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.