Our Fellow Travelers

One of the the silver linings of having a child with cancer is the wonderful people you meet along the way who are on — or have been on — the same journey crappy little boat trip.

We’ve met Destiny — the 12-year-old girl we shared a room with one of the times Clio was inpatient – who made her way successfully through a harrowing bone marrow transplant after relapse (her twin brother was the donor) and who seems to be doing well. Her mother is an incredibly strong and determined woman with immense faith that has helped her get through the ordeal.

Through the Jimmy Fund Clinic, we’ve met Bennett and his awesome family — Bennett is the silly superstar in Alastair’s “When I get Bald” video, and both he and his sister Lily sing on Alastair’s album.

We’ve met Ari and his parents. His mom, JulieSue, also a blogger, is even more sarcastic than me, and I love when I see her name in my inbox.

We’ve also met Maddy and her parents, from my hometown in Connecticut, through my aunt, who goes to the same church as them. (Maddy is the teenage girl in the video rocking the bald head.)

And there are lots of others we’ve met, too — through the clinic, at Camp Sunshine, at various events, through friends, and friends of friends.

And then there are the people I’ve never met in person, only on Twitter or Facebook, or through their blogs. Even though I’ve never so much as shaken their hands, I treasure knowing them, because it makes me feel less alone, and because I want to help them feel the same way.

There is so much we share and implicitly understand, even though we know so little about each other. I’m sure you know exactly the feeling — the relief and comfort of connecting with people who get it. Whether that “it” is a health issue or career choice or background or values 0r even just a sense of humor — whatever the thread is that ties you together.

One of those people is Phyllis Sommer, whose blog I’ve followed for the past year and a half. Her son Sam, who just turned eight, has leukemia — AML, specifically, which is usually harder to cure than ALL, which Clio has. Phyllis writes beautifully and funnily (is that a word? Spellcheck seems to think so…) about her family’s journey, and “Superman” Sam’s incredible patience, pluck and resilience throughout it all.

They’ve had a really tough road. Sam relapsed shortly after he completed his treatment (the protocol for AML is quite different from ALL; 6 months of intensive chemo and then you’re done), and they weren’t able to get him into full remission in preparation for the next step, bone marrow transplant. Still, the transplant seemed to go well, and he made it into remission.

But only for a few weeks. The leukemia is back. And there’s nothing more they can do.

Nothing more they can do.

Imagine hearing those words being spoken in reference to your child — your baby, your very heart. Imagine after nearly two years of grueling treatments and long hospital stays and pain and hope, being told that your child is going to die. Imagine having to tell his siblings. Imagine having to tell him.

My heart is heavy for Phyllis, for her husband, for her other children, and for Sam, of course. No kid should have to be told that he’s going to die. No kid should have to fear that.

And see, this is one of the worst parts of connecting with other people on the same boat trip as you: Knowing that some of them are going to face the worst possible kind of grief — the outcome that’s on the minds of every cancer parent on some level, in some deep recess of our consciousness, every single day.

And knowing there’s nothing you can do to stop that outcome when your fellow travelers face it, and nothing you can do to ease their pain besides send love and prayers — which seems so piddling and impotent.

But that’s what I’m doing. I think about Phyllis and her family every single day. Even though it brings me to the brink of tears at times, and even though it forces me to confront my own worst fears. But I hope that somehow, maybe, it helps just the tiniest, infinitesimally small bit.  It’s wonderful to see so many people doing the same — and wonderful to see that she has a large and incredibly supportive community of friends, family and members of the congregation where she’s a rabbi.

Phyllis continues to write about what’s happening, and her writing continues to be beautiful and searing and a testament to her strength and grace. I suspect that writing brings her a lot of comfort, too.

Meanwhile, their whole family is about on a trip to Israel — one of Sam’s many wishes that his family and friends are trying to fulfill for him over the coming weeks (and hopefully months).

Here’s to a safe, fulfilling and uplifting detour from the crappiest boat trip of all.


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20 Responses to “Our Fellow Travelers”

  1. Gallaudet says:

    I will join you in thinking about Phyllis and her family every single day. Not to flinch away from it seems like all I can do from here. So what I can do, I will.

    Godspeed to her and her beautiful boy.

  2. Lynn Slobodin says:

    Nice post about a terrible situation!
    One of the girls in the 1st grade class that Robin is student teaching in this year is unfortunately on a similar boat trip to Clio’s. She is also a patient at the Jimmy Fund Clinic, and it was nice to hear from Robin that some staff from the clinic came to the class to talk to the kids.

  3. Susan Allen says:

    So *totally* unfair. Thinking of young Sam and all his friends and family. This is when I wish I had a working magic wand.

  4. Joan Friedman says:

    Jane, you are so right about that feeling when someone “gets it”.
    It is an incredible sense of connection and relief.
    Sam will be in my thoughts too.

  5. Elaine Howe says:

    My heart breaks for these children :( I had a cousin die of cancer 50 yrs ago when there was no chemo or radiation & I’ve helped care for 3 family members w/cancer . I saw a video by a doctor a while ago that,s experimenting w/ inactive AIDS virus who gave it to a little girl who had no hope & it actually cured her .Also have read that there is a lot of research w/ hemp oil &different marijuana extracts . Are any of these even being offered for children w/ no other treatmet left to try ?

  6. Brad Patrick says:

    Her husband Michael was my best friend from 5-8th grade. We became friends when we were a little older than Superman Sam. No words.

  7. Kathleen says:

    Life can be so ridiculously unfair and horrible sometimes. May this family know deep, deep strength and surprising joy in the midst of such sorrow. Thinking of you, too, Jane. You’ve had a really heavy load this month. xoxo

  8. Oh damn. I can’t even….

  9. Guajolote says:

    I saw your fb post the other day about this and went to her blog and read a lot of it. It felt like the right thing to do – know about this boy and remember him now and later.

  10. Abbi Perets says:

    Beautiful post, Jane. I also wrote about the shared pain issue. It is so scary, so painful, so hard.

  11. Deb says:

    You are so right about ‘getting it.” My daughter died 8 years ago at the age of 27 from ALL. She actually died from a complication of her second bone marrow transplant to cure the disease. She left behind a 6 year old son. I read (follow) Jane because I cant forget the fear, or feelings this horrible disease gave me as I watched her go thru it. I bawl my eyes out when I hear how wonderful Clio is doing – Im so happy for her. I think I just need to know someone who beats this horrible disease. I will pray for Sam and his family as they start this process of saying ‘goodbye.’ No child should have to go thru this. No parent should have to go thru this. Prayers to

  12. Deb says:

    You are so right about ‘getting it.” My daughter died 8 years ago at the age of 27 from ALL. She actually died from a complication of her second bone marrow transplant to cure the disease. She left behind a 6 year old son. I read (follow) Jane because I cant forget the fear, or feelings this horrible disease gave me as I watched her go thru it. I bawl my eyes out when I hear how wonderful Clio is doing – Im so happy for her. I think I just need to know someone who beats this horrible disease. I will pray for Sam and his family as they start this process of saying ‘goodbye.’ No child should have to go thru this. No parent should have to go thru this. Prayers to all

  13. SaraK says:

    I’m a college friend of Phyllis’ and I have to say, I hate the feeling of helplessness I have with regard to Sam and their family’s pain. I hate it. There’s nothing more to do besides pray, think of them and what? I started a fundraiser for college friends. I write stupid emails. But yeah, following this “boat trip” of hers and yours (thanks to her Facebook posts) is so, so hard. And I’m not even living it.

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