For Leah

Imagine you’re the parent of a 5-year-old girl. She is strong, determined and full of life, as every 5-year-old should be. And most importantly, she has always been happy and healthy.

Then one day she starts complaining about headaches, dizziness and a little nausea. It’s slightly unusual, but nothing to get in a tizzy about. Until a visit to the pediatrician reveals she’s having trouble with basic motor skills. So the doctor schedules an MRI.

Medulloblastoma.

You can barely pronounce it, nevermind comprehend its devastating awfulness. But the bottom line is it’s cancer, and your little girl has it. The tumor is removed and found to be malignant. But because she is young, strong and full of life, she fights back. She recovers quickly, even to the point she can leave the hospital and finally go home.

But the celebrating and happiness is short-lived.

The vomiting returns. Then the dizziness and headaches. So it’s back to the hospital less than three weeks after the first surgery, only to discover even more unimaginable news. The tumor has already grown back. And it’s back with a vengeance. Once again it spread and multiplied. It’s also putting pressure on the brain stem—which regulates breathing— meaning she can’t even draw sufficient breath from her hospital bed.

Surgery is no longer an option. And as if that news isn’t bad enough, it forces her parents to make a heart-wrenching choice. You see, before the return of the tumor it was possible (and favorable) to treat the cancer with slightly lower doses of radiation to prevent harm to the girl’s still-developing brain. But when faced with a cancerous tumor more aggressive than many doctors at a renowned Boston hospital have ever seen, the stakes—and circumstances—change dramatically.

Imagine being the parent who has to decide to move forward with higher amounts of radiation, knowing full well the chemo has the potential to cause severe developmental delays to the child’s brain. But you do it, because it’s what you have to do.

And then, in the middle of this tornado of misery and seemingly just for sick kicks, the family dog dies. I shit you not, I couldn’t make it up if I tried.

Last month, this twisted nightmare became a reality for Leah Fernandes and her family.

Leah is the 5-year-old daughter of Rhiannon, one of my friends from high school. Rhiannon and her husband Peter have two kids, and they’re well known in my hometown of Norton. Peter owns and operates Chartley Country Store, an infamous little convenience/grocery with a kickass butcher shop. My son Will knows it as “The Cow Building” because of the picture of a cow on the side of the shop. And not to be outdone, Rhiannon is a rockstar who plays in a cover band called Kunochi, which plays all over southeastern Mass.

I haven’t talked to Rhiannon in years and I’ve never met Leah or their other son Lukas. But Rhiannon is one of the sweetest, most down to Earth people I’ve ever known. She’s always been kind and considerate, yet tough and fiesty. And I imagine the apple didn’t fall far from the tree.

As I read their accounts of the ordeal I was overcome. In all respects. As a parent, I cannot imagine going through this. I just can’t. I’ve tried to put myself in Rhiannon and Peter’s shoes, but it’s impossible. My mind literally cannot fathom something this fucked up happening to Will. I think I’d fall to pieces, and rightly so. But Rhiannon and Peter have remained so strong. Both for Leah and their son Lukas. And their bravery in the face of incomprehensible woe is truly the stuff of legends.

However, they are outdone only by their daughter Leah.

She’s smiling in every picture they’ve taken over the last month. After two brain surgeries and more bad news than any kid should ever have to handle, Rhiannon said she’s doing arts & crafts and enjoying the bounty brought to her by the Easter Bunny. And amazingly, Leah has never complained. Not even a little. Not even once.

If there’s a silver lining here, it’s been the community’s response to “Leah Bear,” as she is lovingly called by friends and relatives.

To date, more than $10,000 has been raised for the Fernandes family to make the long commute to and from Boston, as well as meet expenses that occur when parents have to take that much time off work. And that’s without a lick of media attention. While I wish I could donate more money, I’m trying to contribute by reaching out to every local media contact I have to get them to do a story. A few media outlets are in the process of working something up, but I wanted to put it on the blog as well.

There are motorcycle charity rides, comedy shows, Texas Hold Em tournaments, bracelets and a handful of other events set up to help Leah. You can check them all out and get more info by clicking here or here. They had a PayPal account, but I’ve been told it’s frozen. So I know times are tough, but if you can spare even a little bit, all donations can be mailed to:

Leah Fernandes Donations

c/o North Easton Savings Bank

P.O. Box 495

25 W. Main Street

Norton, MA 02766

I can’t imagine having to go through this and I wouldn’t wish it on anyone. But I know when MJ and I were going through our ordeal last year (which does not even come CLOSE to what the Fernandes’ are enduring), I was comforted by the humanity displayed by friends and strangers alike. I can’t tell you what it meant to get cards, emails, donations and even comments from people—some of whom didn’t even know us—telling us we were in their thoughts. And while raising awareness for Leah is miniscule in the “Pay It Forward” department, it’s a start.

I think about what’s happening to Leah and I cry. I can’t help it, it breaks my heart. But she can’t cry. Neither can her parents. They can’t afford to because they are literally in the fight of their lives. We can’t possibly know their pain or erase it. But we can help to ease it, even if it is just ever so slightly.

So please, if you can, donate. And if you can’t, that’s OK. I invite you to leave a comment here or on Leah’s Facebook, supporting her and her amazing family.

Leah, I follow your progress every day. And while you don’t know me, I hope you know there are people just like me who you’ve never met, thinking about you each and everyday and trying to do whatever they can to help you. Same goes for Rhiannon, Peter and Lukas, and all of your close friends and family members.

Keep fighting Leah. If you’re anything like your mom, you have enough class, dignity and strength just in your pinky finger to beat this thing. Because you WILL beat it!

Share Button

16 thoughts on “For Leah

  1. I can not imagine the horror of this illness. I have a five year old daughter myself and I actually just did a blog post about how lucky I am. This just makes me realize how lucky I am even more. Thank you for posting this, and I pass on my best wishes to the family.

  2. Aaron,

    Thanks so much for writing this incredible story and attempting to get the word out to as many as possible. I caught a glimpse of the Ride for Leah on a friend’s Facebook post, and like you, can’t imagine going through this ordeal. The living nightmare that’s unfolded for Leah and her parents is another reminder that our own problems pale in comparison to their struggle.

  3. I’ll be praying for Leah and her family. Thank you for sharing her story. This should serve as a reminder to the rest of us to hold our children at least once, every day. I know I plan extra long hugs for my kids when I get home tonight.

  4. well written article which also states my thoughts and feelings… Let’s all of us keep this going with only positive thoughts… Love, Cousin John…

  5. Well written, Aaron. I have many of the same thoughts as you do. Keep on fighting, Leah! You will overcome this.

  6. Our daughter Brittany has endured radiation therapy, brain surgery, as well as numerous surgeries to remove malignant tumors over the last few years. Children’s Hospital Boston has worked miracles for us and Brittany is now a thriving 20 year old college student! Have faith that Leah is in the best place possible for her treatment. Her strong will and positive attitude will pull her through whatever is thrown her way…it will only make her stronger. Our prayers are with all of you.

  7. Aaron im not sure if you remember me…littlest kirby merry but Ive just read your post and I would just like to thank you for being so considerate, thoughtful, and kind spreading the word. I am positive Rhiannon and Peter (and leah and lukas) appriciate it very very much. You are a friend of Rhiannons and you couldnt have described my big sister any better…she is a very down to earth determined woman that will conquer anything put in her path….and there is no doubt in my mind she (and fam.) will stomp on cancer like a tiny ant trying to cross it. Thank you again and I hope to see you and so many others at future events,fundraisers and with a little time Leahs “Im cured” party! <3Leah's auntie Merry

  8. Leah, I am sending healthy thoughts and prayers to you and your family from out here on the west coast!

  9. It is heartbreaking, but this is the sort of thing that the blogosphere can help with. I have nothing but best wishes for Leah and her family.

  10. I live in Rozzie, only a couple of miles from Children’s. If your friend needs a home cooked meal or just a place to decompress, would you tell her I’d be happy to help out. My son has spent many weeks in Children’s and I know how alienating and depressing it can be.

  11. Kepp strong Leah! we have met your dad and the rest of your family and you are the most wonderful people ever!

Leave a Reply

Your email address will not be published.

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>

CommentLuv badge

What is 2 + 2 ?
Please leave these two fields as-is:
IMPORTANT! To be able to proceed, you need to solve the following simple math (so we know that you are a human) :-)