First Anniversary of Autologous Transplant

June 12th was the anniversary of my first transplant last summer.   I have come a long way and so grateful for every day that I can go outside and be a part of my loved ones lives.    All the testing to see how the transplants worked will be in August when we approach the anniversary of the donor transplant. So for now, I am continuing to get stronger and I finally feel better from the last hospitalization almost 2 months ago.   Healing just takes longer for me.   And I'm still immune suppressed.  I am out and about, but need to wear a mask in crowds.    Doug has helped with the garden this year as I'm not to be digging in dirt or leaves or anything with potential mold.

We've enjoyed having our children and grandchildren visit.   We have done lots of hand washing and nobody has been sick.    We have more children coming in town in July.   And I may take my first road trip to Jackson with Doug in July.  He has a conference and the change of scenery will be great.    

The tacro taper is starting to happen-I hope this week.   This will make a big difference as I get stronger.    It's a drug to suppress graph vs. host, but also leaves me immune suppressed.  What is someone to do?  

What did I do on June 12th this year?  (Besides celebrating Katie's birthday.) I went to Hatch's Chocolates on 8th Ave and bought some ice cream.   Last year at this time, 8th Ave was the view from my hospital window.    So I finally had to go in and see what it was like.   I looked up to see where my room was for a month and felt such gratitude that I have come this far and this summer is so different.
Thanks everyone!
Kathy  

Time Marches On.....

It's been nice to be out of the hospital these last few weeks.  Although, I've been fighting another virus and has kept me from getting my strength back.   I am doing better and the medicine I'm taking is working.  If it's not one thing, it's another.  I'm rolling with the punches and will be pleasantly surprised when I can travel and be a little more 'normal'.  My first trip will be either to Minneapolis (both Andrew and Anthony have jobs there) or to Carlsbad, CA to see Katie and her family.   I miss Katie and her family so much.   Their visits really got me through this past year.   She did stay out of harm's way with the fire this past week, but it was scary, and the fire was a little too close for comfort. (At least for me-I was on pins and needles all Wednesday afternoon.)  The fire happened all so fast.  Katie and I had talked on the phone that morning and we were laughing about mundane things and then I got a text from her a couple of hours later saying the fire was five miles from their home and unpredictable.   The packed their valuables (children) and went to a beach farther away where they could see the smoke, but not smell it.    Things can happen so fast!

My greatest disappointment to date is that I could not travel to Andrew and Anthony's graduation. It was something the doctors and I had been talking about and hoping I could go since February.  But I know I made the right decision. Andrew's graduation with an MBA was Friday in Iowa City and Anthony's graduation with an MHA/MBA is tomorrow in Minneapolis.  Luckily, I have a very supportive husband who went anyway and gave them love and support.  Congratulations to these two darling boys of mine.  They have worked hard, been modest about their achievements, have worked hard while having children and supporting their wives in their work.   They could  have not  done what they did without their wives, Kathleen and Bekah.  I love these girls and so grateful they are part of our family.

My daughter in law, Kathleen, sent this to me a few weeks ago.  I love what it says.  Of course, I'm hoping my cancer is gone, gone, gone.   But, it sums up how I feel about the dreaded disease.

CANCER IS SO LIMITED....
IT CANNOT CRIPPLE LOVE.
IT CANNOT SHATTER HOPE.
IT CANNOT CORRODE FAITH.
IT CANNOT EAT AWAY PEACE.
IT CANNOT DESTROY CONFIDENCE.
IT CANNOT KILL FRIENDSHIP.
IT CANNOT SHUT OUT MEMORIES.
IT CANNOT SILENCE COURAGE.
IT CANNOT REDUCE ETERNAL LIFE.
IT CANNOT QUENCH THE SPIRIT.

Grateful for life and for all of you.
Kathy

I'm home

I was able to come home tonight-Tuesday.  It feels good to be home after 6 days in the hospital.  I'll continue to go to the clinic everyday for labs.  My electrolytes got out of whack, and so everything will be checked until I'm back in sync.   I am grateful that I got over this virus.    Even though it came on very fast, within a few hours I was so dehydrated that I was experiencing some other complications.   But, I have bounced back.   This took a lot out of me, but every day I'm feeling better.
So the roller coaster continues with hopefully a sense of humor, patience and lots of hope. And gratitude for answered prayers.
Kathy

FINALLY....AND THEN

APRIL WENT MOSTLY WELL.   I WAS PUT ON AN ANTIFUNGAL THAT I SEEMED TO HAVE A REACTION TO, SO I STARTED AN IV ANTIFUNGAL.    FINALLY WE DECIDED TO USE AN ORAL SUSPENSION. SO SINCE I WOULD NO LONGER NEED MY CENTRAL LINE, I WAS ABLE TO GET IT OUT LAST WEEK.    I FELT FINE AND ALTHOUGH DOUG CAME HOME FROM BOSTON SICK, I THOUGHT I WAS OUT OF THE WOODS.  WE HAD BEEN SO CAREFUL.    WELL...DURING THE NIGHT ON TUESDAY, I GOT VERY ILL.   I THREW UP AND HAD DIAHREA EVERY HOUR.   I WAS SO WEAK AND DOUG WAS IN LOGAN.   LUCKILY ANTHONY CALLED ME AND I HAD HIM CALL MY NEIGHBOR WHO HAS A KEY AND SHE CAME IN AND HELPED ME WITH SOME LIQUIDS.  BY THE TIME DOUG GOT HOME I KNEW THAT I NEEDED TO BE IN THE HOSPITAL.   SO WE IMMEDIATELY CAME UP TO THE 8TH FLOOR AND HERE I AM AND I AM MUCH BETTER AFTER BEING ON AN IV NOW FOR 3 1/2 DAYS.   I WAS DANGEROUSLY DEHYDRATED AND MY KIDNEYS WERE REALLY STRAINING.   IT'S TAKEN A FEW DAYS TO BALANCE EVERYTHING ELSE.   I WILL GO HOME WHEN I NO LONGER NEED EXTRA HYDRATION.   

I LEARNED SOME LESSONS THROUGH THIS..  I KEPT THINKING THAT I WOULD GET THROUGH THIS, BUT I HAD NO IDEA HOW HARD THIS VIRUS COULD HIT ME.   IT HAS BEEN RULED AS A VIRUS.    AND I NEED TO HAVE A BETTER BACK UP PLAN.  I THOUGHT I DID, BUT THERE WERE SOME CHANGES WITH PEOPLE'S SCHEDULES THAT I KNEW ABOUT AND I DIDN'T WANT TO BOTHER ANYONE.  BAD IDEA!    

SO, I'M HANGING OUT HERE, AND AT LEAST I'M NOT ISOLATED.   DOUG COMES EVERY DAY AND IT'S NOT BAD.   I'M FEELING MUCH BETTER AND HOPEFUL TO GO HOME ON MONDAY.  ALL DEPENDS ON HOW MUCH LIQUID I'M LOSING.   

I HAVE LOVED SPRING.   IT'S DONE SO MUCH FOR MY SPIRITS.    I'VE BEEN MORE ACTIVE AS WELL.   I SHOULD HAVE BEEN MORE CAREFUL.   STILL SO REMINDED OF HOW CAREFUL I HAVE TO BE.   

LOVE TO ALL AND GRATEFU L FOR LIFE
KATHY
PS KATIE MOVED TO CA.  SHE IS MISSED, BUT NEEDS TO BE THERE.  I'M COUMTING THE DAYS THAT I CAN ENJOY  THE CALIFORNIA SUN AND SAND.

Home Sweet Home

I got home this afternoon after 5 days in the hospital, 5 days in isolation and 15- 2 hour treatments. We'll hope that this helps.    I'll have the virus for perhaps a weeks, but should be getting better.
Thanks for all your love and concern.
     

This is my last treament Sunday afternoon.   I was so ready to be done.  Soon this will be a distant
memory.

A Set Back

Hi Everyone:   I'm back in the hospital for five days.   I went to clinic on  Tuesday and had a little cold.  They did a nasal swab to see what viruses I have.  When I got home I got a call at 5pm from the PA and saying that I had RSV (plus the rhino virus and corona virus)  and needed to be hospitilized for treatments for the RSV.  If not treated, it can quickly turn into pneumonia for bone marrow patients.   So, I was at the hospital at 7:30 pm that night and got my first treatment at 10 PM.   The treatments last for two hours, every eight hours.   I'm not getting quality sleep and I'm tired. But, it's better than the alternative of being in the ICU with pneumonia.    
    The treatments are not painful, but terribly inconvenient.    I am in a tent on my bed breathing in the medicine via an oxygen mask.   I then have to take a shower, and sheets and clothing have to be washed. Everyone wears a mask in my room and I'm confined to my room.  
     I'll be very glad to go home hopefully on Sunday afternoon.   Until next week.
Kathy

Turned Another Corner

It is nice to say that I am feeling so much stronger and can tell that I am so much better than I was last fall.  I'm still on a lot of oral meds, but my IV has been reduced to one hour a day.  I started out doing 6 hours a day, so I am feeling less tied down.  

I am going out more, running errands and shopping.   I do have to pace myself and in most places, I still wear a mask in public.   If stores are not crowded than I'll take it off as it is difficult to wear.  

I  go weekly to the hospital, but just this week I was able to go in for blood work only.   I'll see the doctor now on an every other week basis.  That is very encouraging and hope that the tapers for the medications start and the central line will come out.   I'm hopeful that will happen before summer.  

My hair is growing back.   It is super short and I'm no longer wearing hats everywhere.   It came in as startling white/silver.    Everytime I looked in the mirror, I jumped.    I really did not recognize myself, although many people thought that I 'rocked' that look.    Last week, I had it dyed to blonde.   It will be a work in progress to get it to the right blonde.  It is really hard to dye white hair.  
Funny thing-in the hospital I really didn't think I would ever dye it back.  I just wanted hair.   I guess I must be getting better, since it matters to me.

Everyone is still so nice and concerned.   I appreciate all the good and positive thoughts sent my way.   Yesterday, a nurse told me there is joy in his job as he sees that what they do in bone marrow patients is to give us a few more years.  I told him that I certainly hope I get a few more years!   I'm looking at a long life!   I have to have that hope!  Life is good.    

Same Old, Same Old

    I wish I could report that this process was buttoned up and I was off all the medications and IV and going out in crowds.  Luckily, I'm reminded every Monday at clinic that I have to be 'extremely' patient.    And I'm learning that it's no use to even have a time table in my own head as there are always little bumps along the way.   But, the good news is that the GVHD skin rash has now diminished and I did not have to go back on high dosages of steriods.   It has delayed the taper of other medications.  So, I still avoid crowds and wear a mask in most public places.   Although, Doug and I have found that a late afternoon dinner at a good restaurant is safe and early matinees are usually empty of people. I'm walking on good air days and try and get out of the house at least once a day.  
    We are looking forward to a new grandchild this week.  Doug's daughter Emily is expecting another girl.   We loved having Anthony's family visiting for 3 weeks, while Anthony went to China for his MBA program.  (They stayed with Bekah's family.) They missed one of the polar vortex's in Minneapolis, but got it this week. (-40 wind chill).   Andrew went to Dubai with his MBA program and Katie and Chris are starting to get ready for their move.
     The blue sky is a rare sight this winter, but we have had more than most as some days we are above the inversion.  The longer days are also really nice.   It's during this time of year that Spring cannot come soon enough!  
      We will always be continually grateful for all the inquiries and concern about me.   Thank-you for your interest.
Love, Kathy  

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.