It is a long road

      We have had a wonderful month with family here for Thanksgiving and a wonderful Christmas Eve and Day with 2 children and their families who are in town.  
       I have slowly been tapered off the prednisone to 5 mg.   I have been sleeping so much better at night.  Although, a couple of weeks ago, a rash appeared on the trunk of my body.   The doctors all agree that it is a graph vs. host disease and happens with tapers.   The rash has been interesting.  It is ugly red and itches a little.   It also seems to run its coarse, lighten up, and then  will appear on some part of my body.  Luckily, it has not gotten to the point up going back on higher doses of prednisone.   I have a steroid creme that seems to work.   I don't know why, but I have not felt as well the past couple of weeks as I've been going through this.   And it has also delayed the taper of the other drugs that I am on.   Oh well-it's all part of going through this and there is not a definitive answer for what the near future holds.   I was told at clinic on Monday that people that get graph vs. host seem to do better in the long run.   I'll take it!    The trick is keeping it under control!  Who knows what other surprises I will get.  
       I was fortunate to do most of the shopping for Christmas online.   I went out a couple of times in early November before there were any crowds.    I also made picnic 'blankets'( three beach towels sewn together) for every family.  I did this when I was on the high doses of prednisone, and I had more energy than I have today.  I had help with wrapping and with shipping and towards the end with last minute shopping.
      We have loved the Christmas cards we have received and all the gifts from neighbors and friends.   My ward Relief Society put together a quilt.   Everyone took their own square and did their own creative thing.  A very talented woman then pieced it all together and quilted the edges and in between the squares.  It is such a treasure and I look at it every day!   I'm still so overwhelmed with how people care and show their expression of it.   I haven't gotten discouraged, although I was sorry to miss every Christmas party we were invited to.    This is a time to heal and continue to be careful and cautious around crowds and gatherings.  
     We look forward to a new year, and healing and getting back to some normalcy-but not putting a time table on anything.
      Love you all and wish all of you a great year!
Kathy

DAY 100

     Tomorrow is the big day where I reach 100 days post transplant.    In the summer we couldn't even get our heads around 100 days out as it seemed such a long ways away.  But here we are.    So what does it all mean?    I think that is what I've been asking myself and I've come up with a few answers.  The first good news is that I have been able to be home since September 14th and haven't had any infections.
     By reaching this day, I have been able to slowly taper off the prednisone.  I still have a couple of weeks before I am totally off of it.   It means that sleep has gotten a little better.   I still go in for weekly check ups.   There have been hic hups along the way with blood counts and medicine levels.  I still have some tough side effects from the immunosuppressant drugs that I'm on.  I'm reminded weekly of the slow healing process and possible complications still ahead.  But there is some encouraging news, too.  I am getting out a little and can do more around the house.   I have had some tests that show that my bone marrow now consists mostly of donor cells.   My blood still needs to reflect that so it is a matter of patience and further healing.  And I will be going in for more tests after Thanksgiving to mark the 100 days.  
     It would be nice if this could all be buttoned up and over with.   But, we have come to understand that there are a great many variables in this process.  Every week I am evaluated, and some things change.   I am back on an infusion twice a day (added to the other two infusions) that I had been taken off of in October.   So, I move forward with some things and then take a step or two back.
     I enjoy my days and even though some days I'm on the couch more than other days, I enjoy the simplicity of my life.   We are looking forward to having our children here next week.  They are staying at other places, but just to see the grandchildren and have them around a little will bring me a lot of joy.
I'm still amazed at the generosity of those who express their concern and love for us.  Everyone has been so good to us and we appreciate more than we can say how grateful we are for all that is said and given to us.      Love to all,   Kathy

No news is good news

     I know it's been a while since we have updated.   "No news is good news" is why we haven't updated. Everything is going along as it should and my weekly check ups are more of the same.   My blood counts do bounce around a bit, so I don't get too excited if they get really low one week as the next week, they may go up.   All of them are still low-below the normal range, but lately have gone up and that is encouraging that the bone marrow is working.   I know that it will be a while before anything is 'normal', so I don't get too excited.  I had a bone marrow biopsy and CT scan last week and both show that the doner cells are working.  
    I am enjoying going on some outings.  I also try to get out and walk everyday.   I feel that I have a little more energy and stamina.   And my hair is slowly coming back in.    I love seeing my children and grandchildren.(There are only 3 grandchildren that live here.)    I had  a great weekend with Anthony a few weeks ago.   He was a great help and fun to have around.  We're looking forward to Thanksgiving.  We have several coming-all staying at different places-but it will be wonderful to have family around.
    We are still being very careful about 'germs' with the flu season coming.  I know I'm OCD about it, but I have no defenses right now, so I have to be careful.    
    We have a lot to look forward to and I'm so grateful for life.   It's a joy to wake up every morning.
I'll get Katie to post the next blog-she is much more interesting and has a flair for writing.
Thanks for all your support!
Kathy      

56 days out

     Fifty six is the number  of days since I had the donor bone marrow transplant.    It feels good to be this far out.  Although, I'll sigh with a little relief once we hit 100 days out and then the 200 day mark.  
    So far-so good-no illness or infections and just the rhythm of my days go in and out.   I'm enjoying the time home to do whatever my body will let me do-and have a good excuse to rest, read and knit!   Yes,  I am knitting-I don't know what it is I'm making, but the knitting keeps my shaking in check and it's something that I'm  enjoy doing.   I'm going on a few outings to grocery stores and other quick errands, but always with a mask.    It's interesting how I'm not recognized with the mask and a hat on and some people don't know exactly how to react.  It's ok and I feel quite anyomous.  I don't mind at all.   It keeps people from asking too many questions.  
     I'm still so overwhelmed by the outpouring of love we have been shown.  Thank-you, Thank-you for all your heart felt wishes, and prayers in my behalf.
      I feel optimistic and hopeful and so grateful for medical science and the good team that I see once a week who watches over me with eagle eyes.
      Anthony comes in this weekend which I'm looking forward to.  My children have been so attentive as I have mentioned before.  They inspire me!  And Doug is taking great care of me.
      As always-with deep appreciation for everything life has to offer!!!

56 Nights!

Hello, hello world. Katie here- blogging in lieu of my lovely mother. 

She informed me the other day that she spent 56 nights in the hospital this summer; no wonder why she feels like there was no summer this year. That is no small thing. 

She continues to enjoy being home and has her productive spurts of cleaning out shelves, closets, etc, but also finds that such activities leave her wanting to rest immediately afterwards. She is greatly successful at making her own meals each night for her and Doug. Kudos. 

Heading into the sick season makes us all a little anxious and nervous. Anyone who wishes to visit my mom needs to be up to date on their immunizations, including and especially the 2013 FLU VACCINE. Very important. 

The long, slow, and gradual recovery continues, with deepest gratitude for everyone's magnificent care and love for Kathy. We all, really do soooooooooo much appreciate and treasure any prayers, fasts, and good thoughts people do for her. Everything about this long road is taken not in big strides, but in baby steps. She is also still on an IV at home, which she does on her own (Kudos again)--- and many pills that would require the smartest pharmacist to remember when to take them all! That alone is a huge chore, which, again, she does all on her own.

Baby steps, baby steps. She's doing as good as anyone could hope for. Thank you to heaven, for granting so many blessings and tender mercies!

Good week

I've been home 10 days and still loving it.   The days go by fast and it's a good week when I can be independent in taking care of myself and doing a couple of things around the house.  My life centers around meds, infusions and resting.(Sleep is still not great at night, but much better than a week ago.)  But that is ok.  I'm grateful that I am being carefully watched over by a very capable medical team.   I go in twice a week to the clinic where adjustments always seem to be made and I am questioned carefully on everything pertaining to my diet to sleep to activity and strength and everything in between.
    I'm being very careful as all my defenses are down. We are now being told that any visitors that I have should have had their flu shots, and if it is a nasal one, to wait two weeks before seeing me.  My sisters and katie are mostly my visitors.  It is ok as I really don't have a lot of energy to talk and converse, although in time, I hope that will change.   Doug is a great comfort and company for me.
     I'm lucky that my eyes have not been too affected by all the meds and I can read which I am enjoying.   I have a huge stack of books and it has been so fun finishing one and picking up another which is just as good and engaging as the one before.
     My head now has some white fuzz on top.   I may leave it white this time instead of reverting back to a blonde. I have not minded being bald as it has been the least of my worries.   I have been surprised by the lack of wigs I saw up on the 8th floor.  Being bald is like a badge of honor up there.
      We are still so overwhelmed my the caring thoughts, prayers, coming our way.   They mean so much to me as it is a while before I'm 'out of the woods'.    I have to make it through the first 100 days (which will be Thanksgiving) and then the second 100 days which is February to see how I really am doing. And then a couple of years to know if the donor cells really worked.   So, staying healthy is key.  And we find that the caring thoughts and prayers comfort us giving us great hope.    
 Thank-you for being interested and for caring so much!
Love
Kathy  

I am home

I was able to be discharged on friday afternoon.     It was wonderful once again to walk into my home without being attached to anything.   I had a pretty remarkable week last week.   Every day, I made some progress and by Friday, most things were under control and I had been weaned off the nutrition and most IV's.   I am eating but it it restricted, but I'm just happy to be able to eat and drink.  
    I have learned to hang IV's as I have about 4 hours of IV's every day.   Home health care has been great.   I also take about 12 different types of pills twice a day.   There is a lot to keep track of.   I'm still weak, but as I am home and walking around more, I can tell that I'm getting stronger.   I'm pretty slow, but at least I can do personal things by myself. Last week, I was pretty dependent on a lot of help for everything.
     It will be a long and slow recovery.   We will not know for a long time if it worked the way we wanted to, but we are hopeful and feel at peace. The first 40 days and then 100 days and then 200 days will give us a better picture.  And then it will be another 2-3 years before we know what the outcome is      I am on heavy steriods and immunosuppressive drugs so I am vulnerable.  My blood counts are at a yo -yo right now, but going in the right direction. (All the meds have an affect on this.)
      Andrew seems to be my lucky charm.   He planned on coming out last weekend which he did and I went home-just like what happened in July.    It was great to have him here for 48 hours.   Anthony was with us at the beginning of this 3 1/2 week stay, so I had two great bookends, and Katie and Doug to fill in and comfort the rest of the time.  (And a shout out to sisters who continually encouraged me and helped where they were able to. )    
       Once again, I am so grateful for love, concern, good doctors and nurses, and science that has made this possible.   I also believe in prayer and know that prayers of family and friends were heard in my behalf and answered in small and miraculous ways.  
       Thank-you for your interest and attention.   It means so much to me and keeps me buoyed up.   Let's hope for no complications and that I can continue to stay home.   I do have clinic visits twice a week.  Amazing how fast the time has gone here at home as there is so much to keep track of.  
Thanks for your love.  So upward and onward to a healthy fall and winter.
Love you all,
Kathy      

Feeling better

Hi Everyone,
Kathy here.   It has now been 3 weeks since I had the donor cells infused in my body.   It has been quite a rollar coaster only to be reminded that i am in a marathon for another six months to few years.    I have been in the hospital for the most of the past three weeks.   Doug and I thought it was optimistic to think that this could be done outpatient.   I'm glad that I  have been in the hosptital these last few weeks.  Most of it has been a blur.   I have been very sick and finally feel that I turned a small cornor last Friday.    The fact that I am on my computer is huge.    There is a a lot of suffering here, but to put it all in perspective, I have had the best care and grateful to all the personel here.     It breaks my heart to think of suffering around the world.     There are also the kindest patients here and we all have an infnity for each other, even though we are too sick to talk to each other.  
    I was finally able to drink some diluted apple juice on Saturday.    I still have not eaten for over 10 days, but I can start to drink.   There is nothing better than diluted apple juice with ice chips!!!!!
    I still love hearing about people.   Doug is so caring and loving and keeping me up on news.    Katie is a gem and I got a visit from Anth  a few weeks ago and Andrew is coming this weekend    My kids have been incredible through all of this keeping me positive and laughing with funny grandchild stuff.
      Thanks for your love, faith and prayers.   I feel them and will forver be grateful for people caring so much.  
        I do  not know when I will be discharged.   Everything is in baby steps and I still have strength to gain and a stomoch to start working again.     Grateful my niece gave birth to twins-boy and girl and only 31 1/2 weeks along, but so far seem healthy.   I don't have the details.  
      I'd love to see you and talk with you, but it might be a while as it is hard for me to communicate.
Love you all,
Kathy

Expectations and Specific Prayers

Sunday update for you all.

So, since the last time I posted, my mom was in the hospital, then came home for about 36 hours, woke up with a fever and some other unpleasant symptoms last night, and is alas, back in the hospital as of early this afternoon.   As of now, the medical staff are performing tests of all kinds to find the reason for her fever, and fortunately have ruled out more serious possibilities.

We want everyone to understand that THIS cycle of my mom being home, and then going into the hospital for a few nights at a time, will be the NORM for some 200 days- give or take. As Doug reminded some of us today in an email, we may really not know until Jan/Feb of 2014 how everything has ultimately been accepted in her body-- it may be that long before we get the stable outcome we are all yearning for. Doug phrased it like a sort of stabilize (at hospital), respite (at home), stabilize (at hospital), respite (at home) kind of course. Basically, a very volatile roller coaster for the next solid 6 months.

Even when Kathy isn't admitted into the hospital for days at a time, she will be in the clinic several times a week for many hours at a time getting blood counts.  I think God must put only the bravest and most courageous and most patient people (and their spouses) through this kind of thing. Honestly. Thus, this recovery is a marathon- not a sprint; it's a long haul. Just today when I was up there, I noticed a patient slowly strolling around the hallway with hair that was maybe an inch long on her head- indicating, that she had received her treatments several months ago, but was still in the hospital recovering. It was a reminder that this is no easy toddle and meander out to a paradise beach front; it is very much a steep mountain to climb, and it's a long and strenuous route

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We'd like to ask you to join in with us (from wherever you live!) to pray fervently on a daily basis for some specifics. The quote on top of this post, that God is involved in the details of our lives, is true. So let's be detailed. Of course He has His will, and we don't want to change that, but let's pray specifically.

1. We are praying for her body, most of all, to accept these donor's stem cells, fully and totally.
2. We are praying that her body doesn't experience any serious degrees of the typical and common, Graph-VS Host disease (there are two versions, acute and chronic- we especially are very very prayerful that she doesn't get chronic).
3. We are praying for a normal, and healthy quality-of-life after all is said and done.
4. We are praying for inspired medical decisions from nurses and doctors.
5. We are praying for Kathy's blood counts (platelets, etc), to grow healthily on their own and stay high
6. We are praying that her organs remain strong, and unharmed from everything they've undergone
7. In short, we are praying for a miracle and for a cure, if God sees that fit.

And whatever else you may feel inspired to pray for, please, by all means, DO IT!:)


We appreciate and value and do not underestimate your faith and positive thoughts. They are needed weekly, daily, HOURLY. Please know that your prayers, and your faith, and praying for these specific blessings mean more to us than just about anything.



Thanks again!

xo
Katie

Back

A bit of a bummer, but Kathy was admitted to the hospital on Sunday after a terribly rough night of severe nausea and overall feeling of illness. Nurses, doctors, all of us, are hoping it's only for a few days. They are working on finding a solution in terms of right-combination medications that can keep her nausea at a bearable level while not making her completely drowsy.

I must say, my mom was like a turquoise dream today- sporting the prettiest shade of green and blue zip-up sweater, along with a blue-ish hat, and white socks that had blue hearts on them. Her skin was glowing too, and she looked quite naturally beautiful, with not a minute older than that of a 40 year old. My observation, although she might erroneously disagree. :)

We'll keep you posted on anything new that comes up. Again, we wait and wait, praying urgently and constantly around the clock that these new cells will be kind, gentle, and accepted by her body as they become less and less dormant as these days tick on.

11 m.

Friday, August 16. Transplant Day!

Just a swift update. 

The donor transplant started today at 1 pm. Unsure of how long it will take (the stem cells are administered through a port in her chest), we do know that there are about 11 million new cells Kathy will be receiving. I can't count that high, so I'm just going to surmise that is a very large and a positive amount.

Of course, as you probably realize, today begins not the end of this entire process, but really just the beginning. Strict, strict public and germ restrictions begin today. Very meticulous food preparation and any other exposure to things that could bring in unwelcome bacteria or virus' starts now. We won't really have an idea for another few weeks at least with how her body has or hasn't accepted these cells. 

It takes a village to raise a child, and as I've now adapted into my new Katie-made-up mantras, it also takes a village to raise a miracle. So, please continue to unfalteringly (is this a word? it sounds right) pray that these new donor cells will be happy, obedient ones- that Kathy's body can accept them, that they can accept her, that these tiny but crucial bio-materials will do what they were originally intended to do! 

Without trying to get overly cheesy or overly spiritual at this very moment, a scripture tells us that we need to pray in order to receive our desires. The Brother of Jared in the book of Mormon casually says in a long prayer that the Lord has "given us a commandment that we must call upon thee, that from thee we may receive according to our desires" (Ether chapter 3, verse 2). 

So, yes, please pray specifically that this army of new cells going into her body might behave well and observe well, and be compliant to her body's functions. 

Dear 11 million cells, please be nice and good and happy in your new body. Thank you.

And dear Donor-man in Europe, thank you for your benevolence in going to a clinic and having your stem cells extracted. You are saving a life. Sincerely, Katie M. 

Thank you, everyone! Mwah. 

Looking Ahead

      It has now been almost four weeks since I've been home from the hospital.    I have loved being home even though there have been ups and downs with how I have felt.   It's been hard to measure any day to day progress, but as we look at week to week, I have made progress and have been able to get out a little.
        We met today with the BMT team and I am scheduled to continue with the tandem transplant starting on Monday.   I will receive chemo for three days, have a day of rest and then on Friday have a total body radiation and  receive the donor cells. The chemo and radiation are to suppress my own immune system so that I will be able to better accept the donor cells.    The chemo is not as toxic as I had in the hospital and so I will be able to do this outpatient.   I will also start immunosuppressant drugs next week that hopefully will reduce the chances for Graph vs Host disease.  I would love not to have that complication, and hoping that I will be in the 1/3 of patients who do not have trouble with it.
     So that could be a challenge that could start in a month or it's also possible that it may not  manifest itself for six months.    My other challenge will be to stay healthy and avoid any type of infection.  Infections can actually trigger GVHD, so it will be necessary for me to be even more vigilant about sanitizing and staying away from crowds and sick people.
      The good news we received today is that our 10/10 donor is a go. Out of 16 million potential donors worldwide, he (a 50 European male) was the only one who matched. We consider this to be a miracle.    We are so grateful to this person for being willing and able to donate his stem cells for me.    We do not know anything about him, other than that.   I hope that someday someone I know and love can 'pay it forward' by being a donor.   This is the best treatment for me at this time and if it all works out can allow me a much longer life which I want.
       The other good news is that the first transplant did what it was suppose to and that was to debulk the disease.   I had several tests yesterday, one of which was a CT scan.  It showed that my tumors had shrunk 50%.   And my heart and lungs have remained healthy.
       We have so much to be grateful for!!!   Thank-you all for your encouraging words and thoughts and prayers.  We have benefited from every expression sent to us in its many forms.  
        So we go onward in this very interesting journey that we never wanted.   We feel fortunate that we live in an age where there is treatment and hope.
Love,
Kathy
PS:  I'm glad that I've been able to update the blog and give Katie a break.    She does such a nice job and I may have to turn it back over to her.        
           

Getting Stronger

I have been home 10 days and it has been wonderful.   I feel that I turned a corner this weekend and have more strength and better appetite.   I have spent less time on the couch or bed during the course of each hour and love to be up and doing things.  Although, my body will let me know when it's time to hit the couch and rest.  I'm respecting that and I am not over doing in any sense.  My days are pretty lazy.  But if I can get the dishwasher loaded and unloaded and the laundry done, I am happy.  I can even read now as my vision is not blurry like it was in the hospital.  (The chemo does weird things.)  
     I hope to even start making some trips to the grocery store soon.   I can do this without a mask on as long as it's not peak time and I don't detect any sick people around. (It means keep a distance from people)   I would love to be able to even drive a little.  Maybe next week.  I'm not on any medications now that make me drowsy.  I just need a little more strength. I'm even going to start walking around the neighborhood for short periods.  
      I'm grateful for the help the neighbors and ward are giving me with meals 3X a week.   I've been able to eat more and it tastes all so good.   I really hate to be the center of attention, but so grateful for all the help we have received.   I am learning how to accept help and I am so grateful for every effort in my behalf.  
     We got word yesterday that I will start the next round in about 2 1/2 weeks.  It will start with chemo, and it looks like it will be outpatient.   I'm so glad for that.  The chemo isn't as potent as the last go around, so it will be nice to be home.   And then I will go to the hospital for another lengthy-probably longer than the last stay.
      Thank-you again for all your support and love.  We couldn't do this alone.
Love,
Kathy

Home Sweet Home

Hi All,
    I thought I'd write a little something as I am so GRATEFUL to be home.  I have been home 5 days, and although I'm very weak, I was able to do a little more today and feel that I will turn a corner.  
I had a good check up on Tuesday and go in tomorrow again.  Keep fingers crossed that they can take out this central line that is in my chest.  
     I want to thank all of you for your notes, emails, prayers, fasting and positive thoughts, etc.  as you have thought about me.   I have felt the power of all of those things and it has pulled me through.  I wish I could respond to every note, email, etc. but literally do not have the strength to do it.( Forgive me for not doing thank-you notes)   I hope you know how much it means to me to have your support. In the hospital the notes of encouragement kept me from going to the 'dark' side.  Thank-you. And I have loved all that I have received this week.  I'm keeping everything and have reread everything numerous times.     I  am deeply humbled by the number of friends and family who care about me.    I have a lot to live for!
     I also need to give credit to Doug and Katie and my sisters for doing so many things for me physically and emotionally and spiritually.   What would I do without them?    Since my two boys live out of state and would do the same, they are well represented.   I was lucky that my oldest came out last weekend and was here for my homecoming.  We talked, and cried together.  It was great to have him here.  And my youngest is coming this weekend.  I cannot tell you what it has meant to me for them to come out.  
    Doug is so protective of everything i do.  It is wonderful to have him as a companion.   I think you would all be impressed with how he's been able take over all the 'tasks' that I used to do and do them better than I ever did!
    Katie is a gem.   I even love to read what she writes because she expresses how I feel so well.   She has sacrificed so much to be with me and grateful to Chris as well, for allowing her service to me.  
     I am so grateful to be at this point in my treatment.   I love being in my home.  It is a refuge and I love everything that surrounds us.
   I'm not thinking too far ahead, but just want to get stronger before the next go around.
Thank-you for all the love you are sending our way.  Doug and I are overwhelmed with the outpouring and concern.
Love,
Kathy

Oozing Gratitude

It's been, really, a magnificent week. We know in the next few months and even years perhaps, that magnificent and miserable will be frequent and interchangeable companions but we will magnify the good because God has been gracious and aware. 

First things first. Kathy was released (is there a better, more civil word to use here?) from the hospital yesterday afternoon. Being free from the behemoth IV/antibiotics/anti- pain pole and freedom to sleep without interruptions from those dear CNA's for temperature and blood pressure reads (they are being obedient to their job duties, after all) has been liberating for my mom. Freedom! The hope  is that she can have a solid 4 weeks respite in her Salt Lake sanctuary before entering the battle again for Bone Marrow Transplant numero dos. I'd like to quickly hasten here, that although we know visits are wished upon with good intentions, that you still yet refrain from making any until further notice. It requires a tremendous amount of energy for her to visit and adds some concern and worry about unwanted germs and exposure to who-knows-what. These next few weeks is a time for healing, for peace, for solitude, and for refuge, so we thank you for your patience in respecting this and respecting these precious days of restoration. 

Second, and I make mention of this because it is really a marvelous manifestation of a dual reality, that being that miracles/blessings/tender mercies (call them what you will) not only exist but are divinely mandated, and thus, that God- our Heavenly Father- LIVES. Lives, lives, lives; is aware, is involved, is so very much apart of our circumstances. 

A couple of months ago during a medical consultation, the nurse coordinator for Kathy's BMT doctor informed us that Kathy did not have a 10/10 match in one of her eligible siblings (not to their fault whatsoever). Because of some unusual markers in her blood numbers, finding a donor in time, we were told, was next to impossible. Hence, in the last while we have been fully anticipating a green light for a newer, more contemporary procedure known as a haplo-identical where a half-match can be used. Well, during this last week, the nurse coordinator walked into my mom's room, grinning from ear to ear with the news that she felt like she needed to exhaust some more research for a 10/10 match, and that very morning, located that match somewhere outside of the US (we are assuming it's someone from Europe- perhaps England or Scandinavia?). If this registered person will agree to undergo the donor-procedure then this is the preferable route by Kathy's doctors because long-term data and results are more mature than newer Haplo transplant data can provide. Anyways, very miraculous; in a pool of millions of registered donors, a single person across the world was found in an extremely time-sensitive matter. Hello to heaven's opened door. 

Third. Again, exciting that she is home. We continue to pray for her body, that it does what it needs to, that she can regain strength, immunity, and the emotional vitality to continue to endure, which she's been doing so well already. We pray that her platelets will grow on their own, that her cells will do what they're supposed to, et cetera. Please be aware that she is on a very strict, low-microbial diet (google it) and in addition, should really be distanced as well from anything that carries/transports fungus, molds, dirt, and so forth (yes, that includes flowers and plants). 

Thank you, thank you, thank you for you. For your love, your good and POSITIVE advice (we say thumbs up to optimism and BOO to negativity), your prayers, your support, your thoughts, and your friendships. 

Little Miracles

We are only a few days into this new week and it feels already like a happier week.  

Last Wednesday, the 3rd, was Kathy's original/initial release-from-the-hospital date, though as you can imagine, many patients in her situation are obliged to stay beyond that because of major/minor setbacks that keep them there. But we are feeling uber grateful today, that as of this afternoon, her fevers haven't spiked or really made any progression, and that her appetite today has increased. Her lagging platelets have been a major issue as well, and today for the first time in weeks, her platelets hit 50 which was a big deal. Our prayers remain fervent and repeatedly often that they can stick at that number and then grow from that. We need her to reach a point so that her body can gear up for bone marrow transplant #2 in August.***

I was personally excited to walk into her hospital room on Sunday to find her watching some British masterpiece series. Last week, there was not a drop of energy to even THINK about watching TV so this was a happy little moment. She has also felt a little more up to emailing, texting, and even reading. 

Kathy is one solid rock-star; she continually, despite the horrific pains and discomforts of post-transplant and post-chemo procedures, along with the not-so-posh culture of hospital room life,  manages to always inquire about other people, how grandchildren are doing, and so forth. Always the thoughtful grandmother, she sends me home with treats from her treat drawer for my two older boys, Henry and Finn. She misses all of her grandchildren dearly though. 

Little miracles can lead to great wonders. Our hope is bright and she is doing more than just, "hanging in there". 

 

***Also, because Kathy's siblings were not 10/10 matches, and because searching for one out of the grand international bone marrow donor registry takes too much time, which time we don't have, we, along with the BMT medical staff, feel peace about proceeding with a newer, more contemporary procedure known as a Haplo-identical.  You are welcome to google search it, as at this very moment I am experiencing some severe mommy brain and don't quite know how to best explain it in writing, though it all makes sense in my head. You understand, right? :)As it gets closer, we will explain it in more detail.

No Walk in the Park

Well, July 3rd came and went with no discharge from the hospital as originally hoped for, though it's recognized how relieved we are that the hospital doesn't simply send home patients when things aren't completely in place. This week, unfortunately, has seen some complications/annoyances arise, i.e., a chest cough, continued nausea, and low-grade fevers. Until these things subside, or until we find out why these are happening, Kathy will continue to stay in the hospital. Physically, a good choice, mentally, a bit harder to cope with. 

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I come to you cyberally (new word for you, Webster!)/ electronically, to ask you for prayers this weekend, and even through Sunday as fasts commence. We need these complications to settle down in order for Kathy to be discharged, but we also need her body to have a break from these things before the next chemo/ bone marrow procedure begins, which, the Dr. has told us must happen within 4 weeks, so as to not give the cancer an opportunity to grow back. We are working against time, and time against us, thus, it's a very critical and crucial moment in Kathy's healing. Therefore, I do meekly plead for a heightened collaboration of prayers from you on her behalf and I profoundly thank you in advance for your love and support in this. 

Many have inquired how they can help and what they can do. It cannot be emphasized enough that prayers and faith really do go a very long way and in our eyes, are a mighty service of good. Additionally during this time while she's in the hospital, I know that really positive, and encouraging notes/letters are great to receive. 

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I want to be candid with you in saying that this experience my mom and Doug are going through is no peachy, spring walk through a park. It is unspeakably difficult, teeming with uncertainty, and indescribably painful both physically and emotionally and I  believe that alone must speak volumes about how our Heavenly Father sees my mom and the intense level of "refining fire" she is strong enough to withstand because this is intense. Nevertheless, she is doing it, and she is doing it with grace and love and compassion. 

Day 9 of the Transplant

Here we are, 9 days into the stem cell transplant.  We'll start with some bad news: the bad news is that the effects from the chemo has been quite harsh this last week in terms of severe nausea and other side effects. There has been some substantional bone pain as well, which, we are told that this is actually a good sign because it means the stem cells are expanding and doing what is needed. Overall, she is still managing fatigue, nausea, and bone pain- a big bummer but part of the process.

One other little happy news is that Kathy has gained a little appetitie back. Since food can nourish the body AND soul, this is a plus. We hope it continues to come back to replenish the energy her body is using in healing.  

She looks great and vibrant and is always dressed to the nine's when I have come to see her, which has been regular- she'll always be in a skirt and cardigan of some sort, with a matching hat. Some pillowcases that Bekah sewed a few weeks ago are bright and happy additions to the hospital room with their fun floral, colorful patterns, as well as a beautiful quilt Kathy's sisters contributed which rests perfectly on her bed. 

I asked my mom about what other BMT patients she has seen and how many might be on the floor. She thought that about 30 beds in her wing were being occupied by people in her situation, some of them, quite young: teenage-young. I thought that was a very sobering and humbling fact. These big mountains that so many brave people are called onto to ascend is really telling of the caliber they must have. 

Final note: I walked down the hallway this evening and was touched/excited to see a quote on the glass board (where visitors are permitted to write words of encouragment) from a name I recognized: Elder Christofferson. It read:

"The Atonement also satisfies the debt justice owes to us by healing and compensating us for any suffering we innocently endure". (General Conference April 2013, "Redemption") 

Good night!

Part of the Game

Not much new, but my mom is doing okay! Most of the time she is pretty wiped out, which is to be expected when your white blood cells are zero. Sores in her mouth are bothersome, but hopefully on the mend here soon. Her nurses have been attentive and sweet. You nurses out there will have a special place in heaven, that's for sure. Amazing, caring people they are. 

Thank you from the top and bottom of our hearts for continued faith and prayers. I always have loved the following scripture:

"The effectual fervent prayer of a righteous man availeth much" (James 5:16)

True that. We love your prayers as we continue to wait and wait for results of the first stem cell transfusion. 

Post transplant Saturday June 22nd

Hi Everyone
     I am feeling ok today and Katie is in California with her family trying to find a place to live.    Today is our 12th wedding anniversary.    Hard to believe that 12 years have gone by so fast and here we are today.
     The chemo is over with, and my cells are in.  I'm now in a state where my counts are low and still have the side effects of the chemo.   They are watching for infections, need for transfusions and any ache or pain.   I have very low energy and there were times yesterday where I couldn't  raise my head.   I'm sure there are good days mixed with with some challenging ones ahead.  
       As hard as this is, I'm grateful for modern medicine.  And I really like the team up here.  I've had some great nurses.   On my second day of transplant, I had a cute nurse who was sticking with me for over 4 hours to get the cells in.    I was having some recatons to the preservative in the cells, so it was a very slow process.   This cute nurse is 9 months pregnant.  The baby is due in 3 weeks.   It was obvious during the later part of the process that she was having contractions!     She stuck it out with me, even when she was in pain,she attended to my needs.   She  went home, and the contractions went away, But, I kept seeing it as a good omen. Life
    I miss talking with you and I'm sorry that I don't have the energy to do much.    I know you all understand about no visitors.   It is risky and I'm trying to protect myself from too many 'outside' germs.  
     The view of the the mountains from my room is making it bearable.  I've already have seen the bright greens of June, fading into the lull of summer.    The snow on the peaks of the mountains are almost all gone.   And I watch life down 8th Ave. where there must be a little cafe or ice cream store where people are going in and coming out looking satisfied.    
     In a situation like this, I have found I have to look for all the good things, otherwise it would be all just too overwhelming!
      Thanks for all your best wishes and love, and prayers and positive thoughts.  Every day a better day!
Love,
Kathy
       

First Day

Today was the first stem cell transfusion day and tomorrow is the second and final for this first BMT round. After tomorrow, it's another few weeks in the hospital to monitor and take note of how the stem cells behave and grow in her body. As my mom said the other day, "it's a numbers game"-- everything about the stem cell's behavior is evaluated from multiple blood draws a day. 

It is a crucial and important time, and we ask for your faith and prayers that her body will accept these, her own harvested stem cells, and that no complications arise. 

Well, that does it for today!

Ta ta.

The News of Today

Hello cyber support group/world.

I'm sitting here with my mom at the hospital and wanted to supply you all with a mild update on things.

She has 6 days of heavy chemo administration under her belt. Horaay! Today, Tuesday the 18th, is a rest day for her body and tomorrow will be the first day of the stem cell transfusion (not to be confused with a donor transfusion- these stem cells are her own that were harvested some time ago during a more healthy period).

The nausea has been a problem but the nurses are trying to keep it minimal and under control. Her numbers (red blood cell count, white blood cell count, etc) appear to be where it should be and the disease tumors DO seem to be decreasing in size. All signs thus far  indicate that things are going in the right direction.

There's a chance for a reoccuring dose of chemo, but hopefully the worst of that is behind her.

We sure love all your prayers and support. I know that sounds a bit cliche-ish, but it couldn't be more true.

Ciao. 

Wednesday June 12, 2013

Kathy's first day at the hospital in her first words:

"So the line is in.    When we got here this morn, we were told it could not be done unless my platelets were at least 50,000.  Mine were 18 000 They did two bags and I got up to 65,000.  Everyone was amazed.  We were hoping for at least double.  I felt an overwhelming feeling of gratitude and answer to prayers this morning.   Thank-you.  I'll go up to the room at noon". 

And then received not too long afterwards:

"Ok maybe not a miracle, but a bonus.   Room with a view of looking east towards the u."

Silver linings in these storm clouds, and we will continually bug Heavenly Father for more.