Overcoming unique challenges faced by young adults with cancer


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A Q&A with Karen Fasciano, clinical psychologist at the Dana-Farber Cancer Institute, highlights the challenges and progress in treating the non-medical issues young adults with cancer face during and after treatment.

"Young adults have unique needs when coping with cancer," says Karen Fasciano, clinical psychologist and director of the Dana-Farber Cancer Institute's Young Adult Program in Boston. Her training and experience working in both the pediatric and young adult cancer settings bring a dual perspective to her work. "I can bring my clinical skills to each encounter but also the wisdom I have gained from each young person who has honestly shared their cancer journey."

CURE asked Fasciano a few questions about her work with young adults, a group defined as those diagnosed with cancer between the ages of 18 and 39; however, the program evaluates anyone who identifies themselves as a "young adult" to see if it is a right fit for them.

CURE: What are some of the emotional and psychological issues you see in young adults diagnosed with cancer?

Fasciano: Young adults (YAs) often experience disruptions in many areas including: identity, self image, role in family and career and education. Young adulthood is a time when many YAs are exploring both independence and intimacy at the same time as they are trying to assert control over their future goals. Illness can expose young adults coping with cancer to a need for dependence on others, a sense of their own vulnerability, and a struggle with managing the many uncertainties that come along with treatment. YAs also face, many for the first time, the existential distress that comes with a life-threatening illness. Peers may not be struggling with the same issues, so YAs may feel isolated in the processing and sorting out of these complex issues. Life disruptions, for any of us, require recalibration which often comes with emotional distress: anxiety, grief over what has changed and fear.

CURE: Are there common issues that young adults with cancer face that they may not be expecting?

Fasciano: When diagnosed, most young adults assume that they will want to celebrate at the end of treatment. They don't often expect that they will feel increased distress after cancer treatment is over. While this can be a difficult time for all cancer patients, young adults have some unique challenges. Transitions and changes during the young adult years are many and parts of the YA's environment may have changed by the time treatment concludes (friends have graduated from college while they are returning to finish degrees; entry-level jobs that they were on leave from may not look the same a year or two later).

In addition, the life structure and goals the YA had before treatment may not be feasible or desired at the conclusion of treatment. Getting back into a structure and routine and re-evaluating and sometime re-establishing life goals can take longer than the YA expected. Many YAs find that the end of treatment is a time when they process the impact of the cancer and the emotional reaction to the treatment in a different way. Although it is not fully understood why emotions can be so high at this time, my speculation is that without the physical demands of the daily routines of treatment, the YA has more energy to put into their emotional reactions.

CURE: What advice would you give in dealing with the emotional and psychological issues newly diagnosed young adults may face during and after cancer? Be conscious of nurturing your personal identity outside of your illness. Your life goals may have been disrupted. Setting short-term goals or focusing on expressions of your values can help.

Fasciano: Understand that the emotional demands of cancer require attention. Nurture these needs in the same way you will your physical needs.

Think about how you have coped with difficult situations in the past, as this may help you to identify your personal strengths as you cope with this challenge. However, be open to and seek out new coping strategies as the demands of cancer may require a variety of strategies.

Challenge yourself to clearly ask for what you need or receive help from others to identify what you need. As supportive as family and friends can be, they need your input. You are your best advocate.

Consider peer support from other YAs who have coped with cancer as many find this helpful.

CURE: Is it important for young adults with cancer to connect with other young adults in similar situations?

Fasciano: Many YAs find peer connections helpful and find that connecting with even one YA who has coped with cancer can help them navigate the experience and feel less alone. Connections can be in person or via social networking. As helpful as these interactions can be, for some YAs, talking or messaging others who have had a different experience with cancer or are in a different place in their treatment process can promote anxiety. Understand that although YAs with cancer share a common experience, it might not the same experience as yours.

CURE: What are some of the future directions you see in treating young adults with cancer? What are some advances you predict we'll see in this field?

Fasciano: Our YA program is looking at innovative ways to deliver emotional care to the YA population. We are interested in understanding what kind of support is most helpful to YAs and in what effective ways that support can be delivered to this population. We are finding that using technology, social networking and peer support can be an important addition to structured counseling interventions. All YA deserve education and psychological support to address their distress but also to promote resilience and growth.


Do you talk to your doctor about cost of care?


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Cost is one of those "difficult conversations" between a patient and a physician, right up there with end-of-life discussions. Does that surprise you?

An article posted online from the Journal of the American Medical Association addresses the issue of medical cost in "First, Do No (Financial) Harm."

"... seemingly simple decisions that physicians make about testing could directly lead to thousands of dollars in out-of-pocket costs," the authors write, noting that physicians shouldn't assume that high medical costs are a known and unavoidable fact of life for all patients. The article encourages physicians to optimize care for individual patients in regards to cost, a strategy used commonly to treat cancer. The article is geared toward a general medical audience, not specifically cancer, so the examples it provides may not apply. However, the overall theme is that physicians should have a financial conversation with their patients, including if patients are worried about cost and are understanding the financial ramifications of screening and treatment.

"Too often physicians choose less than ideal options for their particular patients not due to a lack of caring, but rather a lack of knowing. This includes not prescribing generic or other insurance-covered drugs when appropriate. Lack of awareness about the opportunities to provide higher-value care should no longer be an allowable excuse."

While the article is geared toward physicians having that financial conversation with their patients, this should also encourage patients to initiate the discussion. Asking for lower cost treatment alternatives, generics or making sure their doctor works within their insurance plan are conversations that patients shouldn't be ashamed to have with their physicians.

At the annual meeting of the American Society of Clinical Oncology this year, a study examined how likely insured patients were to talk to their physician about treatment cost. Nearly half of the 119 patients surveyed expressed a desire to discuss the issue, but only 21 percent had actually done so. Of that 21 percent, half felt the discussion helped lower their treatment costs.

In another study of women with breast cancer, 94 percent believed cost should be discussed between patient and physician, but only 14 percent reported ever having the discussion.

"To provide truly patient-centered care, physicians can live up to the mantra of 'First, do no harm' by not only caring for their patients' health, but also for their financial well-being," the authors conclude.

Do you discuss cost with your physician? And does cost affect your treatment decisions?

Stay tuned for more on this subject. CURE is producing a supplement on the cost of cancer care later this year, which will include tips and resources to help manage the financial burden of cancer.


Abraxane combo extends survival in advanced pancreatic cancer


Pancreatic cancer is an aggressive, hard-to-treat disease, especially once it spreads outside the pancreas. Unfortunately, about 80 percent of pancreatic tumors are diagnosed at stage 4. Because of the nature of the disease, even small gains are cause to take notice.

At the 2013 Gastrointestinal Cancers Symposium, results of the MPACT study, a phase 3 international trial that examined Abraxane and gemcitabine extended overall survival by more than 7 weeks when compared with gemcitabine alone.

Abraxane, called nab-paclitaxel, is a form of Taxol which is encased in a protein and is given intravenously. This formulation helps reduce side effects, such as severe allergic reaction, and the protein albumin may make it easier for the active compound paclitaxel to reach cancer cells than the camphor oil used in traditional Taxol.

Daniel Von Hoff, lead investigator of the MPACT study, presented the results at the conference as a late-breaking abstract. The study included 842 patients with newly diagnosed metastatic pancreatic cancer. Researchers found that the combination increased the median overall survival by almost two months (8.5 months compared with 6.7 months), meaning that half of the patients in the Abraxane arm were alive at 8.5 months.

Von Hoff noted that the benefit of the Abraxane combination over gemcitabine alone increased over time. At the one-year mark, 35 percent of patients taking Abraxane were alive compared with 22 percent in the gemcitabine-alone arm. Although only a small percentage of patients were followed to the two-year mark, the survival benefit had then doubled (9 percent versus 4 percent). The effect also stretched across various subgroups, even those with poor prognostic factors, such as extent of metastases. The poorer the prognostic factors, the more favorable the addition of Abraxane, Von Hoff said.

Patients who went on to second-line therapy after progressing in the MPACT trial also did better if they had been treated in the Abraxane arm. Although side effects were seen with the combination, including fatigue and peripheral neuropathy, more patients in the Abraxane arm were able to complete their treatment, hinting that it was more tolerable than gemcitabine alone.

Von Hoff predicted that the combination could become a backbone in new regimens for advanced pancreatic cancer.

Philip A. Philip, an oncologist with Karmanos Cancer Institute in Detroit, led the discussion of the study and also proposed Abraxane should be considered with other combinations, as well as in earlier stages of the disease.

"The rational in developing nab-paclitaxel in pancreatic cancer was based on hypothesis largely related to targeting the stroma," Philip said.

Recent studies have shown that one reason pancreatic cancer may be resistant to standard treatment is the stroma, a matrix of cells and molecules that are tightly knit together around the cancer. If Abraxane can weaken the stroma, gemcitabine may have a better chance in getting to the tumor cells, which could explain the synergistic effect researchers are seeing.

"I strongly encourage the investigators to grab this opportunity and go back to the lab to determine the molecular basis of this clinical benefit and its association with any biomarkers, such as SPARC." Research has shown that pancreatic cancers overexpress a protein called SPARC, which may attract Abraxane molecules and subsequently may increase tumor response to the drug. Philips called it an "invaluable opportunity" in developing future trials for this disease.

Celgene, the company that produces Abraxane, is planning to submit the drug to the FDA for approval for this patient population by mid-year. Abraxane is already approved for advanced lung and breast cancers.


Joanna Montgomery's video story: It's Cancer, Baby


Recently, I've been following the journey of Joanna Montgomery, a new mother recently diagnosed with stage 3 fallopian tube cancer. Produced by, the short videos detail her life as she and her husband care for daughter, Grace, while she undergoes treatment for cancer.

After a high-risk pregnancy, Joanna gave birth to a healthy baby girl. It was during the c-section that her doctor noticed something odd on her fallopian tube, a mass the size of a softball.

"I don't think it's cancer," the doctor told her, it may be twisted. "Cancer? Why would you even say that?" thought Joanna.

The day after they brought Magnolia Grace home she learned it was malignant. "Here we were holding this six-day old baby, who is so perfect, and it just seemed so surreal," she says in the video. "We had been so happy and excited and it just seemed like a punch in the gut."

Shortly afterward, Joanna had aggressive surgery and chemotherapy. "If you had asked me five years ago what I would do if I had cancer, I might have said that I'd first try to address it holistically," she says. "However, with a new husband and a new baby, I wasn't going to take any chances." Joanna underwent a full hysterectomy and began treatment, while also making holistic lifestyle changes.

Her oncologist leveled with her and said her chances were 50/50. "On paper it might be 50/50, but I think it doesn't take into account all that I have to live for," she says.

Shortly after her diagnosis, Joanna started a blog called to allow friends and family to follow the family's experience with cancer and bringing home Grace.

"Once I started blogging, I started experiencing two things: One, an instant community of people - others fighting cancer and otherwise touched by cancer - who knew exactly what I was going through," she says. "Second, I realized that I was helping others by sharing my experience in real-time. And this realization came with it a sense of responsibility - to be mindful and positive, as others were listening. "

CaféMom has produced the series of videos. I've included Episode 1 below. They run about five minutes.

Take a few minutes to watch them and let us know what you think. Joanna is incredibly honest in the videos and is open to taking questions from other patients, survivors and caregivers.


The big news from the American Society of Hematology


There were several big studies that were presented at the 2011 annual meeting of the American Society of Hematology, including many early phase studies in lymphoma, leukemia and myeloma.

One of the surprising studies that came out included a phase 3 study of a drug that was withdrawn from the market last year called Mylotarg. It appears that it may have a second life after researchers tweaked the dose for older patients with acute myeloid leukemia.

Mylotarg, also known as gemtuzumab ozogamicin, was approved back in 2000 for relapsed AML, but was withdrawn when follow-up studies showed the drug did not improve response rates and also increased the risk of a rare, but life-threatening liver complication called VOD (veno-occlusive liver disease).

A French group tested the drug in a phase 3 trial using a modified dosing regimen that was easier on patients, which reduced side effects and significantly improved survival. Newly diagnosed patients aged 50 to 70 years who received standard chemotherapy with 3 mg/m2 three times a week lived longer than patients on chemotherapy alone (19.2 months versus 34 months).

"With the lower dose, we have less toxicity ... and we have more efficacy," says Sylvie Castaigne, MD, lead investigator of the ALFA study. She said this recent study included fewer deaths from VOD than in the past studies, but that patients also experienced low platelet counts, however that side effect was manageable.

Several ongoing trials with Mylotarg may show the drug still has a place in AML treatment. The drug's maker, Pfizer, is waiting for additional study results before determining whether to resubmit the drug to the FDA for approval.

"At this point, we are trying to better understand the data out there in hopes that they indeed look as good as we would like them to look," says Mark Shapiro, MD, PhD, a senior director of global medical affairs with the drug company. "Pfizer is definitely interested, the issue is what can we do with this data."

Because the drug has been withdrawn, it is typically not available to most patients. However, it is still being studied in clinical trials. Additionally, there are other studies looking at a second-generation drug called inotuzumab ozogamicin.

You can read more from ASH from Dr. Anas Younes (Studies highlight progress in lymphoma, pose more questions) and other stories on lymphoma, myeloma and leukemia in our News section.


No one deserves lung cancer


In memory of Sister Elise

This past weekend, Lena and I went to the inaugural Free to Breathe 5K in Dallas. The event boasted more than 800 participants (and more than 600 runners/walkers), which is not too shabby for a first-year event.

Free to Breathe is a lung cancer organization that hosts these events all over the country. Recently, it has also joined with the National Lung Cancer Partnership.

The event held a special place in my heart because my great aunt, Sister Elise Todd, who I was named after, died of lung cancer a few years back. I was working for CURE when she was diagnosed and knew the prognosis would be bad. She went through her treatment and called herself a survivor until her recurrence a few years later. The disease took her in 2008.

As you looked through the crowd on Saturday, you could spot the survivors. But unlike other cancer runs I've participated in, there weren't a lot of survivor t-shirts being worn. No crowds of pink or blue; I think I counted about four green shirts. One was Charles, who spoke to the crowd at the beginning of the race. He told of being diagnosed with prostate cancer, and on an incidental scan, they caught his lung cancer early. He told us he was a non-smoker.

It seems that many survivors feel compelled to share whether they were a non-smoker or not because we have done such a good job promoting smoking cessation and the link between tobacco and lung cancer. Unfortunately, this has also created a stigma and a sense of guilt or blame for the patient.

At the race, I had overheard someone mentioning that a lung cancer survivor instead tells people she's had breast cancer to avoid the stigma of lung cancer. Thankfully at events such as Free to Breathe and other lung cancer-centric meetings, survivors have a voice and can proudly say they've beaten the disease.

I won't tell you whether Sister Elise was a smoker or not, because it doesn't matter. She was a lung cancer patient, and she didn't deserve lung cancer. No one does.

Lung cancer is one of the most common cancers and one of the most deadliest, but it lacks the research and funding of other cancers--one of the problems organizations such as Free to Breath is trying to correct. And we are making progress. A new treatment for a subtype of lung cancer, primarily found in non-smokers, was submitted to the FDA for approval just this month.

We're tackling lung cancer, probably more than any other cancer, with a three-pronged approach: prevention, screening and treatment, and rates of lung cancer in the U.S. are decreasing. So, with these inroads, although minor, let's hold our tongues when we want to ask: Smoking or non?

What limits our success for lung cancer is not the lack of ideas--we have plenty of ideas-- it's the lack of funding. To get funding, you need awareness and you need events like this." –Joan Schiller, president and founder of the National Lung Cancer Partnership, Deputy Director Simmons Comprehensive Cancer Center at University of Texas Southwestern


Donating 10 inches of hair takes a weight off my shoulders


In January, I made the decision to donate 10 inches of my hair to the Pantene Beautiful Lengths campaign, which the American Cancer Society will eventually use to make a free wig for someone who has lost their hair to cancer.

my hair donation

It wasn't a hard decision (you can read why I decided to donate my hair in a previous blog "Giving up my hair"), but it did make me curious to know what happens after I mail that big, thick ponytail via FedEx to somewhere in Ohio.

I talked with Marisa at the American Cancer Society, and she answered a lot of my questions about the process and shared some interesting facts with me. (You can also get more information on hair donation at

Once the ponytails are received, they are sent to a sorting facility called HairUWear, which transforms the donated ponytails into wigs. It takes about six to eight ponytails to create one wig, so the demand is much higher than the supply. The hair is then colored (which is why donated hair cannot already be colored or more than 5 percent gray) and styled.

Once the wigs are created, they are shipped to out to 12 ACS division offices around the country. Patients who lose their hair from cancer treatment are able to request the free wigs through the ACS offices (either their local office or by calling 877-227-1596). Unfortunately, she stressed that there is a limited supply of the wigs because of the amount of hair needed.

To date, the Pantene/ACS partnership has given away more than 63,000 wigs and has received about 208,000 ponytails.

While most people think of Locks of Love (a non-profit that offers free and discounted wigs to children and young adults with alopecia) when the topic of hair donation comes up, the Beautiful Lengths campaign is quickly gaining visibility. And additional efforts to promote the campaign by the ACS and Pantene are in the works.

Mass hair donation events are also being scheduled across the country. Last month, WLBT, a news station in Jackson, Miss., hosted a hair-donating event, which aimed to break the Guinness Book of World Records for most hair donated at once - a record the group broke in 2007 when more than 800 people donated 100 pounds of ponytails, which were clipped and shipped. Unfortunately, I hear they missed their goal this year, but were still able to send off 88 pounds of hair.

Marisa also shared some comments with me from patients who received wigs through the ACS. It truly is remarkable how impactful these "cranial prostheses" are to patients. One woman said that having the wig during treatment gave her the courage to take her nine-year-old son to his first day of school that year.

With comments like that, I wish I could donate again tomorrow.


How much survival is enough?


Yesterday, the FDA approved a new breast cancer chemotherapy called Halaven (eribulin). It was tested in women with metastatic disease that had several courses of chemotherapy already. This is a pretty hard-to-treat patient population, and Halaven extended survival by a median of 2.5 months.

When we published yesterday's blog on the drug approval (New drug approved for breast cancer) we got a few comments on our facebook page about it (

Comment: Just two and a half months? I pray to God my BC does not come back if that's the best they can do. :-(

It is a scary thought. All the excitement about a new drug that does extend life, and then we hear it's only about 3 months. Without the drug, the median survival was about 10.6 months, with it, 13.1 months. Not something you want to hear if you have metastatic breast cancer. You want a cure, and rightfully so.

But ... it's only the median. There are women who lived longer than the 13 months, but then some women did not live as long. It's also a trade-off with the side effects.

It's also extra time. I think it's ironic that we ran Suzanne Lindley's blog about living with metastatic colorectal cancer (Three months of it worth it?) a couple of weeks before a drug was approved that extended life about three months.

Suzanne talked about hearing an oncologist at a medical meeting say, "Three months - why bother?" She responded by explaining that in late 2004 she was planning her funeral, but then she discovered a new treatment option that has worked for her. She's "hitchhiked" on various treatments over the years that have given her a month here, a year there, and has streatched it out for more than a decade.

Of course, Suzanne's story isn't typical, but it does give us hope. Hope that three months may mean another milestone or another memory. It could also mean that it buys a patient time until a new clinical trial comes along or another drug approval.


When the “new normal” doesn’t feel normal at all


I came across a recent blog on how the after-treatment phase (or re-entry if you want to compare it with a NASA moon landing) can actually be more complicated and fraught with more emotional issues than the actual treatment phase.

"Broken," a post from ChemoBabe, detailed what so many other survivors have felt once treatment ends.

"Maybe it's self-pity talking, but I feel like everybody is sick of my cancer and is ready for me to move on," she writes. "When people see me these days, they say two things. First: 'Wow! Look at all your hair! You look great.' And, 'How are you feeling? Are you getting back to normal?'"

After nine months, she says she didn't just put her life on hold during that time, she's changed and things aren't going to go back to the way they were.

The comments that appeared almost as soon as the blog was posted last night speak to the magnitude of the issue. Unfortunately, it's an issue that doesn't get mentioned a lot to newly congratulated survivors. They celebrate their last treatment and end of cancer and are expected to go along their merry way. When they get home, they discover that everything is not fine and are left struggling with these emotions--often at a time when the support network that rallied during diagnosis and treatment have packed up its bags and left.

We covered the psychosocial issues of the after-treatment phase back in 2008 with "Back to Normal." It may be time to revisit the topic again since it's such an important subject for new survivors.

Some things to remember:

1. The feelings of loneliness, sadness, and fear are normal and common among new survivors, but it doesn't make it any less serious. Just know that there are other people who have dealt with these emotions too and they would love to help you through this time in your cancer journey.

2. Just because you're no longer seeing your oncology team for treatment, it doesn't mean you can't use the social services they offered. Talk to your nurse who may be able to recommend resources, people to talk with, and advice. Survivorship clinics, which are popping up in several cancer centers across the country, may also have support programs for those out of treatment.

3. And this is for friends and family: When you're diagnosed and going through treatment, a patient may see a support network pouring out of the woodwork--friends, colleagues, parents of your kids' friends, your boss's sister, your medical team--all people who want to be there for the patient and help him or her get through treatment. Unfortunately, once the cake and balloons are gone after that final treatment, that support group may disappear when the patient, now a survivor, needs it the most. Don't think that everything is going to go back to normal once treatment ends. Continue to let them know that you're there for them.

How did you deal with the re-entry phase? Were you prepared for it emotionally? And if you have a few minutes, go to ChemoBabe's blog and share your advice on getting through this phase in her cancer journey. I think she would appreciate it right now.


Saying goodbye to someone I've never met


When we decided to do an article on how patients and survivors were using social media to connect with others, I had the perfect person in mind. Lauren was diagnosed a few years ago with metastatic breast cancer. She was vibrant, engaging, angry, inspiring, and sassy. She was angry that it took her so long to be diagnosed. She was angry that her life and the lives of her two sons and husband now contained terminal cancer. But she was also determined that it wouldn't define her and that she wouldn't stop living.

And that's what she did. She continued to live her life, but also began to be a beacon of sorts to people who were newly diagnosed and for those who loved someone with cancer. She "told it like it is," but she also was an inspiration to many who were looking for hope and support. She became friends with people all over the country, giving them words of encouragement. And she did most of it from her hometown in Tupelo, Mississippi.

You see, I never met Lauren, at least not in person. She was introduced to me through an old friend over the Internet. Although we didn't become close, I followed her struggles with the disease through Facebook and sent encouraging notes when I could. When I read the final draft of the "Friends in Need" article, I knew I wasn't the only one she touched through social media. When she mentioned that she received a get well gift from someone she had never met, I knew that she touched other people's hearts just like she had touched mine.

She shared so much of herself through this vehicle. Newly diagnosed patients were drawn to her, introduced to her via friends of friends, and she bared all about her treatment regimen, side effects, how she was feeling, both physically and emotionally, about the disease.

The article captured that:

But Groover doesn't fight alone. Besides her husband and twin teenage sons, she has a battalion of "sister" (and fellow) cancer survivors in her Facebook network who give and receive support.

Online, she monitors the health of her Facebook friends and shares her experience with others--frequently earlier-stage survivors fearful about some aspect of their own care. "I'm very happy to answer their questions," Groover says.

The network, in turn, provides her support. When she recently posted news of her liver metastases, cards, e-mails, calls, and more streamed in. "It will make you cry," she says of such outpourings. "Someone I've never even met sends me pajamas in the mail."

Sometimes in this job, I have to admit, we get too hopeful. There has been so much progress in breast cancer, and patients with metastatic disease are living longer and fuller lives each year. I truly believed that Lauren would be able to live a long and happy life with her chronic cancer, helping others, offering support and hope. If anyone could beat this disease, I knew it would be Lauren.

That's why I was so surprised when I heard she was looking into hospice. She had gotten on a clinical trial with an investigational treatment, but then it stopped working. I told her, "Those doctors better be working overtime to find you another treatment!" seriously thinking there had to be something else to try. Something would work. And then a couple days later, I saw that she had passed away. My heart hurt for her and her family.

While her Facebook page is private, the blessings and farewells came almost immediately. It seemed like hundreds of people visited her wall, and many were like me--had never met Lauren, but had been inspired by her. She was a truly remarkable lady, and I wished I had met in her person, to be near her energy and vibrant personality before this disease took her.

I wanted to share some of the photo outtakes we had of her from the "Friends in Need" article. The photographs of Lauren, I think, perfectly reflect her vibrant and loving personality.

Our mutual friend who introduced us said it perfectly: "What does not amaze me is her ability to reach and touch the lives of the numerous people who have had ... the privilege to call her 'friend.' I can't even say 'what a small world' that she would touch the life of one of my social club sisters ... Because the fact of the matter is that it has nothing to do with the fact that 'it's a small world' and everything to do with the fact that Lauren was the amazing woman that she was. I am a better person for knowing her."

We all are.