Make Me Stronger

A call to action. A cry for help. An opportunity for you to realize your power to give strength to someone affected by a blood cancer (Leukemia, Lymphoma, and Myeloma). Get involved. Make someone stronger.

Helpless, but Hopeful…

Karthik and Divya II
(Story shared by Divya Mohan from Chennai, India)

My husband Karthik was diagnosed with Early T Cell ALL in 2011 when he was 33 years old – we had been married for a little over a year and our lives changed overnight. I still remember that Friday morning when I was at work and got a call from him saying he was at the doctor as he wasn’t feeling well and had just been told that he had a huge tumor in his chest. All he told me was that the doctor had told him that they needed more scans to determine what it was. That weekend we moved from Mumbai to Chennai (where we are from) and the following Monday, he started Chemotherapy. He underwent aggressive Chemotherapy in 2011 and was on maintenance chemotherapy by the end of that year.

We thought we had put it behind us when we crossed the 2-year mark and he was still cancer-free.. Our excitement was short-lived.

Earlier this year, a persistent low grade fever and an ankle injury that refused to heal were the first signs that things were not really going to plan. His doctor decided to do a Bone Marrow Aspiration and we found out the next day that he had relapsed. We knew that his only option was to find an Matched Unrelated Donor (MUD) as his parents and sister are not a match.

We have since been contacting as many people as we can to spread the word for people to become donors as this is the only way Karthik, and others like him can hope to have a chance to survive their cancer. So far, given the abysmally low number of Indians on registries world-wide, we have not found a match for Karthik. We spend most of our time combing through emails from potential donors and friends trying to explain the process, to dispel any fear people may have about becoming donors and trying to organize drives. Given the lack of information on the process and the disease, a surprising number of people have come forward to become donors - Over 400 people in the first week!

We hope that in a few months, we can help build up the registry in India (DATRI: http://datriworld.org/) by at least a few thousand and then hopefully garner enough attention to get some serious numbers going – this is the only way to ensure that we give all these patients a real chance at life. We continue our periodic searches for Karthik and we hope to hit the jackpot some day – a committed, perfectly-matched (HLA) donor!

Karthik’s odds of surviving until his 37th birthday are between 15 – 30% without a matched donor so please help us by becoming a donor as well as by spreading the word among friends, family, co-workers and any other groups you think will be able to help save him and people like him.

For more details on how you can help Karthik, please do visit the following pages:

http://www.swab4karthik.com/

https://www.facebook.com/swab4karthikswab 4 karthik

23 comments on “Helpless, but Hopeful…

  1. deepak
    December 26, 2013

    hi divya garu praying god for your husband problem wishing for a speedy match may u consult Dr.R.varadarajan centre for blood disorders in chennai known for his expertise and contacts in bonemarrow thetrapies well i have a sister who is suffering from thalassamie since her 3rd month transfusing blood for every 20 days now in this august daddy arranged money for her operation but we are unable to find out match in our family &relatives nearly 3.5 lakh was s[pent for matching purpose HLAtyping test but we didnt found exact match my father was uneducated &he was hopeless now now we want to contact datri for her match can u please help with their details & if u can(please)call me @8897289698 as i didnt have any computer access

  2. rekha setty
    April 24, 2013

    divya want to help u . please met me know how. rekha aunty and rajoo uncle

    • divyamohan1
      April 24, 2013

      Hi Rekha Akka! Thank you for reaching out to us! Apart from age, there is not other criteria that matters so if you fall within the age group of 18 – 55 years, please do become a part of Datri’s Registry in India. You can order the kit to provide a donor sample from Datri through their website: http://register.datriworld.org/Aspx1/NewDonorKit.aspx.

      This is the first step in checking if you are a match for Karthik.

      To ensure that you take the sample correctly, please do have a look at this instructional video on taking the sample: http://www.youtube.com/watch?v=5znYaAwKj5o&feature=youtube_gdata_player

      Payment to test your donor sample (INR2,500) will have to be made via a Cheque to Datri (details on whom to make the cheque out to are part of the kit) when you send the kit back to them to test your sample. This covers their courier cost to send your sample to the US for testing.

      Getting on the Registry will help not just Karthik, but other people in situations like his who are looking for a matched unrelated donor… Thanks a ton Akka! Please also help us spread the word.

  3. Kiran
    April 20, 2013

    Divya, have you spread the word amongst all IIMs in India, Karthik’s college, respective almumni and networks associated with alumni. I will spread the word here in USA. Has there been a drive in Karthik’s hometown?

    • divyamohan1
      April 20, 2013

      Hi Kiran, We have actually done all of the above.. Unfortunately we haven’t been able to find an Adult Stem Cell match. He does however have a couple of possible cord blood matches so we’re still looking.. Please do help us spread the word though. Many thanks!

  4. Meeta
    April 19, 2013

    Hi Divya.. Sorry to hear about Karthik. Could you please tell me how i can contact you? i want to know more details and see how i can help… Hope to hear from you…

    Meeta !

  5. Vijayalalshmi
    April 18, 2013

    Hi please let me know what i have to do to be a potential donor? I am frim bangalore and live very close to the ttk blood bank.
    Heart felt wishes for a speedy donor match and an even speedier recovery.

    Viji

    • divyamohan1
      April 19, 2013

      Hi Viji,

      Thank you for reaching out to us! If you are unable to order the kit from Datri, may I request you to call them at 044-4553 5060 and check with them on how you can go about getting a kit? Please let me know if you are still unable to get through to them.

      More information to help you give them a viable sample:

      To ensure that you take the sample correctly, please do have a look at this instructional video on taking the sample: http://www.youtube.com/watch?v=5znYaAwKj5o&feature=youtube_gdata_player

      Payment to test your donor sample (INR2,500) will have to be made via a Cheque to Datri (details on whom to make the cheque out to are part of the kit) when you send the kit back to them to test your sample. This covers their courier cost to send your sample to the US for testing.

      Apart from age, there is not other criteria that matters so if you fall within the age group of 18 – 55 years, please do become a part of Datri’s Registry in India. This will help not just Karthik, but other people in situations like his.

      Thank you so much for your help! We are counting on support like yours to help find a suitable donor for Karthik.

      Regards,
      Divya

  6. Alex
    April 18, 2013

    great initiative…wont it make sense to join with raghu rajagopal’s initiative to build on that database further rather than start from scratch…just a thought..

    • divyamohan1
      April 19, 2013

      Datri is Raghu’s Non profit that maintains the database in India :)

  7. Shardha Prasad
    April 18, 2013

    Hi want to know if this is blood group specific for Karthik

    • divyamohan1
      April 19, 2013

      Hi Shardha,

      A stem cell transplant does not require the donor and the patient to have the same blood group.

  8. M.S. Ramakrishnan
    April 18, 2013

    Is there a way we can communicate through email and discuss yours and your husband’s situation in greater detail? Kindly oblige.

  9. surendar
    April 18, 2013

    Dear Mrs. Kathie
    We sure that GOD will help karthik to be back like old self ,…..like karthik I know of from Delhi playing around with his grandmother and Ramesh .
    I will look around for a center at Kuwait to take a swab test .
    WE pray for Karthik that he should be back VERY SOON like a Delhi boy , playing around at IIT gate

    Surendar
    (Mr. Ramesh‘s old friend

    • divyamohan1
      April 19, 2013

      Thank you Mr. Surendar. I will let Karthik know too.

  10. Vishal Ahuja
    April 17, 2013

    Please contact international registries. I am a registered donor at BeTheMatch.org

    • divyamohan1
      April 19, 2013

      Thanks Vishal – we have. The process of finding the donor does involve looking at international registries and donors :)

  11. renuka
    April 17, 2013

    Hi…http://www.bmdp.org/about_contact.php .this issingapore donor site.Can you contact these person.there are chances you get match..please give try

    • divyamohan1
      April 17, 2013

      Hi Renuka – Thanks – the search for a donor automatically looks into all international registries that are linked to the NMDP and BMDW (like BMDP) to look for matches..

  12. Ashka
    April 16, 2013

    I think it’s great that you are forming a registry in India. But for your husband, can you use the international registries to see if he has a match there? Those registries are fairly large.

    • divyamohan1
      April 16, 2013

      Hi Ashka, we are looking for matches on all the major registries. DATRI is a registry in India that is operated by Raghu Rajagopal in Chennai and it is the largest registry in India with about 31,000 donors – still very small by any standard.

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