I don't know how many people are even looking at this blog, anymore, but, as Debbi is too busy and Mary too sick to update it, I thought I would take a moment to write a little about how Mary is doing.
Mary had her second stem cell transplant (as opposed to a bone marrow transplant) on July 1st. Her new immune system has grafted, meaning that she is making her own white blood cells, but she is still in the hospital. Now they have to manage what is called graft versus host disease (GVHD). GVHD is basically keeping her new immune system from attacking her original healthy cells, and still letting it attack and kill the cancer cells. A tricky balance, to say the least.
Mary has had many ups and downs during this process, but right now is definitely at a down point. She had a colonoscopy last week and had to consume a large amount of liquid, which her kidneys have not been able to process and remove from her body. This has caused her to have a harder time breathing, as she has so much fluid in her body.
Today, Mary had her first round of dialysis to help clean her blood and hopefully take the pressure off of her kidneys so they will be able to manage the job they need to be doing. We don't know if she will have to continue to have dialysis, but our prayer is that her kidneys will work on their own, obviously. We are also hopeful that the decrease in fluid will help Mary to breathe more easily.
Mary was anointed and blessed to regain her health, today. We have faith that is what is going to happen.
Of the last 12 months, Mary has spent more than 9 months in the hospital for one reason or another. This has been very difficult for her and for Debbi, who has been there every day for Mary and still continued to work full time. They could use and would appreciate any prayers on their behalf.
As far as I know, they are not in need of any other help at this time. If you plan to visit Mary in the hospital, please be aware that she tires very easily and she is NOT a morning person. Please do not go early in the morning to see her, late morning at the earliest would be best. And please make your visit short. She does not have the energy to entertain people for long visits.
There has been some talk of holding a fundraising dinner, but nothing has been planned at this time. When such an event happens, I will try to remember to post the information here.
Thanks for continuing to pray for Mary and Debbi.
(Everything in this post is my understanding and opinion, if there are inaccuracies or miscommunications, the fault is totally mine.)
Sonja
Sunday, August 21, 2011
Monday, June 20, 2011
| Hi all, The blessing for Mary has been moved to 6:30 pm, Tuesday June 21, (tomorrow) at my parents home in Bluffdale: 2555 W 15000 S Bluffdale, UT 84065 Be advised the 15000 south is blocked from Camp Williams Road (Redwood Road) Here is a funny story...(picture attached) On Friday, Mary was transfused with several bags of blood products so she could have her spinal tap for her upcoming transplant. The Dr's started her last bag of platelets right before they had her curl up like a potato bug. After the spinal tap was over and Mary could straighten up, she poked her head out and said "I think I am having an allergic reaction. Do I look like Hitch?" Once it was confirmed that she definitely was doing a EXCELLENT job of an impersonation she was rather excited to get a look in the mirror to confirm for herself the look-a-like aspect. Sometimes the Hospital does not offer sufficient entertainment and you have to get it where you can.  Cheers, Deb |
Update 6/17/2011
Hi all,
It has been a while since my last email about Mary. Things have been moving along behind the scenes. Her previous transplant was considered a graft failure and they have been looking for a LIVE donor. They have found one. We do not have any of the specifics on who/where/what yet but will probably have that information on Tuesday when we have the admit consultation.
She has been having chemo treatments about every 5-6 weeks since the leukemia came back to keep it at bay. She has also been in the hospital for infections twice in the last 30 days. 10 months is a long time to be without an immune system and her body is wearing down.
She will be admitted to the University of Utah Hospital (UUH) either on Wednesday or Thursday of next week and start the transplant process again. The Chemo regiment is different than before but she will have Chemo and Total Body Irradiation (TBI) for a week then the transplant.
Currently she is at Huntsman Cancer Hospital (HCH) fighting a few infections and it is hopeful that they will let her out this weekend to spend Father's Day at home. If not she will go directly to UUH from HCH.
I would like her to have a priesthood blessing on Tuesday night at 7:00 pm wherever she is. I would like to invite all that would like to participate to join us.
Many have asked what her chances are. The Dr's said it is less that her 50/50 chance the first time around. The truth is that it is whatever Heavenly Father decides. She has had blessing in the past that have promised her recover because it was not her time to go. I have faith in my Heavenly Father that what happens is his will. I have no reason to doubt his wisdom and love. If you can keep her in your thoughts and prayers we would appreciate it.
Love always
Deb
It has been a while since my last email about Mary. Things have been moving along behind the scenes. Her previous transplant was considered a graft failure and they have been looking for a LIVE donor. They have found one. We do not have any of the specifics on who/where/what yet but will probably have that information on Tuesday when we have the admit consultation.
She has been having chemo treatments about every 5-6 weeks since the leukemia came back to keep it at bay. She has also been in the hospital for infections twice in the last 30 days. 10 months is a long time to be without an immune system and her body is wearing down.
She will be admitted to the University of Utah Hospital (UUH) either on Wednesday or Thursday of next week and start the transplant process again. The Chemo regiment is different than before but she will have Chemo and Total Body Irradiation (TBI) for a week then the transplant.
Currently she is at Huntsman Cancer Hospital (HCH) fighting a few infections and it is hopeful that they will let her out this weekend to spend Father's Day at home. If not she will go directly to UUH from HCH.
I would like her to have a priesthood blessing on Tuesday night at 7:00 pm wherever she is. I would like to invite all that would like to participate to join us.
Many have asked what her chances are. The Dr's said it is less that her 50/50 chance the first time around. The truth is that it is whatever Heavenly Father decides. She has had blessing in the past that have promised her recover because it was not her time to go. I have faith in my Heavenly Father that what happens is his will. I have no reason to doubt his wisdom and love. If you can keep her in your thoughts and prayers we would appreciate it.
Love always
Deb
Tuesday, March 1, 2011
Update 3/1/11
OK - I am sure everyone is "dying" to hear what the treatment options are so here you go:
Death = ok so that isn’t really a treatment or an option we are considering so moving on…
Start the process all over again… DÉJÀ VU…I think I have been through this too many times already, but I guess not.
Mary will be admitted to Huntsman Cancer Hospital for another chemo round later this week. We were told to expect at least another 6 weeks inpatient care. This is to keep the leukemia at bay. After the chemo the hope is that her new cells will recover quicker than the old and it will fight off the cancer. If recovery does not happen then they will consider it a graft failure and she will need another bone marrow transplant. They are working on a match right now so in the case that the graft does fail they are ready.
Top 10 reasons why starting over is going to be GREAT!!! BY MARY and Deb
11. When I lose my hair I can request a different color again - I think green would be nice. (we had more than 10 reasons)
10. I get to see all my old friends again, home away from home.
9. I get a 5 star hospital room with room service and my own personal maid.
8. I don’t have to answer the phone if I don’t want to – because I have cancer.
7. I can fake sleeping when visitors come and won’t leave and it isn’t rude.
6. The food is outstanding and I can choose what and when I want to eat and then I can taste it all over again when it comes back out (until of course my taste buds go weird again).
5. I get to lounge around in my pajamas all day – Oh I do that already.
4. Cable, presents and control of the remote.
3. My own bathroom – and I don’t have to measure EVERYTHING exiting my body!!!
2. I have already paid most of the out of pocket expenses for my insurance coverage this year so it is like a bounce back pass at LAGOON…WEEEEEEEEE.
1. My super powers have diminished lately and I need an infusion so I can continue to projectile vomit spider web mucus again – like a Llama.
We are doing very well or maybe bad depending on what you think of our top ten list (maybe we need more medication…). We have already chosen our next musical feat to work on in the hospital. For any of you that have missed our songs they are posted here on Mary's blog.
Friday, February 25, 2011
Update 2/25/11
Hi all,
Mary gets to play survivor one more time – only she isn’t trying to outwit, out play, out last for a million dollars and title of survivor – I think she is trying to rack up a million dollar medical bill to go with her “Survivor“ title – lol. Her leukemia has returned which is a set-back but not a complete blindside. We were told very early on that this type of cancer was very aggressive and resistant to treatment.
Some have asked how this has happened – if the stem cells grafted she should be healed…well it is similar to planting a seed…
You prepare the field then plant the seed. You weed and water till the plant takes root and is stronger than the weeds and can survive and flourish. Mary had the cells planted but they are still taking root and even though she is grafted the old marrow is still around and has not been completely eradicated. We were told that the leukemia would return and the only option was a transplant. We were hopeful that the transplant would have more time for the new cells to flourish.
So what comes next… well normally at this point in the treatment she would be weaned off the immunosuppressant’s over a 3-6 month time frame so that the new bone marrow could slowly take over without an overwhelming attack on the body, kind of easing into the take-over…but with this new development she will be taken of the immunosuppressant’s very quickly, with-in a week, in the hopes that the new bone marrow will become very aggressive and fight off the cancer… this does open her up to the possibility that she will see additional complications from the internal struggle going on.
We will meet with the transplant team and oncology team on Tuesday afternoon to discuss what the treatment plan will be. It will possibly involve some chemo to keep the leukemia cells under control and the possibility of a second transplant if the current one has not had time to strengthen enough to withstand this onslaught.
How are we doing??? Well, we are a bit emotional over this, but Mary wisely pointed out that this is not a Zombie Apocalypse so things are still manageable. We have already selected our hats for Tuesday’s meeting and we intend to show them that we are not beaten and still have a sense of humor.
We have discussed why she has not been healed since that has been promised to her. The conclusion we came to is that sometimes we need bigger miracles than just being healed. It would be easy if everything fell into place and zip zap it was all over…well not exactly zip zap in this case. Sometimes the Lord expects us to endure for a season so that certain lessons can be learned and promises fulfilled not just for us but all those around us as well. We do know that the Lord has “prepared a way” for us to meet this test and we will have everything we need when we need it so when it is time we can return to his loving arms and he can tell us “Well done”.
As always we would not have been able to make it this far without the support of our family and friends. You are all critical to our survival and we love you so much for your efforts on our behalf. We only hope that one day we can return the favor and be the same kind of support for each of you.
Love,
Deb
Friday, January 14, 2011
Update 1/14/11
| Mary is being released from the hospital today. I am heading up there now to pack her up and bring her home. What a great way to spend the holiday weekend. Love, Deb |
Wednesday, December 8, 2010
Update 12/8/2010
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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