Monthly Archives: May 2014

Costco and the Children’s Miracle Network

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We’ve mentioned our involvement with CMN (over and over  and over  and over  and over  and over again), and also how we’ve been able to share our story with Costco, one of CMN’s greatest supporters. We love the people of Costco. They are kind, compassionate, generous, and supportive, and they’ve showered us with their affection more than once in the last couple of years. In March of this year the kids and I had the opportunity to share our story with the regional Costco managers again, and afterward, some of them came up to thank us. One of them was a cancer survivor and Costco Depot manager, who invited us to share Emily’s story and Beads of Courage at their 2nd annual CMN/Costco Golf Tournament. Of course, we were delighted to be involved!

So on Saturday, May 3rd, we headed down to Lockeford for the tournament, which was hosted by the Costco Depot and attended by Costco employees and vendors. Every single person we met was smiling and laughing and happy to see us.

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After everyone was registered, they all gathered for a group photo, inviting us to join. Then they introduced us and we briefly shared our story. We brought Emily’s Beads of Courage, and the kids held them up as I talked. Mostly we wanted to thank them for their commitment to CMN. Costco has been a HUGE supporter of CMN for many years -you’re probably seeing the yellow and red CMN balloons at your local Costco now (May is their big drive month). However, in addition to the balloon sales at their warehouses, the Depot began this annual golf tournament -all on their own -and last year they raised $34,000. I haven’t heard the numbers for this year, but I’m sure it was more.

After we spoke, they surprised us by bringing out a birthday cake for Emily while they sang Happy Birthday. They also brought out goody bags for each of the children -and you can imagine how big and full the goody bags were, being from Costco! All the kids also received their very own Costco Employee lanyards! Those were a hit 🙂 The rest of the day was spent enjoying the sweet people, good food, and golf. We all had a blast and are so thankful we got to spend time with such amazing, warmhearted people.

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One of the raffle prize tables.

One of the raffle prize tables.

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Yum!

Yum!

CMN Director, Jacqueline Mills, is the most amazing woman.

CMN Director, Jacqueline Mills, is the most amazing woman.

Sneaking in a snooze

Sneaking in a snooze

Celebrations!

We’ve been super busy this season (I’ve said that before!), and I haven’t posted some important events.

First Time Swimming!

Back in March, we headed down to Southern California to spend a weekend with Jason’s best friend and his wife. It was already Summer there, so we spent plenty of time in the pool. Even Emily. For the first time in nearly three years. You can imagine how excited she was! But even more excited, were her brothers and sister, who have been waiting for this moment since her Broviac was placed 2 1/2 years ago.  Pictures will share more than words can.

First we picked out the perfect swimsuit.

First we picked out the perfect swimsuit.

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She had plenty of well-wishers!

She had plenty of well-wishers!

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swimming!

swimming!

End of Treatment!!

Second, Emily only has 37 days of treatment left! She’ll take her last dose of chemo on Thursday, June 26th! I’m typing with tears in my eyes and a lump in my throat as I think about how close that is. February 8, 2012 seems so very long ago, and we are all overjoyed to be this close to the end! We are planning a huge celebration mid-July (we’re aiming for Saturday afternoon, July 19th), and everyone is invited! It will be open-house style with appetizers, fun for the kids, and hopefully full of everyone who has supported us and traveled this journey with us. I’m working on having the Blood Center mobile bus on site so we can host a blood drive (remember how many transfusions Emily had the first year?) and a booth set up to register bone marrow donors. The only missing detail at this point is a location … that’s been more difficult to secure than I anticipated. But we’ll keep you updated and send out an invite once it’s set!

Last Lumbar Puncture!

Third, seeing as how we’re so close to the end, Emily has already celebrated one huge milestone -her last spinal tap with chemo! Tuesday, April 15th was the last time Emily had to undergo a spinal tap and receive chemotherapy into her spinal fluid. She and I were thrilled to celebrate her last LP (lumbar puncture) and brought gifts to the Children’s Surgery Center nurses who have treated and cared for her for the past 2 1/2 years. I had a difficult time deciding what to bring them. How do you ever say thank you to the people who have helped save your child’s life?  We finally decided on buckets of candies with a “Nurses Survival Kit” tag, a photo of Emily with a thank you note, and a poster we printed that says, “You’ve never really lived until you’ve done something for someone who can never repay you.” These pictures are from that day. I’m a terrible photographer, please forgive the out-of-focus/blurry shots!

Our two cheerful receptionists, who got their own bucket to keep up front :)

Our two cheerful receptionists, who got their own bucket to keep up front 🙂

In Isolation, getting ready

In Isolation, getting ready (we’re typically in that room off to the right of the photo, because of Emily’s MRSA, but today that room was already taken, so she was blocked off in one of the partitions.) Anyone who comes in has to gown up, including me.

Accessing her port

Accessing her port

Dannika, one of our favorite nurses

Dannika, one of our favorite nurses

another favorite (who am I kidding, they're all favorites!)

another favorite (who am I kidding, they’re all favorites!)

Passing the time with finger painting with Child Life Specialist, Ginger

Passing the time finger painting with Child Life Specialist, Ginger

In the OR, ready for the procedure.

In the OR, ready for the procedure.

And she's done! De-accessing her port so we can go home (or, rather, to the Infusion Room for more chemo).

And she’s done! De-accessing her port so we can go home!

Emily handles these like a champ, walking out on her own.

Emily handles these like a champ, walking out on her own.

The Nurses Survival Kit tag we put in the candy buckets

The Nurses Survival Kit tag we put in the candy buckets

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 4th Birthday!

Last, another celebration was Emily’s 4th Birthday! We already shared how she spent her morning at the State Assembly, but after that, we headed to the Cancer Center for an IVIG transfusion. We love her nurses. Absolutely, positively, more-than-words-could-ever-express love them. They treat Emily as if she were their own and make this journey so much easier and more delightful for us all (the photo halfway down is of her sitting in front of a “vanity” her nurses set up for her when she had to go to the Infusion Room unexpectedly). So, of course, they went above and beyond to make her birthday special when she went in that day.

bubbles while they wait

Nurses Dena, Becca, Fancy Nancy, Doreen, and Mary

Nurses Dena, Becca, (Fancy) Nancy, Doreen, and Mary

They decked out her chair! You can’t see everything in this photo, but they gave her a princess pillow case, princess tea set, stuffed animals, princess stickers, a goody bag of snacks for the day, and even had the DVD player set up with Frozen already queued. They also taped up a special sign above her chair. IMG_20140501_143644864

 

She squealed with delight when she saw everything. Maybe at eight or ten years old, spending her birthday in the Infusion Room wouldn’t have been so cool, but at four, being pampered by some of her favorite people was perfect.

Last, another of our favorites 🙂 Nurse Tina. She wasn’t there for Emily’s birthday, so we had to snag these photos last week.

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And the winners are in!

1959515_615526985209992_6125541125100722942_n Our time with the LLS Man/Woman/Students of the Year Campaign has come to an end, the money has been counted, and the winners have been announced. Last Saturday, May 10th, was the night of the Grand Finale Gala, and it felt like the whole city turned out to celebrate. I heard there were around 700 attendees.10368224_615564545206236_7434220702855960907_n1557570_615539951875362_2526233880300163696_n The Hyatt was elegantly decorated, 10172745_615518558544168_4275135495618750426_n and the silent auction items were lined up with care. 10292496_615527121876645_7805885312668070059_n10300024_615527195209971_6559067525339909611_n Everyone got the Red Carpet treatment, 10308344_615534171875940_561666904001182502_n even us. 10365905_615534038542620_9045997013272446953_n Our favorite people, the Man/Woman/Student Candidates were there.

Bernice Craeger

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Lauren Montee, Austin D’Souza, Alex Stamas, Jason Silva, CK Hicks, Brendan MacDonald, Julianna Hess, Megan Hester McCullough, Dulcy Wilson, Roland Guillen

Jennifer Pear, Campaign Director, with Jason Silva, MOTY Candidate

Jennifer Pear, Campaign Director, with Jason Silva, MOTY Candidate

Kim & Doug Brauner and Jim Anderson

Kim & Doug Brauner and Jim Anderson

Alex Stamas with mentor and 2013 Woman of the Year, Gloria Torres

Alex Stamas with mentor and 2013 Woman of the Year, Gloria Torres

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Roland Guillen, Russell Patty, and Jason Heathers

Okay, there are more candidates, but I’ll have to search for their photos tomorrow! It was a splendid evening. We met some amazing people and thoroughly enjoyed the whole event. Well, most of us did. IMG_20140510_182345816

Yes, that face means she was done!

Yes, that face means she was done!

By the time the event began, Emily was already tired and cranky. Waiting a couple hours for the silent auction to end and the dinner doors to open wasn’t what she had in mind. Thankfully we had back-up support to keep her entertained.

My mom and dad

My mom and dad

Jason's mom

Jason’s mom

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Jason's dad

Jason’s dad

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Jason's brother Eric, and his wife Marni

Jason’s brother Eric, and his wife Marni

Jason's brother Aaron, and his wife Gina

Jason’s brother Aaron, and his wife Gina

Plus, Julianna Hess and Megan Hester McCullough -who played Funny Bunny and Pearl the Squirrel in the local college theater play we attended a few weeks ago, were sweet enough to reenact their roles throughout the evening. Anytime Emily felt tired, she would say, “Oh! Funny Bunny said she would tell me jokes!” and we’d hurry over to their table for some comic relief.

The evening was hosted by “Rob On the Road’s” Rob Stewart10313181_615572251872132_5905090627735061342_n   And we enjoyed live music by Mary Joyner and Jeremy Briggs10177884_615549695207721_2629689024393343566_n1012589_615544401874917_2594233244092273947_n

When all was said and done, the candidates raised almost $500,000 for  LLS -a record-breaking amount! 

Now for the winners! First, the Bobby Dean award was presented to Roland Guillen, for his exemplary effort in raising awareness and the spirit he displayed throughout the campaign.

In the Students category, first runners up were CK Hicks and Brendan MacDonald, and the winners were Lauren Montee and Austin D’Souza. Both of these student candidate pairs raised more than $20,000 each and were awarded scholarships.

In the Woman category, first runner up was Bernice Craeger, and the winner was Dulcy Wilson.

And in the Man category, 2nd runner up was Jim Anderson, 1st runner up was Roland Guillen, and the winner was Alex Stamas. All three of these candidates raised more than $50,000 each and had the privilege of naming a research grant in someone’s honor (Jim named his in memory of his dad and in honor of Emily!).

Man, Woman, and Student Winners!

Man, Woman, and Student Winners!

Now I’m just going to shower you with random photos from throughout the night. Plus, you can go to the following links to see even more photos!

Sacramento Magazine and Man and Woman of the Year Facebook (this one has multiple albums with hundreds of photos)

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Boy of the Year, Garrett Heisinger and mom Kelly

Boy of the Year, Garrett Heisinger and mom Kelly

 

 

This young lady was the very first Sacramento Girl of the Year 17 years ago.

This young lady was the very first Sacramento Girl of the Year 17 years ago.

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Aunt Marni taught Emily how to sign her autograph, so she proceeded to autograph her picture in everyone's pamphlets.

Aunt Marni taught Emily how to sign her autograph, so she proceeded to autograph her picture in everyone’s pamphlets.

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Ethan

Ethan

William

William

Adam

Adam

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Dancing with Daddy

Dancing with Daddy

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Congratulating Man of the Year Winner Alex Stamas

Congratulating Man of the Year Winner Alex Stamas

Emily with Jim

Emily with Jim

Earlier in the day, the girls and I were treated to hair an makeup at the hotel. We all had fun getting glammed up!

Sophia getting her hair done

Sophia getting her hair done

The instant they draped the cloth around Emily's neck, she began giggling.

The instant they draped the cloth around Emily’s neck, she began giggling.

Pretty!

Pretty!

They even got gold glitter sprayed in their hair!

They even got gold glitter sprayed in their hair!

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All dolled up and ready for a party!

All dolled up and ready for a party!

And that’s all I have! We are so honored and grateful to have been a part of something so much bigger than ourselves. God has truly blessed us throughout this journey, and we’re grateful for every person we meet and every opportunity we have to give back. Thank you so very much for supporting us!

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May is Bone Marrow Registry Awareness Month!

 

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The coolest thing ever happened last Thursday! Emily and Garrett, the LLS Boy of the Year, were presented on the California State Assembly floor as AssemblyWoman Beth Gaines presented a Resolution to make May Bone Marrow Registry Awareness Month. Woman of the Year Candidate Bernice Creager presented Asw. Gaines with the resolution as part of her candidacy for the LLS campaign, and Asw. Gaines accepted the opportunity to present it on the assembly floor.

Garrett’s family and ours met at the capitol early Thursday morning. Emily’s siblings, Garrett’s siblings, my mom, Bernice, Liz from Blood Source, and Cheryl from LLS watched from the Gallery; while Jason, Emily, myself, Garret, and his dad had floor passes. After waiting in the back and listening to a few others bills and resolutions, we saw Asw. Gaines stand up and be recognized. She then presented ACR 122 which would designate May as Bone Marrow Registry Awareness Month. She read the resolution, which recognized both Emily and Garrett, and the assembly members voted. It passed unanimously.

Then she announced that it was Emily’s 4th birthday, and all the members stood and clapped. Emily acted a bit shy, but she was pleased with the attention. Then the Speaker of the Assembly, John Perez, who was standing right next to us, motioned for Asw. Gaines to come over and asked to be recognized on the floor. He asked for all the assembly members to sing “Happy Birthday” to Emily.  Asw. Gaines led them, and I couldn’t hold back the tears, as I thought about how special it was to be part of something so neat on Emily’s birthday.

Many assembly members came up to us after to shake our hands and introduce themselves. I was overwhelmed with their compassion and kindness.

When the session ended, all of us got to go back on the floor for photos with Asw. Gaines. And Garrett and Emily were presented with framed copies of the Resolution!

This whole Man/Woman/Students of the Year campaign is a really neat way to raise money for LLS, but it’s also proven to be an exceptional way to raise awareness. And we are privileged to be a part of it!

If Garrett or Emily relapse, they will most likely need a bone marrow transplant. And they’ll need an exact match. Sometimes family members are matches, but 75% of the time this isn’t the case, and the patient has to turn to the Bone Marrow Registry. Unfortunately, sometimes even then they don’t find a match. It is so important that people register (it’s super easy!) and are committed to going through with it should they ever be matched to a recipient. Two of our young survivor friends are here today because of donors who matched them, and we hope everyone who needs a match is able to find one. It’s not hard to register on the database, and it’s not a long or painful procedure should you ever match someone. And you could save a life!

Woman of the Year Candidate Bernice Creager, Asw. Beth Gaines, The Heisinger Family, and The Love Family

Woman of the Year Candidate Bernice Creager, Asw. Beth Gaines, The Heisinger Family, and The Love Family

 

WOTY Candidate Bernice Creager, Asw. Beth Gaines, Garrett, & Emily

WOTY Candidate Bernice Creager, Asw. Beth Gaines, Garrett, & Emily

If you’d like to watch the proceedings, the link below is a shortcut that will take you directly to the ACR 122 segment.

http://calchannel.granicus.com/MediaPlayer.php?view_id=7&clip_id=2090&meta_id=19443

If that doesn’t work for you, try this:  click on this link  then scroll down until you see the Assembly Floor Session for May 1, 2014. Click on “video” and a new window will open. You can skip the first 35 minutes, and go right to ACR 122. Our portion is about five minutes long.

Finally, Bernice Creager and Asw. Beth Gaines appeared on Fox 40 this morning right before holding a press conference at the capitol for the resolution. Afterward they hosted a Bone Marrow Registry Drive in the basement of the capitol.

http://fox40.com/2014/05/06/bone-marrow-drive/

LLS campaign is almost over!

Whew! We have had a busy 9 1/2 weeks. When we signed on to help with the LLS Man/Woman/Students of the Year campaign, we knew we were committing to a busy Spring schedule -mostly because we also have two boys playing baseball, one playing golf, and Sophia in American Heritage Girls, in addition to Emily’s ongoing treatment and our involvement with the Children’s Miracle Network. But we figure it’s about the same as what most families are committed to on a regular basis!! And it’s NOTHING compared to our schedule two years ago, when Emily was first diagnosed. So it’s been busy, but in a good way, and we’re so happy to help. Plus, we have met some amazing people and been able to participate in some really cool events!

The LLS campaign ends this week! We get to celebrate at a fancy-schmancy gala on Saturday where we’ll find out how much money was raised and who the winners are! The girls and I are really excited to get all dolled up, but the boys don’t seem to be as happy about suits and ties. They’re lucky I couldn’t find tuxedos!

So here’s a brief rundown of some of the events we’ve been a part of since I last updated:

On Sunday April 6th we got to attend the SacTown Credit Union 10 Miler. This is an annual race sponsored by the Credit Unions that benefits the Children’s Miracle Network. One of our Woman of the Year candidates, Bernice Creager, set up her LLS booth and asked for donations and registrants for the Bone Marrow Registry.

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Jason & Emily in front of Bernice's booth

Jason & Emily in front of Bernice’s booth

Emily w/Woman of the Year candidate Bernice Creager

Emily w/Woman of the Year candidate Bernice Creager

That same day the kids and I were invited to attend the local city college theater to watch two of our student candidates in a play of Goldilocks! It was such a fun thing to attend, and Emily can’t stop talking about it.

Emily & Sophia with Students of the Year candidates Julianna Hess & Megan Hester-McCullough (plus a little mouse)

Emily & Sophia with Students of the Year candidates Julianna Hess & Megan Hester-McCullough (plus a little mouse)

The following Sunday we attended  Man of the Year candidate, Roland Guillen’s Foot Golf Tournament. He is running for his friend Mike, who was diagnosed with lymphoma last Fall. We got to speak, along with Mike. The Boy of the Year, Garrett, got to play in the tournament with his brother and sister.

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On Thursday the 24th we were invited to see David Garibaldi live! A former candidate, Abe Snobar, held this event and invited all the candidates plus Emily and Garrett. Wow, it was COOL! At the end of the show all four paintings David painted were auctioned off, and all the proceeds went to the LLS campaign.

On stage with Abe Snobar & our MC for the night

On stage with Abe Snobar & our MC for the night

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On Saturday the 26th we attended Students of the Year, CK Hicks’ & Brendan McDonald’s Pasta Feed. Emily had fun dancing 🙂

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The students showed Emily’s and Garrett’s videos, then Garrett’s grandma and I spoke to the attendees. We are so thankful for people like this that give of their time and money -because without them, we wouldn’t have the research that’s given Garrett and Emily a fighting chance.

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There have been many, many other fundraiser events over the past 9 1/2 weeks, and I know all the candidates are looking forward to this weekend -when it’s all over!