Friday, March 12, 2010

5 children

When I started this blog almost three years ago, I spent most nights in a pit of fear, adjusting tubes, cleaning vomit and watching my child waste away. In between terror and tears I searched constantly for "neuroblastoma blog" online, in desperate need of finding others like Toby.

I found a boy named Will, who lived in Boston, and through his father's writing discovered Erin, Max, Sam and Erik. These were seasoned neuroblastoma families, with a lot of history and knowledge. The children were at various stages in treatment and the parents carefully and precisely outlined every drug and reaction. Their blogs became my source of news and my worldview. Pretty soon I found myself starting at the beginning and reading each and every post, delighting in Max with long golden curls, following Erin at camp, marvelling at family photos of Sam with his red-headed brothers, putting Erik's words to memory and always circling back to Will, where it all started.

Each of these five children gave me respite, hope, and a sense of belonging. Through their parents' words I was able to string my days together and remain human. I linked to their sites with a sense that these were the children who would make it. How could they not make it? They each lived so large—running, laughing, overcoming every obstacle with pluck, determination and joy.


In less than 2 years, four of these five children have died. Sam died today.

This is the beast neuroblastoma. Look on any neuroblastoma child's site, and the links to dead children far outweigh the links to the living. In our world we call them angels and warriors, awful words to describe a reality that should not be. I know this is difficult to read. And probably not the reason you dropped by. I'm sorry. As I wrap my arms around Toby, and virtually around Will, I wish Erin, Max, Erik and Sam were here.


One of the first comments to Toby's blog was from a woman who signed her name, "an Angel Mom." I didn't understand the terminology, but after just a few days in the world of cancer, I realized that her son had lost his fight. "Angel" is a word to describe the indescribable, a way of marking a child's passage to something else. I'm so ashamed to admit that I was scared of this woman, and worried that her comment could somehow decrease Toby's chance of beating this disease. Now, almost three years later, I have thankfully grown a little: I'm not scared of people whose children have died. The bigger struggle has become how to dull the pain of overidentification. And how on earth to fathom their pain.

If you can, please visit these children's sites and offer their parents a word of comfort. Thank you.



Donna Ludwinski said...

Oh Mooki, how beautiful, powerful, heart-rendering are your words. This post touches me to the core. I am so sorry for all the loss. You say it so well, and boy does it make me cry. May God have a very different plan for Toby and Will. Much love for you and precious Toby and praying always for his life, Donna

Will's Dad said...

Nothing highlights the truth like this post. I've seen the vast majority of Will's 'contemporaries' gain that angel listing next to their name on far too many websites; on far too many lists.

The loss tears me open. It inflicts actual physical pain. I want to do something but I am just so powerless against this cowardly enemy who will not stop stealing our kids.

sally said...

Oh Mooki, what hand you have been dealt. I can wait to see you and hug you. Sally

Anonymous said...

Blessings and Good Health to Toby..your blog entry is very moving--Gloria(Saltzman)

Goodnight, Mom said...

What very moving words. I've been part of this NB world for two years, my daughter, Eva, is well right now but I, too, have found the words from the families of Will, Erin, Max and Sam so insightful and helpful in our journey. My heart goes out to Sam's family and I will add you and Toby to my prayer list.

achsa said...

Dear Mookie, your words are so touching. I can't imagine what fear you are going through, I wish you didn't have to. I hug you in my thoughts. Achsa

Anonymous said...

I've been following you're family as well as the others for years now (too many.)

I just spent five minutes typing a sentence, back-spacing and deleting, and re-typing. I can't find the words. I have multiple healthy children (fingers crossed,) so I've got a little of the hesitation you so aptly described with the "Angel Mom," except mine would be "underidentification."

Just know there are many of us following you, giving as much positive energy and supporting your cause with all of our hearts.


Anonymous said...

Oh Mooki,

This is so very sad. I wish peace for Sam's family, and my heart breaks for their loss of such a beautiful boy. A boy that will be missed forever.

You do not have to apologize for your words, and the words that you write are difficult to read, but that is okay.

Its a daily battle. To take care of yourself and your family is the most important thing. Mooki, I will never forget how you reached out to me and my family two years ago when Carly died. You were not afraid, you were like a light in the storm...cliche but so true

I say go ahead and do what you can do to dull that pain of overidentifying. I mean that in the kindest way :). You have your struggles, and life can be so difficult. Its okay to step away and have some peace and joy.

I have followed Erin's family, after they lost Erin. Such a beautiful and spirited girl. I found Erin's mom as a source of comfort for my grief. I too must remember to step away, because at times it is too tempting not to cry endlessly.

I would love to see you on a SUNNY day :)

love love love, Sara

Anonymous said...

Dear Mookie, This is the first time I have visited your site. My name is Lisa my daughter is Melina. We have been battling for five years. Until two years ago I didn't know a Neuroblastoma (virtual) world existed. Since finding all of these amazing families they have given me courage, hope and tons..tons..of valuable information. i don't think I could have mentally survived this journey without getting to know them and their beautiful kids.

Thanks for such a honest and open post.
With hope and prayers for our kids,
lisa Riniolo mom to melina

paula said...

I am the Maria´s mother. in september 2007 she was diagnosed with a stage IV neuroblastoma. She has followed the cojec protocolo.
it was a very hard journey.She almost died 3 times. but she strugled with the monster. almost 3 years later i´m here to say that she is well. I don´t know for how long... cause i know the monster is silence and it can apear any time...
but I belive in god...and when the doctor told me that she had cancer i put her in jesus arms and told Him to do what He has to do...I saw mothers without their angels but i know they are in heaven praying for us.
Today I´m here to tell you to have hope...
sorry for my english. I´m from Portugal.
Maria has a space where i tell her

Chris said...

I learned something new today. Congrats to cancer survivors!