Hello,
Well, we are still here in 5721 North at RPCI. The bone marrow biopsy scheduled for today has been rescheduled for tomorrow at 10:00 AM. We hope it really happens that way. Rita's numbers have not come back up yet and they don't really know why. They have told us that we need to wait and see what the bome marrow results are and then we will go from there. If her marrow is OK, they may give her some growth factor to help her bone marrow start producing the necessary infection fighting cells. We probably won't know about this until Wednesday or Thursday. It looks like we will be here until at least Wednesday and then, hopefully, they will let us go back to the hotel until they get this all figured out. I didn't think I'd ever say this but I think Rita is actually missing my cooking!! What does that tell you about the hospital food?
Everyone hang in there, be patient and we'll get through this like we have everything else. It's just a little more time being added to the process of getting Rita curred and back home for good.
I'll let you know when we have more information, Dave.
Monday, November 29, 2010
Friday, November 26, 2010
Day 121 (Course 2B 26)
Hi Folks,
Sorry its been a few days. We were hoping to get home by the weekend but, that didn't work out. Rita's numbers are still very low so we will be here until Monday or Tuesday at least. Rita did have her last dose of chemo yesterday so we hope that now, she will be able to see her numbers gradually return to normal. It will probably take a little longer than last time as this seems to have a cummulative affect on her ability to recover. We just need to be patient and trust in the process. Rita will have a bone marrow biopsy on Monday and that is the important one. We need to get a result of no blasts so that we know that she is still in remission. If you are looking for something to pray about, that would be a good one.
I know that we haven't been too good at communicating the last few days but, it was a little bit of a tough time so we just tried to support each other and tried to get the time to pass. I'm sure you can relate to that feeling of just wanting to get on with it and yet, making sure that not one minute is taken for granted. Today, I ran out and got some cards so that we could play some games to pass the time. We decided on pitch to start out and Rita beat me the first game. We thought we would change it up a little so we added a kitty for the second game. I won. Rita said "I don't like playing with a kitty - it makes it too easy". The rubber match will be played without a kitty!!
We are hoping to get some better numbers tomorrow and look forward to being home for a break before we start course 3. We just don't know how this will play out so we will let you know when we know for sure. We don't like posting some information only to find out that it changes. We know that all of you are pulling for us and that when things change, you feel it too. Sometimes its better to just wait and see and then post what has happened as opposed to what might happen. We'll try to get better at that.
From a strength and endurance standpoint, Rita is doing great. She is walking over a mile each day with no assistance. Today, she started using a stair stepper and is doing really good with that. I have a feeling that by the time we come home, there will be no more need for the walker and Rita will feel pretty normal around the house. I don't think she will attack the stairs but, you never know with her. I've heard her say that she hid some Christmas presents upstairs at the house. She just may insist on getting them herself. If she does, I'll make sure that she is safe and that she only does what she is capable of doing. After all, she always can send me up to get them - maybe one is for me!!
OK, thats it for tonight. We are going to do a little more excersising and then maybe a movie.
Good night and God Bless, Dave & Rita.
Sorry its been a few days. We were hoping to get home by the weekend but, that didn't work out. Rita's numbers are still very low so we will be here until Monday or Tuesday at least. Rita did have her last dose of chemo yesterday so we hope that now, she will be able to see her numbers gradually return to normal. It will probably take a little longer than last time as this seems to have a cummulative affect on her ability to recover. We just need to be patient and trust in the process. Rita will have a bone marrow biopsy on Monday and that is the important one. We need to get a result of no blasts so that we know that she is still in remission. If you are looking for something to pray about, that would be a good one.
I know that we haven't been too good at communicating the last few days but, it was a little bit of a tough time so we just tried to support each other and tried to get the time to pass. I'm sure you can relate to that feeling of just wanting to get on with it and yet, making sure that not one minute is taken for granted. Today, I ran out and got some cards so that we could play some games to pass the time. We decided on pitch to start out and Rita beat me the first game. We thought we would change it up a little so we added a kitty for the second game. I won. Rita said "I don't like playing with a kitty - it makes it too easy". The rubber match will be played without a kitty!!
We are hoping to get some better numbers tomorrow and look forward to being home for a break before we start course 3. We just don't know how this will play out so we will let you know when we know for sure. We don't like posting some information only to find out that it changes. We know that all of you are pulling for us and that when things change, you feel it too. Sometimes its better to just wait and see and then post what has happened as opposed to what might happen. We'll try to get better at that.
From a strength and endurance standpoint, Rita is doing great. She is walking over a mile each day with no assistance. Today, she started using a stair stepper and is doing really good with that. I have a feeling that by the time we come home, there will be no more need for the walker and Rita will feel pretty normal around the house. I don't think she will attack the stairs but, you never know with her. I've heard her say that she hid some Christmas presents upstairs at the house. She just may insist on getting them herself. If she does, I'll make sure that she is safe and that she only does what she is capable of doing. After all, she always can send me up to get them - maybe one is for me!!
OK, thats it for tonight. We are going to do a little more excersising and then maybe a movie.
Good night and God Bless, Dave & Rita.
Tuesday, November 23, 2010
Day 118 (Course 2B 23)
Hello,
I back out here in Buffalo. Rita is doing OK but it looks like we will be spending Thanksgiving in room 5721 at Roswell 5 North. At least we will be together. Rita's numbers have not recovered to the point that she can be discharged and it may be next week before we see that. It seems that everytime we get some good news, it is almost immediately followed by some knid of complication. Some of you might remember that when Rita was in course 1, she became orthostatic (low blood pressure) and would pass out when she stood up. Well now, her blood pressure is high and they are trying to bring it down. Hopefully that just means that her body is adjusting back to normal and it will get her off of a few pills. That would be a nice bit of news for her as she hates taiking all of these pills.
They brought a bed fort into the room for me so I'll be able to stay with Rita. That makes us both feel better. Not much else to say at the moment so goodnight and God Bless, Dave & Rita.
I back out here in Buffalo. Rita is doing OK but it looks like we will be spending Thanksgiving in room 5721 at Roswell 5 North. At least we will be together. Rita's numbers have not recovered to the point that she can be discharged and it may be next week before we see that. It seems that everytime we get some good news, it is almost immediately followed by some knid of complication. Some of you might remember that when Rita was in course 1, she became orthostatic (low blood pressure) and would pass out when she stood up. Well now, her blood pressure is high and they are trying to bring it down. Hopefully that just means that her body is adjusting back to normal and it will get her off of a few pills. That would be a nice bit of news for her as she hates taiking all of these pills.
They brought a bed fort into the room for me so I'll be able to stay with Rita. That makes us both feel better. Not much else to say at the moment so goodnight and God Bless, Dave & Rita.
Monday, November 22, 2010
Day 117 (Course 2b Day 22)
Not much news to report today. Mom's numbers aren't going up as quickly as we had hoped for. That means she's probably going to be stuck in the hospital a little longer than originally anticipated and possibly through Thanksgiving. Hopefully she will be able to get home for the weekend, though. Her blood pressure has been a little wacky today as well so hopefully that regulates and works itself out.
On the plus side, Mom's appetite is getting right back on track! She ate most of her lunch and dinner and some of the "crap" is even tasting good to her. The more nutrition she gets the better so I'm hoping she goes on another shrimp binge soon. Maybe it'll be turkey this time.
Mom's sad that she can't sleep in the hotel room, but I have a sneaking suspicion that if she were in the hotel, she'd want to be in the hospital. That sneaking suspicion comes in the form of a 100 ft crane that is parked right outside our hotel window and spends the majority of the day ramming giant steel beams into the ground... beginning at 7am. I'm sure she'll sleep better once dad gets here. They brought in one of those fort beds today so he can stay right in the room with her - she's looking forward to that.
That's it for now. Take Care.
Amy
On the plus side, Mom's appetite is getting right back on track! She ate most of her lunch and dinner and some of the "crap" is even tasting good to her. The more nutrition she gets the better so I'm hoping she goes on another shrimp binge soon. Maybe it'll be turkey this time.
Mom's sad that she can't sleep in the hotel room, but I have a sneaking suspicion that if she were in the hotel, she'd want to be in the hospital. That sneaking suspicion comes in the form of a 100 ft crane that is parked right outside our hotel window and spends the majority of the day ramming giant steel beams into the ground... beginning at 7am. I'm sure she'll sleep better once dad gets here. They brought in one of those fort beds today so he can stay right in the room with her - she's looking forward to that.
That's it for now. Take Care.
Amy
Saturday, November 20, 2010
Day 115 (course 2B 20)
Hello,
I'll try to keep this brief but I have quite a bit of news. First of all, as you may know, they have found a donor for Rita that is a 100% match (non-relative). So, somewhere out there is a person that is willing to give the gift of life to Rita. I can't even begin to express how I feel knowing this. God bless you whoever you are and wherever you are. May you stay healthy and safe and may God provide you with all that you need to live a long, productive, happy and fulfilling life. We are told that after one year, we can get the information as to who the donor is. What a wonderful day it will be when we can meet that person face to face. I'm sure that they will feel great satisfaction when they get to see what an amazing person Rita is. We have learned that the donor will go through about 4 days of preparation and donation and that they will overnight the cells to Rita as fresh cells. I ask that everyone pray for the donor, and that the people who will be responsible for transporting the stem cells are able to make the delivery according to the required schedule. Needless to say, all of this is pretty critical.
The schedule is getting more focused. Rita will have her last chemo treatment for course 2B on Thanksgiving morning. If all goes well, we will be able to go home Thanksgiving day - a little later in the afternoon. Also, it looks like Rita will be able to be home for Christmas as she should be released on December 22 or 23 from
course 3. If all of that goes according to plan, her transplant would start the week of January 3 or January 10. It all seems to be coming so fast. It is really interesting how this process feels like forever and yet, when we look at what is before us, its like a run away train. We are anxious to get on with this so that we can return to a normal, healthy life but, we also know the risks involved.
So, for now, we are doing OK out here. It is a bit of a bummer that Rita is in the hospital because she feels a little confined and we can't do the things we normally do in the hotel room. I usually get to cook for her and, believe it or not, I think she likes my cooking much better than the hospital's. Thats probably not saying much but I'll take all of the props I can get!! I will have to go back home tomorrow and Amy will be coming out for a couple of days. If Rita gets discharged on Tuesday, I'll be back here to move her back into the hotel room and stay until we come home on Thanksgiving day. I hope it all works out as planned.
Did someone say that I would try to keep this brief? So much for that!!
Goodnight and God Bless, Dave & Rita
I'll try to keep this brief but I have quite a bit of news. First of all, as you may know, they have found a donor for Rita that is a 100% match (non-relative). So, somewhere out there is a person that is willing to give the gift of life to Rita. I can't even begin to express how I feel knowing this. God bless you whoever you are and wherever you are. May you stay healthy and safe and may God provide you with all that you need to live a long, productive, happy and fulfilling life. We are told that after one year, we can get the information as to who the donor is. What a wonderful day it will be when we can meet that person face to face. I'm sure that they will feel great satisfaction when they get to see what an amazing person Rita is. We have learned that the donor will go through about 4 days of preparation and donation and that they will overnight the cells to Rita as fresh cells. I ask that everyone pray for the donor, and that the people who will be responsible for transporting the stem cells are able to make the delivery according to the required schedule. Needless to say, all of this is pretty critical.
The schedule is getting more focused. Rita will have her last chemo treatment for course 2B on Thanksgiving morning. If all goes well, we will be able to go home Thanksgiving day - a little later in the afternoon. Also, it looks like Rita will be able to be home for Christmas as she should be released on December 22 or 23 from
course 3. If all of that goes according to plan, her transplant would start the week of January 3 or January 10. It all seems to be coming so fast. It is really interesting how this process feels like forever and yet, when we look at what is before us, its like a run away train. We are anxious to get on with this so that we can return to a normal, healthy life but, we also know the risks involved.
So, for now, we are doing OK out here. It is a bit of a bummer that Rita is in the hospital because she feels a little confined and we can't do the things we normally do in the hotel room. I usually get to cook for her and, believe it or not, I think she likes my cooking much better than the hospital's. Thats probably not saying much but I'll take all of the props I can get!! I will have to go back home tomorrow and Amy will be coming out for a couple of days. If Rita gets discharged on Tuesday, I'll be back here to move her back into the hotel room and stay until we come home on Thanksgiving day. I hope it all works out as planned.
Did someone say that I would try to keep this brief? So much for that!!
Goodnight and God Bless, Dave & Rita
Friday, November 19, 2010
Day 114 (Course 2B 19)
Hello,
Another good day out here in Buffalo. Rita is doing well and continues to improve her strength and endurance. Many of you may remember that after Rita beat breast cancer, she trained and ran the Boilermaker in July, 1996. Well, on the unit here, 33 laps around the unit is one mile. Today she did 40 laps!! All without her walker and some not even holding my hand - totally independent!! I'm beginning to wonder if there is another Boilermaker in my future. I think I better start excersing a little myself so that I can keep up. Nothing that Rita accomplishes surprises me. She has taken this little speed bump as an apportunity to let leukemia know that it has met its match. Its kind of like the Charlie Daniels song with Johnny, the devil and the fiddle - leukemia is the devil and Rita is Johnny. Soon, the devil will know it has been beaten by the best.
As you can probably tell, I am so proud of Rita. She just continues to amaze us and give us strength to keep going. Funny, aren't we supposed to be doing that for her? Some things just don't change. No matter how difficult this is, and for Rita it is harder than we can imagine, she refuses to give up and works hard to go the extra mile.
OK for now - Goodnight, Dave & Rita
Another good day out here in Buffalo. Rita is doing well and continues to improve her strength and endurance. Many of you may remember that after Rita beat breast cancer, she trained and ran the Boilermaker in July, 1996. Well, on the unit here, 33 laps around the unit is one mile. Today she did 40 laps!! All without her walker and some not even holding my hand - totally independent!! I'm beginning to wonder if there is another Boilermaker in my future. I think I better start excersing a little myself so that I can keep up. Nothing that Rita accomplishes surprises me. She has taken this little speed bump as an apportunity to let leukemia know that it has met its match. Its kind of like the Charlie Daniels song with Johnny, the devil and the fiddle - leukemia is the devil and Rita is Johnny. Soon, the devil will know it has been beaten by the best.
As you can probably tell, I am so proud of Rita. She just continues to amaze us and give us strength to keep going. Funny, aren't we supposed to be doing that for her? Some things just don't change. No matter how difficult this is, and for Rita it is harder than we can imagine, she refuses to give up and works hard to go the extra mile.
OK for now - Goodnight, Dave & Rita
Thursday, November 18, 2010
Day 113 (Course 2B 18)
Good Evening,
It has been a little interesting since our last post. Rita developed a temperature of 101.8 on Tuesday evening and so we had to go over to the hospital. We got here around 11:00 PM and were up most of the night. They got her right into a room (5721 on 5 North), took blood, examined her and after they got her numbers back, we were told that Rita would have to be admitted. So, here we are - inpatient status. Needless to say, Rita is not too happy about that. The reason is because Rita is neutropenic again and, with the fever indicating a possible infection, she has to stay in the hospital until they get lab results back as to the cause. That will take us into the weekend so she will be here until Monday at least. She is feeling good and her temperature has gone away so it will be a matter of watching and waiting until the test results come back. We expect that this too will pass and we will be into the last week of course 2B and then, hopefully a little break back home. Keep your fingers crossed.
Goodnight for now, Dave & Rita
It has been a little interesting since our last post. Rita developed a temperature of 101.8 on Tuesday evening and so we had to go over to the hospital. We got here around 11:00 PM and were up most of the night. They got her right into a room (5721 on 5 North), took blood, examined her and after they got her numbers back, we were told that Rita would have to be admitted. So, here we are - inpatient status. Needless to say, Rita is not too happy about that. The reason is because Rita is neutropenic again and, with the fever indicating a possible infection, she has to stay in the hospital until they get lab results back as to the cause. That will take us into the weekend so she will be here until Monday at least. She is feeling good and her temperature has gone away so it will be a matter of watching and waiting until the test results come back. We expect that this too will pass and we will be into the last week of course 2B and then, hopefully a little break back home. Keep your fingers crossed.
Goodnight for now, Dave & Rita
Wednesday, November 17, 2010
Day 112 (Course 2B Day 17)
Good Evening,
I am back here in Buffalo. I got here yesterday and Amy went back home. Rita is doing pretty good and today we pretty much laid low. I worked on my computer and Rita rested. She did want some KFC so I made a quick run to get her some. We keep trying to find things that she likes to eat - we need to fatten her up a bit. She ate pretty well so, maybe the KFC will help.
Tomorrow is another clinic day so we'll be up early and see what the day brings. Supplies are getting a little low here so I think a Wegman's trip will be a part of the day. I hope Rita's numbers are good enough to go with me because it gives her a good diversion to be able to go out and, to no ones suprise, shopping is what she does best. So far, her numbers seem to be holding better this time than last. I think it is because the leukemia is being held in check. I hope I'm right.
There's not much more to report so I'll say goodnight for now.
God Bless to All, Dave & Rita.
I am back here in Buffalo. I got here yesterday and Amy went back home. Rita is doing pretty good and today we pretty much laid low. I worked on my computer and Rita rested. She did want some KFC so I made a quick run to get her some. We keep trying to find things that she likes to eat - we need to fatten her up a bit. She ate pretty well so, maybe the KFC will help.
Tomorrow is another clinic day so we'll be up early and see what the day brings. Supplies are getting a little low here so I think a Wegman's trip will be a part of the day. I hope Rita's numbers are good enough to go with me because it gives her a good diversion to be able to go out and, to no ones suprise, shopping is what she does best. So far, her numbers seem to be holding better this time than last. I think it is because the leukemia is being held in check. I hope I'm right.
There's not much more to report so I'll say goodnight for now.
God Bless to All, Dave & Rita.
Monday, November 15, 2010
Day 110 (Course 2b Day 15)
Mom had a VERY long day today.
We started off a little early (7:40ish) because Mom was feeling a little weak and short of breath this morning. She was nervous we wouldn't make it to the clinic on time so we left about 20 mins early and got there with plenty of time to spare. They wouldn't even check us in it was so packed. We had to wait until 15 mins before her 9am appointment to even hand in her papers. She got called in a lot quicker than some of the other patients, some of whom were there since 6:30!
Mom had a really nice Nurse today - Ava - which was a good thing because she spent a lot of time with her. Her numbers were good as far as her white blood cells and neutrophils go (really good compared to course 2A) but she had quite a bit of red blood and hemoglobin that needed boosting... 30 mins of platelets, 4 hours of blood, 30 mins of chemo, and 2 hours of observation. She hasn't had to go back on antibiotics so that's 3 less pills and 1 less hour of IV per day that she has to deal with on the 2nd half of this course.
I had some work to tend to so Mom spent a big part of the day watching TV, reading magazines and half napping - but stuck in that chair. It wasn't a trip to Niagara Falls, but at least she felt better after all that work. She's already turned in for the night and is looking forward to sleeping in tomorrow.
Amy
We started off a little early (7:40ish) because Mom was feeling a little weak and short of breath this morning. She was nervous we wouldn't make it to the clinic on time so we left about 20 mins early and got there with plenty of time to spare. They wouldn't even check us in it was so packed. We had to wait until 15 mins before her 9am appointment to even hand in her papers. She got called in a lot quicker than some of the other patients, some of whom were there since 6:30!
Mom had a really nice Nurse today - Ava - which was a good thing because she spent a lot of time with her. Her numbers were good as far as her white blood cells and neutrophils go (really good compared to course 2A) but she had quite a bit of red blood and hemoglobin that needed boosting... 30 mins of platelets, 4 hours of blood, 30 mins of chemo, and 2 hours of observation. She hasn't had to go back on antibiotics so that's 3 less pills and 1 less hour of IV per day that she has to deal with on the 2nd half of this course.
I had some work to tend to so Mom spent a big part of the day watching TV, reading magazines and half napping - but stuck in that chair. It wasn't a trip to Niagara Falls, but at least she felt better after all that work. She's already turned in for the night and is looking forward to sleeping in tomorrow.
Amy
Thursday, November 11, 2010
Day 106 (Course 2B day 11)
Hi Folks,
Today was a clinic day and all is well out here. Rita needed some platelets so they gave her an infusion which didn't take too long. Rita's counts were still OK so, we went to Wegman's for some supplies. She had a craving for a chicken sandwich and chocolate shake so we swank into Wendy's and picked up her food. As is often the case, the food didn't really meet her expectations but, she ate pretty good and we were off to Wegman's. The grocery sopping was fun and we returned to the room here at the Double Tree. The rest of the afternoon has been restful. I gave Rita her last chemo shot today (hopefully the last one for good) and we both feel better that we won't have to do that again - at lest for awhile. I've heard from some of you regarding yesterday's blog. I hope you all know that it is the cumulative effect of all y0u're prayers and support that helps to keep us going. We definitely feel that, while it is Rita's fight, we are all in this together. So, thanks for all that you are doing. It is humbling to know how many people are sharing this experience with us. We will all be able to share stories of how this affected us when Rita is curred and back to normal. That will be fun!!
Goodnight and a Heartfull Thank You, Dave & Rita
Today was a clinic day and all is well out here. Rita needed some platelets so they gave her an infusion which didn't take too long. Rita's counts were still OK so, we went to Wegman's for some supplies. She had a craving for a chicken sandwich and chocolate shake so we swank into Wendy's and picked up her food. As is often the case, the food didn't really meet her expectations but, she ate pretty good and we were off to Wegman's. The grocery sopping was fun and we returned to the room here at the Double Tree. The rest of the afternoon has been restful. I gave Rita her last chemo shot today (hopefully the last one for good) and we both feel better that we won't have to do that again - at lest for awhile. I've heard from some of you regarding yesterday's blog. I hope you all know that it is the cumulative effect of all y0u're prayers and support that helps to keep us going. We definitely feel that, while it is Rita's fight, we are all in this together. So, thanks for all that you are doing. It is humbling to know how many people are sharing this experience with us. We will all be able to share stories of how this affected us when Rita is curred and back to normal. That will be fun!!
Goodnight and a Heartfull Thank You, Dave & Rita
Wednesday, November 10, 2010
Day 105 (Course 2 day 10)
Hello Everyone,
I'm back out here in Buffalo - thanks to Amy for doing a great job for the past few days. As I'm sure you all can understand, it is hard to be back home and away from Rita. I always feel so much better being her with her. I am so happy to see how well she is doing this time around. Her numbers are staying better, she looks great and is so much stronger than she was during course 1 and 2A. I think we have learned how to give her the things she needs (fluids, foods and other nourishment's) that she has been able to not only maintain her strength but to continue to get even stronger. This evening, we walked 5 laps in the hallway - three of them without her walker-and this is more than she has done before. At the end, Rita said "tomorrow we will do one more than today". That is where her mind, body and spirit is. Tomorrow will be better than today. For all of you that know Rita, I'm sure this is no surprise to you. We still have a long way to go but, at the same time, we have come so far. Rita is definitely doing the right things to make sure that this is a success story. I'm so proud of her. We all know that the focus of Rita's life has always been what she can do for all of us. I think she now understands how much we all depend on her and that, when we do things to help her now, we are really just helping ourselves. That makes it easier for her to accept that, for now, its OK if we wait on her. I'm sure she will do everything she can to make it even when she gets well - its just the way she is and I look forward to that day.
OK enough for tonight - we send our love and thank you for your prayers, Dave & Rita
I'm back out here in Buffalo - thanks to Amy for doing a great job for the past few days. As I'm sure you all can understand, it is hard to be back home and away from Rita. I always feel so much better being her with her. I am so happy to see how well she is doing this time around. Her numbers are staying better, she looks great and is so much stronger than she was during course 1 and 2A. I think we have learned how to give her the things she needs (fluids, foods and other nourishment's) that she has been able to not only maintain her strength but to continue to get even stronger. This evening, we walked 5 laps in the hallway - three of them without her walker-and this is more than she has done before. At the end, Rita said "tomorrow we will do one more than today". That is where her mind, body and spirit is. Tomorrow will be better than today. For all of you that know Rita, I'm sure this is no surprise to you. We still have a long way to go but, at the same time, we have come so far. Rita is definitely doing the right things to make sure that this is a success story. I'm so proud of her. We all know that the focus of Rita's life has always been what she can do for all of us. I think she now understands how much we all depend on her and that, when we do things to help her now, we are really just helping ourselves. That makes it easier for her to accept that, for now, its OK if we wait on her. I'm sure she will do everything she can to make it even when she gets well - its just the way she is and I look forward to that day.
OK enough for tonight - we send our love and thank you for your prayers, Dave & Rita
Monday, November 8, 2010
Day 103 (Course 2b Day 8)
Hopefully the above numbers regarding the progress are accurate. I've been trying to figure it out based on the last post for a few minutes now and I just give up! I think it's at the point where every day is Day blah blah blah Course 2blur Day blah blah blah! Seriously though - Mom's come a long way. We still have quite a bit to go but the shock has worn off and the routine has kind of taken over. It's nice knowing where Mom stands - great doctors, a great hotel to stay in, a bone marrow match from the donor bank, and we've gotten used to the schedules. The whole experience has an element of trial and error and we know now how to avoid some of the pitfalls Mom's had so far - drinking fluids, staying as active as possible, keeping a hearty, healthy diet, etc. There's still going to be highs and lows but we're getting better at recognizing when a low is on it's way and figuring out how to foil its plan to ruin Mom's day.
Today Mom had an early clinic appointment. They were a little short staffed so it took a little longer than usual but Mom's numbers were right where they should be. She had to have a couple hours of blood to get her hemoglobin up but that's pretty standard. She felt great today and everything went pretty smoothly. She doesn't have to go back to clinic until Thursday so the next couple days she'll be resting, getting a little exercise in and trying to eat as much as possible.
She hopes everyone is doing well and sends her love to you all!
Love,
Amy
Today Mom had an early clinic appointment. They were a little short staffed so it took a little longer than usual but Mom's numbers were right where they should be. She had to have a couple hours of blood to get her hemoglobin up but that's pretty standard. She felt great today and everything went pretty smoothly. She doesn't have to go back to clinic until Thursday so the next couple days she'll be resting, getting a little exercise in and trying to eat as much as possible.
She hopes everyone is doing well and sends her love to you all!
Love,
Amy
Friday, November 5, 2010
day 100
Day 100 - Sometimes it dosen't seem possible that Rita has been fighting this for so long. And there is so much further to go. Today was pretty good. Rita does seem to get a little stronger each day. Naturally, there are times when it just all seems overwhelming to her but she rallies and continues to keep her eye on the goal. It's the cure that keeps her (us) going. I don't have much news - we will be going to the clinic tomorrow morning and hopefully it will just be a quick check on her numbers. If all is good, we will do a little shopping and then back here to relax and enjoy the day. They say there might be a little snow tomorrow - the seasons keep changing - we have gone from summer to fall and now into winter out here. Spring will bring us full circle and hopefully Rita will be back to fully recovered.
Everyone stay strong and keep the prayers coming. I'm sure they are working.
Goodnight and God Bless, Dave
Everyone stay strong and keep the prayers coming. I'm sure they are working.
Goodnight and God Bless, Dave
Thursday, November 4, 2010
Day 99 (course 2b day 4)
I'm still here... sorry we didn't post yesterday.. we had an interesting day...
Mom woke up yesterday feeling not as good as usual, but not terrible either. she looked a little flush, but her temperature stayed around normal so we didn't think there was anything wrong. dad called around 9 and said he was on his way, so we knew we had to get moving a little earlier than mom likes.. when we went to the living room, i took her temp again and it shot up to 100.6... that's not so good. we're supposed to go to the emergency room if her temp is above 100.4. mom tried convincing me that it was just because she was bundled up like an eskimo, so we took all the blankets off, took away her rice bag and waited 10 minutes... her temp did drop to 99.3... then she tried chugging cold water and taking her temp again.. i didn't fall for that one.. 10 minutes later her temp was back up to 100.5 so I called the clinic. they said they wanted to see her, they were very busy, but as soon as a room opened they'd call back and we could go over. That was 11:25... I knew dad was only 30 minutes away so we just sat tight and waited for the clinic to call back... and waited... and waited...... finally at 3:00 we got the call to come right over, they were ready for us.. thank god this isn't an emergency, we thought... oh wait.. they told us it was.. nevermind...
3:05: at the clinic... we checked in, evidently they didn't know they had a room ready for us because we didn't get called in until after 4:00. Blood cultures and labs were drawn and sent in around 4:30, which we knew meant we wouldn't have results until at least 5:30... we were right.. around 5:45 they came back and said they were bringing some tylenol in and Dr. Griffiths would be right in... that was a bright spot in our day. She's always so compassionate, genuinely interested and caring when we see her. she said mom's labs looked to be alright, and that we did the right thing by bringing her in, but as long as she's not neutropenic, we didn't need to bring her back in unless her temp went above 101. She explained that the low grade fever could be a side effect of the chemo shot she gets, and as long as the fever isn't accompanied by cough, chills, aches etc, she's fine.. whew! we were also told that because she had her labs done then, she didn't need to come for her early thursday appointment.. that made mom happy! So now she's off until saturday.
by the time we saw Dr. Griffiths and had mom's pic line bandages and caps changed, it was almost 7pm! I decided to stay to help get mom settled as dad ran out to walgreens to get some prescribed pedialyte..
we're all good here today, mom feels pretty good and she's happy she was able to sleep in till almost 10!
the rest of the day will bring some lounging, some walking and stair stepping, and probably some food tv and fox news..
I'm shoving off shortly... it was a good, at times interesting, visit and mom's still looking so strong and healthy. it always makes it so much easier to leave when I can see for myself how good she looks.
that's it for now.. hopefully dad will update later!
love.
Mom woke up yesterday feeling not as good as usual, but not terrible either. she looked a little flush, but her temperature stayed around normal so we didn't think there was anything wrong. dad called around 9 and said he was on his way, so we knew we had to get moving a little earlier than mom likes.. when we went to the living room, i took her temp again and it shot up to 100.6... that's not so good. we're supposed to go to the emergency room if her temp is above 100.4. mom tried convincing me that it was just because she was bundled up like an eskimo, so we took all the blankets off, took away her rice bag and waited 10 minutes... her temp did drop to 99.3... then she tried chugging cold water and taking her temp again.. i didn't fall for that one.. 10 minutes later her temp was back up to 100.5 so I called the clinic. they said they wanted to see her, they were very busy, but as soon as a room opened they'd call back and we could go over. That was 11:25... I knew dad was only 30 minutes away so we just sat tight and waited for the clinic to call back... and waited... and waited...... finally at 3:00 we got the call to come right over, they were ready for us.. thank god this isn't an emergency, we thought... oh wait.. they told us it was.. nevermind...
3:05: at the clinic... we checked in, evidently they didn't know they had a room ready for us because we didn't get called in until after 4:00. Blood cultures and labs were drawn and sent in around 4:30, which we knew meant we wouldn't have results until at least 5:30... we were right.. around 5:45 they came back and said they were bringing some tylenol in and Dr. Griffiths would be right in... that was a bright spot in our day. She's always so compassionate, genuinely interested and caring when we see her. she said mom's labs looked to be alright, and that we did the right thing by bringing her in, but as long as she's not neutropenic, we didn't need to bring her back in unless her temp went above 101. She explained that the low grade fever could be a side effect of the chemo shot she gets, and as long as the fever isn't accompanied by cough, chills, aches etc, she's fine.. whew! we were also told that because she had her labs done then, she didn't need to come for her early thursday appointment.. that made mom happy! So now she's off until saturday.
by the time we saw Dr. Griffiths and had mom's pic line bandages and caps changed, it was almost 7pm! I decided to stay to help get mom settled as dad ran out to walgreens to get some prescribed pedialyte..
we're all good here today, mom feels pretty good and she's happy she was able to sleep in till almost 10!
the rest of the day will bring some lounging, some walking and stair stepping, and probably some food tv and fox news..
I'm shoving off shortly... it was a good, at times interesting, visit and mom's still looking so strong and healthy. it always makes it so much easier to leave when I can see for myself how good she looks.
that's it for now.. hopefully dad will update later!
love.
Tuesday, November 2, 2010
Day 97 (Course 2B day 2)
Hi everyone.. not much to report here! We had a pretty relaxing day.. didn't wake up until 9ish and lounged around reading magazines until after noon! The nurse came and taught me how to administer the chemo shot and I did that no problem.. then I went to wegmans to get a few things for mom. Mom wanted to come, but as the day went on, she thought maybe it would be better to just stay back and rest a bit more!
We've done some stair stepper exercises, walked a little bit and will probably do a few more exercise sessions before dinner and bed tonight!
Mom's feeling really good and is looking forward to a good night's sleep and a relaxing morning before dad comes out tomorrow for the rest of the week.
that's it for now!
love.
We've done some stair stepper exercises, walked a little bit and will probably do a few more exercise sessions before dinner and bed tonight!
Mom's feeling really good and is looking forward to a good night's sleep and a relaxing morning before dad comes out tomorrow for the rest of the week.
that's it for now!
love.
Monday, November 1, 2010
Day 96 (course 2B day 1)
Hello! Yes, we're still here... we've just been so busy lately... mom had a great SHORT weekend home.. a few nights to rest, relax and refresh before starting course 2B (same as 2A... 28 days long). I brought her back on sunday and will be here until wednesday when dad comes for the rest of the week...
our day today started out a bit on the cloudy side.. we had to get up to leave the hospital by 6:35 for our 7am appointment for intrathecal.. we were on time.. surprisingly.. but the clinic didn't open until 7, and the large mass of people waiting out in the lobby rushed the door as soon as it opened, and we ended up like 50th in line... we were still optimistic that it wasn't that big of a deal because we had an appointment with Dr. Wetzler.. well that didn't seem to matter to anyone.. we got called in for blood labs around 8:40 (labs take an hour to get back) and we then knew we wouldn't be called in until almost 10. we were right.. many people were extra cranky this morning.. nothing seemed to be going right and some ornery woman was trying to start a tea party in the waiting room... mom chimed in for 1 second and i said... being negative gets you nowhere, we need to stay positive.. thank god the ring leader got called in and the crowd silenced..
at 10ish we were called in and waited a bit longer.. our nurse had been on a leave for 5 weeks and evidently all of the processes at the hospital underwent a major transformation, because she had no idea what she was doing and kept reminding us... at first we were a little leery.. but she turned out to be really nice and tuned back into earth pretty quickly. Mom then got some saline, some chemo, some nausea meds and some anxiety meds.. then Dr Wetzler showed up dressed as R2D2, and our day instantly got better. He said mom's numbers were excellent.. she looked excellent (except that she needed to eat more and gain weight) and he did the lumbar puncture without mom hardly knowing it was happening. she felt a slight pinch and that was it! he was in, the spinal fluid was drawn, chemo administered and we were resting for an hour! Mom felt great... she got her chemo shot.. barely felt it.. and we were off to the hotel for lunch.
While waiting for our shuttle back to the DoubleTree, we saw Jennifer (from transplant) she said she had started working on finding the matches from the donor bank. mom was relieved because we learned last week that course 3 was 28 days instead of 70.. so we could be running short on time for looking for matches.. Jennifer promised she'd call as soon as she heard anything. That was about 2pm.. we caught our shuttle and grabbed a salad and a sandwich from the hotel bistro. While enjoying her first salad since July, mom got a phone call from Jennifer and they found a 100% match! We were so excited.. that's one prayer answered, thank you god!!! They are going to look for a back-up, but she'll contact that match and get the process rolling.. thank you for praying with us.
we took a rather long nap after lunch and are just moving about, going to get some dinner, do some exercises and head back to bed. What started out as a rather cloudy day turned into a beautifully sunny day!
we hope tomorrow brings us a restful, happy, pain free day.. maybe even a trip to wegmans! We'll let you know.
thank you again.. keep those prayers coming.. they're working.
love.
our day today started out a bit on the cloudy side.. we had to get up to leave the hospital by 6:35 for our 7am appointment for intrathecal.. we were on time.. surprisingly.. but the clinic didn't open until 7, and the large mass of people waiting out in the lobby rushed the door as soon as it opened, and we ended up like 50th in line... we were still optimistic that it wasn't that big of a deal because we had an appointment with Dr. Wetzler.. well that didn't seem to matter to anyone.. we got called in for blood labs around 8:40 (labs take an hour to get back) and we then knew we wouldn't be called in until almost 10. we were right.. many people were extra cranky this morning.. nothing seemed to be going right and some ornery woman was trying to start a tea party in the waiting room... mom chimed in for 1 second and i said... being negative gets you nowhere, we need to stay positive.. thank god the ring leader got called in and the crowd silenced..
at 10ish we were called in and waited a bit longer.. our nurse had been on a leave for 5 weeks and evidently all of the processes at the hospital underwent a major transformation, because she had no idea what she was doing and kept reminding us... at first we were a little leery.. but she turned out to be really nice and tuned back into earth pretty quickly. Mom then got some saline, some chemo, some nausea meds and some anxiety meds.. then Dr Wetzler showed up dressed as R2D2, and our day instantly got better. He said mom's numbers were excellent.. she looked excellent (except that she needed to eat more and gain weight) and he did the lumbar puncture without mom hardly knowing it was happening. she felt a slight pinch and that was it! he was in, the spinal fluid was drawn, chemo administered and we were resting for an hour! Mom felt great... she got her chemo shot.. barely felt it.. and we were off to the hotel for lunch.
While waiting for our shuttle back to the DoubleTree, we saw Jennifer (from transplant) she said she had started working on finding the matches from the donor bank. mom was relieved because we learned last week that course 3 was 28 days instead of 70.. so we could be running short on time for looking for matches.. Jennifer promised she'd call as soon as she heard anything. That was about 2pm.. we caught our shuttle and grabbed a salad and a sandwich from the hotel bistro. While enjoying her first salad since July, mom got a phone call from Jennifer and they found a 100% match! We were so excited.. that's one prayer answered, thank you god!!! They are going to look for a back-up, but she'll contact that match and get the process rolling.. thank you for praying with us.
we took a rather long nap after lunch and are just moving about, going to get some dinner, do some exercises and head back to bed. What started out as a rather cloudy day turned into a beautifully sunny day!
we hope tomorrow brings us a restful, happy, pain free day.. maybe even a trip to wegmans! We'll let you know.
thank you again.. keep those prayers coming.. they're working.
love.
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