Hello,
We are back from Buffalo and everything went great. All of Rita's numbers were excellent so we are home until next Monday when Rita will have another biopsy. We plan on enjoying the time at home and I plan on keeping food in front of Rita. By the way, she gained another 4 pounds and is up to 124. I'll get her over 130 before course 3!!!
We hope that you all have a great New Year and that 2011 brings us to a cure for Rita and a healthy, happy and blessed time for all of us. We look very much to returning to our normal lives. Truthfully through, I don't thing our lives will ever be the same. This has touched us profoundly and I know that we will never take anything for granted ever again.
Happy New Year!! Dave & Rita.
Monday, December 27, 2010
Saturday, December 25, 2010
Day 150
Merry Christmas!!
Just wanted everyone to know that we have had a wonderful Christmas. We have spent precious time with our family and close friends and have enjoyed some great food. Rita has really enjoyed the food and conversations and has held up really well. We are now having some quiet time and resting up. We will be traveling back to Buffalo on Monday and hope to come back home the same day. I'll keep you posted on how Rita does on Monday and if there are any changes to the current plan. As I'm sure you all have become used to, we never know for sure what we will be doing next but, based on how Rita is feeling and acting, I'm confident that we will stay on this track for the next few weeks.
So, it has truly been a blessed Christmas and I thank all of you for helping to put us in this position. Your thoughts and prayers have been heard and answered and for that, we are thankful. Enjoy the rest of your holiday season and please remember Rita as we move into the new year. She will be facing even more difficult challenges and she will need for you to continue to support her with you prayers. We are now about halfway through this process. We have learned so much and believe that what we have learned will help us through the next half. We move forward into 2011 full of optimisim.
Talk to you soon, Dave & Rita
Just wanted everyone to know that we have had a wonderful Christmas. We have spent precious time with our family and close friends and have enjoyed some great food. Rita has really enjoyed the food and conversations and has held up really well. We are now having some quiet time and resting up. We will be traveling back to Buffalo on Monday and hope to come back home the same day. I'll keep you posted on how Rita does on Monday and if there are any changes to the current plan. As I'm sure you all have become used to, we never know for sure what we will be doing next but, based on how Rita is feeling and acting, I'm confident that we will stay on this track for the next few weeks.
So, it has truly been a blessed Christmas and I thank all of you for helping to put us in this position. Your thoughts and prayers have been heard and answered and for that, we are thankful. Enjoy the rest of your holiday season and please remember Rita as we move into the new year. She will be facing even more difficult challenges and she will need for you to continue to support her with you prayers. We are now about halfway through this process. We have learned so much and believe that what we have learned will help us through the next half. We move forward into 2011 full of optimisim.
Talk to you soon, Dave & Rita
Monday, December 20, 2010
Day 145
Hello,
We are back home after going out to Buffalo today. Rita's numbers were good but they decided to give her a blood transfusion so that she wouldn't have to go back on Thursday. That means we are home until next Monday. Things continue to look positive and we are hopeful that the rest of the treatment goes smoothly. We are really happy that Rita gets to spend the holidays at home and that she will get a chance to continue to get stronger. I'll keep putting the food in front of her and she will continue to get as much in as possible. She did gain one more pound over that last four days and I think that is pretty good because ahe has also increased her activity. I think she is putting herself in a good position for transplant.
Not much else to say at this time. We continue to be thankful for all of your prayers, cards, and thoughtful gestures. We are doing OK and trust that this process will result in a positive outcome. I don't know if I will get to blog before Christmas so, we wish all of you a Merry and Blessed Christmas. Enjoy your families and don't pass up the opportunity to tell each one of them how much you love them.
We love you, Dave & Rita.
We are back home after going out to Buffalo today. Rita's numbers were good but they decided to give her a blood transfusion so that she wouldn't have to go back on Thursday. That means we are home until next Monday. Things continue to look positive and we are hopeful that the rest of the treatment goes smoothly. We are really happy that Rita gets to spend the holidays at home and that she will get a chance to continue to get stronger. I'll keep putting the food in front of her and she will continue to get as much in as possible. She did gain one more pound over that last four days and I think that is pretty good because ahe has also increased her activity. I think she is putting herself in a good position for transplant.
Not much else to say at this time. We continue to be thankful for all of your prayers, cards, and thoughtful gestures. We are doing OK and trust that this process will result in a positive outcome. I don't know if I will get to blog before Christmas so, we wish all of you a Merry and Blessed Christmas. Enjoy your families and don't pass up the opportunity to tell each one of them how much you love them.
We love you, Dave & Rita.
Thursday, December 16, 2010
Day 141
Hello,
We are back home until next Monday. Good news!! The bone marrow biopsy results showed no sign of leukemia so Rita is still in remission!!! Also, her blood seems to be improving on its own so that is a good sign that her bone marrow is recovering. We will need to go back to Buffalo on Monday for lab work and if everything looks good, we can come home again for the rest of the week. If all this work out, we will be home for Christmas and New Years and then back to Buffalo on January 3rd for another bone marrow biopsy which will determine when Rita can start course 3. All in all, things are looking very positive.
Going to keep this short but I wanted to make sure you got the good news as soon as possible.
Take Care, Dave & Rita
We are back home until next Monday. Good news!! The bone marrow biopsy results showed no sign of leukemia so Rita is still in remission!!! Also, her blood seems to be improving on its own so that is a good sign that her bone marrow is recovering. We will need to go back to Buffalo on Monday for lab work and if everything looks good, we can come home again for the rest of the week. If all this work out, we will be home for Christmas and New Years and then back to Buffalo on January 3rd for another bone marrow biopsy which will determine when Rita can start course 3. All in all, things are looking very positive.
Going to keep this short but I wanted to make sure you got the good news as soon as possible.
Take Care, Dave & Rita
Tuesday, December 14, 2010
Dayt 139
Hello All,
Another good day out here in Buffalo. Rita took a "catch up on my rest" day and I got quite a bit of work doine. We didn't go out today as the snow was pretty heavy and we really didn't need to. Our next visit to the clinic is Thrusday and we hope to go home right after we are done there. I keep putting food in front of Rita and she does her best to get it down. We hope that by the time we get back to the clinic on Thursday that her weight picks up some.
We just got through walking the halls at the hotel. The most Rita had done before was 5 times around the floor we are on and tonight she did 9 times around!! Thats progress!! You would all be proud of her to see the way she is fighting this thing. Of course, its probably my cooking that is giving her the energy she needs to do it.
Well, OK just a short note tonight. We are waiting for the results on Thursday and then we'll let you all know where we are in the process.
Goodnight, Dave & Rita
Another good day out here in Buffalo. Rita took a "catch up on my rest" day and I got quite a bit of work doine. We didn't go out today as the snow was pretty heavy and we really didn't need to. Our next visit to the clinic is Thrusday and we hope to go home right after we are done there. I keep putting food in front of Rita and she does her best to get it down. We hope that by the time we get back to the clinic on Thursday that her weight picks up some.
We just got through walking the halls at the hotel. The most Rita had done before was 5 times around the floor we are on and tonight she did 9 times around!! Thats progress!! You would all be proud of her to see the way she is fighting this thing. Of course, its probably my cooking that is giving her the energy she needs to do it.
Well, OK just a short note tonight. We are waiting for the results on Thursday and then we'll let you all know where we are in the process.
Goodnight, Dave & Rita
Monday, December 13, 2010
Day 138
Hello,
We had a pretty good day today. Rita's bone marrow biopsy went well - we will probably get the results on Thursday. Her numbers were pretty good today which we are taking as a good sign. Dr. Wetzler told Rita that he is not going to start her on course 3 for at least three weeks. They will do another bone marrow biopsy on January 3, 2011 - three weeks from today. That will determine when she can start course 3. While this delays the process by about a month, it does mean that Rita will be able to be home for Christmas and New Years. She is really happy about that. We think we will be able to come home Thursday and then maybe back here next Monday. We are currently on twice a week in the clinic (Mondays and Thursdays) but, if her numbers get good enough, they may change that to just once a week for a few weeks. We'll see how that develops. At the least, we should be able to get home every Thursday through Monday (or Sunday depending on the weather) until they start course 3.
Rita continues to get stronger - she did the tunnel walk and stairs after the bone marrow biopsy today and felt good all the way. We do need to get some meat on her bones so we will be working on that a little more vigorously. She will be getting whole milk and cupcakes and anything else she can get get down. She seems determined to get this weight thing under control.
Enough for now - we'll be sure to let you know when we get her results.
Dave.
We had a pretty good day today. Rita's bone marrow biopsy went well - we will probably get the results on Thursday. Her numbers were pretty good today which we are taking as a good sign. Dr. Wetzler told Rita that he is not going to start her on course 3 for at least three weeks. They will do another bone marrow biopsy on January 3, 2011 - three weeks from today. That will determine when she can start course 3. While this delays the process by about a month, it does mean that Rita will be able to be home for Christmas and New Years. She is really happy about that. We think we will be able to come home Thursday and then maybe back here next Monday. We are currently on twice a week in the clinic (Mondays and Thursdays) but, if her numbers get good enough, they may change that to just once a week for a few weeks. We'll see how that develops. At the least, we should be able to get home every Thursday through Monday (or Sunday depending on the weather) until they start course 3.
Rita continues to get stronger - she did the tunnel walk and stairs after the bone marrow biopsy today and felt good all the way. We do need to get some meat on her bones so we will be working on that a little more vigorously. She will be getting whole milk and cupcakes and anything else she can get get down. She seems determined to get this weight thing under control.
Enough for now - we'll be sure to let you know when we get her results.
Dave.
Sunday, December 12, 2010
Day 137
Hi Folks,
Sorry for the absence in posting to the blog. We were able to go home for a few days and it was pretty busy. We are back in Buffalo now as we decided to come back a little early to beat the weather. Tomorrow Rita will have another bone marrow biopsy to try to see why her numbers haven't come back the way they should. We will probably get the results on Tuesday and then know where we go from here. We are hoping that we can get started on course three - the last one before the stem cell transplant. Course 3 will be 28 days and then, once Rita has recovered from that, its the final step in this long process. We are both a little nervous about that but want to get on with it.
There is not much news to report. Rita is feeling pretty good and has maintained her strength so we take that as a good sign. I'll be sure to post as soon as we have the information from her biopsy.
Have a good evening, Dave.
Sorry for the absence in posting to the blog. We were able to go home for a few days and it was pretty busy. We are back in Buffalo now as we decided to come back a little early to beat the weather. Tomorrow Rita will have another bone marrow biopsy to try to see why her numbers haven't come back the way they should. We will probably get the results on Tuesday and then know where we go from here. We are hoping that we can get started on course three - the last one before the stem cell transplant. Course 3 will be 28 days and then, once Rita has recovered from that, its the final step in this long process. We are both a little nervous about that but want to get on with it.
There is not much news to report. Rita is feeling pretty good and has maintained her strength so we take that as a good sign. I'll be sure to post as soon as we have the information from her biopsy.
Have a good evening, Dave.
Monday, December 6, 2010
Day 131
Hello All,
The clinic appointment went well today. Rita's numbers have recovered nicely thanks to the growth factor shots she has been getting. We were hoping to come home today but decided not to risk it with the weather we have been having. Rita is being taken off all of her antibiotics and the growth factor shots so we thought it would be best to stay until Thursday to make sure that she is stable. We are doing good and will make that decision on Thursday. Hopefully, we can get home for the weekend and then back here on Monday. Everything is day to day. We just need to stay flexible and adjust accordingly. Today, after the clinic, we walked back to the hotel through the tunnel from the clinic. This is about a 5 -10 minute walk which Rita handled with no problem. At the end of the tunnel walk, there are a set of stairs - maybe 15 -18 steps or, you can take a little elevator up to the hotel lobby level. Well, Rita dosen't really like the little elevator thing so, she just started up the stairs. She made it all the way up and hardley got tired through the process!! Also, she gained another pound today - thanks to mine and Lisa's cooking.
So, things are going pretty well. We are both anxious to get home but know we need to error on the side of making sure Rita is in a place where she can get help if needed. If we are able to get home, we will probably celebrate Christmas a little early because Rita will be in the process of course 3 at Christmas time and will not be able to be home for Christmas. I'll make sure we have enough Christmas spirit out here and we'll make the best of the situation. Its all of the future Christmases that are really important anyway.
OK - Goodnight - Love, Dave & Rita.
The clinic appointment went well today. Rita's numbers have recovered nicely thanks to the growth factor shots she has been getting. We were hoping to come home today but decided not to risk it with the weather we have been having. Rita is being taken off all of her antibiotics and the growth factor shots so we thought it would be best to stay until Thursday to make sure that she is stable. We are doing good and will make that decision on Thursday. Hopefully, we can get home for the weekend and then back here on Monday. Everything is day to day. We just need to stay flexible and adjust accordingly. Today, after the clinic, we walked back to the hotel through the tunnel from the clinic. This is about a 5 -10 minute walk which Rita handled with no problem. At the end of the tunnel walk, there are a set of stairs - maybe 15 -18 steps or, you can take a little elevator up to the hotel lobby level. Well, Rita dosen't really like the little elevator thing so, she just started up the stairs. She made it all the way up and hardley got tired through the process!! Also, she gained another pound today - thanks to mine and Lisa's cooking.
So, things are going pretty well. We are both anxious to get home but know we need to error on the side of making sure Rita is in a place where she can get help if needed. If we are able to get home, we will probably celebrate Christmas a little early because Rita will be in the process of course 3 at Christmas time and will not be able to be home for Christmas. I'll make sure we have enough Christmas spirit out here and we'll make the best of the situation. Its all of the future Christmases that are really important anyway.
OK - Goodnight - Love, Dave & Rita.
Saturday, December 4, 2010
day 129
hi everyone! i'm here with mom and dad....it feels so good to be back! we just finished up dinner... made scalloped potatoes and ham.. seemed pretty good, mom ate a whole bowl full. she's pretty skinny, so i'm hoping to fatten her up while i'm here..
i came out with some presents that mom loved.. new flannel pj's! a couple pair from ellen and kelly, a beautifully warm fleece sweater from patricia and a pair of red microfleece pj's from me.. warm, fuzzy.. exactly what mom loves. she's in ellen's pj's now.. loving them. they came out of the dryer and were immediately put on.. she looks beautiful in them..
mom's doing really well now that she's back in the hotel room.. she's sleeping well.. eating better and feeling better too. it's her little home away from home..
she has a clinic appointment monday, we hope that the growth factor shots she's been getting are working and she'll get to come home for a few days to rest.. we'll see soon..
it's amazing how mobile mom is.. she's walking with out her walker.. and i know dad already said that.. but now i believe it... she's actually walking around, getting up.. everything with out her walker.. without any help. pretty cool..
there's not much to report on.. just resting and relaxing.. feels good.
thank you for continuing to read, care and pray for us....
love.
i came out with some presents that mom loved.. new flannel pj's! a couple pair from ellen and kelly, a beautifully warm fleece sweater from patricia and a pair of red microfleece pj's from me.. warm, fuzzy.. exactly what mom loves. she's in ellen's pj's now.. loving them. they came out of the dryer and were immediately put on.. she looks beautiful in them..
mom's doing really well now that she's back in the hotel room.. she's sleeping well.. eating better and feeling better too. it's her little home away from home..
she has a clinic appointment monday, we hope that the growth factor shots she's been getting are working and she'll get to come home for a few days to rest.. we'll see soon..
it's amazing how mobile mom is.. she's walking with out her walker.. and i know dad already said that.. but now i believe it... she's actually walking around, getting up.. everything with out her walker.. without any help. pretty cool..
there's not much to report on.. just resting and relaxing.. feels good.
thank you for continuing to read, care and pray for us....
love.
Wednesday, December 1, 2010
Day 126
Hello,
Well, it has been a little tense the last few days. Rita's numbers did not come back like we had hoped. That made us a little concerned about her bone marrow biopsy. We were praying that her bone marrow results were favorable and that the cause of her numbers staying low was not a relaps of her disease. We found out today that we were right. Her biopsy results were good. No relapse!! It just seems that it will take her a little longer to recover from all of the chemo that they have given her. They started her on a growth factor shot today and I will continue to give it to her until her bone marrow starts to produce the healthy infection fighting cells that she needs. This could be a few days to a few weeks. She will be tested every couple of days to see where she stands.
Rita was discharged this afternoon so we are back in the hotel room. I can't tell you how good this feels for both of us. Its not home but, its not the hospital either. One of the hard things at the hospital was the food. I don't want to brag but, tonight I made Rita spaghetti with meatballs and sausage. I must say that it was very good. Rita seemed to enjoy it and I hope that it will be the beginning of her eating better and putting on some weight. Her strength is much better and she no longer is using the walker to get around. Now, we need to fatten her up a bit so I'll be working on that.
So, the plan is that we will be going to the clinic every couple of days until her bone marrow recovers and then, we hope to go home for a respite before she starts course three. We are getting ever closer to transplant. For me, its like struggling through a subject all year long and knowing that you have one opportunity for success and that is to pass the final. Its a good thing that Rita is taking the test because she has always passed and has even helped a few of us get by with her. I'm sure some of you know what I'm talking about.
So, to summarize - Rita is still in remission - we are back in our hotel room - Rita is getting a growth factor to help her bone marrrow recover - she is getting antibiotics to keep infections away - she will be tested every couple of days to make sure her blood stays in acceptable parameters and will get blood products if necessary - we hope to come home when her marrow recovers to the point that she doesn't need transfusions or supplements - course three will start when she has recovered enough to handle the new chemo. We are getting closer to transplant - that is the ultimate test. I know she will get through that like she has all of this so far.
I know I am rambling a bit but this past two weeks has been difficult. When we went to the hospital with the fever, we thought it would be a couple of days at the most. Now, over two weeks later we have learned that nothing is predictable with this disease. We need to be flexible and adjust to whatever is handed to us. So far, I think we are doing a pretty good job at that. Hum, I wonder if all of your prayers have anything to do with that. We all know the answer. Thanks Folks!!
OK - Goodnight, Dave & Rita
Well, it has been a little tense the last few days. Rita's numbers did not come back like we had hoped. That made us a little concerned about her bone marrow biopsy. We were praying that her bone marrow results were favorable and that the cause of her numbers staying low was not a relaps of her disease. We found out today that we were right. Her biopsy results were good. No relapse!! It just seems that it will take her a little longer to recover from all of the chemo that they have given her. They started her on a growth factor shot today and I will continue to give it to her until her bone marrow starts to produce the healthy infection fighting cells that she needs. This could be a few days to a few weeks. She will be tested every couple of days to see where she stands.
Rita was discharged this afternoon so we are back in the hotel room. I can't tell you how good this feels for both of us. Its not home but, its not the hospital either. One of the hard things at the hospital was the food. I don't want to brag but, tonight I made Rita spaghetti with meatballs and sausage. I must say that it was very good. Rita seemed to enjoy it and I hope that it will be the beginning of her eating better and putting on some weight. Her strength is much better and she no longer is using the walker to get around. Now, we need to fatten her up a bit so I'll be working on that.
So, the plan is that we will be going to the clinic every couple of days until her bone marrow recovers and then, we hope to go home for a respite before she starts course three. We are getting ever closer to transplant. For me, its like struggling through a subject all year long and knowing that you have one opportunity for success and that is to pass the final. Its a good thing that Rita is taking the test because she has always passed and has even helped a few of us get by with her. I'm sure some of you know what I'm talking about.
So, to summarize - Rita is still in remission - we are back in our hotel room - Rita is getting a growth factor to help her bone marrrow recover - she is getting antibiotics to keep infections away - she will be tested every couple of days to make sure her blood stays in acceptable parameters and will get blood products if necessary - we hope to come home when her marrow recovers to the point that she doesn't need transfusions or supplements - course three will start when she has recovered enough to handle the new chemo. We are getting closer to transplant - that is the ultimate test. I know she will get through that like she has all of this so far.
I know I am rambling a bit but this past two weeks has been difficult. When we went to the hospital with the fever, we thought it would be a couple of days at the most. Now, over two weeks later we have learned that nothing is predictable with this disease. We need to be flexible and adjust to whatever is handed to us. So far, I think we are doing a pretty good job at that. Hum, I wonder if all of your prayers have anything to do with that. We all know the answer. Thanks Folks!!
OK - Goodnight, Dave & Rita
Monday, November 29, 2010
Day 124 (Course 2B 29)
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.
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.
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.
Thursday, October 28, 2010
OMG
Ok, you'll never believe it... Yes, that's really Sunny Anderson that posted on mom's blog.. I found her website by clicking on her picture, and posted a comment on her blog.. she got back to us! We are so excited!!!!!
Here is my comment and her response. (I hope I'm allowed to copy this from her site!)
Lisa said...
Hi Sunny! My mom (rita), sister (amy) and I love your shows! Thank you for posting on my mom's blog... she's been diagnosed with Leukemia and is living away from home in a hotel conected to Roswell Park Cancer Institute in Buffalo, NY. When not at the hospital having procedures done or praying for good news, we are watching the Food Network. Mom just loves your energy, your recipes and shares the love you have for cooking. We hope to make some of your recipes when she's done with treatment in June! You have made my mom's year by posting on her blog! Thank you... I'm sure she'll be able to work a little bit harder today!
love. Lovely Rita, Amy and Lisa
Sunny Anderson said...
lisa, thanks for watching. it was a joy to see the smiles and happiness on your blog despite the circumstances. i just knew i had to post, you seem like my kind of people. please pass a big hug to rita. tell her watching my show while on the treadmill is all the rage and if she can do 30 minutes, she's a rock star! i usually start to struggle around the 25-minute mark :-). thanks so much for watching and blogging about it, it allows me to find you and invite you over to "my place" for some fun :-). take care a big huuuuge well wishes to rita!
You can find Sunny's blog by clicking on her picture from last posts comments.
More good news... last weekend while Sherry, Eva and I were visiting, we saw a ladybug on the outside of our window.. must have been gram visiting.. yesterday when I took sanchnloo out, loo was sniffing and scratching at the welcome mat and when i checked it out... there was a giant ladybug... loo was telling me! Then, when dad got to the hotel yesterday there was a ladybug in the bedroom! Finally, today at school.. a kid came back from the bathroom and said... uh.. there's a girl dressed up as a ladybug standing outside your door... I got up and saw that an older student was dressed up as a ladybug for her BOCES class today! HA!
They were all signs.. today mom went to her clinic appointment to meet with Dr. Wetzler and he said she was doing great, didn't have to continue on her antibiotics which made mom happy because they were HUGE pills...... then.. he said someone gave them the wrong paper to explain course 3, and it's not 70 days.. it's only 28!! Mom was even happier! Best news yet, mom asked if she could go home for a few days since her next appointment isn't until monday.. he said YES!!!! So she's currently on her way home.. for a very short visit, but none the less.. she'll be home! Thank you ladybugs. My heart is smiling so big right now.
that's it for now.
love.
Here is my comment and her response. (I hope I'm allowed to copy this from her site!)
Lisa said...
Hi Sunny! My mom (rita), sister (amy) and I love your shows! Thank you for posting on my mom's blog... she's been diagnosed with Leukemia and is living away from home in a hotel conected to Roswell Park Cancer Institute in Buffalo, NY. When not at the hospital having procedures done or praying for good news, we are watching the Food Network. Mom just loves your energy, your recipes and shares the love you have for cooking. We hope to make some of your recipes when she's done with treatment in June! You have made my mom's year by posting on her blog! Thank you... I'm sure she'll be able to work a little bit harder today!
love. Lovely Rita, Amy and Lisa
Sunny Anderson said...
lisa, thanks for watching. it was a joy to see the smiles and happiness on your blog despite the circumstances. i just knew i had to post, you seem like my kind of people. please pass a big hug to rita. tell her watching my show while on the treadmill is all the rage and if she can do 30 minutes, she's a rock star! i usually start to struggle around the 25-minute mark :-). thanks so much for watching and blogging about it, it allows me to find you and invite you over to "my place" for some fun :-). take care a big huuuuge well wishes to rita!
You can find Sunny's blog by clicking on her picture from last posts comments.
More good news... last weekend while Sherry, Eva and I were visiting, we saw a ladybug on the outside of our window.. must have been gram visiting.. yesterday when I took sanchnloo out, loo was sniffing and scratching at the welcome mat and when i checked it out... there was a giant ladybug... loo was telling me! Then, when dad got to the hotel yesterday there was a ladybug in the bedroom! Finally, today at school.. a kid came back from the bathroom and said... uh.. there's a girl dressed up as a ladybug standing outside your door... I got up and saw that an older student was dressed up as a ladybug for her BOCES class today! HA!
They were all signs.. today mom went to her clinic appointment to meet with Dr. Wetzler and he said she was doing great, didn't have to continue on her antibiotics which made mom happy because they were HUGE pills...... then.. he said someone gave them the wrong paper to explain course 3, and it's not 70 days.. it's only 28!! Mom was even happier! Best news yet, mom asked if she could go home for a few days since her next appointment isn't until monday.. he said YES!!!! So she's currently on her way home.. for a very short visit, but none the less.. she'll be home! Thank you ladybugs. My heart is smiling so big right now.
that's it for now.
love.
Tuesday, October 26, 2010
Day 90 (Course 2 Day 36)
Hello Everyone,
Things are going ok out here. We're settled into a pretty good routine and thankfully all of the jackhammering has finished for now. I'm sure it will be back to bother us more later but we're happy for the break now.
The second half of Mom's Course 2 got delayed a little bit due to some minor changes and her main Doctor being out of town. This is no big deal and we have learned to be flexible so we're just taking this time to try and get the minor stuff handled (which seems to be just as important as the major stuff). Mom's been trying to drink a lot of water, eat well and she is trying to exercise a little bit each day. We had a little scare earlier when she toppled over while looking for something in the fridge. Fortunately, she was already bent down almost to the ground and she didn't get hurt at all. What we did realize, however, was that she has very little strength in her legs to help her get back up. That proved to be quite a process but through a little patience and some creative thinking we were able to get her up and she was good as new. She's going to keep working on getting her strength back and hopefully these things will get easier for her.
Today she did 14 minutes on the bicycle in the gym downstairs while watching Sunny Anderson on Food TV. She just wheeled away until Giada came on and started making something gross. Then she realized she was working out and decided it was enough. She did a great job though - I was really proud of her. She even did a few exercises with a little 2 lb medicine ball.
I'll be with Mom through tomorrow and then Dad will be here for her appointment on Thursday. She'll hopefully have an easy day and have a nice relaxing weekend. We'll keep you all updated.
Thanks,
Amy
Things are going ok out here. We're settled into a pretty good routine and thankfully all of the jackhammering has finished for now. I'm sure it will be back to bother us more later but we're happy for the break now.
The second half of Mom's Course 2 got delayed a little bit due to some minor changes and her main Doctor being out of town. This is no big deal and we have learned to be flexible so we're just taking this time to try and get the minor stuff handled (which seems to be just as important as the major stuff). Mom's been trying to drink a lot of water, eat well and she is trying to exercise a little bit each day. We had a little scare earlier when she toppled over while looking for something in the fridge. Fortunately, she was already bent down almost to the ground and she didn't get hurt at all. What we did realize, however, was that she has very little strength in her legs to help her get back up. That proved to be quite a process but through a little patience and some creative thinking we were able to get her up and she was good as new. She's going to keep working on getting her strength back and hopefully these things will get easier for her.
Today she did 14 minutes on the bicycle in the gym downstairs while watching Sunny Anderson on Food TV. She just wheeled away until Giada came on and started making something gross. Then she realized she was working out and decided it was enough. She did a great job though - I was really proud of her. She even did a few exercises with a little 2 lb medicine ball.
I'll be with Mom through tomorrow and then Dad will be here for her appointment on Thursday. She'll hopefully have an easy day and have a nice relaxing weekend. We'll keep you all updated.
Thanks,
Amy
Saturday, October 23, 2010
Day 87 (Course 2 Day 33)
we had a great day today.. and really, are having a great weekend! we had a little birthday party for mom and sherry with some delicious sour cream coffee cake for breakfast.. candles and all, luckily instead of putting close to 115 candles, we opted for 2... we are trying not to get kicked out when we have so many days left to live here! at first, we didn't even think we were going to able to light the candles... but sherry pulled out a little MacGyver bag and found some flint and steel wool.. no just kidding.. she had matches... anyways.. the birthday party was fun and we enjoyed the cake!
I had to give the lovenox shot today.. i was worried at first, but it came right back to me and i didn't even hurt mom! that was a bonus!
We solved more of the worlds problems.. laughed a lot.. played a joke on dad (we told him mom picked wig #1, and he sounded soooo disappointed, while trying to be supportive) and just caught up on life. It was a great day for all of us and mom seemed so happy.
The girls left around 2:30 to go shopping and dad arrived shortly after... he thinks mom looks even better today than yesterday!
we cooked an excellent dinner... pot roast with potatoes and carrots and some fresh baked rolls.. we had 1 pot, a few ingredients, some beef broth from the kitchen downstairs, and made a great tasting dinner.. mom said it might and been the best ever... I think she's just getting her appetite back finally because everything has been tasting pretty good these past two days.. maybe it's just my touch!!
we've done a few laps in the hall.. mom can walk without her walker if she holds dad's hand.. she's getting stronger and stronger each day. We're definitely moving in the right direction.
It feels so good to be out here.. i love seeing mom getting stronger and better..
ok, i've babbled enough for the evening.. she sends her love and thanks all of you for thinking of her and sending your love and prayers.
love.
I had to give the lovenox shot today.. i was worried at first, but it came right back to me and i didn't even hurt mom! that was a bonus!
We solved more of the worlds problems.. laughed a lot.. played a joke on dad (we told him mom picked wig #1, and he sounded soooo disappointed, while trying to be supportive) and just caught up on life. It was a great day for all of us and mom seemed so happy.
The girls left around 2:30 to go shopping and dad arrived shortly after... he thinks mom looks even better today than yesterday!
we cooked an excellent dinner... pot roast with potatoes and carrots and some fresh baked rolls.. we had 1 pot, a few ingredients, some beef broth from the kitchen downstairs, and made a great tasting dinner.. mom said it might and been the best ever... I think she's just getting her appetite back finally because everything has been tasting pretty good these past two days.. maybe it's just my touch!!
we've done a few laps in the hall.. mom can walk without her walker if she holds dad's hand.. she's getting stronger and stronger each day. We're definitely moving in the right direction.
It feels so good to be out here.. i love seeing mom getting stronger and better..
ok, i've babbled enough for the evening.. she sends her love and thanks all of you for thinking of her and sending your love and prayers.
love.
Friday, October 22, 2010
Day 86 (Course 2 Day 32)
he everyone! i'm here with mom, aunt sherry and aunt eva, we are having a great time eating,chatting and solving the worlds problems!! we all got here early afternoon and went to the wig store.. let me tell you.. that was fun!!! here are some pics... which one do you think is the best?
We have had quite a feast out here... shrimp cocktail, spinach phyllo triangles, cheese and crackers... golumpki and apple pie.. oh and mom had several doses of potASSium... so for most of us, the eating experience was great!! for mom.. pretty good, but she can't wait to get rid of that potASSium some day!
it has been a great night. we're all pretty tired, and are looking forward to an restful night and a morning full or more snacks (sour cream coffee cake) and more.. oh and we're waiting for Doc Oc to start real early.. we're wondering if we should harness Sherry's kiddie skills and make some colorful posters for the window's beggin the construction workers to have an extra long coffee break in the morning! we'll see...
Thank you so much for your love, prayers, comments and cards. Mom is always so happy to hear from everyone.
will write more tomorrow...
love.
ok... so maybe none of these pics do mom justice, but we did pick one... and once aunt sue get's a hold of it, it will be beautiful!!
We have had quite a feast out here... shrimp cocktail, spinach phyllo triangles, cheese and crackers... golumpki and apple pie.. oh and mom had several doses of potASSium... so for most of us, the eating experience was great!! for mom.. pretty good, but she can't wait to get rid of that potASSium some day!
it has been a great night. we're all pretty tired, and are looking forward to an restful night and a morning full or more snacks (sour cream coffee cake) and more.. oh and we're waiting for Doc Oc to start real early.. we're wondering if we should harness Sherry's kiddie skills and make some colorful posters for the window's beggin the construction workers to have an extra long coffee break in the morning! we'll see...
Thank you so much for your love, prayers, comments and cards. Mom is always so happy to hear from everyone.
will write more tomorrow...
love.
Thursday, October 21, 2010
Day 85 (Course 2 Day 31)
Hello,
Well, today was interesting. Rita is doing well and getting stronger. She is so looking forward to her sisters and Lisa coming out for an overnight "girls night". Of coiurse, I will be sent home for the night. Rita's numbers were good today so we got to discontinue two pills and her and her nightly IV hook-up. She is really happy about that!! Rita had her central line discontinued today because it appeared to be a little dislodged. Thats OK because they will now put in a PICC line which will be in her arm and will be easier to maintain. They will do that Monday. All in all, we are in a good place right now. We did get some new info on course three. We had been under the impression that course three would last for 46 days. We found out toay that course three will be 70 days. That is a little disappointing because this seems like such a long process already. This information takes us well into June 2011 so it looks like we will be were a little longer. Whatever - as long as the outcome is positive. It always seems that we get a liitle bit of encouraging news which is immediately followed up by an additional challange. I guess that is just the nature of the beast. We remain determined to slay the beast and that is what we will do.
Hope this finds you all well. All of you are so supportive and we feel your prayers and love. Believe me, it is reflected back to you. When Rita is curred and we are back home, there will be one hell of a party.
OK enough - Love Dave.
Well, today was interesting. Rita is doing well and getting stronger. She is so looking forward to her sisters and Lisa coming out for an overnight "girls night". Of coiurse, I will be sent home for the night. Rita's numbers were good today so we got to discontinue two pills and her and her nightly IV hook-up. She is really happy about that!! Rita had her central line discontinued today because it appeared to be a little dislodged. Thats OK because they will now put in a PICC line which will be in her arm and will be easier to maintain. They will do that Monday. All in all, we are in a good place right now. We did get some new info on course three. We had been under the impression that course three would last for 46 days. We found out toay that course three will be 70 days. That is a little disappointing because this seems like such a long process already. This information takes us well into June 2011 so it looks like we will be were a little longer. Whatever - as long as the outcome is positive. It always seems that we get a liitle bit of encouraging news which is immediately followed up by an additional challange. I guess that is just the nature of the beast. We remain determined to slay the beast and that is what we will do.
Hope this finds you all well. All of you are so supportive and we feel your prayers and love. Believe me, it is reflected back to you. When Rita is curred and we are back home, there will be one hell of a party.
OK enough - Love Dave.
Wednesday, October 20, 2010
Day 84 (Course 2 Day 30)
Hi Everyone,
Not much to update today. The construction across the street has definitely added an interesting element to the process. It should be ending soon for the evening and we'll have some peace and quiet.
Mom's feeling a little better today than she was yesterday. We didn't do much. We went for a walk to get lunch in the cafe downstairs and Mom caught up on some of her papers. She looks like she might doze off for a bit here now.
She has a clinic appointment tomorrow but won't be receiving any Chemo. Hopefully each day will continue to get better and give her a little break until she starts Course 2B.
That's all for now. Mom hopes you are all well.
Love,
Amy
Not much to update today. The construction across the street has definitely added an interesting element to the process. It should be ending soon for the evening and we'll have some peace and quiet.
Mom's feeling a little better today than she was yesterday. We didn't do much. We went for a walk to get lunch in the cafe downstairs and Mom caught up on some of her papers. She looks like she might doze off for a bit here now.
She has a clinic appointment tomorrow but won't be receiving any Chemo. Hopefully each day will continue to get better and give her a little break until she starts Course 2B.
That's all for now. Mom hopes you are all well.
Love,
Amy
Tuesday, October 19, 2010
Day 83 (Stage 2 Day 29)
Hi everyone. It's been a long since we last posted. Dave was here most of the time and we were busy alot. I am finished with course 1 of part 2 of this chemo. I will start the 2nd half in about 10 days. That should give me a lot of time to rest. I felt like crap all week and my numbers were really down. I tried to get alot of rest. I have been walking the halls several times a day. Amy is out here with me now. This Friday, Sherry, Eva, and Lisa are coming out to spend the night Dave will go home on Fri night to let us be alone. Well, I got the news that not one of my siblings was a match. It is quite surprising since originally they said i had a 90% chance of a match, I want to thank my brothers and sisters for their effort in giving of their blood and making sure it got here. Jennifer from the lab says there are so many banks out there and she looked quickly and thought she saw some potential matches. That won't happen till maybe March so there is plenty of time. Well, getting tires and am heading off to bed. Thanks for all the cards and many prayers. It is overwhelming. Love to all, Rita
Thursday, October 14, 2010
Day 79 (24 in Course 2)
Hi Folks,
Sorry its been awhile agian. Nothing much new to report. Rita is doing well and she is continuing to walk the hallways without her walker. I think she gets a little stronger each day. Naturally, she has ups and downs but, overall, I feel we are going in the right direction. We have the clinic in the morning and Rita will get her last dose of chemo for this stage - that is the first half of course 2. I think she will get a little break from the chemo and we are hoping her numbers come up so that she in not neutropenic for a little while. We'll see. We have an appointment with Dr. Wetzler next Thursday (10/21) so we should get a status report on how she is doing then. She is hoping that her numbers are up because the girls (Sherry, Eva and Lisa) are planning to come out for a sleep over next Friday. It will all depend on her numbers but Rita is really looking forward to their visit.
That's it for now, Dave
Sorry its been awhile agian. Nothing much new to report. Rita is doing well and she is continuing to walk the hallways without her walker. I think she gets a little stronger each day. Naturally, she has ups and downs but, overall, I feel we are going in the right direction. We have the clinic in the morning and Rita will get her last dose of chemo for this stage - that is the first half of course 2. I think she will get a little break from the chemo and we are hoping her numbers come up so that she in not neutropenic for a little while. We'll see. We have an appointment with Dr. Wetzler next Thursday (10/21) so we should get a status report on how she is doing then. She is hoping that her numbers are up because the girls (Sherry, Eva and Lisa) are planning to come out for a sleep over next Friday. It will all depend on her numbers but Rita is really looking forward to their visit.
That's it for now, Dave
Wednesday, October 13, 2010
Happy birthday Mom!
We all hope you have a wonderful day full of rest, healing and happniess.
love you to the moon and back and more than all the raindrops!
love you to the moon and back and more than all the raindrops!
Monday, October 11, 2010
Day 76 (Day 21 Course 2)
Well, today was a pretty good day. Things are going well and Rita even walked the hallway of the hotel without her walker!! This is a pretty big step and we hope to be able to build on it as the days go by. We have the clinic in the morning and we'll see how her numbers are and if she needs any blood products. Rita is scheduled to get two types of chemo at the clinic tomorrow as long as her numbers are OK. Hopefully, it will go smoothly and we can get out of the clinic by early afternoon. We'll see.
Have a good evening and we'll post more soon.
Dave.
Have a good evening and we'll post more soon.
Dave.
Saturday, October 9, 2010
Day 74 (Day 19 Course 2)
Hello,
Today was another good day out here in Buffalo. We did have to go to the clinic because two of Rita's ports were glogged up and they would not flush this morning. That didn't take too long and Rita wanted to go to Walgreens afterward. So, off we went and found one just around the corner from our hotel. Rita wore her mask and walked around the store like she owned the place. It was good for her and we got some supplies that we nneded. The rest of the day has been nice and quiet with some rest and pills and IV and more rest. We are going for a walk down the hallway soon to finish up the exercise for the day. Our goal for tomorrow is to take a ride out to Niagara Falls. It is supposed to be nice so I hope it works out. It is good to see Rita be able to enjoy some normal activites as she continues through this difficult process. The hard work that Amy did this past week is really paying off as Rita is getting more fluids and is getting stronger each day. All in all, I feel things are getting better - I feel much better being out here with Rita.
That's it for today. Hope you all are well - we are doing good out here. Dave
Today was another good day out here in Buffalo. We did have to go to the clinic because two of Rita's ports were glogged up and they would not flush this morning. That didn't take too long and Rita wanted to go to Walgreens afterward. So, off we went and found one just around the corner from our hotel. Rita wore her mask and walked around the store like she owned the place. It was good for her and we got some supplies that we nneded. The rest of the day has been nice and quiet with some rest and pills and IV and more rest. We are going for a walk down the hallway soon to finish up the exercise for the day. Our goal for tomorrow is to take a ride out to Niagara Falls. It is supposed to be nice so I hope it works out. It is good to see Rita be able to enjoy some normal activites as she continues through this difficult process. The hard work that Amy did this past week is really paying off as Rita is getting more fluids and is getting stronger each day. All in all, I feel things are getting better - I feel much better being out here with Rita.
That's it for today. Hope you all are well - we are doing good out here. Dave
Friday, October 8, 2010
Day 73 (Day 18 Course 2)
Hi Folks,
Sorry it has been awhile since we've updated the blog. I am here with Rita and today we spent several hours at the clinic. Rita needed platelets before she could get her chemo and then she had to have a blood transfusion after the chemo. All this is normal and to be expected. Overall, Rita is doing good. She seems to be getting a little stronger and is doing much better at keeping her fluids up. Her liver numbers actually improved today as compared to Tuesday. That's really important as all of the chemo is processed through her liver and we need that to be in good condition. We are looking forward to a good weekend together - maybe even a ride out to Niagara Falls. Rita sends her love and wishes to thank everyone that participated in the golf tournament. She heard the food was great and the door prizes were also. Our words could never express our gratitude for all of our friends and family. We feel truly blessed.
That's it for now, Dave
Sorry it has been awhile since we've updated the blog. I am here with Rita and today we spent several hours at the clinic. Rita needed platelets before she could get her chemo and then she had to have a blood transfusion after the chemo. All this is normal and to be expected. Overall, Rita is doing good. She seems to be getting a little stronger and is doing much better at keeping her fluids up. Her liver numbers actually improved today as compared to Tuesday. That's really important as all of the chemo is processed through her liver and we need that to be in good condition. We are looking forward to a good weekend together - maybe even a ride out to Niagara Falls. Rita sends her love and wishes to thank everyone that participated in the golf tournament. She heard the food was great and the door prizes were also. Our words could never express our gratitude for all of our friends and family. We feel truly blessed.
That's it for now, Dave
Tuesday, October 5, 2010
Day 70 (Course 2 Day 15)
Well, today was not the best day. Mom was pretty weak and things just did not seem to go our way. We got to the clinic at 8am for blood work and by 11am still did not have much information. Mom needed a platelet transfusion before they could administer the chemo, then she had the chemo and then she had to have more transfusion. It was a long day and we finally busted out of there around 4pm.
The numbers from her blood work were pretty much what we expected. It seems so much has been put into this but it's becoming more clear that there's a lot more hard work that needs to be done. Mom's goal is to get off of the walker and be able to start being more self sufficient. This is going to be really critical when it comes time to do the Bone Marrow Transplant.
When we got back to the room I had to hook Mom right back up to our IV pole in here and get her going on her antibiotics. I made some homemade chicken noodle soup on our little hot plate. Mom's got all of her pills down and is ready to turn in to bed early after this not so special day. We are both looking forward to a good night's sleep. We hope you all have one as well.
Love,
Amy
The numbers from her blood work were pretty much what we expected. It seems so much has been put into this but it's becoming more clear that there's a lot more hard work that needs to be done. Mom's goal is to get off of the walker and be able to start being more self sufficient. This is going to be really critical when it comes time to do the Bone Marrow Transplant.
When we got back to the room I had to hook Mom right back up to our IV pole in here and get her going on her antibiotics. I made some homemade chicken noodle soup on our little hot plate. Mom's got all of her pills down and is ready to turn in to bed early after this not so special day. We are both looking forward to a good night's sleep. We hope you all have one as well.
Love,
Amy
Monday, October 4, 2010
Day 69 (Course 2 Day 14)
Well, today was an interesting day. It began just as any other regular day would... at 6am with a series of loud bangs and a shaking sensation. Not only are we learning tips required for the nursing profession, but tips required for the demolition of a building as well... which is what is happening directly across the street from our hotel room! I tried to take a video with my cell phone camera but since it was raining it just didn't come out so well. Just picture 3 giant cranes - one with a claw, one with pinchers and one with an over sized jackhammer bashing into the roof of a building. It was like Doc Oc from Spiderman never got called back for the movie sequel and had to find work in demolition in Buffalo, NY. Anyway, it was a pretty loud day and not the best for resting.
This morning when I did Mom's lovanox shot she said it didn't hurt but it immediately started spurting like a geyser in Yellowstone National Park. I've never been there, but I don't have to now. I know what it looks like in red. This is, I HOPE, because her platelets are low and we are anxious to see if the nurses at the clinic tomorrow have any suggestions to make sure this absolutely never happens again. Mom seemed to think everything was fine, but I was about ready to pass out and really - what's the sense of having your daughter there to take care of you if she's the one that needs the medical attention.
The rest of the day was thankfully low key. Mom has a very early appointment tomorrow and will be getting 2 chemo infusions. She's been pretty tired so hopefully it won't be too much of a challenge to get to and from the clinic tomorrow. After that, she's done until Friday with chemo and her numbers should start coming back up.
That's it for now.
Love,
Amy
This morning when I did Mom's lovanox shot she said it didn't hurt but it immediately started spurting like a geyser in Yellowstone National Park. I've never been there, but I don't have to now. I know what it looks like in red. This is, I HOPE, because her platelets are low and we are anxious to see if the nurses at the clinic tomorrow have any suggestions to make sure this absolutely never happens again. Mom seemed to think everything was fine, but I was about ready to pass out and really - what's the sense of having your daughter there to take care of you if she's the one that needs the medical attention.
The rest of the day was thankfully low key. Mom has a very early appointment tomorrow and will be getting 2 chemo infusions. She's been pretty tired so hopefully it won't be too much of a challenge to get to and from the clinic tomorrow. After that, she's done until Friday with chemo and her numbers should start coming back up.
That's it for now.
Love,
Amy
Sunday, October 3, 2010
Day 68 (Course 2 Day 13)
Today was a good day for Mom. I got on the road early so that Dad could get back for the golf event that Dan Porter so graciously organized. So early, in fact, that Dad got out of all of Mom's morning pills and shot! That's ok though - apparently I did a decent job today and Mom didn't think it hurt as bad as it has been lately. She said it was about one of the best ones ever.
Mom ate pretty well today and has been feeling pretty good considering everything she's going through. She was very happy to hear about all of the people that came to the Knolls for the event and all of the people that contributed to it. It sounded like a really nice day. The best part is knowing how many people are rooting for her and standing in her corner. This seems to be not just a physical challenge, but a mental one as well and these doses of spirit taste way better than her regular doses of pot"ass"ium and "crap"ulose.
She's all bundled up on the couch now putting off taking some of her pills. She's ripping coupons out of magazines and scratch and sniffing every perfume and air freshener advertisement in between commercials of various food related shows. Earlier, she had me put away some stuff she had collected into her drawer of "important papers" I noticed a "buy one get one free" admission to the Uptown Theatre amongst them. I don't think they have one in Buffalo, but it's so good to see her up to her old tricks.
Mom doesn't have to go to the clinic tomorrow since she has to get Chemo on Tuesday, so we are hoping to have a restful day for her. Again, thank you so much to everyone for your support today and Mom wishes everyone a great week.
Love,
Amy
Mom ate pretty well today and has been feeling pretty good considering everything she's going through. She was very happy to hear about all of the people that came to the Knolls for the event and all of the people that contributed to it. It sounded like a really nice day. The best part is knowing how many people are rooting for her and standing in her corner. This seems to be not just a physical challenge, but a mental one as well and these doses of spirit taste way better than her regular doses of pot"ass"ium and "crap"ulose.
She's all bundled up on the couch now putting off taking some of her pills. She's ripping coupons out of magazines and scratch and sniffing every perfume and air freshener advertisement in between commercials of various food related shows. Earlier, she had me put away some stuff she had collected into her drawer of "important papers" I noticed a "buy one get one free" admission to the Uptown Theatre amongst them. I don't think they have one in Buffalo, but it's so good to see her up to her old tricks.
Mom doesn't have to go to the clinic tomorrow since she has to get Chemo on Tuesday, so we are hoping to have a restful day for her. Again, thank you so much to everyone for your support today and Mom wishes everyone a great week.
Love,
Amy
Friday, October 1, 2010
Day 66 (Course 2 Day 11)
Hello Everyone,
I'm so sorry we didn't post yesterday. I honestly don't know where the time went.
Mom had an appointment at the clinic yesterday. We were there for a few hours getting an IV drip of some antibiotics that she'll have to take pro-actively through this whole course. She also got 3 more pills to take a day (yikes). These are just standard meds to take since her numbers are dropping and her immune system is compromised. The fun part is, Dad and I now have to hook her up to an IV every day for an hour while she gets one of the antibiotics through her port. I just got trained on this. It's pretty dummy-proof. I think we'll be able to manage.
We did have the pleasure of seeing Mr. Burns in the clinic yesterday. She wasn't assigned to Mom so we didn't have a chance to explain exactly how big the Potassium pills were. Instead, we disdained her from afar with our disapproving glares. I saved some of the pills for souvenirs so maybe we can bring them in to show her. I think anyone claiming these honkers are "small pills" should be forced to use one of them as a microphone while they deliver their speech about listening to the concerns of the patient at a local nursing college. Possibly a little harsh... I guess it's just easier to use a scapegoat since Leukemia isn't walking around in a white lab coat.
Mom had about 15 lbs of mashed potatoes and turkey for dinner last night. I can't believe how much she ate. It was literally more than I've ever seen her have for any Thanksgiving dinner. I made mashed potatoes and peas and we had a TV dinner that we heated up (we meaning me). I know - it doesn't sound very glamorous. Surprisingly, not a lot of glamorous stuff is happening out here. We were a little nervous Mom was going to throw up all of her dinner (we meaning me) but she kept it down and used it as an excuse to put off her pills and take a nap. She's so good at this stuff. I never see it coming. Since we're on Day 66 I'm just going to have to accept that I never will and on Day 200 I will still be reporting that Mom somehow tricked me into not having to take her pills for an extra hour. I've been calling her a tricksy little hobbit. Apparently, she's a hungry little hobbit too. I'm just glad she has her appetite back.
Dad will be getting here later today and we'll be doing the hand off. Things here otherwise are going pretty well. Our room at the Double Tree is great. The people here are so nice and we just love them. Even though Mom is going through such a bad experience, we feel so blessed. All of your love and support at home and the support from the people here is overwhelming. From the bottom of our hearts, thank you.
Love,
Amy
I'm so sorry we didn't post yesterday. I honestly don't know where the time went.
Mom had an appointment at the clinic yesterday. We were there for a few hours getting an IV drip of some antibiotics that she'll have to take pro-actively through this whole course. She also got 3 more pills to take a day (yikes). These are just standard meds to take since her numbers are dropping and her immune system is compromised. The fun part is, Dad and I now have to hook her up to an IV every day for an hour while she gets one of the antibiotics through her port. I just got trained on this. It's pretty dummy-proof. I think we'll be able to manage.
We did have the pleasure of seeing Mr. Burns in the clinic yesterday. She wasn't assigned to Mom so we didn't have a chance to explain exactly how big the Potassium pills were. Instead, we disdained her from afar with our disapproving glares. I saved some of the pills for souvenirs so maybe we can bring them in to show her. I think anyone claiming these honkers are "small pills" should be forced to use one of them as a microphone while they deliver their speech about listening to the concerns of the patient at a local nursing college. Possibly a little harsh... I guess it's just easier to use a scapegoat since Leukemia isn't walking around in a white lab coat.
Mom had about 15 lbs of mashed potatoes and turkey for dinner last night. I can't believe how much she ate. It was literally more than I've ever seen her have for any Thanksgiving dinner. I made mashed potatoes and peas and we had a TV dinner that we heated up (we meaning me). I know - it doesn't sound very glamorous. Surprisingly, not a lot of glamorous stuff is happening out here. We were a little nervous Mom was going to throw up all of her dinner (we meaning me) but she kept it down and used it as an excuse to put off her pills and take a nap. She's so good at this stuff. I never see it coming. Since we're on Day 66 I'm just going to have to accept that I never will and on Day 200 I will still be reporting that Mom somehow tricked me into not having to take her pills for an extra hour. I've been calling her a tricksy little hobbit. Apparently, she's a hungry little hobbit too. I'm just glad she has her appetite back.
Dad will be getting here later today and we'll be doing the hand off. Things here otherwise are going pretty well. Our room at the Double Tree is great. The people here are so nice and we just love them. Even though Mom is going through such a bad experience, we feel so blessed. All of your love and support at home and the support from the people here is overwhelming. From the bottom of our hearts, thank you.
Love,
Amy
Wednesday, September 29, 2010
Day 64 (Course 2 Day 9)
Hi Everyone,
Dad just handed off the baton to me so I'll be with Mom until Friday. Nothing much has happened the past couple of days. Mom was pretty sick to her stomach yesterday so she laid pretty low.
Mom has another appointment at the clinic bright and early tomorrow. Hopefully her numbers are good and she doesn't need any transfusions or supplements, but we'll update you on that when we get back.
Sorry we haven't had much to report. Hope you are all well!
Love,
Amy
Dad just handed off the baton to me so I'll be with Mom until Friday. Nothing much has happened the past couple of days. Mom was pretty sick to her stomach yesterday so she laid pretty low.
Mom has another appointment at the clinic bright and early tomorrow. Hopefully her numbers are good and she doesn't need any transfusions or supplements, but we'll update you on that when we get back.
Sorry we haven't had much to report. Hope you are all well!
Love,
Amy
Monday, September 27, 2010
Day 62- ( 7 in Course 2)
Hi - Sorry this is a little late. Today was pretty busy. Rita felt a little weak and dizzy this morning so when we got over to the clinic, we found out that her hemoglobin was a little low. Totally normal for her treatment and just required that she get 2 units of red blood cells. That took about 4.5 hours and while she was gettig tohse, I moved us into our new room. It is much more convenient with a kitchen area and living area separate from the bedroom. That will help Amy & I when we work and Rita wants to rest. Everything is good this evening and Rita is looking forward to a couple of quiet days. She does have plans to visit the exersize room each day and to try to maintain or even increase her strength. I will, of course, encourage her and take the one-eyed glare with the comfort that the excersize will only help her beat this thing.
That's it for tonight. Thanks to all for everything you continue to do to help us - especially the prayers.
Goodnight, Dave
That's it for tonight. Thanks to all for everything you continue to do to help us - especially the prayers.
Goodnight, Dave
Sunday, September 26, 2010
Day 61(Day 6 Course 2)
Hi Everyone,
It is so good to be here in Buffalo with Rita. She seems to be getting stronger every day. Two weeks ago, she could not walk with her walker to the clinic from the car. Now, she is motoring around the room and she even did eight minutes on the stationary bike today - up from 5.5 yesterday. She is eating better and drinking more fluids. Pills and potASSium are still problematic. We all hope that she can continue to get stronger even though we know that she will be going into a through again in the next few weeks. That is an expected result from the chemo. We will do our best to keep her free of infection. That may mean limiting visits again and if so, we'll let you know. It will depend on her numbers and what the doctors tell us. We are looking forward to our move tomorrow to a bigger room so that Rita can have "quiet time" when she needs it and we (Amy & I) can get our work done. That's it for tonight - more tomorrow.
Love, Dave
It is so good to be here in Buffalo with Rita. She seems to be getting stronger every day. Two weeks ago, she could not walk with her walker to the clinic from the car. Now, she is motoring around the room and she even did eight minutes on the stationary bike today - up from 5.5 yesterday. She is eating better and drinking more fluids. Pills and potASSium are still problematic. We all hope that she can continue to get stronger even though we know that she will be going into a through again in the next few weeks. That is an expected result from the chemo. We will do our best to keep her free of infection. That may mean limiting visits again and if so, we'll let you know. It will depend on her numbers and what the doctors tell us. We are looking forward to our move tomorrow to a bigger room so that Rita can have "quiet time" when she needs it and we (Amy & I) can get our work done. That's it for tonight - more tomorrow.
Love, Dave
Saturday, September 25, 2010
day 60... can you believe it?! (course 2 day 5)
it's hard to imagine that we are on our 60th day of treatment.. and 64 days ago none of this was even a thought.. i mean, mom knew something was wrong because of the blood tests.. but not this.. we couldn't have imagined this... so here we are.. making bathroom dinners, taking way too many horse pills, and trying to convince mom that potASSium is good for her.. she now calls it asshole juice. nice, eh?
so mom had a really good day today.. we moved very slowly, didn't rush around this morning and ended up taking our day trip to wegmans. they must have been running some great one day sales (which we could never find..) because i think about 75% of the population of buffalo was in that particular wegmans, and the other 25% were out for their mid-afternoon saturday drives.. not annoying at all to dad...
we got an interesting shopping cart with half of a bench attached so we could push mom and the cart around at the same time.. in theory, this was a great idea, but because of the volume of traffic in each aisle looking for the great sales.. it was kind of a fun experience.... we had to try to occupy aisles that only like 1 other person was in and then run to the other aisles looking for stuff... which mom didn't like because she wanted to see what brands were on sale.. anyways.. three hours later, we checked out and were on our way home. it was a fun day out.. mom was happy to be in a grocery store looking for bargains!
she took a power nap when we got home and then we went to the fitness center where she rode the exercise bike for 51/2 minutes! pretty good for her first try.. tomorrow she said she's doing 8.
we just finished our bathroom dinner... pan seared pork chops on our double burner, rice cooker mashed potatoes (might be the best ever mom said..) steamed corn and cinnamon applesauce. everything came out delicious and mom was so excited she ate everything off her plate, asked for a teaspoon more potatoes and applesauce (i accidently gave her a tablespoon and that put her over the edge)! then immediately fell asleep again! she's resting comfortably, trying not to think about her potASSium she has to take and hoping maybe we'll forget, i'm sure.
tomorrow we are going to work on some thank you notes.. (i know you don't believe me... ) we did get a couple out.. i figure you'll all have them by next year.. what's the thank you note etiquette when your sick? do you get an extra couple months, i mean, i think you get a year for wedding thank you's so sick thank you's should be at least 2 years!!
that's all for now. have a good night!
love.
so mom had a really good day today.. we moved very slowly, didn't rush around this morning and ended up taking our day trip to wegmans. they must have been running some great one day sales (which we could never find..) because i think about 75% of the population of buffalo was in that particular wegmans, and the other 25% were out for their mid-afternoon saturday drives.. not annoying at all to dad...
we got an interesting shopping cart with half of a bench attached so we could push mom and the cart around at the same time.. in theory, this was a great idea, but because of the volume of traffic in each aisle looking for the great sales.. it was kind of a fun experience.... we had to try to occupy aisles that only like 1 other person was in and then run to the other aisles looking for stuff... which mom didn't like because she wanted to see what brands were on sale.. anyways.. three hours later, we checked out and were on our way home. it was a fun day out.. mom was happy to be in a grocery store looking for bargains!
she took a power nap when we got home and then we went to the fitness center where she rode the exercise bike for 51/2 minutes! pretty good for her first try.. tomorrow she said she's doing 8.
we just finished our bathroom dinner... pan seared pork chops on our double burner, rice cooker mashed potatoes (might be the best ever mom said..) steamed corn and cinnamon applesauce. everything came out delicious and mom was so excited she ate everything off her plate, asked for a teaspoon more potatoes and applesauce (i accidently gave her a tablespoon and that put her over the edge)! then immediately fell asleep again! she's resting comfortably, trying not to think about her potASSium she has to take and hoping maybe we'll forget, i'm sure.
tomorrow we are going to work on some thank you notes.. (i know you don't believe me... ) we did get a couple out.. i figure you'll all have them by next year.. what's the thank you note etiquette when your sick? do you get an extra couple months, i mean, i think you get a year for wedding thank you's so sick thank you's should be at least 2 years!!
that's all for now. have a good night!
love.
Friday, September 24, 2010
day 59 (course 2 day 4)
hi everyone! i'm here with mom and dad in buffalo... it is great to see mom! she is so much stronger than she was even a week ago.
she had a pretty good day today, she balanced her checkbook.. wrote a few thank you notes and rested a lot.. dad got here around 4 and amy taught him how to do the chemo shot.. that was not as bad as he thought it was going to be... but it is a bit scary.. after all.. we're injecting mom with poison! amy left shortly after the chemo shot.. mom said she did such a great job and she's so thankful that amy is able to be here with her.
I got here around 6:30 and by 7 mom had me making a spaghetti dinner.. like camp style spaghetti.. we cooked meatballs in our rice cooker, then added sauce and let it simmer.. then we boiled pasta in a small saucepan using our new double burner.. this whole process made me a little nervous: 1st because our largest pot only holds about 2 cups of water... so boiling pasta was more like making wallpaper paste... 2nd we are in a a small room with a large smoke detector.. so we were quite sure our frying meatballs were going to set off the alarm in the hotel.. 3rd.. to prevent smoke from reaching the alarm, we moved our cooking to the bathroom.. that just is weird in itself.. right? after some strategic planning we pulled it all together and it wasn't bad at all! mom was happy and that's what counts!
shortly after dinner we had to give mom her potassium... amy made the orange liquid sound like a magical donut in Homer's eyes.. it's more like orange poison and now she hates orange anything... figures.. we gave her the 1 1/2 teaspoons she's supposed to get, lightly diluted with orange drink and she immediately threw it up and might never take it again. so now we're trying to think of all the other ways we can hide this terribly salty orange liquid sweat.. in smoothies... in v8 juice... in applesauce... cranberry juice... nothing sounds good. let us know if you have any suggestions!!
tomorrow is going to be a good day we hope.. some more thank you notes.. maybe a day trip to wegmans and if we get really inspired, maybe a drive to niagra falls.
mom is so grateful for all your prayers and support.. she can't believe all of the groups that are praying for her.. many of the people don't even know her and she's very touched that you are all out there praying for her..
k.. that's it for now..
love.
she had a pretty good day today, she balanced her checkbook.. wrote a few thank you notes and rested a lot.. dad got here around 4 and amy taught him how to do the chemo shot.. that was not as bad as he thought it was going to be... but it is a bit scary.. after all.. we're injecting mom with poison! amy left shortly after the chemo shot.. mom said she did such a great job and she's so thankful that amy is able to be here with her.
I got here around 6:30 and by 7 mom had me making a spaghetti dinner.. like camp style spaghetti.. we cooked meatballs in our rice cooker, then added sauce and let it simmer.. then we boiled pasta in a small saucepan using our new double burner.. this whole process made me a little nervous: 1st because our largest pot only holds about 2 cups of water... so boiling pasta was more like making wallpaper paste... 2nd we are in a a small room with a large smoke detector.. so we were quite sure our frying meatballs were going to set off the alarm in the hotel.. 3rd.. to prevent smoke from reaching the alarm, we moved our cooking to the bathroom.. that just is weird in itself.. right? after some strategic planning we pulled it all together and it wasn't bad at all! mom was happy and that's what counts!
shortly after dinner we had to give mom her potassium... amy made the orange liquid sound like a magical donut in Homer's eyes.. it's more like orange poison and now she hates orange anything... figures.. we gave her the 1 1/2 teaspoons she's supposed to get, lightly diluted with orange drink and she immediately threw it up and might never take it again. so now we're trying to think of all the other ways we can hide this terribly salty orange liquid sweat.. in smoothies... in v8 juice... in applesauce... cranberry juice... nothing sounds good. let us know if you have any suggestions!!
tomorrow is going to be a good day we hope.. some more thank you notes.. maybe a day trip to wegmans and if we get really inspired, maybe a drive to niagra falls.
mom is so grateful for all your prayers and support.. she can't believe all of the groups that are praying for her.. many of the people don't even know her and she's very touched that you are all out there praying for her..
k.. that's it for now..
love.
Thursday, September 23, 2010
Day 58 - Mr. Burns, NP (course 2 day 3)
Today started out with a quick trip to the hospital to do some blood labs... that lasted 6 hours. Typically, when they draw Mom's blood, they are looking for any counts that are out of the ordinary. If her platelets are low, for instance, they'll give her a transfusion.
Mom didn't need any blood, but she needed more potassium. We sat and chatted while they gave her a 3 hour drip of it. She also got prescribed more pills. When Mom was inpatient, every time she complained about taking a pill in the hospital, a nurse would say, "Just be happy you don't have to take Potassium - those are AWFUL!!" Each time I cringed... I had a sneaking suspicion that it was a jinx. Conspiracy theory, perhaps... but I'm telling you - they said it often and always followed it with a Mr. Burns cackle complete with tapping fingers (that part is hindsight... and possibly imagined). These tall tales of giant pills were a misfortune of someone else - some poor sap out there was choking down this awful pill and Mom's only solace was that at least she didn't have to take THAT pill. Frickin figures. Mom tried bargaining with promises of giant meals full of nothing but bananas rolled in spinach. She had crocodile tears. It was heartbreaking, but the Nurse Practitioner wouldn't budge. There was no alternative.
These pills have lived up to the reputation that preceded them. They are huge, honking, bigger than a shrimp pills. If I had a helmet and a shield available, I would have been wearing it when I inched over to show her what they looked like. To top it all off, they are capsules - which means we can't even pulverize them into 5 tiny shards like we used to do with the Prednisone. After an extremely brief discussion (Mom literally looked at me and said "No way am I taking that." - end of story) I called the Pharmacy to plead for an alternative. Surely there must be some way of dissolving this or sprinkling it on applesauce - I think Mom would have rather shoved the thing in her ear than try to swallow it. I braced myself for the response, with the lump in my throat swelling as quickly as the tears in Mom's eyes. "Sure, Ms. Briggs. We have that available in a liquid form if you would like. Is orange flavor ok or would she prefer cherry?" From here on out, that Nurse Practitioner will be referred to as Mr. Burns.
Mom didn't need any blood, but she needed more potassium. We sat and chatted while they gave her a 3 hour drip of it. She also got prescribed more pills. When Mom was inpatient, every time she complained about taking a pill in the hospital, a nurse would say, "Just be happy you don't have to take Potassium - those are AWFUL!!" Each time I cringed... I had a sneaking suspicion that it was a jinx. Conspiracy theory, perhaps... but I'm telling you - they said it often and always followed it with a Mr. Burns cackle complete with tapping fingers (that part is hindsight... and possibly imagined). These tall tales of giant pills were a misfortune of someone else - some poor sap out there was choking down this awful pill and Mom's only solace was that at least she didn't have to take THAT pill. Frickin figures. Mom tried bargaining with promises of giant meals full of nothing but bananas rolled in spinach. She had crocodile tears. It was heartbreaking, but the Nurse Practitioner wouldn't budge. There was no alternative.
These pills have lived up to the reputation that preceded them. They are huge, honking, bigger than a shrimp pills. If I had a helmet and a shield available, I would have been wearing it when I inched over to show her what they looked like. To top it all off, they are capsules - which means we can't even pulverize them into 5 tiny shards like we used to do with the Prednisone. After an extremely brief discussion (Mom literally looked at me and said "No way am I taking that." - end of story) I called the Pharmacy to plead for an alternative. Surely there must be some way of dissolving this or sprinkling it on applesauce - I think Mom would have rather shoved the thing in her ear than try to swallow it. I braced myself for the response, with the lump in my throat swelling as quickly as the tears in Mom's eyes. "Sure, Ms. Briggs. We have that available in a liquid form if you would like. Is orange flavor ok or would she prefer cherry?" From here on out, that Nurse Practitioner will be referred to as Mr. Burns.
The rest of the day went smoothly and Mom is looking forward to the weekend when she only has to have one shot per day.
Love,
Amy
Wednesday, September 22, 2010
Day 57 (course 2 day 2)
Today was pretty low key. Mom did some of her thank you notes. Now we just have to track down the stamps and get them in the mail. She's been wanting to do this for quite some time and feels good to be able to accomplish that task - even if it was just a few of them. She has so many to write. So many of you have been so thoughtful. Thank you for that.
The home health nurse came today to teach me how to administer the shot. It's a little more complicated than the Lovanox shot but I was able to manage. Mom said it didn't even hurt. Between that and the pills she had 2 kinds of chemo today and will for the next 2 days as well.
Mom has an early morning appointment at the clinic tomorrow to check her blood. She'll be going to the clinic twice a week so they can monitor her blood and make sure her numbers are in order - white cells, platelets, and especially liver enzymes.
Mom hopes everyone is doing well and sends her love.
Love,
Amy
The home health nurse came today to teach me how to administer the shot. It's a little more complicated than the Lovanox shot but I was able to manage. Mom said it didn't even hurt. Between that and the pills she had 2 kinds of chemo today and will for the next 2 days as well.
Mom has an early morning appointment at the clinic tomorrow to check her blood. She'll be going to the clinic twice a week so they can monitor her blood and make sure her numbers are in order - white cells, platelets, and especially liver enzymes.
Mom hopes everyone is doing well and sends her love.
Love,
Amy
Tuesday, September 21, 2010
Day 56 - First Day of Course 2a (course 2 day 1)
Mom did great today. It was a long morning for her - very early start and a lot of waiting. Then she had a chemo injection in her spine, a shot of chemo in her belly, a drip bag of chemo and a couple pills of more chemo. She handled all of this like a champ. We got her back to the hotel room and Dad had to get going home to Utica until Friday when he'll be returning for the weekend.
Mom got a well deserved 6 hour nap!! She woke up feeling pretty good and we had a nice little pasta roni and peas dinner. We're not really sure what to expect tonight as far as side effects go. These drugs affect everyone differently so for the time being we're trying to stay prepared and hoping for the best.
One of the chemo shots will have to be delivered by either myself or Dad. The nurse assured us that we would be trained until we felt "comfortable" with this process. Technically, it should be manageable since it's similar to how we already deliver the Lovanox. I'm not sure how to wrap my brain around getting "comfortable" with injecting my mother with what is essentially poison, but that's probably an entry for my Dear Diary blog.
Mom hopes everyone is well and sends her love and thanks for all the support.
Love,
Amy
Mom got a well deserved 6 hour nap!! She woke up feeling pretty good and we had a nice little pasta roni and peas dinner. We're not really sure what to expect tonight as far as side effects go. These drugs affect everyone differently so for the time being we're trying to stay prepared and hoping for the best.
One of the chemo shots will have to be delivered by either myself or Dad. The nurse assured us that we would be trained until we felt "comfortable" with this process. Technically, it should be manageable since it's similar to how we already deliver the Lovanox. I'm not sure how to wrap my brain around getting "comfortable" with injecting my mother with what is essentially poison, but that's probably an entry for my Dear Diary blog.
Mom hopes everyone is well and sends her love and thanks for all the support.
Love,
Amy
Monday, September 20, 2010
Day 55 - Rita's in Remission!
That's the big news. Mom had 0% blasts in her bone marrow from the biopsy last Monday. This is a little complicated to understand because the word "remission" has been used in every day language to be synonymous with "cured", which it is not.
I'll attempt to explain this briefly... remission means, as we've previously mentioned, that the patient (Mom) has <1% blast cells (abnormal cells). Mom and her Doctors are still charged with keeping the blast cells from coming back - that's what Course 2, Course 3 and the Stem Cell Transplant will try to accomplish. In this type of illness, ALL, the blast cells can sometimes come back (relapse). There isn't a set equation for exactly how long "remission" has to be until the patient (Mom) is considered "cured" but it can be anywhere from 2-5 years based on a million circumstances and opinions. We're looking forward to that, but trying not to get hung up on the details because what matters now is that Mom is where she needs to be in order to proceed with the treatment.
Mom has completed Course 1 and 1A under the Pediatric Protocol, which many of you know. Now, she's moving back to the Standard Care Protocol, which the Doctors think will be easier on her liver. We don't know exactly what the differences are yet, but it appears to be types and dosages of the various Chemo drugs. Since most of us have no real frame of reference, this is probably too much information but that's the general overview of what we found out today.
Mom had low Potassium so today Dad and I ran to the grocery store while Mom received some intravenous Potassium supplement in the IV Clinic (with - you guessed it - a beeping pole). We stocked up on a list of suggested items from a pamphlet provided by Dr. Wetzler. Mom will be working hard on eating a lot of these fruits and vegetables - bananas, oranges, apricots, avocados, spinach, beans, potatoes, etc. and drinking plenty of fluids. Exercise is going to be important too.
Anyway, the Course 2 start day was delayed one more day. It will be starting tomorrow instead. This will be her new "big day" of 4 different kinds of Chemo. We weren't able to start today because... wait for it... the Lovenox shot!! Yup, that's right! AGAIN! We were smart enough to hold off this morning but in an interesting twist of events we now have to hold off for TWO days prior to these treatments. This was news to us. Apparently not to the Doctors and Nursing staff... but to us it was certainly a surprise! This blow was minor and softened greatly by the news of Mom's biopsy being so favorable.
Another early day tomorrow (poor Mom is not looking forward to a 7AM appointment), and a couple more important lessons learned. We're going to be submitting these to a fortune cookie company for consideration, although I'm not sure they'd fit on the wrapper:
I'll attempt to explain this briefly... remission means, as we've previously mentioned, that the patient (Mom) has <1% blast cells (abnormal cells). Mom and her Doctors are still charged with keeping the blast cells from coming back - that's what Course 2, Course 3 and the Stem Cell Transplant will try to accomplish. In this type of illness, ALL, the blast cells can sometimes come back (relapse). There isn't a set equation for exactly how long "remission" has to be until the patient (Mom) is considered "cured" but it can be anywhere from 2-5 years based on a million circumstances and opinions. We're looking forward to that, but trying not to get hung up on the details because what matters now is that Mom is where she needs to be in order to proceed with the treatment.
Mom has completed Course 1 and 1A under the Pediatric Protocol, which many of you know. Now, she's moving back to the Standard Care Protocol, which the Doctors think will be easier on her liver. We don't know exactly what the differences are yet, but it appears to be types and dosages of the various Chemo drugs. Since most of us have no real frame of reference, this is probably too much information but that's the general overview of what we found out today.
Mom had low Potassium so today Dad and I ran to the grocery store while Mom received some intravenous Potassium supplement in the IV Clinic (with - you guessed it - a beeping pole). We stocked up on a list of suggested items from a pamphlet provided by Dr. Wetzler. Mom will be working hard on eating a lot of these fruits and vegetables - bananas, oranges, apricots, avocados, spinach, beans, potatoes, etc. and drinking plenty of fluids. Exercise is going to be important too.
Anyway, the Course 2 start day was delayed one more day. It will be starting tomorrow instead. This will be her new "big day" of 4 different kinds of Chemo. We weren't able to start today because... wait for it... the Lovenox shot!! Yup, that's right! AGAIN! We were smart enough to hold off this morning but in an interesting twist of events we now have to hold off for TWO days prior to these treatments. This was news to us. Apparently not to the Doctors and Nursing staff... but to us it was certainly a surprise! This blow was minor and softened greatly by the news of Mom's biopsy being so favorable.
Another early day tomorrow (poor Mom is not looking forward to a 7AM appointment), and a couple more important lessons learned. We're going to be submitting these to a fortune cookie company for consideration, although I'm not sure they'd fit on the wrapper:
- Instead of "A watched pot never boils" how about "A watched IV drip bag never runs out"?
- Instead of "No news is good news!" how about "No news is not preferred when important news regarding pre-treatment instructions should be delivered!!!"
Hey, if Confucius said it they'd pay attention. We are open for suggestions if anyone has any more thoughts.
Love,
Amy
Sunday, September 19, 2010
Day 54... Buffalo or Bust!
Well, we're back in Buffalo. While this isn't exactly where Mom would choose to spend her time, we all know this is what's best for her right now. We're just happy for the opportunity to get her better.
Tomorrow probably isn't going to be the best day. It's the most rigorous of treatment days for Course 2. Mom will have interthecal chemo (in her spine) and have to lay flat for an hour. She also be administered a chemo drip for about 3 hours. Between the bloodwork, waiting, talking to Dr's, waiting, asking questions, waiting, chemo, waiting, more poking and prodding, waiting... and a few beeps from some random pole for good measure... we're expecting it's going to be extremely long. The good news is that once tomorrow is over with, she has a lighter schedule until day 29 of Course 2.
Dad, Mom and I are settled into the DoubleTree, which is connected right to the hospital. That means as long as we are here we won't have to go outside and brave the elements. The room is already set at about equator degrees (I'd say between 90-92?) so I have a feeling it's not even going to be Winter this year as far as Mom's concerned.
Mom hopes everyone had a nice weekend and has a good week at work. We'll update you tomorrow to let you know how everything went.
Love,
Amy
Tomorrow probably isn't going to be the best day. It's the most rigorous of treatment days for Course 2. Mom will have interthecal chemo (in her spine) and have to lay flat for an hour. She also be administered a chemo drip for about 3 hours. Between the bloodwork, waiting, talking to Dr's, waiting, asking questions, waiting, chemo, waiting, more poking and prodding, waiting... and a few beeps from some random pole for good measure... we're expecting it's going to be extremely long. The good news is that once tomorrow is over with, she has a lighter schedule until day 29 of Course 2.
Dad, Mom and I are settled into the DoubleTree, which is connected right to the hospital. That means as long as we are here we won't have to go outside and brave the elements. The room is already set at about equator degrees (I'd say between 90-92?) so I have a feeling it's not even going to be Winter this year as far as Mom's concerned.
Mom hopes everyone had a nice weekend and has a good week at work. We'll update you tomorrow to let you know how everything went.
Love,
Amy
Saturday, September 18, 2010
day 53... last day home for a while!
Yup.. seems hard to believe our 2 weeks are over! we spent the day packing, organizing, shopping for supplies and hanging out. it was a good day and mom was happy to see everyone..
there's been a small change, the hope lodge isn't able to accomodate mom right now so they'll be checking in to the double tree tomorrow and staying for at least a week there.. maybe more.. we'll find out sometime this week. we are ok with this change.. although the hope lodge was nice and free, the double tree is connected to the hospital and mom would never have to go outside (thinking ahead a few months!)
dyle came over to see mom today.. they were both so happy to see eachother.. dyle built mom a large step for the back sliding door so she could get out the door with her walker a little easier and I think he's also going to work on a ramp for the back!
sherry brought over some more hats and mom loved them.. especially the velvet one that sherry's going to tailor to mom's specifications.. bigger brim... wider top.. ties for under her chin. it's going to be cute!
mom just said goodnight.. she's going to enjoy her last night for a while in her new bedroom... being as comfortable as she can!
we'll chat more tomorrow..
love.
there's been a small change, the hope lodge isn't able to accomodate mom right now so they'll be checking in to the double tree tomorrow and staying for at least a week there.. maybe more.. we'll find out sometime this week. we are ok with this change.. although the hope lodge was nice and free, the double tree is connected to the hospital and mom would never have to go outside (thinking ahead a few months!)
dyle came over to see mom today.. they were both so happy to see eachother.. dyle built mom a large step for the back sliding door so she could get out the door with her walker a little easier and I think he's also going to work on a ramp for the back!
sherry brought over some more hats and mom loved them.. especially the velvet one that sherry's going to tailor to mom's specifications.. bigger brim... wider top.. ties for under her chin. it's going to be cute!
mom just said goodnight.. she's going to enjoy her last night for a while in her new bedroom... being as comfortable as she can!
we'll chat more tomorrow..
love.
Friday, September 17, 2010
Day 52
We had another special day at home today. Mom visited with a couple of her dear friends, Diane and Aleyne. The house was full of raucous laughter and the stories being told were hilarious. Laughter is the best medicine, right? She got a good dose today. I have a feeling Mom preferred their medicine to the pills we have to force-feed her 4 times a day... thanks for upstaging us, Diane and Aleyne! They also came bearing a variety of delicious soups and treats for Mom and some special gifts for her. Mom continues to be overwhelmed with everyones' generosity - we all are.
Kelly came with her famous Shepard's Pie that Mom has been pining for. After a small cooking lesson regarding why putting paper recipes in the oven is a bad idea that Dad delivered to our resident Home Economics teacher... who shall remain nameless... the house was full of a delicious smell that could never be replicated by any beef pie Yankee Candle. It was a really special treat for us.
We're going to be pretty busy tomorrow preparing for the trip out to Buffalo. Hopefully we'll all sleep well and wake refreshed to tackle another hectic day.
Mom hopes everyone has a nice weekend and sends her love to everyone.
Love,
Amy
Kelly came with her famous Shepard's Pie that Mom has been pining for. After a small cooking lesson regarding why putting paper recipes in the oven is a bad idea that Dad delivered to our resident Home Economics teacher... who shall remain nameless... the house was full of a delicious smell that could never be replicated by any beef pie Yankee Candle. It was a really special treat for us.
We're going to be pretty busy tomorrow preparing for the trip out to Buffalo. Hopefully we'll all sleep well and wake refreshed to tackle another hectic day.
Mom hopes everyone has a nice weekend and sends her love to everyone.
Love,
Amy
Thursday, September 16, 2010
Day 51
Today was another good day for Mom. A little hectic, but good. She had a really nice visit with her Aunt Lisa, who generously brought delicious brownies and some other very thoughtful gifts. She found a ladybug flyswatter for Mom! It's pretty fitting because just the other day Mom "couldn't believe that a friggin bug would fly in here" when we were getting her into bed. She thought that bug was being very disrespectful and we were all very surprised that this particular bug was so inconsiderate. The flyswatter would have come in handy then. Also, for the spider incident.
Sue and Keith were able to stop over and spend some time with Mom. Susie cut Mom's wigs and got her all dazzled up - she looked great. They brought some scarves over and we played around with those for a little while. Mom was really happy to see them.
Lisa just ran to KFC to try and get some food that Mom has a taste for. Eating has been a little more challenging lately as everything seems to taste like a "belt buckle" to Mom. Hopefully this is something that will pass and she'll be back on the schedule of eating footlong subs and seafood extravaganzas.
Tomorrow should be much of the same thing. For now, Mom is just enjoying her house and especially her fireplace. She wishes you all a good night and sends her love and thank yous to everyone.
Love,
Amy
Sue and Keith were able to stop over and spend some time with Mom. Susie cut Mom's wigs and got her all dazzled up - she looked great. They brought some scarves over and we played around with those for a little while. Mom was really happy to see them.
Lisa just ran to KFC to try and get some food that Mom has a taste for. Eating has been a little more challenging lately as everything seems to taste like a "belt buckle" to Mom. Hopefully this is something that will pass and she'll be back on the schedule of eating footlong subs and seafood extravaganzas.
Tomorrow should be much of the same thing. For now, Mom is just enjoying her house and especially her fireplace. She wishes you all a good night and sends her love and thank yous to everyone.
Love,
Amy
day 50: september 15, 2010
Hmm... well I promised I'd get this out to you last night.. I don't know where the time or my energy goes!
mom had another great day yesterday.. she had me get 36 cans of cora san marzano tomatoes ON SALE at chanatry's for .99 each... that should say it all!
shes feeling better each day, stronger, more positive, and even though she wishes she didn't have to go back at all.. she will be ready on monday.
she didn't take any pain meds in the morning, so she was able to get through the whole paper without napping, which was one of her gols! she did 6 laps.. great physical therapy.. and mom was very peckish throughout the day.. pistachio ice cream that amy picked the nuts out of.. lime jello, then cherry jello, cake, pierogies, fruit.. all sorts of stuff!
we've started a list of items to be packed for this trip.. we hope not to take 4 car loads out there, but i'm guessing it will be close!
mom, sancho and lulu napped for the afternoon so amy was able to get a lot done.. I guess they were very good babysitters all day!
not much else to update... will later.
love.
mom had another great day yesterday.. she had me get 36 cans of cora san marzano tomatoes ON SALE at chanatry's for .99 each... that should say it all!
shes feeling better each day, stronger, more positive, and even though she wishes she didn't have to go back at all.. she will be ready on monday.
she didn't take any pain meds in the morning, so she was able to get through the whole paper without napping, which was one of her gols! she did 6 laps.. great physical therapy.. and mom was very peckish throughout the day.. pistachio ice cream that amy picked the nuts out of.. lime jello, then cherry jello, cake, pierogies, fruit.. all sorts of stuff!
we've started a list of items to be packed for this trip.. we hope not to take 4 car loads out there, but i'm guessing it will be close!
mom, sancho and lulu napped for the afternoon so amy was able to get a lot done.. I guess they were very good babysitters all day!
not much else to update... will later.
love.
Wednesday, September 15, 2010
day 49: 9.14.10
ok, so this is a little late, but I like to keep the day's going.. helps us keep track of things!
Yesterday mom had a great day.. she had amy there with her, and sancho and lulu, and annette came over for a visit and brought her famous frittata! Sherry stopped over after work to see if mom wanted to make flax bags.. she wasn't up to it because she had been visiting for a while and just wanted to take the night off! We didn't stay very long after dad got home, we figured we'd give them some quiet, alone time.
she's feeling better every day and is working on getting stronger for this next course of treatment.
full update later, I promise!!
bye for now.
love.
Yesterday mom had a great day.. she had amy there with her, and sancho and lulu, and annette came over for a visit and brought her famous frittata! Sherry stopped over after work to see if mom wanted to make flax bags.. she wasn't up to it because she had been visiting for a while and just wanted to take the night off! We didn't stay very long after dad got home, we figured we'd give them some quiet, alone time.
she's feeling better every day and is working on getting stronger for this next course of treatment.
full update later, I promise!!
bye for now.
love.
Monday, September 13, 2010
More Info
Hi Everyone - we wanted to give a little more detail regarding Mom's trip to Buffalo and how everything shook out today.
Mom's liver is starting to get back to where it needs to be. It's made some progress that we are hoping continues through until she starts back up on Monday. Her other blood counts are all good - white blood cells slightly up due to a small, manageable infection but otherwise they are right where they need to be. We won't know how many blast cells she has from her bone marrow until Monday when we get there.
Mom was given the option of starting Thursday or Monday - there would have been no difference, just a few extra days of rest. Mom surprisingly (is there a special font for sarcasm?) chose to rest longer at home. That means we'll be packing up for the long haul on Sunday and heading out to get her settled in the Hope House for Course 2. Course 2 is the Consolidation Phase, where the chemo is designed to keep the leukemia from multiplying.
Course 2 consists of a phase A and phase B, both identical and both 28 days long for a total of 56 days. Day 1 will be a very difficult day (that will be next Monday). She will have interthecal chemotherapy in her spine, 3 hours of additional chemo and a host of other pills and shots. The remainder of 2A will be pills, shots and visits to the clinic. Some will be done at the hospital and sometimes they will send a nurse over to administer right at the Hope House. After the 28 days of Course 2A she does the same exact thing for Course 2B. Day 29 will be another tough day and the remainder of 2B will be pills, shots and visits to the clinic... etc.
While we're at the Hope House we're expected to get into a sort of normal routine. I think we all have a new definition of normal, but we're looking forward to having a kitchen, a private room where people are required to knock before entering and won't be doing so every 20 minutes, and we are happy to be rid of that dang beeping pole. Maybe we'll even make some friends that we can make Christmas cookies with. Whatever we do, we're going to do the best we can to get Mom better and get her home.
Tonight we sat around chatting about the day and wondering about what is to come. Mom was very happy to be able to spend some time catching up with Gina, who brought over a tray of lasagna that her mother, Barbara, made. She didn't even get out of the driveway and we had mom's piece heating up. Within minutes half the tray was gone and there was silence from all of us for the first time all day. It was delicious, needless to say. Dad is already wondering when an appropriate time to "put another request" in would be.
Tomorrow I'll be working from Mom's house and Sancho and LuLu will be taking over watching Mom. Just joking, they'll be helping but I'll be doing most of the dirty work. I think Mom might be a little more happy about taking her pills if I have them delivered on a paper cup strapped to LuLu's head though... I may have to try that tomorrow. We're always looking for new and interesting ways to make pill taking less miserable for Mom. I'll let everyone know how it goes.
Hope everyone is having a good night. Thanks again for all the well wishes and prayers.
Love,
Amy
Mom's liver is starting to get back to where it needs to be. It's made some progress that we are hoping continues through until she starts back up on Monday. Her other blood counts are all good - white blood cells slightly up due to a small, manageable infection but otherwise they are right where they need to be. We won't know how many blast cells she has from her bone marrow until Monday when we get there.
Mom was given the option of starting Thursday or Monday - there would have been no difference, just a few extra days of rest. Mom surprisingly (is there a special font for sarcasm?) chose to rest longer at home. That means we'll be packing up for the long haul on Sunday and heading out to get her settled in the Hope House for Course 2. Course 2 is the Consolidation Phase, where the chemo is designed to keep the leukemia from multiplying.
Course 2 consists of a phase A and phase B, both identical and both 28 days long for a total of 56 days. Day 1 will be a very difficult day (that will be next Monday). She will have interthecal chemotherapy in her spine, 3 hours of additional chemo and a host of other pills and shots. The remainder of 2A will be pills, shots and visits to the clinic. Some will be done at the hospital and sometimes they will send a nurse over to administer right at the Hope House. After the 28 days of Course 2A she does the same exact thing for Course 2B. Day 29 will be another tough day and the remainder of 2B will be pills, shots and visits to the clinic... etc.
While we're at the Hope House we're expected to get into a sort of normal routine. I think we all have a new definition of normal, but we're looking forward to having a kitchen, a private room where people are required to knock before entering and won't be doing so every 20 minutes, and we are happy to be rid of that dang beeping pole. Maybe we'll even make some friends that we can make Christmas cookies with. Whatever we do, we're going to do the best we can to get Mom better and get her home.
Tonight we sat around chatting about the day and wondering about what is to come. Mom was very happy to be able to spend some time catching up with Gina, who brought over a tray of lasagna that her mother, Barbara, made. She didn't even get out of the driveway and we had mom's piece heating up. Within minutes half the tray was gone and there was silence from all of us for the first time all day. It was delicious, needless to say. Dad is already wondering when an appropriate time to "put another request" in would be.
Tomorrow I'll be working from Mom's house and Sancho and LuLu will be taking over watching Mom. Just joking, they'll be helping but I'll be doing most of the dirty work. I think Mom might be a little more happy about taking her pills if I have them delivered on a paper cup strapped to LuLu's head though... I may have to try that tomorrow. We're always looking for new and interesting ways to make pill taking less miserable for Mom. I'll let everyone know how it goes.
Hope everyone is having a good night. Thanks again for all the well wishes and prayers.
Love,
Amy
Day 48 biopsy update
Hi everyone.. I know you are waiting as paitently as I am.. and while we do not have results from the bone marrow biopsy because they just completed it not too long ago, we do know that mom's numbers (blood counts) are good, so she'll start course 2 on Monday!!! I haven't found out yet why monday instead of thursday.. we'll have to wait for them to get home before we know that!
thanks for your prayers.. you helped more than you could know.
update later.
love.
thanks for your prayers.. you helped more than you could know.
update later.
love.
Sunday, September 12, 2010
day 47... the Hope Lodge
mom had a pretty good day today.. she slept well, had pancakes and popscicles for breakfast and a seafood extravaganza for lunch. after a short rest and a visit with family, she had to leave for buffalo. this time, mom and dad are staying at the hope lodge.. finally.. mom got to see what it's like there! they just arrived not too long ago and are settled in their room. it's beautiful they said. we are all so happy and relieved! they have a little tv in their room and the bathroom is right next door. (the rooms that have bathrooms in them are reserved for patients receiving chemotherapy). mom said they have the heat on so it's nice and toasty in there.. plus she has 3 flax bags and a couple fleece blankets too!
here's a link to the virtual tour for those of you interested! http://www5.cancer.org/docroot/subsite/hopelodge/NY_Buffalo/nyb_virtual_tour.asp
we are all very anxious about tomorrow's tests. they will determine whether or not mom can move on to course 2 of her treatment. pray for good results.
mom should be home tomorrow afternoon and i'll update as soon as i can with any news.
good night.
love.
here's a link to the virtual tour for those of you interested! http://www5.cancer.org/docroot/subsite/hopelodge/NY_Buffalo/nyb_virtual_tour.asp
we are all very anxious about tomorrow's tests. they will determine whether or not mom can move on to course 2 of her treatment. pray for good results.
mom should be home tomorrow afternoon and i'll update as soon as i can with any news.
good night.
love.
Saturday, September 11, 2010
day 46 Lobster fest
so today was fun.. matt came up with the idea to have a lobster fest.. really a new england seafood boil. we had shrimp cocktail, clam chowder, steamed clams, steamed lobsters, salt potatoes, corn and steak. aren't you jealous? yea, it was delicious! we had a great time and mom was very happy.
they're packing up tomorrow to head for buffalo for the bone marrow biopsy on monday.. they get to stay at the hope lodge, so mom's excited. she's packed her camera and tape measure so she can plan what she's bringing! she wants to see each room so she can put in requests for which one she'd prefer... even though having a room at all is a blessing! the hope lodge doesn't know what they're in for!
we don't have that much to chat about today... we're just so happy to have these moments with mom and are cherishing every single minute.
love.
they're packing up tomorrow to head for buffalo for the bone marrow biopsy on monday.. they get to stay at the hope lodge, so mom's excited. she's packed her camera and tape measure so she can plan what she's bringing! she wants to see each room so she can put in requests for which one she'd prefer... even though having a room at all is a blessing! the hope lodge doesn't know what they're in for!
we don't have that much to chat about today... we're just so happy to have these moments with mom and are cherishing every single minute.
love.
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