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.