December 13, 2018

Navigating our Journey

Earlier this week, I met with my leukemia doctor to go over the various treatment protocols that he presented to me last month. Paul and I had narrowed them down to two, one Standard of Care and one Clinical Trial. Based on how my various “counts” had been heading, Dr. W. and we were all prepared to start treatment sooner than later. And as it turned out, the two we had chosen were on the top of his list as well, especially the trial. However, it isn’t open for 2-3 more months.

But as we took a look at my labs this week, we were surprised to see that they had backed up a bit in each of the areas of importance. Just enough to buy me a little more time and be considered “stable” for the moment. Nothing ever seems to stay that way for long, but the timing was helpful, as I cannot move forward with either of the leukemia treatments until my lungs are clear. The medicine that I am taking for the fungal infection in my lungs counteracts with the main ingredient in both protocols…Venetoclax. So until my lungs are clear and I can get off of Noxafil, the prayer is that this sudden stable reading in my counts might hold strong.

While we were researching the various treatment plans, a sentence seemed to scream out and remind me of the reality of my disease.

“Relapsed or refractory chronic lymphocytic leukemia remains
incurable, despite advances in treatment over the past 5 years.”

Well, that about wraps it up! It went on to say that we (I) have increasingly developed resistance to therapies. (ie…a stem cell transplant that wore off, 2 DLI’s that didn’t work, 2 CAR T-Cells that didn’t work….) “Hence, additional treatments that have alternative mechanisms of action that are effective and have an acceptable side-effect profile are needed.” Thus, the introduction of a variety of monotherapies and targeted therapies. I realize that this is usually where I lose some of you, but many want to know the details.

The Standard of Care option is Venetoclax plus Rituximab. It is showing a 85% 2-year progression-free survival rate, with 17p del patients at 81.5%. Not bad!

The Clinical Trial option is Acalabrutinib/Venetoclax/Obinutuzumab. This is the one that Dr. W. is leaning toward but doesn’t open for a couple months. If my lungs take that long to clear, it might end up being the best option. Acalabrutinib is a newer version of Ibrutinib with supposedly fewer side effects, at least from what has been documented so far. The cool thing about this one is that after it has cycled, the A/V portion can be restarted again if necessary. That is not the case in most trials.

Both options have an extensive list of side effects such as neutropenia, low counts, nausea, diarrhea, rash…all the regular stuff. But I’ve been there, done that, have the t-shirt. The goal is to be here next Christmas and hopefully the one after that! My brother wants me to dance at his 50th wedding anniversary!! I’ll be happy to make our 10th then prayerfully our 15th!!! I am already defying the odds of my disease. I would really like to just blow this whole thing out of the water!! ☺ Only God!

My infectious disease doctor is doing another CT of my lungs on January 2 to check the status of the fungal infection. The problem is that they have no idea what it actually is or how I got it. I/we have been so incredibly careful and protective of where I go and what I do and I STILL got it! :/

So with joy and peace for each day, we will journey on, step by step. I wish each of you the Gift of knowing the One who is the giver of that joy and peace at Christmas and throughout the year.

“May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.”
Romans 15:13




October 15, 2018

When Saints Pray

(I wrote this while still in the hospital. I’m just now getting to publish it.)


The night after seeing our blessed news of “No Richters,” I laid in bed and thought about all the folks who had been praying for me and then imagined what that must have looked and sounded like in heaven.

I could hear a choir of voices rising together, some in unison, some in harmony, echoing through the Throne Room of God. A choir of voices that could not be missed or dismissed. Beautiful yet determined; hopeful yet believing, confident yet respectful. This song of prayer being sung from the hearts of my loved ones, near and far. Your song touched the Heart of God and saved my life! Do you truly understand the power of corporate prayer?

“This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us.”
1 John 5:14

“Then you will call on me and come and pray to me, and I will listen to you.”
Jeremiah 29:12

“And the prayer of faith will save the one who is sick,
and the Lord will raise him up.”
James 5:15

“Again I say to you, if two of you agree on earth about anything they ask,
it will be done for them by my Father in heaven.”
Matthew 18:19

“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.
Philippians 4:6

“Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.”
Hebrews 4:16

“In my distress I called to the Lord;
I cried to my God for help.
From his temple he heard my voice;
my cry came before him, into his ears.”
Psalm 18:6

“And I will do whatever you ask in my name,
so that the Father may be glorified in the Son.”
John 14:13



Thank you for praying me back.





September 4, 2018

I’m the Happiest Girl in the Whole USA

“Shine on me sunshine
Walk with me world, it's a skippidy doo da day
I'm the happiest girl in the whole U.S.A.
Good morning, mornin', hello sunshine
Wake up, sleepy head
Why'd you move that bojangle clock
So far away from the bed?
Just one more minute that's why we moved it
One more hug or two
Do you love wakin' up next to me
As much as I love wakin' up next to you?
You make the coffee, I'll make the bed
I'll fix your lunch, and you'll fix mine!
Now tell me the truth do these old shoes look funny?
Honey, it's almost nine
Now you be careful, got to go
"I love you, have a beautiful day!"
And kiss the happiest girl in the whole U.S.A.
Skippidy doo da thank you Lord for makin' him for me
And thank you for letting life turn out the way
That I always thought it could be
There once was a time, that I could not imagine
How it would feel to say
I'm the happiest girl in the whole U.S.A.
Now shine on me sunshine
Walk with me world, it's a skippidy doo da day
I'm the happiest girl in the whole U.S.A.”

…Donna Fargo



Besides my favorite hymns, I cannot get this song out of my head. It might seem unusual given my current circumstances, but I just keep getting happier and happier. I am reminded of a sweet man from our church that passed away a few years ago from cancer. A few months before he went home to be with the Lord, he woke up one morning exclaiming that JOY had descended upon him! And he experienced and exuded complete joy and happiness for the rest of his days. He was a total delight. Of course, he always was…but God gave him an extra measure.

That is how I feel. Every experience is wonderful. From my morning cup of coffee to the mid-night cuddle with my sweetheart when I can’t sleep. The upset nerve endings on my scalp are a bit much, but other than that everything is coming up roses!

When I posted that I was unable to drive for the time being, several friends lovingly offered up their services. I am humbled and grateful. Needs are being met one by one. God is good…all the time. One just has to ask, and sometimes look for it.

I am so incredibly thankful for the relationship I have with my husband and with our kids. It has not always been easy, but I can say with all assurance that it is worth it. I am thankful for where we are, how far we’ve come, and who we are becoming as a family.

We sorted through tons of paperwork this weekend looking for certain things, tossing and filing others. It was very cleansing. In the process, we found the research paperwork from when I was first diagnosed. That was not something we could throw away. It held too much history for us. But as we read through many of our highlighted excerpts, we realized again that I am a miraculous anomaly. Only God could have gotten me this far. And yet we continue to ask expectantly, thankfully, for more years, more time, more joy.

But no matter what the outcome, today is beautiful. My life is full. My family and friends are amazing. And I am the happiest girl in the whole USA.



August 29, 2018

Seven Years and Counting!

Today marks seven years since that fateful day in 2011 when my future was forever changed, or at least revealed. Cancer does that to you. Whether you are a survivor, an ongoing fighter, a caregiver, or the family left behind, you will never be the same. While this was not a shock to God, it most certainly was to us! I will never forget one minute of that day. I can still envision the moments in the waiting room, the doctor’s words/voice/tone, his simple “I’m so sorry…,” the stack of papers that I left with, my call to my mom/to Paul, pouring over those papers with him at a Chinese buffet, and sitting at this very computer a hour later when he walked through the door announcing that THIS is where he needed to be. That was when it hit me. I had cancer.

Fast forward seven years, one stem cell transplant, two CAR T-Cell trials, two donor lymphocyte infusions, one parathyroidectomy, one knee replacement, a jillion trips to MDA, and a partridge in a pear tree later and I still have cancer with all the trimmings. But I’m still here!!! I have outlived a business partner and a dear church friend. Survival guilt is a real thing. Many of you may wonder why I push myself the way I do to see my friends and family. It’s simple. I really have no idea how long I have left. None of us do, to be honest. Maybe a year. Maybe ten. All our days are numbered. I simply choose to make mine count as much as possible. No worries. No fussing. Just love of God, family, friends, and this beautiful world He has given us. It’s really pretty simple.


“Teacher, which is the greatest commandment in the Law?”
Jesus replied: “‘Love the Lord your God with all your heart and with all your soul and with all your mind.’ This is the first and greatest commandment.
And the second is like it: ‘Love your neighbor as yourself.’
All the Law and the Prophets hang on these two commandments.”
Matthew 22:36-40

“Let the heavens rejoice, let the earth be glad;
let the sea resound, and all that is in it.
Let the fields be jubilant, and everything in them;
let all the trees of the forest sing for joy.”
Psalm 96:11-12


Life is good. And I am thankful.



August 10, 2018

It Hit Me Last Night

We have been SO busy making the most of every moment, taking care of mom, and just trying to keep up with all that is going on with those closest to us that the gravity of what I am about to embark on didn’t really hit me until last night. I have been teasing that I am going on a three-week vacation to MD Anderson! And maybe next time I’ll choose someplace like Cabo!!

The fact of the matter is this is a bigger deal than I may have intimated. And the fact that I “look so good” doesn’t help folks from thinking that I’m really ok and that this is probably not that serious. I have been very fortunate to be able to maintain my non-sickly appearance, but I truly believe it has a great deal to do with attitude. The Lord has been gracious to me and given me the ability to not worry…at least not about this. ☺ Worry doesn’t add a moment to our life…really only takes away.

The part that hit me last night was not being sick from the chemo or whether or not the cells will buy back my remission, it was the fact that I will not get to sleep next to my Paul for three weeks. :/ That is by far the hardest part. It was the first time I have cried about any of this. But I guess it’s a payoff. Hopefully, prayerfully, these three weeks will buy us many more years of time together. So we sacrifice three weeks for three years and hopefully more…lots more!

Yesterday, I was talking with my dear friend about trials and how some folks have a skewed view of them and their purpose in our lives. We have mistakenly thought that trials are given to us to make us stronger, but that often creates a dependence on self rather than the Lord…an “I’ve got this” mentality. Perhaps our trials should drive us to lean more on the Lord, into The Word, into His Arms, under His Wing… time spent with Him, even in our heart, mind, and prayer. When we lean on Him, our confidence and trust is through Him, and that is what makes us stronger.

So as we each walk our own journey, let us lean on our Saviour.

“The Lord is my strength and my shield;
my heart trusts in him, and he helps me.
My heart leaps for joy,
and with my song I praise him.”

Psalm 28:7




July 9, 2018

We Are Not Consumed!

In the past weeks and months, we have learned of at least two other dear friends who have been diagnosed with the dreaded Cancer and other illnesses. We have heard of folks who have lost loved ones. We have again endured more hope followed by shattered dreams in the work place. We have watched loved ones walk difficult relationship roads. We watch families continue to rebuild almost a year post Harvey. And I am preparing once again to enter MDA for a three-week trial in hope of once again of reaching remission. Life is just hard sometimes.

This morning, my reading took me to Lamentations 3 where Jeremiah is lamenting his and his nation’s afflictions. It sounds worse than anything any of us have been going through here, but, of course, I guess it’s all relative.

“I am the man who has seen affliction by the rod of the LORD’s wrath.
He has driven me away and made me walk in darkness rather than light;
indeed, he has turned his hand against me again and again, all day long.
He has made my skin and my flesh grow old and has broken my bones.
He has besieged me and surrounded me with bitterness and hardship.
He has made me dwell in darkness like those long dead.
He has walled me in so I cannot escape; he has weighed me down with chains.
Even when I call out or cry for help, he shuts out my prayer.
He has barred my way with blocks of stone; he has made my paths crooked.
Like a bear lying in wait, like a lion in hiding,
he dragged me from the path and mangled me and left me without help.
He drew his bow and made me the target for his arrows.
He pierced my heart with arrows from his quiver.
I became the laughingstock of all my people; they mock me in song all day long.
He has filled me with bitter herbs and given me gall to drink.
He has broken my teeth with gravel; he has trampled me in the dust.
I have been deprived of peace; I have forgotten what prosperity is.
So I say, “My splendor is gone and all that I had hoped from the LORD.”
I remember my affliction and my wandering, the bitterness and the gall.
I well remember them, and my soul is downcast within me.”

Lamentations 3:1-20


How many times have we felt like Jeremiah? I remember when Isaiah felt very much like this. When David did. When I did. When those close to me have. But God!

“Because of the LORD’s great love we are not consumed,
for his compassions never fail.
They are new every morning; great is your faithfulness.
I say to myself, “The LORD is my portion; therefore I will wait for him.”
The LORD is good to those whose hope is in him, to the one who seeks him;
it is good to wait quietly for the salvation of the LORD.”

Lamentations 3:21-26


I do have to say that the rest of the chapter continues with more suffering but also with the faithfulness and compassion of God. So what should we do?

“And be not conformed to this world: but be transformed by the renewing of your mind, that you may prove what is that good, and acceptable, and perfect, will of God.”
Romans 12:2

“Be anxious for nothing; but in everything by prayer and supplication with thanksgiving let your requests be made known unto God. And the peace of God, which passes all understanding, shall keep your hearts and minds through Christ Jesus.”
Philippians 4:6-7

“Cast your cares on the LORD and he will sustain you;
he will never let the righteous be shaken.”
Psalm 55:22

“Let the peace of Christ rule in your hearts,
since as members of one body you were called to peace. And be thankful.”

Colossians 3:15


Let your light shine bright!

“Light dawns in the darkness for the upright; he is gracious, merciful, and righteous.”
Psalm 112:4

“For it is you who light my lamp; the Lord my God lightens my darkness.”
Psalm 18:28

“The Lord is my light and my salvation; whom shall I fear?
The Lord is the stronghold of my life; of whom shall I be afraid?”
Psalm 27:1

“For at one time you were darkness, but now you are light in the Lord.
Walk as children of light.”

Ephesians 5:8


“You came near when I called you, and you said, “Do not fear.”
Lamentations 3:57


Praying for His Light to light up your darkness, show you the way, or just be a beacon on the hill to give you encouragement.


June 5, 2018

We Have a Plan!

My team called yesterday to go over the schedule for my upcoming trial. Things usually pivot from the day they do the cell collection, so that’s where we started. I had a conflict with the first option, so we went with the second…which will be on my brother’s and one of my dear friend’s birthdays, June 19. Before collection can happen, all the pre-tests have to be run. So some of those will start this Friday, June 8, as I was already scheduled to see Dr. H anyway. The remaining tests and the signing of consents will be done the following Friday on the 15th. On Monday, June 18, I will once again receive either a CVC or a PICC line. They haven’t made that final determination. But having done this a few times, I imagine it will be a PICC line. I have only had to have a CVC (the one in my chest instead of in my arm) when I had my transplant.

After the apheresis (extraction of my blood for the removal of particular cells and the returning of the remainder to circulation), it will take 4-6 weeks for the cells to be reengineered and be ready to be returned to me via the trial (CAR T-Cell, Phase 2). That will put my inpatient portion of this shindig approximately early August. I will be in six days to receive pre-treat chemo and prepare for the infusion. These are considered Days -6, -5, -4…. The infusion with be on Day 0. Then I’ll be there for probably another week or so afterwards for monitoring. If everything goes ok, I should be able to go home after that and just come back for my frequent check ups…weekly, bi-weekly, then monthly.

So, we are thankful to have a plan in place. This is very similar to what we did in 2015, but the trial has been revamped…prayerfully with better results. And that is where you come in. Please pray with us for limited side effects and maximum results. The possibilities are endless both ways. But as always, I am in the Hands of my Almighty Father, the Great Physician, the King of Kings and Lord of Lords. What could possibly go wrong?! ☺


April 27, 2018

I Think We Have a Plan

For the past four weeks, we have waited patiently, researched, read, and prayed. Last night, we prepared ourselves for the possible outcomes and how we would respond. Today, we received the ok to be able to proceed with what we feel is the best option for us. CAR T-Cell, Phase 2.

Some of you may remember me having a CAR T-Cell trial back in 2015 that didn’t end up working. Well, they have taken the information from that one, improved it, and have come up with a much more effective outcome. Plus, they have changed the primary makeup of the CAR (chimeric antigen receptor) so the antibodies that I have developed will not be a factor against me.

This trial includes the FC (Fludarabine/Cytoxan) pretreatment, so it will be a bit more toxic than my last one. And I will be in the hospital for two weeks, which is a little longer than before. But as from the beginning, our choices of more aggressive treatment options have played a key role in keeping me alive. That along with a lot of prayer and God’s gracious timing. Dr. H said today that with my P53 deletion, I would not have made it this long without our proactive attack measures. It was encouraging to hear that we have made the right choices. I guess the fact that I’m still here is evidence enough, but it was still nice to hear.

What was interesting to hear was her suggestion of a second transplant. We have pretty much left that as a last ditch effort after having done everything else because the statistics of dying during your second transplant are significantly higher. Well, she told us that those statistics are mostly because second transplants are usually done within a very short time after the first one not working. Since it’s already been six years since my first and it will hopefully be another year or two or five (or ten) before I get to the point where I have no more options, she said that my odds are really great for a second transplant! Much like they were for my first one. So that was really good news. Not that I want to do that again any time soon, but the fact that it’s an option is comforting.

So all that to say, I don’t think I’ll die this year. ☺ I’ve got stuff to do, places to go, people to see, cookies to bake. But I’ll be busy this summer getting my mojo back.




March 30, 2018

The Results Are In

The hours ticked by today and I finally figured that since it was Good Friday that I was probably not going to hear from my team. But around 6:30 pm, Dr. H called with the results of my bone marrow biopsy, cytogenetics, and flow cytometry reports.

In a nutshell, my CLL percentage is up from 20-30% to 50% in five months. The P53 deletion is still a thing. And my donor cell percentage continues to inch downwards little by little. You know how when you think of the Lord, the phrase is “less of me and more of Him.” Well, that was the goal with my donor! But it’s going the other way. :/

Dr. H is meeting with all the various doctors who head up the various CAR trials and is trying to figure out which one I will qualify for and will be the best fit. I mentioned before that there is a big question regarding the NK trial, but the Phase 2 T-cell trial might work. She told me tonight that there is even a trial through Baylor that she is looking into. So I have absolutely no idea. Please pray for my team as they assess these various options for me.

Until the end of April when I go back to see Dr. H (then early May when I see Dr. W, my leukemia doctor), I will just be patiently waiting. They have given me some suggestions to try to help with the fatigue, which has gotten progressively worse, so I will work on that for the time being. And I will enjoy the sunshine, the flowers, the warm weather, sitting on the porch with my sweetheart, going to Oletha, family, friends, good food, conversation, and all the other good gifts that our Good Lord has given.

And then we’ll take the next step. Thank you for walking and praying with us along this journey.

Because of Him, it is still a Good Friday.

“Praise be to the God and Father of our Lord Jesus Christ!
In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead.”

1 Peter 1:3



March 23, 2018

Another Bump in the Road

I’m tired, my hip’s sore, and I really don’t want to talk about this right now…but I know there were many who prayed for me today and I want to share at least what I know at the moment. I won’t have the important results back for one to two weeks. My regular labs are hovering around the same as they have been. Lymphocytes up, neutrophils down. Platelets hanging in there.

The news that threw me for a loop today was that the trial (CAR NK) that I had already been approved for (by MDA and by my insurance company) may no longer be available to me due to my previous participation in the CAR T-Cell trial. Dr. H said that the lead NK trial doctor has gone back and forth regarding my eligibility because the product used to develop the chimeric antigen receptor (CAR) in the Phase 1 T-Cell trial is the same as that of the CAR NK trial. They have seen situations where patients have had second CAR trials, and the subsequent trial did not work because the patients had developed antibodies to the antigen so it didn’t “take” the second time. They are concerned/convinced that the same thing would happen in this situation. So it would be pointless to subject my body to two strong pre-treat chemotherapy drugs when my body will most likely reject the antigen (CAR).

It took us quite a while to wrap our heads around this trial in the first place and get to the point that we were ready to move forward…and we were finally comfortable with our decision, should the bone marrow biopsy comes back as expected. And then WHAM! Time to rethink again! Dr. H is going to re-present my case AGAIN to the team to make certain of their concerns. She also reminded me that the Phase 2 CAR T-Cell trial is still on the table. It uses a different type of product (not mice) in the preparation of the CAR so I would not have the same risk of rejection. I had thought that Phase 2 was only for lymphoma and ALL patients, but that was for standard care. It is still available as a clinical trial for CLL. So there’s still a possible option for me to achieve remission. Sigh.

All of this to say it’s been quite a day. I am thankful for my friend, Deidra, who drove me, talked with me, and kept me sane! I am ever thankful for my medical team who answers my endless questions, even after I get home. I am thankful for my husband and family who loves and upholds me and helps me remember stuff! And I am thankful for my God who calms the waves when the storm rages and carries me when I just can’t take another step until I am filled with His strength to once again journey on.

“God is our shelter and strength, always ready to help in times of trouble.”
Psalm 46:1

“The righteous call to the Lord, and he listens; he rescues them from all their troubles.”
Psalm 34:17

“Whoever goes to the Lord for safety, whoever remains under the protection of the Almighty, can say to him, “You are my defender and protector.
You are my God; in you I trust.”
Psalm 91:1-2




February 6, 2018

Rest for the Weary

Today, one of my dear friends is downtown at MD Anderson having tests run trying to find answers to yet another physical disorder most likely caused by the heavy drugs used to save her life from cancer years ago. Oh, the double-edged sword!

Another friend’s life is hanging in the balance, continuing the fight to recover from a lung transplant.

I am on a treadmill currently, slowly walking through life, enjoying the scenery, stopping every two weeks to check my labs…. This is the plan through March 27.

As I opened the Word this morning, I was reminded to “Come and Rest!” The road ahead of us may be unknown. It may be steep and scary. But we have One whose Hand we can hold onto tightly. Sometimes He walks with us. Sometimes He carries us. Sometimes He holds us close. Sometimes these hard times are the only way He can teach us, or those around us, the lesson He wants us to learn.

“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

“…and in the wilderness where you saw how the Lord your God carried you,
just as a man carries his son, in all the way which you have walked
until you came to this place.”
Deuteronomy 1:31

“Even there your hand shall lead me, and your right hand shall hold me.”
Psalm 139:10

“My soul finds rest in God alone; my salvation comes from him. He alone is my rock and my salvation; he is my fortress, I will never be shaken.”
Psalm 62:1-2

“The Lord replied, ‘My Presence will go with you, and I will give you rest.’”
Exodus 33:14

“You will keep in perfect peace those whose minds are steadfast,
because they trust in you.”
Isaiah 26:3

“The Lord is my shepherd, I lack nothing. He makes me lie down in green pastures, he leads me beside quiet waters, he refreshes my soul.
He guides me along the right paths for his name’s sake. Even though I walk through the darkest valley, I will fear no evil, for you are with me;
your rod and your staff, they comfort me. You prepare a table before me in the presence of my enemies. You anoint my head with oil; my cup overflows.
Surely your goodness and love will follow me all the days of my life,
and I will dwell in the house of the Lord forever.”
Psalm 23

“I have told you these things so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”
John 16:33




January 18, 2018

What’s Next?

As many of you know, and have been so kind as to continue encouraging and praying for me, last Friday was hard. The Lord has been so incredibly gracious to me these past years in helping me to stay positive and joyful throughout this journey. But every once in a while, when things continue to go the wrong way, you just need a day to regroup. Friday was mine.

In keeping things in perspective, I am not dying…today, or next month. “You look so good!” Yeah, well thanks! Tell my cells! I have friends, and folks I meet at MDA, who are on the brink of death. My heart breaks for them. I understand! And I understand that I am not there yet, this time. Where I am is in an ever-declining state of an incurable disease. Cancers with masses that can be removed and then the area radiated and treated with chemo can be “cured.” Leukemia is a blood cancer. You can’t cut it out, radiate it, and be done with it. It’s just different. It affects your whole being at its core, at the cellular level. Much has been discovered just in the six plus years since I was diagnosed. There are drugs and treatment plans that are being used now that had never even been heard of six years ago. So there is a great deal of hope for the future. But one has to live long enough to get there.

I have already used up several of the protocols that are available to me. I have had a stem cell transplant (which bought me two years of remission) and had two of the major chemo drugs utilized for my disease. I could conceivably have used them one more time in the future, but since I have 17p deletion, I am chemo resistant, so chemo is pretty much off the table except for anything other than a pre-treat drug. It’s not going to work long term. I have had the CAR T-Cell Trial, but that didn’t work…other than keeping me in minimal residual disease status (MRD) for a year or so, but it did not achieve remission. Over the last couple years, my numbers have continued to steadily climb/decline, and my team decided to move forward with the Donor Lymphocyte Infusion (DLI)…one last summer and a second in December. Neither has worked. My numbers continue to go the wrong direction.

The only options I have left are the CAR NK (Natural Killer) Trial which is a very new trial utilizing cord blood rather than my own or my donor’s. The second option is to wait until my numbers meet the specifications of the Leukemia Dept for treatment (I’m almost there) and go on one (or more) of the targeted Leukemia drugs (Ibrutinib, Venetoclax, Zydelig). The thing about those is that they are not designed to bring you to remission. They just keep you from dying…which is a good thing. But most CLL patients are much older than me when diagnosed. If I had been 70+, had been through all I have been through, had bought six years, and then was being offered a drug that could possibly give me 2-5 more years, then I would be all over that. But I was 50 at diagnosis. I am now 56. I am looking to buy a couple decades, not just a couple years! I need to try everything I can to achieve remission…even if it’s scary.

Which brings me back to the CAR NK Trial. I wrote my doctor team last Friday afternoon, thanked them for the amazing care they all have provided me over these past years, but let them know that on that particular day I felt a bit hopeless. My numbers continued to creep in the wrong direction but weren’t yet (by one point in one area) in the range of treatment for the Leukemia Dept. It is difficult to determine “fatigue” when I have been dealing with it ever since the stem cell! And I have never had issues with my platelets. God has just protected me from that the whole time! And if my goal is remission, the only real option at this point is to reconsider the Trial. Before I had the second DLI, there had only been three people who had entered the trial and one had died. Not good odds. Since then, more have joined, with better odds.

“The goal of this clinical research study is to learn if giving genetically changed immune cells, called CAR-NK cells, after chemotherapy will improve the disease in stem cell transplant patients with relapsed (has returned) and/or refractory (has not responded to treatment) B-cell lymphoma or leukemia. Also, researchers want to find the highest tolerable dose of CAR-NK cells to give to patients with relapsed or refractory B-cell lymphoma or leukemia. The safety of this treatment will also be studied.
This is an investigational study. The making of and infusion of genetically changed NK cells and the drug AP1903 (if you receive it, explained below) are not FDA approved or commercially available for use in this type of disease. They are currently being used for research purposes only. The chemotherapy drugs in this study (fludarabine, cyclophosphamide, and mesna) are commercially available and FDA approved.
Up to 36 patients will take part in this study. All will be enrolled at MD Anderson.”
ClinicalTrials.gov

So for those of you who are into details, there you go. That’s it in a nutshell. I got word today that they are going to contact my insurance company for pre-approval just to have it ready and on the table for when my body recuperates from the DLI. (You have to wait a certain amount of time between treatments.) This one is a bit scary, and I will have to be in the hospital for a few weeks. The pre-treat is pretty intense, but I just don’t see any other options at this point. Go big or go home.

So that’s it, my friends. Until then, they continue to check my numbers every two weeks. They are trying to figure out why my knees went south again. And we continue to take each day with joy and a thankful heart. Joy comes in the morning. I just had to get past Friday.


Let all that I am praise the Lord; with my whole heart, I will praise his holy name. Let all that I am praise the Lord; may I never forget the good things he does for me. He forgives all my sins and heals all my diseases.
He redeems me from death and crowns me with love and tender mercies.
He fills my life with good things. My youth is renewed like the eagle’s!

Psalm 103:1-5