rita and told her what a great job she did. Rita said thanks and then asked when she could have some coffee and what were we having for dinner. Typical Rita - like what's the big deal?!! Now, its just a waiting game once again until we get the results - hopefully by Friday.
All of Rita's numbers continue to be right where they are supposed to be and Rita is feeling good. We don't have to go to the clinic tomorrow so I propable won't have any news until Friday - I'll post then to let you all know the results.
Take care, Dave & Rita
Wednesday, March 30, 2011
Tuesday, March 29, 2011
Day 244 BMT 34
Hi Folks,
Just a quick update before we go into tomorrow and the first bone marrow biopsy since the stem cell transplant. Rita is a little apprehensive about this because they do it a little differently in the BMT clinic than she is used to. They don't give her all of the meds that she is used to getting and she is worried that it will hurt. They have tried to reasure her but, as I am sure you can understand, she won't know until it actually happens. She always asks them "have you ever had it done?" Only Dr. McCarthy has had one - for reasearch - and he said it wasn't bad at all. By the look on her face, I don't think she believed him. Anyway,it's going to be a big day eventhough we probably won't get the results until Friday.
Everything continues to go well. Rita is feeling good and continues to exercise and gain strength. She is walking, doing a stair stepper and doing the tread mill in the hotel's exercise room. The more she works out, the better her appetite seems to be. Snacks are more frequent and meal portions a little bigger. She is still quite slim but slowly gaining back soome of what she has lost. Maybe I'll even get into better shape as I try to stay up with her.
So, tonight will be quiet and hopefully Rita will get a good nights rest. By late tomorrow morning, it will all be behind her.
So, Goodnight for now, Dave & Rita
Just a quick update before we go into tomorrow and the first bone marrow biopsy since the stem cell transplant. Rita is a little apprehensive about this because they do it a little differently in the BMT clinic than she is used to. They don't give her all of the meds that she is used to getting and she is worried that it will hurt. They have tried to reasure her but, as I am sure you can understand, she won't know until it actually happens. She always asks them "have you ever had it done?" Only Dr. McCarthy has had one - for reasearch - and he said it wasn't bad at all. By the look on her face, I don't think she believed him. Anyway,it's going to be a big day eventhough we probably won't get the results until Friday.
Everything continues to go well. Rita is feeling good and continues to exercise and gain strength. She is walking, doing a stair stepper and doing the tread mill in the hotel's exercise room. The more she works out, the better her appetite seems to be. Snacks are more frequent and meal portions a little bigger. She is still quite slim but slowly gaining back soome of what she has lost. Maybe I'll even get into better shape as I try to stay up with her.
So, tonight will be quiet and hopefully Rita will get a good nights rest. By late tomorrow morning, it will all be behind her.
So, Goodnight for now, Dave & Rita
Saturday, March 26, 2011
Day 241 BMT 31
Hi everyone, it's Sherry giving an update of Eva's and my visit. You can't imagine how excited we were to see Rita and Dave. From the minute we got here, we have been laughing, eating and drinking-Burp! As you know Rita, there was an abundance of food; yet, we ordered pizza and wings for dinner. Needless to say, our order was messed up and it came in two orders. However, we did get a free pizza (we're not sure if there was spit on it--long story) so we ate well. This morning, the refrigerate fought Dave, as bottles and food came tumbling out from overload. Don't worry, he didn't get hurt. Of course, Rita doesn't let him throw anything away. If there were homeless people hanging around, they would have hit the lottery!
Last night all of us let our hair down...we are making a CD of "Rita's All TimeFavorite Songs". Dave tried to sneak his songs in, so we told him maybe we could make one for him called "Not Rita's Favorite Songs, but DAVES!" Our night was nostalgia and we all searched our memories, sometimes with no sucess-HA HA. If these sell millions, we're considering a Christman Album. Stay tuned...
Anyway, Wayne sent Dave Seagrams 7, so he was enlightened by an invisible guitar during our campfire sing-a-long. Wayne even graced us with a joke about him and Dave golfing. Long story short: he's Dave's eyes (since they are getting old), and on the next golf shot, Dave asks where the ball went--Wayne states, I can't remember!!! Sounds like our daily lives...
Most importantly, please know that Rita is progressing faster than expected. The doctors comment on her rosy cheeks, lipstick, and designer clothes (if there is such a thing for polka-dot PJs). Yesterday, she had real good numbers so the doctors said to have a great time with your sisters. We stayed up til 11:30 until Dave told us to shut up. We kicked him out of the bedroom, so we could keep whispering. Prayers said by all--sweet dreams.
It brought back memories of us all sleeping in one bed when we were kids...these beds were much more comfortable--believe me. Oh yeah, I almost forgot to mention that we did some of Rita's exercises--she's much better than me. She practically runs around now, which is a huge improvement from the last visit.
In any event, I know that GOD is watching over them. Dave has angel wings so we all are blessed to have him taking such great care of Rita. She doesn't get away with anything when he's around.
Lastly, I personally want to thank everyone for all your support during this trying time for the Lemieux/Briggs family. You never know what will happen in your life... It is heartfelt to have so many wonderful friends to lean on. Words cannot express my graditude.
Last night all of us let our hair down...we are making a CD of "Rita's All TimeFavorite Songs". Dave tried to sneak his songs in, so we told him maybe we could make one for him called "Not Rita's Favorite Songs, but DAVES!" Our night was nostalgia and we all searched our memories, sometimes with no sucess-HA HA. If these sell millions, we're considering a Christman Album. Stay tuned...
Anyway, Wayne sent Dave Seagrams 7, so he was enlightened by an invisible guitar during our campfire sing-a-long. Wayne even graced us with a joke about him and Dave golfing. Long story short: he's Dave's eyes (since they are getting old), and on the next golf shot, Dave asks where the ball went--Wayne states, I can't remember!!! Sounds like our daily lives...
Most importantly, please know that Rita is progressing faster than expected. The doctors comment on her rosy cheeks, lipstick, and designer clothes (if there is such a thing for polka-dot PJs). Yesterday, she had real good numbers so the doctors said to have a great time with your sisters. We stayed up til 11:30 until Dave told us to shut up. We kicked him out of the bedroom, so we could keep whispering. Prayers said by all--sweet dreams.
It brought back memories of us all sleeping in one bed when we were kids...these beds were much more comfortable--believe me. Oh yeah, I almost forgot to mention that we did some of Rita's exercises--she's much better than me. She practically runs around now, which is a huge improvement from the last visit.
In any event, I know that GOD is watching over them. Dave has angel wings so we all are blessed to have him taking such great care of Rita. She doesn't get away with anything when he's around.
Lastly, I personally want to thank everyone for all your support during this trying time for the Lemieux/Briggs family. You never know what will happen in your life... It is heartfelt to have so many wonderful friends to lean on. Words cannot express my graditude.
Friday, March 25, 2011
Day 240 BMT 30
It has been a good week. Rita has had clinic visits on Monday, Wednesday and today and each time all of her numbers look great. The BMT team continues to be very happy with her progress. Now she has the weekend off so she is feeling pretty good about that. Sherry and Eva are here and they are all enjoying each other's company. I don't know how they do it but right now, I can hear all of their voices at the same time. It's truly amazing. It looks like it will be a fun time and I plan on just trying to stay out of the way.
There is not much else to report and I guess that is a good thing. We will be back to the clinic Monday morning and then, the bone marrow biopsy on Wednesday. Hopefully, we will have more good news by next Friday. I'll keep you all posted if anything changes. Otherwise, I hope you all enjoy your weekend.
Take care, Dave & Rita
There is not much else to report and I guess that is a good thing. We will be back to the clinic Monday morning and then, the bone marrow biopsy on Wednesday. Hopefully, we will have more good news by next Friday. I'll keep you all posted if anything changes. Otherwise, I hope you all enjoy your weekend.
Take care, Dave & Rita
Monday, March 21, 2011
Day 236 BMT 26
Well, here we are on day 26 post transplant. Rita is still supposed to be in the hospital but, has been out since day 22. We have gone to the BMT clinic as an outpatient each day and have had good reports each day. When they discharged Rita they told us to expect to go to the BMT clinic every day for at least one week and then they would see what we would need to do after that. So, as you might expect, Rita continues to exceed each goal as we go along. Today, they changed her scheduled visits to the BMT clinic from every day to three time per week - Mondays, Wednesdays and Fridays. Of course, all of this is subject to change depending on how Rtia is doing at the time but, once again, she is ahead of schedule. The entire team of doctors, nurses and provider assistants all seem to be very pleased with her progress. I can tell you that she is working very hard to "be the best patient ever"!!
Rita is scheduled for another bone marrow biopsy on March 30th. That will be the first time since the transplant that they will actually be able to tell for sure if her graft is taking hold and that her new immune system is a result of the graft cells and not her old immune system. Needless to say, this will be really important so, as we have said so many times, keep the prayers coming.
Sherry and Eva are coming out to visit on Friday and will stay over with us Friday night. Rita is really looking forward to seeing them and catching up on all of the things she has been missing. I bet that I'll be able to count the number of words that I get in on one hand. I'm just hoping that they don't call a "ladies night" and send me packing to a couch in the lobby!! If I am allowed to stay, I'm sure I'll learn alot.
Today, after the clinic, we took a little walk and were able to look outside at the garden area in the courtyard of the hospital. Rtia could see the little green sprouts of the daffodils and tulips starting to grow. It gives us both hope of the renewal of life that takes place in the springtime. I am starting to see the signs of renewal in Rita - its going to be a great spring, a healing and strengthening summer and wonderful life ahead of us. We have all of you, and many other people that we don't even know, to thank for that and we are humbled by all of your support.
Thank you so much, Dave & Rita
Rita is scheduled for another bone marrow biopsy on March 30th. That will be the first time since the transplant that they will actually be able to tell for sure if her graft is taking hold and that her new immune system is a result of the graft cells and not her old immune system. Needless to say, this will be really important so, as we have said so many times, keep the prayers coming.
Sherry and Eva are coming out to visit on Friday and will stay over with us Friday night. Rita is really looking forward to seeing them and catching up on all of the things she has been missing. I bet that I'll be able to count the number of words that I get in on one hand. I'm just hoping that they don't call a "ladies night" and send me packing to a couch in the lobby!! If I am allowed to stay, I'm sure I'll learn alot.
Today, after the clinic, we took a little walk and were able to look outside at the garden area in the courtyard of the hospital. Rtia could see the little green sprouts of the daffodils and tulips starting to grow. It gives us both hope of the renewal of life that takes place in the springtime. I am starting to see the signs of renewal in Rita - its going to be a great spring, a healing and strengthening summer and wonderful life ahead of us. We have all of you, and many other people that we don't even know, to thank for that and we are humbled by all of your support.
Thank you so much, Dave & Rita
Thursday, March 17, 2011
Day 232 BMT Day 22
Wow, what a long day! When we woke this morning, we weren't sure whether Mom would be discharged. Her blood pressure was acting a little funny, but we were told that this was an issue that could be managed on an outpatient basis so it was still likely we would be set free. The reason this was so important was because the hospital won't discharge on a Friday, on the weekend, or on a Monday... so if she didn't get cut loose today it would be five more days before they could consider releasing her.
She did, in fact, get released. The day is pretty much summed up by a quote from Sir William Wallace, made famous by Lisa on an especially eventful St. Patrick's Day (ironically) three years ago... "FREEDOM!!!"
So we talked to pretty much everyone that works at the hospital in order to get signed off to leave. It was a lot of information, but we did learn a lot and some of the food restrictions didn't end up being nearly as bad as Mom originally thought.
The trek back to the hotel was pretty interesting. First off, anyone who's ever seen theWill Ferrell movie "Elf" knows about how he got to NYC from the North Pole - you have to pass through the seven levels of the Candy Cane Forest, through the sea of swirly twirly gumdrops, and then walk through the Lincoln Tunnel. This is the most accurate way I can describe how you get from the hospital to the hotel.
Anyone who knows Mom (and why would you be reading this if you didn't...) knows that she is perpetually prepared with multiples of every possible item that anyone could ever think of needing. If someone ever asked Mom what she would bring on a desert island if she had only one choice she would fight until she was blue in the face to get that particular someone to agree to allow her unlimited items. It's just her style.
Now, put those last two paragraphs together. In short - if anyone is looking for some Christmas gift ideas for the Briggs family, we could use some donkey baskets. And a donkey.
For the rest of the day, Mom got to do whatever she wanted. We went and celebrated at Red Lobster and then went shopping at Mom's favorite store (one of the 100 favorite stores), Stein Mart. When I'm telling you I have no idea how she does it, I have NO idea how she does it. I am straight up whooped. I haven't even had so much as a runny nose for the past three months. Here Mom is, fresh off a Stem Cell Transplant and eight months of battling Leukemia and she's the one telling ME to sit down and take a breather. Granted, Red Lobster and shopping are probably two of the best motivators for Mom, but wow. She's just amazing.
She's tucked in for the night now and we'll be getting up early to get to the clinic by 7am. She has to go every day for probably a week and then they'll start putting her on a schedule that includes some days off.
Thank you all for the continued support and prayers. It's working. Big time.
Love,
Amy
She did, in fact, get released. The day is pretty much summed up by a quote from Sir William Wallace, made famous by Lisa on an especially eventful St. Patrick's Day (ironically) three years ago... "FREEDOM!!!"
So we talked to pretty much everyone that works at the hospital in order to get signed off to leave. It was a lot of information, but we did learn a lot and some of the food restrictions didn't end up being nearly as bad as Mom originally thought.
The trek back to the hotel was pretty interesting. First off, anyone who's ever seen theWill Ferrell movie "Elf" knows about how he got to NYC from the North Pole - you have to pass through the seven levels of the Candy Cane Forest, through the sea of swirly twirly gumdrops, and then walk through the Lincoln Tunnel. This is the most accurate way I can describe how you get from the hospital to the hotel.
Anyone who knows Mom (and why would you be reading this if you didn't...) knows that she is perpetually prepared with multiples of every possible item that anyone could ever think of needing. If someone ever asked Mom what she would bring on a desert island if she had only one choice she would fight until she was blue in the face to get that particular someone to agree to allow her unlimited items. It's just her style.
Now, put those last two paragraphs together. In short - if anyone is looking for some Christmas gift ideas for the Briggs family, we could use some donkey baskets. And a donkey.
For the rest of the day, Mom got to do whatever she wanted. We went and celebrated at Red Lobster and then went shopping at Mom's favorite store (one of the 100 favorite stores), Stein Mart. When I'm telling you I have no idea how she does it, I have NO idea how she does it. I am straight up whooped. I haven't even had so much as a runny nose for the past three months. Here Mom is, fresh off a Stem Cell Transplant and eight months of battling Leukemia and she's the one telling ME to sit down and take a breather. Granted, Red Lobster and shopping are probably two of the best motivators for Mom, but wow. She's just amazing.
She's tucked in for the night now and we'll be getting up early to get to the clinic by 7am. She has to go every day for probably a week and then they'll start putting her on a schedule that includes some days off.
Thank you all for the continued support and prayers. It's working. Big time.
Love,
Amy
Wednesday, March 16, 2011
Day 231 BMT Day 21
Well, today didn't go quite as planned. I'll start from the beginning.
It was a dark and dreary night. The rain was tapping at the window and the night nurses were practicing talking so loudly that the patients couldn't sleep. The room was a sweltering 89 degrees. It was 4 am and the nurse came in to check vitals... and her blood pressure was low...
Mom didn't sleep well at all last night. She just didn't feel rested or at ease today. Not the best state to be in when you're supposed to pay attention to the 15 people that have to counsel you prior to discharge, then trek back to the hotel. It just felt off right from the get go.
As it turns out, Mom became ortho-static again. The doctors aren't concerned that there's any major problem, but just wanted to keep her for another day just in case. Mom was ok with it. It's better than being discharged and re-admitted the next day. She also had her first dip in her numbers. This isn't a big deal and is to be expected, but she did have to have a Human Growth Hormone shot. These are pretty painful, so Mom was not too thrilled about it. She was an excellent sport, though.
So the plan now is for discharge tomorrow. Since they won't release patients on Fridays or weekends, Mom was very focused on making sure she'd be in a position to leave tomorrow. She drank a lot of fluid and did an bicycle-stepper-thingy for 25 minutes on level 6!! What a champ.
Everything else went fine for the rest of the day. Dad went back to Utica for some meetings and Mom and I watched American Idol with some popcorn. She's very tired from a long day so she zonked out pretty soon after it was over (I'm pretty sure she dozed off in between performances). Hopefully she gets a good night's sleep and is raring to go for tomorrow's big move (fingers crossed!).
I'll update everyone tomorrow when we know more.
Love,
Amy
It was a dark and dreary night. The rain was tapping at the window and the night nurses were practicing talking so loudly that the patients couldn't sleep. The room was a sweltering 89 degrees. It was 4 am and the nurse came in to check vitals... and her blood pressure was low...
Mom didn't sleep well at all last night. She just didn't feel rested or at ease today. Not the best state to be in when you're supposed to pay attention to the 15 people that have to counsel you prior to discharge, then trek back to the hotel. It just felt off right from the get go.
As it turns out, Mom became ortho-static again. The doctors aren't concerned that there's any major problem, but just wanted to keep her for another day just in case. Mom was ok with it. It's better than being discharged and re-admitted the next day. She also had her first dip in her numbers. This isn't a big deal and is to be expected, but she did have to have a Human Growth Hormone shot. These are pretty painful, so Mom was not too thrilled about it. She was an excellent sport, though.
So the plan now is for discharge tomorrow. Since they won't release patients on Fridays or weekends, Mom was very focused on making sure she'd be in a position to leave tomorrow. She drank a lot of fluid and did an bicycle-stepper-thingy for 25 minutes on level 6!! What a champ.
Everything else went fine for the rest of the day. Dad went back to Utica for some meetings and Mom and I watched American Idol with some popcorn. She's very tired from a long day so she zonked out pretty soon after it was over (I'm pretty sure she dozed off in between performances). Hopefully she gets a good night's sleep and is raring to go for tomorrow's big move (fingers crossed!).
I'll update everyone tomorrow when we know more.
Love,
Amy
Tuesday, March 15, 2011
Day 230 BMT Day 20
Hi Everyone,
Today was a pretty good day (relatively speaking, of course). Mom's numbers continue to improve to the point that she's still on track to be discharged from the hospital to the hotel room tomorrow. Both her visit with her NP and her Doctor went really well and she got gold stars from both of them.
Today her Nurse Katarina did a "mock discharge" with Mom. It's pretty clear that she understands the importance of giving Mom plenty of time to soak in the information and ask questions. She just went through what Mom can expect for the discharge. Of course, with the way Mom works, we also ended up learning all about what to expect for the next year (well, that might be a stretch... but I think we got up to Thanksgiving Dinner before it was time for Katarina to punch out for the night).
As long as Mom's on immuno-suppressants (these keep her own body from fighting off the donor's system too aggressively) then she will be limited in her activities. We learned that Mom will NOT be allowed to clean at home for a little while. For most people this would be cause for a celebration, but Mom is pretty bummed. She went through the whole gambit of her routine in hopes that there was SOMETHING she could do to keep the house tidy. She did end up hitting the jackpot with two things - laundry and unloading a clean dishwasher. I offered to bring mine over for her to do since she was so dang excited. (I'm joking... I only just thought of that and she's asleep so maybe I'll have to run it by her in the morning!)
Another thing Mom is going to have to go without is her gardening. She is allowed to water on days that aren't too windy as long as she has sneakers and a mask on. And a ton of sunblock. And a long sleeved shirt. And a hat. For all of you amateur sleuths out there that haven't figured it out with these last 3 clues - she also can't be in the sun. Or the pool. At least for a little while.
The day kind of went like that last paragraph. It was like one big flowchart. She can do activities that don't expose her to soil, standing water, any unnecessary germs, etc. There are a lot of caveats and we will have to use a lot of common sense to keep her safe from infection for the time being. This is definitely a challenge we're ready to meet. Although... we may have to borrow some common sense from some of you as we are all pretty fried in the brain department these days.
Mom is understandably upset about some of these restrictions. It's hard to see the forest for the trees when you can't get a solid timeline. If someone could just tell her she can prune and water her plants, drive her car and maybe dip her feet in the pool I think a lot of the frustration would be easier to manage. She was a little blue for these conversations. Luckily, Aunt Bettie sent me to Buffalo with one of the neatest presents for Mom and it sure came in handy. It's a jar full of "pick-me-ups" and Mom was instructed to pull one out whenever she is feeling sad (we're not cheating, I promise!). I grabbed the jar as soon as Katarina left and we gave it a shot. She pulled out "You are a wise shopper". Isn't that the truth. It really brought a smile to Mom's face and made her feel proud - you all know how meaningful of a compliment that is to Mom. I have a feeling this pick-me-up-jar is going to be pretty clutch.
Mom was hilarious, adorable, charming, inquisitive (surprise!) and she's already decided she'll fill her time with other things that she CAN do. Like sewing, painting, playing the piano, tap-dancing (joking!) and catching up on all the re-runs of the "Real Housewives of Orange County" (not joking!). She's also informed me that she has mounds of magazines in hiding spots (so that Dad doesn't get mad at her) and she's looking forward to reading them. I'm talking stockpiles of things like "Good Housekeeping" from 1986 with Olivia Newton-John on the cover. I think she'll have plenty to keep her busy... Hopefully she doesn't end up buying a big teased-hair wig, blue eyeshadow, frosted pink lipstick and giant shoulder-pads or Lisa and I may have to intervene.
She's really looking forward to getting out tomorrow. She will have to go to the clinic every day for at least a week and then the visits will get fewer and farther between until she is ready to be sent packing back home. We're still on track for this to take 100 days total from the transplant, so 80 more days from here.
Hope you all have a good night and keep those prayers coming!
Love,
Amy
Today was a pretty good day (relatively speaking, of course). Mom's numbers continue to improve to the point that she's still on track to be discharged from the hospital to the hotel room tomorrow. Both her visit with her NP and her Doctor went really well and she got gold stars from both of them.
Today her Nurse Katarina did a "mock discharge" with Mom. It's pretty clear that she understands the importance of giving Mom plenty of time to soak in the information and ask questions. She just went through what Mom can expect for the discharge. Of course, with the way Mom works, we also ended up learning all about what to expect for the next year (well, that might be a stretch... but I think we got up to Thanksgiving Dinner before it was time for Katarina to punch out for the night).
As long as Mom's on immuno-suppressants (these keep her own body from fighting off the donor's system too aggressively) then she will be limited in her activities. We learned that Mom will NOT be allowed to clean at home for a little while. For most people this would be cause for a celebration, but Mom is pretty bummed. She went through the whole gambit of her routine in hopes that there was SOMETHING she could do to keep the house tidy. She did end up hitting the jackpot with two things - laundry and unloading a clean dishwasher. I offered to bring mine over for her to do since she was so dang excited. (I'm joking... I only just thought of that and she's asleep so maybe I'll have to run it by her in the morning!)
Another thing Mom is going to have to go without is her gardening. She is allowed to water on days that aren't too windy as long as she has sneakers and a mask on. And a ton of sunblock. And a long sleeved shirt. And a hat. For all of you amateur sleuths out there that haven't figured it out with these last 3 clues - she also can't be in the sun. Or the pool. At least for a little while.
The day kind of went like that last paragraph. It was like one big flowchart. She can do activities that don't expose her to soil, standing water, any unnecessary germs, etc. There are a lot of caveats and we will have to use a lot of common sense to keep her safe from infection for the time being. This is definitely a challenge we're ready to meet. Although... we may have to borrow some common sense from some of you as we are all pretty fried in the brain department these days.
Mom is understandably upset about some of these restrictions. It's hard to see the forest for the trees when you can't get a solid timeline. If someone could just tell her she can prune and water her plants, drive her car and maybe dip her feet in the pool I think a lot of the frustration would be easier to manage. She was a little blue for these conversations. Luckily, Aunt Bettie sent me to Buffalo with one of the neatest presents for Mom and it sure came in handy. It's a jar full of "pick-me-ups" and Mom was instructed to pull one out whenever she is feeling sad (we're not cheating, I promise!). I grabbed the jar as soon as Katarina left and we gave it a shot. She pulled out "You are a wise shopper". Isn't that the truth. It really brought a smile to Mom's face and made her feel proud - you all know how meaningful of a compliment that is to Mom. I have a feeling this pick-me-up-jar is going to be pretty clutch.
Mom was hilarious, adorable, charming, inquisitive (surprise!) and she's already decided she'll fill her time with other things that she CAN do. Like sewing, painting, playing the piano, tap-dancing (joking!) and catching up on all the re-runs of the "Real Housewives of Orange County" (not joking!). She's also informed me that she has mounds of magazines in hiding spots (so that Dad doesn't get mad at her) and she's looking forward to reading them. I'm talking stockpiles of things like "Good Housekeeping" from 1986 with Olivia Newton-John on the cover. I think she'll have plenty to keep her busy... Hopefully she doesn't end up buying a big teased-hair wig, blue eyeshadow, frosted pink lipstick and giant shoulder-pads or Lisa and I may have to intervene.
She's really looking forward to getting out tomorrow. She will have to go to the clinic every day for at least a week and then the visits will get fewer and farther between until she is ready to be sent packing back home. We're still on track for this to take 100 days total from the transplant, so 80 more days from here.
Hope you all have a good night and keep those prayers coming!
Love,
Amy
Monday, March 14, 2011
Day 229 BMT Day 19
Hi Everyone!
I'm back out in Buffalo to give Dad a well deserved break. And by break I mean trying to cram a conference and 3 months of work into 4 days so he can get back to being Mom's errand boy. She's definitely making sure he's not bored.
Mom had to get her 5 lumen port replaced with a double lumen today. This will help reduce possible points of infection, so it was important... but not the easiest for Mom. Throughout this whole process she has rarely complained about anything but the pills. This whole lumen switching business was pretty uncomfortable for her so she's a little sore, but otherwise her spirits and her blood counts are both up!
She was in rare form tonight. I wish I could have video taped her conversation with her Nurse, Donna - Donna really brings out the hilarious in Mom. There is something about her that begs for Mom to tell her any random story she can think of. She's a really good sport. Mom is really fighting the "chemo brain". She's sharp as a tack but every once in a while she gets a hiccup that stops her train of thought in its tracks. She was very concerned earlier that she had Alzheimer's because she can't remember her favorite nurse's name (It's Pam, but it could be Jane or Agnes depending on Mom's mood). "At 59 years old! How could I possibly be getting this already?!" Out of all the things to stress about...
In the time I've been writing this blog, Mom has gotten Donna up to speed on her relationship with Dad and how much he's done for her (and how much she's done for him, of course), growing up with 9 siblings and the hardships they faced, how smart Dad is (that took a really long time), and she finished it up with all of the things she's noticed during her stay that could really use some improvement - manuals, for instance. There should be manuals about what to expect. Kind of like a "What to Expect When You Are Expecting - To be Treated for Leukemia... For Dummies?". Let's just throw all the books into one useful resource - that will be mine and Lisa's project when this is all over.
Anyway, word on 6 North Avenue is that Mom's going to be discharged from the hospital to the hotel on Wednesday. This will be day 21 since the Stem Cell Transplant. Patients typically have to stay for at least 30 days, so this is a pretty big deal and we are very excited. She'll still have to stay the entire remainder of the 100 days within 20 minutes of the facility, but at least she'll be in the hotel. The main nurse on the floor (Agnes?... no, no... Dr. Ron? Dr. Ran? - another hiccup I guess) gave Mom a gold star. Not literally... she just bestowed "gold star" status on her. We have found gold stars to be useful in motivating Mom. Hey, whatever works.
Keep your fingers crossed and keep the prayers coming, please!
Love,
Amy
I'm back out in Buffalo to give Dad a well deserved break. And by break I mean trying to cram a conference and 3 months of work into 4 days so he can get back to being Mom's errand boy. She's definitely making sure he's not bored.
Mom had to get her 5 lumen port replaced with a double lumen today. This will help reduce possible points of infection, so it was important... but not the easiest for Mom. Throughout this whole process she has rarely complained about anything but the pills. This whole lumen switching business was pretty uncomfortable for her so she's a little sore, but otherwise her spirits and her blood counts are both up!
She was in rare form tonight. I wish I could have video taped her conversation with her Nurse, Donna - Donna really brings out the hilarious in Mom. There is something about her that begs for Mom to tell her any random story she can think of. She's a really good sport. Mom is really fighting the "chemo brain". She's sharp as a tack but every once in a while she gets a hiccup that stops her train of thought in its tracks. She was very concerned earlier that she had Alzheimer's because she can't remember her favorite nurse's name (It's Pam, but it could be Jane or Agnes depending on Mom's mood). "At 59 years old! How could I possibly be getting this already?!" Out of all the things to stress about...
In the time I've been writing this blog, Mom has gotten Donna up to speed on her relationship with Dad and how much he's done for her (and how much she's done for him, of course), growing up with 9 siblings and the hardships they faced, how smart Dad is (that took a really long time), and she finished it up with all of the things she's noticed during her stay that could really use some improvement - manuals, for instance. There should be manuals about what to expect. Kind of like a "What to Expect When You Are Expecting - To be Treated for Leukemia... For Dummies?". Let's just throw all the books into one useful resource - that will be mine and Lisa's project when this is all over.
Anyway, word on 6 North Avenue is that Mom's going to be discharged from the hospital to the hotel on Wednesday. This will be day 21 since the Stem Cell Transplant. Patients typically have to stay for at least 30 days, so this is a pretty big deal and we are very excited. She'll still have to stay the entire remainder of the 100 days within 20 minutes of the facility, but at least she'll be in the hotel. The main nurse on the floor (Agnes?... no, no... Dr. Ron? Dr. Ran? - another hiccup I guess) gave Mom a gold star. Not literally... she just bestowed "gold star" status on her. We have found gold stars to be useful in motivating Mom. Hey, whatever works.
Keep your fingers crossed and keep the prayers coming, please!
Love,
Amy
Sunday, March 13, 2011
Day 228 BMT 18
Well, we are in a new room. We were told yesterday that they needed Rita's bed for a new transplant patient that was coming in on 5 East. When that happens, they take only the patients that are doing well and move them to their step down unit on 6 North. Our NP Pam said that since Rita was the gold star patient on 5 East, we would have to move. We moved yesterday afternoon to room 17 on 6 North. The room is smaller but hopefully we will only be here for a few days. They still keep saying that Rita will be able to go over the the hotel sometime this week.
Rita's numbers continue to improve on a day to day basis. The first opportunity to officially determine if the graft is working will be when they do another bone marrow biopsy on day 30. We look forward to receiving good news at that time.
Since Rita is doing so well, Amy will be coming out Monday evening and I have a conference to attend here in Buffalo on Tuesday and Wednesday. Then, Wednesday evening I will go back home and go to work on Thursday and Friday returning to Buffalo Friday afternoon. While there is always the chance that a complication could arise, we are hopeful that Rita will continue to be "the best patient ever" as she says.
So, so long for now - Rita & Dave
Rita's numbers continue to improve on a day to day basis. The first opportunity to officially determine if the graft is working will be when they do another bone marrow biopsy on day 30. We look forward to receiving good news at that time.
Since Rita is doing so well, Amy will be coming out Monday evening and I have a conference to attend here in Buffalo on Tuesday and Wednesday. Then, Wednesday evening I will go back home and go to work on Thursday and Friday returning to Buffalo Friday afternoon. While there is always the chance that a complication could arise, we are hopeful that Rita will continue to be "the best patient ever" as she says.
So, so long for now - Rita & Dave
Friday, March 11, 2011
Day 226 BMT 16
Good Evening,
Just a quick update. Rita is doing very well. Her numbers have recovered to the point that she is no longer neutropenic which is an important milestone. Hopefully, this trend up in her numbers will continue.
Lisa and Amy came out for their caregiver orientation and is was really great to see them. We didn't have a lot of time together but, it was so good to be able to be together again. We can hardly wait until we can be back home so that we can be close to our family once again. It won't be long now.
We hope you all have a good weekend and that soon, we will all see the signs of spring and a renewal of life. This just may be the best spring of our lives!!
So, goodnight for now - Rita & Dave
Just a quick update. Rita is doing very well. Her numbers have recovered to the point that she is no longer neutropenic which is an important milestone. Hopefully, this trend up in her numbers will continue.
Lisa and Amy came out for their caregiver orientation and is was really great to see them. We didn't have a lot of time together but, it was so good to be able to be together again. We can hardly wait until we can be back home so that we can be close to our family once again. It won't be long now.
We hope you all have a good weekend and that soon, we will all see the signs of spring and a renewal of life. This just may be the best spring of our lives!!
So, goodnight for now - Rita & Dave
Wednesday, March 9, 2011
DAY 224 BMT 14
Hello,
Rita has had 4 days in a row that her numbers have improved so, the doctors feel confident that her new immune system is starting to take hold. So far, no sign of rejection or graft vs. host disease (GVHD) and that is very good. She is feeling good and continues to exercise to gain strength and endurance. Someone told her a few days ago that some people actually get out early if they are doing good. Well, needless to say, she is really focused on being in that group. She is already talking about being out by day 25 instead of day 30. My money's on Rita!!
Rita did need a unit of blood this morning which is perfectly normal. They say the last thing to come back is the red blood cells and that is why they were a little low today. We hope that by the end of the week, she will no longer be neutropenic and therefore, less susceptible to infection. If that is the case and there is no significant GVHD, we may be able to get over to the hotel next week. Fingers are crossed.
That's it for now - all in all, things are going very well and we pray that they continue on the same course.
Take Care, Dave & Rita
Rita has had 4 days in a row that her numbers have improved so, the doctors feel confident that her new immune system is starting to take hold. So far, no sign of rejection or graft vs. host disease (GVHD) and that is very good. She is feeling good and continues to exercise to gain strength and endurance. Someone told her a few days ago that some people actually get out early if they are doing good. Well, needless to say, she is really focused on being in that group. She is already talking about being out by day 25 instead of day 30. My money's on Rita!!
Rita did need a unit of blood this morning which is perfectly normal. They say the last thing to come back is the red blood cells and that is why they were a little low today. We hope that by the end of the week, she will no longer be neutropenic and therefore, less susceptible to infection. If that is the case and there is no significant GVHD, we may be able to get over to the hotel next week. Fingers are crossed.
That's it for now - all in all, things are going very well and we pray that they continue on the same course.
Take Care, Dave & Rita
Monday, March 7, 2011
Day 222 BMT 12
Good Evening,
All is well out on the western front!! Rita continues to do well and her numbers are starting to creep up. We think that this is the beginning of her new immune system developing as we have had 3 ticks up in a row. We hope to see another tick up tomorrow. They take Rita's blood at 4 AM and we usually know the results by 6 AM. We always look forward to getting the report and that tells us what will be needed each day. We can pretty much tell how the day will go based on these numbers. There is alsway the chance that Rita will develop a temperature or have some other complication but, so far, she has been able to avoid those complications. I think that it has been because of the fact that she is excercising a lot and doing all of the things that they recommend for infection fighting. She always pays strict attention to her oral treatments and I think that has been really important. When you think of it, a lot gets introduced to your body through your mouth, so we will continue to stay on top of this.
It's getting to the time in the process when we start to confirm that the graft has taken hold, that there is no rejection and that there is no significant graft vs. host disease happening. Rita has done all that she can to help the outcome be positive so now, it's in God's hands. We trust that, with all of your prayers, she will be rewarded with a complete recovery and be curred of this disease. As you can see, you have all played an important role in getting us this far, so, keep up the prayers and positive thoughts until we cross the finish line.
Thanks Folks - Love, Dave & Rita
All is well out on the western front!! Rita continues to do well and her numbers are starting to creep up. We think that this is the beginning of her new immune system developing as we have had 3 ticks up in a row. We hope to see another tick up tomorrow. They take Rita's blood at 4 AM and we usually know the results by 6 AM. We always look forward to getting the report and that tells us what will be needed each day. We can pretty much tell how the day will go based on these numbers. There is alsway the chance that Rita will develop a temperature or have some other complication but, so far, she has been able to avoid those complications. I think that it has been because of the fact that she is excercising a lot and doing all of the things that they recommend for infection fighting. She always pays strict attention to her oral treatments and I think that has been really important. When you think of it, a lot gets introduced to your body through your mouth, so we will continue to stay on top of this.
It's getting to the time in the process when we start to confirm that the graft has taken hold, that there is no rejection and that there is no significant graft vs. host disease happening. Rita has done all that she can to help the outcome be positive so now, it's in God's hands. We trust that, with all of your prayers, she will be rewarded with a complete recovery and be curred of this disease. As you can see, you have all played an important role in getting us this far, so, keep up the prayers and positive thoughts until we cross the finish line.
Thanks Folks - Love, Dave & Rita
Saturday, March 5, 2011
Day 220 BMT 10
Good Morning,
Well, it turns out the slight bump in Rita's numbers was just a blip as they have gone back down for the last two days. Nothing to worry about - just the way it goes. Rita needed platelets and blood today as she is pretty much at the bottom. Again, all of this is normal for this process. The main thing is that Rita is still feeling good. As each day goes by now, its one day closer to having her new immune system kick in and one day closer to getting released from the hospital.
Yesterday, Rita's NP told her that she could eat popcorn and nuts. Boy, was she excited! I was immediately sent over to the hotel to retreive the box of popcorn. She ate one bag last night and I have a feeling that this might become a nightly ritual for a while.
So, as you can see, all is well out here. We hope all is well with each of you and we will check in again soon.
Take Care, Dave & Rita
Well, it turns out the slight bump in Rita's numbers was just a blip as they have gone back down for the last two days. Nothing to worry about - just the way it goes. Rita needed platelets and blood today as she is pretty much at the bottom. Again, all of this is normal for this process. The main thing is that Rita is still feeling good. As each day goes by now, its one day closer to having her new immune system kick in and one day closer to getting released from the hospital.
Yesterday, Rita's NP told her that she could eat popcorn and nuts. Boy, was she excited! I was immediately sent over to the hotel to retreive the box of popcorn. She ate one bag last night and I have a feeling that this might become a nightly ritual for a while.
So, as you can see, all is well out here. We hope all is well with each of you and we will check in again soon.
Take Care, Dave & Rita
Thursday, March 3, 2011
Day 218 BMT 8
Good Evening,
Another good day. Rita's numbers actually came up a little today. We don't know if that is a blip or the beginning of a trend. We will know by getting her numbers over the nest few days.
She feels good. She walked one mile without stopping this evening - not without a few complaints. Actually, she was walking with her friend Warren and talking the whole time. Finally, she asked me "how many laps is this?" I told her it was 30 laps. She immediately got very tired and said I'm going in at 33!! I hope you can picture how funny she can be. She never misses an opportunity to let me knoiw how hard she is working and, how hard I am pushing her. Its all in good fun.
I fixed her a NY Strip steak, baked potato and peas for dinner tonight. I hope it will give her good energy tomorrow.
So, as you can see, things are going very well. Her doctor said today "you don't even look like you have had a transplant". It ture - she looks the best she has since we started this thing. Lets all keep up the prayers and get her to the finish line. I know its all of us together that is making this work. Thanks folks!!
Goodninght for now, Dave & Rtia
Another good day. Rita's numbers actually came up a little today. We don't know if that is a blip or the beginning of a trend. We will know by getting her numbers over the nest few days.
She feels good. She walked one mile without stopping this evening - not without a few complaints. Actually, she was walking with her friend Warren and talking the whole time. Finally, she asked me "how many laps is this?" I told her it was 30 laps. She immediately got very tired and said I'm going in at 33!! I hope you can picture how funny she can be. She never misses an opportunity to let me knoiw how hard she is working and, how hard I am pushing her. Its all in good fun.
I fixed her a NY Strip steak, baked potato and peas for dinner tonight. I hope it will give her good energy tomorrow.
So, as you can see, things are going very well. Her doctor said today "you don't even look like you have had a transplant". It ture - she looks the best she has since we started this thing. Lets all keep up the prayers and get her to the finish line. I know its all of us together that is making this work. Thanks folks!!
Goodninght for now, Dave & Rtia
Tuesday, March 1, 2011
Day 216 BMT 6
Good Evening,
Another uneventful day - which is great. Rita got her last dose of post transpplant MXT today and was pretty tired - according to her, she didn't sleep at all - just rested her eyes. Funny, she is the only one I know that snores while she is awake and just resting her eyes!! Maybe its just me but I think she is trying to hoodwink me.
Rita's numbers continue to go down and we look forward to the time when they start going back up. According to the doctors, that might be two to three weeks into the process so we will have to be patient. Rita has already walked one mile today and we will be going back out for another walk in a little while. She is not really looking forward to it but knows that its important to keep on course. Each step that she takes now will pay dividends later.
Its hard to believe that we are already at day +6 - the stem cell transplant seemed to be so far away in the beginning and now it is behind us. We have learned that the fear of the unknown is often exaggerated as to what reality is while at the same time, we don't take any of these blessings for granted.
Just a short note about Rita's affect on the staff out here - it is not unusual that when we are walking, one of the nurses will come up to us and say "Do you have any other questions?" I think all of you can appreciate how these nurses feel - Rita keeps them on their toes and they love addressing all of her questions. The very best ones get an Orio cookie - that has become the top prize here. So, as you can see, it is normal - Rita is the star of the show and it is awsome to watch.
I hope all of our future blogs can be as positive as this - I bet that they will!!
So, Goodnight for Now, Dave & Rita
Another uneventful day - which is great. Rita got her last dose of post transpplant MXT today and was pretty tired - according to her, she didn't sleep at all - just rested her eyes. Funny, she is the only one I know that snores while she is awake and just resting her eyes!! Maybe its just me but I think she is trying to hoodwink me.
Rita's numbers continue to go down and we look forward to the time when they start going back up. According to the doctors, that might be two to three weeks into the process so we will have to be patient. Rita has already walked one mile today and we will be going back out for another walk in a little while. She is not really looking forward to it but knows that its important to keep on course. Each step that she takes now will pay dividends later.
Its hard to believe that we are already at day +6 - the stem cell transplant seemed to be so far away in the beginning and now it is behind us. We have learned that the fear of the unknown is often exaggerated as to what reality is while at the same time, we don't take any of these blessings for granted.
Just a short note about Rita's affect on the staff out here - it is not unusual that when we are walking, one of the nurses will come up to us and say "Do you have any other questions?" I think all of you can appreciate how these nurses feel - Rita keeps them on their toes and they love addressing all of her questions. The very best ones get an Orio cookie - that has become the top prize here. So, as you can see, it is normal - Rita is the star of the show and it is awsome to watch.
I hope all of our future blogs can be as positive as this - I bet that they will!!
So, Goodnight for Now, Dave & Rita
Subscribe to:
Posts (Atom)