Hello all, and thank you for the amazing advice and support on this board.
My husband "R" and I have been "lurkers" since he was unexpectedly diagnosed at just barely 43 years old with IgG lambda multiple myeloma, classified as stage 1 R-ISS, in February of this year. His only symptom was nagging shoulder pain that didn't go away after 18 months of physical therapy and various treatments, and it turned out to be a 5 cm plasmacytoma in his upper right rib cage. There is also a smaller 2 cm lesion in his sinus, but thankfully no organ impairment or high-risk features (at least for now), and two bone marrow biopsies showed between 5-10% involvement. R also has been managing moderate to severe Crohn's disease since 1993, which - we thought - was tough enough.
We are obviously devastated and absolutely reeling from the multiple myeloma news, especially since we have a toddler. However, R is under great care at MD Anderson, and after three months on Kyprolis, Revlimid, and dexamethasone (KRD) induction, his M-spike is down to 0.1 g/dL from 1.5 g/dL; and free light chains, etc. are all in normal range now. (The plasmacytomas haven't reduced significantly, however.)
He's preparing for a stem cell transplant at MD Anderson next month, followed by radiation. However, because of R's young age and the fact we have a three year old at home, we're struggling to find others who can help us anticipate life with very young kids once he is back and how to protect him in recovery. I work full-time and our son is in daycare, which means I think we will need to do things like wash hands and change clothes immediately upon coming home, have R wear a mask, and send our son to his grandparents if he shows even the slightest symptom of being ill.
I see that often the recommendation is to not be around children for 2-3 months after a stem cell transplant, and that's definitely not going to be possible in our case (though R will be inpatient and away from our son for the first month of the transplant).
He is hoping to be back at work full-time in two months post-SCT. It's also hard to predict his energy level and his ability to interact with our son, and how that will be affected long-term. Not to mention the permanent state of a weakened immune system!
But, if anyone else has been in a similar situation and has advice to share, it would be much appreciated.
We're praying for longer than the 10 years overall survival median, for sure. Thank you in advance.
Forums
-
texgal79 - Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2016
- Age at diagnosis: 43
Re: Transplant & recovery with very young children at home
Hello Texgal:
When my wife was diagnosed with MGUS, our youngest was under 10 years old, so we do not have the exact same situation as yourself. Families have a way of working these things out. My wife and I are both amazed at the way our children are always thinking of supporting their mom with her issues.
The big issue for your husband would potentially be if your toddler is at a pre-school, and the regular viruses were running through the school, and the toddler brought that home when your husband was just out of the hospital. Not wonderful. However, the joy that a young child would bring to the house also has an effect, I think.
Three rounds of KRD to get to a near complete response, I think is a very good sign, and I wish you the best. Don't worry if it might take a little bit more than two months to return to work. I would not rush that one, but if he "skates" through the stem cell transplant, it could possibly pan out. I have researched the best players and MD Anderson, for sure, is on that list. Good luck.
When my wife was diagnosed with MGUS, our youngest was under 10 years old, so we do not have the exact same situation as yourself. Families have a way of working these things out. My wife and I are both amazed at the way our children are always thinking of supporting their mom with her issues.
The big issue for your husband would potentially be if your toddler is at a pre-school, and the regular viruses were running through the school, and the toddler brought that home when your husband was just out of the hospital. Not wonderful. However, the joy that a young child would bring to the house also has an effect, I think.
Three rounds of KRD to get to a near complete response, I think is a very good sign, and I wish you the best. Don't worry if it might take a little bit more than two months to return to work. I would not rush that one, but if he "skates" through the stem cell transplant, it could possibly pan out. I have researched the best players and MD Anderson, for sure, is on that list. Good luck.
-
JPC - Name: JPC
Re: Transplant & recovery with very young children at home
Hi Texgal79,
About 5 weeks after my transplant, I returned home and at the time my daughter and her 3 year old son were living with us. He attends daycare too. We practiced hand washing (counting to 20 or saying the ABC's) and kept hand sanitizer available in several rooms. I also only used my master bath and changed the towels daily. My grandson used his own hand towel and bathed in his own bathroom. I ran an air purifier in my bedroom and in our living room area. I still run the air purifier in my bedroom but not in the living room.
My doctor said hand washing is the best precaution and keeping hands away from the mouth, nose, and eyes.
He did get sick a couple times and I kept my distance from him. We would not be in the same room and he would also be seen by a doctor when needed. I used Lysol wipes, constantly wiping down all areas of concern. I did come down with a cold twice and had to be put on antibiotics due to a slight fever, but I lucked out and didn't need further treatment.
I agree with JPC. He seems to have responded to treatment real well. I wish your both the best!
Rhonda
About 5 weeks after my transplant, I returned home and at the time my daughter and her 3 year old son were living with us. He attends daycare too. We practiced hand washing (counting to 20 or saying the ABC's) and kept hand sanitizer available in several rooms. I also only used my master bath and changed the towels daily. My grandson used his own hand towel and bathed in his own bathroom. I ran an air purifier in my bedroom and in our living room area. I still run the air purifier in my bedroom but not in the living room.
My doctor said hand washing is the best precaution and keeping hands away from the mouth, nose, and eyes.
He did get sick a couple times and I kept my distance from him. We would not be in the same room and he would also be seen by a doctor when needed. I used Lysol wipes, constantly wiping down all areas of concern. I did come down with a cold twice and had to be put on antibiotics due to a slight fever, but I lucked out and didn't need further treatment.
I agree with JPC. He seems to have responded to treatment real well. I wish your both the best!
Rhonda
-
Rhonda - Who do you know with myeloma?: myself
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 54
Re: Transplant & recovery with very young children at home
JPC and Rhonda,
Thank you so much for sharing your experiences and for the encouragement.
JPC, you are quite right about the "joy" effect. He keeps us smiling and helps us forget about multiple myeloma. But he is also in daycare/preschool and brought home a few bugs this past year. So it sounds like lots of hand-washing and perhaps some air purifiers in our future!
Thank you so much for sharing your experiences and for the encouragement.
JPC, you are quite right about the "joy" effect. He keeps us smiling and helps us forget about multiple myeloma. But he is also in daycare/preschool and brought home a few bugs this past year. So it sounds like lots of hand-washing and perhaps some air purifiers in our future!
-
texgal79 - Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2016
- Age at diagnosis: 43
Re: Transplant & recovery with very young children at home
Hi Texgal,
My children were 6 and 4 when I had my stem cell transplant. My recovery would have been a lot slower in my opinion without them. They made me get out of bed and get moving when I otherwise didn't feel like it. They helped me not be self absorbed by reminding me that this multiple myeloma affects not only me.
As for germs and infections, when I was in hospital and my immunity was at it's lowest. I put on a self imposed no visitor rule. When I got home, as long as the kids were well, everything was status quo. If they were even slightly off colour, I had to avoid close contact. Not avoid them entirely, just be cautious.
I assume your hubby will be on Intragram (IVIG, intravenous IgG), which will help greatly with his immunity.
Try not to get over the top with it all.
Vic
My children were 6 and 4 when I had my stem cell transplant. My recovery would have been a lot slower in my opinion without them. They made me get out of bed and get moving when I otherwise didn't feel like it. They helped me not be self absorbed by reminding me that this multiple myeloma affects not only me.
As for germs and infections, when I was in hospital and my immunity was at it's lowest. I put on a self imposed no visitor rule. When I got home, as long as the kids were well, everything was status quo. If they were even slightly off colour, I had to avoid close contact. Not avoid them entirely, just be cautious.
I assume your hubby will be on Intragram (IVIG, intravenous IgG), which will help greatly with his immunity.
Try not to get over the top with it all.
Vic
-
vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: Transplant & recovery with very young children at home
Hi Texgal,
I was in a very similar position to R in that I was 40 when I had my stem cell transplant in January this year, and had very similar plasmacytoma involvment. I also returned home to my wife and 3 children, the youngest of which was 2 and in day care 4 days per week.
I can only echo the same points as other members, in that hygiene and hand washing play a huge roll in the success of your return to normal, but after spending 17 days away from my family as an inpatient, the positive effect that my children had on my recovery far outweighed the potential threat of infections.
I did however avoid pick up and drop off at child care for at least 2 months, and we kept masks on hand for me to wear if anyone in our family even looked like they were mildly sick.
One thing I will say is that R will have very low energy levels when he returns home and may feel like he is letting the family down by not being able to keep up with the demands of having young children at home.
I found that daily moderate exercise and patience were the key, along with good nutrition.
Wishing you a smooth road and strong recovery.
I was in a very similar position to R in that I was 40 when I had my stem cell transplant in January this year, and had very similar plasmacytoma involvment. I also returned home to my wife and 3 children, the youngest of which was 2 and in day care 4 days per week.
I can only echo the same points as other members, in that hygiene and hand washing play a huge roll in the success of your return to normal, but after spending 17 days away from my family as an inpatient, the positive effect that my children had on my recovery far outweighed the potential threat of infections.
I did however avoid pick up and drop off at child care for at least 2 months, and we kept masks on hand for me to wear if anyone in our family even looked like they were mildly sick.
One thing I will say is that R will have very low energy levels when he returns home and may feel like he is letting the family down by not being able to keep up with the demands of having young children at home.
I found that daily moderate exercise and patience were the key, along with good nutrition.
Wishing you a smooth road and strong recovery.
-
stu1975 - Name: Stu1975
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2015
- Age at diagnosis: 38
Re: Transplant & recovery with very young children at home
Hello Texgal,
We have a 3 year old and a 7 year old, in daycare / school five days a week. I went through my first auto stem cell transplant in April this year as an inpatient, and came home after two weeks post transplant.
During induction chemo and radiation (I also had a plasmacytoma, and radiation was successful) I had fever a couple of times, and was hospitalized with pneumonia and sepsis, but after the stem cell transplant, I have not had fever again.
My youngest one sleeps in the same bed as me, and did so also when she had a fever a few weeks after my return home. I never wore a mask, but we all wash our hands regularly – when we come home, and before meals, and a thousand times in between! I use my own towels, as it is difficult to make my daughter use a specific one.
The first two months after transplant I avoided daycare and school, and if we had heard of an outbreak at daycare, we had decided to keep our daughter at home. I have avoided places with lots of people, but already while still at the hospital I went for walks to the supermarket at an hour when there are not a lot of people.
Maybe I was just lucky, but my doctors have told me that patients usually get ill from bacteria / viruses that we already have in our bodies, but that normally don't outbreak as our immune systems take care of it.
What was most difficult is that my three year old wants to be close to me at all times, also when my pain and fatigue is overwhelming, and my husband just can't help. I think it is her reaction to what has happened, and she needs to feel safe and know that I won't just leave her. She even came with me to radiation therapy several times, sitting in the car for the 200 km (120 mile) daily drive.
At the same time as it is tough for everyone in your family, I also agree completely with the other posters – having a young child at home helps recovery rather than the other way around.
Best of luck to you and your family.
We have a 3 year old and a 7 year old, in daycare / school five days a week. I went through my first auto stem cell transplant in April this year as an inpatient, and came home after two weeks post transplant.
During induction chemo and radiation (I also had a plasmacytoma, and radiation was successful) I had fever a couple of times, and was hospitalized with pneumonia and sepsis, but after the stem cell transplant, I have not had fever again.
My youngest one sleeps in the same bed as me, and did so also when she had a fever a few weeks after my return home. I never wore a mask, but we all wash our hands regularly – when we come home, and before meals, and a thousand times in between! I use my own towels, as it is difficult to make my daughter use a specific one.
The first two months after transplant I avoided daycare and school, and if we had heard of an outbreak at daycare, we had decided to keep our daughter at home. I have avoided places with lots of people, but already while still at the hospital I went for walks to the supermarket at an hour when there are not a lot of people.
Maybe I was just lucky, but my doctors have told me that patients usually get ill from bacteria / viruses that we already have in our bodies, but that normally don't outbreak as our immune systems take care of it.
What was most difficult is that my three year old wants to be close to me at all times, also when my pain and fatigue is overwhelming, and my husband just can't help. I think it is her reaction to what has happened, and she needs to feel safe and know that I won't just leave her. She even came with me to radiation therapy several times, sitting in the car for the 200 km (120 mile) daily drive.
At the same time as it is tough for everyone in your family, I also agree completely with the other posters – having a young child at home helps recovery rather than the other way around.
Best of luck to you and your family.
-
Myosotis - Who do you know with myeloma?: myself
- When were you/they diagnosed?: November 2015
- Age at diagnosis: 37
Re: Transplant & recovery with very young children at home
Myosotis, Stu1975 and Vicstir:
We are very grateful to you for posting about your respective experiences in these situations that we can relate to. And certainly relieved to hear how well it seems all your recoveries seem to have gone, even with germ-y yet adorable little petri dishes at home!
Very good suggestions about avoiding daycare drop-off and pick-up, and keeping towels and linens separate. Myosotis, our little one is very much in the clingy "mama" stage, so my heart goes out to you knowing how hard that must be as a mother when you aren't feeling well.
Vic, we had heard about IVIG, but only secondhand; we'll be sure to ask the transplant team and R's myeloma specialist about doing this afterwards. Another thing that is striking is the plasmacytoma presentations you all mentioned. We haven't come across too many other multiple myeloma patients where the plasmacytomas were the primary symptom (or any, personally, really.). R didn't have any markers even in regular physicals that were picked up until the pain eventually got us to an MRI. I wonder if it is something unique about the immune system suppressing other multiple myeloma markers in younger patients but the cells that cause plasmacytoma growth winning out.
We are very grateful to you for posting about your respective experiences in these situations that we can relate to. And certainly relieved to hear how well it seems all your recoveries seem to have gone, even with germ-y yet adorable little petri dishes at home!
Very good suggestions about avoiding daycare drop-off and pick-up, and keeping towels and linens separate. Myosotis, our little one is very much in the clingy "mama" stage, so my heart goes out to you knowing how hard that must be as a mother when you aren't feeling well.
Vic, we had heard about IVIG, but only secondhand; we'll be sure to ask the transplant team and R's myeloma specialist about doing this afterwards. Another thing that is striking is the plasmacytoma presentations you all mentioned. We haven't come across too many other multiple myeloma patients where the plasmacytomas were the primary symptom (or any, personally, really.). R didn't have any markers even in regular physicals that were picked up until the pain eventually got us to an MRI. I wonder if it is something unique about the immune system suppressing other multiple myeloma markers in younger patients but the cells that cause plasmacytoma growth winning out.
-
texgal79 - Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2016
- Age at diagnosis: 43
Re: Transplant & recovery with very young children at home
Texgal,
Best of luck with the transplant! I don't have any advice but am cheering your family on as we prepare for my husband's allogeneic (donor) transplant this month. We also have a young child (seven years old) at home, and it seems very overwhelming to imagine how to juggle my husband's medical needs along with our child's needs. It will be difficult to be separated during the two months he is expected to be in the hospital, but the 24/7 caregiving when he comes home with daily appointments at the hospital will be logistically very difficult as well, as we don't have family who can take over childcare. We don't have anywhere to send our son if he becomes ill, and we live in a small one-bedroom apartment, so I have been worried about what would happen if one of us brought a virus home. It makes me feel better to hear that other people have managed to make it through that period without catching something serious from their child who goes out in the world. I too am hoping that the psychological benefit of being home with us will aid in the healing process.
Best of luck with the transplant! I don't have any advice but am cheering your family on as we prepare for my husband's allogeneic (donor) transplant this month. We also have a young child (seven years old) at home, and it seems very overwhelming to imagine how to juggle my husband's medical needs along with our child's needs. It will be difficult to be separated during the two months he is expected to be in the hospital, but the 24/7 caregiving when he comes home with daily appointments at the hospital will be logistically very difficult as well, as we don't have family who can take over childcare. We don't have anywhere to send our son if he becomes ill, and we live in a small one-bedroom apartment, so I have been worried about what would happen if one of us brought a virus home. It makes me feel better to hear that other people have managed to make it through that period without catching something serious from their child who goes out in the world. I too am hoping that the psychological benefit of being home with us will aid in the healing process.
-
mplsterrapin - Name: Ari
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Fall 2015
- Age at diagnosis: 54
Re: Transplant & recovery with very young children at home
Mplsterrapin -
Thank you for the kind wishes! It is certainly tough juggling a little one and full-time caregiving duties. Sounds like lots of hand-washing in our futures! I am sending you positive thoughts for a successful procedure and a healthy recovery. It sounds like the allogeneic transplants can do amazing things for long-term management of the disease, and it's good that your husband is young and has you in this fight with him.
Thank you for the kind wishes! It is certainly tough juggling a little one and full-time caregiving duties. Sounds like lots of hand-washing in our futures! I am sending you positive thoughts for a successful procedure and a healthy recovery. It sounds like the allogeneic transplants can do amazing things for long-term management of the disease, and it's good that your husband is young and has you in this fight with him.
-
texgal79 - Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2016
- Age at diagnosis: 43
12 posts
• Page 1 of 2 • 1, 2
Return to Treatments & Side Effects