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Just got a phone call. I’m literally trembling with happiness.
I’m looking forward to the future, despite all its hardships. Things are looking up. It’s an adventure out there, I can’t wait!
welcome to the family :)
Childhood Cancer Awareness Month - Day 30
Layla Grace Marsh
- Forever 2
- Stage 4 High-Risk Neuroblastoma
- Diagnosed: May 7th, 2009
- November 26th, 2007 - March 9th, 2010
“Your life was a blessing, your memory a treasure; you are loved beyond words and missed beyond measure.”
Today is the last day of September. Don’t stop raising awareness for pediatric cancer just because this month is over. 46 kids will be diagnosed tomorrow, and the day after and the days after that. It doesn’t stop here. 7 kids will still lose their fight every single day. We need to be THEIR voice! Don’t sit around and wait for it to happen to someone you love - because it can. Childhood Cancer doesn’t care who it attacks. It doesn’t care who it kills. STAND UP, SPEAK UP AND BE AWARE.
To my hero, the one who changed my life, Layla Grace - I am doing the best I can to change this world, baby girl. I love you with every piece of my broken heart and miss you everyday. I will continue to raise awareness, I will continue to fight and every good I do will have your name attached. Save a place for me…
“If I can prevent even one family from feeling the pain that we’ve felt, then I know I’ve succeeded and Layla would be proud.” - Shanna Marsh
When you died….
There was…no way to describe how…….shocked…horrified…paralyzed…I felt.
I still feel it, when I think of you…
When I found out that you had leukemia, it just didn’t really register. For some reason, I just thought about it like I would a cold. Like it…
So this is my uncle George, he was diagnosed with throat cancer a few months ago and was put into hospital. Yesterday I went and saw him and the doctor told me it had gotten worse and the cancer had spread it is now not only in his throat but all throughout his body. They say he will be lucky to make it through until Tuesday. He was put back into hospital about a week ago, that was the day his daughter left to go to Thailand, her mum told her that her father was really sick and he may not make it, but the choice was hers whether or not she went away. She chose to leave without saying goodbye to her father. She isn’t due to return to Sydney until Tuesday which means she might not ever get to say goodbye to her father. I love my uncle with my whole heart; I would give anything to make him better. We spent 4 hours with him at the hospital and he just couldn’t do anything. He just lay there I heard him choke a couple of times on flem, I heard him struggle to breath. Honestly no one deserves this pain. This is the last photo I have with my uncle. I would give anything to have him well again. I love you Uncle George, you will forever be in my heart <3
rest in peace.
My name is Ruel Alexander Bobet, I’m a 20 year old student at The University of Texas and a cancer patient at MD Anderson. My diagnosis of neuroendocrine stomach cancer came a year and seven months after my Dad was diagnosed with colon cancer with metastasis to the liver….
Texas 4000 Candidate Selection Committee,
I am writing on behalf of applicant Ver Starr, who is entering his 2nd year of studies at the University of Texas, Austin. I have had the pleasure of knowing Ver through his involvement in sports and as an Athletic Training Student Aid in my Sports…
hope to see your name on the interview dockets!
my grandfather was a korean officer. He had several medals from the country for courageous and faithful services. But then he got in a car accident and was forced to retire at quite a young age. My grandma always said he would have been such a great officer if it wasn’t for that accident. Since…
rest in peace.
It cost $3 billion to sequence the human genome at the end of the project in 2003. Now, with advancements in technology - especially semiconductors - that cost is approaching the magic number of $1000.
Ion Torrent is a company at the head of this cheap genome effort. They use a unique chip with over a million sensors on it to simultaneously read about 1.2 million DNA molecules base by base. Added together using computer programs, you can assemble a whole genome this way.
They wrote this week about how this technology works in the journal Nature. Using a thousand $99 chips they sequenced a complete genome. Whose genome? Intel founder Gordon Moore, who famously (and appropriately, in this case) observed that the number of transistors on computer chips was doubling every 2 years.
Think he ever saw this coming?
revolutionary for cancer research.
I physically cannot cry. I cried for about 5 minutes today, but that was all. And it does not make sense to me at all. How can I not cry? My baby is gone. How am I not sobbing?
I have a masters degree. I first learned about the 5 stages of grief in my high school sociology class with our basketball coach, coach Padek. We read Tuesdays with Morrie. I don’t really remember discussing the book in class, but I do remember that grief has stages. (It was also in that class that we learned about the terrorist attacks on 9-11. I was a senior in high school. You can do the math). I then went to Baylor and learned more about the 5 stages of grief. And then I went to grad school at Baylor and learned that Kubler-Ross coined this model while working with terminally-ill patients in the late 1960’s. The stages are fluid, and not every person experiences every stage. And just because you move from one stage, like denial, does not mean that you won’t circle back to it again.
So yesterday I was in denial. Like Matthew said, we spent the whole day looking at cemeteries. Every time I looked in the back seat, I pretended like the car seat was still there. I rationalized it to myself that maybe James was with a relative and they needed the carseat. Why else would it not be in my car anymore? Which that doesn’t even make sense. The only nights I ever spent away from James were the two nights that I was forced to go home when he was in the hospital. I had back surgery when James was 6 weeks old. I was supposed to spend the night in the hospital that night, but I just couldn’t bring myself to be gone from him that long. I thought about it, and the largest chunk of time I ever spent away from him was 10 hours. And that was torture.
So now I have spent 55 hours away from my dear boy. (Edited: I lost an entire day when I first posted this. I seriously forgot it was Monday.) Nothing makes sense anymore. It doesn’t make sense that he would be spending time with anyone else- I would have never let him! Those of you that know me in real life know how desperately I love James. He was my everything. Wherever I went, James went. If James couldn’t go, I didn’t go. Which is probably so incredibly unhealthy.
Then it hit me. The anger. It rushed in, all at once last night. And man, was I angry. I’m still angry tonight. How utterly unfair it all is. Why my sweet James? Out of all the babies in the world, why him? I’m angry he didn’t have a chance to fight. I’m angry that the chemo wouldn’t have worked. I’m angry that we only got 2 days at home. I’m angry that there is really only one place doing research on his type of tumor. I’m angry I have a hand mold kit sitting on my dining room table that I didn’t even have a chance to do. I’m angry that the funeral home asked me his educational level today. I’m angry that he will never say “Momma”. I’m angry he will never walk, talk, sing.
But the truth is, I’m angry because of all the things that I wanted to experience with him. It’s so incredibly selfish. Because Jamesie didn’t need any of those things. James only needed my love. He needed to feel safe and secure, which he did. The anger is from a selfish place. And not that I’m not justified in being angry- I think any good counselor will tell me that it’s ok to be angry. And I own my anger.
And the Guilt sets in. I feel so guilty for being angry. I grieve for James. But I also grieve for those of you who have emailed me that have lost your sweet children. For those of you who lost babies in the middle of the night, without a chance to say one last “I love you”. I grieve for those of you who lost children after long, hard battles with terrible diseases. I grieve for you who lost children who never took a breathe in this world. I grieve for those of you who desperately want your child and are unable to have them. Those of you with empty arms and no baby to hold.
So I feel guilty that I am complaining that I only had 8 beautiful months with James, when I know full well that there are so many of you who feel like 8 months is double, triple a lifetime.
no words can speak. rest in peace.
My father was initially diagnosed with pancreatic cancer in 2000 or 2001. His doctor gave him six months. He went home, curled up on the couch, and stayed there for two days. On the third day he sat up, announced to his wife ‘I’m not dead yet’ (probably not in the Monty Python voice), and proceeded to play guitar, watch football, and get drunk.
Through several months of treatment and testing, his cancer went into remission, and he lived - happily and healthily - until new tumors were discovered in 2008.
He died early Christmas Day, 2009. Less than a week before his death, he was performing with his band at a local pub - just as he had for all his adult life. He never stopped doing what made him happy, and when he passed he was surrounded by people who loved him, loved being around him, loved the person he was and the person he inspired others to be.
His last words to me were ‘What are YOU so worried about?’ as I helped him back into his hospital bed. He never stopped joking around.
He fought cancer with hope. He didn’t hate what his life had become. He didn’t spew bile about the illness all the time. Yes, he bitched occasionally - he had every right to. Yes, he had days where he was in pain or couldn’t eat. Yes, the treatments were often just as bad, if not worse, than the effects of the cancer itself. None of this mattered to him though. He just enjoyed his life, as much as he possibly could, until his time was up.
He was probably the strongest person I will ever know, and it’s not because he was strong in the face of cancer. It’s because he had the courage to live his life the way he wanted.
We’re all dying right now. Every one of us. I could die tomorrow. You might feel robbed of the vague promise of longevity, but really you’ve been given permission to infuse your life with all the joy, enthusiasm, and reckless abandon most people wistfully reserve for their retirement.
You don’t have to wait for the right job, the right person, the right season, the right place. You’ve been granted the right to live your life the best way you can, right now. And there are thousands of people here cheering you on.
So, do the things you’ve always wanted to do. Or just do the things that make you happy. Fill your time with enjoyment and appreciation. We should all be living our lives this way, because we could die at any moment.
Be kind to yourself, stay hopeful, and love what you have. My thoughts are with you."burke_no_sleeps