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Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
How are things? Are you all home now?
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Mississippi Magnolia
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Day 41
Everyone is home.
On Day 39, my mom was able to go home. It was amazing the difference in her after just a few hours at home. She was more energetic, had a better appetite, and did more. What a difference!
On day 40 she got back on her exerciser. She commented that it was harder than she expected. She also said that the night sleep she had just had was one of the best ever. She won't be leaving the house for a while except to go to Roswell, but both she and my Dad get back into a more normal routine.
Today, I went home. I have been away a long time. I have to do some travel for work and it is very nice to be home to get organized first. More than 6 weeks of mail to sort out!
The next appointment is Monday for lab work. It will be a good marker to see how her counts are holding up.
I will keep in touch as things happen. I have Day 100 marked on my calendar!
-Allison
Everyone is home.
On Day 39, my mom was able to go home. It was amazing the difference in her after just a few hours at home. She was more energetic, had a better appetite, and did more. What a difference!
On day 40 she got back on her exerciser. She commented that it was harder than she expected. She also said that the night sleep she had just had was one of the best ever. She won't be leaving the house for a while except to go to Roswell, but both she and my Dad get back into a more normal routine.
Today, I went home. I have been away a long time. I have to do some travel for work and it is very nice to be home to get organized first. More than 6 weeks of mail to sort out!
The next appointment is Monday for lab work. It will be a good marker to see how her counts are holding up.
I will keep in touch as things happen. I have Day 100 marked on my calendar!
-Allison
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Leealli - Name: Allison
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 70
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Day 47
My mom had two appointments at Roswell this week. On Monday, she went for blood work. Then they asked her to wait around and check back in at the BMT clinic for the results. They do this in case the counts are low. They give a growth factor shot if this happens.
Counts:
WBC: 3.77
Platelets: 274
Hemoglobin: 10.4
ANC: 248
While there, my mom asked to be seen by the doctor since her right arm was feeling 'different'. This was the arm that swelled after a blood clot formed while she was in the hospital. The doctor had a look and decided to double her Lovenox amount. So now she is back to 2 shots per day. He asked her to come back in two days.
Today, she went back. She had to have a blood test to check for the Lovenox level. This test needs to be taken 4 hours after a Lovenox dose. So my parents were up early - 6 a.m. Lovenox shot at home, and then drove to Roswell for the blood test. She had to stay to be seen by a nurse and then they were back on the road at 11 am. It will be several days before the results of the test comes back.
My mom even reports that she went to the grocery store with my Dad today. That's her first outing to anywhere other than the hospital.
She seems to be in good spirits. I know that she is glad to be home.
I am on the road again traveling for work and working on getting my own life back to some sort of normal.
After so many days of making daily reports here, I still sometimes get to the end of the day and feel like I forgot to do something.
-Allison
My mom had two appointments at Roswell this week. On Monday, she went for blood work. Then they asked her to wait around and check back in at the BMT clinic for the results. They do this in case the counts are low. They give a growth factor shot if this happens.
Counts:
WBC: 3.77
Platelets: 274
Hemoglobin: 10.4
ANC: 248
While there, my mom asked to be seen by the doctor since her right arm was feeling 'different'. This was the arm that swelled after a blood clot formed while she was in the hospital. The doctor had a look and decided to double her Lovenox amount. So now she is back to 2 shots per day. He asked her to come back in two days.
Today, she went back. She had to have a blood test to check for the Lovenox level. This test needs to be taken 4 hours after a Lovenox dose. So my parents were up early - 6 a.m. Lovenox shot at home, and then drove to Roswell for the blood test. She had to stay to be seen by a nurse and then they were back on the road at 11 am. It will be several days before the results of the test comes back.
My mom even reports that she went to the grocery store with my Dad today. That's her first outing to anywhere other than the hospital.
She seems to be in good spirits. I know that she is glad to be home.
I am on the road again traveling for work and working on getting my own life back to some sort of normal.
After so many days of making daily reports here, I still sometimes get to the end of the day and feel like I forgot to do something.
-Allison
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Leealli - Name: Allison
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 70
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Day 61
Yesterday was my mom's scheduled follow-up doctor's appointment at the BMT clinic – the first since she was discharged to go home (other than blood work).
This appointment was supposed to be last week, but a snow storm prevented my parents from making the trip to Buffalo.
So, as usual, the visit begins with blood work and then some waiting for the lab results. My mom was seen by one of the NP's who consulted with one of the BMT doctors. They are pleased with her progress.
Counts:
WBC: 3.59
Hemoglobin: 12.2
Platelets: 337
ANC: 2.32
She has been experiencing some GI problems in the way of cramps, and they did a stool culture to see what was going on. Today, my mom got a call from the NP saying she has C. diff. This certainly explains all the symptoms. Her symptoms are considered mild and without fever, so a two week course of Flagyl (metronidazole) has been started. I have read in many places on these boards about C. diff; and always had it in the back of my mind as she was prescribed more and more antibiotics.
The next appointment is in four weeks for all the tests needed for re-staging: blood work, PFT, skeletal scan, bone density scan, bone marrow biopsy (these are the tests I know about right now). Then, two weeks after that, on day 101, she will see the BMT doc to go over the results. Then, she will be turned back over to her oncologist.
In the meantime, my mom admits to some cabin fever. She has been cooking a lot. Two days ago, a good friend of hers came over for coffee. Otherwise, she seems in good spirits. My brother and sister-in-law send her lots of photos of the grandchildren, which I know she enjoys.
I have been away for 3 weeks now, traveling for work, and, over the last 4 days, actually being in my own home. It has been since Thanksgiving that I have been in my own house for more than 2 nights. I am enjoying an evening catching up on TiVo programs from before Christmas and making hats to add to my mom's collection.
I'll be back when there is more to report. The stem cell transplant process continues ...
-Allison
Yesterday was my mom's scheduled follow-up doctor's appointment at the BMT clinic – the first since she was discharged to go home (other than blood work).
This appointment was supposed to be last week, but a snow storm prevented my parents from making the trip to Buffalo.
So, as usual, the visit begins with blood work and then some waiting for the lab results. My mom was seen by one of the NP's who consulted with one of the BMT doctors. They are pleased with her progress.
Counts:
WBC: 3.59
Hemoglobin: 12.2
Platelets: 337
ANC: 2.32
She has been experiencing some GI problems in the way of cramps, and they did a stool culture to see what was going on. Today, my mom got a call from the NP saying she has C. diff. This certainly explains all the symptoms. Her symptoms are considered mild and without fever, so a two week course of Flagyl (metronidazole) has been started. I have read in many places on these boards about C. diff; and always had it in the back of my mind as she was prescribed more and more antibiotics.
The next appointment is in four weeks for all the tests needed for re-staging: blood work, PFT, skeletal scan, bone density scan, bone marrow biopsy (these are the tests I know about right now). Then, two weeks after that, on day 101, she will see the BMT doc to go over the results. Then, she will be turned back over to her oncologist.
In the meantime, my mom admits to some cabin fever. She has been cooking a lot. Two days ago, a good friend of hers came over for coffee. Otherwise, she seems in good spirits. My brother and sister-in-law send her lots of photos of the grandchildren, which I know she enjoys.
I have been away for 3 weeks now, traveling for work, and, over the last 4 days, actually being in my own home. It has been since Thanksgiving that I have been in my own house for more than 2 nights. I am enjoying an evening catching up on TiVo programs from before Christmas and making hats to add to my mom's collection.
- New Hats.jpg (68.66 KiB) Viewed 712 times
I'll be back when there is more to report. The stem cell transplant process continues ...
-Allison
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Leealli - Name: Allison
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 70
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Day 70
Just a quick check-in.
My mom is feeling better now that she is being treated for the C. diff. I am not sure what the follow up will be to that since she doesn't not have an appointment for several weeks.
With the frigid temperatures, it has not been hard for her to stay indoors. Both my brother and I are traveling a lot and keep her entertained with photos and reports of sun and warm temperatures!
I will be paying her a visit next week once I return from my travels and am sure that I have not caught a bug of my own from the trip.
I continue to learn from all of you on the many topics covered on this board.
-Allison
Just a quick check-in.
My mom is feeling better now that she is being treated for the C. diff. I am not sure what the follow up will be to that since she doesn't not have an appointment for several weeks.
With the frigid temperatures, it has not been hard for her to stay indoors. Both my brother and I are traveling a lot and keep her entertained with photos and reports of sun and warm temperatures!
I will be paying her a visit next week once I return from my travels and am sure that I have not caught a bug of my own from the trip.
I continue to learn from all of you on the many topics covered on this board.
-Allison
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Leealli - Name: Allison
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 70
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
So glad to see your posting. Had been trying to find anything since your mom's discharge. I had been following your mom's journey thru her transplant and Allison's diary of events and have downloaded every single word especially since I am the same age and on the fence as far as having a transplant myself. Please keep us informed of her progress!
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scubadiver47
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Allison – Wish her well from me and tell her to not to lose heart if the recovery is slow. For many it takes 100 days PLUS to get to feeling like one's old self. But it is a sweet feeling to eventually get back your weight, hair and hemoglobin!
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Mister Dana - Name: Mister Dana
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 66
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
scubadiver - I hope my mom's experiences help give you some guidance. I must say that, as far as I could tell, there never seemed to be any question about my mom having a transplant. As far as the oncologist was concerned, that was the goal. The only concern was from the BMT doc, and that was in regards to her age. It was determined that she was a good candidate because she had good home support, was active, and her numbers were good. As I read more and more on these boards, I see many people discussing the decision to have or not to have a transplant.
Mister Dana - Those are kind words. I feel like my mom is pretty patient. The fact that she is home has made a big difference. She said to me today, after seeing a friend that she had missed very much, that she was very grateful to be doing her recovery at home and not having to stay near the hospital at Hope Lodge for it. Just being around her own things and sleeping in her own bed have helped her heal enormously
I will continue to keep you posted.
-Allison
Mister Dana - Those are kind words. I feel like my mom is pretty patient. The fact that she is home has made a big difference. She said to me today, after seeing a friend that she had missed very much, that she was very grateful to be doing her recovery at home and not having to stay near the hospital at Hope Lodge for it. Just being around her own things and sleeping in her own bed have helped her heal enormously
I will continue to keep you posted.
-Allison
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Leealli - Name: Allison
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 70
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Day 75
My mom is wearing one of the new hats I made her today.
I came for a visit yesterday, coming from New Jersey, and my brother was coming in from Ohio for a family dinner. However, a water main break in my parents' town that started as a "boil water" order, and my bother and I bringing lots of drinking water with us, turned into a "no water at all" event.
So think, for just a moment, about that. No water. At all. Very tricky. As it turns out, this will go on for a few weeks while the line is being repaired, the reservoirs are filled, and the water is tested.
I was already well on my way with 20 gallons of water in my trunk. My brother didn't come, and we were all very disappointed to miss a chance to have an evening together. This also meant that my mom had done some food prep before the water ran out, so a sink of dirty dishes.
Because of my mom, a bit more care has to be taken ... clearly. There is Purell in every room. We have to take care to keep surfaces clean, and, once the snow melts, keep tubs of water covered.
My Dad and I spent some time shoveling snow IN to the house and filling tubs. I even melted several pots of snow on the stove to add speed up the melting process.
Snow takes a LONG time to melt on its own.
I will be cutting my trip short as not to stress the system any more than necessary. This morning, we all got in the car and went out to a restaurant in a town 30 minutes away. This was my mom's first outing. We brought a bottle of water for her and Clorox wipes. My mom was very pleased to get out; change of scenery, change of food.
The stores are cleaned out of hand sanitizer, paper and plastic plates and silverware, and, of course, water. The state of emergency that is in effect means water is being brought into town for distribution.
I will be heading to my brother's house tomorrow for a shower and perhaps carrying along all the dishes that need to be washed that are in the dishwasher.
My mom is napping now; definitely a bit tired out. But she looks good. She is eating well; her C. diff symptoms seem to be gone (good thing, since she can't even wash her hands properly right now). She has a layer of fuzz on her head, and I see that she is playing bridge again on her IPad. She struggled with concentration for quite some time and wasn't able to do this.
Just another adventure in the life of a stem cell transplant patient.
My mom is wearing one of the new hats I made her today.
I came for a visit yesterday, coming from New Jersey, and my brother was coming in from Ohio for a family dinner. However, a water main break in my parents' town that started as a "boil water" order, and my bother and I bringing lots of drinking water with us, turned into a "no water at all" event.
So think, for just a moment, about that. No water. At all. Very tricky. As it turns out, this will go on for a few weeks while the line is being repaired, the reservoirs are filled, and the water is tested.
I was already well on my way with 20 gallons of water in my trunk. My brother didn't come, and we were all very disappointed to miss a chance to have an evening together. This also meant that my mom had done some food prep before the water ran out, so a sink of dirty dishes.
Because of my mom, a bit more care has to be taken ... clearly. There is Purell in every room. We have to take care to keep surfaces clean, and, once the snow melts, keep tubs of water covered.
My Dad and I spent some time shoveling snow IN to the house and filling tubs. I even melted several pots of snow on the stove to add speed up the melting process.
- water and tubs of snow.jpg (37.28 KiB) Viewed 548 times
Snow takes a LONG time to melt on its own.
- Snow soup, anyone?
- Snow soup.jpg (40.92 KiB) Viewed 548 times
I will be cutting my trip short as not to stress the system any more than necessary. This morning, we all got in the car and went out to a restaurant in a town 30 minutes away. This was my mom's first outing. We brought a bottle of water for her and Clorox wipes. My mom was very pleased to get out; change of scenery, change of food.
The stores are cleaned out of hand sanitizer, paper and plastic plates and silverware, and, of course, water. The state of emergency that is in effect means water is being brought into town for distribution.
I will be heading to my brother's house tomorrow for a shower and perhaps carrying along all the dishes that need to be washed that are in the dishwasher.
My mom is napping now; definitely a bit tired out. But she looks good. She is eating well; her C. diff symptoms seem to be gone (good thing, since she can't even wash her hands properly right now). She has a layer of fuzz on her head, and I see that she is playing bridge again on her IPad. She struggled with concentration for quite some time and wasn't able to do this.
Just another adventure in the life of a stem cell transplant patient.
-
Leealli - Name: Allison
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 70
Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park
Day 87
After a 4-week break, my mom was back at Roswell today.
Yesterday, my parents drove to Buffalo and stayed in a hotel overnight. My mom commented how easy it is to pack when you don't even have to think about bringing a comb!
The test started at 8 am this morning with 22 vials of blood taken, a pulmonary function test, 24-hour urine, skeletal survey, dexa scan and a bone marrow biopsy. It was a long day, and she was very tired. They were back on the road at 3 pm.
Now we wait to go back on Day 101 to meet with the bone marrow doctor for the final time for what he calls "re-staging". After this, she is (in his words) turned back over to the oncologist who we last saw in November after the final round of chemo.
Continuing down the road.
After a 4-week break, my mom was back at Roswell today.
Yesterday, my parents drove to Buffalo and stayed in a hotel overnight. My mom commented how easy it is to pack when you don't even have to think about bringing a comb!
The test started at 8 am this morning with 22 vials of blood taken, a pulmonary function test, 24-hour urine, skeletal survey, dexa scan and a bone marrow biopsy. It was a long day, and she was very tired. They were back on the road at 3 pm.
Now we wait to go back on Day 101 to meet with the bone marrow doctor for the final time for what he calls "re-staging". After this, she is (in his words) turned back over to the oncologist who we last saw in November after the final round of chemo.
Continuing down the road.
-
Leealli - Name: Allison
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 70
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