Thursday, April 29, 2010

Her first school awards

Miss Haven came home with the biggest smiles....she got two awards! One of them came with 10 free tokens to Chuck E Cheese! She is doing very well at school and is loving it. She has three friends Gabby, Abby, and Belle. She talks about them all the time. She has Miss Lydia on Tuesday and Thursday afternoons - which is going very well. If she's not at school then she's napping. It really wears her out.

She has hinted to her dad that she wants to stay at school all day....and told him she was upset with me because she knew I'd never let her stay at school all day. So she and I had a nice talk and I asked her what she would like to do and if she would like me to talk to her teachers. But that she had to pinky promise not to eat the food there....she ultimately decided that maybe she wasn't ready yet. She still has to take her naps - her sleep walking is insane. So she wants to wait a few more weeks before trying.

Last night her sleep walking was going strong until 2am....luckily I had the remainder of a 2 week long headache to fight and was already up. I think her mind is more active now because she is in school...just doesn't like to calm down when she sleeps.

Other than that she is doing great --- she walks to and from school every day and loves to go out at recess. The teacher did mention that Haven is pretty standoffish towards the kids and likes to sit back and observe. We knew this is what it would be. She will get used to soon.....I know she is already asking if kids can come over to play.

Thursday, April 22, 2010


Miss Haven has been doing awesome at school this week. This is her first full week so we weren't sure how tired she'd be. She loves recess and has a new little friend named Gabby. They have traded friendship bracelets. I think she's happy to get 2 hours away from boring dad each day. It drives me crazy but it makes me happy too.....this kid LOVES homework more than anything. As soon as I walk in the door she has it ready to start working on.

Last night I took her to get her nails done for school. We've noticed that since starting school Haven has a lot more smiles and laughs at night and is a bit more excited about everything. Definitely makes it easier for me to let her out of our sight.

Haven did get to talk to her grandma and grandpa in Utah over Skype. She liked that a lot. Anything on the computer or stealing my phone to text she is in to. So if I have your number and you aware it may be Haven on the other line!

Sunday, April 18, 2010

Haven's first partial week of school!

My baby is loving school......I still worry about her constantly there. She told me she hasn't made any friends yet but she's only been there a couple of days. I was so excited last week as the teachers told her dad Haven was playing at recess and actually tried to jump rope!

I received some pictures that her teacher took of Haven on the playground! They are awesome. I'm going to scan them in so everyone can see them but we are super happy with how she is doing so far.

We were concerned last week on Thursday and thought we were already going to have to call the school and she was going to miss a day. We got up at 6:30 am and Haven was wandering around stumbling. Instantly we knew she was sleep walking. She had no focus in her eyes and slurring her words. She just kept talking about school and that she had to go. We knew we had to get her back in bed and try to get her back in to a deep sleep. It's the only way to bring her out of this. We've never had a deadline though to get her back to sleep and then back awake. I had to leave around 7:30am and finally she was in her bed snoring. I got a call around 7:45 that she was awake and back to normal. It only takes about 15 - 20 minutes to get her back down and out of it that she pops back up. I was very happy she was able to get to school.

I know she wouldn't have been happy to have to call and say she couldn't come to school because she was sleep walking.

She had a day of treatments last week but it didn't stop her on Thursday. If she was tired I don't think she was going to tell anyone. This will be her first full week of school and I hope she can make it through the week and hopefully her mind will start getting tired that she will sleep better.

Thursday, April 15, 2010

My Wish - ROHHAD

There is one thing I wish for: I would like to meet someone with ROHHAD over the age of 15! I want to talk to an adult with ROHHAD - I want to know what life it like after age 15. We can't find anyone over 15 and neither can our doctors. So what happens after that????????

After 45 years of a disease that has only claimed 50 or so kids --- you'd think you'd hear of one making it past 15 and at least a doctor could find out how they are living now.

Wednesday, April 14, 2010

IVIG and realizing normal doesn't mean normal

Miss Haven had IVIG today. She was at the hospital and hooked up by 9am. Some reason this dose really wore her out. She slept most of the visit at the hospital. But she did a great job with her port.

We did talk to the doctor about some of our concerns and although everything is going well with Haven and her treatments have worked amazingly Dad and I are still stuck with this number in our head that one of Haven's doctors threw out there. Age 7 - the number given due to elimination of symptoms that Haven will stop breathing on her own. With only 8 months to go we are more and more nervous. But then we were reminded yesterday - this age was given due to her symptoms at the time and average age of onset of respiratory failure and it was BEFORE she did any treatments. They have hope that this has helped her and she won't go in to respiratory failure. So this helped to remind us to let it go to the back of our heads and let her live life.

We had her set up to skype with her grandpa in Utah but with chemo and homework she passed out. We barely made it through homework with her eyes open.

Something that made me a bit sad and made me realize that our version of "normal" really isn't normal. Haven had her first day of school on Tuesday and although she had fun she wasn't very comfortable with the kids. It will take time. But that evening Haven came to me all excited and saying how she couldn't wait to go to chemo and see all her nurses and doctors and friends. That she missed being at chemo. This is Haven's comfort zone and this is what she knows as normal.

I also made a scrapbook for her school that from our "normal" point of view it's cute and sweet and highlights what she has gone through. But I guess when you are a teacher that is going to present it to a class of kids it's a bit much and not normal. But I think this is dad and my warped sense of normal too.

It is hard for a person that hasn't dealt with any of this to understand a family that has or is going through this and what they consider normal. But I don't think we comprehend what life is supposed to be like when you're normal either. And that's just fine with us.

Tuesday, April 13, 2010

First Day of School

Here is Miss Haven on her first day of Kindergarten! If you look close enough you can see the school in the background.

I think she was more nervous than she thought she was going to be. Dad was excited to pick her up at 11am. I guess he was sitting and watching the clock with his phone next to him. We asked her how her day was and I'm not sure what she expected. It will take her a few days of observing the other kids. She said it was ok.

I think she will be better once she gets used to being around kids a little bit. It's been years since she's been around that many healthy kids running and playing.

she will IVIG tomorrow for the day and then back to school on Thursday from 8:30 - 11. I'm very happy for the short time - I think it will take her a bit of time to understand it and to feel comfortable around the other kids. She is with Miss Lydia this afternoon. I told Dad to make sure she worked on her numbers and money and I will take the words and reading tonight. What I don't want is Haven acting like she doesn't know something when I know she does.

I'm very happy she came home with a smile. Everyone at the school has been extremely helpful and it's nice to know they all know her and know a bit about her.

Whew...we made it through the first day away from home for a couple of hours.....

Thursday, April 8, 2010



Haven's stage of cancer is noted to have a 70 - 90% five year survival rate.

There are less than 5 children out of 1,000,000 children born who have Ganglioneuroblastoma Cancer.

Well it's been exactly 2 years today since Haven received her first dose of chemotherapy - RITUXIMAB. She began with about 2 months of chemo 4 days a week that tapered over the next year.

Exactly 1 year ago Haven began her 5 years to become cancer free!!!! So in April 2014 we will have a huge party at the house as Haven marks her 5 years!!!!

A few updates- School

A few updates to note:

Next update is School. I met with about 12 people right before Easter at the school, including Haven's doctors and nurses. We discussed all the needs for Haven to attend school and what the school would require from the doctors. Happy to report that Haven will begin school on Monday, April 12th. She will only attend school from 8:30 - 11:00 am. Kindergarten is normally a full day (8:30 - 3:45). But will start out with a modified schedule probably through the end of the year. She will then attend graduation from Kindergarten in June! She is pretty excited but at the same time very very nervous. She will still have home care teaching her twice a week for 3 hours in the after noon.

This weekend we're going to work on her scrapbook to take to the school. She wants to show the kids where she's been the past few years and teach them about her treatments.

Lots of love to all!!!!

Wednesday, April 7, 2010


Haven started Easter morning off at 7am and more excitement than at Christmas. She loves the Easter bunny and hunting the eggs....We set out "Skittles" the night before for the bunny. Some reason the "bunny" likes Skittles!

After a quick wake up to Haven already dressed for the day we set out to find the eggs that the bunny had left.

First stop - the Peach Tree.....A very excited Haven finds her first eggs of jelly beans.

Next we headed to Grandpa and Grandma's yard - which was filled with eggs and a basket of goodies. Seems the bunny left Alice in Wonderland the Un-Anniversary edition and eggs on their porch for Haven.

More eggs surrounding the porch at G&G's house.

Seems to be a secret egg behind Haven......she finally found that one around 6pm that evening!

Deezy also had a great Easter. She got a basket from the bunny as well - it had a large stuffed animal "Flea" in it that said Bite Me on it and a box of puppy treats.

We had a wonderful dinner at G&G's --- I requested a big brown sugar covered ham for Easter and my birthday. We celebrated it all together and it was YUMMY!

Thank you everyone for the cards and boxes of Easter presents for Miss Haven.....Deezy even got a new necklace from Gpa B-Off and Gma Sing! She loves it!

All of my friends that sent cards to Haven - thank you very much!!! Love to all!!!

Friends Of Haven

I posted earlier that I was working on a friends of Haven section! I have many of them but of course not all of them! You can check them out at the right side of the screen or click the links below to go to their specific section.

Sophia Adamo

Jessica Magnus


Mason Byrom

Charlize Joliat

Jessica Haight


Niketa Brown



Josh Wooten

Message from Haven: We love you all! Thank you for your pictures and stories!

Saturday, April 3, 2010

Spring time

Haven has destroyed my sleep for the past 4 weeks and the last week was the worst. I probably averaged 3 hours a night and then off to work in the morning! Some reason we've had a lot of sleep walking this week. Must be the I haven't been able to update until today. I'm finally caught up on sleep - here are a few photos from last weekend....our first warm weekend! :)

Miss Haven bought some bowls from Deezy. So she painted them up to give her a custom made dish.

Stryder came to visit last weekend. This was the first time I've gotten Haven out to play and kick a ball. It was a little difficult to get her to do it but after a bit of convincing she was out there kicking and throwing the balls. Stryder had his own game going --- he became a soccer monster! :)

Here they are running around with Grandpa. Deezy has a blast chasing everyone around the yards.

So cute...I love seeing them all out playing.

Aunt Katie and Haven working on their eggs. These two had a blast coloring eggs.....Stryder did one egg and decided it was soccer time again.

Adding the finishing touches to her eggs.

Finally able to get outside and work on her pottery that Aunt Katie and Stryder got her for Christmas. Now to see what we can get in to today.......