Fun Week with Grandpa and Grandma

Grandma and Grandpa came out to visit for the week from Utah. Haven had a blast visiting with them especially doing her crafts and hours and hours of reading. Each day I think they read at least 1 - 2 hours.

Haven with Grandma and Grandpa

Reading with Grandma....one of Haven's favorites. They did hours and hours......

One of the best games Grandma and Grandpa could've brought to visit. Hangman - Haven contoled the game and made the rules.

Matt's Helpers Foundation sent a huge box of crafts - which gave them even more to do!

This is the witch Grandpa and Haven sewed together for their Halloween crafts.

Haven's googly eyes --- THANK YOU TO MATT'S HELPERS FOUNDATION!


My beautiful angel baby...so innocent

Haven with Grandpa and Grandma with a gift from her new friend Katie. Her little baby green pumpkin is named Princess Randall.



And of course, baby Deezy makes her photo shoot with a little air. She does a super spin when you pull out the measuring tape! Why? We don't know but she loves it!

We had an awesome week that went very fast! Can't wait til they visit again!!! Love you guys!

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.

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.

Starting First Grade

Miss Haven at school ready for her first full day of classes. We're going to try the first week to make sure she can make it an entire day before knowing if we need to adjust her schedule.

But I think she's going to be just fine. Parents aren't allowed to cross a line in to the school so this was as far as dad could go with her. She was off with her roller-back pack. :)

Love her to bits!!!

Ready for School......

Miss Haven went to see her doctors on Monday - had to get one more boost of chemo before starting school. She did great accessing her port and doing her labs.


She slept through most of the dose. Which is good because it's such a long day when she has treatments. They finished around 5pm and I called to see if they wanted to meet and eat somewhere but Miss Haven said she was too tired.

Was a good thing too - both she and I got home and slept until later that evening. :)



Thursday was back to school night. We got to meet Haven's 1st grade teacher, Mrs. Petz. She really likes her teacher's name and said she was really nice. I think Haven likes her desk and purple pencil holder as well. We got to see some of the books they would be working in this year and learn about how the homework will work. Haven is very excited for school to start on Monday.

Haven has really pushed to go full days this year. We talked to the Principal last night and she agreed that Haven can try the full days and see how it goes. I think she is going to have a blast this year. Plus she really wants to be able to be part of the art and music classes.

We have declared tonight a party night - one last movie fest before school starts. So Miss Haven is counting down......

Our Ohio Visit!

One last vacation before Haven headed back to school. I decided we'd join my dad and head to Ohio - leaving Dad and Deezy at home.

Haven is excellent in a car. We packed a bag of crafts for her to do on the drive. She is so good on long drives...mom on the other hand was not! The entire drive I was planning my visit to urgent care! As soon as we arrived to my grandma's I had my aunt take me! I pretty much slept the entire weekend but managed to get a few pictures and did see one of my BFFs from college.

And this is the adorable Chita. She is so sweet and not yippy or snappy like most chihuahuas. I believe her bone is bigger than she is! Haven had a lot of fun with her.

One of Haven's favorite times out - the grocery store! She found a cart that was her size and pushed it around everywhere. I was terrified for any one or thing in front of her!

Pretty much where Chita stayed if Gpa was sitting.

Saturday was a big day. Everyone decided we'd go to this huge Antique place. Haven had a blast - she loves antiques and taught grandpa a little bit about looking at details of the items and checking out each dish. Then she found out they were doing an auction in the back.....she wanted to go so bad. She is holding her auction paper in her hand. I slept in the car for most of this visit....

Chita really wanted to trade Haven stuffed animals....she kept trying to give Haven one of hers in exchange for Haven's Monkey from camp. So while we were out getting dinner we decided Gpa needed to use his skills and win Chita a toy.

Only 2 tries later and wha la.....Chita has a brand new toy.

If you look closely on Haven's shirt you will see her antique pin she got at the antique place....it is two schnauzers - one with floppy ears and the other with pointed ears.


Next big outing was the mall and hitting Build-A-Bear.

Here is Miss Haven giving her bear a bath.

Well I was very sick for the entire visit - which was horrible since I haven't been home in 3 years. But Haven still had a great time and after another long week of hospitals and doctors I'm finally able to function. Very happy to see family after so long. Love you all!

Thanks to Stephy for coming to visit even though I was dying and bringing Miss Haven a gift.

Miss Haven is in chemo today at Hopkins. She was really overdue and we'd been trying to push it as long as we could. She will be very tired today and tomorrow.

She starts 1st grade next Monday - we get to meet her teacher on Thursday.

Home from camp

Well you can see her in the back....waiting. This was the arrival of Miss Haven back to our arms.

She had an amazing time and absolutely loved it. She told us about all the crafts and different foods from each country they celebrated. We heard all about the dance - and yes Haven said she did dance a bit because her nurses were at the dance.

Then we heard about how the boys pranked them and toilet papered their cabin. She thought that was hilarious....but the girls did get the boys back.

Haven's favorite thing - SMORES! And I believe it too --- not kidding --- my daughter came back 5lbs heavier than when she left. Yes a ROHHAD child can gain weight just looking at food...so I can't imagine how many smores she ate. The counselor even said all she talked about in her sleep was smores. So we are back to her diet and getting out and about!

As the end of summer draws near I have decided to go to Ohio with my dad this weekend. Miss Haven will make the journey with us. We should have a nice low-key weekend as long as my dad follows my schedule and doesn't try to slow us down! :) Oh and antique shopping.....I have to make sure he gets to the antique place off the 70 in Ohio....I figure I let him go in and I can nap in the car! :)

We'll share some photos from our Ohio trip --- if you're on FB with Haven and I you will probably see them before anyone else. OH and Haven wants me to tell everyone - if you play Farmville or Frontierville - can you please be her neighbor???

ok....love to all....and to everyone in Ohio --- see you soon! Pennsylvania turn-pike here we come....uuuuggggg

Missing my baby!!!

Well.....I'm missing my baby.

I called the camp twice yesterday and talked to the director both times.

Miss Haven is having a blast!! Probably not missing us much...well maybe she's missing Deezy. But they said she slept well - only a little talking and yelling - had a great time at breakfast. She also has a friend from clinic in her cabin. So they were playing together and signed up for crafts.

I'm very happy she is having such a great time and that this camp even exists! Thanks to Hopkins for making this type of camp possible for kids with cancer. We are more comfortable with letting her go to this camp because it is run by her doctors and nurses and child life specialists. The nurses are there every day and the child life specialists that have helped us through everything. Doctors go out to check on the kids and visit. Most of the kids have to bring extra luggage just for their medications and many get their chemo treatments while at the camp. We are happy Haven is not on chemo anymore and can just enjoy hanging out with all the kids!

We are looking forward to seeing her bus pull up on Saturday and giving her a big hug that we're sure will embarrass her in front of her friends! :)

I have not been able to actually talk to Haven yet but we are 2 nights down.....with 4 more nights to go!


Mom landed in Korea safe and sound - her friend Minnie went with her. So I'm sure they are having a great time too....can't believe they left at the same time!

Camp and Korea

Well.....everyone decided to leave at the same time. This is a photo from our dinner last night before Grandma left for Korea for 3 months and Haven left for camp for a week. We had a great dinner and lots of fun hanging out. Both of them left at 8am this morning!

Here is our beautiful Haven as she received her Cabin number and information for camp today. I was up until 11pm last night packing her huge bag of everything she needed for camp. She was so excited this morning she could barely contain herself. I was already tearing up just signing her in at the desk.

It was about 20 minutes after registration that she realized we did not pack Crazy Feet because he slept with her last night. I could see the panic in her eyes and dad jumped up and took off to Target. He made it back before she got on the bus with a new baby, named Angel, and some PJs for the baby for the PJ breakfast.

This is a picture of Haven with Angel. She got on the bus and sat by the window so I could see her. She sat with a cute girl that happened to be the girl in the pink shirt to the left in this photo. I could see them talking away while I stood outside. I made dad tap her window so she could see that we were waiting and waiving. I believe we waved and blew kisses 5,000 times. Of course, as the bus pulled away I was crying. I cannot believe my baby is on a bus to camp for a week! An ENTIRE week! It has been a very hard day for me. I check my phone every 10 minutes in case she needs me to come get her.

I know she is having a blast --- she learned from another little girl what "SMORES" are....and what a snow cone is. So I'm sure this will be the best week ever for her! :)

Oh....but I MISS MY BABY!!!! It's 8:10 pm and it's been exactly 10 hours since she left. I think I'll go to bed now to make it go faster!!!