Hi all,

Mary is starting to tolerate food again - it is either bland or at times kind-of tasty which is an improvement from everything tasting terrible.  She is actually able to eat and keep it down, woot woot...  Mary has a great scalp - she looks so cute bald (potentially a benefit from a C-section birth, blessings from adversity).

The concerns are:
Mary is not making new blood at this point.  It has been almost 3 weeks since the chemo and still no positive signs in this area.  This could be do to the leukemia coming back already or her bone marrow is just to damages to produce blood at this point.  If the leukemia is back already they will start a new chemo regiment immediately, They are doing another bone marrow biopsy tomorrow to determine it this is the case.  If the marrow is just to damaged then they have a growth hormone that might help stimulate the blood production.  The big concern is the lack of white blood cells, infection fighters, and the toll it is having on her body which leads to the next concern.

Mary is coughing significantly.  They have done a CT scan and an x-ray to see if she has pneumonia.  The CT scan did not rule it out or show any significant reason to think she had it.  The x-ray results are not back yet.  If they can not tell from the x-ray they will be doing a lung scope, but she needs to have a higher platelet count before they can do that so that means a baggie or two of platelets - yummy yummy.

Other than that - she is a little down from all that has been happening.  She is morning the loss of being 18 and all the fun things that she should be doing at this time in her life.  The reality that her life has taken a dramatically different road than she had been planning has kind-of given her whiplash and that is catching up now.  Her big concern lately seems to be if she will be able to serve a mission since once she is in remission it will be 5 years before she is declared healed, but we have 3 years to figure that out.

One of the patients that Mary has become good friends with was released on probation last night.  Ann has been in and out for the past 14 weeks and has the childhood version of leukemia, even though she is considerably older than a child and, Mary, being relatively young still, having the more mature persons leukemia, has really bonded them.  It was difficult to see Ann move out and be the one stuck behind. 

So we are looking at at least 2 more weeks, best case scenario, before Mary is released from the hospital.  If the leukemia is back it will be much longer than that.  What ever happens, she is not in any pain, just minor discomfort, all her physical needs are being met, all her emotional needs are being addressed the best we can.  We still can go to church each week and partake of the sacrament.  We are so blessed to be here in Utah where we have the spiritual direction so close at hand and the priesthood all around us.  We just have remember that the road between here and being healed is being directed by Heavenly Father and we can endure it with his help.

All-in-all she is still smiling each day, She can't really laugh right now because that brings on the coughing attacks and then vomiting but I can still get a small chuckle out of her every now and then.   We were given a great book that we are saving for a later date when Mary can enjoy the book more fully, "Bullies in the Headlights" which is a sequel to "Chickens in the Headlights".  Chickens actually had me laughing my BOWELS out.  Thank you visiting teachers. 

Some fun things that happened this week:

Mary was tired of eating her hair that was falling out so she had her nurse shave it all off (no more hair balls).  The next day she wore her buffalo hat to walk the halls.  One group of Doctors finishing up rounds stopped, nudged the person next to them, smiled at her and gave her thumbs up.  Several other members of the staff, as well as family members of other patients laughed and joked around with her and it really lightened the mood of the whole floor.  Thank you Tiina Geddes for the great hat, it caused a stir if not a stampede.

In church on Sunday Mary's IV stand started to beep during the sacrament prayer (her platelets bag was empty).  Luckily there was a nurse right behind us that jumped up and pushed a few buttons to silence it.  Then after the sacrament was over she once again came to Mary''s aid and made several more adjustments with the bags and machine to make sure Mary was OK and the machine was happy too, and so the meeting went on.    Where else but in Utah could that have happened, first of all to have meetings, and the sacrament, at the hospital but then to have medical professionals attending that can care for you on the spot.  One thing that was very notable was that it didn't matter to anyone that patients were in hospital gowns toting IV poles and medical personnel and family members were not wearing your typical Sunday attire, what mattered was that we were all there to partake of the sacrament and grow closer to our Heavenly Father and Savior Jesus Christ.  None of us were concerned that so and so had a different hair style (bald with a cap to stay warm) or so and so was wearing Levis and tennis shoes.  What mattered most was that we were bothers and sisters in the gospel there to grow closer to our Father and Brother and for the spirit to testify of their love for us.  We are soooo soooo blessed to live in this area.

"Chickens in the Headlights" by Matthew Buckley...This book is about a city family that moves to the country and their experiences on a  farm.  It is absolutely hilarious and had several scenes that were very similar to some events in my youth.  In particular, the unpredictable nature of livestock while transporting them in the family car/van.  There are many other Laugh out Loud moments, even my parents were laughing.  A great book for young and old.  An easy read.  Available at Amazon.com. as well as other online book sellers.  Barnes and Noble and Amazon have the sequel "Bullies in the Headlights".  

Love always,
Deb

Good, Bad and the Ugly

Well, things are good/bad today. I am not making new blood which I should by now, and that is a big concern and I might have viral pneumonia. The good news is I can eat without vomiting and some of it actually tastes good. So it looks like more testing and more drugs...Party time on the cancer ward, BYO what ever... Hair is optional

Buffalo Hat

Hey all - I donned my Buffalo hat to cover my bald head for a walk-about - really it is like a hamster wheel (round and round we go)- and I got a lot of laughs, thumbs up and every one wanted to know where I got it - Thanks Tiina - nothing like making every one smile on the doom and gloom ward - pictures to come

Mary's hair

Mary took the plunge last night and had the nurse cut off all her hair. She was tired of it shedding and getting all over everything. She has a cute head, not all deformed like mine. Thanks to Walter we have a new name for the barff bucket - Barffolomew. Now we just need a name for the cowboy hat. Thanks Shaun for the haircut.


Love,
Deb

8/23/2010

Mary's bone marrow biopsy came back clear from leukemia - Yipee, what a miracle. If all goes well she will have one more biopsy before she comes home to get ready for the bone marrow transplant. We are hoping she will be home in a week or two, and she is real happy because the Dr told her she can eat again, no more food-in-a-bag.

Love,

Deb

The biopsy came back clear!

I just talked to Debbi and she said that the bone marrow biopsy came back clear.  This is the best case scenario for Mary and her cancer.  It doesn't necessarily mean that she is cancer free, as this cancer likes to hide.  But it means that out of the scenarios that were explained to us at the BMT meeting, this is the best thing that could have happened.  Her cancer is responding to the chemotherapy!

Thank you all for your prayers and fasting on Mary's behalf.  Prayer absolutely works!

Love,
Sonja

8/19/2010 Debbi's email update

Hi all,

Thank you all for praying and fasting with us on Sunday. Mary received a great blessing. She was promised that she would be healed because she still had a mission here on this earth. She was also told that there were many from the other side that were present for the blessing and that when the time came for her to return to her Heavenly Father they would be there to greet her and welcome her home. This was a great comfort to me but it just confirmed my feelings that it was not time to say good-bye yet. A few of the people present felt very strongly that Sterling and Daniel were with us as well as many others.

Mary started to “pull her hair out” with more diligence yesterday and today she woke up in a nest of hair. It should take a few days for it all to fall out. Several family members have expressed an interest in joining Mary in this fascinating experience. Make sure you send her photos of all your bald heads so that we can share the fun.

She is hitting her low point in the treatment right about now. She wanted me to make sure you all knew you were welcome to visit if you liked but that she is really drained and may not be very good company so short visits would be best. She is still experiencing abdominal discomfort but we have been able to find some solutions to give her some relief. Yesterday she was able to sleep for about 3 hours while I was with her. This is a longer period of sleep for her than she has had in the past 4 days. She is still not able to keep food down and this has caused her to feel very weak but she is still plugging along and smiling through it. They will be doing an x-ray of her abdomen to see if there is more to it than the usual issues.

We met with several members of the Bone Marrow Transplant (BMT) team yesterday. They went over the process of the BMT and the risks. This was a bit scary for Mary just because they do not hold anything back and it all sounded painful. I reminded her of the promises that were made both in her blessing on Sunday and her Patriarchal blessing and that this was just an obstacle that she would be able to conquer. Mary continues to meet her challenges with faith and hope – she just does not like pain. We have family prayer each night and read at least one scripture together. She is also trying to complete reading the Book of Mormon while she is in the Hospital.

T sent his initial blood work back on Monday so we should have an idea if he is a potential match by early next week. If he is not, then they will continue the search through the National Bone Marrow Registry. The link again for them is www.marrow.org

The preliminary pathology report is in and Mary has a very rare form of Acute Myeloid Leukemia (AML) called Acute Panmyelosis with Myelofibrosis (APMF) which is a different type from the Trisome 8 that Sterling had. I have included a link if you want more information. Unfortunately there is not much available on it since it is so rare but it appears that a BMT is the only way to treat it effectively right now.

http://www.cancerhelp.org.uk/about-cancer/cancer-questions/what-is-panmyelosis

Many have asked about the expense of the treatment. I spoke with the Financial Counselor today and he gave me great news. After checking with my insurance it looks like the out of pocket expense will be less than $5,000 per year including the chemo treatments, BMT and Rx. Our ceiling on the policy is higher than previously thought so most of it should be covered. This was a great relief to Mary. She has been very worried about the expense, even though I have tried to tell her not to worry about it. This is not unusual for her, however, since she was worried about finances prior to this. LOL

From Sonja’s Blog “One funny thing that happened, Mary said at five o'clock in the morning, when the nurse came in, it was a different nurse than she had earlier and it wasn't a usual time for the nurses to change. The nurse was kind of clumsy and making a lot of noise, with the light on, and was pretty chatty, asking Mary all about what happened to get her there. The nurse mentioned that she had won Mary as a patient in a card game the nurses had been playing. We don't know what the game they were playing, but apparently Mary is such a fabulous patient that she is now a commodity. (Mary, not being a morning person, was not thrilled with the chatty, clumsy nurse, but I am sure she was still nice.) We laughed about that. And her aide said that Mary is the best patient on the floor. It's nice that she is so positive and happy that she is making a good impression on those around her. She is an amazing person!”

We are doing great and have recognized the Lords hand in many ways since this has happened. Once again I want you all to know that I have a testimony of the Atonement and the gift that Jesus Christ gave us when he suffered all for us – that we might have him as our companion through our trials and tests. He has truly been my companion in this as well as the Holy Ghost. They have been very busy comforting me and prompting me in my actions. I have seen many miracles in just a few short weeks and recognize the hand of my Heavenly Father in these acts. I love the Lord and am grateful to know of him and his roll in my progress here on the earth. In the name of Jesus Christ, Amen.

Love,

Deb

8/11/2010 Mary's status update

Well I still have my hair, so no painted eyes in the back of my head yet, and other than my vomiting the doctors say that I'm having a smooth operation. Also, I would like to thank all the people that have given me their support, love and gifts....they go further than you'll ever know...

Debbi's Email Update 8/11/2010

WOW!!! What a difference a week can make in our lives.  Yesterday was a particularly busy day.  At rounds we discussed the treatments and what would happen next as well as the preliminary findings from the bone marrow biopsy.  The biopsy was a particularly difficult process.  The Dr had difficulty getting a good sample and had to do 2 dry taps since they could not get any fluid out.  A dry tap is when they carve out a button of bone and marrow.  The reason for this became apparent once they began to study it.  They discovered a lot of scar tissue in the bone marrow.  There are a number of reasons this could happen but what it means is that the marrow is injured and will require a bone marrow transplant (BMT). We met with a transplant coordinator and discussed some of the concerns and a little about the treatment.  We were told that family members and friends can join the National Bone Marrow Donor Registry at www.marrow.org  but generally speaking only full siblings will be considered initially for a match after that they will go to the registry for a match.  Mary will have some time at home in between the chemo and the transplant to mend even if they find a marrow match quickly. Many of you have asked about blood donations.  Blood can be donated through ARUP Blood services. http://www.utahblood.org/index.html  Although it may not go directly to Mary it is always in need and that is one way you can show your support.  There is also information on setting up a blood drive. We spoke with T on Monday because of some changes in the schedule of his P day.  It was very positive and Mary and T talked and laughed for half an hour.  T is good and committed to serving the Lord.  He is aware that this is part of our Fathers plan and has been comforted.  We are in close contact with the mission mom and she has been great.  She used to work as a social worker at St. Marks Hospital and LDS Hospital and will be a great source of knowledge and comfort for T I am sure. Mary has a different Blog page – carepages.com ended up too difficult to navigate so here is the new link. http://magicalmaryfairy.blogspot.com/   Nothing is posted yet but we will have some post by tomorrow. We are still planning on a special fast for her this coming Sunday, August 15th, and I would like to invite family and friends to participate in a priesthood blessing at 6:00 pm at Huntsman Cancer Hospital.  We will not be having a party at that time and ask that, if possible, younger children with a lot of energy be left in the care of someone else to reduce the distractions.  The Doctors have indicated that Mary will not be feeling optimal by then and were concerned about her feeling overwhelmed and of course the germ factor. Some highlights of the week: Many family members and friends have visited and we appreciate all the prayers that have been offered on Mary’s behalf.  Mary has her people poster on her door that Sonja has made and would love to have it filled with all the people that are behind her.  This is so she has a visual reminder of all those that are supporting her during this earthly test.   She has die cut-cuts in her room and would encourage you to participate as you stop by to visit.  If you are not close by and would like have an avatar made for you we can do that.  Just let me know and I can delegate it out. We were able to attend church on Sunday.  Huntsman Cancer Hospital and University of Utah Medical Center have a branch in the hospital that is part of one of the student Stakes at the University of Utah.  We had a shortened sacrament meeting and were able to meet the Branch President and his wife, President and Sister Smith.  They were very nice and have added Mary to their list of members. (Oddly enough, Mary had been listed as no religious affiliation during the admitting process.  If we had not attended they would not have been able to visit with her.) Elliot the dog came to visit on Sunday.  He is a therapy dog that visits Huntsman, Primary, Shriner’s and University of Utah Medical Center.  He is a poodle mix, very tall (he was up to his handlers waist while standing on all four), with brown curly hair and he said a prayer for Mary.  Imagine this, he knelt down more or less, put his front paws on Mary’s bed, bowed his head and barked Amen.  It really was fun to have him visit. Yesterday Mary was feeling rather depressed, like she would never be better again. While she was describing it to me she specifically called it “evil that surrounded her”.   It lingered around her for several hours.  We read a scripture and said family prayer and then I left to go home.  After I was gone she read her scriptures and sang some songs but the feeling continued to linger.  Many thoughts were running through her head about death and then she realized that everything would be fine, she would recover and so she told them,  “Leave me alone.  I am going to be fine.”  The evil left immediately allowing her to get the rest she needs.  She woke up this morning with a renewed faith that all would be well.  What a testimony building experience on so many levels.  We realize the impact this is having on all those around us and we pray for all of you that you might know that Heavenly Father is in charge and that he loves all of us, and that Jesus Christ is our Savior, brother and friend.  We recognize they are directing all that has happened to lead up to this and all that will happen in the future.  We are hopeful that we will recognize and act on the things that he is teaching us so that we might further his work here on this earth. Love always, Deb

August 5th

Hi all,

Some of you may know this by now, so sorry if this is a repeat, but Mary has been sick for a few weeks and today we found out why.  Her initial diagnosis is leukemia.  She has been admitted to Huntsman Cancer Hospital.  They will be doing a bone marrow biopsy today to determine which kind it is and what the treatment options are.  She can have visitors but please do not send/bring balloons, living plants (flowers/plants/fruit) and please don't visit if you are ill (visitation is very liberal for anyone over 18 and children are welcome but can not stay after 8:00 pm).  I would like to have a family blessing for her sometime in the near future and a family fast so if you are going to be in the area in the near future please let me know so I can let you know when the blessing will be held. 

Love you all,
Deb