June 16, 2023

The Goal is Still Cure; And Cure is Still Possible

Okay, folks.  The news is NOT GOOD. Let me just start with that spoiler and not sugar coat it.  We did not get news we were all hoping and praying for.  We're going to do a pivot and keep trying.  We are not giving up.  The goal is still cure and cure is still possible.  But the news is bad.

Information gained from Bone Marrow Biopsy

1.  So when they did the bone marrow biopsy they took out a rectangle of bone marrow.  They were measuring how many cells were in that rectangle and what type of cells.  In a normal healthy person my age, there should be about 60% cells.  In a chemo patient who has just completed the 7+3 regimen I did, we were hoping and looking for less than 5% cells.  I had 70% cells.  Too many.  And to boot - of those 70% cells, 90% are leukemia cells. 

So here's the takeaway: THIS ROUND OF CHEMO DID NOT WORK.  We will never know why; it just didn't work.

2. We also got the chromosomal/genetic abnormality typing that we were missing.  This will mean nothing to most of you, but for the scientists out there reading it's a translocation 6;11.  When we think about AML being divided into 3 categories "best outcomes," "intermediate outcomes," "poor outcomes," this one puts me in "poor outcomes."  So, it's not what we wanted, but it doesn't change: the goal is still cure and cure is still possible.  

Next Steps

So, we pivot!  This round didn't work and we need to get to Goal 1: Remission.  So, we're starting a whole new 2 week chemo treatment plan TODAY!  This is gonna get a little medical-wonky so it's for the nerds out there!

The new chemo regimen is called FLAG-Ida + Ven.  Here's a list of all those drugs:

FL=fludarabine (IV, once a day on days 2-6)

A=AraC (also known as cytarabine) - Any A+ students will recognize that this one was in the first regimen.  It's the "backbone" of this treatment and doses are way way higher than the first go round.  This will be given IV, once a day, days 2-6)

G=Growth Factor for white blood cells (Zarxio) IV, once a day, days 1-7

Ida=Idarubicin (this is in the same family as daunorubicin from the first go round, but slightly different.  We'll hope it works better).  Days 4-5 IV

+Ven= Venetoclax (oral med, once a day, days D1-14)

If you skimmed all that start reading again because I'm going to talk some English.  This is an extremely aggressive treatment plan.  It is the MOST aggressive thing out there.  We are grateful that I am young and otherwise healthy and I can handle this slurry because it's a LOT. 

The potential side effects are similar.  We'll work hard to control nausea no matter what.  There is likely to still be: fatigue, weakness, low blood counts, loss of appetite, need for lots of blood products, and probably more of these neutropenic fevers (forgot to mention I've been fevering again since last night.....low grade this time. We're running cultures.  This is just what's gonna happen). Possible mouth sores.  Plus a handful of rare scary ones we aren't going to mention.

So, we're marking TODAY, JUNE 16 as DAY ONE of Induction Phase Chemo-B.  

We also know from these results that after we get to Goal 1: Remission, we will definitely need a bone marrow transplant.  So, Goal 1: Remission, Goal 2: Bone Marrow Transplant. The timeline is squishy of course, but maybe late October, early November for that.  The best donors are under 40 so they've already alerted the transplant team and they'll start doing what the need to do to find a match when we get there.  The goal is still cure and cure is still possible.

Prognosis

So, I asked for some prognostic statistics about all this info.  The genetic/chromosomal abnormality Translocation 6;11 that I mentioned above still has a 40-50% chance of cure (with bone marrow transplant).  The Hardys have stared down worse statistics before and come up winning.

And the chemo regimen that I'm starting has been studied at MD Anderson Cancer Center in Texas and in patients who were refractory to the 1st round (meaning the 7+3 didn't work, like with me), they saw 69% of patients get to remission with the FLAG-Ida +Ven.

So there is some hope on the horizon and we will cling to it.   The goal is still cure and cure is still possible.

I will be here at the Cancer Center for at least four more weeks.  It will be two weeks of this chemo and then approximately two weeks of letting my counts recover so I can go home safely.  That's mid-July at least and later than I was hoping for, but I will put my big girl pants on.  We gotta do whatever we gotta do to get to Goal 1: Remission.  In three more days, my COVID protocol will end and I'm hoping that will feel like a game changer.  I've been promised a move to a big corner room that the nurses make sound like a Penthouse suite.  And I can walk the halls with my pole and go to Recreation therapy and just experience a bit more freedom.  

All we can do is pick ourselves up, pivot and take the next small step towards the goal.  I'm grateful to have you all alongside me, cheering me on.  It helps me keep a positive attitude even on days when the news is undeniably bad. 

Let's beat this thing. Go for Cure.


P.S. If you're 18-40 and want to be added to the Bone Marrow Registry you can click that link. You may not match with me, but you might match with someone else who needs bone marrow, too. 

47 comments:

  1. Continue to lift you and your body up to the best physician, For He knows your needs and praying praying fervently daily for the regiment with the best result. ❤️❤️

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  2. Hard news to hear. May gentle hope and peace surrounded you ❤️.-K.Neal

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  3. We continue to hold you in our hearts and prayers and love you and your precious family all the way to remission and complete healing!!! ❤️❤️❤️. Gene and Ellen

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  4. Sending love and prayers for you and your family that the power of prayer and conventional medicine will bring about remission and complete healing. Stay strong and know that we are with you all.

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  5. Chrissy, You are the Greatest and you have our prayers!!! The cure will soon be here. We love you so much!!! Thank you for your example of powerful faith, wonderous hope and never ending love. Much love and prayers, Uncle Marvin and Aunt Pam

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  6. Chrissy, you’re an inspiration to us all! Love the positive! ❤️. You can beat this!

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  7. Chrissy- you’re right; this is not the news we wanted, but you still will get there. Warriors are praying and you’re doing the hard work there. You’re a brave and courageous fighter. We love you!❤️ Charlotte and Rick

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  8. I am wishing the best of luck for you on this. I am registered in a bone marrow registry… but if you need me to double check on my AB+, it’s a can do!

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  9. Praying for remission and getting through one day at a time…love and prayersπŸ™❤️
    The McCombs

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  10. Love and peace and hope and joy for the journey. I'm holding you in my heart just like I did baby Clara.

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  11. Chrissy, I am at a loss for words. I am in awe of your strength and attitude and I believe there’s nobody stronger than u to beat this thing. My prayers are with all of you.

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  12. Love and prayers abound. Grateful for the treatment to lead to cure.

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  13. I know it is not the news you wanted to hear but we are praying for these next steps to work. You are so strong. Keep your spirits up and we will be praying every day. πŸ™πŸ™πŸ™πŸ™❤️❤️❤️🀷‍♀️

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  14. Disappointed in this news but your determination is inspiring! There is great strength in that determination and strong will! Praying for you in the coming days to push through this challenge. ❤️❤️ Jodi

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  15. Praying for strength as you move towards Remission.

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  16. Thank you for updating us daily. You are so amazing! I hope you get your bigger room soon. Sending hugs and prayers. Judith

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  17. Chrissy, it’s been a long time, but following your journey and rooting for you ❤️ Diane (Blackburn) Burks

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  18. Praying for you and your family at Tuckasegee Wesleyan Church. Twc. Love to all.

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  19. The words I’m looking for are not appropriate for public commenting.

    Damn, friend. I hate this. And you’re right. You’ve been up against these odds before. Prayers for you and Robert and the girls and just, F*%! Cancer.

    (PS. You’re still unstoppable 😘)

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  20. Chrissy, you are just amazing… inspiring US as you deal with this huge hit from today. I went to Fleet Feet yesterday and the associate had a cross tattoo with Joshua 1:9 beneath it. She said she was a runner and had been hit by a car while running. Significant injuries. The passage:

    Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.

    This one’s for you…!❤️
    Melanie W

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  21. Chrissy, I’ll NEVER forget a time in my life when just surviving day to day was hard. I didn’t think that any of my friends knew just how difficult life was for me. One day I walked into my classroom and there was a sweet note on my desk. It read:
    “ 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 a hope and a future.” Jeremiah 29:11
    I took that note home and taped it beside my bed. I read it every night before I went to sleep. I still have that note….. that YOU gave me. I am now praying it every night for you my friend. As you know, nothing is impossible with God. I am also praying and trusting God to give you strength, resilience, patience, hope, and total and complete healing. ❤️

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  22. You are surrounded by love. Always, Melissa and Adrian

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  23. Am I allowed to swear in the comments? Better not, I suppose, but I let fly a whole chain of expletives in the privacy of my own home. All my positive and loving thoughts are with you and whole Hardy clan! My family is a long list of folks who prove that sucky cancer can be beat into remission and cure, and you will get there too. In other news, you are such a wonderful writer (weird to comment on that given the nature of things?). Thinking of you daily.

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  24. Ii read this late yesterday and my heart skipped a beat and I wept. I can only imagine how difficult this news was to hear. And the, I immediately caught myself exhaling a hopeful breath as I remembered the way you pursued the fight for Clara all those years ago - learning all you could about her condition, asking the questions (the hard ones to hear answers to also), doing everything they asked of you, being fully present every day, and leaning on God BIG time to work a miracle - so you know this routine... and it is evident to me you are already following that tried and true protocol! I am praying and trusting the goal which is a mirror image...CURED...not only CURED, but in time, THRIVING...proves to be yet another wonderful Hardy miracle just like our miracle Clara. I am marking this date as the date FAITH, HOPE, and DEEP LOVE stepped in mightily to see you through Plan B victorious. No doubt you will have hard days, discouraging moments, and times where tears escape, and that is all part of this journey. Know that God is holding you in the palm of His mighty, loving, and capable hand ALWAYS so when you need to let go of your warrior pose for a short time, He's got you. And know that we are all standing steady, in an attitude of continual prayer, in a circle of faith, hope, and deep love around you day and night. "All will be well and all will be well, and all manner of things will be well." - Julian of Norwich

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  25. Now I have another reason for wishing that I were younger and could participate in offering some of my good health. My prayers and warm and good wishes are headed your way today and every day with love. Anne Comperr

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  26. Many prayers for you and your precious family! God is the Great Healer!

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  27. Page Dancy here. My prayers and positive thoughts will continue in earnest until you say the word CURED! Plan B sounds very rigorous, but like you said, ain’t nothing for the Hardys! You will be on even more of a roller coaster than before with all these drugs, so let the emotions fly. Your nurses are used to it and you have your sweet momma and husband there to help soothe you. Let go of all of it to our Lord. He alone will be able to see you through. Thank you for the updates. I am sure writing is tiring, but cathartic as well. I love you ❤️

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  28. Never wishes I was 39 more than after reading this. Onward on the path you have been given. Praying hard.

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  29. They'll only let you register if you're under 40, but you're still on the match list until age 60. I'm got on the list before the big 4-0 -- and I have curly brown hair and I'm part Welsh so here's hoping! Prayers going up! -Carol C.

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  30. Chrissy. Thanks for your honesty and for this informational report! Praying for the goal of remission as your enter round 2!

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  31. I like your optimism...40-50% is certainly better odds than you all have heard before; so we're on this cure train with you, praying all the way!
    Cindy C.

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  32. Praying for you, Chrissy. Sending love.

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  33. You and your family are in our hearts and prayers every day. We are all focused on helping you reach your goals.

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  34. 26 Jesus looked at them and said, “With man this is impossible, but with God all things are possible.” Praying for you and your family πŸ™❤️😘

    Dinah

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  35. Linda.massler@gmail.comJune 17, 2023 at 12:54 PM

    At times like these, I grope for the right words and come up empty. Nobody, unless they've been there, can begin to imagine how you and your precious family feel, how icky the therapy makes you feel physically, or how much all of you want you to be back home with you in the middle of all things Hardy. The one thing of which I can be certain is that we aren't ever alone on the worst days, even when we can't feel God's presence. I gave up asking why years ago and know that no answer will come that satisfies me. Please know that hundreds or more of us are with you in this fight. We won't give up or stop peppering Heaven with our incessant prayers for you, your family, and for your complete cure. May God heal your body and fill your soul and mind with His peace and comfort. ♥️Charlie and Linda

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  36. I was so sorry to hear your biopsy results and that you have to go through another round of chemo but I hope and pray the second round will be a winner. It’s so comforting to know what a great medical team you have. I’ll have to say that front corner room is huge and you’ll be able to get lots of steps in there! Stay strong and be brave, my friend.

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  37. So sorry for the disappointing, bad news. Your upbeat attitude and persistence will get you down the road to Remission. Know that we are praying for strength for you and all of your family. Cathy & Ken

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  38. Carol Douglass LoweJune 17, 2023 at 7:04 PM

    Hugs and love Chrissy. Your Baxley family is ready to do anything we can to help you reach remission. You’re an inspiration. We’re cheering you on!!!

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  39. Chrissy, the Williams family is praying for you and your family πŸ™πŸΌ❤️

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  40. Chrissy your strength and attitude are beyond amazing. Prayers lifted!
    The Lord bless you and keep you;
    25 the Lord make his face to shine upon you and be gracious to you;
    26 the Lord lift up his countenance[a] upon you and give you peace.

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  41. Could you have maybe married someone with the last name Easy? I know, I know, we are never promised life will be easy, but I’m so grateful we know the True Promise, and I’m so grateful your life is in His hands. Continuing to pray for all of you, and so grateful for the family and community you have to lean on. Niki V.

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  42. We are praying for your complete healing and hold you sweet, upbeat positive dear soul in our hearts!!❤️❤️❤️πŸ™πŸ»πŸ™πŸ»
    Roger and Sharon Underwood

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  43. Dang, girl, your explanations sound like the best work of the best medical professional’s! Maybe you should offer to do some coaching. Your positive spirit and fiesty attitude would benefit so many patients, but just remember that KBC has first claim on you and we are not giving you up to either a new medical career or AML! I am repeating your mantra of “Cure is still the goal and cure is still possible” as part of my prayers for you. With love, Mary Hix

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  44. Thank you for posting the biggest science lesson I’ve had in years… don’t know how you do it but thankful for all of it!! Sending prayers of strength and love!! The Swensons

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  45. Chrissy, our prayers are that you will have successful results from your next treatments and most certainly that you will be cured. Blessings to you and your family. ❤️ Cliff and Verlene

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  46. I love your positivity and clarity. I will continue to lift you and your family up in prayer.

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  47. Continuing to pray. Thank you for the updates and ways to pray specifically. God is good, all the time. ❤️

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