Forward motion

by Julie
Published on: January 10, 2012
Comments: 1 Comment

Remember how I promised to post here about a person you could send your donations to?  Well, our friend Beth, whom we thought might need help, is doing fine – hooray!!  She may not need a bone marrow transplant after all, so she said she doesn’t need the donations right now.  But I met someone yesterday who does.

Yesterday, for the very first time, a parent introduced herself to me in the chemo infusion pod.  I was so happy to be approached by someone!  It turns out that Erica had seen Phenon sitting comfortably bald in her chemo chair.  Her daughter, Amani, had just started chemo, and she wanted to know what to do to help Amani respond to hair loss like Phenon.  1) Could she make it fun?  2) Should they pre-emptively shave her head when her hair starts to fall out?  I answered her questions: 1) nope.  2) maybe?  As we talked, I was really charmed by Erica.  She was a psychology student before this started, and she wanted to become a counselor to work with foster kids with attachment issues.  She is a preschool teacher, and has had numerous foster kids in her classroom, and she wanted to be able to better help them.  I really appreciated Erica’s warmth, and her willingness to cry a little bit as she talked about what was happening.  Other parents there don’t cry.  I’ve never seen a single other parent on the unit even tear up a little.  I tear up sometimes.  I liked that Erica made me feel a little bit normal.

I was also charmed by Amani.  She made me guess her age (7), and she spent her four hours in the pod making crafts with pipe cleaners and chatting with the nurses.  You know I like a girl who needs to keep her hands busy! Amani gave all the nurses hugs good-bye. Amani is getting chemo now, but she doesn’t have cancer.  She has sickle cell disease.  When she was diagnosed as an infant, her father left immediately and has never come back.  Erica has been raising her two daughters (15 year old and Amani) alone throughout this process.  Amani’s sickle cell disease has been progressive, and has started to kill her.  She has already had two strokes, despite monthly blood transfusions.  Amani now requires chemo to try to slow down the disease course so she can make it to a bone marrow transplant.  A bone marrow transplant is extraordinarily dangerous, with a very high risk for complications.  Erica is going to have to take six months off of work to take care of Amani – at first to live in the hospital with her while she is in isolation (45 days, minimum), and then at home where she will also be in isolation.  Six months is the best case scenario.

Erica never mentioned fundraising to me.  She was looking for support and ideas.  But when she talked about six months off of work as a preschool teacher and I thought about her single parent status, I asked if she had done any fundraisers yet.  Amani cheerfully jumped out of her chair and handed me a flyer.  They are having a concert to raise money on March 18.  But I thought maybe we could use this website to help her out before that.

I have had a number of people write to me that they had been planning to send us money, but we met the goal before they got to do it.  Could you send Amani’s family $10?  Or $20?  A full third of the donations we received were from strangers, most of whom sent us $10 or $20.  I sent in a little of our overage to Amani’s mom last night.  Even if you can’t send in ANY money to them at all, could you post a link to her site on facebook and ask your friends to donate $10 or $20 or more?  Tweet about it?  That’s the main way that we raised money – the power of social media and friends passing on word to friends was amazing.  When you go to donate money, there’s a comment field under Amani’s name.  It would be really cool if you’d put Phenon’s name in there, so Erica knows how y’all found her and why you’re helping out.  This little girl is in for a hell of a fight, and she’s been dealt an extra crappy hand.  I would love to pay forward our sense that good strangers will step up when you’re in dire straits.  Thank you, so much for any help you can send.

1 Comment
  1. Victoria Nelson says:

    I would love to help her! Im posting it on Facebook too so everyone I know can help

Comments are closed.

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