(bright music) ♪ Happy birthday dear Lauren, happy birthday to you ♪ - Blow hard.

(attendees chattering) (somber music) ♪ Q, R, V, W, X, Y and Z ♪ (child speaks indistinctly) - Wow, it's a doll house!

Woo-hoo.

♪ Now I know my ABCs, next time won't you sing with me ♪ - Great job.

(attendees chattering) Lauren.

Lauren always loved the water.

She had no fear whatsoever.

Good job.

Wow, look at that.

- Lauren was always typical older sister, you know, telling you what to do, what to wear.

I was never the only child.

- As she got older, she developed great friendships like Egor and DeAngela.

- Egor is the person who really made that friendship happen.

- On my senior year of high school, it was about December area.

I signed up to be a wrestler.

I walked in and DeAngela and Lauren were sitting at a table and I didn't really know anybody so I just kind of sat there and we started chatting and talking.

Think our energies or our just personalities mixed well together.

- Because I never clicked with someone as well as I clicked with Lauren and Egor.

- Well Lauren was kind of our kid in our little group, I guess.

She started out being really shy and she needed kind of a push to do things, not sports-wise of course, she was always determined to do that, but in like social aspects of life.

(whimsical music) - My daughter was very competitive.

Anything that she set her goal towards, it happened.

- This is an incredibly healthy girl who had plans and goals.

(buzzer beeping) (attendees chattering) - Lauren was awarded the female athlete of the year for Laguna Creek High School in 2011 and then the following week was sections and that's when she broke the two high school swim records.

- 101,18, whoa!

- So then she graduated high school about two weeks later and she was experiencing some independence, getting ready to go off to college and then we went to Hawaii.

(gentle music) It was the Wednesday after her graduation, the end of May of 2011 and it was gonna be just a great trip, just the three of us.

She acted just like Lauren and she was so excited to be there.

She met a nanny from Germany named Esma and they really bonded, so they spent some time together and Lauren taught her how to surf while Mark and I went and snorkeled.

I had no idea that anything was wrong.

- She called and she said she had a pain in her leg and I said, "Well what were you doing today?"

And she said, "Well, I was out surfing."

And I said, "Well that's probably the pain in your leg."

And so she said, "No, it's deep, it hurts."

- She did develop the pain in her leg, but then she was fine and she just wanted to experience everything she could.

(somber music) - I went on the internet and I just ran across something that I had hoped it wasn't and it was a Ewing sarcoma (water splashing) (air swooshing) and just hoped that that wasn't it.

(water splashing) (air swooshing) - Ewing sarcoma is one of the less common cancers.

The likelihood of a child, of a teenager having cancer is only about one in 5,000, so the number of children at any one time with Ewing sarcoma is relatively low.

- She'd made an appointment for Friday, for that Friday after she got back and she called me and she said they did a quick ultrasound and they saw a mass.

- She went to the doctor by herself because she was 18.

(somber music) - I called Deanne and said, "Hey, this is what's happening."

I said, "there's a CAT scan scheduled."

We went into the CAT scan and of course you don't know anything, but then we got some results later.

- The time that it really started hitting me that something more serious was going on was with her biopsy.

I had been told that she had a large tumor under her quad muscles and the person who had told me that said that she was gonna have a long journey ahead and that scared the life outta me.

- We think that the three months that Lauren was having pain before she came to medical attention, the tumor had probably gone from microscopically small to a few inches in diameter.

That rapid growth is a hallmark of childhood cancers.

- Being diagnosed with cancer was a shock to all of us.

She reached out to Egor and he came over right away and I remember them sitting on the curb outside in the court and him just talking with her and being there for her.

- Sat there and kept her company.

I don't think she needed to hear any words.

She just need to know that there are people there that love her and care for her.

- She was the first person in my life to ever have any kind of illness or something that can be terminal, so it's an indescribable feeling.

- As a young adult at that age, you think you're invincible and it hit us really in the heart.

- I don't think I knew just exactly how bad it could be.

- It's just something you don't wanna believe.

- It was like we were in a different world.

This couldn't be real.

- The disease is pretty well understood.

There's an important translocation between chromosome 11 and chromosome 22 that seems to create an abnormal gene that leads or contributes to this cancer in 80 or 90% of the cases and Lauren's cancer did have that translocation in it.

- I remember his exact words were "We think we know that we can treat her.

We think we know what she has and we can treat her."

- She decided to take a very aggressive approach and took most of her chemotherapy that other children do in the hospital as an outpatient.

- She would have chemotherapy three weeks out of four and then that would repeat.

- We gave the actual chemotherapy in the Kaiser clinic, but she would do all of her post hydration and all of her bone marrow stimulation at home in order to stay active and in order to stay involved with things.

- She was really brave and hated to complain.

- Lauren lost all of her hair.

Lauren required lots of blood transfusions.

Lauren lost lots of weight and became malnourished.

- Most of the time, she didn't really talk about the negatives, but then I remember sitting on the floor and she was saying, "I can't do it, I can't do it" and I told her, "Lauren, look at your leg.

You can bend your leg again.

The chemo is attacking the cancer.

You can do this.

You're strong.

You can do this."

So she would get her resolve up again and realize that something good was coming from it.

- If you look at this, you can see the tumor.

Kaiser is a very active member of the Children's Oncology Group, which is the current pediatric research program throughout most of the children's hospitals of the United States and the treatment that Lauren followed was the treatment plan set forth by the Children's Oncology Group and has the best possible current prognosis.

(attendees clapping) - Last night I had dinner with one of my new heroes that has inspired me a ton, Lauren McCullough.

(upbeat music) (attendees clapping) - Lauren was amazing from the very beginning.

- Well, I'm bald, I was diagnosed with cancer right after I graduated high school.

- She was very interested even while she was on treatment, in reaching out to other teenagers and other young adults who had you Ewing sarcoma.

- I'm still fighting, I'm just doing things that I love and I think that's what everyone should do.

Do things that make you happy.

- And she became very active in trying to advocate for research in children's cancer.

- I just had to thank again, for being a big support, myself and the American Cancer Society (indistinct).

(attendees clapping) - She is pretty spunky.

- I just love needles.

- She was gonna live strong, Lauren's strong.

- When she got diagnosed and months later I joined the Navy, we never really lost contact, we talk all the time.

I never believed that anything like actually was gonna happen to her.

There's no way, she's a strong, strong girl.

- Deanne and I were in when she had her whole body scan and they, you know, the results came back saying there was no cancer.

(bright music) - I saw it in her eyes and I saw she was determined to do this and beat it and she did.

- She popped right out of therapy and ran off to junior college.

(bright music) - She was back in her element.

The fire was re-lit and she was ready to just go.

- Lane eight, Lauren McCullough.

- Diablo Valley College was my school.

I loved swimming there and so with Lauren swimming and also with Mark swimming there, it was just kind of a fulfillment.

- And then came the conference championship meet.

- Go Lauren!

- And her time on the backstroke that qualified her for the state championships.

(attendees cheering) - Alright guys, second at 28.27.

- Conference meet, that was a big meet.

It was the largest meet that I went to for college.

- It was such a defining moment for her, because it took a lot of work to get back in physical conditions.

That meant that she absolutely was back.

She had beat cancer.

- She was able to reverse all of those side effects through a lot of effort and even got back her athletic ability and that's very unusual.

- To not only be a member of the team, but to be a contributing member of the team, where she actually meddled.

- Lauren was at the state meet in Los Angeles and it seemed that everything was going well, but she said that she had a pain and she wasn't feeling good.

She said, "I don't think I can swim" and so we left the meet, went to emergency, and they did some X-rays and they saw that there was fluid on her lung.

They said, "You swam, you know the day before?"

And she said, "Yes."

"I don't see how you did it.

You must have been in so much pain."

- About two thirds of the children with Ewing sarcoma will respond to the state of the art therapy, the same therapy that Lauren got and be cured.

(somber music) Unfortunately, about one third of the children who get it, the disease will come back and it's very rare for a relapsed Ewing sarcoma to be saved.

- Dr. Jolly just held her hands and explained that there was a large tumor in her chest and that the cancer had come back.

- It was very hard to tell Lauren that she had relapsed when the time came.

Obviously I felt very close to her, our whole staff did.

Everyone was very sad.

- Lauren had asked the doctor how much time she had and she was told six months.

That's where our lives fell apart for a second time.

They took pictures of the inside of her chest and it looked like chickenpox or the worst case of acne that you've seen.

So we just settled in for new treatment.

It was June 12th, DeAngela had just come back from Kentucky and Lauren just couldn't wait to visit with her, her best friend.

That same day, she started feeling really bad, so she wanted to go to the hospital, but she wanted DeAngela to go with her.

Lauren missed her so much and she's like, "No, it'll be cool.

She'll get to see my nurses and the nurses will get to see her and it'll be like a sleepover."

- We got to the hospital and the next morning is when we found out the news.

- I get a phone call and it's DeAngela and I hear Lauren sobbing in the background.

I was like, what is going on?

And she said, "Lauren needs you to come right now."

They told her they were revising her estimate to three weeks, to three months.

- After we got that prognosis, first I called her mom, then her dad, her grandmother and the last one was Egor and while I was dialing his number, she's still sobbing, but before I even got Egor on the phone, she's like, "Ask Egor to marry me."

- I was in San Diego actually.

It was at Point Loma Naval Base and DeAngela called and she gave me the grave news that Lauren had three months to live basically, and her next word, is where she was kind of stuttering and kind of chuckled, I guess.

It's like, "Would you marry her?"

- I knew he was gonna say yes.

She knew that he was gonna say yes.

- My answer was yes.

- I walked in and Lauren was calmer and DeAngela said, "Lauren and Egor were getting married" and I was like, what?

- Deanne comes up and she said, "Lauren wants to have a wedding" and so I said, "Really?"

I said, "With who?"

- Egor was a great guy.

He was always just there for Lauren no matter what.

- She had said, "This was in my bucket list" and I said, "Well, what bucket list?"

And she said, "Well, it's in my blog."

And I said, "You have a blog?"

And so she told me the name and that was really hard.

- The blog was called "The Not-Dying Girl."

- "The Not-Dying Girl."

- "The Not-Dying Girl."

- "The Not-Dying Girl."

(chuckles) (bright music) - I think Lauren started out for her to have some sort of, where she could put down words and feel better, but it ended up being to something other people can read and maybe give them a little hope.

- She would write about some of the organizations that were helping cancer patients for pediatrics and also doing research.

- There are very few new drugs to treat children's cancers.

The research has gone along at a very slow rate, partly because drug research is so expensive.

- Only 4% of the research dollars for cancer from the federal budget goes towards pediatric cancer research.

- Children's cancer gets much less attention, because there are many fewer hospitals and many fewer cancer doctors and much less advocacy.

- Now to an update on the story of an Elk Grove woman who took us along on her fight against cancer via her blog, thenotdyinggirl.com.

- Lauren McCullough is living her life fiercely.

That's the word that keeps coming to me since I have been reading the entries on her blog.

You named your blog "The Not-Dying Girl."

- Yeah.

- And that was because?

- Basically I obviously don't feel like I am dying, but they're not going to cure me at this point, because just the research isn't done on childhood cancers.

If my physical body dies, I wanna leave behind a legacy and the awareness behind it.

I'm not gonna let cancer get the best of me.

I am not gonna let this win.

It's a war that we are gonna win together if we spread the awareness.

- Most of us would be totally overwhelmed by cancer and cancer therapy, but she had the added energy to continue her advocacy and worked hard on her bucket list.

- Her bucket list, I read the thing.

There were a lot of interesting little things on there.

- I don't know how many things were on the bucket list, but I know, number one was obviously wedding.

Another one swimming with dolphins.

I think it was just meeting Chef Ramsey, but she actually was able to go on his show.

So that was pretty awesome.

The helicopter ride, but the number one thing that we had to get done was our wedding.

- Lauren had her laptop and she started looking at wedding dresses.

- From the dress shopping, to the decor, we did all of that in the hospital.

- Cakes and bridesmaids dresses and wedding bands and she just had a mission.

- Being able to fulfill this bucket list item, might have been something proving that, you know, cancer wasn't going to control her, that she was gonna make sure she was gonna get her plans done, whether it wanted her to or not.

- She was on a hundred percent oxygen and she was not doing well.

She was having difficulty breathing.

- At night in the hospital she was on, you know, the oxygen and so she'd go to sleep and her oxygen level would go down, (machines beeping) machines would go off, start screaming and so I'd have to wake her up and I just said, breathe, inhale through your nose, breathe and then it would go up a little bit and then it'd go down.

- I was with her and they told her that things look worse than they had originally thought.

So she decided that we were having the wedding as quickly as possible.

She called Egor and he checked with his commanding officers and they said that the soonest that he could fly up here was in three weeks.

- And I said, "I'm not sure she's gonna make it" and Deanne said, "I'm not sure either, but we're gonna plan this and go forward."

- But the radiologist went back and looked at her case and he said, "I can do this, I can treat her to give her more time."

She ended up having two weeks of radiation in her chest and in the meantime, wedding plans kept going.

(bright music) She wanted a beachy style theme.

- She wanted those cool colors.

She didn't want it to be extravagant, you know.

- She wanted to have a dress that was very flattering to her figure.

We knew something that was sleeveless, strapless, something that would hug her body.

So we had picked out a few that we thought she might like and then the next day, David's Bridal brought it out to the hospital.

We had connected with Summer Sanders after her first treatment.

So when Lauren was at the hospital to try on the gowns, Summer happened to be in town and wanted to visit Lauren.

So Lauren said, "Well, I'm gonna be trying on wedding dresses, but if you'd like to come, you're so welcome."

So we had Summer there as well as her doctor and nurses and two people from David's Bridal and me and DeAngela and Egor's mom.

So we were all there with Lauren trying on dresses.

- She tried on the last dress and it was this lace mermaid style dress with buttons down the back, so beautiful.

She made sure that that was last because she was like, "Yeah, I'm pretty sure you know, I'm gonna like that dress."

- Three weeks.

Yeah, we got it done in three weeks.

(gentle bright music) I wanna thank everybody for joining us this enormous monument in my life and Lauren's life.

- Three weeks planning this, I know we've been pretty, you know, it's been hectic.

(bright music) (bright music continues) (bright music continues) This has been the best day of my life so far and I plan on having as long a life as I can and even if it's the three months that they've told me it is this, I'm so glad that everyone could share this with me.

(bright music) (gentle lively music) - Today is actually the fifth anniversary of the, when we had the wedding five years ago.

I think about it a lot, life would be for me a million times better if she was still here.

- No child should ever have to die of cancer.

No child should have to go through chemotherapy and be unsuccessful.

- No one could fix her.

There was nothing that's been discovered.

- What we need are more families to point out the discrepancies between childhood cancer and adult cancer and to lobby our legislators to put more scientific research money into children's cancer research and to encourage legislation that motivates drug companies to pursue even the small markets of rare diseases.

- Lauren really wanted people to understand about childhood cancer and that it really does affect more people than we think.

She really wanted more funding into research so that other children wouldn't go through what she had gone through.

- That was her mission in the end, to get the awareness out of childhood cancer.

- And if we can do that, then I mean, that's a great thing that's bigger than what one person can normally do.

- Lauren is a reminder that every person deserves everything we can do to make them better and Lauren's legacy is that none of us should ever give up.

- She's still living and thriving and people are still reading her blogs.

That's just magical to me, to know that she's still influencing others.

- The Not-Dying Girl, absolutely.

She still lives within all of us.

- She was not dying.

She was living.

(bright music ends) (upbeat music)