Archive for the ‘News’ Category

Park Cleaning Tomorrow (8/21/10)

Friday, August 20th, 2010

Hello friends!

Tomorrow (Saturday, 8/21) will be out at Lawrence’s South Park (12th and Mass St) cleaning. We plan to start at 9 am and be done in an hour. We will provide gloves, bags and lots of motivation!

Parking is on the northeast side of the park (on E North Park St). Parking is metered, so don’t forget. We’ll bring coins to share.

This year’s parking cleaning series has gone great and we received our first compliment from a patron of the park last week that said “Thank you for cleaning the park”. Awesome! We all enjoy giving back to Lawrence’s community and helped make South Park beautiful.

If you don’t know where it’s at, when you arrive, we’ll show you where Isabelle’s Park Bench was installed and where the memorial trees were planted.

Reminder: this year, we’ll be cleaning every 3rd Saturday of the month from April through October.

We hope to see you there!

Warmest regards,

Chris & Amanda Ellis

Memorial Golf Classic A Big Success

Thursday, July 29th, 2010

We have great news to share! On June 16th, we hosted our first Isabelle Ellis Memorial Golf Classic. Partnering with Gift Of Life ( we hosted almost 40 golfers while the Dinner & Silent Auction Event hosted that plus about 40 more.

The day started off with Registration and Kick-Off from 12-1 pm. We got to see some new faces and we introduced them to the tournament and the cause. Participants enjoyed a nice box lunch from Planet Sub as they prepared for the tee-off. Keith and I made some announcements as registrants loaded up their golf carts.

Everyone enjoyed the course and the sport for the afternoon. Participants competed in many contests on various holes, including a Hole-In-One prize for $10,000. Unfortunately, nobody made a hole-in-one, but there were winners to the other contests. As the afternoon carried on, clouds and sounds of thunder approached. We were ushered off the course by a cool summer rain around 6 pm. The timing was actually fortuitous because we were able to start dinner on time! It was a very heavy rain, too, so it was good to get folks off the course.

The dinner and silent auction kicked off with speeches given by the MC Andy Heath and the founders of the Gift Of Life charity (Kim and Nate Harbur). Keith Anderson, the Executive Director for Gift Of Life, also gave out some door prizes! Our great friend Dave Fischbach also gave a speech about how he’s been moved by this event and the people involved. Amanda and I were then invited up by Linda Cook (one of the members of the Gift Of Life board) and we were presented with a check, which will go towards Isabelle’s Heart Of a Princess, Eternally Memorial Scholarship and Care Package Programs.

Participants enjoyed bidding on many wonderful silent auctions items that were donated by very generous sponsors. The meal was delicious and we were so pleased that Deer Creek was able to accommodate all our needs.

About the time the event was wrapping up and people were leaving, I overheard from my wife that there was a rainbow outside. At first, I didn’t think much of it because I knew it had rained and I pictured a small rainbow, partially visible, which is what we typically see. Then they said again “you ought to go see it”. I decided to go and look. When I saw it, I was stricken with excitement. It was a HUGE, brilliant, double-rainbow. The likes of which I have never seen before. I immediately went to get Kim and explain to her the significance of the rainbow to us. If you recall from our story, we saw a series of rainbows around the time when we were trying to decide to take Isabelle to the transplant center in St Louis. When we arrived at St Louis, we looked out the window and saw a perfect view of the Arch as it was illuminated by a setting sun. Some say coincidence, but you had to have lived it. Rainbows in October are extremely rare in Kansas and the view of the Arch was unique on the Cardiac Unit we were on.

We rallied the rest of the party to join us in witnessing the beauty of the double-rainbow. It was extremely sharp in color and brilliance. It shown for well over 30 minutes, which is also rare. The rainbow was the talk of the town for days to come. A rainbow was seen in quite a few cities that day, from Kansas City to Topeka. It seemed to be a regional celebration and for some, it was so much more. To us, it was a reminder that what we were doing was right and that Isabelle did not leave us without purpose. Her story now lives on and her message is spreading like rainbows across the land.

Thanks to all of those who participated in this wonderful event. We had over 20 volunteers who helped us make this event a success and we had folks who donated money but could not attend. The event was so successful that we’ll be doing it again next year! So, be on the look-out for opportunities to be a part of this event in 2011!

Thank you!

Sincerely, Chris & Amanda Ellis

Don’t Forget To Register (Deadline)

Tuesday, June 1st, 2010

Hello friends!

Our deadline for registration for the Golf, Dinner and Silent Auction event in two weeks is today (June 1st).

If you play golf and have a team, then contact the Gift of Life office asap at If you don’t have a full team, no problem, because you can still register and we can help you find more players.

If you don’t play golf we have something for you! The dinner and silent auction event will be a great time for anyone who doesn’t play golf, but wants to be a part of this wonderful event. (Golfers automatically get registered for the dinner and silent auction).

Last week we added a $25,000 Hole-In-One prize to the tournament, so don’t miss out!

Register today by printing and completing this form here.

If you cannot print the form, just give the Gift of Life office a call and they’ll help you get registered. To contact the office, go to this site:

We look forward to seeing you there!

Thank you!!

Isabelle’s Daddy and Mommy

Reminder: Golf Tournament Fund Raiser June 16th

Monday, May 24th, 2010

Good evening!

This is a reminder that we’ll be hosting the first ever Isabelle Ellis Memorial Golf Tournament in just 3 weeks! Mark your calendars, June 16th is the date.

This is such an amazing event and you won’t want to miss out. If you play golf or not, there’s something for you. Here’s the layout:

What: Isabelle Ellis Memorial Golf Classic

Where: Deer Creek Golf Course (133rd & Metcalf, Overland Park, KS)

When: Registration (12:30 to 1 pm), Golf (1 to 5 pm), Silent Auction & Dinner Event (5 to 8 pm)

If you play Golf, then you can register up to four players per team. Registering for golf gets you lunch, 18 holes of golf, contest and prize opportunities and dinner. Registering for the dinner will give you a chance to bid on many great silent auction items and a great dinner with us! Something for everybody. Kids under 12 eat for half price, under 2 are free.

Why: The Gift of Life charity and the Heart Of a Princess Eternally (HOPE) charity seek to raise awareness about the critical need for organ and tissue donation. This event will raise awareness and funds that will directly benefit our local community through programs and through gift packages, which are sent to children in critical care.

ALSO: we are still accepting sponsorship opportunities and we welcome anyone who is interested in donating something for prizes and silent auction items. It could be a great advertising opportunity for a local business!

You can see the flyer we’re sending out here.

Potential sponsors can contact me for more details.

If you’d like to read about the silent auction items, click here.

If you’d like to volunteer, please contact me. If you’d just like to make a donation to this wonderful event, please contact the Gift of Life office and they will be able to accept your contribution.

All donations are tax-deductable.

Thank you so much for your wonderful support. We’re so excited about this event and we know it will be such a great time for such a great cause!

Warmest regards,

Chris & Amanda Ellis

May Park Cleaning Cancelled

Friday, May 21st, 2010

Hello friends,

We are cancelling the Lawrence South Park cleaning for May. While it’s the first nice day in a LONG time, it’s also a weekend that another group is cleaning the park. So, please consider coming with us in June to clean the park. We’ll post that information when the time gets nearer.


Great, great success lately

Monday, May 17th, 2010

Hello friends,

I’m behind on my writing so this update is going to be full. There is a lot going on and we are so thankful to share these updates with you.

First, the first park cleaning on 4/17 was a great success. We had several volunteers (regulars) and we cleaned the park just in time for the Lawrence Earth Day celebration going on there in the park. On a funny side note, several people thought we were just regulars cleaning the park. It was great timing but I almost wish I we had some t-shirts to wear while cleaning the park. That’s a thought for the future. May’s park cleaning has been postponed until this weekend (Saturday at 9:30 am at South Park). We know there are a lot of activities going on this coming weekend (Graduations, B-day etc), but we hope to be done in an hour.

Next, we attended Cooper’s Cause Bowl-A-Thon on 4/10. It was a great time and for a great cause. Cooper was born with a complex heart defect and required difficult surgeries to treat. His parents have done a great job raising awareness through their Lawrence-based grassroots campaign. Turns out Elorah loves bowling and she even got a strike - not kidding.

Third, we attended Gift Of Life’s GoSeeDoKC charity event and it was knock-your-socks off amazing. We really want people to come with us next year for sure. The event consisted of silent auction, tasty appetizers (sorry, couldn’t bring myself to say hors de odervs), wine, live auction and conversation. The auction items were amazing and we got to mean several new families that were impacted by the decision about organ donation. There was one family there who was semi-famous for donating kidney’s. They called themselves “Kidney’s R’ Us” (not kidding). Quite a few of them had donated kidney’s to various people. Quite amazing. We also got to hear testimony from a girl in High School whose father received a transplant last year. Gift Of Life went to her High School in Springfield to share the message. She said that she was forever touched and planned to continue telling people about the importance of organ donation.

More success! On May 5th, we attended an event at Children’s Mercy Hospital in Kansas City. The annual event is used to award scholarships to various nurses and staff at the hospital. After Isabelle’s passing we started planning for a scholarship program in Isabelle’s honor. We want to give back to the nurses that gave so much to us. We are doing that through this scholarship. Our scholarship recognizes excellence in scholastics as well as nominates a nurse in intensive care medicine that is seeking to further their education with respect to cardiology (cardiac and respiratory). This year we awarded Christin Dealy with a $500 scholarship to help pay for tuition and books. It was great to witness all the other scholarships and the stories behind them. It was also so nice to see some of the actual nurses that took care of Isabelle there at the event. I got a chance to get up a speak about the scholarship and we can’t wait until we get to see next years applicants!

Also…we are so excited to be promoting this great event!

Gift Of Life presents the Isabelle Ellis Memorial Golf Classic

June 16th, 1-8 pm (Golf 1-5pm)

Registration Information:

We plan to have a tournament from 1-5 pm, followed by cocktails and silent auction (5 - 6 pm) and we’ll end the day with dinner and awards. You can register for Golf (lunch and dinner included) or for the dinner separately. That way your friend or spouse can join you for the dinner event. We plan to have many great prizes, contents and auction items. It’s for such a great cause and benefits our local community with proceeds benefiting Gift Of Life’s various programs as well as Isabelle’s Heart Of a Princess Eternally (HOPE) programs.

Make sure to follow us on Facebook! Click here. Lots of great updates there!

Thank you so much for making our cause so successful.

Warmest regards,

Isabelle’s Daddy and Mommy

Park Cleaning Tomorrow (4/17/10)

Friday, April 16th, 2010

Hello friends!

Tomorrow (Saturday, 4/17) will be out at Lawrence’s South Park (12th and Mass St) cleaning. We plan to start at 9 am and be done in an hour. We will provide gloves, bags and lots of motivation!

Parking is on the northeast side of the park (on E North Park St). Parking is metered, so don’t forget. We’ll bring coins to share.

Last year’s parking cleaning series went really well. We gave back to Lawrence’s community and helped make South Park beautiful.

When you arrive, we’ll show you where Isabelle’s Park Bench was installed and where the memorial trees were planted.

Reminder: this year, we’ll be cleaning every 3rd Saturday of the month from April through October.

We hope to see you there!

Warmest regards,

Chris & Amanda Ellis

Adventures of Isabelle

Tuesday, April 13th, 2010

Turned on the radio this morning to hear that an amazing artist (Natalie Merchant) has put old children’s poetry into song and created an album. I studied a lot of poetry in college so I immediately became immersed. Hearing her sing some of the poems was absolutely amazing. I plan to get the CD, but while researching the story behind the story, I found that Natalie wrote a song by Ogden Nash called “Adventures of Isabel”. She turned this great little poem (which I had never seen before) into a very cute, upbeat, jug-band style song that you’ll just have to hear. I am posting the lyrics here:Adventures Of Isabel

Adventures Of Isabel

Isabel met an enormous bear,
Isabel, Isabel, didn’t care;
The bear was hungry, the bear was ravenous,
The bear’s big mouth was cruel and cavernous.
The bear said, Isabel, glad to meet you,
How do, Isabel, now I’ll eat you!
Isabel, Isabel, didn’t worry.
Isabel didn’t scream or scurry.
She washed her hands and she straightened her hair up,
Then Isabel quietly ate the bear up.
Once in a night as black as pitch
Isabel met a wicked old witch.
the witch’s face was cross and wrinkled,
The witch’s gums with teeth were sprinkled.
Ho, ho, Isabel! the old witch crowed,
I’ll turn you into an ugly toad!
Isabel, Isabel, didn’t worry,
Isabel didn’t scream or scurry,
She showed no rage and she showed no rancor,
But she turned the witch into milk and drank her.
Isabel met a hideous giant,
Isabel continued self reliant.
The giant was hairy, the giant was horrid,
He had one eye in the middle of his forhead.
Good morning, Isabel, the giant said,
I’ll grind your bones to make my bread.
Isabel, Isabel, didn’t worry,
Isabel didn’t scream or scurry.
She nibled the zwieback that she always fed off,
And when it was gone, she cut the giant’s head off.
Isabel met a troublesome doctor,
He punched and he poked till he really shocked her.
The doctor’s talk was of coughs and chills
And the doctor’s satchel bulged with pills.
The doctor said unto Isabel,
Swallow this, it will make you well.
Isabel, Isabel, didn’t worry,
Isabel didn’t scream or scurry.
She took those pills from the pill concocter,
And Isabel calmly cured the doctor.

-Ogden Nash

This poem is Isabelle. It shows all her characteristics. She is adventurous, she’s is full of spirit, she is a lady, she is not afraid and she has poise and control. I cannot stop reading the last 9 lines. They literally stopped me in my tracks…

That was how Isabelle handled her last few months of battle. She was strong, showed no sign of weakness and she cured the Dr’s (and the rest of us) of our many false perceptions. She showed us that you can be strong and still be a Princess. You can experience tremendous pain and still have grace. You can do what others say is best for you and in the end show them you were right.

I would love to post the song, but hopefully you’ll get to hear it through radio, TV or by heading down to the music store. You can look up the CD “Leave Your Sleep” by Natalie Merchant or you can go here for a digital download (99 cents).


Isabelle, you are such an amazing littler girl and we miss you very much. You are my little adventurer…


Happy Birthday Sweet Isabelle

Thursday, February 4th, 2010

Hello friends and family,

We want to start off by wishing our dearest Warrior Princess Isabelle a happy 5th birthday. We all miss her so much and I am imagining you all at her birthday party (that would have been). She would have requested macaroni & cheese, lots of chocolate and chocolate cake with way too much icing. She would have wanted loads of Disney Princess, Barbie Princess and anything “Princess-y” for her birthday.

We have lots of things to announce, so here goes:

First, we started a Facebook group for the charity. Anyone can join, get updates and notifications about events. The link is here. Please join and encourage other supports to join.

Second, we started a Cause on Facebook. This cause will help guide people, globally, to our mission. The cause will also facilitate the raising of awareness through social networking, challenges and the raising of money. Currently we are pointing to TCHIN ( which is a group of people across the country (some international) that helped us through our struggles. Once we get Heart of a Princess, Eternally registered with then we can consider setting it up as the primary benefactor. The link is here. Please join and encourage other supports to join.

Next, we have bracelets for sale. A lot of them! With each bracelet sold we will raise valuable funds for our charity, which will go towards communication and awareness about congenital heart disease, treatment options and the importance of organ donation. I will be posting the order page for the bracelets in a day or two, but until then, please send me a note via email ( or via Facebook if you would like to help sell the bracelets. The two titles we are going with are: “Give Life, Be An Organ Donor” and “Princess Isabelle Ellis”. Colors are green, white, red, pink and baby blue. The prices will be tiered based on how many you want. All proceeds will go towards paying for the bracelets and towards the core charity fund.

Also, we are so proud to announce our first scholarship!!! The Isabelle E. Ellis Memorial Scholarship will have its first year at Children’s Mercy Hospital of Kansas City this year! We will be starting the application process and participating in the selection process. Applicants will be nurses in the NICU or PICU who are seeking funding for advanced coursework in nursing school. The single nominee will join us as a special luncheon in early May. The scholarship ($500) will be an annual and go towards tuition and books. This is such a great thing to share with you.

Next, we are proud to announce a new partnership with a local charity: Gift of Life. We will be working with them in multiple manners. First, we will regularly communicate events and activities of Gift of Life in the Overland Park, KS area. Second, we will be partnering with them to host a golf tournament this year. The golf benefit (title pending) will be used to raise monies for both charities, with emphasis on the importance of organ donation and awareness. We are looking for volunteers who would like to help with this benefit (all levels of participation welcomed). If you are interested, please contact us as

Finally, the website will be undergoing some changes soon. We plan to keep make some cosmetic changes and to move a few things around. It just needs to be more Princess-y.

Today, I took about six dozen Blue Chip Gourmet cookies to Isabelle’s Daycare to share with the teachers and kids. Isabelle loved sugar cookies and she loved to decorate them, too. It was a nice way for us to show our appreciation for all that the staff and teachers there have done for us.

Lot’s of exciting things for 2010. If you are interested in participating (at a higher level) in our endeavors, please send us an email at

Stay tuned as I should have more updates to share with you in a few days.

Thank you!

Happy Birthday Isabelle!! We love you!!

Chris, Amanda, ^Isabelle^, Elorah, and Benjamin

Thank you

Friday, July 17th, 2009

To all who have supported us so much,

We wanted to tell you “thank you” with all our hearts. We received so much support in all forms and we continue to get wonderful support. It’s a testament to how big your hearts are and how much Isabelle meant to you. Her spirit lives on.

Thank you to all those who came to help us clean South Park last weekend. You volunteered your precious time to help us do something nice for the community in Isabelle’s name. Isabelle loved playing in the park and she would ask to go every day. She just loved having fun in the open air. She’d play until she wore herself completely out.

Cleaning the park is our way of remembering Isabelle. It’s our way to keep her spirit alive and ensure that South Park gets some much needed attention (tender loving care). I have to share a funny story about this. Back in May we got started on cleaning the park and there was a homeless person sleeping on a bench (don’t tell the parks and rec please). We came across this person, who was an older man, and he said “you know they have people that get paid to clean up this park” and Amanda said “we’re cleaning the park to help remember our daughter” to which he said “you could do that at a pizza restaurant”. That’s such a poignant moment that I reflect upon often. We didn’t go into an explanation with this person about why we were doing this and why Isabelle was so wonderful and why we are trying to give back to the community in her name.

I think all of you know “why” (hopefully). When we go to the park we feel like Isabelle comes with us. She was such a warm and wonderful person and her spirit of sharing and giving is easily spread to you when we do these things together.

We definitely don’t get paid to clean the park, but to us, it’s one of the most important things we’ve done. It’s something that is so close to Isabelle’s heart that we just love sharing it. Now, if the weather would continue to cooperate (not too hot and not too wet) then we can definitely have an awesome time there.

Again, thank you so much to those who have come to the park to help us. On average it’s taken us a around an hour to do it (with your help). Without help, it was taking around two hours!

To stay in touch with the events that we’ll be participating in, please be sure to bookmark this page:

Thank you for being there for us!!

With lots of love, Chris, Amanda, ^Isabelle^ and Elorah