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

---

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!

The way I’m wired….

When I was three years old, my parents started me in dance class.  Not that I was naturally talented.  I think it was because I was a bit of a klutz and they hoped I’d learn some grace.  It helped.  I still walk as I was taught in class.  By the time I was five, I had begun piano lessons.  We were a fairly musical family, and my dad really wanted me to excel.  By year eight, my folks thought that dance, piano, school and the responsibilities that go with each would be too much for me.  Sadly, dance went by the wayside just before I got my toe shoes.  Little did they know…I thrive on busy!

As a teen, I was an honor student, held down an office job, was in choir, multiple clubs, and school musicals, staffed at camp, was involved with a youth group at a sister church across town, and had a boyfriend. 

As a mom, I worked from home, kept a home, raised kids, kept kids, ran a junior high group, worked outside the home, juggling family, friends, church, work, and all the other things that moms do.

As an empty nester, the busy continued.  It’s what I knew.  Maybe it’s what I needed.

I’ve always been busy.  I like busy.  I do busy.  I get more accomplished when I’m busy.   I could go like crazy for weeks on end, take one day to catch up on sleep, and then be back at it.  It’s just the way I’m wired.

Not so much anymore.  Now I need a nap.  In my head are all the things that I want or need to do.  I make my lists.  I set my goals.  I have my accountability partner.  Some days, I manage to get through my list fairly well.  Other days, not so much.  I struggle with this.  It’s not who I am.  It’s not what I do.  But this tired is a different kind of tired.   Not an “I’ve been busy” tired.  Just a “Why am I so tired?” tired. 

I need to embrace this and realize that it’s only for a season.  I just don’t know how long this season will last.  I have always felt somewhat “in control.”  Silly girl.  You were not in control.  You were just busy.  God has regularly used some sort of weird health issue to get my attention, to slow me down.  Thinking about it now, it goes back a lot further than I’ve thought.  Bad concussion around 3 or 4.  (I was running on slippery pavement.)  Chicken Pox at 13, just before my parents’ 25^th wedding anniversary.  “Why didn’t someone tell me about the party?”  Spinal meningitis as a senior.  “But rehearsals start next week.”  Toxic Shock at 19, two weeks married.  (No arguments there.  I was down for the count.)  Staph infection and surgery at 41.  “How long will this take?  I have a plane to catch.”  Weight loss and stomach disorders throughout my 40’s.  “Are you under an inordinate amount of stress?”  Bells Palsy at 45.  (Highest month in sales, even though I sounded and looked like Bill Murray in Caddy Shack.)  Hysterectomy at 46.  (Started new job 2 weeks later.)  Shingles then CLL at 50.  What is it, Lord?  Can’t I just get a cold or allergies like everyone else?  Slow down, Tamara.  Maybe I don’t thrive on busy….

So I guess I’ll slow down.  I will take my nap.  I will embrace this season.  I will think and pray and read.  I will listen.  I will be quiet.  Well, I will be quiet-er.  :)

“For everything there is a season, and a time for every purpose under heaven.”  Ecclesiastes 3:1

"One Day You Will"

http://www.youtube.com/watch?v=ZO4zSTqvf9M&feature=share

I'm Gonna Love You Through It"

http://www.youtube.com/watch?v=WxIt70j_SPk&feature=share

It’s all in the details….

Many of you have asked for more information as to what exactly the “17p deletion” is and what it means.  Others have asked for details about the bone marrow transplant.  I am going to include both here.  Please forgive the lengthiness and the sterile dialogue.

17p Deletion

To put it as simply as possible, and to quote my oncologist, 17p deletion involves a molecular change in chromosome p53 which creates resistance to chemo.  “Preliminary data indicate that the presence of chromosome 17p deletion (17p-) by fluorescent in-situ hybridization (FISH) in chronic lymphocytic leukemia (CLL) may be uniquely associated with resistance to standard therapy and dismal survival.”   

Bucket A CLL patients can “watch and wait.”  Bucket B patients can be “managed.” But…

“For the last third of patients with the most aggressive form of CLL and all the bad prognostic indicators, accurate diagnosis and risk classification are even more important. These folks are in high risk “Bucket C”. They don't have the luxury of a lot of time to waste.  Dithering is not an option for them.  For this unfortunate subset of CLL patients, making the right first therapy choices is essential.  Under-treating an aggressive form of CLL, waiting too long or wasting time with ineffective and tentative therapies spells trouble of the worst sort.

If you are a younger patient with high risk profile, the game plan becomes a lot more critical. Unlike more elderly patients with a middle of the road prognosis, you are not going to be able to “run out the clock”.  A five to ten year survival prognosis is not good enough, you face too much of a penalty in reduced life span.  Even our best chemotherapy regimens are not going to hold the line for what would otherwise be your normal life span.  I am extremely happy to report that modern advances in stem cell transplants now give us options we did not have just a few years ago. Emerging consensus is that young patients with high risk CLL should be looking at stem cell transplants sooner rather than later.

Think of stem cell transplants as getting rid of your cancerous, no-good-bum of an immune system and replacing it with a healthy immune system from a compatible and willing donor. It helps if you have a well-matched sibling donor, since it saves the hassle of finding a matched unrelated donor, a task that becomes next to impossible for ethnic minorities.  Stem cell transplants are coming up the curve awfully fast.  Survival statistics are improving each year.  But making the decision to go the transplant route is still a tough call and you really need to get your ducks in a row before you can make it.”

There are basically two schools of thought in treatment.  One, wait until I’m more symptomatic before treating.  Or, two, treat now while I’m still young and healthy (yes, my doctor said that 50 is young!) and have a better shot of handling the treatment and transplant.  This is the decision that the MD Anderson specialists and my oncologist will be discussing over the next week or two after they get the results back from all my upcoming tests.

Allogeneic Stem Cell Transplant (via MDA Patient Education)

This section is for patients who may be receiving stem cells from a donor’s peripheral blood or bone marrow. 

General Information

Stem cells are found in a person’s:

· blood,

· bone marrow (spongy tissue found inside the large bones of the body) and a

· newborn baby’s umbilical cord.

During an allogeneic transplant, physicians collect stem cells from a donor and infuse them into a patient.  A special blood test called HLA (human leukocyte antigen) typing checks if a patient and a donor are a match. The donor may be: 

· an identical twin (a syngeneic transplant), 

· a relative, 

· someone who is not a relative (matched unrelated donor, or MUD transplant), or

· a newborn baby (umbilical cord blood transplant)

Before the transplant, the patient receives high doses of chemotherapy and/or radiation to destroy the disease; however, this also damages other parts of the body, including the bone marrow and immune system.  (The immune system is the body’s defense against disease and infection.) Also, the body is not able to make healthy blood cells.  The transplant repairs these effects and creates an environment to accept the donor’s stem cells. 

Graft-Versus-Leukemia Effect

Graft-versus-leukemia or graft-versus-disease effect (GVL/GVD) is a major benefit of an allogeneic transplant. It occurs when the donor’s cells destroy the patient’s cancer cells because it “sees” them as “foreign” and different.

HLA Typing

If you are being considered for an allogeneic transplant, you will need HLA typing.  Antigens are proteins found in white blood cells that make each person’s tissue type unique. HLA typing is a special blood test that finds these antigens and then compares them to the donor’s. Both the patient and all eligible family members should be HLA typed to find a suitable donor.

Finding an HLA-Matched Donor

It is important to find the most highly matched donor available. If the donor and patient are HLA-matched, there is less risk of complications.   The best donor for an allogeneic transplant is an HLA-matched sibling. This is because parents pass on one-half of their HLA typing to their children. Therefore, each brother or sister has a 25 percent chance of being a match with the patient. There is about a 1 percent chance of being matched with a parent, child or distant relative.

Collection of Peripheral Blood Stem Cells or Bone Marrow

Stem cell collection is a procedure that involves separating and collecting stem cells from the blood or bone marrow, then the stem cells are stored for transplant use. 

There are two main ways of collecting stem cells: 

· Apheresis is the process of collecting peripheral blood stem cells (PBSC) from the

bloodstream. 

· Bone marrow collection (harvest) is the process of collecting the cells directly from the bone marrow.

Admission for Stem Cell Transplant

Pre-admission Testing

Before you are admitted for your stem cell transplant, you will need a series of tests. All of the tests evaluate your disease or personal health. Unfortunately, some of the tests are repeats of tests you have already had, but they need to be done within 30 to 45 days of your transplant.  (NOTE:  My tests begin October 10.)

Conditioning Phase

During the conditioning phase, patients receive high doses of chemotherapy and/or total body irradiation before the transplant. This:

· Eliminates the existing bone marrow cells to make room for the donor’s new, healthy cells

· Destroys any existing tumor cells if there is cancer or a tumor

(NOTE:  my doctor has already decided on the FCR regimen.)

Stem Cell Infusion

The collected cells are infused after the completion of the high dose chemotherapy and/or radiation. Using your CVC, the cells are infused into the bloodstream, similar to a blood transfusion. The infusion lasts from 30 minutes to several hours.

Initial Recovery Period

After the stem cells are infused: 

· You will stay in the hospital for about three to four weeks while your counts recover. 

· Your treatment team will monitor your blood counts daily and help manage any side effects. 

· You may take many IV medicines and fluids. 

· Once you have “engrafted,” meaning that your white blood cells have recovered, and you are eating and drinking well, you will be discharged from the hospital.

· Each patient will be evaluated on an individual basis and circumstances will vary. For example, you may need to stay in the hospital if you have a fever or other condition requiring care.

Follow-up/Post-Discharge Recovery

After being discharged from the hospital:

· During this time, you must have a caregiver with you 24 hours a day.  

· You will be monitored in the Ambulatory Treatment Center (ATC) for up to 100 days after the transplant.  Some patients may need to stay longer in the ATC. Follow-up is generally every day and will adjust to every other day or twice a week depending on your health and needs.  

· Each patient will be evaluated on an individual basis and circumstances will vary

· Our goal is that you will be able to return home after the first 100 days, but this may vary depending on individual needs. Once you are told that you may leave the Houston area, you will continue to have follow-up appointments with your cancer or primary care physician in your home community. Some patients may require continued monitoring and symptom management. If this is the case, you will need to stay within 30 minutes of MD Anderson until your physician tells you it is okay to stay further away.  

· Before you are discharged from the Houston area, you will attend a survivorship class.

Once you are discharged home, you will be asked to have regular lab tests done and the results will be sent to MD Anderson for review. You will need to return for tests and exams every three to six months for at least the first year and then every six to twelve months thereafter. This will vary for each patient, depending on your condition. Your physician will make the follow-up plan for you.

Potential Complications of an Allogeneic Transplant

Complications could occur when having an allogeneic transplant. These are: 

Graft Failure

The immune system may reject the transplant. This is uncommon because the chemotherapy and/or radiation given before the transplant suppresses (damages) the patient’s immune system.

Graft-Versus-Host Disease 

Graft-versus-host disease develops in patients who receive any type of allogeneic transplant.   GVHD occurs when the new bone marrow (the graft) reacts against the tissues of the body (the host). There are two forms of GVHD: acute GVHD (short-term) and chronic GVHD (long-term).

Acute GVHD

Acute GVHD happens in the first 100 days after a transplant. You will receive medicines before, during and after the transplant to help prevent and/or treat acute GVHD. The seriousness of GVHD varies from mild and temporary to serious and chronic. It can be life-threatening.

Chronic GVHD

Chronic GVHD develops from three months to several years after the transplant, and it affects multiple tissues in the body.

Weakened Immune System

The immune system is very weak for several months after an allogeneic transplant. It takes over a year for the immune system to recover completely. The first three months after a transplant are critical. Physicians normally prescribe antibiotics during this period, and they monitor patients closely for infections.

Just as an FYI, this is just a nibble of all the information that we have been ingesting over the last couple months.  Please pray for my doctors (and us) as we decide which course of action to take and when.  I hope these excerpts provided some answers to the many questions that have been asked. 

Walking with Him…

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