We just received the news that shobhinis bone marrow results from last Wednesday at Phoenix revealed no evidence of leukemia cells even by the most sophisticated analysis possible. So that is great news!
Now we will have to make a difficult decision regarding her ongoing treatment, whether to go through with a bone marrow transplant or not. It is a very aggressive and toxic treatment because the preparation involves high dose radiation to kill off her entire bone marrow cells and then inject her with the bone marrow cells from the donor. She may not survive the preparatory regimen and the risk of death is at least 5%, may be as high as 10-15%.
The survival for the subtype of leukemia she has is 20-30% at 5 yrs with the standard treatment and 50-60% is the 5 yr survival of patients with bone marrow transplant, but we are currently asking if there is anything other than transplant that may work. Unfortunately even Chemotherapy has a risk of up to 2% mortality with each round.
I think we should probably take her on at least a mini-vacation while she is doing well and the team feels we should begin treating her with chemotherapy while we decide about transplant. There are already several very good matches that have been identified.
So now we are interested in hearing about alternate therapies and people who have benefited from alternate therapies. Email me ! shanmathis@yahoo.com
Tuesday, September 3, 2013
Thursday, August 22, 2013
All I ask for is your spit !
Hi. This is my daughter- Shobhini Manikarnika Kumar. We call her Manu. She is seven years old. She loves dancing, swimming, travel and Saravana Bhavan Sandwiches.'. She is a hardworking student who loves her math and hates her Hindi lessons. She adores children and harbours dreams of working in fashion when she grows up.
IF she grows up.
We urgently need your help and generosity to support Manu's fight to beat the odds.
On April 29, 2013, Manu was diagnosed with Acute lymphoblastic leukemia. After a month of traumatic chemotherapy, we got a more alarming diagnosis- Manu has ETP- ALL, a rare , hard to treat leukemia. She is currently in Tucson, Arizona, bravely enduring her daily chemo and blood thinner shots and receiving weekly transfusions.
A stem cell transplant is necessary, and it is hard to find matches for Indian HLA Types, because Indians have so many unique subtypes .
We are looking for a Bone marrow or umbilical cordblood donation. The USA has FREE registries that test type and receive bone marrow and cord blood donations.
Just as blood is matched by blood group, Stem cells are matched using HLA typing.
BONE MARROW needs minimum 10 HLAs to match.
CORD BLOOD needs 6/6 match, that is, the major six HLAs have to match.
SAVE MY CHILD's LIFE.
If you are of South Indian descent and live in any part of USA or Europe, You can perhaps help save my kid's life at little or no cost to you.
If you are in India and would still like to help, please get in touch with me at kasthuris@gmail.com .
HOW YOU CAN HELP
BONE MARROW DONATION :
Indian bone marrow matches are not readily available. Even less so when it comes to the south Indian Subtype.If you are an ADULT, please register immediately as a bone marrow donor- You can register online at http://bethematch.org/Join/Join_the_Registry.aspx .
The website gives you several options to get your HLA typed- usually from a cheek swab of your saliva- like attending a registry drive, going to a nearby recruitment center, or receiving a homekit.
PLEASE REGISTER ASAP. The process is painless, non intrusive, and free.
UMBILICAL CORD BLOOD DONATION :
If you are an EXPECTANT PARENT in your third trimester , Please consider donating your child's umbilical cord blood. The process is COMPLETELY NON INTRUSIVE as the blood is collected from the discarded waste after birth. Registering and testing to donate must be completed between weeks 28 and 34 of pregnancy. Donation is free, and is a great idea since private banking costs several hundreds of dollars. Donating your child's cord blood makes it potentially available to even your own use for free if the need arises.You can get all the details at http://bethematch.org/Get_Involved/Donate_Cord_Blood/How_to_Donate/How_to_Donate.aspx
Once you register, the collection can be done at whichever hospital you are giving birth. Here is a list of participating hospitals where you can register, get more information and ask for homekits-
FINANCIAL CONTRIBUTIONS :
In India, HLA typing is an expensive process. Moreover, Indian HLA types are so diverse that one may need to test several hundreds of people in order to find one match.The cost of conducting bone marrow registration drives routinely runs into lakhs. The registries also charge hefty fees- running into several lakhs- for delivering the bone marrow units. So even though donors volunteer their bone marrow for free, patients still end up with huge bills, usually impossible by Indian standards. This is the reason most transplants in India are done only when a sibling match is available.
In order to aid financially disadvantaged pediatric patients who need a transplant , the MANU MEDICAL CORPUS has been instituted. The corpus is dependant on your charitable contributions . We are in the process of securing 80G and 501 exemptions.
Please contact me at kasthuris@gmail.com with any questions you may have, or to update me of your kindness.
PLEASE FORWARD THIS APPEAL to all your contacts, especially pregnant ones !
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