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.

T shaving his name on Mary's head!

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

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

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

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.

Love, Deb

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

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