Big Update! Light at the End of the Tunnel!

I do realize that I never updated you after the NIH trip to Bethesda, MD.  It was such a rough recovery after coming home that I was just too sick to do so.  As it turns out my adrenals were shot and I had nothing to withstand the stress of travel.  So daily I laid on the couch moaning in stomach pain, and fighting nausea, many times vomiting and diarrhea.  After 2 months of this, I ended up in the ER and explained that I thought it was an adrenal crisis and to give me a hydro-cortisone shot which indeed helped stop the situation.  This after having had my stomach and colon scoped just to make sure this had not been a GVHD attack.  It wasn't.

Photo of me getting acupuncture at NIH in Bethesda.  First time :)  Since coming home I've had a very good acupuncturist work on me.  It's actually quite relaxing after the initial pokes!  A TIME magazine feature on chronic pain noted that the only effective alternative therapies for chronic pain were physical therapy, massage, acupuncture and yoga, and biofeedback, as well as two Chinese herbs that were found to be more effective than a rheumatoid arthritis medication. The names of the herbs elude me at the moment, but you can find more info at the link to the article.


So despite the hardship that was going to NIH, the resulting information and clarity was helpful in that they showed me what was and what wasn't GVHD in the body.  I have GVHD but limited to my skin and oral mucosa.  That is great news!   All the other stuff I've dealt with over the last 2 and a half years has been due to medication side effects and adrenal insufficiency.  Not so great, but something we can work with and hopefully overcome.


So ever since my birthday, I have felt like my old self which is really saying something since I just turned 40.  My energy is so much better and after some regular acupuncture and massage I have been regaining my muscle activity and sensations in my feet.  I started walking and am utilizing my former walk-to-run program which I invited everyone who wants to join me (we're just starting Week 3 now, but you can join anytime and start at Week 1)...I made a Facebook Page which has the schedule for the program and other tips and encouragements along the way:  Join my Walk-to-Run in 18 weeks group on Facebook  


The other great news is now that I'm feeling better, we're able to serve the Lord in new ways that I didn't think possible just a couple months ago.  Friends of ours from church, named Gentry and Luis Zuzunaga, are adopting a 3-year-old girl from Russia who has down syndrome.  They've fallen for this sweet, adorable child named Maria, and feel God is calling them to bring her home.  Since we cannot adopt at this time ourselves, we would love to do everything we can do live out the verse in James that says,  "Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world."

What better way to do that then to help out a 90-year-old woman with her home repair needs while raising money toward the $20,000 needed to bring Maria home.  Mike, Adam, Trevor and I plan to do just that.  We're teaming with the Zuzunaga Family and a ministry called Both Hands (one for the widow and one for the orphan).  Please consider sponsoring the English Family in our project to help Louise, a local 90-year-old woman who served the Lord many years as a missionary and who has many home repair needs to be attended to by our team.  The money raised will go to bring Maria home to the Zuzunaga Family.  To learn more about this project, about Louise, Maria and the Zuzunagas, as well as making a donation to support us visit: http://bothhandsfoundation.org/luis-and-gentry-zuzunaga.aspx  - Your prayers are very much appreciated!  

P.S. Some of you will be receiving a letter in the mail with our flyer and a section to cut off and send in if you'd like to support us in this ministry. If you want to support the Zuzunagas through us, but don't receive a letter, you can do it through the link above. It's all to bring Maria home and help Louise!

UPDATE to Up, Up and Away!

A quick update right before I head out the door--My corporate angel flight got cancelled last minute which at first made me think my plans with Kelly for the weekend were doomed.  Then I searched and found one last ticket on a US Air flight from LAX to Richmond which took me into Richmond at the same time and day as originally planned and for only $445 round trip after taxes.  The blessing of all of that was a dear friend popped by and dropped me an envelope...a gift of $200 to put toward that airfare!  Amazing.

Then I was kind of scrambling to find hotel in Bethesda during the Mon-Fri time I'd be there...close enough to get shuttle service and not need a car.  However, so many things were booked and most hotels were $250/night and up!  This morning though, I called the International Guest House and talked to the inn keeper. It's run by a church group, is a bed and breakfast and is only $40/night.  Imagine my delight when he said he had just one room for me and would actually be moving me into another room mid-week b/c they're kind of booked.  It's truly amazing.  They have international guests and group breakfasts, and at 9pm they sit around this great old home and have tea and cookies and conversation.  I'm so looking forward to the experience!  I've read great reviews of this place and it's only 4 miles from the White House and on the bus route that can take me to NIH in 30 min.

So that's all for now - going to L.A. right now to enjoy Cinco de Mayo with my friends the Dahls.  And head out to the airport early early to see James McMillan, Mike's best friend from high school, who lives in Charlotte, NC where I'm flying into...he's flying in on the same airline at the same time from elsewhere and we'll meet for coffee at the gate before flying out again 40 minute later!  Then off to Richmond to stay with Kelly for the weekend and her Dad in Centerville (my old home town) on Sunday night...Sunday Kelly and I are going to visit our old stomping grounds :)

Love to all!  Krista

Up, Up and Away on a Corporate Jet to the East Coast!

Hoping for a sweet ride like this one!

I was researching treatment options for chronic Graft-vs-Host disease which followed my bone marrow transplant and ran across a study being conducted at the National Institute of Health in Bethesda, MD.  It's a historical study, but because GVHD affects all areas of the body inside and out, there is a team of specialists in every field who I will meet with over four days and receive all kinds of tests...CT scan, MRI, echocardiogram, pulmonary, dermatology, biopsies, oral, gynecological, etc.  They meet together as a team when we're finished and decide the best treatment options for me, write a report and send it to me at home for my doctors.  

It's a great opportunity to get everything looked at in one shot and get the cutting edge options that are available to try.  The great news is that the flight out there is free for me as it will be on a corporate angel flight which is a network of Fortune 500 companies who've donated their extra seats when they happen to be flying from your area to where you want to go if you're a patient going to an NIH-sponsored treatment center.  I think NIH counts!  :)  

I couldn't plan the trip because it is just what comes up in the system right before you are supposed to go.  I can't tell them what day I want to go or pick the city of choice.  But, the great thing is God is in control and cares about these details for me.  As it turns out, I will be flying out of Long Beach this Friday, the 6th.  It seems earlier than I'd plan because my appointments don't start until Tuesday, the 10th.  However, it happens to be flying into Richmond, VA, home of my best friend from high school, Kelly Koch Jones.  That right there is Providence, my friends!  We're going to have a wonderful weekend together before I go up to Bethesda on Monday.

I don't have a return flight home yet, but that will surely come up just right and just in time.  I am all for adventure and this whole trip sure fits the bill!  I'm going to relish in it for a week even though I'm going to miss my family terribly.   I was hoping to bring Mike and the boys since I have a seat for a companion to go with me, but the corporate jet rules are no children under 21 unless they're a patient.  And with all their grandparents gone on their own vacations, and therefore no childcare, Mike is staying home with them.  That's alright...we'll go again in the future when they're older and we can do it as a family and see more, but free would have been nice too!

As it turns out I'll be staying in a hotel near NIH so I don't have to rent a car (hopefully).  NIH reimburses up to $50 a night for hotel and $8/day in food.  That's will feed the rats of NIMH, but not me and only rats would stay in a $50/night hotel!  The only hotels in that area that are available are $200 a night so please pray for provision for this as we are not in the green yet. 

I'll take photos of the trip and try to update you on what it was like to be Queen for the day...riding VIP on a corporate jet -- don't I feel like all THAT!?  Can you tell I am a little excited? 

This is my theme song for the trip: Oh Virginia by Blessid Union of Souls - so great!

I'll be meditating on this verse as I fly from the west to the east coast even though I know that the Psalmist is referring to a much wider span!  High in the air, I will feel His love envelope me as I imagine how small I am compared to God and His love as I'm whisked across the sky...may you be caught up by Him wherever you are!

Psalm 103:11-12

For as high as the heavens are above the earth,
   so great is his love for those who fear him;
   as far as the east is from the west,
   so far has he removed our transgressions from us.

Trying to Spread the Message of Hope...Ultimate Blog Party 2011

Welcome newcomers to my blog!  I’m participating in the 2011 Ultimate Blog Party in order to spread the message of hope and encouragement to those who are seeking it.  

My latest post, How a Horse Named Hero Changed My Life, which has received the most comments I have ever had on one post, is a good example of what I write about here.  I am a homeschooling mom and survivor of leukemia (twice) who had a bone marrow transplant in 2009.  It has been a long recovery process over the last two years, and my husband and I blogged about the whole thing, even in the darkest hours when it looked like I wouldn't make it.  We offer encouragement and support for those who are suffering.

Comment below if you found the blog through the Ultimate Blog Party and thanks for visiting!

How a Horse Named Hero Changed My Life

It has been two years since coming home from UCLA.  That photo was me the week of Valentine's Day 2009 in ICU in an induced coma because all my organs had shut down.  My friend is smiling because that's what you do when someone is taking your picture.  I had no clue what was going on or I would have smiled too.   It's a miracle I am here, yes.  That's enough to make you smile.  But the miracles continue as I walk with a marvelous God.


It's amazing that you still pray for me!  Many think because the bone marrow transplant was 2 years ago, I should be "fixed" by now.  I don't have AML leukemia anymore, but the side effects of the treatment, namely what comes with Chronic Graft vs. Host Disease following transplant are worse than most illnesses.  

I have been in the dumps lately, completely discouraged as my face was falling apart - literally!  Large patches of skin falling off and leaving tightness and burning, red skin beneath...painful and embarrassing.  I was actually feeling shame for looking so ugly - no amount of lotion or ointment could cover it up - it's GVHD (Graft vs. Host Disease), a result of my bone marrow transplant.  The transplanted immune system (from another human) doesn't recognize the body it's in and attacks it, actually trying to reject the skin organ.  It's the #1 cause of morbidity in transplant patients sadly because it can go into every organ. 


 The outward appearance of it had been affecting me emotionally, increasing in intensity until the week of Valentine's Day when it got so bad that I started not even wanting to see people.  I felt very unloveable and unacceptable.   This of course was untrue, but that was the "voice in the head" which I attribute to the enemy of our souls who wants nothing more than to destroy us from the inside out.  

Well, thank you all for your prayers -- God is always there, always watching, always cares.  He spoke to my heart on that Thursday, February 17 through a radio show on Focus on the Family featuring stories of rescued horses and renewed hope...truly an amazing segment that everyone ought to listen to!  For me, I'm not a huge animal lover like some are, but after this show I am more so!   


One particular story, grabbed my heart so much I almost had to pull the car over.  It was the story of Hero the horse. I'll let you listen to the story yourself at the link in the paragraph above, but what God spoke to my very heart that day was life-changing.  In an overwhelming moment, God poured out love to me and spoke deeply to my heart that he loved me, that He had not forgotten me, that the problem with my face, the peeling, burning, redness, was all part of my ministry...that they are the scars I bear from my battle.  That He is the ultimate Hero and was not ashamed to bear scars and come back to show love, redemption, hope to us, therefore I no longer need to be ashamed of these scars.  My whole ministry through the battle was about love and hope and redemption and sharing that with others, and here I thought the GVHD which was visible on my face, making me "ugly" was not a part of that.  Somehow it didn't count.  It all counts.  And in that moment in the car, with tears streaming down my face.  I felt the incredible burden lifted, chains were broken and I was FREE.  

I cannot express the incredible joy that filled my heart that day and continues to fill it -- even when someone asks me with a concerned look, "Ooh...you having dry skin or something?"  (For someone to mention it with concern tells you how bad it must be when most people probably have some degree of dry skin!)  Prior to February 18, that would have been fuel to drive me to be even more self-conscience.  But no more!  Now, I recall that day when God spoke to my heart that these are my battle scars to show others the power of God's love, hope and redemption.  Like Thomas, after Jesus returns to the disciples after His Resurrection, I have something to show people that HE IS ALIVE, proof if you will.  If I had a perfect healing, where you couldn't see any scars, the miracle would not have as long lasting, powerful and far-reaching effects. 

So the other disciples told him (Thomas), “We have seen the Lord!”

But he said to them, “Unless I see the nail marks in his hands and put my finger where the nails were, and put my hand into his side, I will not believe.”

A week later his disciples were in the house again, and Thomas was with them. Though the doors were locked, Jesus came and stood among them and said, “Peace be with you!”  Then he said to Thomas, “Put your finger here; see my hands. Reach out your hand and put it into my side. Stop doubting and believe.”

Thomas said to him, “My Lord and my God!”

Then Jesus told him, “Because you have seen me, you have believed; blessed are those who have not seen and yet have believed.”

John 20:25-29

 1 Peter 4:16   However, if you suffer as a Christian, do not be ashamed, but praise God that you bear that name.


Even though my scars are not "persecution for being a Christian" what happens is that I do get judged if someone doesn't know me...some even judge whether or not I'm a "good" Christian whatever THAT means, as if I have not had healing or have had problems for some reason of my own doing.   Well, no longer will I be ashamed of the scars I bear...no longer will I be afraid, embarrassed or feeling unworthy of love...I know God loves me and that is all that matters.  I will not hold back His love for others because of my scars (please forgive me for doing so).  So obvious now that the Enemy of our souls has been at work here trying to eliminate my effectiveness to do His will on this earth. 


Some may read of my experiences with God and think that somehow I am something special to be able to experience God, the God of the Bible, in such a way that He speaks to my heart and I can feel His presence and walk in His way.  No!  You need to realize that I am no different than you!  God wants a relationship with you, dear friend, right here and right now.  You don't have to "improve" to be worthy of a relationship with your Creator!  He'll take you right where you are at, scars and all!  Each one of us carries some scars of the battles we have faced...some are hidden on the inside, but the scars are there.  Turn to Jesus and let Him be your healer and He will meet you in just the way you need Him to which might not look like the way He meets me, but meet you He will.


...bless you all for not being ashamed of me...

Here's a photo of Hero, the horse who resides at the Crystal Peaks Ranch in Bend, OR -- a dream of mine would be to take a road or plane trip to Bend and visit Hero in the summer.  I received a lovely note from them inviting me anytime!  Be sure to listen to the radio show Rescued Horses: Renewed Hope

 

Crediting this One to God!

Luke 1:13 "...your prayer has been heard."


In my last post, I was given some ominous news about both legs having a bone infarct and possibly this would be in my hips, knees and shoulder as well.  I did the obligatory MRI last week and the same doctor who had read the X-rays and told me it was osteonecrosis informed me right away that he had been mistaken.  He now said it is clearly a stress fracture and nothing more.  A follow-up X-ray of both hips showed them to be in fine shape, no bone infarcts!

That was quite a Christmas present to receive!  I have a "boot" on the left foot which closely resembles the black Ugg-like boot on my right foot so you almost cannot tell!  Says something about Ugg boots!  I am trying to stay off it as much as possible to allow it to heal since the more I am on it, the more pain there is, especially when walking.  

The fear of never healing has left though and has been replaced by new hope that I can recover, lose weight and who knows, though it would be a miracle, perhaps run again.  With that hope restored, I have begun exercising again with my T-Tapp videos.  I took a "before" photo today which I will not show you until a year from now when I get to take the wonderful "after" photo!  

We had a wonderful Christmas Eve at Community Covenant and then a surprise invite to a friend's house for dinner and fellowship.  Wasn't feeling so great so we left early and I had a stomach episode at home which I kind of felt coming on all day.  Christmas Day was so nice and quiet, together as a family at home.  The kids were way more patient then I would be at their age, waiting for us to get up, make breakfast, eat (an hour later), open one present, delightedly put that Lego set together, open another present, delightedly put that one together while Mike and I took our Christmas Nap on the sheepskin rug with the dog in front of the fire!  They never asked if they could open a present.  I would say, "Ok, I think it's time to open another present."  I think the true meaning of Christmas really stuck this year!

I just realized today that I didn't take a single photo of our Christmas celebration because of feeling physically crummy I guess.  On Christmas night, I made a huge error in judgment.  We went out with friends to our favorite Chinese restaurant, China Pavillion.  First error in judgement was going there on Christmas Day because it was slammed and the staff was completely overwhelmed!  Second lapse was when I decided to try one little bite of a seafood fried rice including one little-mini scallop.  I thought I would challenge my system to see if I truly was allergic to shellfish or if I'd "outgrown" it since it arrived only after my transplant.  I couldn't be more wrong...had a doozy of a stomach incident about four hours later.  I'm done with shellfish.  

Thank you to all of you who have sent wonderful cards, treats and presents this year and even to those who are like me and have had every intention of sending something, but haven't been able to!  Please understand that we are so late in getting these things out because of how bad I've been feeling this month.  I am working on it little by little though!  If I were a company you'd ordered from, you would be a disgruntled customer by now, but thankfully you are family and have a larger capacity for grace.

Have a Happy New Year!

Merry Christmas, Dear Ones!

I am sitting here in my messy house, alone because the kids and Mike went to Carlsbad for 4 days, and battling the ants that are packing their nests up to move inside with the daily drenching we're experiencing with the Pineapple Express.   Instead of getting busy cleaning I am going through the cards and notes I received from you all almost two years ago when I went through my bone marrow transplant.   What a blessing to remember how much I am loved and I'm once again drawing from the encouragement as I face life with disability.


As you might have heard, I was told last week that the excruciating pain which I described as feeling like my ankles are breaking, was not an ankle sprain or fracture, but a "bone infarct" -- you have heard of myocardial infarction?  It's like that but it's in the bone -- the blood supply was cut off in the bone marrow and it died, making the bones very fragile.  It's not usually in that area (ankles or at the bottom of the leg) and is suspected to be in my hips, knees and possibly shoulder.  I have to get an MRI this week and see an orthopedic surgeon, but the news is that I cannot run or jump and that dead bone does not regenerate new bone if it's pretty far gone.  In early stages of osteonecrosis, i.e. dead bone, there would be no symptoms, and they can try to remove plugs from the bone marrow to stimulate new growth.  Ouch.  I was told by my UCLA doctor that this condition is not uncommon in his patients and is usually due to the prednisone which is why they try to get you off of it as quickly as possible.  I only wish I'd known that I should have learned to live with side effects of GVHD that deal with the skin and fatigue rather than the side effects of prednisone which are so much worse!  They never give you the details until you "need to know!"  This doctor also told me to live with the pain as long as possible before getting any joint replacements (hip, knee, etc.) because at my age I'd have to get them replaced in the future since they don't last forever.  I'll also probably be on some kind of medication to prevent more bone loss.


I had to grieve for a few days because it was the first time I had to swallow the reality that I would never run again, never return to my old self, back to the glory days of those 2 years in remission where I experienced the best health of my life.  I remember the feeling of that so well thinking then that it was like a taste of the unhindered life we'll experience in Heaven someday.  I felt completely free and energetic and alive!  Well, that must have been just a wonderful gift from God to enjoy for a season, making me crave Heaven even more because that is what it will be like.  Through the few days I was grieving, I clung to the truth of Philippians 4:6-7 which says:

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."


I knew he'd bring me through it and restore that peace in my heart, and I told myself that even as I cried through the pain.  Sure enough within three to four days I was not only at peace about it, but over the next week the calling on my life to share the hope I have in Christ has been renewed.  He has allowed me to share in the sufferings of Christ and I want it to be used by God to bring others to His glory through it.


Now, I turn back to these wonderful cards, and would like to share some of the encouragement I received...


A friend writes that she prays the power of our God and His name will encourage me:
El Elyon - "The God Most High" He is the Sovereign God
Elohim - "The All-Powerful One, Creator"
El Roi - "The God Who Sees Me" God sees us in all our circumstances
El Shaddai - "The All-Sufficient One"
Jehovah Rapha - "The Lord Who Heals" He heals physically, spiritually and emotionally.
Jehovah Shammah - "The Lord is My Companion"
El Olam - "The Everlasting God"
Jehovah Rohi - "The Lord is My Shepherd" - God takes care of us.
Jehovah - Jireh - "The Lord will Provide"
Jehovah or YHWH - "I Am" - He never changes; His promises never fail


Isaiah 40:28-31 Have you not known? Have you not heard? The everalsting God, the Lord, the Creator of the ends of the earth neither faints nor is weary.  His understanding is unsearchable.  He gives power to the weak, and to those who have no might He increases strength...those who wait on the Lord shall renew their strength; They shall mount up with wings like eagles.  They shall run and not be weary, they shall walk and not faint.


May God answer all the prayers that have been said for you by giving you new strength, health, and all His blessings.

Have a Merry Christmas!