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.