Monday, September 20, 2010

Maryland Renaissance Festival 2010

Well we go every year - last year Haven was a gypsy on Pirate Weekend. This year we went on Irish Weekend and Haven wanted to go as a princess. So we picked out one of her costumes and got her ready for the festival. This is Haven in front of the British Church.

The blue eyes......I'm a sucker for them! The curls are cool too!

This was a very cool purse that I wanted really bad....but definitely not in my price range!

My beautiful angel.....she was adored by many at the festival. It actually started making us feel weird....at one point it got so crazy when this woman came running up to me out of the middle of nowhere yelling about how beautiful she is and how she looks like an oil painting. Haven was of course embarrassed but it was rather funny. She did look like a little cherub.


Grandpa and Haven on the bridge. We had a great day and enjoyed the music, people watching, archers, and food!!!!!

Saturday painting!!!

Miss Haven wanted to repaint her room and get it all pretty before visitors start coming to see her. So we picked out some paint at Home Depot and dedicated our Saturday to doing her room. First thing to do was to get rid of the dark purple on the wall. This took 3 coats of KILZ - which they have in NO VOC! So I was super happy. AND the paint we got for her room is Martha Stewart Living which is LOW VOC! Again another plus! Especially considering the premium Behr paint has a huge warning: known to cause cancer! Great!!!!


Our plan was to white out the purple and change it to pink...then the wall with the photos on it change to green.......well...

After 3 coats of white we were able to start the pink. The fun stuff because painting white isn't fun!

After about all day and finishing one wall with pink we decided to head out to my favorite place for dinner - Red Robin!

You will have to check back next weekend when we finish the room.....because it's the last weekend before it gets crazy around here! :)

General

First off I'd like to thank all of our family, friends and strangers we have met over the years for supporting our family and learning about our daughter. This disease affects so few but for those that it does affect it hits hard and without care.

Many over the past few years have written to me and to Haven (especially Haven) and have remained loyal to her blog and commented to her and to me through her blog. I do read all of them (even the spam stuff) but not everything is published to Haven's blog as some are personal questions that may come to me. I just want it said that ROHHAD and CANCER are very tough diseases....to have one is enough to destroy your world as you know it.

There was a comment sent to me by an anonymous person stating that one child - out of the 70 somewhat known cases has the worst case in the ENTIRE world. Now this is a blanket statement that I feel had no pertinent reason to be in the "story". Considering you do not know all of the cases in the entire world I'm not sure how you can say this to be a fact. Considering some children have 30 out of 35 of the symptoms and no doctors to help them I can't not understand how you can factualize this. And to be straight out honest......the children with the WORST CASE OF ROHHAD IN THE ENTIRE WORLD.......are the children who have died from this horrible disease.

I am grateful that our doctors for the past 3 1/2 years stopped and listened to us...many families don't have that luxury. We didn't for the first 2 years we asked for help. I am grateful that my husband and I were brave enough to try our treatments with no guarantee...some families aren't offered an option of anything except sit and wait.

Who knows if in 1 month my daughter's ROHHAD will reverse all that we worked for and she suddenly drops....or if in 5 years the chemo that we used comes back to bite us because she now has Leukemia......or if in 20 years she is still stable and having no more issues than she did at age 3. WHO KNOWS.....I would never claim my daughter has the worst case of any disease...I do not need this to exist. I would love to say my daughter is cured...and no longer has a disease. I can say my daughter has the best case of cancer possible...as for ROHHAD no one knows what tomorrow will bring....because no one knows exactly what this disease is or what it can do.

In my heart I cry every day for every child that has passed away from ROHHAD. You are the true heroes and you are our angels. Your parents are our strength because I don't know if I could be that strong.












Wednesday, September 1, 2010

Childhood Cancer Awareness Month - SEPTEMBER

SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH!!!!


My daughter has strength I only wish I had. Now usually I discuss my daughter's other disease, ROHHAD Syndrome, but she was actually diagnosed with two and the other is Ganglioneuroblastoma Cancer.

After over 2 years of asking for a diagnosis we received it in 2007 - December 28th at 7:30pm. It's a phone call you can never forget.

"Mrs. Fowler, your daughter has cancer. You will be contacted by an Oncologist in the next 24 - 48 hours."

Only to find out after visiting many doctors that she actually is diagnosed Ganglioneuroblastoma Cancer and ROHHAD Syndrome. To get hit with one of these is devastating.......but two different life-threatening diseases! How the hell can this happen?

Our daughter underwent a 14 hour surgery to remove a tumor in her abdomen that was wrapped around both the Inferior Vena Cava and Abdominal Aorta....it was pretty close to cutting them off from supplying her body with blood. Two major arteries. During this surgery she also had a cath-o-port put in and a spinal tap with a bone marrow withdrawal.

Some general facts about childhood cancer:
  • The National Cancer Institute’s (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and ALL 12 major groups of pediatric cancers combined received less than 3%.
  • Each day, 46 children are diagnosed with cancer
  • One in 330 children will develop cancer by age 20
  • 35% of children will die from cancer
  • Cancer remains the number one disease killer of children; more than genetic anomalies, cystic fibrosis, and AIDS combined
  • On average a treatment for childhood cancer diagnosis is two years
  • The causes of childhood cancers are largely unknown

Neuroblastoma Cancer Facts:

  • In the United States, about 600 children are diagnosed with neuroblastoma each year
  • Every 16 hours a child with neuroblastoma dies
  • For children aged 1 to 4 years at diagnosis, 5-year survival rate improved from 35% during 1975-84 to 55% during 1985-94. Survival at 5 years from diagnosis was essentially unchanged over these time intervals among infants (83%) and children 5 years or older (40%).

Cancer Research Funding

  • Nationally, childhood cancer is 20x more prevalent than pediatric AIDS.
  • Pediatric AIDS receives 4x the funding that childhood cancer receives.
  • In one month there are 2x as many deaths from childhood cancer as pediatric AIDS for the entire year.