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.

Mystery Diagnosis!!!

YEAH!!!! Finally after waiting months for approval from Johns Hopkins PR group we are confirmed to film Haven's segment on Mystery Diagnosis. We're looking at the end of September to do the filming. I have signed all the papers again and am super excited!

We had to wait on an article being written by Haven's doctors about her ROHHAD and Ganglioneuroblastoma Cancer and the "treatments" she did for this extremely rare disease. Finally that was approved and is in publishing! Hopkins contacted the producers at Discovery Health Channel and now I've been contacted by a couple of the great people at Discovery Health.

With papers signed and a date marked on the calendar I am now nervous but truly excited to finally share Haven's story on TV with the world. It's not just about ROHHAD but the long journey it took for us to finally get a diagnosis and all the hell we went through of no one listening to us or believing us that something was horribly wrong with our daughter.

How do you go 2 years begging and pleading for doctors to listen to you when you have physical evidence in your arms and have 3 hospitals and multiple doctors brush you off! I guess everything happens for a reason and I am thankful of the following now after years of hate and anger:

1. The third hospital almost killing my daughter by giving her an anesthesia that she is allergic to and shouldn't be given to a ROHHAD child

2. Moving across country and quitting a job I loved and leaving many of my closest friends behind (I'd do it again for the life of my child)

3. Haven's 45 minute unexplained seizure that ultimately ended up in a special transport to Hopkins and 10 days in the hospital.....2 months of constant testing (by a daughter who can handle millions of needles)

4. An Endocrinologist that dealt with my attitude long enough to find out what was wrong with my daughter and LISTENED to me and my crazy theories.

5. An Oncology department that didn't just treat the current symptoms but jumped out of the box and put their name on the line to defeat symptoms and give my daughter back to me!


It's been almost 5 very long years......but I can truly say in my heart if it weren't for the brave and determined doctors at Hopkins I wouldn't have my daughter today! ALL of Haven's doctors and nurses - you know who you are - you are amazing to us and thank you for loving our daughter like she is your own.

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!!!

Weather is frightful!!!! What a week!

Whew.....we managed to battle the weather and life of the last week!


Haven had an Oncology appointment on Monday and we received some great news!

LOST 3 POUNDS IN THE PAST 7 WEEKS
GREW 5/8 OF AN INCH IN THE PAST 7 WEEKS

Oncology is super excited about Haven progress since treatment last Summer!!! So are we. There are also a few awesome things happening on the PR part of Haven and her battle with Cancer and ROHHAD. Just waiting for the ok from doctors to announce it!

She had an immune test while at Oncology - we won't know about that for another couple of weeks. They skipped chemo last week just to test out her body and see if it has bounced back on it's own.
She heads to Cancer camp for the week starting this coming weekend. We have decided to let her stay the night. We'll see how she does the first night and go from there. She is super excited about it.


Then this past week we have had some horrible weather and a few scary moments of tornado sirens and hiding in the basement! That was a lot of fun. Deezy having heat sickness and Haven constantly covered in heat rashes. A week of over 100 degree temps has just made it unbearable. Storms were awesome though! We had a huge tornado scare...first time I've ever heard the sirens and a very loud warning telling everyone to get to shelter immediately. Luckily we didn't get hit with a tornado but one struck a farm not to far away.


On Sunday Haven and I did our girls day out that we do every other weekend. We went to Bob Evan's and had our yummy breakfast and normally we go shopping afterwards but this Sunday we hung out with Grandma, Grandpa, Aunt Wendy and all the cousins at Chuck-E-Cheese.

Haven playing bowling at Chucky's

Cousin Selena and Aunt Wendy

Crazy cousin Kristanna!

We had a lot of fun and won lots of tickets. We were missing two cousins - Mike and Stryder! Maybe next time.

Delayed updates!!!

Wow...I'm a slacker but I assure you I am extremely busy!!!! We've also just been enjoying living lately and Haven loves to have her foot and leg massages every night! Sometimes I'm massaging her for an hour at a time!

Thank you to everyone for continuing to send her gifts and cards. The above picture was from a girl scout troop and was filled with lots of goodies. Thank you Matt's Helpers Foundation for the gas cards, gifts to Haven, and her Target card. She bought quite a few craft projects with her gift card. Thank you to Casey Cares Foundation for the wonderful Dutch Wonderland passes - we plan to use them when the heat goes away! :)


Well, Miss Haven went to the dentist a few weeks ago and was given an A+ for her teefies. Even her adult molars are already in. However, we seem to be missing the entire front section of teeth! I believe the tooth fairy is now filing bankruptcy - we've lost 5 teeth and 4 were in the last 6 weeks.

Miss Haven is having a very good summer - much better than last year. We love our doctors, nurses, and hospital but it's so much better NOT to be locked up in isolation. We did forgot about an appointment in Oncology last week - she was to get her IVIG. So she is there today - I'm just waiting for news and to hear about her counts. We can tell her counts are low as she has had a couple infections. Seems the toes are coming back to haunt us again.

Miss Lauren has been hanging out with Haven most of July. She comes over 3 times a week. She is moving to Hawaii in August so Haven is getting as much time with her as possible.

Haven goes to cancer camp in 2 weeks. She has asked if she can spend the entire week there and not come home at night. This makes me very nervous but if she was going to stay over night with anyone besides mom and dad who better than her nurses and doctors and kids who are just like her. We are still deciding what we want to do. Not like we wouldn't go pick her up at 2am if we received a phone call.

Then shortly after that Haven will begin 1st grade. This will be a big change for her. We are going to have her go a full day - 8:30 until 3:45. No nap and minimal snacks....she may panic at first. But again we are less than a football field away from the school so it's easy to go grab her.

She has Endo and Pulmonary coming up before school starts and one more sleep study. I am fairly certain all will be good news. Since the chemo last year we have not reversed back to the bad side....everything just keeps getting better. It's a slow process but a good one. I'm very happy we took the chance and trusted our doctors....Haven is such a different child now.


Love to all - will update with anything from Oncology! OH we have lots of new ROHHAD friends out there in the world. I will be updating the Friends of Haven blog soon!