Tuesday, August 25, 2009

Hickman Line Removed

Haven did great as usual with her surgery! Her surgeon, Dr. Price, is so cool he let her keep the tubey. He asked her if it was important because it was smelly and yucky. She just looked at him and said...."well, it's important to me". So he cleaned it for her and gave it to her.

Heading into surgery

Haven on her way into surgery!


Monday, August 24, 2009

Haven Signs Her Own Consent Form

Here is a couple of pictures of Haven signing her own form!! She's so


Waiting on her surgeon!!!

Wednesday, August 19, 2009

Photos from Haven's Sake Benefit Ride

Beautiful photo of our girl with a short story of her diagnosis. Tom put on an awesome event!

Check out the trophies! I absolutely love them. Awesome idea......Haven was freaking out after seeing these wanting to know how to get one.

One of my favorite pics! The kids out racing for Haven. The determination on the boy's face in the front is priceless! Just awesome!

Our great friend Mike. Drove out from California by himself to Arizona to help at the booth and join in the race!

Some of the winners out there enjoying their trophies!!!! Congrats guys!!

Our booth volunteers. Kim up front and Zach next to her! Thank you guys so much!!!!

More pictures at Haven's FLICKR site and even more on the EVENT web site!!!

Monday, August 17, 2009

Party Night at the BMT housing

Well Miss Haven earned an ice cream from Cold Stone for her awesomeness at her Sleep Study this weekend. But first we had Coburn's restaurant cater a dinner for all of the families in the BMT housing. So we headed downstairs and met with all the families and had a great Chicken Alfredo and salad. With everyone talking we all thought it would be great to head down to Cold Stone and treat all the kids.

Here is Malcom, Katie, and Haven enjoying their ice cream. Everyone was having a good time but we were missing two more kids. Christian and Marley were still in Stone Cold.

Haven custom made her ice cream with a fat free sweet cream, a small mix of cotton candy ice cream for color, marshmallows, coconut, and a quarter spoon of sprinkles.

Mom and Dad had Starbucks thanks to my awesome gift card from Mason and Julie! :) yummy

Here is the group! All together and all smiles! Front is Malcome, Katie, (back stroller) Marley, Christian, and Miss Haven.

Weather was awesome and we had a great evening. Katie even got Haven talking and tried to get her interactive with the kids. She is better around adults but I was happy she was actually talking with Katie.

Saturday, August 15, 2009

For Haven's Sake - Sunset Time Trial McDowell Park

Last night I drove Kris and Haven down to sleep study at Mt. Washington. This was a slightly different sleep study than previously because Haven had quite a few more wires than normal. They are also monitoring her for seizure activity during her sleep - since this is when her seizures have happened in the past.

Around 10:30 pm she was completely wired up and ready for bed and at about that time the Haven Benefit Ride was taking place in Arizona.

and...WOW....all I can say is TOM IS AMAZING. He has been working hard on this race for Haven and I never ever would've imagined that he could really put on this huge race and event!!! We've already heard some great stories and that the race was amazing.

I have to do a major thank you to TOM, KIM, SARA, and ZACH....they have worked hard to get this going.

Thank you to our very good friend Mike for making the trek from CA to AZ all by himself to help out in the booth and test his skills in the time trial.

ALSO a huge thank you to the companies that joined in and offered prizes and trophies for the race.

When I spoke with Tom last week he said they had received over $4,000 worth of product for the raffle! AMAZING........

We hear the had an absolutely awesome time and through the event Tom learned of two kids out there racing in the event who also have had Neuroblastoma and currently are in remission! SPECIAL CONGRATS TO THE TWO OF YOU!!

Thank you to the below companies!!!

I'm sure once Tom wakes up we'll get some photos of the great time they had out there playing in the desert....oh I wish I was in the desert..........


Friday, August 14, 2009

Feeding the ducks

We've been trying to get Haven out walking 30 minutes each night. Last Friday we took her out to feed the ducks in the bay and to play "I SPY".

The ducks go crazy down there - we'll start with 2 or 3 and all of the sudden we have 50 ducks quacking at her. She just loves it. She sits and names each one and yells at them if they aren't nice to each other. Her throwing is getting much better since working with her weighted balls. She is able to throw the bread out farther now.

While feeding ducks we also count how many doggies we see. She doesn't get to pet them or anything but she does stop to talk to them and ask if they are having a great day.

Wednesday, August 12, 2009

Couple updates:

Sleep Study : August 15th

Surgery: August 24th at 9:15 AM

Thursday, August 6, 2009

Physical Therapy 8-6

Haven did great with PT today. She has been working hard on her exercises lately. We're working on the hips and shoulder regions the most as these are her weakest areas. We also noticed that her left side is not used as much as the right side.

Haven does 1 hour with her physical therapist twice a week and then we keep it up on the other days. She can climb up 1 flight (or two sets of stairs) ok but it really wears her out. She has been doing sit-ups, leg lifts, squat walks, and lots of arm exercises.

I bought her a large exercise ball and a small weight ball last weekend. This weekend we're going to buy her some 1lb dumbbells so it's easier for her to hold. She is required to spend 30 minutes each day kicking and throwing a ball. This wears her out - she will sleep for 3 hours after working out.

I love PT - Haven has shown us that she can do things we never thought she could. She has more energy now and we believe she is starting to feel better about herself. She even went through the house acting like an airplane the other day! WE'VE NEVER SEEN THAT! She doesn't do anything normal kids do so this was a surprise to us.

Once we get her hip looked at and get the ok from docs we'll be able to start riding bikes and doing more impact stuff like running and jumping. Then I can buy her the small workout trampoline - which will help with her knees.

Surgery to remove the Hickman Line

As you know, our lives and schedules change pretty quick. We were going to remove the line and then we weren't.....well.....

I received a phone call on Tuesday night around 7pm from Haven's Oncologist that we were to meet with the surgeon on Wednesday to get the approval for surgery to remove the line and have the surgeon check her over.

Kris and Haven went to the surgeon's office and signed all the paperwork to get that going. Dr. Price told Haven that this had to be the last surgery - he was tired of doing surgeries on her. He was joking with her but not really. I know he does not want her to have any more surgeries....I mean 6 in 1 1/2 years is A LOT!

Her surgery will be at the end of August sometime. Our surgeon is going on vacation for 2 weeks and then we will get the date of the surgery. I am happy to remove this line - it has been nothing but issues. I'll update on that when we have an exact date.

Beautiful girl

We did our nightly walk the other night and Dressy came along. Haven loves to walk on the boardwalk and check out the dogs and ducks. We try to get her to walk for about 30 minutes but out of all of her exercises this seems to be the hardest. She gets really tired after about 5 minutes and her hip starts to bug her.

Well it seems that I haven't updated in a while - I've just been so tired at night and I have had more computer issues than normal.

Let's see - here is what we have so far:

  • Haven has lost 2 pounds in the past 2 1/2 weeks
  • We still are not clear of the C. Diff - she will have another test done tomorrow
  • Blood pressure has slowly been creeping back up over the past few weeks - we are doing multiple checks each day and doctor will discuss with Kris tomorrow
  • Pediatrician called about some notes she has read in Haven's files about her hip - we have been referred back to Orthopedics for a scan of her left hip to ensure it is developing properly
I know we haven't been calling or anything and I have 148 emails in my inbox that I haven't gotten back to we've just been so exhausted trying to make everything work.

Even with all of this Haven is doing pretty well. The other day she was singing this song about "easy living". I asked her what the song was and she told me it's about the stuff she's gonna do when it's easy living because all the doctors are not easy. I can't wait for that day either!!!