Save Her Life

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nirali3.jpg

That precious, happy little girl you see above is Nirali. She has Acute Lymphoblastic Leukemia (Thanks, bean). According to the following,

Despite overall improvements in outcome, the prognosis for patients…is poor. Their estimated event-free survival (EFS) is only about 30%. [link]

her life is very much at stake, so the way I titled this post isn’t sensational or an exaggeration of any kind. After losing an Uncle to Leukemia two years ago and having an even closer family member go to the hospital this week because of the looming possibility of cancer, Nirali’s story makes me want to weep.

She needs a bone marrow transplant.

She needs that transplant from someone who is brown.

There aren’t anywhere near enough desis in the National Marrow Program database.

We have no excuse for this.

I am terrified of needles, I’ve said this many times. I avoid flu shots, because I find them so traumatic, but even I sacked up and then felt like the biggest baby for being afraid of the “typing” process which put me in the database of potential donors. Apparently, they’ve even taken care of THAT obstacle; now you can just get your cheek swabbed and that is enough.

Look here for a desi-centric list of opportunities to join the database, nationwide. Go. Give a tiny part of your physical self. And then pray, if you are inclined to do so, that we follow-up this post with some joyful news.

68 thoughts on “Save Her Life”

  1. the veb-site i just visited sed that the anesthetic can be local or spinal. i am really uncomfortable with needles being stuck in my spine – so can you tell me what is the decision process around the location of the anesthetic. also, what are the common locations for pulling the marrow?

    mr. hairy: usually the decision between spinal vs general is up to the patient themselves.. the anesthesiologsit usually explains the side effects of each procedure in detail… if you want to remain alert but sans pain, spinal is usually best (given to women during childbirth), it isn’t that uncomfortable although sounds dreadful..general might not be an option for some people depending on co-morbidities (other medical issues, etc)

    common location is the pelvic bone which has around around 40% of the bone marrow in the entire body..

  2. chick pea, i’m very grateful that you are here to answer everyone’s questions so patiently and thoroughly. thank you. 🙂

  3. chick pea, i’m very grateful that you are here to answer everyone’s questions so patiently and thoroughly. thank you. 🙂

    no thank you for posting it as an SM entry…

    education is light for everyone.. myself included… it truly is a priveledge to help anyone out… glad it is of some use.. (and excuse the misspellings.. have never been a speller and never will be.. sometimes i type and think faster than i can spell.. ;))..

  5. Razib, you big shoftie. 🙂 I heart you.

    Your suggestion is an excellent one– one of you HAS to be related to or, more likely, in a position to guilt-trip Anil or similarly massively-read blog stars. 😉 Seriously, this is such a good cause. Work it! And whether you are a higher being or an (in)significant microbe, BLOG THIS CAUSE. All it takes is one person to match– that one person could be one of your five readers or one of Instapundit’s millions. Some of you haven’t posted in weeks (no pressure!)– welcome back, now get to it. 😀

  7. general might not be an option for some people depending on co-morbidities (other medical issues, etc)

    thanks for the info dear choolley.

    whoa! you said general anesthesia… not local?

    hmm.. much as i dislike the idea of a spinal … i keep thikning some guy’s going to sneeze and i’ll never walk again… the general is even less appealing. got to think about it.

  8. whoa! you said general anesthesia… not local?

    oh mr. d who lives in the land that has mangoosteens ;):

    could be local/general/spinal… depends.. and the anesthesia persona will let yhou know the pros/cons.. i don’t know it offhand.. not my curry specialty…spinal anesthesia is pretty safe.. likley safer than driving a car down the highway esp in traffic congested TO (what is up with that?), now back to the generally scheduled programming of bone marrow transplants…and saving lives!

  9. also, as a side node, here is a link to an EXCELLENT documentary: A Lion In The House that i somehow (and fortunately) came across while flipping channels back in june on PBS.. it was filmed over 6 years at Cincinnati’s Children Hospital… it follows a children with leukemia to hodgkins disease and other pediatric cases…here is a brief description:

    A LION IN THE HOUSE follows the stories of five exceptional children and their families as they battle pediatric cancer. From the trauma of diagnosis to the physical toll of treatment, this series documents the stresses that can tear a family apart as well as the courage of children facing the possibility of death with honesty, dignity and humor. As the film compresses six years into one narrative, it puts viewers in the shoes of parents, physicians, nurses, siblings, grandparents and social workers who struggle to defeat an indiscriminate and predatory disease.

    it is the most honest piece about childhood cancers that i have ever seen, it is frightfully similar to what i see on a daily basis.. i could not stop tears from flowing…and i can bet most of you will also not have a dry eye… also, on the brownfront, an indian oncologist, Dr. Vinod V. Balasa, who took care of tim woods (one of the patients who unfortunately succumbed to the disease)…

    if you have a chance to see it, i urge you to do so… it will bring a lot of insight into the ‘big picture’ of the horrific, ugly, big C–the emotional toll on the patient (when a 14 year old says on camera, he has to drink to numb himself and to forget that he is dying…) to the impact it can have on a family…to financial woes… and other social concerns that arise… the website itself has a lot of information and useful links to those who are interested..

    also, please understand/and remember that adults with cancers have similar emotional tolls that they and their families have to deal with…sometimes we are more emotinally entwined with pediatric cases, however have to remember that people our own age to as old as 101 (yes i had a patient that old) suffer as well..

    you can also see what you can do to change a lot of the suffering by a prick of a needle and registering into the bone marrow registry… i strongly urge those who are physically able–to register… you really can make a difference…

  12. Hi, I am so glad you are bringing attention to such an important matter and i really hope you can find a match for her. I saw a request on Zee Tv and thought i google to see if more is being done. Have thought about people going to different churches, temples, gurudawara to raise awarness. Good luck, Rupy

  13. Just got back from the drive at the temple in Edison, NJ. Happy to report that despite less than pleasant weather, they were enjoying what appeared to be a significant turnout. I was told that while the turnaround process is normally 12 weeks, they were able to make an exception for Nirali and expedite it to 8.

    Again, thank you so much for calling attention to this. Even I’m not able to help Nirali directly, I’m glad to have been made aware of the opportunity to potentially help someone else equally in need.

  14. As if last night’s meetup wasn’t enough of a gift from this website…now your comment fills me with a grateful sort of delight. Thank you. It’s amazing and fulfilling to learn that a mutineer did something so important, after something as disposable as a post from us. Go you! I love your update! 🙂

  15. Here is an update on Nirali:

    While Nirali has not found a bone marrow match from a donor, she has a cord blood match. Cord blood is donated by willing parents at time of child birth. It usually has enough cell dose to use for transplant in little children. Nirali has found such a cord blood which has been put on hold for her. More information on cord blood donation: http://www.marrow.org/DONOR/Donation_Transplant_Process/The_Donation_Procedure/CB_Donation/index.html We don’t have words to express our gratitude toward our family, friends and so many volunteers who helped us in organizing bone marrow drives across the country and even at some international locations. And special thanks to all of you who have registered to be potential bone marrow donors. You have given hope to many many patients like Nirali. Thank you so much…We are touched that so many of you are worried about her and ask about her health. We will try our best to keep the site updated. Thank you all for your support and prayers.

    She is currently at Duke undergoing the prelim tests before her transplant on Xmas eve.

    Cord blood is another option. For those having children in the future, it’s something to consider donating, and getting more information on. It saves lives… it really does.

    Happy Holidays to all.

  16. Just wanted to provide an update – very sadly, Nirali passed away this past weekend (4/27). The site has details, but briefly, although the cord blood seemed to “take” she developed complications and her body couldn’t handle it.

  17. A new cancer centre is opened in the name Nirali, a good amount of Money was donated by her Grand father, I am doubtful if high quality new designed and new equipment were really purchased for this centre. hope every body who donated knows about it.