Tag Archives: Amazing Stories

Three years later!

Hello out there! My mom, Grammiex10, keeps reminding me that people still read this and I should post an update, but we have been busy and this blog has fallen by the wayside. If you’ve been waiting for an update, I’m sorry! But, as we all know, no news is good news!

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The three year anniversary of Emily’s diagnosis came and went without fanfare. I knew it was the 8th, but I didn’t feel any emotion really. The day that was the most emotional was actually the day our Classical Conversations group went roller skating for Valentine’s Day, since that was the event we went to right before taking Ems to the emergency room. But this year Emily strapped on her roller skates and skated to her heart’s content! Then she sat on the floor with some friends and proceeded to stuff her face with valentine candy 😀

She’ll be five in just two months! And her growth spurt has continued to take off. She has just about caught up to the average height and weight of kids her age! She’s louder than the average kid her age … which only shows that Stitch is 100% back!!

Each month she sees her oncology team for a physical and lab work. Her blood numbers are still looking great! Hemoglobin, platelets, white blood cells, and her ANC are all in the healthy range. Her IgG is still lower than Dr. Ducore would like during the cold and flu season, so she’s still receiving IVIG once a month, and so far she’s been really healthy. The only bummer is that she gets a headache and neck pain for 2-3 days after, but she’s still a trooper and deals with it without much complaint. She just received her IVIG on Thursday, so today she took it easy, rested most of the day on the couch with a cold cloth, and took a couple naps. She’ll be good as new tomorrow.

Waiting for her IVIG on Thursday

Waiting for her IVIG on Thursday

If you can believe it, we have an appointment for a hair cut in a couple weeks! Her hair is getting longer, but it’s still somewhat uneven and thin, and her bangs are constantly in her eyes, so we’re going to go for it! Hopefully my hairdresser can even it out while still giving Emily the impression she has “Rapunzel hair” 😉 I’ve been showing Emily pictures of cute little bobs, but we’ll see what works when we get there. I will post photos!

French braids after her bath!

French braids after her bath!

Last week we were able to help bring Build-A-Bear to the children’s hospital again!! Jason, along with a co-chair from CMN, and a sponsor from a local Chick–Fil-A, raised enough funds for all 71 admitted patients to build their own bears. Because Jason had to work, I got to go this year and help the Build-A-Bear staff and the Child Life staff deliver stuffed animals and hearts to the children. Each child went through the heart ceremony to bring their heart to life, then the med surge students sewed the animals up! It was awesome! By far my favorite event for the hospital.

Next week, on Tuesday, March 3, IHOP is hosting its annual National Pancake Day for the children’s hospitals. Go into any local IHOP and order a shortstack of buttermilk pancakes for free! But don’t forget to leave a donation that will go directly to your local children’s hospital! Or you can drive by the hospital on Monday, where they will have a mobile pancake station set up! Get your pancakes and make a donation there. We were so blessed by this event shortly after Emily was diagnosed three years ago, and we’re excited about it this year too! We even had the opportunity to talk with our local IHOP stores to thank them for what they do and share Emily’s story. We have seriously loved being able to meet and thank all the people who support our hospital!

Another annual fundraiser for the hospital is the tattoo-a-thon held by Wild Bill’s tattoo shop every February. Last year I got cold feet, but this year Jason and I took Emily, and I may have supported the cause with a tattoo of my own! Wild Bill has raised over $150,000 for the hospital over the years, plus another $18,000 this year. They even have a room in the PICU named for them.

That’s all for now! I’ll update again soon.

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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

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 Girl of the Year

Emily's cousins discovered a poster with her picture on it at their neighborhood coffee shop!

Emily’s cousins discovered a poster with her picture on it at their neighborhood coffee shop!

You’ve probably heard of Team in Training and Light the Night, right? Team in Training trains people to run marathons and helps them fund raise (like the Nike Half that my sister Jenn ran in in San Francisco in October 2012), and Light the Night is a really neat fundraiser/walk held each year where people walk with different color balloons based on their journey with cancer (we participated in this one). Both of these events are fundraisers for the Leukemia and Lymphoma Society (LLS). LLS has a moto: Someday is today. And their mission is to raise awareness and money to help find the cure for blood cancers.

The third big fundraiser that LLS runs each year is called the Man & Woman (& Students!) of the Year Campaign. Men and women from the community race against each other in a competition to raise the most money for LLS. Each candidate is nominated by the nominating committee, and they commit to ten weeks of super-intense fundraising. At the end of the ten week period a large gala is held, along with a silent and live auction, and the winner of each category is announced. Students are also allowed to campaign, and they run in teams of two.

Most of the candidates have a connection to blood cancer -either they or someone they love has gone through it. But each year a Boy and Girl of the Year are chosen to serve as motivation and inspiration throughout the campaign. They are local blood cancer survivors, and they join the fundraising efforts to share their stories and help the candidates in their endeavors. The Boy & Girl do not have to fund raise themselves.

This year Emily was nominated as the Girl of the Year, and we have been so blessed to meet and help the candidates with their events. Over and over gain -since Emily was diagnosed -I have been blown away by the generosity and care that people have toward others. These men, women, and students spend a huge amount of time on their campaigns -in addition to their regular jobs/studies. They each have a team behind them, but I still don’t know how they do it. It is a huge commitment.

To help with the campaigns (though, really, we aren’t doing much), we filmed a video of Emily’s story and we attend any of the fundraising events that we are invited to. We’ve shared her story with the candidates, and we’re rooting for them! In the end, regardless of who wins, all the money is going to the LLS, so we’re all winners (cliche, I know).

Here is the video:

And here are pictures from some of the events we’ve attended so far:

Emily with candidate Jason Silva at his Fishing Derby & BBQ

Emily with candidate Jason Silva at his Fishing Derby & BBQ

Jason Silva's poster

Jason Silva’s poster

With candidates Ronnie Cobb and Nikki Hurst at their Gospel Choir event.

With candidates Ronnie Cobb and Nikki Hurst at their Gospel Choir event.

With Jennifer Pear, the LLS Campaign Director.

With Jennifer Pear, the LLS Campaign Director.

The Boy of the Year is a sweet, sweet 11 year old who just entered his Maintenance Phase of treatment last November. Out of all the boys and girls in the Sacramento area who could have been chosen for these roles, both Garrett and Emily are being treated at UCD by Dr. Ducore -it’s a fun coincidence.

We’re already halfway through the ten week campaign, but I’ll update with photos as we can.

 

 

Build-A-Bear for the Kids!

It's Build-A-bear Day!!

It’s Build-A-Bear Day!!

We made it happen!! Thank you all SO, SO, SO much!! When we posted two weeks ago here , asking for help to get our Build-A-Bear idea back on its feet, you came through big time! In less than 24 hours we were 2/3 of the way to our goal, and within a week we had exceeded it!

So today, Friday Feb. 7, 2014 Jason and the Children’s Miracle Network, together with the manager and workers of our local Roseville Build-A-Bear store, are in the UC Davis Children’s Hospital Playroom putting together bears with the patients! Jason is posting pictures to his Facebook page, so I’m borrowing them and posting them here as they come in (all children shown have signed a consent).

This date was picked because February is Heart Month at the hospital, and the focus is on congenital heart disease and heart health. The B-A-B staff have set up shop in the playroom, and some of the Pediatric Heart Surgeons and Med Team have joined them to sew up the hearts. So fun!

Build-A-Bear staff

Build-A-Bear staff

Joy waiting to be spread!

Joy waiting to be spread!

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Hearts ready to go through the Heart Ceremony and be sewn into each animal.

Surgeon statioon set up!

Surgeon station set up!

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Med Students helped sew the hearts in

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I think this is good practice!

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Tucking her heart in

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So many choices!

Going through the Heart Ceremony

Going through the Heart Ceremony

Making a wish and kissing their hearts

Making a wish and kissing their hearts

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Even the kids who couldn't make it to the playroom got to participate.

Even the kids who couldn’t make it to the playroom got to participate.

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News crews showed up.

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Jason and Trisha with the Build-A-Bear team

Headed upstairs to the PICU!

Headed upstairs to the PICU!

Jason said the day went better than hoped and everyone was so pleased. He also said there were more than a few tears throughout the day, mostly from the parents who were so appreciative of the gesture. He had the chance to explain how the idea came about and how the funds were raised, and many of the parents asked him to tell all of you thank you! They were so touched.

The last thing I have to share is a video (shared with permission) of one PICU family going through the Heart Ceremony for their son, Roman, who could not do it himself.

**Thank you all SO much for helping us make this happen! I think this is my absolute favorite thing we’ve been a part of since Emily’s diagnosis two years ago.**

An article featured on the UCD website: http://www.ucdmc.ucdavis.edu/welcome/features/2013-2014/02/20140214_children_bears.html

Can you help a Pediatric Patient?

**UPDATED** We did it!

Do you remember this post, when Grammie shared that Jason and I got to help the Children’s Miracle Network wrap gifts at the local mall, and the Build-A-Bear store right across the way gave each of our children their own bear?

Build-A-Bear!

Build-A-Bear!

Well it was the first time I had ever been to Build-A-Bear and seen the process of building a bear, and I was moved to tears! The manager of the store led each of the kids through the steps of picking out an animal to stuff, picking out characteristics their animal would posses, and then adding the heart. When they added their hearts, the manager performed a ceremony for each one. She had them take their hearts and rub them on their backs while saying, “She’s(he’s) always got my back,” then they rubbed the hearts on their foreheads so their animal would be intelligent, jumped up and down with them so their animals would have health and energy, laughed with them so their animals would be happy and playful, rubbed them on their own hearts so their animal would be full of love, and finally they kissed the hearts so their animal would know how much they are loved. There were more things that I can’t remember, but I couldn’t hold back the tears! I thought it was the coolest thing! And right then I knew we had to make this happen for all the kids in the hospital.

So we asked the manager if it was even a feasible thing -to bring the process to the hospital -and she was as excited as we were! Jason jumped on the job right away and secured a sponsor. Partnering with the Child Life Program, we decided to bring Build-A-Bear to the hospital in February, because it’s Heart Disease Awareness Month. The sponsor agreed to donate enough money to provide a bear for each patient in the hospital on February 7th -that includes the General Peds Floor and the Peds ICU.

Build-A-Bear will bring a variety of partially-stuffed animals and accessories to the Playroom, and all the patients can pick one out and go through the process of building their own bear! Patients that can’t make it to the playroom will have the supplies and heart ceremony brought to them!

We have been so excited about this, but just today our sponsor pulled out. We could throw in the towel and give up, but we decided to turn to our friends for help. Build-A-Bear has given us a significant discount, but we still need to raise $1800 by Feb 2, 2014 to make this happen.

Jason set up a page through crowdtilt.com, to make it easy for anyone to donate. $30 will purchase one animal, but of course every little bit will help, even if it’s $1! Will you help us make this happen? If so, you can click the link below to go to the donate page. We’ll of course keep everyone updated as things progress! Thank you!

Sponsor a Build-A-Bear! 

Build-a-Bear for a Peds Patient!

Build-a-Bear for a Peds Patient!

The Gold Hope Project

Over the past year and a half, we have learned of many, many wonderful organizations dedicated to helping or supporting families with cancer-children. We have seriously been blown away by the generosity of time and money from these groups. The cancer world is not one we would have chosen for ourselves, but now that we’re here, we are very thankful that our eyes have been opened, not only to the needs of other families like ours, but also to the amazing hearts of people who just want to help. It is a humbling experience to walk this road, constantly dependent on others, but it is also a blessing. We actually feel refreshed, bathed in the love, care, and kindness of others.
Recently I learned about an organization called The Gold Hope Project, http://www.goldhopeproject.com. This nation-wide group is run by women dedicated to helping cancer-kid families capture their children in photographs, providing a keepsake they can treasure for years to come. The GHP matches up families with local photographers, who have volunteered their time and talents, for a photo session, and our family was recently able to participate. Mindy Newton, of http://www.mindynewtonphotography.com, a photographer based in the Roseville area, met us a couple weeks ago to snap some photos. We had a blast! Mindy was super sweet, and even though it was Emily’s Steroid Week -and she wasn’t on her best behavior -Mindy was able to capture some really neat pictures.

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Team Will

Early in Emily’s treatment, she had the honor of meeting a group of people committed to raising awareness and funding for research and resources for children with cancer. Team Will is a Sacramento-based organization that annually relays across the country – riding 24 hours a day in honor of the 24-hour-a-day fight children with cancer face.

This year, 16 riders and 8 crew members departed from San Francisco, California on June 24th. With at least one rider on the road at all times, they will cross 13 states before the journey ends on July 3rd in Boston, Massachusetts. Along the way, the cyclists will visit 18 hospitals and participate in 7 community rallies with the goal of raising $125,000 for child support services and childhood cancer research.

After meeting Emily this spring, members of Team Will are riding right now with Emily in their hearts. You can follow Team Will’s journey across America here as well as sponsor one of the riders.

Groups like Team Will not only bring critical funds to the cause of childhood cancer but often give the even more important gifts of support, hope, and encouragement to the children fighting every hour for a day they will be cancer free.

Thank you Team Will!

 

Over $135k for the Children’s Miracle Network…Thank you!!

Thank you to everyone who donated to the Children’s Miracle Network’s Care-a-thon Sacramento! With your generous support, more than $135 thousand dollars was raised for the U.C. Davis Children’s Hospital and little warriors like Emily!

Emily’s online fundraising page brought in over $7,315 alone! In the hour her parents spoke on the radio, another $1,200 was raised!

AnneMarie Smither’s Big Spoon fundraiser added to the cause and even Emily got to enjoy some delicious frozen yogurt!

Family friend, Asher Styrsky and the Styrsky Insurance Agency, generously matched donations to the Care-a-thon and the Love family, putting forth $2,500!

Emily enjoying yogurt at The Big Spoon

Over the past three days, if you have been listening in to The Wolf 101.9 or watching Fox 40 News, you’ve probably heard some amazing stories of strength and perseverance from families just like the Loves. The Children’s Miracle Network not only makes preeminent hospitals like U.C. Davis available for sick children but it also provides programs and people that look after the emotional health of the entire family.

No one but our Lord can take away the pain and fear that comes with Emily’s battle but the staff at the U.C. Davis Children’s hospital does everything they can to provide encouragement, hope, compassion, and laughter.

There are few words adequate enough to explain what this organization has given to the Loves over the past two months and what they will continue to provide for children and families just like them. But it has been an honor to help raise the funds needed to maintain the Children’s Miracle Network into the years ahead.

THANK YOU!!

Watch here for the Fox 40 News clip of the Love Family’s story and listen here for a music montage played on the Wolf 101.9.

The Loves with Wolf DJ Chad Ryan

Children’s Miracle Network Care-a-thon

It has been six weeks since Emily first went to the U.C. Davis Medical Center and we  heard the word Leukemia.

Six weeks full of doctors, surgeries, needle sticks, and chemotherapy.

Six weeks full of meals, gifts, babysitting, and hugs.

Six weeks full of smiles and tears, love and support, and ever constant prayer.

The Love family has been surrounded these six weeks, not only by God’s arms of strength, but by friends, family, and complete strangers doing everything in their power to ease the difficult road Emily and her family are on. They have also been blessed with doctors, nurses, and specialists providing the highest level of medical care for our little Stitch.

In the midst of their own struggles, the Loves have seen and been touched by the many children they have met and heard of also struggling with serious illnesses and injuries. They may never be able to thank every person who has supported their own family, but they are motivated to give back and help others in a very special way that you can be a part of, as well.

The Loves have become Ambassadors for the Children’s Miracle Network – a charity committed to providing support and services to Warrior-children just like Emily. Over the next three weeks, Jason Love is leading a fundraising campaign as a part of the Network’s Race to 100k Care-a-thon. Along with several other Sacramento families, Jason has set a goal to raise as much as he can before April 12, 2012. On April 11, 12, and 13th, Jason will then go on local radio station WOLF 101.9 and Fox 40 News to ask businesses to match the donations he has raised in the weeks preceding. The money will all stay in the Sacramento area, supporting hospitals like the U.C. Davis Medical Center and other support services for families like the Loves.

You can help Jason meet his goal by donating directly to the Children’s Miracle Network via this link: Support Team Love. The Loves have received so much support through Emily’s illness, now you can help make it possible for other children to have the same support!

Thank you to family friend, Asher Styrsky, President of Styrsky Insurance Agency, who has committed to not only match the donations to the Children’s Miracle Network up to $2,500 but to also matching the funds specifically for the Love family! You can see his commitment here and be reminded, yet again, of the wonderful blessings God has provided for the Loves through the generous hearts of His children.

If you are part of a business that wants to help by matching the funds Jason raises in the next three weeks, please consider making a commitment to call-in during the Care-a-thon on April 11, 12, and 13th. You can pledge your support and get more details by emailing Jason at emily.stitch.love@gmail.com.