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!