Katie Cramer Donor Drive » Finding Katie a bone marrow donor.

Well, it has been said that the journey of a thousand miles begins with one step.  That means we only have 998.5 miles left to go! Step one: getting Katie into remission — check.  Step two: getting a transplant date set – half-check.  Here’s the scoop:

A tentative date for the stem cell transplant has been set for the end of September, with admission to the hospital one week earlier.  The date is tentative for several reasons: Katie has a spot on her lung which could possibly be scar tissue from the recent fungal infection (which would be great) or an active pocket of fungal infection (which would not be great at all).  The plan is to wait and do another CT scan of the problem lung in two weeks, with the hopes (and prayers, too, please!) that the spot is gone or has reduced in size.  If it has not disappeared or has grown larger…well, I choose not to go there now!  The doctor said she would not do a transplant if Katie had a possible infection brewing in her lungs. Period. In addition, the most recent CT also showed some spots on her liver; her local oncologists think the radiologists are being hyper-sensitive in their reporting due to her medical history, and they really don’t see spots where the radiologists indicate there some; but, just to be sure, Katie will have an MRI of her liver next week.  No word yet on the GFR test of her kidney function, but I’m not anticipating anything wrong there.  The cardiologist at Stanford felt that his team could manage the temporary stress caused to Katie’s already weakened heart, which was great news.  However, the transplant doctor expressed her opinion that the cardiologist is a very optimistic individual, and she thinks we should count on Katie most certainly having heart complications during transplant.  There was mention of intubation, infections for which there is no medicine, and ICU stays.  I brought up my concern about the length of time this process is taking and what happens if there is a relapse of the leukemia before she can get to transplant. The urgency was acknowledged but, without addressing these other issues, there would be no going forward.  So, the transplant doctors are formulating their treatment approach, while we are back in Sacramento trying to address their concerns.

Have you ever taken pictures while on vacation, then looked at them when back at home and thought, “There’s something missing.”?  You know - the smells, the sounds, the feel of the air and sun on your skin, the sense of wonder?  Well, the paragraph above is something akin to a picture (though not of a vacation!).  There is a lot not said; things that can not be conveyed in mere words.  You have to be there to know what it was really like.  (And some of you reading this post know exactly what I’m talking about.) I hope the rest of you will never need to know.  As the doctor spilled out all the probable complications, I kept saying to myself, “No. You don’t know my Katie.  You don’t know my God. You don’t know the stuff that my Katie is made of.  You don’t know what she has pulled through before: abandonment, malnutrition, loss of culture, four rounds of intense chemo, heart failure.  She may face these complications, but she is strong, she is a survivor - she will pull through it all.”  Denial on my part, or just a more positive perspective?  I’m not sure, but it’s working for me!

I can honestly say that I am both “shakin’ in my boots” and absolutely excited about seeing what God is going to do through this experience, especially in Katie’s life.  It’s a sad and painful thing to see any child – especially your own - in danger, hurting, being threatened, or just losing out on normal life experiences.  But, there is hope when I look beyond the “event” and think about how this experience will be used for good, for God’s glory.   That is one wonderful benefit that can come out of this whole ordeal.  I am convinced of that.  I can’t change what it is, nor can I control the outcome.  The only thing I can do is keep a positive attitude and trust the Lord for His will to be done. It’s not easy and I’m not always successful, but I keep trying!

Regarding the donor-search:  Even though the search will continue for a 10/10 match, the medical workup on the 9/10 will now begin.  That will take about three weeks to complete.  If the gentleman (for we know the donor is a 50 year old man) agrees to give marrow, the doctors will go with a marrow transplant; if he chooses not to donate marrow, they will use the umbilical cord blood units that are on hold for Katie.  (The doctor does not want to use peripheral stem cells in Katie’s situation.)  Our prayer is that the donor will agree to give marrow, as that seems to be the doctors’ first choice if given the option.  Will you please pray for God’s best, whether it be marrow or cord blood? 

Our stay at the Ronald McDonald House was brief, but so very nice.  It is such a wonderful resource for families in a medical crisis!  I remember putting money in those little boxes that often sat on the counters of McDonald’s restaurants.  (Our McDonald days seem to be over now–not sure if they still use those little boxes to collect money?)  Never in a million years would I have thought that one day we would be staying in one of those houses!   So, if you happen to be in a McDonald’s restaurant, and you happen to have a few spare coins or bills to put in the collection box, go ahead and drop them in - in honor of Katie and so many others who have been blessed by this wonderful charity. And say a prayer for those staying in the RMHs all over the world, and pray that you may never be blessed to stay at one.

While down at Stanford, Katie and I went over to the university twice and walked around the old center quad.  The first time was at night under a full moon.  The weather was beautiful and the moon lit up the entire square.  It was so beautiful, we went back the next day after her GFR test and appointments, and we walked around again, waiting for the rush-hour traffic to die down before we headed back to Sacramento. I’ve attached a few pics at the top of those outings. 

PRAYER REQUESTS RECAP:  For the spots on Katie’s lungs and liver to disappear, for the 9/10 donor to agree to donate marrow, for God’s will regarding the donor or cord blood option, and for Katie not to relapse while waiting for transplant 

In faith,

Sherrie

Hi Everyone.  Last week’s clinic visit was very positive!  Katie is officially in remission (triples YEAHS!), her lab counts are mostly in the normal range and improving, and the CT scan  showed the fungal infection completely gone (except for one small possible “hole” which could just be scar tissue, or an encapsulated pocket…unknown).   The scan also showed something on the liver, but it was so minuscule that the oncologist couldn’t see anything ; he wasn’t worried about it at all and felt like the radiologist was probably being hyper-vigilant.  Thank you for your prayers for Katie, and please continue to pray that those little “liver spots” are nothing.  

The appointment at Stanford has been rescheduled for next Thursday.  Katie will have a GFR test (for kidney function), then we will meet with the cardiologist and then the oncologist.  It will be a very long day, but we are hoping to come home with a plan for the transplant.  It has been four months since we learned that Katie has relapsed, so we are ready to move forward with this transplant.  It appears more and more that she will either have a transplant from the 9/10 donor they have found, or have a transplant using double cord blood units. 

So while we will continue to pray for a 10/10 donor, we are daily learning to surrender Katie to God’s will.  What we think of as perfect, a 10/10, may not be what the Lord knows is perfect.  It is not easy to let go of your child and put his/her life into God’s hands…but it is a lesson we must continually practice over and over many times a day.  I am reminded of the verse from Isaiah:

“For my thoughts are not your thoughts, neither are your ways my ways, declares the LORD.  For as the heavens are higher than the earth,  so are my ways higher than your ways and my thoughts higher than your thoughts.”  Isaiah 55:8-10

 Just a quick reminder for those of you in the Sacramento area:  The Zumba event is this coming Friday, August 27th, at 7:00 PM, at Arcade church,  along with a donor drive starting at 6:00 PM.  If you would like to sign up to be a donor and have fun “zumba-ing” come on out and join us!  I’m pretty sure Katie will be able to there, too. 

Thanks to everyone for the support you have shown us in so many varied ways.   God bless each of you.

Sherrie

Katie’s appointment at Stanford has suddenly been moved forward to…hum… probably next week…not sure at this point.   Seems the transplant doctors would like more tests run on her prior to the oncology visit, and also due to scheduling a cardiology test prior to a visit with the cardiologist.  I’m trying to go with the flow on this one as there is no other choice.  But, these last minute changes had me tossing and turning most of last night thinking about “communication” , and how it can either make our lives better or more complex and challenging.  Too much communication, too little communication, miscommunication, overload on communication! Well, enough said about communication – at least in this paragraph!

So, after numerous phone calls (while sitting in a car and standing outside a grocery store with two very hot and tired children), and a visit to the pharmacy to get an item they don’t stock, all in an effort to quickly get more information on the status of Katie’s internal organs, (partly for the appointment we had today which has now been moved ahead to next week), we had to “encourage” Katie to drink a “bunch of banana” contrast for a hurriedly sceduled appointment for a CT last night at 8:30 PM.  Let’s just say that there was some tough love going on at our house last night with Katie since (1) she doesn’t like bananas, and (2) her stomach has shrunk since her hospital visit and it can barely hold a half of milkshake without feeling full.  Hopefully, the CT will show what it needs to show since she barely got down half of what she was suppose to drink.  (Read between the lines: too little, too much, mis- and overload of communication all in one day.)

OK, on a lighter note, our friends, Steve and Susie McNitt, are participating in a Team in Training Marathon (Nike Women’s Marathon, October 17th, in San Francisco) and are raising money for the Leukemia and Lymphoma Society.  Their son, Caleb, had AML – the same type of leukemia Katie had/has – relapsed three years post-treatment and went through a bone marrow transplant last year - just like Katie did and will.   (BTW: Caleb  is doing very well now and returning to school this fall…YEAH!)  Both Steve and Susie have been a tremendous support to us during these past four years, and we would like to ask you to support them in their efforts to raise money for the L&LS.  They are running in honor of  their son, Caleb; Katie; and another young man whom they met while staying at Stanford.  Please check out their fundraising pages here and donate if you are able.  Thank you!

http://pages.teamintraining.org/sac/nikesf10/smcnitthkn 

http://pages.teamintraining.org/sac/nikesf10/smcnitt

God bless you!

In faith and with hope, we are continuing to pray for a 10/10 match for Katie.  Will you continue to pray with us? (This is the best kind of “communication”!)

Sherrie