New Year. New Home. New Hope.

New Year.

The original plan was for my Uncle Lawrence from Vancouver to spend a month in Baltimore to help Mom out before and after the transplant.  When things fell through and we had to return to Toronto, my dear Uncle insisted on spending the month in Toronto anyway to help out and spend Christmas and New Year’s with Mom and I.

It may be mundane at times – three adults with no particular daily schedule except to Princess Margaret Hospital for check ups every other day, but it was sweet and it was precious family time that I’ll always be able to look back at to marvel over the love they have for me. 

We had people over for Chinese hot-pot on Christmas night, and the three of us rung in 2009 with Maria and Tony (West Side Story) on TV.

In the first week of the New Year (a week or so before Uncle Lawrence’s scheduled return to Vancouver), there was still no concrete next step on the horizon – we were waiting for OHIP’s response to our re-application for funding a different procedure at a different hospital in the States.  Assuming that it would take more than a few weeks to hear back from OHIP, and with Chinese New Year around the corner on Jan 26th, we started wondering:  Is it realistic for Mom and I to fly to Vancouver to ring in the Year of the Ox?

New Home.

Very few hospitals in North America offer Haplo-transplant for patients in remission, and even fewer would do it for someone who is not.  Fred Hutchison in Seattle is one of the few who has a protocol for not-in-remission Haplo-transplant, but their program can only take a couple of patients at a time and could not take me right away.  City of Hope in L.A. is the other possible treatment centre, but my blast cells are up to 40% and are now in the peripheral blood, so there is a chance that I may not be eligible for the protocol.  There were a lot of unknowns.  It seemed that it would be mostly waiting for answers in the immediate months, and should I get lucky with either hospital, they are both out West anyway.

So we started wondering again:  If  Mom and I were to just go for regular check ups twice a week while we waited for “The Plan” to materialize, can we do that in Vancouver with family and relatives around to help out?

On Monday Jan 5, 2009, I shared our thoughts about Vancouver with my Hematologist.  By the following Monday, with the help of Uncle Lawrence, we packed up my entire apartment for storage.  And by Tuesday Jan 13, the three of us were on the plane West bound.

The day after our arrival I made my first visit to the Hemotology Daycare Unit at Vancouver General Hospital who was monitoring my blood levels and physical condition thewhile we waited in Vancouver.  Unfortunately for me, I soon developed a fever due to an infection at my Hickman line site, so the line was removed right away and I spent everyday of the first two weeks in Vancouver between the hospital for anti-biotics and home in bed.

On Jan 26th, with the help of a combination of painkillers and the strength of the Ox, I made it out to Chinese New Year/ my dear friend Susana’s B-day dinner with a huge smile and a bigger appetite!

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New Hope.

When we left Toronto on Jan 13,  I left believing that being closer to family and relatives both physically and mentally were what Mom and I really needed, in order to continue down this in this uncertain journey.  Even though I did not know when or whether things will turn out for the better or worse, I trusted that whatever is supposed to happen will happen.

On Wednesday Jan 28th, I went to my new Hematologist at VGH for a post-infection check up.  Afterwards, he told me that VGH has had considerable success with mismatched cord blood transplant.  ‘Mismatched’ means the donor’s stem cells does not match all of the recipient’s antigens, which you have to match 6 for cord blood transplant and 10 for unrelated donor transplant.

Then completely unexpectedly, he told me that they have identified a couple of 4 out of 6 antigen-matched cord blood units for me!!!!  Although first I have to go through a round of chemo to try and put my leukemia back in remission, and if all goes well, then we hope to proceed with a transplant this Spring!

Cord blood transplant, like haplo transplant, is relatively new compared to unrelated donor matched transplant.  There are certainly different opinions about about their long term success rate.  But I right now, I am starting to feel like there may be hope again (which trust me was hard to dig up after coming home from Johns Hopkins).  Not to mention of all places, Vancouver is The Ideal location I want to have the transplant being closer to family and relatives.

It’s been a week since I’ve been at the hospital for my re-induction chemo, and is expected to stay approximately 1 month.  Hopefully, it will successfully bring me into remission, so that I will be eligible for transplant in the Spring!

Miss you Toronto!

And thanks for taking me in Vancouver!

 

 

Click here for your local Registry’s link and REGISTER TODAY to help Carolyn and Others.

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15 Responses

  1. Go Carolyn!!

    I was going to call you this weekend, so I am glad you posted this update!

    Talk about a silver lining. Thanks for keeping every in the know and all the best to you!

  2. Carolyn, all the best of luck with this new procedure. I know what your family is going through, since my daughter had a haplo transplant last May. Keep up your faith, and I am happy to see you surrounded by family … it is so important to have family close by. Hugs and best wishes for a safe and successful journey back to health!

  3. Hooray!!! I’m glad you posted at update and I’m happy to hear things are falling into place. Be gone leukemia. You’ll be done with all of this before you know it. You and I can be examples of cord blood transplant successes!!!!

  4. Thanks for the update Carolyn. As we used to say to Graham, “you are taking the senic route to transplant!” 🙂 All the best with the chemo. I hope it does the trick.

    I wanted to also let you know that the drug that finally got Graham into a CR3 prior to transplant was clofarabine as part of the CLAG protocol. It was on clinical trial at the Hutch but a friend here in Melbourne in the same situation as yourself (and Graham) told her Docs about Graham’s success with clofarabine and even though it isn’t on the pharmaceutical benefits scheme for Australia, they were able to access it through a grant and she started receiving it on Thurs with the hope to head to a CBT at a newly opened program in Adelaide.

    All the best.

    Sam xx

  5. He is great thanks Carolyn. Still fatigued and a bit stiff in the joints (perhaps some chronic GVHD) but this is the longest he has been out of hospital since getting back to Melbourne and his 6 month chimerisms still show 100% donor so that was wonderful news. And the kids are so happy to be back home and with their friends at school. Feels like we have done it! And you can too. We are thinking of you and wihing you all the best.

    Sam xx

  6. Miss you lots here in Toronto too Car!! Glad you finally got a bed and I hope the next couple of weeks or so fly by. I bet you’re keeping all the docs and nurses in their place! lol
    And I will be thinking of you lots as always!!! = )

    xo
    Chris

  7. Hey Carolyn,

    Keep it up! I will continue to pray for you 🙂

    Jodie

  8. Great to hear and thanks for the update. Good luck with everything! My thoughts are with you and your family!

  9. Carolyn, I am so happy to hear your good news. I shall pass this to Mom. Please say hi to your Mom from us.

    May God continue to bless you and watch over you.

  10. Best of luck! May your everydays be filled with hope & sunshine!

  11. Dear Carolyn,

    I hope all things are turning fine. Tho I dont know you personally, but through the email from your brother, I will continue to pray for you.
    Tust that GOD will watch over us , as long as we have our trust and faith in HIM, HE will take care of the rest.

    Hope that you and your family will live every moments in love and happiness.

    Best,
    Cherry

  12. Hi Carolyn,

    I hope you are doing fine.

    Your fight against the challenge you are facing has waken up many Asians, especially the Chinese. When more Chinese sign up with the stem cell registry, there will be more lives saved. It is not just a dream. It is something the new generation understands and will do. The Chinese government has much to do in educating her population doing just that.

    Many future patients will appreciate your family’s, your friends’ and your effort in getting more people on the stem cell registry. Your fight inspires many others to continue with your work.

    You remain in my prayers.

    Peter Siu
    Vancouver, BC.

  13. Rest in peace, Carolyn. May Lord be with you and your family.

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