Kids Cure 2013...You Shattered the Bubble!

When I set a goal a couple of days ago to get 25 donations toward Team Esther and the Kids Cure for Cancer, it felt like a very far off goal. It was really one of those, that would be fun, but won't happen sort of things. I had such little faith!

As of Friday night we had 7 donations, and then the donation site was unintentionally shut down and I was really happy to have had those 7 donations. When the site came back up Saturday, I thought maybe we could get a few more, but I had no idea!

We received four more donations Saturday afternoon, we were up to 11 donations! We went to bed about 9:30, so when I fell asleep, we had a total of 12 donations.

I thought I'd ask one more time and then all of you rallied! 9:10 pm, 9:51pm, 10pm, 10:07pm, 10:13pm, 10:18pm, 10:23pm, 10:39pm, 10:59pm, 12:28am.

Well, Esther woke up about 1am hungry, so I thought I'd check to see if there had been any more donations, I was NOT expecting to see these 10 emails all in a row. We were up to 21 donations. This, of course, required a quick blog post and several facebook updates to share the news with the rest of the world who was awake in the middle of the night. I went back to sleep excited and hopeful we'd get all 25!

Then Lydia woke up and needed some comforting. Of course I checked again...1:59am, 2:01am, 2:02 am (clever, you are). Three more donations! We were at 24! I was ready to just put in the last donation, but thought I'd wait until the morning to see if just one more would come.

Sure enough, our 25th donation came at 2:49am from two beautiful women we've met at Brent's Place who had been watching the progress all night and wanted to be the final donation.

When I woke up and checked the totals another sweet gift had been given to Team Esther at 5:19am, for a total of 26.

But...it didn't stop there! Throughout the day today, three more donations have come in. Even one very special gift from a young man not much older than Esther. Thank you, sweet boy!

The 29 donations total $1,471. This is really amazing! Thank you for so generously providing for families at Brent's Place. Broken down, this equals:

• Almost 16 days for a family to live at Brent's Place OR
• 10 nights of meals for all the families living in the building (and a few more staying in the hospital) OR...
• 29 weeks of cleaning supplies OR...
• 147 movie nights (That's almost three years of weekly movie nights)!

Even if you weren't able to join us physically, thank you for cheering us on and thanks to all 29 of you who have so generously given. I wish I had enough t-shirts to give each of you!

 

The race today was great, a little rainy, but maybe that's better than too hot. I am so thankful to everyone who was able to make it out today (even our mystery team members...Brittni K. and Ryan G., email me so we can meet!). We were blessed with the kindness of each person who came! I hope next year we can win the biggest team prize...who's in?!

Ready to go!

Along the route there were signs. We thought the girl in this one was pretty special!

 

We stayed at Brent's Place alongside these sweet faces!

After the race we enjoyed pancakes, fruit, sausage, and lots of fun. There was a train, a bouncy castle, lots of booths with info and games, and music.

We stayed at Brent's Place alongside these sweet faces!

Sela and Kahlen at the finish line!

Our Team (minus Sela and Kahlen, they escaped before we got to this pic)!

My sweet friend, Cari

Twins Club REPRESENT!

There was a train made from these plastic barrels. Perfect ride for a kid who has to be careful of her tubies.

 

Awesome face painting (actually air brushing).

 

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Night Owls Needed!

Why am I writing a blog post at 1:30 am?!  

First, Esther woke me up. 

Second, she needed a late night snack. 

Third, I HAD to check on our goal to get 25 donations for the Kids Cure for Cancer. 

Fourth, WE ARE ONLY FOUR AWAY! That's right in a little over one day there have been 21 generous people who have now provided a family nearly two weeks at Brent's Place!  

Will you please help us get to 25 donations?!  This rally has brought us up to the second place fundraising team!  

Here's where you can donate:  https://www.runningguru.com/DonateTeam.asp?tID=14030

I'm so thankful for your support of Brent's Place!  

Can we get 25 by Sunday!? UPDATED

*Update #2* The fundraising service is back up for today if you wanted to donate but wasn't able yesterday. Yay!!!

We got 7 donations yesterday...are you one of the other 18?!

This Sunday is the big Kids Cure for Cancer 5K. We are busy finishing the Team Esther shirts! Okay, okay, just starting them, but they're cool and fun and I do my best work last minute. Today is the last day to sign up on line. You can also registrations the day of the race.

If you can't run, there's another way you can help. Will you be one of the 25 Team Esther supporters?!

We're hoping to get 25 donations in less than two days. Will you help us support families at Brent's Place? Even $10 will help reach our goal.

We have 3 down, 22 to go. Visit Team Esther and tell your friends. Thanks for joining Team Esther by supporting Brent's Place and the Kids Cure for Cancer!

*UPDATE #1* The donation time is up as of midnight, Friday the 26th. I thought registration for the walk closed Friday, but donations were still taken until Sunday, but was wrong. I think I could bring a donation to the 5k if you missed the chance. Thank you to everyone who donated!

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Are you BOLD enough to go BALD?

Hello faithful readers! It's Robin here (Esther's aunt). I am guest posting today to let you know about a very exciting event coming up.

Do you remember, waaaayyy back in January when Sam posted about a fundraising foundation called St. Baldrick's? You can re-read her post by clicking here. As a reminder, here is a little bit of what Sam wrote about it:

"As I've learned about childhood cancer I was very surprised to learn how little awareness and funding is actually out there. For example, in the last 20 years, only two new drugs have been approved by the FDA to treat children with cancer. Pharmaceutical companies don't like to fund the research because there's not a lot of profit in drugs for a small population. Research can be difficult because there aren't large sample sizes. The biggest problem is that in both the public and private sectors, pediatric oncology is VERY, VERY poorly funded and the recent budget cuts have the potential to stop research that is saving lives. Esther is currently receiving radiation. The radiation is penetrating right through her reproductive system and will kill her ovaries. Esther will never have biological children. She also has a significant hearing loss. Could research be done to help these kids both survive the number one disease killer of children AND preserve their bodies? 

This research will not happen until there is more awareness of pediatric cancer. Before this I had no idea the ribbon for childhood cancer is gold and September is Childhood Cancer Awareness month. Here's a few fun ways to support kids and raise awareness of childhood cancer."

"St. Baldrick's is a GREAT support of research for kids with cancer. They support research for treatment and also supportive care for how to help some of those side effects. They fill in the HORRIBLE funding gap for childhood cancer research. Research that is desperately needed. This statement pretty much sums it up...

"But even for kids who survive, the battle is not over. Because of the treatments they had as kids, by the time they’re in their 30s or 40s, more than 73% of survivors will have a chronic health problem and 42% will have severe or life-threatening conditions." ~St. Baldrick's "About Childhood Cancer"

One of the ways they provide that money is a Shave-A-Thon! "

So what is this post about, you ask? Well, we are hosting a Shave-A-Thon!

Save the date for: 

Sunday, September 22nd at 2pm

Summitview Community Church Gym

Ft. Collins, CO

I cannot even begin to tell you how excited I am about this event. And, I hope it makes you excited as well. First of all, we need to recruit some shavee's.

When Esther lost her hair, my then 3 year old, Amelia said this to me many times:




So, our family (my husband, Casey, myself, my 6 year old Delaney, my 4 year old Amelia and my 2 year old Remi) are planning to be bold enough to be bald. We will be shaving our heads in honor of Esther to raise funds for St. Baldrick's.

With that, let me ask you a question. Are you bold enough to go bald too?!? We need more shavee's to raise more money! Think about it!

Okay, so you are thinking to yourself, I want to help, but there is just no way I can shave my head. Well, that's ok! There are soooo many ways you can help out! These are some of the area's that we need volunteers to fill the roles of:

These roles are required to fill:

• Lead Treasure and Secondary Treasurer(Ensure donation handling procedures are followed, must take background check)
• Registrar(organizes registration process and event check in)
• Barber (position filled already, yippee!)

These roles are optional, but oh so helpful:

• Stage Manager:(guides the pre-shave ceremony and assists emcee, shavees and barbers)
• Emcee:(educates and entertains the crowd throughout the event)
• Photographer:(photographs event activities and edits pictures after event)
• Publicity Liaison:(manages media relations before, during, and after event)
• Childhood Cancer and Family Liaison:(coordinates with families of chidren with cancer before and at the event)
• Event Ambassador at Large:(provide general assistance to ensure a pleasant event enviornment)
• Raffle Coordinator:(prepares cotests, sells tickets, solicits prize donations and award prizes)
• T-Shirt Coordinator:(developes a plan for t-shirt distribution during the event)
• Canvassers:(help promote event)
• Greeters:(greet shavees and guests at entrance)
• Volunteer Assistant :(help direct volunteers at event)
• Set-up and Clean-up Crew:(help set up and tear down event)
• Walk-in shavee manager(coordinates with the registrar to manage walk-in shavees)
• Floater: (assists the heads of each "department")

That is a lot of people needed to help out to make this a great event! I know that is a ton of information to take in, so if you see one of the volunteer positions and think, "Yes! I would be perfect at that!" or if you see all of the volunteer positions and think, "I'd love to help, but I am not sure where I could serve best." or if you think, "I am soooo gonna shave my hair off!" Then, you can email me at rfegger@gmail.com and put "Baldricks" in the subject line. Certain roles require more than one volunteer depending on the size of our event.

There are a few volunteer positions that HAVE to be filled before the event can go live via a webpage where you can see pertinent information, begin raising funds if you are going to shave your head, etc. I hope to send this website live by the end of this week! And I hope to hear from you soon too!

18 Candles

As we left our room yesterday, Esther received a cake complete with song to celebrate her last stay.

The kids insisted she had to have candles, so we decided we'd do one for every stay. I love her face as we sung the song Rourke made up, "Happy No More Hospital Stays."

 

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Celebrate!

We are in the parking lot, getting ready to drive away!  Sweet!!!!!!

No more hospital bed for me!

The Last Night on the Seventh Floor

I have to confess, I'm very thankful we've been able to communicate everything that has happened over the last year through this blog and not face to face. Just know, most of the posts involve tears to some degree. Some happy tears, some sad tears, but lots of tears. Today was one big lump-in-my-throat kind of day.

Last night as I was falling asleep, I surveyed the curves of the ceiling, the light peeking through the slits of the blinds on the door and windows to the hallway, and the glow of the screen reporting Esther's vital signs. I thought of how many nights we've spent in a room similar to this, how my daughter's life was fought for and Lord willing, saved, in rooms like this. Some describe hospital rooms as cold and depressing, but I just don't see it that way. Last night I was just thankful to be in a place where a horrible, aggressive cancer can be met with stronger prayer, medicine, and the caring hands and feet of strangers who clean up the vomit and blood and guts of a child whose body has to die to survive. It is a truly remarkable place.

As I awoke and examined the lines of the room in the daylight, that lump started to grow. I looked around at the notes and cards that have hung in Esther's hospital rooms. Many of those cards have been following us from the very beginning. I can hardly believe this day is here.

Before Esther's transplant, I had to laminate the cards so they could be cleaned.

She has a lot more cards and notes at home that I wasn't able to laminate.

Today was Esther's last infusion, the last time cancer fighting drugs will flow through the lines in her chest. This is a big, big deal. A year ago, we didn't know if this day would come, and we were doing our best to hold our trembling hands open to the will of the God whose trustworthiness does not change in life or death. Today, my hands still tremble, but often it's more out of the unbelievable kindness we've been shown over the last year and the mercy shown for the life of a sweet little girl who was named for such a time as this.

Today held many mercies and lots of grace. We were awoken to a third day of care from our sweet Miss Rebecca.

A volunteer came to do a craft project with Esther. This young 17 year old girl fought neuroblastoma when she was a baby, and she has been cancer free for 15 years. The oncologist who cared for her is still around, in fact, he is the attending physician on the floor this week, and they were able to catch up today.

Esther and Madi, a 17 year old NB survivor

Tonight, Allen, from Brent's Place, delivered us the third meal this week. We'd still love to have you join Esther's team at the Kids Cure for Cancer, July 28th. It will be a privilege to support this incredible organization with you either the day of the 5k or in spirit as a homerunner. This was the last night I'll eat a meal from a place that will always feel like home.

We said good bye to many of the nurses who have cared for Esther. I nearly fell apart when Esther said in a sleepy sweet voice, "I love you, Miss Rebecca" as she walked out the door. Esther still has about 6 weeks of treatment. We are expectantly hopeful these last weeks will be the final nails in Esther's journey as a cancer patient, and can't wait for her to be cared for in the future as a cancer survivor. Here's to the last night we're hoping to ever sleep on the seventh floor.

Esther's bunny she named Rebecca Rabbit

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Getting Excited Around Here

It's been neat to see how excited the nurses are that this is Esther's last inpatient treatment. What a huge accomplishment she's making. Several nurses have stopped by to tell her that they are proud of her "strong work" and that they'll miss her, but are so happy she's finishing. One nurse said, "I don't think there has ever been an "Esther," and I don't know if there will be again." God has given Esther a gentle and sweet disposition, and He has answered my request many times over that He would "keep her sweet."

Her pain was better today. She did spike a fever, but that is expected. I was surprised it didn't happen sooner. One of the highlights of the day was walking the halls. She said she liked walking, but I'm pretty sure she was just looking for Mr. Ricardo as she recounted, several times over, where we saw him in the hallways. Silly girl. She had fun with Miss Rebecca again today. It's a treat to be able to see many of the nurses we've had over the last year.

She did stay up until nearly midnight...crazy girl! She was coloring pictures, checking out her glow in the dark beads of courage beads, singing, and talking to a couple nurses. A volunteer brought her a barn and some farm animals that we played with all. day. long. I think I'm good on playing farm for a while. At bedtime she asked if she could sing a night night song to them. She did, but it lasted for over 3 minutes...stalling anyone?! She passed out for a couple hours in the late afternoon, that was a bad idea, hopefully she won't be too cranky tomorrow.

Thank you for praying for Esther this week. I wanted to ask that you would also pray for a little 4 year old boy, Isaiah, we met when we were at Brent's Place. He has leukemia and finished his first transplant right before Esther had hers. Unfortunately he relapsed and is now going to have another transplant at about 11am, MST, Thursday the 18th. I think he is going to have an actual bone marrow transplant rather than a stem cell transplant as they are being as aggressive as they can to cure his body.

 

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A really, really cool gift.

When we were at the hospital, in the PICU, four weeks ago, I left a DVD in the player in Esther's room. It was a very sweet gift to our family of the VBS songs/motions we missed at this year's VBS. And I left it!

Yesterday I headed down to the lost and found to see if it had been turned in, but it wasn't there. I thought I'd ask at the PICU incase they had their own stash of found items. The secretaries said they were sure they hadn't seen it, but they'd look. It wasn't there either. One of them asked which room we were in and miraculously, I remembered. Seriously, it is only because God wanted me to remember that I actually remembered. She said she'd check the player in the room because, "anything's possible." It was there!

The real gift came in this sweet, deja-vu moment.

 

If you've been following Esther's journey, you might remember her singing a different set of VBS songs last year.

 

 

What a grace this is to my heart. A sweet, sweet generous gift from a God who tosses unbelievable mercy and grace for us to daily discover. I am wooed to see Esther make so much progress in such a vivid display.

Esther has done pretty well today. Her pain is high and she's been cranky, but overall, no huge reactions. It was a treat to have Miss Rebecca take care of her today. For several of the higher powered medicines, the hospital requires two nurses to verify dosing as a safe guard. I do appreciate how many steps are taken to protect patient safety. There were lots of times Rebecca needed a second nurse to verify a dose, so we were able to see lots of other special nurses too! These nurses have also been really, really cool gifts.

 

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The Firsts of the Lasts

The last week has held a few big milestones! These are the first of many lasts to come.

First...Esther's bone marrow is mostly recovered! This means she was able to stop taking three regular medicines...she is no longer taking any regular meds! She does still have some antibody related meds that she'll take over the next six to seven weeks I think.

One of the medicines is an antiviral drug that protects her from things like chicken pox. This is also one of the big reasons she has needed to wear the mask in really busy public areas and to the hospital. No need for it anymore either! No more mask! Yippee!

It was with relief I packed up to come check in for Esther's last stay. Last time to pack. Last. Time. To. PACK!!!! I very, very, very, VERY dislike packing.

This morning we checked in for Esther's final inpatient week. If my memory has any accuracy left, we have checked in to stay at the hospital 18 times if you count the day she got home and had to come back. Her stays have totaled somewhere between 20 and 22 weeks.

So far she's doing as expected. It seems like she's having a bit more pain this time, and it's probably our fault. We were so excited about the lack of regular meds, we forgot to start giving her a pain med that needs a little time to build in her system for it to help this week.

I have so many thoughts swirlling through my head, but for tonight, I'm beat and need to get to bed. So, here's a few specific things to pray for us this week:

• Pray that God would direct the medicine to find and bind to any remaining cancer in her body and that her immune system would see and attack anything that has been hiding in her body.
• Pray that this antibody therapy would be like Jehu.
• Pray for protection from allergic reactions to a shot she's getting to rev up her immune system. It's a localized reaction right now, but could turn systemic.
• Her blood pressure is running a little low, and her heart rate is pretty high. Pray her vital signs would remain stable and for no breathing issues.
• Last night Esther said she was happy to come to the hospital so she could see some of her "nwurses." We are going to miss them lots and it would be awesome to get to see those who have been especially dear to our hearts.

 

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The July Calendar

So today I was doing a little housekeeping and updated our July calendar.

 

Esther's last scheduled hospital stay is July 15-19. Following this stay she'll have some at-home meds during August, and her end of treatment scans will probably be at the end of August or beginning of September.

WOOOOOO-HOOOOOO!!! LAST INPATIENT ADMISSION! WOOOOOOOO-HOOOOOO!

Now that's out of my system, on to another July calendar highlight...the Kids Cure for Cancer! It's Sunday, July 28th at Wash Park in Denver. There is a kids 1K fun run at 7:45am and the 5K run/walk starts at 8am. Following the race will be a pancake breakfast and live music as well as awards for those a bit zippier than me. Pancakes. Syrup. Delish.

Several people have communicated they've had trouble registering or finding where to join Esther's team. Here's a few more instructions:

1. Go to www.kidscure.org--Be sure you type .org.

2. You should get to a page that looks like this:

 

3. On the right side of the page it says "Register Now!" Click this button and you'll get to a page like this:

 

 

4. You will have to go through the registration process for yourself first, so choose your age. You will be returned to this page to register for additional people in your family or group after you finish registering for yourself.

 

5. After you choose your age, you'll have to sign into the registration website. You can create an account or use your facebook account. I created an account. All I had to do was enter my email address and a password. After you login or create your account, you'll end up on a page like this:

 

6. Here is where you'll enter your informaion and you can join Team Esther from the drop down menu that says "Team Name". See! Here it is! YAY TEAM ESTHER!

We would love to see you there! So far Team Esther has 20 participants...how about 20 more?! Brent's Place was not only a clean, safe place for us to stay while Esther was so vulnerable, but it was a home and family we never knew would become so dear.

The Kids Cure for Cancer is the founding fundraser Brent's parents, Donn and Linda Eley, began 25 years ago with a dream to support families in ways they were not. Colorado did not have a transplant program when their son, Brent, needed his, and they had to travel far away. Their family was unable to be together during Brent's last days. It's a priveledge to be able to participate in this race that goes far beyond providing a four walls for a family to stay, but a family, support, encouragement, and respite during an unbelievably challenging time.

Esther has managed to keep her dressing on through the weekend. I'm dreading having to change it again and may take a trip to the clinic to get some help this week. I don't want to irritate it more if there are other opotions. She finished her last Accutane pill this morning, so hopefully her skin will be able to heal.

 

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