A few weeks ago, I was introduced to Miss Layla Grace. There are probably very few people who blog or twitter that don’t know her story — a very “unfair” story.
At only two years of age, Layla passed away this week from stage 4 Neuroblastoma cancer.
Two years old — my Little Lady’s age.
The blog her parents started, chronicling their journey with sweet Layla Grace, is heart-wrenching to read. Each time I visit, I break down into sobs: tears for that baby, tears for the unfathomable heartache of her parents, and tears for her big sisters (who are struggling to understand what’s happened). And, through my tears, I look into the faces of the Little Lady and Mr. Boy — little faces that always seem to have dried snot on them, no matter how many times a day I wash them. I look at their faces and thank God that I have the opportunity to wash those faces, to kiss those faces, to cup each face in my hands and say, “I love you, baby.”
Neuroblastoma is scary; over the past year of blog reading, I’ve come across several families dealing with this ugly, ugly cancer. They’ve shared their stories — struggles and successes, and helped spread the word about this disease.
One such blog is Pennies for Penny.
Penelope is another sweet baby dealing with stage 4 Neuroblastoma (and, as of this week, RSV).
I can only imagine how rough this week in particular has been for them. Not only are they watching their baby, who now has partial paralysis of her body, struggle in the hospital (she’s been there for three weeks), but they had to “experience” another child — another little baby girl — lose her battle. I can’t imagine the pain and fear they must know each day.
Right now, Penelope’s aunt, Rhea, is working to help raise Neuroblastoma awareness and raise money for Penny’s medical care. She states on Penelope’s blog:
We want need to get the word out about Penny and her fight to beat cancer. She has an insurance policy, but frankly, it kinda sucks. It will only cover 60% of her medical treatments. Well, in this country, cancer treatment isn’t cheap. It’s downright, take your breath away, expensive as hell.
No parent should have to chose between saving the life of their child or financial ruin.
As part of the campaign, Rhea has started a fund-raising auction that will be held next Friday, March 19th, beginning at 6am PST (the auction will stay open throughout the weekend, closing on Sunday, March 21st, at 9 pm PST).
Geographically, I’m not close to Penelope and her family. I can’t visit in the hospital and bring her family dinner. I can’t take a toy to Penelope or read her a story. I can’t hug her mom and let her cry into my shoulder.
All I can do is the same as you — spread the word about Penelope’s struggle and the fundraiser.
Please visit Pennies for Penny; take a look at her cute pictures and at the list of items that have been donated for her auction.
Show her and her parents they have our support, love, and prayers.
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{ 10 comments… read them below or add one }
What an important post. Thank you for sharing their stories and lives. CANT EVEN IMAGINE!!
What an important post.
Thank you for sharing their stories and lives.
CANT EVEN IMAGINE!!
Thank you so much for posting this today!
Thank you so much for posting this today!
Thanks for helping to spread the word about Penny. She can use all the help she can get! Every penny goes for her care and every prayer is appreciated. It’s kindness like your’s and those of others that make this world a better place to live.
Thank you again!
Penny’s Grandma Alyce
I think this is such an important cause – thanks so much for helping to spread the word.
I think this is such an important cause – thanks so much for helping to spread the word.
Thank you for sharing this. I can't imagine their heartbreak and worry.
Thank you for sharing this. I can’t imagine their heartbreak and worry.
We are looking for anyone who may have experienced Jake’s situation and could answer some of our questions. He was staged 4 high risk at Children’s Medical Dallas, who are part of the COG. He has tumors on …both adrenals, an abdominal mass on the left that was removed total gross resection, a paraspinal mass on the right, that appears to be encapsulated, and several infected lymph nodes. The removed tumor was 70% diff and 30% undiff. He’s not MYNC amplified and there is no disease in his bones/marrow or blood. Children’s has talked with all the COG hospitals including Dr. Maris and Dr. Shimada and they all concur that he is stage 4 high risk due to the spread, the histology of the tumor and his age (2 and a half) and want to treat full protocol. We contacted MSKCC, where we are taking him Monday, who received his records, and say that they also agree that he is stage 4 because of his age and the spread but want to treat him with surgery only (which we understand is almost unheard of) to remove the paraspinal and both adrenals and then observation. MSKCC is of the opinion that he is multifocal with several primary tumors that are independent and localized. Sloan is telling us COG would be overtreating and COG is saying that Sloan is undertreating. We are faced with a very difficult decision. Any information would be appreciated.