Mary has had a very heavy schedule since she was released from the Hospital. She had to have blood work done every other day for the first 2 weeks and a weekly appointment with the Oncologist. Once her blood started to respond on its own she only had to have blood work done once a week.
I have like fifty flippin’ tests they want to do. Just on Wednesday I had to go to the gynecology lady (and that was just awkward, but kind of funny, the first thing she said to me after was that I was without a doubt a virgin…go me!), then a bone biopsy, then a spinal tap (just so you know, when your wife has to have a needle jabbed into her spine, when giving birth, be sensitive to the fact that it will hurt and they somehow want you to breath in deeply while sucking in your stomach….doesn’t make much sense does it?), then an echo, then an x-ray and by the time the day was over I was a sobbing shell of a human being. I spent the next two days sleeping.
Tuesday, January 7, 2020
Thursday, June 21, 2012
Thank you for coming to Mary's blog. We have neglected it for some time, as things have been up and down with Mary's health. It is hard to post "She is sick and in the hospital, again," only to follow it with "She is home and doing well, again." Mary had a rough year with her health continuing to decline and her fabulous doctors (no sarcasm, she had the best!) not knowing what was going on.
May 26th, Mary was having hard time breathing and Debbi took her to the ER. Mary was collecting fluid around her lungs and heart, again. It was pretty bad and they drained 1 1/2 liters off the left side of her body that night. They had to intubate her and hook her up to all kinds of machines and monitors. Then they transferred her to Huntsman's ICU.
Sunday was a difficult day, in which they did a lot of testing and Mary had lots of visitors. She wasn't able to speak to us, but was entertaining us all with writing her comments to us. She was her usual chipper and happy self. Same Mary. Same hospital. Different department (ICU at Huntsman is new and her last ICU visit was at the U).
Monday, the doctors told Mary that the fluid was due to GVHD and that they were not able to stop it from happening. They could prolong her life by keeping her on the machines and keeping her in the hospital, but that it was only a matter of time before the condition of her body would kill her. (She had many other issues that were contributing to very poor health.) Mary chose at that time to have the tubes and monitors removed and be put on comfort care (ie allowed to die).
The hospital made arrangements to move her to the BMT unit, where she and Debbi had spent so much time, as she was not supposed to live through Wednesday. (I will have to give more detail on what happened during this time, later. It is late and I have a busy weekend ahead of me.)
Thursday, when Mary was still alive, arrangements were made to send her home on hospice care. Debbi mentioned that she thought if Mary lived through the weekend, she might be able to go to the temple! (Mary's bishop and a member of the Stake Presidency had gone to the hospital to give Mary her temple recommend interviews and granted her recommends to get her live endowment done and to be able to visit the temple on Monday, May 28th, when she wasn't supposed to live more than two more days.)
Mary lived! Tuesday, June 5th, 2012 Mary went to the Oquirrh Mountain Temple to make sacred covenants with Heavenly Father. It was an amazing experience to be there with her. The temple held a special session for Mary. It was amazing!
Mary outlived all estimates of her longevity. She died when she was good and ready, and figured it out (She told her hospice RN, Scott, that she wanted to die, but couldn't figure out how!) We were very blessed to have the extra three weeks with Mary. She continued to teach us lessons on living during her dying. It was beautiful and something we will always treasure.
I will try to find some of the updates Debbi emailed and post them.
Here is the email she sent out last 6/17/2012:
May 26th, Mary was having hard time breathing and Debbi took her to the ER. Mary was collecting fluid around her lungs and heart, again. It was pretty bad and they drained 1 1/2 liters off the left side of her body that night. They had to intubate her and hook her up to all kinds of machines and monitors. Then they transferred her to Huntsman's ICU.
Sunday was a difficult day, in which they did a lot of testing and Mary had lots of visitors. She wasn't able to speak to us, but was entertaining us all with writing her comments to us. She was her usual chipper and happy self. Same Mary. Same hospital. Different department (ICU at Huntsman is new and her last ICU visit was at the U).
Monday, the doctors told Mary that the fluid was due to GVHD and that they were not able to stop it from happening. They could prolong her life by keeping her on the machines and keeping her in the hospital, but that it was only a matter of time before the condition of her body would kill her. (She had many other issues that were contributing to very poor health.) Mary chose at that time to have the tubes and monitors removed and be put on comfort care (ie allowed to die).
The hospital made arrangements to move her to the BMT unit, where she and Debbi had spent so much time, as she was not supposed to live through Wednesday. (I will have to give more detail on what happened during this time, later. It is late and I have a busy weekend ahead of me.)
Thursday, when Mary was still alive, arrangements were made to send her home on hospice care. Debbi mentioned that she thought if Mary lived through the weekend, she might be able to go to the temple! (Mary's bishop and a member of the Stake Presidency had gone to the hospital to give Mary her temple recommend interviews and granted her recommends to get her live endowment done and to be able to visit the temple on Monday, May 28th, when she wasn't supposed to live more than two more days.)
Mary lived! Tuesday, June 5th, 2012 Mary went to the Oquirrh Mountain Temple to make sacred covenants with Heavenly Father. It was an amazing experience to be there with her. The temple held a special session for Mary. It was amazing!
Mary outlived all estimates of her longevity. She died when she was good and ready, and figured it out (She told her hospice RN, Scott, that she wanted to die, but couldn't figure out how!) We were very blessed to have the extra three weeks with Mary. She continued to teach us lessons on living during her dying. It was beautiful and something we will always treasure.
I will try to find some of the updates Debbi emailed and post them.
Here is the email she sent out last 6/17/2012:
Hi all,
I just wanted to share with you all that Mary returned to her Heavenly Father last night shortly after 9:00 pm. It was a privilege and a pleasure to have been her mother. She has been a source or strength and courage to me on may occasion. She had a knowledge of the eternal nature of our mortal existence and was looking forward to being reunited with her earthly father and brother. I have felt her energy joy at being freed from this existence to join her ancestors in celebrating her return home. Happy Fathers Day Sterling!!! She is no longer bound by her physical body and rejoicing at being home again. Thank you all for your love and support through her trials. We love you all very much and wants you all to remember that families are eternal, our relationships here and how we treat others is the legacy we leave behind. Kiss your children, hug your siblings and love and honor your parents. Services will be this coming weekend, with a viewing on Friday and the funeral on Saturday.
Love always,
Debbi
Friday, October 7, 2011
Update 10/7/2011
Hi all,
It has been a while since I have sent out an update. We have been on a roller coaster ride for the last month not knowing what will happen. Conditions could change tomorrow or not - it is a little like the weather. We had 90 temps last week and this week we have had snow.
Mary was home for a few weeks. She was enjoying sleeping without constant interruptions and food. Her hair is growing in and her appetite is improving. Her kidneys, liver and spleen are slowly improving. She was having dialysis on Tuesday, Thursday and Saturday for 4-5 hours as well as blood testing and transfusions if needed on those days. She also had a doctor visit each week usually on Tuesday or Thursday.
Everything changed last week, when she developed a fever. We did a midnight run to the hospital and they started her on antibiotics, which caused her to get a real nasty case of a yeast infections in her mouth and throat. She has been in considerable pain and has not been able to eat since Sunday. She has started to drink again which is a good sign of improvement. They will probably release her this weekend if all goes well.
The biggest news is that her leukemia was coming back. Before she was released from the hospital a month ago we were told that it was back and the tests confirmed that it was increasing by about 5% of blood volume every 2 weeks. I am sorry if some of you were upset that I did not tell you but I have delayed putting out the word until both of us had had time to adjust. We were advised that the only option was to take her off all her immuno-suppressant’s and hope that the graft could fight it off. Chemo/radiation would just kill the newest transplant cells, and she would not survive a third transplant. It was not a very hopeful meeting.
So we went into “What if…?” mode until we received updates from additional testing. The “what ifs” were not plentiful and we began to prepare for her to return to her Heavenly Father if it came to that. We cuddled and had fun, went to plays and parties, whatever she had energy for.
Last week we were told that the additional test showed that no leukemia cells were present in her bone marrow. Her new graft had been able to eliminate the ones that had developed and any new ones as well. This was a definite miracle because of the aggressive nature of her leukemia.
This has also opened the door for Graft vs. Host Disease (GVH or GVHD). She has a very itchy rash all over but it seems to be getting slightly better as the days go one. One of her nurses indicated that a bad case looks similar to leprosy with the skin falling off. We are glad it is just a mild case but Halloween is coming up and that would be a great costume. Instead she has determined that she will be Professor Xavier from X-Men - bald/wheelchair - it works.
The good thing about the most recent transplant is that it was a live donor so we can request additional cells to re-enforce the current cell production if necessary and that was the plan until she started showing signs of GVH. We already have one dose ready to go if they deem it necessary. Since the discontinuation of a number of her medications her kidneys, liver and spleen have been much happier. She has not had dialysis this week yet, the swelling in her spleen has gone back to normal, and her liver enzymes are returning to normal.
A couple of Sundays ago my Dad read me a section in the “Church News” called Laney’s Legacy, this was quoted in the beginning:
In his book, "All These Things Shall Give Thee Experience," Elder Neal A. Maxwell wrote: "A mortal life may need to be 'shortened' … but if so, it may be done in order for special services to be rendered by that individual in the spirit world, services that will benefit thousands of new neighbors with whom that individual will live in all of eternity."
Mary is not ready to give up but she is also preparing for either outcome. She was able to attend church before Conference and meet a number of singles in the area. She said she has missed the spirit of peace that comes from attending services. She said she is ready for her “Happily Ever After” and wants to date, hold hands with a guy and do some smooching. She is also setting aside items that mean a lot to her to be given to people she cares about in the event she gets to join her Dad and brother Daniel.
If there is one thing I would encourage you to do, it is tell and show those most important to you how much you love them, especially your children. GIVE THEM A GREAT BIG HUG JUST BECAUSE YOU LOVE THEM. The time we spend on this earth is temporary and the legacy we leave behind is directly related to how we treated others in this life.
Our Ward and the Singles Ward will be participating in a special fast for her this Saturday and Sunday. If you would like to include her in your fast it would be greatly appreciated.
We appreciate the medical personnel for all their efforts on her behalf. They are an amazing group of people that are selfless in their treatment of those that are afflicted.
We appreciate all the advise on treatments and remedies. Please send them to me by email so we can utilize them if possible. Just be advised that if current treatments don't work, Mary's time will on this earth will be short so we will not have time to research and implement alternatives.
In truth there is only one person that can heal Mary...that is Heavenly Father. This is not a disease that could have been prevented or prepared for. If it is His will that she remain in her mortal body then she will regardless of the setback she keeps having. She was told in a blessing that she would remain until her mortal purpose was fulfilled. I certainly hope that is not for many years.
Thank you all for your love and support.
Love,
Deb
A donation account has been established at Zions Bank and Trust under the name Mary Caroline Hamner to cover medical and non-medical cost for Mary’s treatments.
Previous emails, pictures and creative works can be found on magicalmaryfairy.blogspot.com
Some memorable moments:
Maggie Ketchum, Mary’s cousin, was able to visit Utah for Maggie’s birthday. Mary was surprised and enjoyed her visit with Maggie immensely. She was very sorry that their time was so short and she was not feeling well for most of it.
Grandma Mary came to visit Utah as well and was able to spend some time in the Hospital with Mary. We love you Grandma Hamner.
Many of Mary’s cousins have move to Utah to attend school. It has been a great source of strength to have all of them here, surrounding her with love and support.
There were a few inmates incarcerated with Mary that were in the same general age group and Mary was able to make their acquaintance and become facebook friends.
The cute guy in room 10 was a favorite of the medical staff. I was able to become friends with his mom and eventually the nurses were able to set him up with Mary as a walking buddy. Their first meeting will be a story told for many generations I am sure, but I need to get more details from the other side of the story before I publish it. (Thanks to all the Nurses and Aids that worked on getting these two together, especially Suzie for taking care of the costuming and makeup.)
Jared and Suzanne and Family moved back to Utah. We are so excited to have them back with all their beautiful girls.
Mary received a couple of care packages from Aunts and Uncles and flowers from a friend. Thanks for your thoughtfulness. You are all awesome. She loved them.
It was also nice to have T around to shower her with love only a big brother can.
It has been a while since I have sent out an update. We have been on a roller coaster ride for the last month not knowing what will happen. Conditions could change tomorrow or not - it is a little like the weather. We had 90 temps last week and this week we have had snow.
Mary was home for a few weeks. She was enjoying sleeping without constant interruptions and food. Her hair is growing in and her appetite is improving. Her kidneys, liver and spleen are slowly improving. She was having dialysis on Tuesday, Thursday and Saturday for 4-5 hours as well as blood testing and transfusions if needed on those days. She also had a doctor visit each week usually on Tuesday or Thursday.
Everything changed last week, when she developed a fever. We did a midnight run to the hospital and they started her on antibiotics, which caused her to get a real nasty case of a yeast infections in her mouth and throat. She has been in considerable pain and has not been able to eat since Sunday. She has started to drink again which is a good sign of improvement. They will probably release her this weekend if all goes well.
The biggest news is that her leukemia was coming back. Before she was released from the hospital a month ago we were told that it was back and the tests confirmed that it was increasing by about 5% of blood volume every 2 weeks. I am sorry if some of you were upset that I did not tell you but I have delayed putting out the word until both of us had had time to adjust. We were advised that the only option was to take her off all her immuno-suppressant’s and hope that the graft could fight it off. Chemo/radiation would just kill the newest transplant cells, and she would not survive a third transplant. It was not a very hopeful meeting.
So we went into “What if…?” mode until we received updates from additional testing. The “what ifs” were not plentiful and we began to prepare for her to return to her Heavenly Father if it came to that. We cuddled and had fun, went to plays and parties, whatever she had energy for.
Last week we were told that the additional test showed that no leukemia cells were present in her bone marrow. Her new graft had been able to eliminate the ones that had developed and any new ones as well. This was a definite miracle because of the aggressive nature of her leukemia.
This has also opened the door for Graft vs. Host Disease (GVH or GVHD). She has a very itchy rash all over but it seems to be getting slightly better as the days go one. One of her nurses indicated that a bad case looks similar to leprosy with the skin falling off. We are glad it is just a mild case but Halloween is coming up and that would be a great costume. Instead she has determined that she will be Professor Xavier from X-Men - bald/wheelchair - it works.
The good thing about the most recent transplant is that it was a live donor so we can request additional cells to re-enforce the current cell production if necessary and that was the plan until she started showing signs of GVH. We already have one dose ready to go if they deem it necessary. Since the discontinuation of a number of her medications her kidneys, liver and spleen have been much happier. She has not had dialysis this week yet, the swelling in her spleen has gone back to normal, and her liver enzymes are returning to normal.
A couple of Sundays ago my Dad read me a section in the “Church News” called Laney’s Legacy, this was quoted in the beginning:
In his book, "All These Things Shall Give Thee Experience," Elder Neal A. Maxwell wrote: "A mortal life may need to be 'shortened' … but if so, it may be done in order for special services to be rendered by that individual in the spirit world, services that will benefit thousands of new neighbors with whom that individual will live in all of eternity."
Mary is not ready to give up but she is also preparing for either outcome. She was able to attend church before Conference and meet a number of singles in the area. She said she has missed the spirit of peace that comes from attending services. She said she is ready for her “Happily Ever After” and wants to date, hold hands with a guy and do some smooching. She is also setting aside items that mean a lot to her to be given to people she cares about in the event she gets to join her Dad and brother Daniel.
If there is one thing I would encourage you to do, it is tell and show those most important to you how much you love them, especially your children. GIVE THEM A GREAT BIG HUG JUST BECAUSE YOU LOVE THEM. The time we spend on this earth is temporary and the legacy we leave behind is directly related to how we treated others in this life.
Our Ward and the Singles Ward will be participating in a special fast for her this Saturday and Sunday. If you would like to include her in your fast it would be greatly appreciated.
We appreciate the medical personnel for all their efforts on her behalf. They are an amazing group of people that are selfless in their treatment of those that are afflicted.
We appreciate all the advise on treatments and remedies. Please send them to me by email so we can utilize them if possible. Just be advised that if current treatments don't work, Mary's time will on this earth will be short so we will not have time to research and implement alternatives.
In truth there is only one person that can heal Mary...that is Heavenly Father. This is not a disease that could have been prevented or prepared for. If it is His will that she remain in her mortal body then she will regardless of the setback she keeps having. She was told in a blessing that she would remain until her mortal purpose was fulfilled. I certainly hope that is not for many years.
Thank you all for your love and support.
Love,
Deb
A donation account has been established at Zions Bank and Trust under the name Mary Caroline Hamner to cover medical and non-medical cost for Mary’s treatments.
Previous emails, pictures and creative works can be found on magicalmaryfairy.blogspot.com
Some memorable moments:
Maggie Ketchum, Mary’s cousin, was able to visit Utah for Maggie’s birthday. Mary was surprised and enjoyed her visit with Maggie immensely. She was very sorry that their time was so short and she was not feeling well for most of it.
Grandma Mary came to visit Utah as well and was able to spend some time in the Hospital with Mary. We love you Grandma Hamner.
Many of Mary’s cousins have move to Utah to attend school. It has been a great source of strength to have all of them here, surrounding her with love and support.
There were a few inmates incarcerated with Mary that were in the same general age group and Mary was able to make their acquaintance and become facebook friends.
The cute guy in room 10 was a favorite of the medical staff. I was able to become friends with his mom and eventually the nurses were able to set him up with Mary as a walking buddy. Their first meeting will be a story told for many generations I am sure, but I need to get more details from the other side of the story before I publish it. (Thanks to all the Nurses and Aids that worked on getting these two together, especially Suzie for taking care of the costuming and makeup.)
Jared and Suzanne and Family moved back to Utah. We are so excited to have them back with all their beautiful girls.
Mary received a couple of care packages from Aunts and Uncles and flowers from a friend. Thanks for your thoughtfulness. You are all awesome. She loved them.
It was also nice to have T around to shower her with love only a big brother can.
Wednesday, September 21, 2011
Friday, August 26, 2011
More Mary
Mary has been on dialysis since Sunday and she is doing much, much better. The doctors are hopeful that her kidneys will be able to process her blood, after they relieve the pressure that they are under.
Mary's recovery this week has been miraculous. When I saw her on Sunday, I was very concerned, as she was very tired and worn out. But she has rebounded beautifully, of course, and is doing so much better. The doctor was even saying it might not be long until she can go home.
Anyone that wants to visit Mary definitely can! She is at the University Hospital on the 5th floor in the Bone Marrow Transplant unit, room 7. Please do not go if you have any inkling of illness, as she is still very susceptible to germs. Please make sure to sanitize your hands before going into the unit. And don't hug her too hard! She is very sensitive and it is easy to hurt her! :)
Thank you for your continued prayers! It has been a long year! Hopefully, we have seen the last of the excitement associated with Mary's leukemia!
Love,
Sonja
Mary's recovery this week has been miraculous. When I saw her on Sunday, I was very concerned, as she was very tired and worn out. But she has rebounded beautifully, of course, and is doing so much better. The doctor was even saying it might not be long until she can go home.
Anyone that wants to visit Mary definitely can! She is at the University Hospital on the 5th floor in the Bone Marrow Transplant unit, room 7. Please do not go if you have any inkling of illness, as she is still very susceptible to germs. Please make sure to sanitize your hands before going into the unit. And don't hug her too hard! She is very sensitive and it is easy to hurt her! :)
Thank you for your continued prayers! It has been a long year! Hopefully, we have seen the last of the excitement associated with Mary's leukemia!
Love,
Sonja
Sunday, August 21, 2011
Update of sorts
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
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
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.
. Tuesday, November 16, 2010
Day 5 Update
Mary had her transplant on the 11th. It was anti-climatic as it was just like a blood transfusion. The medical staff in the BMT ward came in and we all sang "Happy Birthday" to her and they gave her a gift of a beautiful throw blanket. Debbi and I also thought it was significant that her transplant was on Veterans Day, as Mary's father was a veteran in two wars and his service to our country may have been the cause of his and possibly Mary's leukemia. Maybe that was a sign to us that he and Daniel are working hard for her on the other side.
Now the stem cells need to figure out that they need to be bone marrow cells and get to work.
Today is day five. Mary is pretty miserable, although all of the things that she is dealing with are normal for her treatments. That doesn't make it any better, but at least it is not something unexpected. She is in pain and it is painful to talk, or do most anything else. They have given her the morphine button, so she can give herself pain medicine, instead of having to wait for someone to bring it to her. Hopefully that will make things better.
This is Debbi's Facebook status post today: Mary is really low right now. I just haven't had the heart to tell her she hasn't hit the bottom yet. Last night I just held her hand while we watched a movie because anything else is painful. Thank goodness for the blessings she has had and all the prayers on her behalf.
Please continue to pray for Mary and Debbi. And please remember T in your prayers, also. I know they could all use all the prayers they can get.
Now the stem cells need to figure out that they need to be bone marrow cells and get to work.
Today is day five. Mary is pretty miserable, although all of the things that she is dealing with are normal for her treatments. That doesn't make it any better, but at least it is not something unexpected. She is in pain and it is painful to talk, or do most anything else. They have given her the morphine button, so she can give herself pain medicine, instead of having to wait for someone to bring it to her. Hopefully that will make things better.
This is Debbi's Facebook status post today: Mary is really low right now. I just haven't had the heart to tell her she hasn't hit the bottom yet. Last night I just held her hand while we watched a movie because anything else is painful. Thank goodness for the blessings she has had and all the prayers on her behalf.
Please continue to pray for Mary and Debbi. And please remember T in your prayers, also. I know they could all use all the prayers they can get.
Monday, November 1, 2010
Hi all,
Well Mary was not admitted on Friday. She was very happy to celebrate Halloween at home. If there are no more delays she will be having her first Chemo treatment on November 3rd, and be admitted to the Hospital on November 4th. She had to have an MRI done on Saturday to check for any spinal problems (hematomas/fractures) that would be causing her the pain she is in. We should know the results today but they now want a pelvis scan that has been scheduled for tomorrow morning. So if she is admitted on the 4th her transplant date will be 11/11/10 – too bad it didn’t happen next year but if it is delayed a few days then she might share the date with T’s birth date on the 15th.
We have been playing stump the Oncologist this week. Many of you know that Sterling (Mary’s father) had AML with a trisome 8 mutation, well, Mary has AML with a monosome 7 mutation. This DNA mutation has caused a great deal of interest at Huntsman because it is so unusual for a parent/child to have leukemia but then to have cell mutation in both of them is a new encounter for them, I guess.
“DNA is located in the cell nucleus. It consists of two long polymers of simple units called nucleotides it is referred to as a base pair. When you have a trisome it means that there are 3 polymers not 2 and a monosome means there is only one polymer. DNA can be damaged by many sorts of mutagens, which change the DNA sequence.”Wikipedia The 7 and 8 refers to which pair in the DNA Strand that has mutated.
The DNA that is being referred to is her blood cell DNA not DNA you would find in your hair or skin. If that were the case a monosome 7 DNA would be someone with down-syndrome.
Part of the delay in finding this out is that they were not able to do cytogenetic testing on Mary before the last bone marrow biopsy. Blood from the bone marrow is required to do the test and there was not any present on the first 2 biopsies or enough on the third to do the test. This was because of the fibrosis (scar tissue) in the marrow. As I was doing a Google search I found that Chemotherapy can cause the mutation but so can other factors in both cases. So we may never know if it was the Chemo that caused Mary’s DNA mutation.
Visitation – I checked with the BMT unit and there are currently no restrictions (age limits) on visitors but there can be no more than 7 people in the room at one time. If you have any of the following please do not visit since it could be life threatening for Mary: Fever, Cough, Runny Nose, Congestion, Sore Throat, anything that you can get an immunization for (chicken pox/mumps/measles, etc…). Once this is all over she will have to get all new immunizations since she will no longer have antibodies for them.
Donor Information – Mary has 2 donors:
1. Female/Texas/dob 5/10/2010 (2 day after Mary’s birth date this year) O+ blood
2. Male/New York/dob 4/18/2007 A+ blood
We will be able to tell which of the donors grafted by what her blood type changes to. She will be able to meet them after 1 year in remission. What a great Christmas present for her next year.
Love Deb
Wednesday, October 27, 2010
Friday, October 22, 2010
Hi all,
I have been getting several calls lately for updates on Mary. She will probably be going in for her transplant on October 29, although that is not the confirmed date. We will know first part of next week what the exact date is but it will be around that time. There have been some hold ups as far as insurance and getting the donor cells transported here. Mary has had a very heavy schedule since she was released from the Hospital. She had to have blood work done every other day for the first 2 weeks and a weekly appointment with the Oncologist. Once her blood started to respond on its own she only had to have blood work done once a week. The testing for the transplant is very thorough. This is to establish a health baseline in case there are complications from the treatment. Of course I have still had to work so generally she has been coming to work with me on the days she has appointments/labs and she either sleeps under my desk or plays on the computer.
This is what she wrote to T about the testing: “I have like fifty flippin’ tests they want to do. Just on Wednesday I had to go to the gynecology lady (and that was just AWKWARD, but kind of funny, the first thing she said to me after was that I was without a doubt a virgin…go me!), then a bone biopsy, then a spinal tap (just so you know, when your wife has to have a needle JABBED into her spine, when giving birth, be sensitive to the fact that it will HURT and they somehow will want her to breath in DEEPLY while SUCKING in her stomach….doesn’t make much sense does it? But if you don’t you will be paralyzed for the rest of your mortal existence – SO DO IT!!!), then an echo, then an x-ray and by the time the day was over I was a sobbing shell of a human being. I spent the next two days sleeping.”
A live donor match was not found in this round of testing so instead of doing another round of live testing (which would take another 2-3 months) it was determined that a double cord transplant would be the best course of action. This eliminates the need for a secondary chemo treatment before the transplant. I have provided a link below to explain in more detail what a cord transplant is for anyone that would like to know more but the short explanation is when a child is born there is blood in the umbilical cord that can be stored in a Cord Blood Bank and they are called Cord Blood Units (CBU). That blood is very rich in stem cells and the stem cells are used to do the transplant. Because it has already been typed and tested it can be used immediately. A double cord transplant uses the cells from 2 different cords or CBU’s. This speeds up that graft time which, unfortunately, is generally slower than a marrow to marrow donation. The upside is there are fewer significant complications due to Graft vs. Host disease. (This may also be of interest to those of you who have been curious as to the how/why/where etc… of stem cell research) They have only been doing cord blood transplants at the University of Utah Hospital for about 5 years but the research goes back 20+/- years.
Mary is well. Her back and tail bone hurt from all the testing and medication that she has been on. Since the spinal tap she has been experiencing headaches on a regular basis. But she is down to one pill a day (and pain meds) vs. the 8 medications that she came home on. She has no trouble going out in public bald and is actually having some hair growth, about ¼ inch. It has been difficult for her to have her peers, meaning those in her age group, snicker and point but she gets past it and moves on. It has been interesting to be with her out in public and notice the reaction she gets from her fellow human beings. It is definitely something everyone should experience at least once in a life time. Her friends and cousins have been super awesome (probably not good grammar but…) supporting her through this experience and it has been a time of great spiritual growth for all around her, especially the youth. One nice thing is she had to have her braces removed since she cannot have them during the transplant. I can’t believe how good her teeth look. It was definitely worth the cost in her case. With T it was not so obvious.
Her blood count has been up enough to go to church the last couple of weeks and it has been both good and bad. She loves being there but has a difficult time sitting for 3 hours due to the pain.
We will be having a change of venu for the Holiday’s which means we will need to be creative so if any of you have some good (bacteria/mold free, non-exerting) idea’s let me know. I am not sure what the Hospital will allow but fresh ideas are always good. (Outside food will be extremely limited, but the chance she will be on meal-in-a-bag for Thanksgiving is very possible anyway.) We have been told to plan on her being an inmate for about 2 months. We will be handing out glow bracelets to the trick-or-treaters. LOL - Fresh from the radiation chamber – HA…HA…HA…
For the first month, she will be suffering the effects from the chemo/radiation as well as being on immunosuppressant’s, so the short of it is she will not be feeling like entertaining company and will be very susceptible to illness. I am not saying not to visit, but be aware that she might look and feel like death’s leftovers and do not to be surprised if she acts that way to. The room has a 3-4 person capacity so that the filtration system can function properly. I am not sure what restrictions the Hospital will be implementing for the fall/winter season. Last year they restricted children entering the hospital because of the Flu concerns. Just things to keep in mind when planning to visit.
Makaela Ray, T’s friend, and her mother Jody Ray are putting together a fundraiser. It will be a Murder Mystery Dinner. It will potentially be the week of November 15th. I cannot thank her enough for her help with this. More information will follow. We will also be opening a donation account at Zion’s Bank in Mary’s name for anyone that would like to assist with the medical cost.
This is a schedule of what has been happening and what will be happening for the next few weeks:
Blood work M/W/F 9/20-10/1
Dr Appt on Wednesdays 9/22 & 9/29
Braces removed and teeth cleaned can’t remember which day that was.
Monday, October 4, 2010
· BMT nutrition training
· BMT Pre/post treatment training
· BMT unit tour
Wednesday, October 6, 2010
· Blood Work
· Financial Counseling
Wednesday, October 13, 2010
· OB/GYN
· Labs & EKG
o They took 16 vials of blood – it took 1 ½ hours to get it all done. They check for everything, Liver/kidney function, and viral/bacterial strains lurking, urine/bowel testing, the list is extensive.
· Oncology – make sure all is proceeding well and she is feeling ok.
· Bone Marrow Biopsy/Lumbar Puncture
o This took another 2 hours because after each test you need to stay still for at least a half an hour to ensure you will not bleed, or leak out depending on the test. They also did a chemo treatment directly into the spinal cord since leukemia cells like to hide in the spinal fluid.
· Chest X-ray
o To check for any obstructions or abnormalities in the chest area
Thursday, October 14, 2010
· Pulmonary Function Test
o Breath in and out and a machine measures your lung capacity and functionality
· ECHO
o An ultrasound of the heart to make sure all the valves are flipping and the chambers are contracting properly, as well as the heart lining is sufficiently thick with no holes.
Tuesday, October 19, 2010
· Radiation/Oncology Consult
o This was a consult to discuss the treatment, side effects, answer questions and get consent.
· Measurement & Planning
o The lungs are particularly sensitive to radiation treatment so they actually design a shield based on digital imaging to fit Mary’s body (lung size) exactly, that she will use each time she has the radiology treatments. Each treatment is based on height, weight, age and of course the medical condition.
Friday, October 22, 2010
· Dentist – she will not be able to have any dental work done after the transplant for possibly a year so all dental work has to be completed prior to the transplant.
Tuesday, October 26, 2010
· History & Physical
· Line Placement (Same Day Surgery)
o This is to insert a Hickman Central Line. The Hickman she had for the chemo became infected so it had to be removed and replaced with a PICC line in her arm. Unfortunately the first PICC line developed a clot so a second PICC line was placed. Due to the problems she had with her lines it was determined that they would remove them all during her release and let her body rest. Unfortunately that meant that she has had to be poked for all her lab work.
· *****Sip water w/meds in AM 4 Hours prior, ok*No Eating 8 Hours Prior*RIDE HOME*****
Thursday, October 28, 2010
· BMT Consent Conference
Friday, October 29, 2010
Potential Admit Day (day -8)
Day Therapy
Day -8 Fludarabine IV 25 mg/m2
Day -7 Fludarabine IV 25 mg/m2
Cyclophosphamide 60 mg/kg
Day -6 Fludarabine IV 25 mg/m2
Cyclophosphamide IV 60 mg/kg
Day -5 TBI 165 cGy BID
Day -4 TBI 165 cGy BID
Day -3 TBI 165 cGy BID
MMF 15 mg/kg BID start
Day -2 TBI 165 cGy BID
Day -1 rest (in other words - PARTY/ watch Mary pay homage to the porcelain/plastic God)
Day 0 both cord blood units infused – Watch/wait for the graft to happen and Mary to recover
Fludarabine and Cyclophosphamide are both Chemo medications
MMF (Mycophenolate mofetil) - Cyclosporine A will be initiated at day -3 and continued until day 180, an immunosuppressant drug used to preventrejection in organ transplantation
TBI (Total Body Irradiation) - Patients will receive TBI given on Day -5 through Day -2, using a linear accelerator with lung shielding as per radiation oncology standards (meaning - 15 minutes of radiation on each side, front/back, twice a day, at least 6 hours apart), a form of radiotherapy used primarily as part of the preparative regimen for haematopoietic stem cell (or bone marrow) transplantation
Many have asked how I am doing and the truth is I am a bit overwhelmed right now. I do not look forward to seeing my daughter at deaths door and the waiting period for it to begin is something I would rather not be going through right now, or ever for that matter. With that said, I could not have asked for any better situation than where I am right now to deal with this. I do not have to worry about a house and all the responsibilities that go with that thanks to living with my parents. Work is extremely flexible with my schedule and my boss has been outstanding at being reasonable with regards to my responsibilities. T is serving a mission so other than emails I do not have to try to juggle time with him. T’s mission mom used to be a social worker at a couple of the local hospitals so she has been able to help answer all his questions. We have so much support from family, friends and neighbors that everything else just falls into place without me even having to worry about it. So other than being a bit emotional I am functional, nominally. Mary and I have a relationship that is very unusual for a teenager and mother to have and I am very grateful that we were able to develop that before this all happened, it has become even stronger through this experience. I have had to start relying on others to help me when I just can’t do something and that has been very difficult for me but a blessing all the same. My relationship with my Father in Heaven and Jesus Christ has also become much more important to me than it was before (not that it wasn’t important before, but with each test it becomes stronger) and my testimony of their love has increased.
Thank you all for your love and support through these trying times. We could not have come this far without all of your prayers.
Love always,
Deb
Friday, September 17, 2010
Thursday, September 16, 2010
9/16/2010
Rounds today were particularly exciting. The Dr’s suggested that Mary might be released tomorrow. I am shaking with the shock of it. I had told Mary earlier in the week that I was guessing Monday the 20th. As the week has progressed I thought that might even be optimistic but her white blood cell count jumped to over 1 today and she has been put on a soft food diet this morning. She will probably hit whole food tonight. They are also taking her off all IV drips as of today.
Here is what has been happening since the last update.
· Her Hickman Central line had to be removed because of a yeast infection
· PICC line #1 had to be removed because of a blood clot. The PICC team uses an ultrasound to find the vein in your arm. While the PICC team was busy looking at her veins, Mary piped up “Well, is it a boy or a girl?” We all started laughing and Steve, the only male in the room said, “I am hoping for a boy so I am not so outnumbered. It was a great way to diffuse the tension from the procedure. Mary, you are so so so amazing.
· PICC line #2 Mary became a guinea pig for a new student who was replaced by the instructor after she stabbed Mary 3 times and still could not get it. Mary was able to make it through the procedure w/o me there. Kuddos
· She has Hives – from her white blood cells coming back home to find everything a mess – who would have known that one of the 10 plagues would be considered a good thing.
· She has been on meal-in-a-bag (TPN) for over a week to deal with some intestinal inflammation and even though she can eat now she has no appetite
· She has had her lungs and heart scoped
· She has had MRI’s of back, lungs, intestines, heart, stomach (as well as a few x-rays)
· She had a popsicle stick to her lips – the one treat she did get last weekend and she couldn’t get it in her mouth
· Through it all she has been smiling and is now walking a couple of miles a day around the floor (the hamster wheel is what we have been calling it, since the patient rooms are in a circular pattern around the nurse station, and 12 laps make a mile)
· And the final objective - We finished the last puzzle we had yesterday, great news we even had all the pieces
T has been ruled out as a transplant donor for Mary, so they are following up on 4 live donors and 4 cord donors. We should know in the next couple of weeks if one of them works out.
Grandma and Grandpa Soderquist have been working very hard to get her room ready. They removed all the furniture, of course only after cleaning up the room. They removed the carpet and have put in laminate flooring, a new ceiling fan, and are now working on putting her new bed together. I just cannot thank them enough for all their love and support, as well as the support of all our family and friends.
Love always,
Deb
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