Spring is here

A clear sign that spring is here!!! Big wolf spiders invading! This was at my front door tonight. I haven't seen one this big in about 2 1/2 years.....the last time I saw one it was in Haven's bed at the foot. Yes --- horrible! She slept in our room for about 6 months after that.

We've also had some crazy weather around here - which I know other parts of the country are getting hit with the same thing! The past few days have been so cold (50's or so) and very windy and then today hit 80 degrees and tomorrow is supposed to be back down to 60 degrees. Should bring around a good bout of storms! So I'm very excited about that. We had to break down tonight and turn the air on....not ready for the 100 degree days coming soon.

Haven has been doing great. She was supposed to go in to Endo today but we had something come up that she couldn't get in. I have rescheduled her appointment. I really want to get the bone age x-ray done to check her growth. She has a big test tomorrow in math so she went to bed early tonight and wants to have double the blueberries tomorrow - as she read that blueberries make you the smartest kid in class. She requires them every morning for breakfast.

She is now reading full chapter books and spent 5 hours on Saturday reading...didn't matter if we were in the car or wherever...she kept on reading. She reads everything now.....she is amazing. She got her first Diary of a Wimpy Kid book and wants to get some Babysitter Club books. Luckily Deezy likes to lay on the couch and listen to her read because she reads to Deez all the time. :)

Johns Hopkins / MIX 106.5 Radiothon

WOW!!! We got our card from Hopkins thanking us for being part of the 2011 Radiothon. We're so happy to be able to do this. We've met so many families being part of the Johns Hopkins family for almost 4 years.

You can check out all the 2011 kids - HERE.

Thank you to every one that donated and especially our Haven readers. Total Radiothon dollars raised this year was $850,000. WAY COOL!!!!!


Just in case you don't have time to click the link above and read about the Radiothon and how much it made I thought I'd share a snipit from Hopkins web site:

With support from the Children's Miracle Network (CMN), the MIX 106.5 Radiothon has raised more than $13.1 million since 1989 for Hopkins Children’s, with a record $1.1 million raised in 2008. Hopkins Children’s is a member of CMN, an organization dedicated to helping raise funds and awareness for 170 children's hospitals throughout North America.


Your donations are much appreciated!!!

Miss Haven....doing great!

Well we've been laying low for a while now....sorry. I've just been tired and working and Haven has been doing awesome. She is amazingly reading chapter books now and we bought her a Diary of a Wimpy Kid book....so far she is doing great reading it and loves it. So she is looking at other chapter books and picked up Silverlicious at the school book fair. I never knew I'd have a kid that loves to read so much....considering I'll wait for the Silverlicious movie before reading the book. She gets that from her dad!

She got a cute package from her friend Shirley - which had a cute little kitten in it. As you can see above.

Haven had IVIG on Monday. We are excited to report that her counts are AWESOME!!!! She was having to go in every 6 weeks since they dropped in November. This time she had her labs done before treatment and they came back all normal. So her next treatment was pushed out until 8 weeks instead of 6 weeks. She will still need to go in every 4 weeks to have her port flushed but at least we're starting to move the treatments out.

We are currently setting up an appointment with Kennedy Krieger Institute to have her evaluated. She hasn't been there in about a year.

She is also set to go in to Endocrine on April 11 for her check up. My concern here is growth but as long as she is still growing - even if it's at 5% - they will not put her on growth hormones.

Our ROHHAD world

While the world keeps turning out there in ROHHAD developments we have stayed on the quieter side lately. We know approximately 38 families now with a child with ROHHAD - ranging from early 20's to 3 years old. All very similar yet different symptoms. It's interesting to learn about each child because we are all hit with varying symptoms at different ages and stages.

We are heading back in to Oncology next week for another round of IVIG and then we are back in with Endocrine after that. I'm not sure where Haven's counts are at this point - I know we tried to extend her IVIG visits from every 6 weeks to every 12 weeks and that didn't work out very well. So we are still on the every 6 weeks schedule. There are two other important topics we are bringing to discuss - Haven's height/growth issues and finally breaking down to go in to meet with Kennedy Krieger Institute. They are internationally known and well respected in the medical community. We just never had the mental capacity to add more to our schedule when we were first asked to start going over 2 years ago. It's a lot of work to get an appointment and we should definitely take advantage of our doctors being able to get Haven in there.

Other than that Haven is doing well. She has excellent grades at school and is a good little helper. Her only issue is that she likes to be the boss.....we are working on that! ;) She is still doing her adaptive PE class to help with balance, core, and strength. She is learning to go up the stairs with both legs instead of just the right leg. We still have lots of issues with that, as well as, fear of getting in to a car. I know........it gives me a headache every time we have to get in a vehicle.

Well - I guess I haven't taken any photos in the past few weeks....at least not anything cool. Haven took this wonderful photo - I thought I'd share it. Can you guess what it is?


I would also like to invite everyone to read up on Haven's friends. I posted a note about Denika from Newfoundland in there and have another coming up about our wonderful friend in the UK - Jessica! You can find this site at: Friends Of Haven -- see below for a peek at Denika's story:


Denika is a beautiful girl we met almost 2 years ago now. Amazing to think back when first meeting and mentally review everything you have gone through together. She lives in Newfoundland and we have been friends pretty much since she was diagnosed. Her mom found me through Haven's web site. At the time she had just had the same surgery Haven did to remove her Ganglioneuroblastoma Tumor and was officially diagnosed with ROHHAD Syndrome. She then went on to Sick Kids in Toronto where I was contacted by an Endocrine doctor that wanted more information about my child. I put her in contact with our doctors immediately and asked them to help this little girl. Our doctors are so awesome they immediately took it on to work with her - they contacted me for permission to discuss Haven and off they went. Denika slowly began to follow Haven's treatments and what she had started with. Then suddenly Denika was found to have a second Ganglioneuroblastoma Tumor - this one in her chest. I couldn't believe it. Still Denika has battled on.........



Oh yea.....what was that picture? It is a picture of Deezy wearing Haven's headband....obviously the dog was in motion to run away! :)

Whew.....long week and slow weekend

Gotta love my girls....here they are relaxing. Deezy is such a princess when she's with Haven. She is so spoiled. This is the two of them watching movies. I was deadly sick all last week and barely moving so it was fitting that they wanted to be lazy! Haven decided we'd watch Lord of the Rings all weekend. Sunday it rained all day and night but I guess that's better than our friends up north that were hit with 20" of snow! :)


Starting Saturday off right! :) Miss Haven knows how to get her motor going on an early weekend. She and her dad spent the day on Saturday cleaning up the house and taking junk to the dump. We are going to give her the bigger room upstairs now since she has more stuff and another machine to add to her decor. We made a small dent in the pink room - it will probably take a week or two before we can get her in there. That room became overflow and storage! :)

Haven meets Sophia.......

Sophia was diagnosed shortly after Haven received her official diagnosis - although Haven's doctors were secretly figuring it out a year before! Finally almost 2 years later the girls get to meet! Thank you to Maureen for traveling down from Massachusetts.

We went out to dinner on Friday night - above is Mackenzie, Sophia, and Miss Haven! This picture definitely showed me how small my girl is - She is a year older than Sophia and about a foot shorter!

Mackenzie made Haven a beautiful note and they brought her way too many presents!!!

The next day they came over and enjoyed a day of Wii!

Hanging out at Haven's grandparent's house for the day!

Double sided hug.....Not sure Haven knew what to make the girls! :) They love to hug....

Trying hard to get my girl to goof around.....Sophia and Mackenzie are PROS!!!!! :)



Love it!!!

The girls had an awesome time and we really enjoyed them coming down for the weekend. Can't wait for the next visit this summer.....maybe I can even get up there some time!!! Love you guys - great visit!!!

New Children's Hospital at Johns Hopkins

READ ABOUT HAVEN ON THE RADIO STATION WEB SITE
AND
HEAR OUR WONDERFUL INTERVIEW

This photo was taken from the Mix106.5 morning crew Facebook page. I wish I could've gotten over to Hopkins to see them but Haven didn't have any appointments this week. If you live in MD and have been following along the radio station has been doing a 3 day radiothon at the hospital. They have spent lots of time with the kids in the Children's section and shared lots of stories with everyone. I started listening to this station when we moved her in 2007 and my first radiothon was in 2008 - only then I didn't pay attention because we were living at Hopkins at the time. Haven had just gone through a 14 hour surgery and was about to start a multiple type chemotherapy regiment for her cancer. Then we spent the next 2 full years living at Hopkins testing different chemos for ROHHAD until we finally figured out what was working.

I love the stories of the other children and it is true - you do become a family at Hopkins....not just a patient with a fast food number! And then sometimes when you've lived there as much as we have it becomes the norm and what used to be the norm isn't as comfortable anymore. A huge example was when we had to rush Haven in to the ER about two weeks ago. We realized that sitting there at her bedside while she was getting wired up and port accessed that we were feeling at home. As you can imagine - Haven's Oncologist is not happy that we feel this way and that's what he has worked so hard to get away from. He wants all of us out of the patient mind set....but after this long it's become our home.

We will probably forever live in MD and this is because we just can't imagine leaving Hopkins or Haven's doctors. We trust them with our daughter's life and you can't give anyone more trust than that.

RADIO INTERVIEW:

Above is the concept of the new Children's Hospital at Johns Hopkins! You can check out the rest at the Johns Hopkins web site by clicking the link and watching the video. I remember when we first started coming to Hopkins it was just a pile of metal.....we can't wait to see the new building and share it with all of you!

Haven's Mysterious Condition Identified as ROHHAD

READ ABOUT HAVEN ON HOPKINS WEB SITE!!!! BELOW IS A CLIP --- CLICK HERE FOR THE COMPLETE ARTICLE!!!

Haven Fowler was born a healthy baby. She remained so until the age of two and a half when she began to gain weight very rapidly, gaining 40 pounds over eight months. She also started having unusual neurological symptoms, including hallucinations, sleep-eating and sleepwalking, irritability and profuse sweating.

Month after month, Haven’s parents took her from doctor to doctor, each one increasingly bewildered by her mysterious symptoms and unable to find an answer. Finally, the Fowlers — then living in California — were told that if they wanted answers, they needed to go to Johns Hopkins. And so they did. About three weeks after her cross-country trip to Baltimore, Haven suffered a serious seizure, which landed her at Hopkins Children’s, where the mystery of her condition eventually would be solved.................................... READ MORE!!

WHOO HOOO - Hopkins Caring for Kids

THANK YOU TO EVERYONE........PLEASE PASS THIS LINK ALONG SO MORE CAN DONATE....EVERY PENNY COUNTS! SO DON'T SAY IT'S NOT MUCH, WHEN IT'S HELPING CHILDREN, IT'S EVERYTHING!!!

JUST A NOTE AGAIN ---- THIS IS TAX DEDUCTIBLE AND YOU WILL GET AN EMAIL FOR THE IRS TO DEDUCT YOUR DONATION!!!


Check it out from Hopkins site!!!! I know the radiothon hasn't started yet but it's good to see our ranking!!

Hopkins Children’s Caring for Kids

I want to thank everyone who has donated so far to Johns Hopkins Children Center. An amazing hospital helping so many kids worldwide. I don't know all the doctors in the Children's wing but I know our's are AMAZING!




Check out our counter now - and we still have two weeks to continue raising money! Again - anything helps - even if you only have $1.00!!!!

A day at the ER

We had a bit of a scare yesterday when I received a phone call from Haven's dad that she had complained of chest pains two different times at school. She didn't want to come home but instead wanted me to bring her some medicine to make it stop. I don't have medicine for chest pains......

What is more important about the chest pains is that Haven doesn't feel pain - so when she does we know it's serious. I called her Pediatrician who told us that she wanted Haven in the ER asap to have an EKG. She didn't have the equipment at her practice.

PS: I will never go to an ER for Haven without an appointment first. It is so easy to sit there for the 7 - 8 hours if you aren't wasting 3 - 4 hours in the waiting room!

Haven's pediatrician called the ER and I sent an email to her Oncology doctor. He also called the ER to let them know we were coming. We got there and her room was ready and all the doctors were up to speed on the Neuroblastoma and ROHHAD.

This is Haven with a nurse she used to have at her Peds office. They hadn't seen each other since 2009 when her nurse was transferred to the Children's ER at Hopkins. It was so awesome to see her!

Haven had the EKG as soon as we got in to the room. Then they hooked her up to the heart and respiratory monitors. I requested a pulse ox to watch her.

Then it was off to chest x-ray.

She has a beautiful heart and the lungs look great. I am very sure her inhalers are working. The doctor at the ER let me see the x-rays from January 3rd and compare. These look much better.

Next it was time for labs. Haven always monitors the nurses when they are getting the port supplies out. She makes sure they have the correct needle and vials before putting it in to her chest. Unfortunately, no one accesses her port as good as her nurse Katie. But she did well.

Time for the flushing. Haven flushed it and put the Heparin in all by herself. She likes to do it because if the nurse puts it in too fast she can taste it and according to her it's disgusting!

Her sodium levels and cardiac enzymes came back great.

In the end everything tested out fine. Obviously with ROHHAD and her chemo it's not good to tempt fate with the heart and a cardiac arrest is very possible in our children. The fact that Haven felt the pain is more important - since she just doesn't feel it like a normal person.

She will be seen back in Cardiology next week for another EKG and the heart halter again. She will also be back in chemo next week and have a thorough exam with her Oncologist.

To end out the long day and evening Haven came home to wiggling her tooth. Within 30 minutes of wiggling and pulling the tooth was out and she was ready for bed! Tooth fairy was put to work!

Somethings are perfect when you don't feel any pain!