Welcome to Janie's website!
Janie was diagnosed with Stage IV Neuroblastoma on June 22, 2005. Her frontline treatment included 5 rounds of chemotherapy, 15,000,000 stem cells harvested, surgery to remove her main tumor and metastases Memorial Sloan Cancer Center), 2 autologous bone marrow transplants, (Click on Read Story for more...)
(Children's Hospital of Philadelphia) local radiation to her primary tumor site, 9 rounds of Accutane. Since February, 2006, Janie's treatment involved 6 different hospitals.
In November of 2005, Janie reached a point where there was no detectable cancer in her body. In November of 2007, however, it was discovered that the cancer returned. She began another clinical trial. After nearly every day in the hospital for brief treatment, she progressed after 4 months. Her fight is nowhere near over as we were resolved to give her the most normal life possible while hoping to hold her cancer back.
This page has been created to keep our friends and family updated about her treatment and progress throughout her battle.
Thank you for stopping by to visit our girl!
Scott & Colleen
Mar 22, 2009 9:06am
Janie's 7th Birthday
March 22nd, 2009
I nearly forgot how to sign in to update Janie's webpage. It's been a long time. I want to thank all of you who have tenderly encouraged me to make an entry these long months. Some of you I haven't even spoken to face-to-face.
We are making it here, somehow, and still learning about the world of grief. After more than eight months, most of our grief is still harbored in the overwhelming sadness of how Janie had to live and had to end her short life. Honestly, I think I am in the beginning stages of feeling sorry for myself (instead of her). Maybe 10% of the time, that's where I am. It brings with it intense anger that my family was torn apart. Oh, it makes me mad!!!
Still, she is with us everyday. For several months I would just have a good huge cry every morning and every night. At work I have more or less done my best to keep myself in check. I was recently writing to a colleague who sent me a note to check up what life is like these days. At this point, nobody is really afraid to have small talk with me anymore -- perhaps like it was before Janie became ill? With that, I feel this incredible pressure to move along with the rest, and be "me" again. Problem is, I am not at all sure who that is. It has been so long since Janie became ill. Who was I before that?
Her problems bagan in early 2005, over 4 years ago. For almost 6 months before her diagnosis, she began to change and show symptoms of her diseaese. We only slept through 2 nights during those six months, as her tumor would grow at night, and the pain would wake her up. I was ghastly worried, and it became worse. All the while, as her doctor clearly had me pegged as an over indulgent and obsessive parent, he assured me that her symptoms were NOT those of cancer. (He said that straight up to the morning of her diagnosis.)
Those six months I was so full of fear I never left my kids except to work. That's when I started doing only what was necessary. Funny how a parent knows these things.
So she was diagnosed, and my grief began along with the rage at her utterly foolish pediatrician (whom, by the way, never so much as apologized for allowing her to live in agony as her cancer spread, without treatment). A few short weeks after that, we had hope in Drs. Brecher and Grupp, and we began to carry on.
Of course those of you who know me best also know that I knew no matter what we did, the character of her disease at diagnosis meant that our odds of winning were so slight. I never lost sight of the reality. So during those years I cautiously prevented myself from denying that reality. I really had to, I didn't think I could start all over if her disease ever came back.
I remembered having a bit of a heart to heart with Dr. Grupp one day during Janie's first transplant. He was so trying to encourage me to be hopeful, but he also understood, it seems, exactly where my mind was. I told him tearfully that I would be indebted to him forever if my Janie girl could have just one year without any treatment at all.
She finished her treatments Christmas day, 2006 and had almost 1 year of nothing but surveillance. But I wasn't "me" then, either.
I remember thinking in the spring of 2007 that I had to start fulfilling every one of her wishes, because we were coming up on the period by which most relapses occur. We crammed in 2 vacations before her Uncle Mike's cancer took over his body, and we turned our attention to him and Aunt Karen.
After he passed, we had only a few weeks before she relapsed, when Janie and I were at Roswell more days than we weren't, until her disease started threatening to spread to her brain stem. This is when we whisked her to Disney one last time, and brought her home where she had a good bit more than a week to play like she was a relatively normal child. Just yesterday I was going through bank records and realized that the 6th of June, 2008 was the last shopping spree she had.
The next 40 days were an eternity, as we watched her suffer and decline. I used to stare at the ceiling of my bedroom, where I lay on my bed each morning to coach myself after my shower to get up, and help her through another day of dying.
Really, the rest of the summer after she passed is a bit of a blur. I remember getting notified by various agencies rather requently of counseling and support services. In my mind, I really had trouble wondering why somebody should go to counseling because their child died. Don't get me wrong here, but I would try to explain to these folks (when they called) that I didn't want my grief to be taken away, or even lessened. It seemed to me that I was supposed to feel the way I did, and I would say I never reached a point where I felt I couldn't function. Still, I didn't want it to be easier - I wanted to feel it, I needed to.
I feel badly for thinking I knew what others in our position have gone through. Firsts, firsts, firsts - first first day of school, first Halloween, first Thanksgiving, first Christmas, first New Years......nonsense. Every moment is a first.
The first time you clean the stair rail - you wonder, are any of her fingerprints left anywhere? The first time you open a drawer and find a hair twisty-thingy, you put it right where she always kept them, and wonder in agony, "How long will these be here? Can't they always stay right here?" The first time you see a commercial with a mom and a daughter, you wonder if you will ever be able to watch a commercial with a mom and a daughter - ever - without crying.
The first birthday after she dies, you wonder if you will ever get over what happened to her and her family, but you know you have to keep going forward and you hope that you can.
So, where is "me"? I am sure she is gone too. There has got to be a new "me" out there somewhere. I hope someone will tell me if they find her.
I'd love to tell you the story of the day our Janie came into our lives. It's what I thought I could do this morning. Maybe next year. For her birthday I will think of her and try also to think of the days you had that much joy. Let's remember them together, always.
For everyone who has held us up, understood, hung in there with us, pulled us along, sent us notes, and squeezed us tight, there is also the anguish of never being able to feel satisified that we have let you know that we know we are here because of you, and the anquish that we will probably never be able to reveal the sameness in your deep human character. All we are is grateful to have another day with you, more so now, since our days with her are over.
Thank you for reading. I am sorry it wasn't a happy post -- especially for those of you who waited for it. I will try again some other time.
Peace, hope, and love to all.
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