The Gift

In the Christmas season, more than any other, we strive to find the perfect gift for those we love.  We wish we could find that one thing that would bring utter joy and delight, something that would never be forgotten. 

Everyone has his or her own way of shopping.  Some stay in the Christmas mindset all year, finding gifts in April or June that they tuck away until December.  Others are all about finding the best deals.  There are those who actually enjoy the competitive shopping of Black Friday, while others avoid the crowds by sticking to the internet.  Many now utilize wish lists, which fairly guarantees that the “right” gift was purchased.  I still prefer surprises.  But that can be a tall order every time. 

This year, we did manage one surprise that turned out to be truly delightful.  We refinished my daughter’s great grandmother’s piano for her family to enjoy.  Hearing their squeals and seeing the joy in their eyes and Granny’s piano back in service was a gift back to us.  But that was a rare opportunity. 

Not many of the gifts that are given really last or remain etched in our minds.  The movies and games, toys and trinkets, gadgets and gizmos while always appreciated tend to fade with time.  What are the gifts that last, that endure, that can make a difference?  What gifts are bigger than the boxes we wrap them in?

It all starts with what Christmas is all about, the gift of our Savior.  God gave up His eternal companionship with His Son for Him to be born of, live among, and die for mankind. 

John 1:1-5  “In the beginning was the Word, and the Word was with God, and the Word was God. He was with God in the beginning. Through him all things were made; without him nothing was made that has been made.  In him was life, and that life was the light of men.  The light shines in the darkness, but the darkness has not understood it.”

Isaiah 9:6  “For unto us a child is born, unto us a son is given: and the government shall be upon his shoulder: and his name shall be called Wonderful, Counselor, The mighty God, The everlasting Father, The Prince of Peace.”

Philippians 2:4-7  “ Your attitude should be the same as that of Christ Jesus: Who, being in very nature God, did not consider equality with God something to be grasped, but made himself nothing, taking the very nature of a servant, being made in human likeness.”

So what are the gifts that cannot be wrapped in pretty paper and ribbons?  The gift of time.  The gift of kindness.  The gifts of love, laughter, forgiveness, humility, patience, and service.  The gift of a smile, a thoughtful word, a tender touch, a knowing look. 

I’m sure that my husband would have enjoyed something other than spending two days in the kitchen with me, but he chose to devote his time to chopping, measuring, shaping, and dipping Christmas goodies and preparing recipes to share with family and friends because he loves me and wanted to give the gift of time together. 

My daughter would probably prefer to play her new piano without interruption, but she will patiently share her knowledge and love of music with her child so that she can love it too.

My granddaughter probably won’t remember her first ride on a ferris wheel, but she will remember cooking with her Tadee, working in the yard, tickles and hugs in the morning, and prayers, stories, and songs at night. 

The two people who have been tested to see if they are a good match for my transplant have chosen to be available to give the gift of healthy cells, the gift of life, to someone they don’t even know.   (We’ll know more results next week.) 

We can focus on what we get or on what we give.  In reality, the gift of giving is the greatest gift you can give yourself.   In giving comes great rewards.   Spend time with people you love.  Enjoy a child.  Value your elders.  Listen to the stories of both.  Look for the beauty in each day, in each person. 

When the paper and bows are thrown away and the tinsel and trimmings are tucked back in their boxes, the gifts that will be remembered are the gifts of you.

Merry Christmas, and may you enjoy the gifts of one another in the New Year.

A Match? Or Everything You Ever Wanted to Know About HLA Typing but was Afraid to Ask!

I spoke with my MUD (Matched Unrelated Donor) Transplant Coordinator this morning, and she had good news and not so good news.  Because the not so good news was difficult to comprehend, I am going to provide some details to HLA typing that might help those who are wanting to more fully understand what all is going on.

The good news was that the person who went in for their blood test last week was not only a 10 out of 10 match but was even better at 13 out of 14.   Some facilities require 6 of 6, 8 of 8, others 10 of 10.  The more markers that match the better the results.  MD Anderson looks for 10 of 10 or better.   So 13 of 14 is really good.

What are these “markers?”  Human Leukocyte Antigen (HLA) typing is used to match patients and donors for bone marrow or cord blood transplants (also called BMT).  HLA are proteins — or markers — found on most cells in your body.  Your immune system uses these markers to recognize which cells belong in your body and which do not.

Several of you have also asked the difference between a bone marrow transplant and a stem cell transplant.  Basically not much except for how they retrieve the stem cells.  Bone Marrow Transplants (BMT) or Stem Cell Transplants are done to restore the body's ability to produce the different cells that make up the blood.  Bone marrow is the spongy tissue inside large bones.  It contains immature stem cells.   Stem cells mature to become red blood cells that carry oxygen, white blood cells that help fight infection, and platelets that help stop bleeding.  In a bone marrow transplant, the donated stem cells are taken from bone marrow.  In a stem cell transplant, the donated stem cells are taken from circulating blood.  Bone marrow donation is a surgical procedure done in a hospital.  The donor is given anesthesia; then a needle is used to remove marrow from the hip bone (similar to a bone marrow biopsy).  Peripheral blood stem cell donation is done in an outpatient setting.  The donor is given medication over several days to increase the number of stem cells in the bloodstream.  Then a needle is inserted into an arm vein to draw out the blood.  The blood passes through a cell separator machine that removes the stem cells.  The rest of the blood is returned immediately to the donor.   This is the now the more common procedure.

The not so good news is where it starts getting confusing.  When mine was tested, they discovered that I have HLA antibodies in the DP (more on this shortly).  The antibodies are similar to the resistance we develop to Chicken Pox after we’ve had it.  That’s a good thing with Chicken Pox.  But if I have a resistance to a part of my donor’s cell makeup, it could inhibit engrafting.  Engraftment is when the donated cells start to grow and make new blood cells.   A close HLA match reduces the risk of a post-transplant complication called graft-versus-host disease (GVHD).  GVHD occurs when the immune cells from the donated marrow (the graft) attack your body (the host).

There are several groups of HLA markers.  MD Anderson primarily looks at A, B, C, DR, and DQ.  My antibodies are on DP, which most facilities don’t even test.  But because MD Anderson looks for the best match at a detailed level, my antibody situation will be a factor to consider.  If this 22 year old female with 13 of 14 matches ends up being the best match available, then there are extra steps that can be taken at time of transplant to help overcome the antibody issue.  For now, they will continue to search for the best match and keep this one on the back burner. 

For more information on HLA typing, here are a couple helpful sites.

 

http://en.wikipedia.org/wiki/Human_leukocyte_antigen     

http://marrow.org/Patient/Transplant_Process/The_Donor_Selection___Transplant_Process.aspx

The lack of a fully matched donor (8/8 matched, i.e., matched at HLA-A, -B, -C, -DRB1) does not preclude transplantation as a possible treatment option, because transplant outcomes are generally better when patients are transplanted earlier in their disease rather than later.

The NMDP (National Marrow Donor Program) therefore recommends not delaying transplant in the hopes of finding a better matched donor later. The NMDP bases this recommendation on a 2007 study of 3,857 transplants demonstrating that 6/8 patients transplanted in an early disease stage do better than fully matched 8/8 patients transplanted in advanced disease stage. [5] Because disease stage at the time of transplant is the only factor under direct control of a physician, an early referral is perhaps the single most important step that can affect survival. (See the NMDP Clinical Fact Sheet on Outcomes in Unrelated Hematopoietic Cell Transplantation for additional data.)

 (Taken from BeTheMatch.org.) 

With that in mind, I am going back to my local oncologist tomorrow, and then we will meet with my transplant doctor on January 2.  The MUD Coordinator will keep the transplant doctor and the head of the CLL department in the loop with regard to possible donors.  The doctors at MD Anderson were very pleased with our proactive approach.  While it is scary to say the least, the potential for long-term survival is greater with this plan. 

I think that this past month of increased fatigue has helped me begin to accept what the next year or so is going to be like.  I am learning my limits, and while I still push them often, I now know how far is far enough.  As I wrote on an earlier post, we continue to prepare.  It doesn’t feel like much sometimes, but it is all I can do right now.  Prepare and pray.  Pray for the right donor.  Pray for the right timing for the transplant.  Pray that the right pre-transplant treatment is chosen.  Pray that my body accepts the transplant.  Pray for no infections.  Pray for Paul and my mother as they provide care for me before, during, and after.  Pray for continued positive attitude.  Pray for peace.

“And the peace of God, which surpasses all understanding,

will guard your hearts and your minds in Christ Jesus.”  

Philippians 4:7

The Weight of the World…and a Possible Donor

How do you carry the weight of the world when extra pounds keep piling on?  As a cancer patient, the fear of the unknown is a daily battle.  As a cancer patient with uncommon components, the unknown is a bit greater.  It is easy to read and quote the Scriptures that talk about laying down our worries and letting our Savior carry us through, but it can be more difficult to actually do it on a moment-by-moment basis. 

As a mother, I worry (no, let’s say that I am mindful, prayerful, and thoughtfully concerned) about each of our children…their relationships, their jobs, their finances, their families, their health.  I am concerned and prayerful for my grandchildren, especially Dana with her failed hearing tests.  As a wife, whatever troubles my husband troubles me…whether it’s his back, his job, or his commitment to make everything right for me.  As a daughter, sister, cousin, aunt, niece, and friend, I pray and follow the medical, emotional, relational, financial, and overall needs of those I love.  There are those dealing with everything from the trivial to the traumatic, from simple to life threatening.  They all matter. 

How do we compartmentalize all that is in our hearts and minds?  How do we carry the load?  How do we lay it down?

In my thoughts this morning, I admitted that I am worried about finding a donor.   And I’m worried about what will actually happen when they do!  It’s scary to consider the reality of going through the transplant process and embracing the variety of possible outcomes.  The last conversation with my Transplant Coordinator revealed that she had sent four requests but no one had yet responded.  Today, she told me that one went in for his/her blood test yesterday and we should have the results by next week.  She said that it looks positive so far, and that once we have a confirmed donor it could take as little as four weeks to move forward with the transplant.  Wow!

It's hard to stay focused when I'm tired.  It’s hard to push myself when I don’t know what tomorrow holds.  Of course, I don’t suppose any of us know what tomorrow holds!  We just take one day at a time, thankful for His daily provision of grace.  I stand with you in prayer for the spoken as well as the unspoken requests on your heart.  Thank you for standing with us as well.

"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light."  Matthew 11:28-30

"Behold, God is my salvation; I will trust, and not be afraid: for the LORD JEHOVAH is my strength and my song; He also is become my salvation."  Isaiah 12:2

"An anxious heart weighs a man down, but a kind word cheers him up."  Proverbs 12:25

“Cast your burden upon the LORD and He will sustain you; He will never allow the righteous to be shaken.”  Psalm 55:22

"So do not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own."  Matthew 6:34

"God is our refuge and strength, an ever-present help in trouble."  Psalm 46:1

“Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.”  Philippians 4:6

“Indeed, the very hairs of your head are all numbered.  Do not fear; you are more valuable than many sparrows.”  Luke 12:7

“And my God will supply all your needs according to His riches in glory in Christ Jesus.”  

Philippians 4:19

A Shot of Rum

When I was 17, I smoked one, actually only a portion of one, cigarette.  I was mad at my parents about trying to enforce some sort of restriction (parents do that) when I wanted freedom (teenagers want that).  I felt the relaxation from that one indulgence permeate my entire body.  I knew right then that I would never smoke another because that’s why people get addicted to those things!  I also realized that eventually it would take more than just a portion of one cigarette to accomplish the same feeling.  So that was the end of smoking.

Tonight, I had a similar experience with a shot of rum.  I have been so excited to have Paul home taking vacation time this week.  But each day I have had increasing discomfort.  As I am apt to do, I wanted to make the most of each moment…work on projects together, decorate for Christmas together, get our gifts selected and wrapped together, have lovely meals together, and just spend that precious commodity of time…together.  And we have, some.  But mostly, I just don’t feel very well.  I don’t want to take my nap when he’s home.  What was it that I used to say?  “You can sleep when you’re dead!”  Doesn’t seem quite so appropriate anymore.

Anyway (my brother will cringe because I used that segue, but that’s a whole other story), back to the rum.  I have been taking two Motrin PM every night just so I can sleep.  It’s been working fairly well.  But the more tired I get during the day, the worse my nights are.  It sort of feels like what I imagine “restless leg syndrome” must feel like, except all over.  I lay there trying to coax myself into rest to no avail.  Then I feel guilty about feeling bad because I imagine that my mom’s RA, my cousin’s peripheral neuropathy, not to mention my dear husband's back pain, probably feel quite similar.  I, however, can eventually get a bone marrow transplant and feel better…after a while.  They can’t.  Of course, I guess most folks don’t die from RA either.  But I digress.

Back to the rum.  I finally just could not stand it anymore and got up to find something, anything that might help me relax and get some sleep.  So I open the cupboard and pour a shot of rum, warm it up a bit, and sip it down.  I could feel its warmth permeate my entire body.  Then I realized, just like when I was 17, that this is why folks get addicted to this stuff too!  Ugh! 

So what is one to do?  The Transplant Coordinator continues her search for a donor.  And I wait.  I want to wait with dignity, with a smile, with laughter in my voice, with confident hope in my heart.  I want to enjoy every moment with my family and friends.  I have packed and planned tons of fun into this last month of the year not certain what the next will bring.  But it’s difficult to fully embrace each moment when I just don’t have the energy because of the nagging drain of the ache. 

So my prayer request is simple.  Please pray that I can rest without rum, that I can enjoy as many moments as possible, that I will be patient, and that I will be a good girl and take my nap.

Preparing For What You Cannot Plan

That was the title of Sunday’s message.  You know when you hear a sermon and are convinced that God meant it just for you?  I’m sure that Pastor Dean Wood, of Creekside Church, had other things in mind when he prepared this message than what it would mean to this cancer patient.  But God works that way, you know.

In the first two chapters of the book of Ezra, the Israelites are in captivity in a foreign land.  Despite their situation, Ezra maintains appropriate counts and records for the many areas of service.  There is a list of gatekeepers, even though there are no gates…or even walls!  He listed the choir members though there was no place to sing.  He maintained the count of temple servants even though their temple lay in ruins back in their homeland.  Ezra made sure that no matter the circumstances, Israel was prepared and ready when God’s plan took them home.

In the book of Acts, Jesus asked the apostles to not leave Jerusalem but to wait for the baptism of the Holy Spirit.  They didn’t know the when or the how, but their Christ asked them to be ready.  Peter could have never planned that 3,000 people would be saved on the day of Pentacost, but he could be prepared.  That is what Christ asks of us.  Be prepared.  Be ready.

In the last couple months, Paul and I have read and researched in order to be prepared to partner with my doctors in determining the best course of treatment.  Yesterday, we had that opportunity but with somewhat frustrating results.  First, we learned that my brother was not a match…only a half match, which makes for a very risky transplant.  Second, we learned that all their previous “younger” CLL patients with 17p deletion declined the transplant after first remission because they had felt better.  My doctors were elated to hear that we had studied enough to know that was a foolish choice.  Third, we all decided against the Ofatumumab trial because it is not a CLL treatment, rather it is a monochlonal antibody biological therapy designed to postpone treatment by limiting disease progression, to buy older folks or people too scared to move forward with the transplant more time.  That’s not our goal.  Next we were reminded that I am not “2.5 kids and a dog!”  That is to say that my situation is not common and there is no standard protocol. 

So what does this all mean?  We continue to wait.  We wait until the MUD Coordinator (Matched Unrelated Donor) finds a match and goes through the procedure of confirming that person’s willingness and availability to donate.  At that point, we would move forward with either FCR or Campath for the front line treatment and then directly to the transplant. 

And we continue to prepare.  Prepare physically by getting the necessary rest, avoiding germs and illness, strengthening my body through nutrition, exercise, etc.  Prepare mentally by staying educated and informed.  Prepare emotionally by understanding and accepting that taking a year or more out of my life can hopefully buy back the next twenty plus years.  Prepare spiritually by staying close to my Lord, in His Word, and on my knees.  Prepare financially by wise stewardship of what He has provided and continuing to work as much as possible within my limitations.  Prepare socially by enjoying my family and friends and spending as much time together as possible before that element becomes restricted. 

We don’t always know the plan.  But we can be prepared.

Jeremiah 29:11  “For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.” 

Lord prepare me to be a sanctuary
Pure and Holy, Tried and True 
And With Thanks Giving
I'll be a living 
Sanctuary, Lord for you

“The Jerk”

How many of you have seen Steve Martin’s memorable, hysterical, most quotable comedy, “The Jerk?”  OK, you may be wondering why this of all things has jumped into my head as something to share in my blog.  Well, remember when Steve Martin’s character, Navin R. Johnson, first sees his name in the phone book?

 

Navin R. Johnson:  “The new phone book's here!  The new phone book's here! 
Page 73 - Johnson, Navin R.!  I'm somebody now!  Millions of people look at this book everyday!  This is the kind of spontaneous publicity - your name in print - that makes people.  I'm in print!  Things are going to start happening to me now.”

 

Well, MD Anderson has something just about as cool.  MyMDAnderson.org.  I just log in with my patient ID number and password and there before me is everything I need to know about me and my treatment at MD Anderson.  It has all my personal information, blood type, test results, my team of doctors and nurses, support personnel and information, educational material, and my appointment schedule…complete with directions, including floor and elevator bay!  I AM somebody now…at least at MD Anderson!  :) 

This was very helpful today because when I logged in this morning I saw that the good doctor had already contacted the folks at MD Anderson about the possibility of scheduling a CT Scan.  (I learned that CAT scan and CT scan are one in the same.)  However, my two teams (transplant and CLL) BOTH ordered the same tests, so I had them scheduled for this Friday and for next Tuesday.  A couple phone calls and an email to my patient advocate got everything worked out.  I also learned that the reason we haven’t gotten the results back on my and Ron’s HLA typing was because my insurance company has not communicated back with the business center at MD Anderson to give approval.  So if anyone would like a specific prayer request, please pray that the insurance company would move forward in a timely manner and contact MDA with its approval. 

Now again, it may seem unusual to find correlation between “The Jerk” and my current situation, but I have always heard that laughter is the best medicine.  So I need to find humor where I can. 

Navin R. Johnson:  “I don't need anything. Except this ashtray.  Just this ashtray...and this paddle game.  The ashtray and the paddle game and that's all I need.  And this remote control.  The ashtray, the paddle game, and the remote control, and that's all I need.  And these matches.  The ashtray, and these matches, and the remote control, and the paddle ball...and this lamp.  The ashtray, this paddle game, and the remote control, and the lamp, and that's all I need.  I don't need one other thing, not one... I need this.  The paddle game, and the chair, and the remote control, and the matches for sure.  And this. That's all I need.  The ashtray, the remote control, the paddle game, and this magazine, and the chair.  And I don't need one other thing, except my dog.”

I’ve got all I need too.  I have the love and support of my sweet husband, my kids, family, and friends.  I have the knowledge that God is in control and loves me too.  And I have confidence in a great team of doctors. 

I am somebody.  And I’ve got all I need.

Rollercoaster Rides

After a weekend of purposefully trying not to worry, we head back to the good doctor’s office this morning expecting a look of concern and the needle biopsy.  Mondays must be the main chemo day because the same sweet folks with little hats and good attitudes were there again.  Or rather, I was back on their day. 

It’s a longer wait on Monday mornings, but I read an excellent article about Texas A&M and t.u. and the coming change in the one hundred plus year rival tradition.  Finally, it was my turn for my regular finger prick, vitals check, and to see the good doctor.  He came in as positive as always, copies of reports in hand, and explained the results from Friday’s ultrasound.  Yes, the lymph gland is enlarged.  We expected that.  Yes, there are some additional abnormal nodes, but this is also not unusual for the disease.  No, there is no need to do a needle biopsy.  We already know that you have cancer!  We’re not going to order unnecessary tests, risk unnecessary exposure, and spend unnecessary money.  Radiologists tend to be…a bit over zealous.  Tests are what they do.  And in as short a time as we were alarmed, we were granted the gift of relaxing just a bit.  How many more twists and turns is this CLL rollercoaster going to have?  Quite a few, I suppose.

The rest of the visit was spent discussing the various front line treatment options, a couple clinical trials, and what we all thought (with our vast two months of knowledge) would be the best option.  Remarkably, we all agree.  But as was originally planned, we will wait for Dr. O’Brien, the MD Anderson expert, to make the final call.  Our good doctor has already had me pre-screened for the trials and is going to give the PA a heads up about my lymph nodes and ask about a CAT scan.  No need to do one now when MD Anderson would just do it again.

So we will stand in line until next Monday when we board our rollercoaster car, buckle up, and head upwards with the sound of gears beneath us, and look forward to the exhilarating ride before us.  Think I’ll take a Dramamine.  :)

Sunsets and the Great Unknown

On the last leg of our latest trip to Oletha, my mind wandered back to the events of the week.  But the details faded into the background as I took in the scene before me.  The sun had just dipped below the horizon, burning the sky with a deep red-orange glow fading upward to dusky twilight blue with the slightest sliver fingernail moon already low in the western sky.  Is there anything other than this moment?

The good doctor has reminded me at the end of each visit to call the office if anything ever changed.  Fever, chills, swollen lymph glands….  Nothing had…until last Wednesday evening. 

I was still tired from the Light the Night walk so Mother and Mac had come to our house for dinner and cards.  I made the best slow-cooker roast ever, and Mac and I had walked away with that week’s card game.  As I was getting ready for bed, I noticed swollen, painful lymph glands under my left arm.  It seemed unusual for it to have appeared so suddenly.  Just six days prior, the good doctor had checked my glands and found nothing unusual.  We crawled into bed a bit concerned.

The next morning, I phoned the doctor’s office to inform them of the change.  After speaking with the good doctor, his nurse scheduled an ultrasound for Friday and a follow-up appointment for the next Monday morning.  I planned on going to the ultrasound on my own.  Paul has already missed work for the other appointments and I didn’t think this would be a big deal.  But my sweetheart was home by noon to get me to my 1 o’clock appointment.  How does he always know when I’m going to need him?

Sometimes the staff allows Paul back for my tests.  Other times they don’t.  This was one of those times.  I prepared for the simple test but could quickly tell that the ultrasound technician saw more than she expected.  She asked me to wait while she went to consult with the radiologist.  This was not normal procedure.  She came back in and asked me to get dressed and go wait with my husband.  The doctor came out shortly and visited with us about what he saw.  We didn’t really understand much except that the lymph node was about 2.5 cm and that there were some other “abnormal” nodes.  He had a call placed to my doctor and was suggesting a needle biopsy. 

We were more than a little shaken.  Swollen lymph glands were an expected progression.  But when a doctor uses the words “abnormal” and “needle biopsy” on someone who already has cancer, it can be quite disconcerting.  So we headed around the corner to the good doctor’s office and spoke with the nurse to let her know of the latest development so she could expedite the information.  “I’d like to tell you to have a good weekend, but I know you probably won’t.  Try not to worry.  We’ll see you Monday and get the biopsy ordered.”

So we continued with our plans, picked up a few groceries, the youngest from school, and headed north.  How many more times will we get to do this before the treatments start?  Will I be able or allowed to make this trip once it does?

After we unpack and join our friends on the deck to share thoughts and a glass of wine, I watch as the burnt orange fades to ink blue, dotted with thousands of stars.  The cool, clear night releases what the summer’s heat hides.

The wine and the World Series both come to an end, and we call it another day.  I love it here.  But honestly, I love wherever we are.  I pray that Monday brings answers.  Answers that bring countless more sunsets, ball games, and glasses of wine shared with the ones I love.

Walk This Way

Last night was the Texas Gulf Coast Chapter’s LLS Light the Night Walk in Market Street in The Woodlands.  Hundreds, thousands joined together to walk in support or in memory of those whose lives have been touched by leukemia or lymphoma and to raise the much needed research funds and awareness.  A record breaking $1 million+ was raised between the two Houston-area walks.

Along the designated route were volunteers who waved directional signs stating “Walk This Way.”  I couldn’t help but sing Aerosmith’s famous anthem of the same name.  Alongside me were family and friends who came to walk, to support, to encourage.  For all, it was a sacrifice of time.  For others, it was shear determination.  The women in my family all seem to have one autoimmune disorder or another.  It was another trait besides being “tough as nails” that was passed down from our grandmother.  Gaydene has lupas.  Autumn has peripheral neuropathy and in the last two months has undergone two surgeries for arterial splints in both her legs.  They both walked.  Thank you Gary, James Ray, and Amanda for walking alongside your wife and mother…and me.

That was the longest 1½-2 miles!  But the CLL journey has only begun.  As we passed the “Walk This Way” signs, I thought about what God has said about walking. 

Psalms 119:105  “Your word is a lamp to my feet and a light for my path.”

Psalm 56:13  “For you have delivered me from death and my feet from stumbling, that I may walk before God in the light of life.” 

Isaiah 41:10  “Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.”
2 Corinthians 5:7  "For we walk by faith, not by sight."
Ephesians 5:2  "And walk in love, as Christ loved us and gave himself up for us, a fragrant offering and sacrifice to God."
Micah 6:8  "He has told you, O man, what is good; and what does the Lord require of you but to do justice, and to love kindness, and to walk humbly with your God?"

We all crossed the finish line…some sooner than others…but we all crossed. 

Hebrews 12:1  “Therefore, since we have so great a cloud of witnesses surrounding us, let us also lay aside every encumbrance and the sin which so easily entangles us, and let us run with endurance the race that is set before us.”

2 Timothy 4:7  “I have fought the good fight, I have finished the race, I have kept the faith.”

Ecclesiastes 9:11  “I have seen something else under the sun: The race is not to the swift or the battle to the strong, nor does food come to the wise or wealth to the brilliant or favor to the learned; but time and chance happen to them all.”

By the end of the evening, actually before it even began, I was tired.  As we waited for the elevator in the parking garage, my Bethany, my little girl, piggy-backed her mama.  How many times in years past did I carry my children when they were tired?  How often has our Lord carried us when we thought we couldn’t take another step?

Matthew 11:28-30  “Come to me all of you who are weary and burdened, and I will give you rest.  Take my yoke upon you and learn from me for I am gentle and humble in heart, and you will find rest for your souls.  For my yoke is easy and my burden is light.”

In two more weeks, we travel back to MD Anderson for another round of tests, to find out if my brother is an HLA match, to meet with the transplant doctor and with the head of the CLL department to determine the best front-line therapy, to consider a clinical trial, to decide what path to take.  

To those who have walked this walk before, to those who walked with me last night, to those who donated, to those who stand with me, to those who write and send notes, posts, and cards, to those who have offered in the weeks and months ahead to drive, sit, cook and clean, to those who offer words of encouragement, to those who listen, to those who pray…thank you. 

1 Corinthians 12:4-6; 27  “There are different kinds of gifts, but the same Spirit distributes them.  There are different kinds of service, but the same Lord.  There are different kinds of working, but in all of them and in everyone it is the same God at work.”  “Now you are the body of Christ, and each one of you is a part of it.”

Thy Word is a lamp unto my feet and a light unto my path.

When I feel afraid, think I've lost my way,

still you're there right beside me.

And nothing will I fear, as long as you are near.

Please be near me to the end.

I will not forget your love for me and yet

my heart forever is wandering.

Jesus be my guide, and hold me to your side,

I will love you to the end.

Nothing will I fear as long as you are near.

Please be near me to the end.

Thy Word is a lamp unto my feet and a light unto my path.

Thy Word is a lamp unto my feet and a light unto my path,

and a light unto my path.

You're the light unto my path.

I plan on walking in next year's walk and in many after that.  Here's to the journey.  Walk this way.

Making a Difference

When faced with your own mortality, the question arises of whether or not you have made a difference in life.  Not that I have any intention of not making it through this new phase, but the diagnosis itself gives way to introspection. 

As a parent, each choice, each decision, everything done both consciously and subconsciously shapes the future one child at a time.  I had two.

As a youth group leader, I was given the incredible gift of hundreds of teenagers over nearly two decades to love and guide, to laugh with, to challenge and be challenged, to embrace, to point the way.  I have more memories than I could ever write down.  They impacted my life much more than I imagine I ever did theirs.  But maybe, in some small way, God allowed me to make a difference.

As a Type A personality, we want to make a difference in our work as well.  It’s not enough to just do your 8 to 5 and call it a day.  I have had a few opportunities over the years that I will always value.  As a trainer, it was not just teaching guys how to sell cars.  It was a way to teach life skills…communication, understanding people and their needs, learning to listen, demonstrating the work ethic I learned from my dad, working with integrity.   The five-point walk around was just a bonus!  While at the Chamber, I had the distinct privilege of being part of a team that made great strides in that community.   It’s difficult to have had that and then move on.  Perhaps that too was a season.  A part of my journey.

It seems there comes a time in life when we receive more than we give.  It’s so much more fun to give, but I am learning that there is grace in receiving.  As I look back over the years, I am struck by the magnitude of “what if’s.”  But none of us can go back, right any wrongs, hit replay and see if the story turns out differently.  We each have this one moment.  Some of us have had thousands upon thousands of moments.  Some we chose well.  Others we didn’t.  So what do we choose in this moment?  Will we choose to love or to hate?  To forgive or to resent?  To appreciate or to criticize?  To move forward or to live in the past?  To embrace each day or to live in fear?  “For God has not given us the spirit of fear; but of power, and of love, and of a sound mind.”  2 Timothy 1:7

Some people will make history.  Others will only be remembered by the ones who loved them…and that but for a brief time.  God has given us the opportunity, the responsibility, to show Him and to share Him in our “Jerusalem, Judea and Samaria, and to the ends of the earth.”  I didn’t get to be a missionary, but I got to love teenagers who did.  As a parent, I made mistakes.  But there are now three young lives that could change tomorrow.  Jobs come and go, but the impact we have on people remains a part of their fabric. 

Make Me a Blessing

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Out in the highways and byways of life,
many are weary and sad;
Carry the sunshine where darkness is rife
making the sorrowing glad.

Make me a blessing,
Make me a blessing,
Out of my life
May Jesus shine;
Make me a blessing, O savior, I pray,
Make me a blessing to someone today.

Tell the sweet story of Christ and His love;
Tell of His pow'r to forgive;
Others will trust Him if only you prove
true ev'ry moment you live.

Give as 'twas given to you in your need;
Love as the Master loved you;
Be to the helpless a helper indeed;
Unto your mission be true.

Make me a blessing,
Make me a blessing,
Out of my life
May Jesus shine;
Make me a blessing, O savior,
I pray Thee, my Savior,
Make me a blessing to someone today.

The Hope Box

Today I went to my cousin’s house to explore the Hope Box.  Bonnie is a breast cancer survivor, and the Hope Box is filled with wigs, scarves, and hats not only from her bout with cancer but also from three others after her.  I will be the fifth one to share in the Hope Box.

We played dress up with all the wigs and various head coverings.  It was confirmed that I am definitely a brunette.  Just cannot do the blonde thing.  :)  There were two wigs that looked good, one that looked great!  And the scarves and hats were really cute.  It’s amazing how something so relatively simple can lift your spirits, just knowing that you won’t have to look so vastly different…at least when in costume. 

After a lovely lunch, we went to the Women’s Health Boutique who sells a variety of necessities for ladies with cancer.  The one thing that had not made the Box round trip was the comfy sleeping cap.   When you don’t have hair, there’s nothing to keep heat from escaping.  So I got a couple to add to the Box.

I love that it’s called the Hope Box!  How appropriate.  Not only is it encouraging to know that there are things in place that can ease the temporary cosmetic changes, it is also encouraging to know that everyone who has worn these coverings are still around to share not only the Box but also their support.

Hope has many different faces.  It can be a box of head coverings, a card from a dear friend, a Facebook post, a phone call, a prayer.  Sometimes it’s a lingering hug, a gentle touch, a knowing look. 

Hope means different things to different people.  There are several ways to define hope.  “To wish for something with expectation of its fulfillment.”  “To have confidence; trust.”  “To look forward with confidence.”  “To have a wish for.”  “A reasonable ground for this feeling.”  “A person or thing that gives cause for hope.”  “To trust, expect, or believe.” 

Sometimes we say “I hope things get better” and we don’t necessarily believe it.  Other times, our thoughts may be better reflected as “My hope is grounded in what I believe.” 

God’s Word speaks often of hope. 

Hebrews 11:1  “Now faith is the assurance of things hoped for, the conviction of things not seen.”

Psalm 21:34  “Be strong and take heart, all you who hope in the LORD.”

Psalm 43:5  “Why are you downcast, O my soul?  Why so disturbed within me?  Put your hope in God, for I will yet praise him, my Savior and my God. “

Romans 12:12  “Be joyful in hope, patient in affliction, faithful in prayer. “

Thank you, Bonnie, for sharing Hope with me today.  It was more than just what was in the Box.

My hope is built on nothing less

Than Jesus’ blood and righteousness.

I dare not trust the sweetest frame,

But wholly trust in Jesus’ Name.

On Christ the solid Rock I stand,

All other ground is sinking sand;

All other ground is sinking sand.

When darkness seems to hide His face,

I rest on His unchanging grace.

In every high and stormy gale,

My anchor holds within the veil.

His oath, His covenant, His blood,

Support me in the whelming flood.

When all around my soul gives way,

He then is all my Hope and Stay.

When He shall come with trumpet sound,

Oh may I then in Him be found.

Dressed in His righteousness alone,

Faultless to stand before the throne.

On Christ the solid Rock I stand,

All other ground is sinking sand;

All other ground is sinking sand.

October 10

Twenty-nine years ago today, I went to the hospital to give birth to my firstborn.  A son.  Joshua Bryan Darwin.  It was 2:07am on that Sunday morning when I first heard his cry, saw his face, held him close.  That was a day to celebrate a new life.

Today, October 10, 2011, I went to another hospital for another reason.  It was my initial visit to MD Anderson, THE world-renowned cancer center.   This day was about new life as well.

Weighing in at 7 lbs. 8 oz. was fairly common back then when 9-10 lb babies were considered big.  Now that I’ve had two grandsons who weighed in at 11 lbs. 2 oz. at birth, I’d say that babies seem to be getting bigger.

Today was a full day.  New patient registration, lab work (16 vials of blood!), first meeting with Dr. Shah (transplant doctor), transplant coordinator visit, meeting with business services, patient/family orientation, and ending with an echocardiogram.  Tomorrow we go back for the pulmonary function test, intro to transplant class, a visit to The Learning Center, and my second bone marrow biopsy…with less Lidocaine than before.

We were all about natural childbirth and succeeded to see Joshua into the world without any medication.  We were home within hours and started our lives as parents without any written instructions.  Babies come that way, you know.   You just pray everyday, find trusted mentors who have raised good kids, and follow a combination of your heart, your own good sense, and the wisdom of those who have gone before.

At MD Anderson, as well as through our own research, we have gotten tons of written information about protocol, procedures, insurance, and recommended courses of action.  We were given phone numbers and websites where we can contact mentors who have walked the walk before us and are willing to now walk the walk along side of us.  We have the wisdom and experience of doctors who have researched and spent their lives understanding and treating cancer.  But they’re not yet quite sure what to do with me.

Joshua was an unusually good child.  He loved books.  He spent hours building with Tinkertoys and Legos.  His blanket/cape made him Superman.  And he was a budding artist by the time he was three.  He didn’t get into much trouble.  All I had to do was raise an eyebrow to reign in any questionable behavior.   But even with an easy tempered child, there is so much responsibility as a parent to always be teaching and guiding them in the ways they should go.

The path for a healthy 50 year old with CLL and 17p deletion is neither clear nor common.  The few things that we learned for sure today were, first, they are only going to test my brother as a bone marrow match.  If he is not a match, then they will proceed to the national registry.  All who have so kindly volunteered to be tested can contribute to the cause by registering at www.bethematch.org.   Second, we learned that because of insurance regulations, I would first go through chemo to see if it results in remission.  If it doesn’t, which is likely because of the 17p, I will be eligible for the transplant.  Or if the chemo works for a while and then doesn’t any more (which is called refractory), I would also be eligible.  This is the current “protocol.”  We are going to meet with the head CLL doctor to see if there is any new protocol for people in my situation and age group.

Raising a child is a new experience everyday.  They learn new sights, sounds, actions, and words.  They grow from completely dependent little creatures to increasingly independent adults.   What a reward to see your son grow into a man.

We have concluded one thing in our CLL journey so far.  Every day is new.  We never quite know what to expect.  Some days we just have to be patient.  Some days are encouraging.  Other days are not.  We don’t know what this is going to look like as it grows.  But we know that we are responsible for each day’s decisions.  So we pray, we follow our hearts, our own good sense, and surround ourselves with the wisdom of those who have gone before.

Happy Birthday, Joshua.  I plan on being here for a whole lot more.

I love you!