Hi all,
It has been a while since I sent out an update on Mary. She is doing well. The Dr's are expecting to declare a graft any day now. She is at day 27 and is still doing the roller coaster with her blood results. They need 3 days of increasing white blood cell numbers to make an official graft diagnosis.
Everything she has been encountering has been pretty standard with the gastrointestinal issues, mucositis, pneumonia, difficulty breathing (fluid overload), and low blood counts. She had a couple of hours where she thought this might be the end because she just could not get a breath. It had the Medical staff all worked up as well. This was due to having pneumonia and fluid overload at the same time. Corrections have been made and they are watching her fluid intake/output diligently. She has been suffering some anxiety since then but is working through it. She was throwing up blood a few days ago but that could be because the sores from the mucositis are sloughing off and bleeding as they begin to heal. She has also starting to cough/sneeze which could be an allergic reaction since she is starting to see some white blood cell counts or possibly a cold/flu.
The next big hurdle is Graft vs. Host Disease (GVHD). Mary has been treated with immuno-suppressive drugs since before the transplant and has not had any serious illnesses or side effects so we are crossing our fingers that things will continue to go well. A mild case of GVHD is desired since it helps kill any residual bone marrow and any lingering leukemia cells. The problems arise when it is a moderate to severe case attacking organs like the eyes, liver, kidneys, lungs and heart. The benefit of a stem cell transplant is that the side effects are generally on the more mild side. See info below for more information.
I am predicting that Mary will be home before Christmas. That doesn't mean she won't be hospitalized for periodic stays over the next few months. The medical staff has indicated that it is very normal to be in and out for several months just for observation and treatment especially since it is cold and flu season. Mary will have to be admitted any time she has a temp of 100 or higher and for congestion and/or sinus issues. This is due to being on the immunosuppressant drugs and not being able to fight off anything viral, bacterial or fungal for a while.
She is currently off oxygen, pain medications and they are weaning her off her IV meds and changing to oral in preparation for going home. Currently she is on about a dozen IV medications and half a dozen oral medicatonss. There has been some discussion of discharge already. I am being trained to change her dressing for her central line and I already have been giving her the shots she needs when I am there.
One thing I have noticed during her treatment is that she has not developed the gray pallor that so many of the patient here exhibit. I am very grateful that she has remained so healthy during this part of the treatment.
An interesting bit of news - a week or so ago we were notified that there was a national shortage of TPN (total parenteral nutrition) or meal-in-a-bag as we call it. What an odd thing to be short on. We joked a lot about people hording it for their food storage. Whatever the reason Mary has been reduced to a 12 hour IV meal instead of 24 hour meal so she has had to make up those extra calories through oral intake. This has been good to prepare her intestinal track for normal nutrition and she actually ate cantaloupe yesterday and kept it down. I do not even remember the last time she ate more than a spoonful of food at a time, it has been so long. The biggest success is that she has actually had 2 days in the last week, not in a row unfortunately, where she has not thrown up. This is a big, BIG, improvement.
We had a great Thanksgiving week. After the breathing scare I spent the next week having a pajama party with her. Luckily this was over the Thanksgiving holiday and the guest bed at the hospital is not nearly as uncomfortable as the one at Huntsman was. I was able to spend all my time with her until they were able to get things under control and that eased my concerns and hers considerably. We were blessed that they closed the University early that day for weather (weather that oddly enough did not live up to the expectation) so I was there for her. This is just one more example of the miracles that God has blessed us with since this all began - miracles that we probably would never have recognized otherwise.
It has been a while since I sent out an update on Mary. She is doing well. The Dr's are expecting to declare a graft any day now. She is at day 27 and is still doing the roller coaster with her blood results. They need 3 days of increasing white blood cell numbers to make an official graft diagnosis.
Everything she has been encountering has been pretty standard with the gastrointestinal issues, mucositis, pneumonia, difficulty breathing (fluid overload), and low blood counts. She had a couple of hours where she thought this might be the end because she just could not get a breath. It had the Medical staff all worked up as well. This was due to having pneumonia and fluid overload at the same time. Corrections have been made and they are watching her fluid intake/output diligently. She has been suffering some anxiety since then but is working through it. She was throwing up blood a few days ago but that could be because the sores from the mucositis are sloughing off and bleeding as they begin to heal. She has also starting to cough/sneeze which could be an allergic reaction since she is starting to see some white blood cell counts or possibly a cold/flu.
The next big hurdle is Graft vs. Host Disease (GVHD). Mary has been treated with immuno-suppressive drugs since before the transplant and has not had any serious illnesses or side effects so we are crossing our fingers that things will continue to go well. A mild case of GVHD is desired since it helps kill any residual bone marrow and any lingering leukemia cells. The problems arise when it is a moderate to severe case attacking organs like the eyes, liver, kidneys, lungs and heart. The benefit of a stem cell transplant is that the side effects are generally on the more mild side. See info below for more information.
I am predicting that Mary will be home before Christmas. That doesn't mean she won't be hospitalized for periodic stays over the next few months. The medical staff has indicated that it is very normal to be in and out for several months just for observation and treatment especially since it is cold and flu season. Mary will have to be admitted any time she has a temp of 100 or higher and for congestion and/or sinus issues. This is due to being on the immunosuppressant drugs and not being able to fight off anything viral, bacterial or fungal for a while.
She is currently off oxygen, pain medications and they are weaning her off her IV meds and changing to oral in preparation for going home. Currently she is on about a dozen IV medications and half a dozen oral medicatonss. There has been some discussion of discharge already. I am being trained to change her dressing for her central line and I already have been giving her the shots she needs when I am there.
One thing I have noticed during her treatment is that she has not developed the gray pallor that so many of the patient here exhibit. I am very grateful that she has remained so healthy during this part of the treatment.
An interesting bit of news - a week or so ago we were notified that there was a national shortage of TPN (total parenteral nutrition) or meal-in-a-bag as we call it. What an odd thing to be short on. We joked a lot about people hording it for their food storage. Whatever the reason Mary has been reduced to a 12 hour IV meal instead of 24 hour meal so she has had to make up those extra calories through oral intake. This has been good to prepare her intestinal track for normal nutrition and she actually ate cantaloupe yesterday and kept it down. I do not even remember the last time she ate more than a spoonful of food at a time, it has been so long. The biggest success is that she has actually had 2 days in the last week, not in a row unfortunately, where she has not thrown up. This is a big, BIG, improvement.
We had a great Thanksgiving week. After the breathing scare I spent the next week having a pajama party with her. Luckily this was over the Thanksgiving holiday and the guest bed at the hospital is not nearly as uncomfortable as the one at Huntsman was. I was able to spend all my time with her until they were able to get things under control and that eased my concerns and hers considerably. We were blessed that they closed the University early that day for weather (weather that oddly enough did not live up to the expectation) so I was there for her. This is just one more example of the miracles that God has blessed us with since this all began - miracles that we probably would never have recognized otherwise.
So things are good and looking up every day. We are blessed to live in a time where there is treatment for leukemia as well as all the side effects to the treatment. We have the love and support from family and friends that keep us in their prayers and thoughts and that is worth more than anything else.
Thank you all for everything. We could not do this without you and a loving Father in Heaven and Savior, Jesus Christ.
Happy Holidays,
Love Debbi and Mary.
Mucositis
Mucus-producing tissue lines the mouth, nose, sinuses, throat, lungs and gastrointestinal tract. Mucus acts as a protective blanket over these surfaces, preventing the tissue underneath from drying out. The injury of the mucosal lining of the mouth and throat and is a common regimen-related toxicity following chemo-therapy and total body irradiation regimens. It is usually not life-threatening but is very painful, and prevents eating and drinking. Mucositis is treated with pain medications plus intravenous infusions to prevent dehydration and malnutrition.
Graft-versus-host disease (GVHD)
GVHD is an inflammatory disease that is unique to allogeneic transplantation. It is an attack of the "new" bone marrow's immune cells against the recipient's tissues. This can occur even if the donor and recipient are HLA-identical because the immune system can still recognize other differences between their tissues. It is aptly named graft-versus-host disease because bone marrow transplantation is the only transplant procedure in which the transplanted cells must accept the body rather than the body accepting the new cells. Acute graft-versus-host disease typically occurs in the first 3 months after transplantation and may involve the skin, intestine, or the liver, and is often fatal. High-dose corticosteroids such as prednisone are a standard treatment; however this immuno-suppressive treatment often leads to deadly infections. Chronic graft-versus-host disease may also develop after allogeneic transplant. It is the major source of late treatment-related complications, although it less often results in death. In addition to inflammation, chronic graft-versus-host disease may lead to the development of fibrosis, or scar tissue, similar toscleroderma; it may cause functional disability and require prolonged immunosuppressive therapy.
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