Team Rachel
  • Home
  • About Rachel
    • Batten Disease FAQ
  • Road Trip 4 A Cure
  • Team Rachel Road Race
    • 2012 Sponsors
      • 2011 Race Sponsors
    • Become a Sponsor
    • Road Race Registration
    • Road Race Volunteers
    • Team Rachel Raffle Prizes
    • Race Media Contact
  • Blog
  • Contact Team Rachel
Home » Bucket List
Aug09 1

Day 6 – Cows and Goats!

Posted by Kat in Bucket List, Vacation

The drive: Today we drove from Lee’s Summit, MO to Pleasanton, KS and back to visit Skyview Farms. They generously invited us to come and milk cows with them. We spent a few hours on their farm and they were absolutely wonderful with Rachel and all of the kids. We got to meet cows, kitties and goats. We all had a great time and crossed “Milk a Cow” off of our Bucket List!

Total miles: 144

Cows!!!

Cows!!!

Cows!!!

Cows!!!

Cows!!!

Cows!!!

Cows!!!

Cows!!!

Cows!!!

Cows!!!

Read More
Aug06 2

Day 5

Posted by Kat in Bucket List, Vacation

The Drive: We’re staying in “Kansas City” for the next few days so we’re not really driving.

We hung out at my brother’s house, went to Target in the morning and swimming in the afternoon. At night we went to the nearby ice cream shop called “Here’s Your Scoop” with my family, Adrian’s family and Sarah’s BFF (who I really like).

PICTURES!

Here's your Scoop!

Here's your Scoop!

Here's your Scoop!

Here's your Scoop!

Here's your Scoop!

Here's your Scoop!

Here's your Scoop!

Here's your Scoop!

Here's your Scoop!

Here's your Scoop!

Read More
Aug06 2

Day 4

Posted by Kat in Bucket List, Life, Memories, Vacation

The Drive: Today we drove from Terre Haute, IN to Lee’s Summit, MO

Total Miles: 405

Today was a bit easier on me to convince the kids that another day in the car was a “good thing.” (Thank you Martha Stewart). At the end of this leg we got to see Adrian, Linda, Sarah, Haley and Abby. (My brother, his wife and daughters).

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

Read More
Aug06 2

Day 3

Posted by Kat in Bucket List, Memories, Vacation

The Drive: Today we drove from Somerset, PA to Terre Haute, IN.

Total Miles: 485

The hotel in Terre Haute was the worst I have EVER stayed in. It was 90 something degrees and too hot to even consider using the outside pool. The IHOP, however, was splendid!

Terre Haute hotel

Terre Haute hotel

Read More
Aug06 1

Day 2

Posted by Kat in Bucket List, Life, Memories, Vacation

The drive: Today we drove from Danbury, CT to Hershey PA and then to Somerset, PA

Total miles: 382

We got up fairly early and bought gas before heading on the road down I-84 and went straight to Hershey Park. After spending about 3.5 hours in the park and having lunch we headed another 2.5 hours to Somerset, PA where we stayed in a hotel for the night.

Hershey Park

Hershey Park

Hershey Park

Hershey Park

Hershey Park

Hershey Park

Hershey Park

Read More
Jul29 4

Camping Test Run

Posted by Kat in Bucket List, Julie, Memories, Rachel

The night before last I put up our new tent so the kids and I could have a dry run for camping. John’s back has been bothering him so we gave him a pass to sleep indoors (the house was 10 feet from our camp site). When me and the kids finally got settled, Rachel decided she had her fill and we got her tucked into bed. London, Boston, Julie and I all survived the dry run! I think if the weather is a little cooler the next time we try and I get Rachel a sleeping mat or something to cushion her, she will stay with us the whole night! Here are some pictures, the last one is my cot (yes, I cheated)….

This is another item on our bucket list and we’re in progress. Rachel has to complete a night with us, preferably at a real camp site and then we can cross it off the list! I’ll probably stop at a KOA site on the way home on our road trip.

Let the record state that it is a royal pain in the ass for one adult to try and put up a tent without the help of another adult. I was ready to pass out and would not have been able to put it up without the help of Rachel (who is very strong) and Julie. Thank you girls!

Camping Dry Run

Camping Dry Run

Camping Dry Run

Camping Dry Run

Camping Dry Run

Camping Dry Run

Camping Dry Run

Camping Dry Run

Camping Dry Run

Camping Dry Run

Camping Dry Run

Read More
Jan24 11

The Bucket List

Posted by Kat in Batten, Bucket List, Colorado, Julie, Kat, Life, London, Maine, Rachel

So if you follow Rachel’s facebook page or know me “in real life” you’ll probably know that the idea of a Bucket List has been the topic of several conversations between me and the kiddos. They don’t understand that this has ANYTHING to do with death so please don’t comment or email me worried that I have a doom and gloom attitude that is negatively affecting them. My positivity is borderline disgusting. LOL

I’ve put “The Bucket List” on the top right of the blog and plan to add many, many more things to the list as the weeks go by. The plan is to take a very long (nearly) cross country trip stretching from Boston up north to Maine and all the way West to Kansas City then Colorado and back. We have free access to several amusement parks through September and I’d like to take advantage of this gift from “Give Kids the World” (the place we stayed in Florida on our Make A Wish trip).

I’m also setting up a FLICKR account to link our pictures from all of these successful missions to show the world that life is too short to wait on the important things in life. Life is too short, people. It’s a fact. Batten Disease is such a shit disease, I refuse to let it steal my Rachel until she has had the chance to use up her body and slides into home base covered in fattening food and exhausted from life.

The more afternoons I can get my children sticky with ice cream this summer, the better! I’ll leave you with a picture from Summer 2009 (the extra 9 year old boy in the picture is my nephew Ryan).

You keep that thumb in the up position, baby. Hold on tight because I’m going to drag you all over this country!!! :)

For the unaware, “The Bucket List” was a movie that came out in 2007. < link to IMDB>

Read More
Jan18 2

Trip to Maine

Posted by Kat in Batten, Boston, Bucket List, John, Julie, Kat, Life, London, Maine, Pictures, Rachel, Vacation

I scooped John and the kids up and took them to Maine for the weekend. We had a great time although I had promised to tray and do some sledding or snow tubing. We met a family of chickens and a herd of alpacas, went swimming and hot tubbing and took the kiddos into a sauna for the first time. We even brought home 3 dozen farm fresh eggs which have already begun the transformation into baked goods. :)

Here are some of the pictures which I will directly share from facebook (you don’t need a facebook account to see ‘em).

http://www.facebook.com/album.php?aid=374918&id=266424125552

We had THE BEST time! Here is my favorite picture of Rachel from the weekend. Just goes to show that you don’t have to see well to have a fun and full life. Experiences like this are more valuable to Rachel than to a sighted child because of her tactile senses.

I think I think I did a sufficient job at flipping Batten Disease off this weekend. Tomorrow morning we’re going ice skating for an hour. Can’t wait! Gotta get them into a swimming pool more often. They love the water (just like their Momma) and love the hottub (just like their Daddy).

Read More
Page 2 of 2«12

Road Trip for Research!

On June 14th, 2012 Rachel (12), Julie (8), London (6) and Boston (5) and I will be headed from Hull MA to Eureka CA and up to Seattle and back to fufill one of our bucket list items. Along the trip we'll hand out flyers and awareness bracelets and try to raise $7206 for Batten Disease Research, $1 per mile. If you would like to assist us in our goal, please click on the link below and donate through paypal.

GOAL: $7206 ($1 per mile)
$226 Raised to date


Tax ID# 45-3078380

Bucket List

Eastcoast / Westcoast Road Trip!
Visit Redwood Forest
Swim in the Pacific Ocean
Meet Izzy and Elly
See Seattle Fish Market
Organize 2nd Batten Road Race
Ride a Camel
Go to England
Visit Niagra Falls
Go to Mall of America
See the Flying W Christmas Show
Be in JNCL Cellcept Drug Trial
Go Kayaking
Spend the weekend on a boat
Organize a Batten Road Race
Go Geocaching
Go to LegoLand
Drive an amphibious vehicle
Ride Codzilla in Boston Harbor
See a N.E. Patriots Game
Go to Santa's Workshop (CO)
Milk a Cow
Go Camping
Go Jet Skiing
Visit top of Pikes Peak
Visit the Royal Gorge
Go on the Cog Railway
Go to Disney World
Visit an Alpaca Farm
Collect Fresh Eggs
Own a Home again
Cruise to Bermuda
Go to Canobie Lake Park
Go Fishing (Rachel)
Ride a Train
Go Lobstering
Go to Santa's Village (NH)
Go to Storyland
Feed Santa's Reindeers

Things that are in progress are in have a * before it. If you think you might be able to help us experience another item on the list, please email me directly. Thank you.

2012 Road Race

2nd Team Rachel Road Race

Date: Sunday, October 28th
Time: 9:00am Race Start
Location: Hull High School
180 Main Street
Hull MA 02045
Stay tuned for more information!
Proceeds will be donated to Batten Disease Research at Massachusetts General Hospital.

2011 ROAD RACE

Goal: $10,000
Raised: $25,000

$250% of goal!
435 Participants

Worth Reading

  • Annette
  • Deleria
  • JJ
  • Melissa
  • Susan

Recent Posts

  • Help Needed!
  • Updated Bucket List
  • We leave in a month!
  • East Coast – West Coast Road Trip for Research!
  • Birthday Card Contest

Site Archives

Recent Comments

  • Janet on East Coast – West Coast Road Trip for Research!
  • Ben Foley on Things are moving along
  • Mel on Things are moving along
  • JJ on Things are moving along
  • Janet on Social media…. Cause for worry?

Boss Hog Info

  • Log in
  • Entries RSS
  • Comments RSS
  • WordPress.org

Recent Comments

  • Janet on East Coast – West Coast Road Trip for Research!
  • Ben Foley on Things are moving along
  • Mel on Things are moving along
  • JJ on Things are moving along
  • Janet on Social media…. Cause for worry?

Tag Cloud

batten disease BDSRA Birthday blind blind child blindness Bucket List cellcept childrens hospital Christmas Colorado cookies Death drama eyes florida Flying W geocaching girl scouts grand mal grand mal seizure grief holly humility jncl Julie key lime pie kids lamictal Life life is good London Rachel retina risperdal road trip santa Sponsors swimming team rachel Terminal Illness Thanksgiving traditions tweets twitter

About Me

TeamRachel aka mrskatvon is both a website to gain public awareness of Juvenile Batten Disease (which affects my oldest daughter) as well as a journal to remember the events in our lives. Rachel was diagnosed with Batten Disease in July 2009 and while we knew something was "not right" we had no idea that such a nightmarish disease existed. There are dozens of nasty, orphan disease which affect people both very young and old. Aside from dealing with the changes of Batten Disease in my daughter, Rachel, I have tasked myself with making life memorable for all of my children to make sure that (at least) 3 of them grow up to be as well adjusted and happy as possible.

Site Archives

© 2011 Kat von Tungeln. All rights reserved.