Sunday, June 12, 2011
Day 319 BMT 109
Hello everyone. This is Rita. I got released last Sunday with great results and now only have to go back to Buffalo every other week and the other week I can go to Faxton Hospital with Dr. Butala. I am feeling good. My family can't believe that I am allowed to drive, but Dave took me out for a test drive and I didn't miss a beat. Monday, I went to Price Chopper, loaded the groceries in the car and even brought them into the house and put them away. They were all amazed! I said I have alot of catching up to do. It's hard not to be able to touch flowers or dirt, so Dave did a few planters for me, and my sister Sue did the rest. I am allowed to water the plants, though. I can't clean, dust or put dirty laundry in but I can unload the dishwasher and put the clothes in the dryer and fold them. It is so hard for me to watch people do so much for me. My sister, Eva, faithfully came every 3 days to collect my mail and water my plants. I thank her. My sister Sherry has been my spiritual soul mate every step of the way. Thank you Sherry. I would like to thank my friends, people I didn't know, the many prayer groups that prayed for me, people that sent me many, many cards and my family, and especially my kids who have given me so much love, so much of their time and have sacrificed so much. For all they have done for me, I will be eternally grateful. The benefit was wonderful. I wish I could have been there. I would like to especially thank my wonderful husband, Dave. He spent most of the time by my side, even sleeping in the recliner next to me in the hospital. He pushed me all the way, and I know I wouldn't have done all the walking and eating if he wasn't there. Thanks again to you all. I love you all, Rita
Saturday, June 4, 2011
Day 311 BMT 101
Hello,
Well, we are still out here in Buffalo. So far, the results of the bone marrow biopsy are all good. While there has been an increase in the percentage of blasts, they are still within normal range. The reason we are still here is that Friday morning, day 100, Rita woke up with a slight fever. Due to that, the doctor would not release us to go home. Rita did not need to be admitted so we are back at the hotel. We have an appointment tomorrow morning (Sunday) and hope that they will let us check out of the hotel and come home tomorrow. We'll just have to wait and see. Rita is feeling pretty good and her temperature has returned to normal. They have taken more blood samples and testing to see if thay can determine the cause of the fever. We may or may not know the results tomorrow but still hope to come home as long as her fever dosen't come back.
I know this is short but there really isn't much else to say. This is just how it goes with this process. Its the old "one day at a time" thing. We are doing good and are optimistic that we will be home tomorrow.
Take care, Dave & Rits
Well, we are still out here in Buffalo. So far, the results of the bone marrow biopsy are all good. While there has been an increase in the percentage of blasts, they are still within normal range. The reason we are still here is that Friday morning, day 100, Rita woke up with a slight fever. Due to that, the doctor would not release us to go home. Rita did not need to be admitted so we are back at the hotel. We have an appointment tomorrow morning (Sunday) and hope that they will let us check out of the hotel and come home tomorrow. We'll just have to wait and see. Rita is feeling pretty good and her temperature has returned to normal. They have taken more blood samples and testing to see if thay can determine the cause of the fever. We may or may not know the results tomorrow but still hope to come home as long as her fever dosen't come back.
I know this is short but there really isn't much else to say. This is just how it goes with this process. Its the old "one day at a time" thing. We are doing good and are optimistic that we will be home tomorrow.
Take care, Dave & Rits
Tuesday, May 31, 2011
Day 307 BMT 97
Good Evening,
Here is the latest. Since we last posted, we have experienced some downs and ups. First, Rita's numbers sort of crashed for a few days. During this time, the doctors told us not to worry but, as I'm sure you can understand, we were more than a little concerned. When we got to the clinic visit on Friday 5/20/11, Rita was neutropenic and it was questionable as to whether or not we would be able to come home for the Memorial Day weekend. We were sort of bummed out at this time. Our next clinic visit was Wednesday 5/25/11 and we knew that if the numbers didn't improve, they would probably tell us we couldn't go home. After Rita had her blood taken and we were waiting for the results, Rita decided that we should reherse our lines so that we could convince the doctors to let us go home. So, we spent at least a half an hour going over what I would say if the doctor said so and so and what Rita would say if they said something else. We acutally had a pretty good script all ready to deliver. Well, the NP came in and brought Rita's numbers up on the computer. Much to our amazement, the nmbers had improved to a point that we had not seen for over a month. All of our rehersal time was for nothing - to make a long story short, they told us to go home and that they would see us next Tuesday.
So we packed up and went home for the holiday weekend. It was a great time. Selpt in our own bed, had quality time with family and friends and then drove back out to Buffalo yesterday. Today started early with a 6:30 AM visit to phlebotomy and then an intrethecal lumbar chemo infusion and then a bone marrow biopsy. Rita tolerated all of this like the champion she is. Her blood chemistry is excellent and her WBC and ANC is also excellent. We will now wait until we get the results from the bone marrow biopsy to see if we can come home for good on Friday. I'll be sure to let you know how all of this goes. Rita has a couple of more tests tomorrow (bone density and PFT) and then, its pretty much a waiting game until we get the bone marrow biopsy results.
We hope you all had a great Memorial Day weekend - we sure did with being close to our family and friends.
Thanks to all for the continued prayers, Rita & Dave
P.S. Please excuse spelling and grammar - I didn't check this as usual.
Here is the latest. Since we last posted, we have experienced some downs and ups. First, Rita's numbers sort of crashed for a few days. During this time, the doctors told us not to worry but, as I'm sure you can understand, we were more than a little concerned. When we got to the clinic visit on Friday 5/20/11, Rita was neutropenic and it was questionable as to whether or not we would be able to come home for the Memorial Day weekend. We were sort of bummed out at this time. Our next clinic visit was Wednesday 5/25/11 and we knew that if the numbers didn't improve, they would probably tell us we couldn't go home. After Rita had her blood taken and we were waiting for the results, Rita decided that we should reherse our lines so that we could convince the doctors to let us go home. So, we spent at least a half an hour going over what I would say if the doctor said so and so and what Rita would say if they said something else. We acutally had a pretty good script all ready to deliver. Well, the NP came in and brought Rita's numbers up on the computer. Much to our amazement, the nmbers had improved to a point that we had not seen for over a month. All of our rehersal time was for nothing - to make a long story short, they told us to go home and that they would see us next Tuesday.
So we packed up and went home for the holiday weekend. It was a great time. Selpt in our own bed, had quality time with family and friends and then drove back out to Buffalo yesterday. Today started early with a 6:30 AM visit to phlebotomy and then an intrethecal lumbar chemo infusion and then a bone marrow biopsy. Rita tolerated all of this like the champion she is. Her blood chemistry is excellent and her WBC and ANC is also excellent. We will now wait until we get the results from the bone marrow biopsy to see if we can come home for good on Friday. I'll be sure to let you know how all of this goes. Rita has a couple of more tests tomorrow (bone density and PFT) and then, its pretty much a waiting game until we get the bone marrow biopsy results.
We hope you all had a great Memorial Day weekend - we sure did with being close to our family and friends.
Thanks to all for the continued prayers, Rita & Dave
P.S. Please excuse spelling and grammar - I didn't check this as usual.
Tuesday, May 17, 2011
Day 293 (BMT 83)
Hello Everyone!
I'm back out with Mom this week until tomorrow. We have been pretty low key this week so far due to the miserable weather. At least Mom doesn't feel like she's missing much. Who wants to be in the cold drizzle anyway? She's been fervently working on her thank you notes. I can't believe her dedication. She is really something else.
We had another clinic appointment today and Mom had another great report. Her numbers are technically down a little but the Doctors all assure us this is a normal part of the routine and that they will likely ebb and flow for a while.
Mom is still on track to be coming home June 3rd. I can't even put into words how amazing it is to write that. We all can't wait to have her right where she belongs. It was a beautiful summer last year, but no matter what the weather, this will be the best one ever.
Love,
Amy
I'm back out with Mom this week until tomorrow. We have been pretty low key this week so far due to the miserable weather. At least Mom doesn't feel like she's missing much. Who wants to be in the cold drizzle anyway? She's been fervently working on her thank you notes. I can't believe her dedication. She is really something else.
We had another clinic appointment today and Mom had another great report. Her numbers are technically down a little but the Doctors all assure us this is a normal part of the routine and that they will likely ebb and flow for a while.
Mom is still on track to be coming home June 3rd. I can't even put into words how amazing it is to write that. We all can't wait to have her right where she belongs. It was a beautiful summer last year, but no matter what the weather, this will be the best one ever.
Love,
Amy
Wednesday, May 11, 2011
Day 287 BMT 77
Hello Folks,
Its hard to believe another week has gone by since our last communication. The time is really flying by and the days are full of good things. Rita is doing great!! I spend most of my day working which feels great as it is a sign of things getting back to normal. We had another good visit to the clinic this morning and all of Rita's numbers continue to be right where the BMT team wants them to be. Another victory today for Rita - she was taken off of her potASSium today!! No more mixing the elixir from hell with yogurt and giving it to her while trying not to look at her face!! I could always feel the eyes letting me know how mean I was by making her take this evil concoction!! I don't know who is more relieved - her or me.
So, as you can see, we continue to take baby steps back to a healthy Rtia and a normal life. We even have been able to take a few walks outside in the evening as the weather is starting to get better. Rita still has to be careful while out in public as she is still on immunosupressants and probably will be until the end of August. These are the little adjustments we will need to make and, with time, those to will pass.
We are getting closer to the time when Rita can come home and, to me, I feel like a little kid that is full of anticipation at Christmas time. It is going to be so good to see her with all of her family and friends close by and to see her be able to reconnect. I know that many of you will also appreciate having her back in your lives - its going to be a great summer!!
Goodnight and take care, Rita & Dave
Its hard to believe another week has gone by since our last communication. The time is really flying by and the days are full of good things. Rita is doing great!! I spend most of my day working which feels great as it is a sign of things getting back to normal. We had another good visit to the clinic this morning and all of Rita's numbers continue to be right where the BMT team wants them to be. Another victory today for Rita - she was taken off of her potASSium today!! No more mixing the elixir from hell with yogurt and giving it to her while trying not to look at her face!! I could always feel the eyes letting me know how mean I was by making her take this evil concoction!! I don't know who is more relieved - her or me.
So, as you can see, we continue to take baby steps back to a healthy Rtia and a normal life. We even have been able to take a few walks outside in the evening as the weather is starting to get better. Rita still has to be careful while out in public as she is still on immunosupressants and probably will be until the end of August. These are the little adjustments we will need to make and, with time, those to will pass.
We are getting closer to the time when Rita can come home and, to me, I feel like a little kid that is full of anticipation at Christmas time. It is going to be so good to see her with all of her family and friends close by and to see her be able to reconnect. I know that many of you will also appreciate having her back in your lives - its going to be a great summer!!
Goodnight and take care, Rita & Dave
Wednesday, May 4, 2011
Day 280 BMT 70
I can't be;ieve that it has been 10 days since our last post. I guess that is a good thing because we are in a place where the days fly by and Rita is doing great. I just got back to Buffalo after being home for a couple of days. I got some of my spring work done and, unfortunatly, the weather on Monday, Tuesday and Wednesday was not very good so, I could not get everything done that I had hoped to. It will just have to wait. Amy was here for the past few days (thanks Obie) and her and Rita had a great time. It is very good therapy for Rita (and I'm sure for the kids) when they can spend some time with their mom. I feel much better going home these days as Rita is such a champion and is doing so well. I don't feel like I'm leaving a sick person anymore and that really feels good.
With all of the progress that Rita has made, we can see the time when we will be home and back to a more normal routine. It will be awsome and we have all of you to thank for that. The science here is amazing but the power of your prayers is even more amazing - thank you so much.
Love, Rita & Dave
With all of the progress that Rita has made, we can see the time when we will be home and back to a more normal routine. It will be awsome and we have all of you to thank for that. The science here is amazing but the power of your prayers is even more amazing - thank you so much.
Love, Rita & Dave
Sunday, April 24, 2011
Happy Easter!! Day 270 BMT 60
We can't believe how far we have come and, on this special day, we want to make sure to give thanks. We are thankful for all of you and the blessing of seeing Rita get stronger and healthier day by day. There is no doubt in our minds that the power of prayer has played a key role in this.
Today is day 60 and it also marks another milestone for Rita - she will go off of one of her immunosuppressant drugs. Clinically, its a big step so we pray that she continues to do as well as she has through each of these events. For Rita, it means getting rid of six "honking big" pills each day which significantly improves her outlook on the day. As you know, pill taking is not one of her favorite things. So, step by step, Rita is getting closer to coming home and to a full and complete recovery. Please keep the prayers and positive thoughts coming so that we can all pull Rita through the finish line.
We hope that all of you have a happy and blessed Easter.
Love to all, Rita & Dave
Today is day 60 and it also marks another milestone for Rita - she will go off of one of her immunosuppressant drugs. Clinically, its a big step so we pray that she continues to do as well as she has through each of these events. For Rita, it means getting rid of six "honking big" pills each day which significantly improves her outlook on the day. As you know, pill taking is not one of her favorite things. So, step by step, Rita is getting closer to coming home and to a full and complete recovery. Please keep the prayers and positive thoughts coming so that we can all pull Rita through the finish line.
We hope that all of you have a happy and blessed Easter.
Love to all, Rita & Dave
Tuesday, April 19, 2011
Day 265 BMT 55
hi everyone! it's lisa.. i'm here in buffalo filling in for dad and spending some quality time with mom for a few days this week... it's so good to be here.. mom's doing amazing and I love being able to see first hand how far she's progressed since the stem cell transplant.
we've been doing a little shopping, a little restaurant exploring and a lot of catching up on the real housewives.. I haven't watched them since august when I was out here for the month, and I'm currently caught up on New York, New Jersey, Beverly Hills and Orange County.. oh and I'm back in the loop with Bethenny also.. while I don't always love the way these women act, mom gets a kick out of them, and at the end of every show we're thankful that we're not rich and famous.. or at least that's what we keep telling ourselves!
mom had an excellent clinic appointment today.. her numbers are exactly where they need to be and she was told today that she only has to come once a week now! she's super thrilled about that one.. more time for shopping, i think..
she reminded the nurse practitioner today that she's going home for memorial day, so she didn't accidently schedule any appointments for that long weekend.. the NP took it well.. and was happy to see mom's determination.
k, off to heat up a flax bag, and watch some quality tv.. wonder which housewives are on tonight!
thanks for reading, praying and sending positive energy our way. chat soon..
love.
we've been doing a little shopping, a little restaurant exploring and a lot of catching up on the real housewives.. I haven't watched them since august when I was out here for the month, and I'm currently caught up on New York, New Jersey, Beverly Hills and Orange County.. oh and I'm back in the loop with Bethenny also.. while I don't always love the way these women act, mom gets a kick out of them, and at the end of every show we're thankful that we're not rich and famous.. or at least that's what we keep telling ourselves!
mom had an excellent clinic appointment today.. her numbers are exactly where they need to be and she was told today that she only has to come once a week now! she's super thrilled about that one.. more time for shopping, i think..
she reminded the nurse practitioner today that she's going home for memorial day, so she didn't accidently schedule any appointments for that long weekend.. the NP took it well.. and was happy to see mom's determination.
k, off to heat up a flax bag, and watch some quality tv.. wonder which housewives are on tonight!
thanks for reading, praying and sending positive energy our way. chat soon..
love.
Thursday, April 14, 2011
Day 260 BMT 50
Rita and I want to thank everyone that participated in her benefit last Saturday. According to the information we have received, everybody had a great time and we are overwhelmed by all of your generosity, support and love. We wish we could have been there to enjoy your company and to personally thank each and every one of you.
Sherry and Wayne came out to visit us Tuesday and Wednesday and we had a great time. Now, we are back to our routine and will be back to the clinic tomorrow morning. Rita continues to do well and we hope that we get the same good reports tomorrow that we have been all along. Today is day 50 since the stem cell transplant - only 50 more days to go and we should be home. As the weather gets better, we will be able to get outside some and that will help to make the days a little better. We are really looking forward to being back home and we are starting to feel like it will be soon.
Lisa is coming out on Sunday to cover for me for a few days so that I can get home and spend a few days getting caught up at work and taking care of some household chores. I'm sure that Lisa and Rita will have a great time and that Lisa will give you an update while she is out here.
Once again, thank you so much for all that you do for us - the prayers, cards, support and, most of all, the love we feel from all of you. We are forever grateful.
God Bless, Rita & Dave
Sherry and Wayne came out to visit us Tuesday and Wednesday and we had a great time. Now, we are back to our routine and will be back to the clinic tomorrow morning. Rita continues to do well and we hope that we get the same good reports tomorrow that we have been all along. Today is day 50 since the stem cell transplant - only 50 more days to go and we should be home. As the weather gets better, we will be able to get outside some and that will help to make the days a little better. We are really looking forward to being back home and we are starting to feel like it will be soon.
Lisa is coming out on Sunday to cover for me for a few days so that I can get home and spend a few days getting caught up at work and taking care of some household chores. I'm sure that Lisa and Rita will have a great time and that Lisa will give you an update while she is out here.
Once again, thank you so much for all that you do for us - the prayers, cards, support and, most of all, the love we feel from all of you. We are forever grateful.
God Bless, Rita & Dave
Sunday, April 10, 2011
Lovely Rita Benefit 4.09.11
Wow.. what an amazing day yesterday was. We couldn't have hoped for a more beautiful day, to celebrate a more beautiful person. We saw people we haven't seen in years and though time has passed, we were able to pick up right where we left off. Matt, Amy and I tried to get around to each and everyone of you to personally thank you for supporting mom, but I am sure we missed many. The volumes of people and generosity is completely overwhelming and has left us feeling so thankful to have you all as friends. Thank you to all who volunteered, baked, created baskets, donated, and attended the benefit for Lovely Rita. It was a wonderful day, filled with love, friendship and support. We can never express how moved we are that you are all out there supporting, praying and encouraging Rita each and every day.
With much love and gratitude, the Briggs' family
Friday, April 8, 2011
Day 254 BMT 44
Great news!! We got the results today regarding the percentage of donor cells in Rita's bone marrow. The results revealed that 98.8% of the cells are of male orgin. Many of you may remember that Rita's donor is a male. That means that the stem cell transplant has take root and that Rita's immune system is being suported by the new donor cells. In other words, the transplant is working!! I can't begin to tell you how excited we are. This is what we have been praying for. So, here is Rita's status - less than 0.8% blasts - no evidence of leukemia and a new immune system that is being supported by donor cells. When we first met with Dr. Wetzler back on July 26, 2010, while we didn't totally understand all that was involved in the process, we did understand that a successful stem cell transplant was going to be key to a successful recovery for Rita. Here we are almost 8 months later and we have such positive news to share with all of you. We are not out of the woods yet but indications couldn't be more positive. We are celebrating this news and giving thanks for renewed hope.
I know that many of you will be participating in Rita's benefit tomorrow and I want to thank all of you, not just for tomorrow, but for all of the support you have given us all the way through this journey. Believe me, your presence has been felt every moment - especially through the tough times and now, I hope you can feel the joy that we feel as Rita continues to progress to a full recovery.
Thank you & God Bless, Dave & Rita.
I know that many of you will be participating in Rita's benefit tomorrow and I want to thank all of you, not just for tomorrow, but for all of the support you have given us all the way through this journey. Believe me, your presence has been felt every moment - especially through the tough times and now, I hope you can feel the joy that we feel as Rita continues to progress to a full recovery.
Thank you & God Bless, Dave & Rita.
Tuesday, April 5, 2011
Day 251 BMT 41
We are back from the clinic where we got an excellent report from Rita's bone marrow biopsy. While not all of the results are back, the parts that are indicate that Rita is still in remission and that there is no evidence of leukemia. Her blasts are at 0.8% (anything under 5% is good) and all of her other numbers continue to improve. While they don't have the results relative to how much of her bone marrow is from her donor, they feel positive about the indications that they do have. They said it might be another week before we get the rest of the results so, we'll let you know as soon as we do.
So, we are extreemly happy with the news we have received today and are thankful that all of the prayers continued to be answered. We still have a ways to go but we are getting there. Rita is feeling great, eating well and excercising daily. She is sleeping better and her energy level continues to improve. Step by step, she is getting closer to normal and staying focused on being home within 100 days. She hopes to beat that number too and be home for Memorial Day weekend, We'll see - I wouldn't bet against her.
So, that the good news for now - more to come when we get the rest of the biopsy results. Take care, Dave & Rtia.
So, we are extreemly happy with the news we have received today and are thankful that all of the prayers continued to be answered. We still have a ways to go but we are getting there. Rita is feeling great, eating well and excercising daily. She is sleeping better and her energy level continues to improve. Step by step, she is getting closer to normal and staying focused on being home within 100 days. She hopes to beat that number too and be home for Memorial Day weekend, We'll see - I wouldn't bet against her.
So, that the good news for now - more to come when we get the rest of the biopsy results. Take care, Dave & Rtia.
Friday, April 1, 2011
Day 247 BMT 37
Hello,
We did not get the results of the bone marrow biopsy today so I don't have any information regarding that to share with you. Our visit to the clinic this morning was uneventful which is a good thing. Rita continues to do well and the BMT team changed her clinic visits to twice a week so we will now go on Tuesdays and Fridays. That means that we probably won't have the results of her biopsy until next Tuesday. If we do get any information before then, I'll be sure to update on the results. In the mean time, we are happy to have the time between visits to clinic lengthened and we take that a a good sign.
So, for now, there is not much new to report. We look forward to a weekend with appropriate amounts of exercise and rest. We hope that you all enjoy your weekend and we'll check back in when we have more information.
Take care, Dave
We did not get the results of the bone marrow biopsy today so I don't have any information regarding that to share with you. Our visit to the clinic this morning was uneventful which is a good thing. Rita continues to do well and the BMT team changed her clinic visits to twice a week so we will now go on Tuesdays and Fridays. That means that we probably won't have the results of her biopsy until next Tuesday. If we do get any information before then, I'll be sure to update on the results. In the mean time, we are happy to have the time between visits to clinic lengthened and we take that a a good sign.
So, for now, there is not much new to report. We look forward to a weekend with appropriate amounts of exercise and rest. We hope that you all enjoy your weekend and we'll check back in when we have more information.
Take care, Dave
Wednesday, March 30, 2011
Day 245 BMT 35
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
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
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
Monday, February 28, 2011
Day 215 BMT 5
Good evening,
Sorry about the two false posts - this computer is really sensitive. I'm sure its not me!!
Today went well. Rita's numbers are getting really low so she doesn't have the energy that she has had before. Eventhough, she still did 43 laps today which is remarkable considering where she is in the process. It was a little hard for her but, she did even more than I expected. The next couple of weeks are going to be the hardest. Rita basically has no immune system left and we will need to trust that her new doner cells will start to produce an new immune system soon. That is basically what will determine the success of this entire process - a process that started back in July 2010. The next two or three weeks are very important to the overall outcome and we are both aware of the fact that we are now in critical territory. As each day goes by and we have another positive result, we are even more encouraged that the overall outcome is going to be positive.
Tonight, Rita enjoyed some of Sherry's meatballs and spaghetti, we walked 23 laps and she is now taking a well deserved rest. Honestly, she is working so hard to make sure that she gets out of the hospital in 30 days. That is her goal and, knowing her, she will accomplish that.
So, things are really OK out here - we continue to take things one day at a time and to make sure we give thanks for all of the positive things that we have experienced throughout the journey we are on. There have been many times when we realize how much we are blessed to have all of you praying and supporting us. Please keep it up because it is working.
God Bless and Goodnight, Dave & Rita.
Sorry about the two false posts - this computer is really sensitive. I'm sure its not me!!
Today went well. Rita's numbers are getting really low so she doesn't have the energy that she has had before. Eventhough, she still did 43 laps today which is remarkable considering where she is in the process. It was a little hard for her but, she did even more than I expected. The next couple of weeks are going to be the hardest. Rita basically has no immune system left and we will need to trust that her new doner cells will start to produce an new immune system soon. That is basically what will determine the success of this entire process - a process that started back in July 2010. The next two or three weeks are very important to the overall outcome and we are both aware of the fact that we are now in critical territory. As each day goes by and we have another positive result, we are even more encouraged that the overall outcome is going to be positive.
Tonight, Rita enjoyed some of Sherry's meatballs and spaghetti, we walked 23 laps and she is now taking a well deserved rest. Honestly, she is working so hard to make sure that she gets out of the hospital in 30 days. That is her goal and, knowing her, she will accomplish that.
So, things are really OK out here - we continue to take things one day at a time and to make sure we give thanks for all of the positive things that we have experienced throughout the journey we are on. There have been many times when we realize how much we are blessed to have all of you praying and supporting us. Please keep it up because it is working.
God Bless and Goodnight, Dave & Rita.
Sunday, February 27, 2011
Day 214 BMT 4
Good Morning,
Rita had a pretty good day yesterday and slept pretty good last night - while the normal interruptions were there. Looking forward to an easy Sunday with some excercise and resting. As I said before, its a good thing that there is not much to report as that means things are going according to plan.
So, we hope you all have a good day and we'll check in later, Dave & Rita
Rita had a pretty good day yesterday and slept pretty good last night - while the normal interruptions were there. Looking forward to an easy Sunday with some excercise and resting. As I said before, its a good thing that there is not much to report as that means things are going according to plan.
So, we hope you all have a good day and we'll check in later, Dave & Rita
Friday, February 25, 2011
Day 212 BMT 2
Hello,
Today was a very good day - Rita felt better than yesterday. Her appetite seemed to be better and her energy level was up a bit. We did a total of 60 laps today which is very good. There is not much new to report and I think that is a good thing. What we want is to have a gradual transition to her new cells without very much drama in the process. So, if I can keep posting that there is not much to report, that will be a good thing.
Rita's sense of humor is still in tact - she continues to keep the staff here in a light mood and they all want her as their patient (oh suprise). Even though this is a tremendous challenge, she still is concerned with how the people around her are doing. She thinks about how long they have to drive into work, how the roads are and who is taking care of their kids. Does any of this sound familar?
So, as you can see, it really feels somewhat normal - just in a different place. As the song goes - "She lifts me up" - without even trying. Aren't I supposed to be doing that for her? Oh well, some things will never change - I hope!!
So, enough rambling and Goodnight for now - Love, Dave & Rita
Today was a very good day - Rita felt better than yesterday. Her appetite seemed to be better and her energy level was up a bit. We did a total of 60 laps today which is very good. There is not much new to report and I think that is a good thing. What we want is to have a gradual transition to her new cells without very much drama in the process. So, if I can keep posting that there is not much to report, that will be a good thing.
Rita's sense of humor is still in tact - she continues to keep the staff here in a light mood and they all want her as their patient (oh suprise). Even though this is a tremendous challenge, she still is concerned with how the people around her are doing. She thinks about how long they have to drive into work, how the roads are and who is taking care of their kids. Does any of this sound familar?
So, as you can see, it really feels somewhat normal - just in a different place. As the song goes - "She lifts me up" - without even trying. Aren't I supposed to be doing that for her? Oh well, some things will never change - I hope!!
So, enough rambling and Goodnight for now - Love, Dave & Rita
Thursday, February 24, 2011
Day 211 - BMT 1
I bet you were hoping that I would have more to say - I hit the wrong key. Sorry!
As you can see by the BMT 1, we are now in positive territory. After all of the prepartion, we are finally in the home stretch. Our eyes are wide open and we know that there are potential bumps ahead of us but, we feel that Rita has demonstrated that she can and will handle them. I promise that I will do everything I can do to help her through the tough times and encourage her until she can once again gain control of her life. I can't wait until the day she jumps in the car and waves goodbye as she and Sherry head out on one of their shopping trips. It won't be long now.
Rita is feeling a little tired today which is to be expected. We are now entering the phase where her counts will go way down and her body will begin the battle with the new stem cells. As it has been explained to us, her new cells will recognize her body as foriegn and her body will recognize the new stem cells as foriegn so there will be a struggle to destroy each other. They have medicine to control this and will manage it so that there is a gradule "transfer of power" so to speak from her old system to her new system. That will be the main focus of the next few week and possibly months. Each person responds differently to this so we will have to wait, watch and see how Rita does. I am confident she will continue to be a superstar!!
We have walked over one mile today (35 laps) and are going back out for a walk in a little while (Rita wants to be sure to be back in time for Idol)so, as you can see - eventhough Rita is not feeling the best, she is still determined to give it her all. I am so proud and impressed with her dertermination. I know that this is what winners are made of - and Rita will win this battle.
So, Goodnight for now - God Bless, Dave & Rita
As you can see by the BMT 1, we are now in positive territory. After all of the prepartion, we are finally in the home stretch. Our eyes are wide open and we know that there are potential bumps ahead of us but, we feel that Rita has demonstrated that she can and will handle them. I promise that I will do everything I can do to help her through the tough times and encourage her until she can once again gain control of her life. I can't wait until the day she jumps in the car and waves goodbye as she and Sherry head out on one of their shopping trips. It won't be long now.
Rita is feeling a little tired today which is to be expected. We are now entering the phase where her counts will go way down and her body will begin the battle with the new stem cells. As it has been explained to us, her new cells will recognize her body as foriegn and her body will recognize the new stem cells as foriegn so there will be a struggle to destroy each other. They have medicine to control this and will manage it so that there is a gradule "transfer of power" so to speak from her old system to her new system. That will be the main focus of the next few week and possibly months. Each person responds differently to this so we will have to wait, watch and see how Rita does. I am confident she will continue to be a superstar!!
We have walked over one mile today (35 laps) and are going back out for a walk in a little while (Rita wants to be sure to be back in time for Idol)so, as you can see - eventhough Rita is not feeling the best, she is still determined to give it her all. I am so proud and impressed with her dertermination. I know that this is what winners are made of - and Rita will win this battle.
So, Goodnight for now - God Bless, Dave & Rita
Wednesday, February 23, 2011
Day 210 BMT 0
So the stem cell transplant is officially done.. mom's been unhooked from all the infusion stuff, and is now just on saline like normal! She didn't feel a thing, in fact, she was a bit disappointed (dad said) because she missed the whole thing! She was talking to the nurse, and before she knew it, it was over! She couldn't believe she missed her "tomato soup" infusion... guess it looked just like tomato soup. I guess thats better than it looking like slimer green ectoplasm or something weird! She also commented that she had a grilled cheese for lunch, so she figures it went perfect!
For the rest of the night mom's going to finish her dinner, snuggle into her polka dot fleece blanket and watch Idol.. she's looking forward to that.
We can't believe this day is here... and done.. it seems like yesterday we found out mom was sick, and then what it was going to take to get her better... now, 210 days later, she's made it through another giant hurdle on the road to recovery. we all know there will be bumps and maybe some pot holes.. but she's got a positive, relaxed attitude and she is ready to face the rest of this head on. Tomorrow we get to start counting up.. we have hope that by day 104 we'll be packing up the hotel room and heading home so we all, especially mom, can get back to living her life!
thank you again for the positive energy, the prayers and the love. we appreciate it more than you can ever know...
love.
For the rest of the night mom's going to finish her dinner, snuggle into her polka dot fleece blanket and watch Idol.. she's looking forward to that.
We can't believe this day is here... and done.. it seems like yesterday we found out mom was sick, and then what it was going to take to get her better... now, 210 days later, she's made it through another giant hurdle on the road to recovery. we all know there will be bumps and maybe some pot holes.. but she's got a positive, relaxed attitude and she is ready to face the rest of this head on. Tomorrow we get to start counting up.. we have hope that by day 104 we'll be packing up the hotel room and heading home so we all, especially mom, can get back to living her life!
thank you again for the positive energy, the prayers and the love. we appreciate it more than you can ever know...
love.
4:31 All done... whew.
Stem cells all done. Now mom will be monitored for 1 hour then she's free to move around. so far so good, dad said! We'll keep you posted. thanks for the prayers!
4:24 Almost done!
The stem cells are almost all in already.. it's going really fast! No problems and according to dad, mom's talking to her nurse about cooking, skiing, kids and everything else.. wonder how many questions that nurse is going to answer today!! Keep it going, mom!
BMT -1/BMT 0
Hi everyone. there has been a change in plans.. Today was supposed to be mom's day of rest, which she reminded dad of while he was taking her on her 22nd lap this morning.. guess she thought she could get out of exercising today.. .. well, after lunch mom and dad were informed that the stem cells arrived early, and that mom was possibly going to have the transplant today. She has been cleared by her doctors, and as of 4:10 pm, the transplant started. Dad promised to update me throughout the process, so I will do the same.
Let's get those prayers going.. good luck mom!!!!! We're all sending you strength and love.
Let's get those prayers going.. good luck mom!!!!! We're all sending you strength and love.
Tuesday, February 22, 2011
Day 209 - BMT -2
CHEMO IS FINISHED!!
Rita had her last two chemo treatments today and did excellent. No nausea or anything. Her appetite is still good and her energy level is remarkable. Today, she walked 66 laps for two miles. In addition, she lifted her three pound weights, did the stair stepper and worked with her putty to help her hand strength. She is determined to get through this with minimal complications so that she can get back to the hotel and then home as soon as possible. Rita'a attitude is super. She is joking with all of the staff and even sharing some of the funny things that have happened to her during her life. Its fun to watch! She is like her old self.
Tomorrow is her day of rest but we still plan on keeping up with the exercise (the two mile goal) and getting as much nourishment as possible. It is very encouraging to see how well her attitude is. I think she is so much better now that she is actually into the process and no longer worring about what it will be like. I feel that she is convinced that she can handle anything that comes her way. I know that she can and will.
So, goodnight for now. I think that tonight we will both sleep easy - confident that we are truly on our way to recovery and a complete cure.
God Bless, Dave & Rita
Rita had her last two chemo treatments today and did excellent. No nausea or anything. Her appetite is still good and her energy level is remarkable. Today, she walked 66 laps for two miles. In addition, she lifted her three pound weights, did the stair stepper and worked with her putty to help her hand strength. She is determined to get through this with minimal complications so that she can get back to the hotel and then home as soon as possible. Rita'a attitude is super. She is joking with all of the staff and even sharing some of the funny things that have happened to her during her life. Its fun to watch! She is like her old self.
Tomorrow is her day of rest but we still plan on keeping up with the exercise (the two mile goal) and getting as much nourishment as possible. It is very encouraging to see how well her attitude is. I think she is so much better now that she is actually into the process and no longer worring about what it will be like. I feel that she is convinced that she can handle anything that comes her way. I know that she can and will.
So, goodnight for now. I think that tonight we will both sleep easy - confident that we are truly on our way to recovery and a complete cure.
God Bless, Dave & Rita
Monday, February 21, 2011
Day 208 - BMT -3
Hello,
Rita did great today!! She handled her new chemo (the really hard one) with no problem what-so-ever. She even increased her trips around the nursing station to 52 laps. We know that, soon, things will start to decline but, at least she is coming from a position of strength. That should help her on the other side.
Tomorrow will be her last two doses of chemo. She is really looking forward to having that behind her. We are not kidding ourselves - we know that there are challenges ahead. I guess my point is that, so far, Rita has meet each challenge and I fully expect that she will continue to do so as we continue on through this process.
So, we will try to get some sleep tonight and not think too much about tomorrow. That seems to be the best way to get through this. We hope you all are doing good and look forward to getting together when this process has come to a successful conclusion.
Take Care and Stay Well, Love, Dave & Rita
Rita did great today!! She handled her new chemo (the really hard one) with no problem what-so-ever. She even increased her trips around the nursing station to 52 laps. We know that, soon, things will start to decline but, at least she is coming from a position of strength. That should help her on the other side.
Tomorrow will be her last two doses of chemo. She is really looking forward to having that behind her. We are not kidding ourselves - we know that there are challenges ahead. I guess my point is that, so far, Rita has meet each challenge and I fully expect that she will continue to do so as we continue on through this process.
So, we will try to get some sleep tonight and not think too much about tomorrow. That seems to be the best way to get through this. We hope you all are doing good and look forward to getting together when this process has come to a successful conclusion.
Take Care and Stay Well, Love, Dave & Rita
Sunday, February 20, 2011
Day 207 - BMT -4
Good Evening,
Just a short note. Today was another pretty good day with no complications. Tomorrow Rita will get an additional chemo drug which will be harder than what she has had so far. Hopefully, she will tolerate that OK also. Just two more days of chemo before the transplant - then, its all about the recovery. Everyone keep your fingers crossed.
Goodnight, Dave & Rita
Just a short note. Today was another pretty good day with no complications. Tomorrow Rita will get an additional chemo drug which will be harder than what she has had so far. Hopefully, she will tolerate that OK also. Just two more days of chemo before the transplant - then, its all about the recovery. Everyone keep your fingers crossed.
Goodnight, Dave & Rita
Saturday, February 19, 2011
Day 206 - BMT -5
Hello,
Another good day today for Rita. She slept pretty good last night even with all of the interruptions. They come into the room at least once every two hours all through the night so sleep comes at a premium. Rita tolerated her second dose of chemo well and has kept on schedule with her excersizing. I know that it is early in the process but we still feel good with each of her accomplishments. It makes her feel good and like she is doing everything she can to get better. Food is still tasting pretty good to her so she is trying to take advantage of that and eat all that she can. We konow that there will be days coming when she won't feel as good and hope all the gains we can make now will help to sustain her through the hard times.
So, for now, everything is going according to plan and we remain optimistic and in good spirits. Thanks again for all of you thoughts and prayers.
Take Care, Dave & Rita.
Another good day today for Rita. She slept pretty good last night even with all of the interruptions. They come into the room at least once every two hours all through the night so sleep comes at a premium. Rita tolerated her second dose of chemo well and has kept on schedule with her excersizing. I know that it is early in the process but we still feel good with each of her accomplishments. It makes her feel good and like she is doing everything she can to get better. Food is still tasting pretty good to her so she is trying to take advantage of that and eat all that she can. We konow that there will be days coming when she won't feel as good and hope all the gains we can make now will help to sustain her through the hard times.
So, for now, everything is going according to plan and we remain optimistic and in good spirits. Thanks again for all of you thoughts and prayers.
Take Care, Dave & Rita.
Friday, February 18, 2011
Day 205 - BMT Day -6
Good Evening,
Well, the day started out a little rough. Rita rushed to get ready, take her pills and down a cup of coffee so that we could be here to register for admitting by 6:30 AM. Well, between all of that and the nerves that were there, she got sick to her stomach and lost everything that she had put in. Luckily, she had her newspaper with her and that served as an adequate catch basin - almost, so the clean up wasn't too bad. Once we got to the floor (5 East) and she got settled into her new bed, she began to feel better. The rest of the day went fine. Rita tolerated her chemo very well and has already walked over a mile and worked out for 5 minutes on a sitting stair stepper. They have really emphasized how important excersize will be for her so we want to get right on it and not fall behind. Her appetite is good so far so everything looks good. Hopefully, tomorrow will be a repeat of today without the cookie tossing.
That's it for now - Take Care, Dave & Rtia.
Well, the day started out a little rough. Rita rushed to get ready, take her pills and down a cup of coffee so that we could be here to register for admitting by 6:30 AM. Well, between all of that and the nerves that were there, she got sick to her stomach and lost everything that she had put in. Luckily, she had her newspaper with her and that served as an adequate catch basin - almost, so the clean up wasn't too bad. Once we got to the floor (5 East) and she got settled into her new bed, she began to feel better. The rest of the day went fine. Rita tolerated her chemo very well and has already walked over a mile and worked out for 5 minutes on a sitting stair stepper. They have really emphasized how important excersize will be for her so we want to get right on it and not fall behind. Her appetite is good so far so everything looks good. Hopefully, tomorrow will be a repeat of today without the cookie tossing.
That's it for now - Take Care, Dave & Rtia.
Thursday, February 17, 2011
Day 204
Good Evening,
All went well today. Rita had her new line placed and tolerated the procedure very well. Then, after a physical exam, a B12 shot and a review of what the process will be leading up to and including transplant day, we were able to come back to the hotel. I was able to get some work done and Rita took a well deserved nap. We went out to dinner and had a nice meal at a casual restaurant. Now, we are relaxing, getting ready to watch Idol and will turn in early as we need to be to the hospital by 6:30 AM tomorrow.
Rita is ready for this. Even though there is always the fear of the unknown, there is also the desire to get this behind her so that she can return to a more normal life. When I look at what she has already been through and the number of days that have passed since we started this, I feel that this part of the process will also go very well and that Rita will continue to do outstanding - as Dr. Wetzler would say. Rita likes her new team of caregivers and that helps alot.
So, all in all, things seem to be pretty good.
Well, here we go!! Love, Dave & Rita.
All went well today. Rita had her new line placed and tolerated the procedure very well. Then, after a physical exam, a B12 shot and a review of what the process will be leading up to and including transplant day, we were able to come back to the hotel. I was able to get some work done and Rita took a well deserved nap. We went out to dinner and had a nice meal at a casual restaurant. Now, we are relaxing, getting ready to watch Idol and will turn in early as we need to be to the hospital by 6:30 AM tomorrow.
Rita is ready for this. Even though there is always the fear of the unknown, there is also the desire to get this behind her so that she can return to a more normal life. When I look at what she has already been through and the number of days that have passed since we started this, I feel that this part of the process will also go very well and that Rita will continue to do outstanding - as Dr. Wetzler would say. Rita likes her new team of caregivers and that helps alot.
So, all in all, things seem to be pretty good.
Well, here we go!! Love, Dave & Rita.
Wednesday, February 16, 2011
Day 203 - Back in Buffalo
Hello,
Well, we are back here in Buffalo and settled into our hotel room. Rita is feeling good and is ready to start the transplant process. We are having a relaxing evening watching Idol and preparing ourselves for the next part of the journey ahead of us. We will be over to the clinic early tomorrow morning and Rita will have blood taken, her central line placed and then a complete physical. After that is finished, we will be back to the hotel for one more night before Rita is admitted to start the chemo and the transplant. I will try to give daily updates so that you all can share in her progress and complete recovery. We both know how vested you all have become in Rita's journey and are deeply appreciative of your support and prayers.
This is a little brief but there is really not much to report yet, so, have a good evening and we'll check in later.
Take Care, Dave
Well, we are back here in Buffalo and settled into our hotel room. Rita is feeling good and is ready to start the transplant process. We are having a relaxing evening watching Idol and preparing ourselves for the next part of the journey ahead of us. We will be over to the clinic early tomorrow morning and Rita will have blood taken, her central line placed and then a complete physical. After that is finished, we will be back to the hotel for one more night before Rita is admitted to start the chemo and the transplant. I will try to give daily updates so that you all can share in her progress and complete recovery. We both know how vested you all have become in Rita's journey and are deeply appreciative of your support and prayers.
This is a little brief but there is really not much to report yet, so, have a good evening and we'll check in later.
Take Care, Dave
Monday, February 14, 2011
Day 201
Good Evening,
OK - here is the long awaited update. Sorry we haven't posted but there really hasen't been any news as Rita has been home just trying to get stronger and get ready for the stem cell transplant. Today we went to Buffalo to get the results of Rita's most recent bone marrow biopsy and the official "go" for stem cell transplant. As I am sure you can imagine, we were pretty anxious about the news we would get today. So here it is - first a Resident came in and gave us Rtia's numbers and they were all very good. He then gave us the results of her bone marrow biopsy and that was - no evidence of leukemia - the exact words we wanted to hear. So, then Dr. Wetzler came in and basically said "You have done well and now I turn you over to the transplant team - I'll see you in about a year. That is exactly what we wanted to hear.
So now, we will go back to Buffalo on Wednesday and start the stem cell process on Thursday. The acutal transplant date is 2/24/2011. After that, we will be in new territority and it will all depend on how Rita responds to the transplant. I could give you estimates of how long this next phase will take but, it is really an individual thing. We will just have to stay flexible and patient while keeping our focus on the ultimate outcome. As long as the outcome is that Rita is curred, it really dosen't matter how long it takes.
I will keep the updates more frequent now that we are entering a new phase. Please keep the prayers coming - you can't believe how much that has meant to Rita.
Take care and we Love You, Dave & Rita.
OK - here is the long awaited update. Sorry we haven't posted but there really hasen't been any news as Rita has been home just trying to get stronger and get ready for the stem cell transplant. Today we went to Buffalo to get the results of Rita's most recent bone marrow biopsy and the official "go" for stem cell transplant. As I am sure you can imagine, we were pretty anxious about the news we would get today. So here it is - first a Resident came in and gave us Rtia's numbers and they were all very good. He then gave us the results of her bone marrow biopsy and that was - no evidence of leukemia - the exact words we wanted to hear. So, then Dr. Wetzler came in and basically said "You have done well and now I turn you over to the transplant team - I'll see you in about a year. That is exactly what we wanted to hear.
So now, we will go back to Buffalo on Wednesday and start the stem cell process on Thursday. The acutal transplant date is 2/24/2011. After that, we will be in new territority and it will all depend on how Rita responds to the transplant. I could give you estimates of how long this next phase will take but, it is really an individual thing. We will just have to stay flexible and patient while keeping our focus on the ultimate outcome. As long as the outcome is that Rita is curred, it really dosen't matter how long it takes.
I will keep the updates more frequent now that we are entering a new phase. Please keep the prayers coming - you can't believe how much that has meant to Rita.
Take care and we Love You, Dave & Rita.
Friday, February 4, 2011
Day 191 Home Sweet Home
hi everyone... so sorry it's been so long.. we've been busy trying to get mom ready for the next phase in this process. I'll try to catch you up to speed...
last thursday mom was discharged to the hotel and aside from a routine clinic appointment, she was able to rest until the scheduled bone marrow biopsy on monday. she was so relieved to be in the quiet space of her second home.. not as cozy as washington drive, but better than the hospital! Dad's cooking was needed also... we're trying to fatten her up still!
Monday she wasn't able to have the bone marrow biopsy because her neutrophils weren't exactly where they needed to be.. mom was pretty bummed at first because this means she has to go to buffalo this coming monday for the biopsy.. but dad realized this week was supposed to be for rest according to the protocol mom's on, so we're actually right on schedule!
Tuesday we had family meetings.. Matt, Amy and I went to buffalo and we all met with the transplant team so we will know what to expect through this process. some of the information was old, but some was new and we were able to ask questions... surprisingly mom didn't have too many at that very moment, but each person we met with let mom know they'd be available to answer any questions at anytime! She was happy to hear that...
aside from the family meeting, mom's day was filled with lots of appointments preping her for transplant. wednesday was more appointments and finally the green light to go home! she came home wednesday night and has been relaxing ever since! she is catching up on her bills, doing her taxes and trying to rest as much as possible.
Mom does have to go on monday (like i said already) for the bone marrow biopsy and then we think she'll be home until transplant. Right now she's scheduled to go back around the 2/16, with a transplant date of 2/23, that's all up in the air and we'll let you know more as soon as we know...
we will have to be very flexible as we proceed from here... they've already told us that initally she'll be admitted into the hospital for around 36 days (5 days pre transplant chemo, 1 day of rest then transplant with 30 days monitoring closely.) If all goes well, then mom will be able to stay at the hotel for the rest of the 104 days. I know this is the scariest and most critical time for mom.. so keep sending those prayers and good luck wishes!
we'll post again soon..
love.
last thursday mom was discharged to the hotel and aside from a routine clinic appointment, she was able to rest until the scheduled bone marrow biopsy on monday. she was so relieved to be in the quiet space of her second home.. not as cozy as washington drive, but better than the hospital! Dad's cooking was needed also... we're trying to fatten her up still!
Monday she wasn't able to have the bone marrow biopsy because her neutrophils weren't exactly where they needed to be.. mom was pretty bummed at first because this means she has to go to buffalo this coming monday for the biopsy.. but dad realized this week was supposed to be for rest according to the protocol mom's on, so we're actually right on schedule!
Tuesday we had family meetings.. Matt, Amy and I went to buffalo and we all met with the transplant team so we will know what to expect through this process. some of the information was old, but some was new and we were able to ask questions... surprisingly mom didn't have too many at that very moment, but each person we met with let mom know they'd be available to answer any questions at anytime! She was happy to hear that...
aside from the family meeting, mom's day was filled with lots of appointments preping her for transplant. wednesday was more appointments and finally the green light to go home! she came home wednesday night and has been relaxing ever since! she is catching up on her bills, doing her taxes and trying to rest as much as possible.
Mom does have to go on monday (like i said already) for the bone marrow biopsy and then we think she'll be home until transplant. Right now she's scheduled to go back around the 2/16, with a transplant date of 2/23, that's all up in the air and we'll let you know more as soon as we know...
we will have to be very flexible as we proceed from here... they've already told us that initally she'll be admitted into the hospital for around 36 days (5 days pre transplant chemo, 1 day of rest then transplant with 30 days monitoring closely.) If all goes well, then mom will be able to stay at the hotel for the rest of the 104 days. I know this is the scariest and most critical time for mom.. so keep sending those prayers and good luck wishes!
we'll post again soon..
love.
Thursday, January 27, 2011
Day 183
Hello,
Well, we are back at the hotel. Rita was discharged this afternoon - and not a day too soon either. She didn't hit all of her numbers but I think that the Doctors knew that there would be hell to pay if they didn't let her go. We are safe - it will just take a day or two longer to clear her system of the Mtx. She is taking pills for that and they will monitor her closely at the clinic.
So, we have finished all of the courses required prior to stem cell transplant. It's hard to believe that we have arrived at this time. It is both scary and at the same time a huge relief to have the chemo treatments behind us. Now, it will be all of the challenges that come with transplant. First the mega doses of chemo to get ready for the transplant and then waiting for the graff to take hold and praying that there is no significant amount of graft vs. host disease. We will be spending the next couple of weeks getting Rita's strength back up so that she can endure the transplant process.
We look forward to some good food and good sleep tonight. The hospital stay was exhausting for Rita so it is really good that we are back here where she can get some good food and some good rest.
Good evening for now - Take Care, Dave & Rita
Well, we are back at the hotel. Rita was discharged this afternoon - and not a day too soon either. She didn't hit all of her numbers but I think that the Doctors knew that there would be hell to pay if they didn't let her go. We are safe - it will just take a day or two longer to clear her system of the Mtx. She is taking pills for that and they will monitor her closely at the clinic.
So, we have finished all of the courses required prior to stem cell transplant. It's hard to believe that we have arrived at this time. It is both scary and at the same time a huge relief to have the chemo treatments behind us. Now, it will be all of the challenges that come with transplant. First the mega doses of chemo to get ready for the transplant and then waiting for the graff to take hold and praying that there is no significant amount of graft vs. host disease. We will be spending the next couple of weeks getting Rita's strength back up so that she can endure the transplant process.
We look forward to some good food and good sleep tonight. The hospital stay was exhausting for Rita so it is really good that we are back here where she can get some good food and some good rest.
Good evening for now - Take Care, Dave & Rita
Tuesday, January 25, 2011
Day 181
Hello,
Well, only one day late but, we have completed the last intrathecal MTX treatment of course 3 and hopefully, forever!! Things went pretty good today and Rita has handled everything like a storm trooper. She has even walked the hallway today - once for 7 laps and once for 9 laps!! While this was delayed due to all of the complications that we experienced last week, we feel really positive that we are back on track and are looking forward to being able to go back to the hotel on Thursday. It will be important for Rita to get back to an environment where she can eat good and sleep good. We haven't had much sleep for the past three days because they keep pumping fluids into Rita and then she has to go to the bathroom to get rid of them. She has had to go at least once every hour for the past three days. In addition to that, they keep coming into the room every few minutes to see if there is a spider or something in the corner, but we think its just to make sure we don't fall asleep!!
So, we are getting close to the end of course three. That means that stem cell transplant is the next step. It is hard to believe that we have come so far and that now, we are on the doorstep of the last critical step. Please keep Rita in your prayers as you have throughout this process. This is our best chance at a cure and we can use all of the help we can get. Hoefully, we will get home for a few days before we start the stem cell transplant. Rita will be trying to recover and gain strength which means that she may need to rest quite a bit so, please, be sure to call before coming over to see how she is feeling.
So, all in all, course 3 has been OK, if it wasn't for the blotched intrathecal last week that started all of the problems/complications. That really started a cascade of events and set Rita back quite a bit. We are hopeful that we won't run into any of these problems this week and that we can get through this with nominal outcomes.
Goodnight for now - Take Care, Dave & Rita.
Well, only one day late but, we have completed the last intrathecal MTX treatment of course 3 and hopefully, forever!! Things went pretty good today and Rita has handled everything like a storm trooper. She has even walked the hallway today - once for 7 laps and once for 9 laps!! While this was delayed due to all of the complications that we experienced last week, we feel really positive that we are back on track and are looking forward to being able to go back to the hotel on Thursday. It will be important for Rita to get back to an environment where she can eat good and sleep good. We haven't had much sleep for the past three days because they keep pumping fluids into Rita and then she has to go to the bathroom to get rid of them. She has had to go at least once every hour for the past three days. In addition to that, they keep coming into the room every few minutes to see if there is a spider or something in the corner, but we think its just to make sure we don't fall asleep!!
So, we are getting close to the end of course three. That means that stem cell transplant is the next step. It is hard to believe that we have come so far and that now, we are on the doorstep of the last critical step. Please keep Rita in your prayers as you have throughout this process. This is our best chance at a cure and we can use all of the help we can get. Hoefully, we will get home for a few days before we start the stem cell transplant. Rita will be trying to recover and gain strength which means that she may need to rest quite a bit so, please, be sure to call before coming over to see how she is feeling.
So, all in all, course 3 has been OK, if it wasn't for the blotched intrathecal last week that started all of the problems/complications. That really started a cascade of events and set Rita back quite a bit. We are hopeful that we won't run into any of these problems this week and that we can get through this with nominal outcomes.
Goodnight for now - Take Care, Dave & Rita.
Saturday, January 22, 2011
Day 178
Hello,
Just a quick update. Things were better today. Rita walked 8 laps (6 + 2) and is feeling a little better. She had a fever this morning and we are hoping that was the last one so that she can get her next treatment on schedule. She needs to go 48 hours without a fever in order to get the next intrathecal. Keep your fingers crossed.
Rita slept alot today and I think the rest was good for her. We are in the middle of another food channel marathon. Its good to see her awake and alert. If all goes well from here, Rita will be able to stay on schedule and get her chemo on Monday. She is really focused on keeping to the schedule so that the rest of the process goes as planned. For those of you that know Rita, it is important to keep on schedule. She has been so organized all of her life and has been in control of all that is going on around her. I'm sure you can appreciate how difficult it is for her to not be able to control this process. Poor Dr. Wetzler - he has met his match here. Rita keeps challenging him and finally, he just says "There is nothing I can do about that - I'm sorry." Today, Rita didn't ask too many questions and you could see the relief on his face. I said "Doc - she let you off easy today". He didn't say anything but he did get a huge smile on his face. That's not someting you see very often so I'm sure he felt like many of us have when Rita's interrogation is over.
So, things are improving and we hope for a better day tomorrow. Thanks for all your well wishes and prayers.
Well, time to go - Love, Dave & Rita
Just a quick update. Things were better today. Rita walked 8 laps (6 + 2) and is feeling a little better. She had a fever this morning and we are hoping that was the last one so that she can get her next treatment on schedule. She needs to go 48 hours without a fever in order to get the next intrathecal. Keep your fingers crossed.
Rita slept alot today and I think the rest was good for her. We are in the middle of another food channel marathon. Its good to see her awake and alert. If all goes well from here, Rita will be able to stay on schedule and get her chemo on Monday. She is really focused on keeping to the schedule so that the rest of the process goes as planned. For those of you that know Rita, it is important to keep on schedule. She has been so organized all of her life and has been in control of all that is going on around her. I'm sure you can appreciate how difficult it is for her to not be able to control this process. Poor Dr. Wetzler - he has met his match here. Rita keeps challenging him and finally, he just says "There is nothing I can do about that - I'm sorry." Today, Rita didn't ask too many questions and you could see the relief on his face. I said "Doc - she let you off easy today". He didn't say anything but he did get a huge smile on his face. That's not someting you see very often so I'm sure he felt like many of us have when Rita's interrogation is over.
So, things are improving and we hope for a better day tomorrow. Thanks for all your well wishes and prayers.
Well, time to go - Love, Dave & Rita
Friday, January 21, 2011
Day 177
Good Evening,
OK - sorry for the lack of information this week. Actually, I didn't really know what to say. Its been a tough week. Rita had a complication with her lumbar puncture on Monday and things kind of went downhill from there. The complication from the lumbar puncture caused a leak in her spinal fluid which resulted in severe headaches everytime she sat up or stood up. As a result, she has been pretty much flat on her back all week. Then, she started retaining fluid and some of that went into her lungs. Her weight on Tuiesday morning was 127 lbs. and by Wednesday morning, she weighed 140 lbs. They need to keep the fluids up for her spinal leakage and to keep her blood pressure up but, they don't want her to retain too much as it could cause a pneumonia or other complications. The fluid in her lung has caused significant pain in her side when she takes a breath. So basically, she can't sit up or stand up or breath without experience significant pain. Other than that, she feels pretty good!! Also, she has had some fever and so, they are treating the fluid in her lung aggressively as though it is a pneumonia but, they don't know for sure. Now, just because we need one more thing, one of her lines have cultured positive for infection so they may have to replace her PICC line. We will know more about that tomorrow.
All of this is considered to be known complications from this chemo treatment so it is not anything that the doctors haven't seen before. Naturally, its all stuff that we haven't seen before so it is pretty disturbing from our point of view. Rita is really concerned that this will once more delay her transplant and thereby extend her time out here. As of right now, we are still in the window for a 2/23/11 transplant and we are keeping our fingers crossed that it goes accordingly.
On the brightger side, Rita's headaches seem to be reducing in intensity and we even walked two laps around the nursing station a little while ago. It was really hard for Rita to do this but, she did it and I take it as another important step forward. We will try again tomorrow but for tonight, we will just try to get as much sleep as possible. As you have all heard before, sleep does not come easy around here as someone is barging into the room on almost an hourly basis around the clock. Rita's normally cheerful greetings to the staff are starting to diminish!! Now its more like "What can you possibly want now???". I know that they are doing their job and I appreciate that they are keeping such a close watch over Rita. She will also realize this when she is feeling better.
So, goodnight for now. Love, Dave & Rita.
OK - sorry for the lack of information this week. Actually, I didn't really know what to say. Its been a tough week. Rita had a complication with her lumbar puncture on Monday and things kind of went downhill from there. The complication from the lumbar puncture caused a leak in her spinal fluid which resulted in severe headaches everytime she sat up or stood up. As a result, she has been pretty much flat on her back all week. Then, she started retaining fluid and some of that went into her lungs. Her weight on Tuiesday morning was 127 lbs. and by Wednesday morning, she weighed 140 lbs. They need to keep the fluids up for her spinal leakage and to keep her blood pressure up but, they don't want her to retain too much as it could cause a pneumonia or other complications. The fluid in her lung has caused significant pain in her side when she takes a breath. So basically, she can't sit up or stand up or breath without experience significant pain. Other than that, she feels pretty good!! Also, she has had some fever and so, they are treating the fluid in her lung aggressively as though it is a pneumonia but, they don't know for sure. Now, just because we need one more thing, one of her lines have cultured positive for infection so they may have to replace her PICC line. We will know more about that tomorrow.
All of this is considered to be known complications from this chemo treatment so it is not anything that the doctors haven't seen before. Naturally, its all stuff that we haven't seen before so it is pretty disturbing from our point of view. Rita is really concerned that this will once more delay her transplant and thereby extend her time out here. As of right now, we are still in the window for a 2/23/11 transplant and we are keeping our fingers crossed that it goes accordingly.
On the brightger side, Rita's headaches seem to be reducing in intensity and we even walked two laps around the nursing station a little while ago. It was really hard for Rita to do this but, she did it and I take it as another important step forward. We will try again tomorrow but for tonight, we will just try to get as much sleep as possible. As you have all heard before, sleep does not come easy around here as someone is barging into the room on almost an hourly basis around the clock. Rita's normally cheerful greetings to the staff are starting to diminish!! Now its more like "What can you possibly want now???". I know that they are doing their job and I appreciate that they are keeping such a close watch over Rita. She will also realize this when she is feeling better.
So, goodnight for now. Love, Dave & Rita.
Monday, January 17, 2011
Day 173
Good Evening,
We have completed the second Monday of course 3. This consisted of vincristine IV, MTX IV, and MTX IT (itreatheacal). All we have left is MTX pills which will be MTX pills every 6 hours for the next 18 hours and then they start the Luecovorin (rescue drug) every 6 hours until Rita's MTX level gets down to the required levels. Last week, that was on Friday so we'll see how it goes this week. Rita is feeling OK - a little tired and she feels like she has a cold. She also has some painful sores in her mouth which makes it hard to eat. She is still walking good and we just finished 13 laps around the nurses station. While we were walking, Rita would look into this one room every time around. After about 5 times, she said to me "That person has the same pillow and blanket as I do". Yup, you're right, it was our room!!
This is the most intense day of each week during course 3. Only one more to go.
Rita's numbers continue to be very good. We are hoping that when this course is finished, she will be able to come home for a little while. We do have a tentative date for her stem cell transplant - 2/23/11. We will get more information as we go along and as always, evrything is subject to change. If all goes according to plan, 2/23/11 will be considered to be Rita's new birthday. I think she is using that just to get one more present each year but, I'm fine with that!!
We continue to be optimistic and trust that with all of your prayers and positive energy, Rita will do just fine, be currred and return to her normal lifestyle - the one that has made her so special to all of us. While this experience will have a profound impact on us, I just want Rita back the way she was. That is more than anyone can ask for.
So, Goodnight for now - talk with you later, Dave & Rita.
We have completed the second Monday of course 3. This consisted of vincristine IV, MTX IV, and MTX IT (itreatheacal). All we have left is MTX pills which will be MTX pills every 6 hours for the next 18 hours and then they start the Luecovorin (rescue drug) every 6 hours until Rita's MTX level gets down to the required levels. Last week, that was on Friday so we'll see how it goes this week. Rita is feeling OK - a little tired and she feels like she has a cold. She also has some painful sores in her mouth which makes it hard to eat. She is still walking good and we just finished 13 laps around the nurses station. While we were walking, Rita would look into this one room every time around. After about 5 times, she said to me "That person has the same pillow and blanket as I do". Yup, you're right, it was our room!!
This is the most intense day of each week during course 3. Only one more to go.
Rita's numbers continue to be very good. We are hoping that when this course is finished, she will be able to come home for a little while. We do have a tentative date for her stem cell transplant - 2/23/11. We will get more information as we go along and as always, evrything is subject to change. If all goes according to plan, 2/23/11 will be considered to be Rita's new birthday. I think she is using that just to get one more present each year but, I'm fine with that!!
We continue to be optimistic and trust that with all of your prayers and positive energy, Rita will do just fine, be currred and return to her normal lifestyle - the one that has made her so special to all of us. While this experience will have a profound impact on us, I just want Rita back the way she was. That is more than anyone can ask for.
So, Goodnight for now - talk with you later, Dave & Rita.
Thursday, January 13, 2011
Day 169
Hello,
Well, we are back at the hotel. Rita was discharged from the hospital yesterday after completing the first phase of course 3. Rita gets pretty heavy doses of chemo for three days each week followed by something they call a rescue drug. That drug helps to flush the chemo out of Rita's system. They test her blood and the level of chemo (MTX) has to be below a certain point before she can be discharged. After that, we go to the clinic as an outpatient each morning until the level gets down to another level. Then, they can start the next phase 72 hours after Rita gets to that level. Rita did develop a fever last night but we didn't have to go back to the hospital because, for now, her numbers are relatively good. They did do a lot of tests today at the clinic and we will find out the results tomorrow when we need to return to the clinic. They have put her on more antibiotics as a precaution.
All in all, its going pretty good. We are keeping our fingers crossed that her fever breaks and that she won't have to be readmitted due to an infection. We have learned to be flexible as far as the schedule of treatments goes as alot of it depends on how Rita handles each treatment. Rita dosen't like the delays because it means that she will be out here a little longer with each delay. I keep telling her that it will all be worth it once she has been curred and all of this is behind her. The process can take a little longer as long as the outcome is positive.
So, we continue to move forward which is a good thing. I'll let you know more when we know more.
Take care, Dave & Rita
Well, we are back at the hotel. Rita was discharged from the hospital yesterday after completing the first phase of course 3. Rita gets pretty heavy doses of chemo for three days each week followed by something they call a rescue drug. That drug helps to flush the chemo out of Rita's system. They test her blood and the level of chemo (MTX) has to be below a certain point before she can be discharged. After that, we go to the clinic as an outpatient each morning until the level gets down to another level. Then, they can start the next phase 72 hours after Rita gets to that level. Rita did develop a fever last night but we didn't have to go back to the hospital because, for now, her numbers are relatively good. They did do a lot of tests today at the clinic and we will find out the results tomorrow when we need to return to the clinic. They have put her on more antibiotics as a precaution.
All in all, its going pretty good. We are keeping our fingers crossed that her fever breaks and that she won't have to be readmitted due to an infection. We have learned to be flexible as far as the schedule of treatments goes as alot of it depends on how Rita handles each treatment. Rita dosen't like the delays because it means that she will be out here a little longer with each delay. I keep telling her that it will all be worth it once she has been curred and all of this is behind her. The process can take a little longer as long as the outcome is positive.
So, we continue to move forward which is a good thing. I'll let you know more when we know more.
Take care, Dave & Rita
Tuesday, January 11, 2011
Day 167
Hello,
Just a quick update - Rita has finished her chemo for this week. Naturally, it will take a few days (7 to 10) before the effects of the chemos manifests themselves and we see how she responds to the treatment. We are hoping that her body clears the MTX is short order so that we can go back to the hotel for good food and good sleep. We will know more tomorrow.
Rita is feeling pretty good so far. I have noticed some slight changes in her eyes and she has been a little tired. Also, she has been just a little wobbley when we walk but her endurance is good. We will be walking again soon so I'll see how she is doing. We are happy to be on 5 West with all the familiar faces. Everyone here is so happy to see how good Rita is doing. These people have seen it all so we are encouraged by their optimisim.
So, for tonight, all is well. We are settling in for a little tv, conversation and hopefully, a few hours of uninterruprted sleep. Goodnight for now and keep the faith. We promise that we will.
Love, Dave & Rita.
Just a quick update - Rita has finished her chemo for this week. Naturally, it will take a few days (7 to 10) before the effects of the chemos manifests themselves and we see how she responds to the treatment. We are hoping that her body clears the MTX is short order so that we can go back to the hotel for good food and good sleep. We will know more tomorrow.
Rita is feeling pretty good so far. I have noticed some slight changes in her eyes and she has been a little tired. Also, she has been just a little wobbley when we walk but her endurance is good. We will be walking again soon so I'll see how she is doing. We are happy to be on 5 West with all the familiar faces. Everyone here is so happy to see how good Rita is doing. These people have seen it all so we are encouraged by their optimisim.
So, for tonight, all is well. We are settling in for a little tv, conversation and hopefully, a few hours of uninterruprted sleep. Goodnight for now and keep the faith. We promise that we will.
Love, Dave & Rita.
Monday, January 10, 2011
Day 166
Good Evening,
Well, Rita got through the first day of course 3 in pretty good shape. The intrathecal treatment went well and Rita has tolerated all of the chemo that was adminsitered today. It has made her kind of tired and she did take a couple of naps today. We were still able to get our mile of walking in and she seemed to eat OK. We do hope that we can maintain the gains we have made over the past few weeks as she will need the strength and energy for the transplant. Each Monday for the next two weeks will be the hardest part of this course. The rest of the week is pretty much pills and IV's - no needles as far as we know and Rita is getting much better at taking the pills. Now, we wait and see how this course of chemo affects her numbers. We are hoping that she will not get as far down as she has in previous courses but, we will have to wait and see.
I'll keep you posted as this course progresses.
Take care, Dave & Rita
Well, Rita got through the first day of course 3 in pretty good shape. The intrathecal treatment went well and Rita has tolerated all of the chemo that was adminsitered today. It has made her kind of tired and she did take a couple of naps today. We were still able to get our mile of walking in and she seemed to eat OK. We do hope that we can maintain the gains we have made over the past few weeks as she will need the strength and energy for the transplant. Each Monday for the next two weeks will be the hardest part of this course. The rest of the week is pretty much pills and IV's - no needles as far as we know and Rita is getting much better at taking the pills. Now, we wait and see how this course of chemo affects her numbers. We are hoping that she will not get as far down as she has in previous courses but, we will have to wait and see.
I'll keep you posted as this course progresses.
Take care, Dave & Rita
Thursday, January 6, 2011
Day 162
Good Evening,
Just wanted to update everyone on Rita's bone marrow biopsy results. How does this sound - there is no evidence of leukemia!!! She has 2% blasts which is normal. I know this sounds a little confusing but, we all have some blasts in our systems - usually less than 5% so, basically, Rita is in a normal range.
This is the result we were hoping for so we remain encouraged. We start course 3 on Monday and we don't really know what to expect. We will keep you posted on how she is doing as we move forward. It has been a great 3 weeks at home and Rita has really made alot of progress - progress that we believe will help her to sustain through the next phases of her treatment. So far, Rita has been able to hit the marks required for a successful outcome and we are confident that she will continue to meet or exceed each goal along the way. We stay focused on the outcome and continue to take comfort in Dr. Wetzler's words "You are doing outstanding". That is what we expect to hear for the rest of this process.
So, all is well. We are happy and trust that, with the assistance of your support and prayers, we are going to beat this thing.
Thank you for all of your support, prayers and acts of kindness, Dave & Rita.
Just wanted to update everyone on Rita's bone marrow biopsy results. How does this sound - there is no evidence of leukemia!!! She has 2% blasts which is normal. I know this sounds a little confusing but, we all have some blasts in our systems - usually less than 5% so, basically, Rita is in a normal range.
This is the result we were hoping for so we remain encouraged. We start course 3 on Monday and we don't really know what to expect. We will keep you posted on how she is doing as we move forward. It has been a great 3 weeks at home and Rita has really made alot of progress - progress that we believe will help her to sustain through the next phases of her treatment. So far, Rita has been able to hit the marks required for a successful outcome and we are confident that she will continue to meet or exceed each goal along the way. We stay focused on the outcome and continue to take comfort in Dr. Wetzler's words "You are doing outstanding". That is what we expect to hear for the rest of this process.
So, all is well. We are happy and trust that, with the assistance of your support and prayers, we are going to beat this thing.
Thank you for all of your support, prayers and acts of kindness, Dave & Rita.
Monday, January 3, 2011
Day 159
Hello,
We are back home from Roswell for one more week before Rita starts course 3. Today went very well. The bone marrow biopsy went smoothly - we will probably get the results on Thursday. Rita gained another 2 pounds and is now up to 126. That's 12 pounds in three weeks. I'm still shooting for 130!! Today, Rita asked Dr. Wetzler how she was doing (amoung many other things). He said, and I quote: "You are doing outstanding!!" I can't tell you how good that made us feel. Dr. Wetzler is not the type of person that would just tell you what you want to hear so, when he says "outstanding", that really means alot and that all of Rita's hard work and that all of your prayers are paying off. All of Rita's numbers are excellent. It has been a very encouraging day.
Course 3 will be 30 days with around three days of inpatient chemo each week for three weeks and then a week of rest before the next bone marrow biopsy. Rita will get chemo in her central nervous system, through and IV and orally. They will keep a close watch on her so we will probably be in Buffalo for the entire 30 days. Then, we will probably come home for a bit until the transplant. Its not just having Rita ready for the transplant but, thay have to get the donor ready also. So, the timing will be determined after the next bone marrow biopsy. Rita has let it be known that she wants to get to transplant as soon as possible. She just wants to get on with it so that she can return to a normal life style. Dr. Wetzler understands this but told us that it will all depend on how Rita does over the next course. As we have become accustomed to, we will need to stay flexible, be patient and let the process work out the way it does. We really dodn't have much control over the process but, I think we are doing the right things to have a positive affect on the outcome.
OK - enough for tonight. Goodnight, Dave & Rita
We are back home from Roswell for one more week before Rita starts course 3. Today went very well. The bone marrow biopsy went smoothly - we will probably get the results on Thursday. Rita gained another 2 pounds and is now up to 126. That's 12 pounds in three weeks. I'm still shooting for 130!! Today, Rita asked Dr. Wetzler how she was doing (amoung many other things). He said, and I quote: "You are doing outstanding!!" I can't tell you how good that made us feel. Dr. Wetzler is not the type of person that would just tell you what you want to hear so, when he says "outstanding", that really means alot and that all of Rita's hard work and that all of your prayers are paying off. All of Rita's numbers are excellent. It has been a very encouraging day.
Course 3 will be 30 days with around three days of inpatient chemo each week for three weeks and then a week of rest before the next bone marrow biopsy. Rita will get chemo in her central nervous system, through and IV and orally. They will keep a close watch on her so we will probably be in Buffalo for the entire 30 days. Then, we will probably come home for a bit until the transplant. Its not just having Rita ready for the transplant but, thay have to get the donor ready also. So, the timing will be determined after the next bone marrow biopsy. Rita has let it be known that she wants to get to transplant as soon as possible. She just wants to get on with it so that she can return to a normal life style. Dr. Wetzler understands this but told us that it will all depend on how Rita does over the next course. As we have become accustomed to, we will need to stay flexible, be patient and let the process work out the way it does. We really dodn't have much control over the process but, I think we are doing the right things to have a positive affect on the outcome.
OK - enough for tonight. Goodnight, Dave & Rita
Saturday, January 1, 2011
day 157 Happy New Year!
hi everyone! hope you are all enjoying your new year's day.. we are! mom asked me to take her on a "quick" shopping trip to return a few items from christmas and check out the sales.. 4 hours later, i had to drag her home! she's getting back to normal!! we had a great day and she's now resting while we're getting dinner ready.
mom and dad are off to buffalo tomorrow for monday's bone marrow biopsy. if all goes as planned, mom will have the procedure done around 9am and will be heading home by maybe noon-ish. mom was hoping they'd just start course 3 monday, but Dr. Wetzler said they'd have to wait for the BMB results which most likely would come wednesday or thursday... so the plan is to start course 3 on next monday.
course 3 will be 28 days long, then we're on to the stem cell transplant. we don't know exactly how all that will pan out, so as we get information, we'll share with all of you. mom's hoping she can start the stem cell transplant immediately following course 3, but we might have to wait for her numbers to go up.
mom's had such a great visit home.. she's continued to get stronger and she's been doing a lot more to take care of herself.. it's amazing to see how much progress she's made!
thank you for checking in on us, continuing to pray and follow the blog and for the uplifting cards that you have all been sending.
we would like to make a toast to all of you.. here's to a year filled with love, health and happiness, to friendships that continue to grow and to a cure for mom. cheers.
love.
mom and dad are off to buffalo tomorrow for monday's bone marrow biopsy. if all goes as planned, mom will have the procedure done around 9am and will be heading home by maybe noon-ish. mom was hoping they'd just start course 3 monday, but Dr. Wetzler said they'd have to wait for the BMB results which most likely would come wednesday or thursday... so the plan is to start course 3 on next monday.
course 3 will be 28 days long, then we're on to the stem cell transplant. we don't know exactly how all that will pan out, so as we get information, we'll share with all of you. mom's hoping she can start the stem cell transplant immediately following course 3, but we might have to wait for her numbers to go up.
mom's had such a great visit home.. she's continued to get stronger and she's been doing a lot more to take care of herself.. it's amazing to see how much progress she's made!
thank you for checking in on us, continuing to pray and follow the blog and for the uplifting cards that you have all been sending.
we would like to make a toast to all of you.. here's to a year filled with love, health and happiness, to friendships that continue to grow and to a cure for mom. cheers.
love.
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