Update: It’s time for Plan B

Before I give you my update, I want to send our love to the family and friends of Emru Townsend and Hector Arenas.  These guys were amazing individuals and fought an incredible fight and they will forever be in my heart.

I want to congratulate Graham Barnell and his family on returning home to Melbourne after months in Seattle for a double cord blood transplant.  Graham and his wife, Samantha, are paying for the treatment ($500,000+ USD) out of their own pockets and I appeal to all of you to pleeeeease help support this family’s brave journey to save Graham’s life by donating towards their medical fund.

I want to cheer on Michelle Maykin and her husband Van, who are away from home for a double-cord transplant in Seattle’s Fred Hutchison. Michelle’s incredible strength and positive attitude have been always been a source of inspiration and reminder for me to stay strong each time I feel like I couldn’t handle this anymore.  I wish for nothing but all of Michelle’s “I want’s” to come true as soon as possible!

Also a cheer to Dr.Guha and his family who are also away from home for an unrelated match transplant in California’s City of Hope.

As for me….

Me, my Mom and my childhood friend, Susana, from Vancouver just spent all last week in Baltimore, Maryland to meet with the transplant team at Johns Hopkins Hospital.

One appointment with one doctor, ended up being multiple appointments throughout the week with 2 different doctors, various coordinators, blood tests for me and Mom and having to find an apartment for when we go back Dec 1 to stay.

Aside from information overload, having to find an apartment within a few days, and notwithstanding the circumstance…..I am really glad I got to take this road trip with Susana and Mom – we also took a side trip to Washington DC.

Me and my whole family will be going back to Baltimore on Dec 1. My brother Patrick will be traveling back and forth between HK and Baltimore during the whole month of Dec, and my Mom and I will be staying there for 3 months.

The goal now is to have a Non-myeloablative Haplo-transplant before the Holidays – this is a transplant of Patrick’s stem cells since we did not find an unrelated donor match and Patrick is a confirmed 50% match.

Johns Hopkins has been doing this since 2003, and the chances of developing severe Graft-vs-Host-Disease is around 6% and the survival rate is 85%, although with my age I was told the odds are even better.

The flip side of this protocol is that the relapse rate is higher than traditional Myeloablative haplo-transplant.  However, they say as long as I don’t completely clash with Pat’s cells, we can do a Donor Lymphocyte Infusion (DLI) which is sort of a mini transplant if I relapsed and they have proven results that this subsequent infusion will get the job done

Although we didn’t end up finding a match for me, I still feel really lucky and blessed to have received the amount of support I did, and to have made a lot of new friends along the way.  I hope what we accomplished this past Summer is only the beginning, that you will join me and many others in continuing to spread the word about the dire need for new marrow donors within all ethnic communities, and I hope all our efforts will become that much needed silver lining for other leukemia patients in the future.

TOGETHER, WE CAN DO IT.

Click here for your local Registry’s link.

I will have internet access at the apartment in Baltimore, so do feel free to drop me a line via email, Facebook or this website, and I will post updates whenever possible.

Thank you all, and don’t worry, because I’m confident I will be home before you know it!

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17 Responses

  1. Glad to hear that you have a treatment plan that you and your family are comfortable with. Stay strong Carolyn!

    Van

  2. Best of luck! Laura also had a haplo transplant with her brother as her donor, although not quite the same procedure as yours. She is now 175 days post transplant. Keep up your spirits, and keep fighting … you can do this!!!

  3. I’ll always be here for you 🙂 I am very positive about this whole thing.

  4. stay strong Carolyn!

  5. me too Carolyn, I’ll always be here. All I want for Christmas is for you to get better and I know this treatment will make that happen!!! = )

  6. Best of luck to you… go down there and kick some @$$! We’re all rooting for you up here 🙂

  7. Bless you Carolyn. I’m sure you are going to have a merry Christmas and we’ll pray for more good news to come.

  8. am so glad that things are looking good for you. Hope you get well SOON. keep us posted and let us know if you need anything.

  9. I JUMP UP FOR JOY to read the news in both Ming Pao and Sing Tao today that you are going to Baltimore for the transplant and the successful rate there is so high. Although I don’t know you at all, I am very touched the way your mom and family and friends support you.
    I wish you a super speedy recovery.
    You look so great in the newspaper.
    Miracles always happen and it will definitely happen to you.

  10. Good luck! Will be thinking of you. And you’re right, you’ll be home in no time!

  11. I will (and am) be praying for you Carolyn, all the best and will keep in touch via email!

  12. Dearest Carolyn-

    We have been following your courageous and inspiring battle with AML for several months, and have been heartbroken that you have not been able to find your match yet. But we too are very encouraged that you have found a great hospital in Johns Hopkins to have your haplo-BMT from your brother. As you probably figured out from his website, our little Jonah (now 15-months-old and one-year post-BMT for HLH) also went through a non-myeloablative BMT and one subsequent DLI. So far he is doing great but not completely out of the woods yet.

    It is clear to all that have followed your journey that you and your family and friends have and continue to make a much needed and incredible impact on behalf of Chinese and all patients like you and Jonah who need BM donors.

    We will continue to pray for the complete success of your treatments!

    Love,
    Nat, Jeannie, Ethan & Jonah Chuang

  13. Good luck Carolyn, it would be the gift for this Christmas. Stay strong and bless you all the way.

  14. Carolyn,
    All the best to you and Pat for your transplant in Baltimore! Hopefully, come Christmas time, you and your family will be able to enjoy a happy and healthy holiday together 🙂

  15. warm wishes to you and Pat!! I will keep you in prayer!

  16. Good luck and may God bless you and your family. Keep up with your faith in God!!!

  17. Thank you for keeping us posted about your progress, Carolyn. We all should learn from your incredible strength and support from your family.

    Best of luck with the transplant in Baltimore.

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