Do You Know What To Say?
October 18, 2008 by BloggerNewbie
“Do You Know What To Say?”
Do you know what to say? More importantly, do you know what NOT to say? I know that in difficult situations, people are nervous and say the first inappropriate thing that comes to their minds, but I’m here to suggest a few rehearsed lines that will work in a variety of situations. Read more
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Today is Childhood Cancer Awareness Day
September 13, 2008 by BloggerNewbie
Today is Childhood Cancer Awareness Day
Childhood cancer kills more kids each year than asthma, diabetes, cystic fibrosis and AIDS combined. 
A measly three percent of the budget for the National Cancer Institute goes towards pediatric cancers. 12,500 of our innocent, precious children will be diagnosed with cancer this year.
One in four will not survive childhood cancer, two in four will suffer long term/chronic side effects.
Many of those who survive the brutal treatments will be scarred in ways that will greatly affect their quality of life. Those who do not survive leave behind devastated families with heartbreakingly empty arms.
“Most of us have far more courage
than we ever dreamed we possessed..”
- Dale Carnegie (1888-1955)
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September 13, 2008 - Childhood Cancer Awareness DAY
September 9, 2008 by BloggerNewbie
September 13, 2008 –
Childhood Cancer Awareness DAY
Can you think of anything more important than our children? No.
The wonderful world of the blogosphere bands together on all kinds of worthy causes. We should be proud to know we make a HUGE difference in whatever we speak about.
You’ve heard about how “every vote counts”? Well every dollar counts, every action counts, every prayer counts. The gold ribbon is the symbol of childhood cancer because our children are more precious than gold.
How would you feel if you knew that writing a post asking people to act on something, anything to do with childhood cancer saved a child’s life?
September is Childhood Cancer Awareness Month. Saturday, September 13, 2008 is Childhood Cancer Awareness Day. Please do something.
Toodles - Blog Happy!
Cancer you monster, let go of our son. We won’t let you take him, don’t think you have won. Thought you could sneak in like a thief in the night, Trample our spirit, then take our child’s life. You started this battle, but we’ll win this war. We caught you red handed, you’ll live no more. We fought you with chemo, it made him ill. Your time here is short, its you this will kill. With courage and faith, his fear he’ll walk through. There is no surrender, just the death of you!
~ Author Unknown
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There Are No Words
September 4, 2008 by BloggerNewbie
There Are No Words
This is the conclusion (for now) of our story we are sharing for Childhood Cancer Awareness Month. We struggled with telling our story. It is very painful. “I Don’t Know Where To Begin“, Many times we would ask ourselves - “Now What Do We Do’. We only had once choice - Hope Is Our Only Hope.
There are no words to describe the frustration and sadness of having to stand by and helplessly watch our little boy fight for his life. He was a trooper though. He very seldom complained.
Drake started his chemo and was able to come home between treatments. His immune system was so compromised that he was only home a few days at a time before he was back in the hospital with one infection or another. I didn’t even know half the time what exactly was making him sick. All I know is that he was sick. He didn’t really have too many days in a row where he felt well.
It was time for his first scan to see if the chemo was working. He had finished two rounds. I was hoping it would shrink at least 10%, I secretly prayed that it worked and that I would even take 5% - just please let it shrink. It has to work. I don’t think there was a plan b.
Words cannot describe the joy and relief! The chemo was working. In fact the tumor had been reduced by almost 30% and his lung was starting to slowly inflate. Thank you God! I think I’m going to be sick. (That didn’t make sense.)
We weren’t out of the woods yet and we still had a long way to go. This is definitely a rollercoaster ride. Another two rounds of chemo. Poor baby. In and out of the hospital, sick, lost his hair – cute little bald guy. Mommy’s nerves are wearing thin. This is so all consuming. But she’s doing such a great job managing it all. I am so proud of her. Everyone had to go back to work so the primary care fell on her shoulders and her husband’s shoulders. Her husband is awesome.
Drake has spent his first Christmas; first birthday; 
and first Easter in the hospital. I promise him this is not going to be his celebrations next year. My daughter knew that she would be returning to the hospital whenever a holiday was approaching. It was just their routine. The staff at the Children’s Hospital Boston made sure their celebrations were as “normal and traditional” as possible.
Time for Drake’s next scan. Please let the treatment still be working. Yeah again! The tumor is still shrinking. They think they can remove the remainder with surgery. Oh no – not surgery again. The last “little” surgery was devastating to him (and us.) It was time.
The surgery would be 6 to 8 hours long. The doctors promised they would take care of the baby like he was their own son. We had come so far, there was only one outcome. The chief surgeon came out 6 hours later and told us he’s confident he has removed the entire tumor. He had to remove part of his lung, part of his diaphragm and some of his muscle on the inner wall. The doctor said Drake was doing very well. He was stable through the whole surgery.
Drake came out of recovery without the respirator. What a strong dude. He had a few connections but he even woke up a few times. He had quite an incision but he came home within a week. Unbelievable. I was amazed.
He would need two more rounds of chemo. I can’t even imagine what that poison is doing to his healthy tissue. All I know is it saved his life. The first scan would be three months after his last round of chemo. The tumor can’t come back because they have no plan b.
His first scan was a success. Wahoo! Drake has been cancer free for three months! He is running all around causing all kinds of trouble. We can finally see his personality. He has a great sense of humor. He doesn’t stop yakking! He just had his first hair cut.
Our baby is a happy story; a story of hope and faith. There are too many that don’t have a happy story. That’s not right. These little guys are innocent children. We need to do something. September is Childhood Cancer Awareness month. There is probably a cancer fundraiser in your area this month. Please participate. Every little bit helps. The actual day is September 13. Please say a prayer for the children, their families and their medical teams on that day.
There are so many ways to help and participate. Little ways to big ways. Everyone can do something.
Toodles - Blog Happy!
” The more you care,
the stronger you can be…
- Jim Rohn
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Hope Is Our Only Hope
September 3, 2008 by BloggerNewbie
Hope Is Our Only Hope
September is Childhood Cancer Awareness Month. It is very important to share stories and make people aware of the reality of childhood cancer. It is ugly and it is real and yes, it does really happen. There are also stories of joy and hope. And I can tell you from experience, joy and hope are scarce when you and your family are suffering through cancer.
The beginning of our story started with the shock of cancer. That happens to other people. Not our family. This can’t be happening. Hospitals and doctors have made plenty of mistakes before; after all, they are human. He’s just a baby. When are they going to fix him so we can take him home?
Now what are we going to do? Yesterday, I brought you to the start of the baby’s treatment. Oh, I think this is going to be a long road. It was about 10 days before Christmas. They wanted a larger biopsy to test the tumor outside the body; I guess they wanted a one inch by one inch chunk. Why don’t they take a bigger chunk? Maybe that would buy a little more time. We were concerned that the tumor was going to grow and we didn’t know what, if anything, chemo was going to do. There wasn’t any more room for this ugly thing to grow.
The team of doctors tried to prepare us for how Drake would come out of surgery. The little guy was going to be on a respirator, he was going to have tubes coming out of every spot on his little body. He would be in intensive care for a few days. He’s just a baby. I hate this.
But he amazed us. Drake came out of the procedure without a respirator, without any feeding tubes, without any other tubes. What a tough little guy! When we were finally able to see him, I peaked in his room while the nurses were settling him. I could see he was looking around for someone familiar. When he spotted me he tried to get up but decided that was not such a good idea.
We spoke too soon. We weren’t prepared for the little guy’s reaction to this “little” biopsy. Now I knew why they couldn’t remove anymore of the tumor. In the night all hell broke loose! He was having difficulty breathing so they reinserted the respirator which he didn’t like too well. He was transferred to pediatric ICU. They put him into a medicated induced coma. They haven’t even started treatment yet.
My daughter and her husband hadn’t been home in a month. 
My daughter wasn’t holding up so well. We decided it would be a good idea if she went home to be with their daughter for a couple of days. Their daughter was getting a little worried about her brother. It was getting close to Christmas.
We were going to have to celebrate Christmas for Emily. We went back to Boston the weekend before Christmas. We brought Emily, all the Christmas gifts and an artificial tree to our room at the Ronald McDonald house. We were lucky that we had a room at the Ronald McDonald house with kitchen utilities and our own bathroom. I had my Christmas with Emily a few days early. I had my video camera to capture granny’s girl when she discovered she would get to open presents early. Drake was spending his first Christmas “sleeping”. The team of doctors had taken Drake off the respirator Christmas Eve hoping he was going to be strong enough to breathe on his own. One of my other daughters stayed at the hospital with Drake so mommy and daddy could have Christmas with Emily.
Christmas morning at my house was pretty quiet. My husband and I were both preoccupied with our own thoughts and pain. I told him this was the worst Christmas ever. I called and spoke to Emily and she was excited that Santa Claus did know where she was. And of course she got just what she wanted – Hannah Montana stuff! They were on their way to the hospital to see Drake. My daughter called me about 15 minutes later and I could hear Drake in the background! They had him sitting up and he was jabbering away! This is the BEST Christmas ever.
It’s time for Chemo. We’ve all heard the horror stories. 
We were trying to prepare ourselves for the crap this baby was going to have to endure to “maybe” reduce the size of his tumor. The plan was: he would have a round of Chemo wait two weeks then another round before they would know if anything was happening. More excruciating waiting, more praying, more begging. Drake was going to be able to go home between Chemo treatments. He had been in the hospital for two months. It was going to seem good to have some resemblance to normal.
My story is a little longer than I thought. I need another break and you probably do too. I will definitely try to conclude my story tomorrow. There are no words.
Toodles - Blog Happy!
” Once you choose hope,
anything’s possible…”
~ Christopher Reeve
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Now What Do We Do?
September 2, 2008 by BloggerNewbie
Now What Do We Do?
Yesterday, I shared the beginning of our ordeal as the start of Childhood Cancer Awareness Month. It is very important to share stories and make people aware of the reality of childhood cancer. It is ugly and it is real and yes, it does really happen.
What Next? We don’t know what kind of ugly cancer is inside our baby. 
(I don’t think he knows he’s sick) And the “blockage” was not a blockage, it was the tumor. A tumor so big it completely covered his left lung, so big it took the place of his left lung. The tumor had collapsed his left lung and was pushing his heart and trachea over.
How could we not notice something like this? My daughter has those kids at the doctors on a semi-monthly basis. I wanted to scream –“How did this happen!”
They tested, and tested and guessed. Maybe it’s this, maybe it’s that. A week went by, still no real concrete answers. We were scared and we were frustrated. Somebody needs to do something and figure this out. Get that ugly thing out of our baby.
I had left home and my job in the middle of the night and it had been 10 days since I had been home. We were told it was going to be a long process. It was now just a week past Thanksgiving going into December. I decided to go home and regroup.
My daughter and her husband were notified that the team of doctors had come up with some answers and wanted a conference with them. I told the kids to call me and put their cell phone on speaker so I could be at the conference with them.
I do not have words to describe the “news” we received from our medical team. Nor do I remember much detail. But I do remember and will never forget hearing my daughter’s reaction.
There was nothing they could do. I was too stunned to speak – I couldn’t even make a sound. I could barely hear the doctors speak over the anguish coming from my daughter. The tumor was inoperable. Too Big. It was connected to tissue and too many areas of his little body. He would not survive surgery. The type of tumor was so rare they didn’t even have a name for it. They didn’t think it would respond to chemo. There was nothing they could do.
There might be a very slim, small, unlikely chance. 
We could bring him to Children’s Hospital Boston. They have a world renowned pediatric cancer department. If anyone could help him and again the chances are slim, it would be Boston. They looked at the biopsy of the tumor and they were willing to test different treatments on him.
Experiment. They want to experiment on our baby. Uggh, I’m going to be sick.
My son-in-law inquired when we would be able to take the baby to Boston. The team thought maybe in a few days. My daughter said NOW. Daddy and Drake were on their way to Boston via ambulance within the hour. My husband and I drove to Burlington, Vermont which was about 2 ½ hours from our home town to pick up Mommy and her sisters. I had only been back at work a few hours when I left again. Boston was another 3 ½ hours past Vermont.
More testing, more waiting, more unknown. At this point we are starting our second week of December. My daughter wants to know if Drake will be spending his first Christmas in a hospital. I was wondering and begging for this not to be his only Christmas.
Boston doesn’t want to waste any more time testing. They want to start chemo and “see what happens”. So do we. If this ugly tumor grew that big in his short 10 month life, how fast is this growing? This can’t be happening. It is too unreal -feels like sci-fi! They want to do another biopsy of the tumor so they can test different therapy outside the body. Good idea.
This biopsy was a little more evasive. Drake is growing a little weaker every day and he doesn’t bounce back quite so quickly with this procedure. He’s a baby. There is no reason for this. He can’t speak but I know what his eyes are saying.
As I said yesterday, my long story short isn’t working so well. I need another break and you probably do too. We have come to the conclusion that Hope is our only hope.
Toodles - Blog Happy!
” Yesterday I dared to struggle,
Today I dare to win…”
~ Bernadette Devlin
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I Don’t Know Where to Begin
September 1, 2008 by BloggerNewbie
I Don’t Know Where to Begin
September is Childhood Cancer Awareness Month. 
Unfortunately, my family is aware every day of every month. I have thought about this topic for weeks now. How was I going to tell my story? My story is sad, sweet, long, and short all at the same time. This story brings a HUGE lump to my throat, makes me nauseous and makes me cry. I cry with tears of great sorrow and tears of gratitude so big my heart, body and soul can’t hold it all. I guess there is only one way to start – from the beginning.
My daughter has two children; a girl and a boy. She always proudly announces to anyone who will listen that she has a fairy tale life, and she does.
Her daughter is adorable, and as sweet as she is cute. I am really not saying that because she is my grandbaby. Emily is smarter than most adults I know. I cannot begin to describe the wisdom this child has in her little 7 years of life. Most things are just “matter of fact” with her.
Her son is a “tank” and all boy. He leaves a trail wherever he goes. I had three girls so it is a little different with a boy. No one in his life points him towards trucks and not dolls but he somehow instinctively heads towards tractors and motorcycles like they are boy toys! Drake is almost 20 months old and also very smart.
Okay, enough granny bragging. When Drake was 10 months old, our fairy tale life took a drastic, devastating (too many words to describe) turn.
My daughter called one evening to tell me she was taking Drake to the ER because “something wasn’t right”. I was eating dinner and I told her to keep me posted. She takes her kids to the doctors on a semi-monthly basis. In fact, she had taken him to the pediatrician that very day. He was having a little trouble breathing; kind of wheezing and tired a lot. I told my husband that she had called and that I just had a “strange” feeling and I was going to go to the ER also. She’s young and they may just brush her off as being over protective. But if mamma says something isn’t right, then something isn’t right.
X-rays revealed that his left lung was either full or blocked. Did he swallow something? Did he have pneumonia? Our local hospital was not equipped for pediatrics so we were transferred to a larger hospital in our neighboring state of Vermont. By now, it was in the middle of the night.
When we arrived in the ER at the Fletcher Allen Medical Center in Burlington Vermont, we were met by a team of doctors. One of the doctors was an oncologist. I thought that was weird. The kids didn’t pay too much attention. I am sure too focused on the baby. I wondered why an oncologist was coming in? They tested and tested and tested! After a few DAYS of tests and a bunch of what ifs and maybe it’s this or maybe it’s that, we were getting pretty frustrated. We wanted some answers. And again, the oncologist kept coming in, checking on us, popping in to see how we were doing. I wanted to scream and tell her to stop coming in our room. We have enough to worry about without all of the unnecessary people adding to our stress. My son-in-law mentioned something about how we were going to handle everything if it was cancer? I was angry and told him not to say that again. What was wrong with him? (If you say it out loud, it might be true).
I had to call my husband. I wish he would have come with me. I needed a hug. I really needed to cry to someone. I couldn’t cry in front of the kids. (I cry as I write this and remember that awful day). I’m the mama, I need to take care of things. I hadn’t expressed my secret fears to him. Again, I couldn’t say it out loud. So when I told him, “yeah, it’s cancer”, he almost fell over. I forgot that I was secretly and privately anguishing about the ugly word. I asked him to call our family and let them know that we would be away for a little while. We still were yet to find out what kind of ugly cancer was in my granbaby’s little body. This was going to be a long journey of the unknown.
Well we will just hold our breath until we get all the facts. My long story short isn’t working so well. I need a break and you probably do to. “Now What Do We Do?”.
Toodles - Blog Happy!
“Never doubt that a small, group of thoughtful,
committed citizens can change the world.
Indeed, it is the only thing that ever has…”
~ Margaret Mead
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September is Childhood Cancer Awareness Month
August 31, 2008 by BloggerNewbie
Childhood cancer is near and dear to my heart. September 13, 2008 is Childhood Cancer Awareness day. Please post and spread the awareness. Take a peek at my grandson Drake! He was walking for a Cancer relay event. His shirt says ” Cancer can not beat me!” He has gone through more in his short year of life than most people do in a life time.
Franklin P. Jones:
You can learn many things from children. How much patience you have, for instance.
Marian Wright Edelman:
If we don’t stand up for children, then we don’t stand for much.
Toodles - Blog Happy!
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