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