#CelebratingOthers with Nurse Tammara (Tammy) Jenkins!

Today is the last day of Childhood Cancer Awareness Month, and I could not end the month on a better note of sharing about and celebrating Nurse Extraordinaire Tammy Jenkins! Her whole being oozes making a difference to any child in need of medical expertise, especially those with cancer. Tammy has the knowledge, know-how and good old-fashioned common sense to help with even the most difficult cases of childhood cancer, and especially as the Medical Coordinator at Special Love's Camp Fantastic.

Caregivers are one of the chief pieces of a child's care, beginning with the parents, and then the wonderful nurses who are with the child and family throughout the treatment process. It's nurses like Tammy that exemplify what it takes to be a nurse of excellence bar none.

Tammy, age 55, was born and raised in Orange County, California, to Mark (an accountant/finance professional) and Marquise (a stay-at-home mom). She has one younger sister, Robin, who is a teacher in California; and a niece, Megan, age 22 and nephew, Jacob, age 18, who Tammy simply adores. She recalled an outstanding childhood and misses her entire family since they all reside in California and she living and working on the East Coast.

Tammy graduated in 1981 from El Modena High School in Orange County, CA, and began pre-med at UC Irvine. After one and a half years, she realized that she would rather be a nurse than a pediatrician because she recognized early on that she wanted to have more patient and family interaction (not as much being a doc). While volunteering as a candy-striper at a local hospital during this time period, she fell in love with nursing and changed course, and courses, since she had to apply and get into a nursing program. That proved some angst because Tammy had to redo her previous coursework, but she persevered (and loved all of it, even the "repeated" course work) and graduated with her BSN from California State University-Long Beach in 1987.

Her first job out of nursing school was at the Miller's Children's Hospital in Long Beach, CA, in general pediatrics. Incidentally, she orientated in Pediatric Oncology, but then was assigned general peds. After awhile, she asked to be transferred to Peds ICU where she honed her skills and loved every minute of her four years there.

Not one to "rest on her laurels," Tammy decided to go back to school to obtain her Masters' of Science in Nursing (MSN); this time going to the East Coast and graduating in 1992 at the University of Pennsylvania in Philadelphia, PA. She concentrated in Pediatric Critical Care and was trained as an Advanced Practice Nurse (APN). (I hope my blogpost readers will now know what all those letters stand after a nurses name now!).

Tammy recalled to pay for all her "new found" education, she worked four jobs at the same time! It's "easy" when you are young, right? Tammy's main job was working at The Children's Hospital of Philadelphia (CHOP) in the Peds ICU; as an instructor teaching nursing at Temple University; PRN jobs at other local hospitals and teaching once again at Holy Family College in Philly.

Tammy loved her new found city of Philly (way different than California according to Tammy), and loved working in this great city. However, while in grad school, Tammy did a special "preceptorship" or clinical rotation at The National Institutes of Health (NIH) in Bethesda, Maryland, and lo and behold, a position opened up as a clinical nurse specialist there. Her two day interview resulted in a job offer in July of 1994, so she moved to Washington D. C. to begin a new leg of her nursing journey.

If you ask Tammy, she claims "she's never worked a day in her life" because she loves her job that much. She worked for 12 years in Building #10 taking care of the most critically ill children in the DC Metro area and beyond. By 1996, she volunteered for Camp Fantastic because the NIH is so entrenched, and that the whole concept of sick kids going to camp intrigued Tammy. That first year she only stayed three days, but vowed that the following year, she would stay the entire week. She has not missed a year since then...

Do you see now how a good, no, make that a great nurse, is worth their weight in gold?

Those first years of camp were a huge learning experience for Tammy, beginning as a nurse volunteer. Within a few years she moved into a team leadership position, and then a few years later  became the Assistant Medical Coordinator.  Nurse Tammy is now the Chief Clinical Nurse Specialist for Camp Fantastic. Her patient screenings begin in April for the August Camp, and wrapping up the entire camp experience goes through September.

The rest of the year, Tammy works as a Scientific Officer for NICHD (NIH) in pediatric trauma and critical illnesses, plus research in those areas. She has held this position since 2006.

Tammy puts her heart and soul into anything she touches, so not only does she do an incredible job with Camp Fantastic, she is also involved with the weekend programs as well. Let's say she has simply fell in love with Special Love, the kids and families they serve, the entire staff and all volunteers. She really is the ultimate caregiver for many, and it's been her greatest joy in life.

In fact, in 2016, Tammy received the very first Light of Love Award bestowed to someone who shows unbelievable passion and stellar commitment to the mission of Special Love, Inc. The entire room was electrofied and standing on their feet when Tammy walked onto the stage to receive this much deserved award. Founders Tom and Sheila Baker were on hand to entrust her with this fine honor, and Tammy told me that she felt so honored and humbled and was blown away by the award itself.

Tammy reflected that this award has been the highlight in her life; that she was recognized and acknowledged for her passion in making a difference doing what she loves best, helping people. This night made her heart soar because her life's work was confirmed in that one moment! HOW-HOW!!

This purple loving gal with over 25 years at The NIH and over 20 years working Camp Fantastic/Special Love declared that she sees the best of humanity on so many fronts which restores her faith in making a difference on a daily basis. It's her life's mission and we cannot thank Tammy enough for what she has done for hundreds of children and their families for all these years.

When I inquired what she does for fun, she mentioned she loves to travel; watch movies and films; and likes to sing with the University of Maryland Student and Community Choir when time permits. She also loves to meet people and hear their stories, because as Tammy knows, everyone has a story to tell. She is a great listener, which when you think about it, makes her one of the best nurses in the world!

BSoleille! The bright side of #CelebratingOthers with Tammy Jenkins!

Terri

Below Photos provided by Tammy: first one in the night she won the Light of Love Award with founders Tom and Sheila Baker:

Christmas Market in Germany 2018

Tammy in the camp office

Mindy, Tammy and Angela at the Medieval themed camp

Random photo with flamingo gear with Nurse K

Tammy at the Children's Oncology Camping Association (COCA-con) in Fargo, North Dakota 2018

Bridal Shower with Liz Verrecchia!

A big shout of Congratulations for "The Best Daughter's" BFF Liz Verrecchia (and fiance' Stephens) on her bridal shower afternoon in Vienna, Virginia (Thanks, Rebecca). I am thankful they will be starting their new life together very soon (wedding in November) and that Liz can confidently cook and bake and entertain based on all the lovely gifts bestowed on them today (too bad Crate and Barrel is NOT a publicly held company...just saying). It was great meeting many meaningful people in Liz's and Stephens life this afternoon, and this bride to be, along with her guests and loved ones, are looking forward to their fall wedding in the Virginia countryside.

BSoleille!

Terri

Below photo of Liz with her Mom and sisters Caroline and Jackie

Olivia and Liz

MOB/Margaret and Liz

#CelebratingOthers with Childhood Cancer Survivor and Thriver - Julia Jones!

We are coming to the end of September Childhood Cancer Awareness Month, and today I am thrilled to highlight another awesome childhood cancer survivor and "thriver," Julia Jones, who loves life and appreciates every day. We had a great discussion recently, and she is happy to share her story.

So please let me introduce you to Julia, who turned 30 years old this past May. Julia revealed that in January of 1996, when she was six years old, she went on a trip to the Kennedy Center in Washington D.C., with her homeschool group for a concert there. Julia then remembered that she began having severe pains in her stomach while at the concert, and once she sat on her Mom's lap, her Mom felt the tumor immediately. Once home, she was promptly whisked to the ER for X-rays and other tests in which they inevitably came back indicating a tumor. Ugh! Every parent's worst nightmare for sure!

Julia explained that that tumor was identified as Wilms Tumor, which is a rare kidney cancer that is highly treatable and usually in one kidney. Shortly after her diagnosis, Julia's tumor was surgically removed and she also received chemotherapy and radiation from January of 1996 through September of 1996. Her surgery and all treatments were at Johns Hopkins Hospital in Baltimore, Maryland. Julia reported that she tolerated all her treatments very well, and that her Mom, Shari, found many resources and support for the entire family which helped tremendously throughout her cancer journey.

Julia was born in Maryland on May 4, 1989, to Shari and Dave Jones. She has two brothers, Jared, 31 years old, and Justin, 27 years old. She maintains great friendships with her protective brothers and is very proud of them in all their endeavors. While going through her treatment, it was Justin's toy dinosaur who got chemo right alongside Julia's chemo and that was all okay with all of them. She said she was home schooled up to third grade, then transitioned to the public schools and graduated in 2007 from Linganore High School in Frederick, Maryland.

Thankfully, Julia continued her education at Lebanon Valley College in Annville, PA (North of Hershey) and earned a Bachelor of Science in Psychology in 2011. She worked a couple of jobs in after school programs in psychology, then returned to school to earn her Master's Degree in Mental Health Counseling from Shippensburg University in 2016. She loves her field of interest because she knows she is helping people.

Currently, Julia works for Hoffman Homes for Youth in Littlestown, PA (near Gettysburg). It's a psychiatric residential treatment program for children suffering with mental health diagnoses and behavioral issues due to severe trauma, abuse, neglect and loss. She loves her job here and even does not mind the long hours worked each day.

When I inquired what she does for fun (we must admit her job is quite stressful), she said she loves to hike (she's close to the AT (Appalachian Trail); travel and volunteer with her Church: World Harvest Outreach. In fact, Julia and her Church, which she affectionately said is like family, are headed this coming Christmas to Tanzania to spend the holidays with orphan children at the City of Hope School.

She also claimed she loves giving back to others, and can empathize with so many people based on her own cancer journey. Julia said that some of her friends who really struggled with their cancer experience impacted her so profoundly (because she admitted that her cancer journey was mostly uneventful), that she decided that must help and improve as many lives as she can. I love this about Julia, don't you?

Amazingly, this green loving gal is so passionate about her job and always giving back that her "cup is overflowing with love,." This also includes her volunteering efforts with Special Love, Inc. with Camp Fantastic and other camp programs sprinkled throughout the year. Incidentally, Julia was a camper at Camp Fantastic from ages 7-9. Then during her teen years, she helped her Mom with Special Love weekends, and by age 20, she became a camp counselor and never looked back.

Julia is one busy compassionate and passionate young lady. I am honored and humbled by what she does each day; on the job, or in a volunteer role. She is also involved with Childhood Cancer Advocacy at every opportunity (lobbying on the Hill/speaker on Post Traumatic Growth). She is very inspiring and most recently began drawing and painting; giving most of her pieces away to family and friends. Bravo, Julia!

BSoleille! The bright side of #CelebratingOthers with Julia Jones!

Terri

Photos from Julia:
NOTE: Julia's various hair lengths - from St. Baldrick's events (shave heads to raise funds for various cancer programs)

A Throwback to 2004 - LIVESTRONG!

As we all know, when any child is diagnosed with cancer, it terrifically effects the entire family. Some days are good, and some days are not, it's just the way it is in each battle(s). But sometimes, that cancer patient may feel good for a few moments or an hour, and then the family capitalizes on that special time together.

My photo today depicts a "good" hour when Ryan felt good enough to pose and smile for this photo. This was a couple of months before we headed to Duke University Hospital for his life-saving BMT (Bone-Marrow Transplant). He was mostly in a lot of pain due to surgery on his left deltoid on July 9th, but our family got on the LIVESTRONG bandwagon by proudly wearing our yellow bands (Bill and I still wear our bands faithfully each day since then). A huge Thanks to Bill Gawne who sent us the first batch of them when they first appeared on the market! We are still grateful for those precious days from 15 years ago...

BSoleille!

Terri

We Love a Great Guest Speaker at our Quilt Guild Meetings - Tonight with Nancy Bills

Typically I am inspired in all things "quilty" by the members of the Southern Comforters Quilt Guild of Bowie, Maryland. There is "sew" much talent in every member that nothing surprises me on how people quilt their quilts, or use beautiful fabrics, or try various combinations of colors and hues. It's all a process and I enjoy every minute of it.

But when we have a guest speaker, it's a dedicated hour (at least) to dive deep into what makes that person a stellar quilter, or the giving tips and tricks on various methods, or simply the education of what makes a good combination of blocks and colors in any quilt.

Tonight, we had the good fortune in welcoming Nancy Bills of Fayetteville, Pennsylvania, a terrific speaker and a "serious" quilter for the past 20 years. She said she designs all her own quilts, using traditional blocks but making them her own by the design  she uses, and perhaps, the setting she uses for the completion of a quilt top. Her quilts, however, are quilted by someone else (and fabulous I must admit!).

Not only were her quilts pretty awesome, she also gave the crowd tips and tricks from the kitchen; like using a Mr. Clean Magic Eraser to clean an iron from the use of sticky fusibles, using leftover batting on a broom to wipe down floors, and using unused zippers as elements in a quilt/pillow.

Nancy's favorite thing in quilting is her love of string piecing, the scrappier the better, and use of color in those "strings." A girl after my own heart, she admitted she doesn't read the pattern or instructions before she starts cutting, and changes stuff all the time, of course, making it all her own. The last part of her talk was turning vintage tablecloths into quilts or wallhangings. They were all quite impressive (those tablecloths), and Nancy encouraged us to take them out of the dining room drawers, quilt them, and to place them centerstage as a table topper or quilt for all to enjoy!

BSoleille! The bright side of our very talented guest speaker, Nancy Bills! Thank you for inspiring us to get back to our stash, think a bit "out of the box" and go for it!

Terri

Below photo of Nancy Bills and two of her great (favorite?) quilts:

Pineapple quilt using her string piecing methods

An edge of bed cover with her technique of showing off the stars in each round block!

Patriotic flags using doilies and fancy vintage pillowcase "ribbon and lace."

Southern Comforters Community Quilts Traveling to Laos with Courtney Doran!

A week ago, one of my NeedleOnFull clients' daughter, Courtney Doran, was headed to the country of Laos to work as a traveling nurse there; specifically in pediatrics (NICU too). I asked her Mom, Donna, as Courtney was planning her trip, if she wouldn't mind "slipping" a few quilts into her bags. She enthusiastically replied, "yes." The day before leaving, Courtney came by the house to take eight quilts to offer some of those kids/families in Laos a lovingly hand-made quilt by the Southern Comforters Quilt Guild of Bowie, Maryland.

My guild, as well as Courtney and her family, are thrilled for her to take the quilts and all the other supplies she took to help the families, kids and babies in Laos! You see, on days when you think the world is going "crazy", it's these stories that give faith back to humanity and the young people who are making it happen on a daily basis (we just don't hear about it like we should).

So cheers to Courtney and the families and kids she will meet in her work as a nurse and travels to Laos. I hope she make a difference in their lives, as I know they will in hers.

BSoleille!

Terri

Last Vestiges of Summer 2019

On the East Coast, there are just about two more hours of the summer of 2019. I hope all my readers had a good one, and enjoyed the warm weather, the sunshine and either a vacation or a staycation to turn it back and relax for a spell. It's by far my favorite time of year!

I am not sure if the weather is going to cool off yet, as the Mid-Atlantic forecasts temperatures in the high 80's and 90's this week, but we know fall is right around the corner. The "only" thing I like about fall, especially when the temperatures cool off a bit, is the chance to wear a warm sweater (notice I didn't mention a jacket or hat and gloves). For now, I will still bask in the glow of the warm sunshine in Indian Summer and enjoy each day as it comes as it's all we can do, right?

My photo below was taken by Helen Gruneisen at the Indiana Shores when I traveled there with my BG Girls Gone Wild Trip to the newest National Park (61st) at the end of August. It screams summertime to me for sure!
Did you notice the double wearing of glasses? Sunglasses and my readers (hey, it was a bright day).

BSoleille! The bright side of welcoming Autumn 2019 tomorrow! Sweaters anyone?

Terri

#CelebratingOthers with Special Love's Dave Smith!

The past couple of weeks, my Friday celebrating others posts have highlighted childhood cancer survivors and "thrivers" during this month of Childhood Cancer Awareness Month. I love hearing their stories of resilience and forging ahead toward a bright future, but today I am turning the attention to someone who has made a career out of helping others, most notably with all ages of cancer survivors!

I'd like to introduce you to Dave Smith,  56 years young, and a very energetic force behind Special Love's Camp Fantastic and beyond. He was on the ground floor (literally) when Tom and Sheila Baker arrived at the 4-H Center in Front Royal, Virginia, when he just 19 years old. That meeting with the Baker's, and John Dooley (Director at that time and a mentor of Dave's) changed Dave's life forever! If you believe in serendipity and perhaps a higher power, this was it for Dave. Hang on for a minute and I'll get back to this life-changing meet-up.

Dave was born and raised in Phillippi, West Virginia, with two sisters (he is a twin with one sister, the other a couple of years older) and parents who worked for Alderson-Broaddus College (now a University and once was a private Baptist school). His Dad was an Administrator in Public Relations and his Mom was the Director of Humanities coupled being an English/writing Professor there as well. In 1981 Dave graduated from Phillip Barbour High School and continued his education at A-B College, graduating with two writing degrees and a political science degree.

Dave's love of outdoors, plus his winning smile and attitude helped launch him a summer job during the breaks from college by working at the 4-H Center in Front Royal, VA, under the Director and mentorship of John Dooley.

When the Baker's arrived at the 4-H Center unannounced in late August of 1982, Dave happened to be working the last week of their summer season due to his college starting later than the other Virginia colleges and universities in the early 80's. After a summer of working in programming, Dave was doing some maintenance work when they walked through the doors and began explaining their idea of a camp for kids with cancer to Dave, and Director of the Northern Virginia 4-H Educational Center, John Dooley. The Baker's explained that they lost their eldest child, Julie, to Lymphoma in 1976, and wanted to start a camp like one Sheila read about in a magazine when a young girl with cancer got turned away at a New York camp.

The Baker's certainly impressed Dave (and John Dooley), but there was a mountain of work to get done to make this idea a reality due to the magnitude of such an ordeal. But, with such a strong conviction of "doing the right thing,"  who could say no? So John Dooley and the Baker's set out to do just that; have a camp for kids with cancer at the end of the 4-H summer season. It was named Camp Fantastic and 30 children with cancer attended the inaugural year in 1983 (it's always the third week of August).

Dave was so smitten by this wonderful idea of camp for cancer kids specifically, that he volunteered his time and efforts the first four summers of Camp Fantastic and never looked back. By 1987, at the age 24, Dave was hired as the Executive Director of the program. The ensuing years saw tremendous growth and programs that cover the entire year with not only Camp Fantastic, but family weekends, parent's programs and a sibling camps called BRASS. By 2007, Dave was the CEO, and last year became the Senior Director of Outreach and Programs, a position that showcases his wonderful talents!

When I asked Dave what is his favorite thing about camp; not missing a beat, he answered that it gives everyone permission to be silly and authentic for all involved, from the campers to the staff and everyone in between. Dave also finds the goodness in everyone he meets and loves to share positivity and seeing people connect. He is very service minded and gives back with his time and talents any chance he gets.

This blue loving guy with three sons, Andrew 18 years old; Bryson 15 years old, and Willie, 12 years old, is also very musical with singing (he's a baritone) and playing various instruments, mostly self-taught. His favorite genre is Big Band, and Dave does a mean impersonation of Frank Sinatra (his fav crooner) and Michael Bublé. He loves all music except opera. In fact, Dave has traveled with the pastor of his church to Vienna and Slovakia in the 2000's after teaching himself to play bass guitar and then Bluegrass Music to go on said trips to play in those countries (he's a very smart guy).

He's also very involved with the First Baptist Church of Winchester, Virginia, and plays gigs at nursing homes in Winchester and surrounding areas. He says music is a good outlet and he loves to have FUN with it, bringing joy to many folks - young and old!

In closing, Dave has volunteered and/or worked for Special Love, Inc. for over 36 years! I'd say he knows camps inside and out, especially Camp Fantastic! Our family met Dave over 22 years ago at a family weekend in Front Royal, and we will never forget how he made everyone feel welcome and helped us forget our "cares" for a bit (he's also very quick witted and funny; a welcome relief to weary parents of a sick child) to enjoy what camp has to offer, along with the coffee house hour which did wonders for our souls! Now that is surely something to be very grateful for: HOW-HOW!

To check out more Special Love events and information, please click: https://www.specialove.org/

BSoleille! The bright side of #CelebratingOthers with Chief Camper Dave Smith!

Terri

Photos from Dave's Facebook account - Below getting the crowd to sing and dance!

Dave with Cowboy hat from one of the first Camp Fantastic camps

Dave playing guitar at his church

Dave on left with Cody Douglas and Larry Chloupek

9/19/19 - A Good Day for a Crab Feast with InstallNET

How did you celebrate this iconic numeric date? For me/us, going to the annual InstallNET (hubby and son work there, and I used to) crab feast at Cantler's Riverside Inn in Annapolis, Maryland, was just the ticket for this day (and the weather and company was stellar as well). Marylanders love that Old Bay and vinegar on those crabs, and a cold beer certainly helps draw the heat from the Old Bay spice used liberally with each tray delivered to the table.

BSoleille!

Terri

Crabs and more crabs

Peaceful easy evening

Another Lookback on Ryan Tomoff's Cancer Journey - Summer 2004

I am/we are very thankful that September is not only the start of a new school year, but also earmarked as Childhood Cancer Awareness Month. "Going Gold" this month is "shouted" from the rooftops, and many buildings are lit up around the country in support of this great cause because advocacy and awareness is key to hope, and more importantly, finding a cure some day (they are close on a few cancers).

There are no easy answers on a lot of questions swirling around the entire spectrum of Childhood Cancer, and every diagnosis of any disease in children certainly robs them of their childhood and beyond. It's heartbreaking, really. Most families strive for "normalcy" in the most crazy times of treatment and long hospital stays.

My photo below shows how we tried as a family to bring a little "normalcy" in a chaotic world when Ryan relapsed for the second time in the summer of 2004 by bringing in our dogs to the hospital. Ryan could not leave, but with "special permission" and scout's honor that both pooches would be bathed and had their teeth brushed, they could come in to see Ryan for a short time. "The Best Daughter" was thrilled to be a part of the crew to get the dogs ready to come in for a visit to Georgetown, and Ryan was equally thrilled when they stealthily entered his room. They were very good visitors and made no fuss and never barked to disturb any other patients.

It was a good day for all of us!

BSoleille!

Terri

Photo of Ryan, Lucky, Wally and Olivia

I WON a Quilt!!! Thank You to Friendship Quilters of Linthicum, Maryland!

Do you believe in serendipity? Do you listen to the "whispers" in life? I cannot believe that I won this beautiful quilt from the Friendship Quilters of Linthicum last Friday. Interestingly enough, quilt guilds typically go around the county, even the state (luckily Maryland is "little" enough to to that) to sell raffle tickets of that year's raffle quilt. It's been a "thing" for a couple of hundred years...raffling off a quilt to raise funds. I always buy at least a book of tickets (generally 6 tickets for $5), and have for over 20 years, and so do most our guild members.

At our quilt guild's meeting last Wednesday, we had a member of Four-County Quilters from Frederick, Maryland, selling raffle tickets for their quilt as stated above. We got into a discussion of whether or not we knew any guild member ever winning another's guilds raffle quilt. We both came up short of thinking of a winner.

However,  by fluke, happenstance, or a woowoo moment, two days later I got the call that I won The Friendship Quilters of Linthicum's raffle quilt (they drew my name on Thursday night); not even 24 hours after I had that discussion with the women from Four-County Quilters. Is it a fluke or happenstance? It is definitely a woowoo moment for sure!

I just wonder what are the chances of that even happening after that discussion...the win after not winning anything, or knowing anyone else winning a raffle quilt in over 20 years? Where is that power? I think I have to chalk it up to serendipity and maybe, just maybe, a whisper into the world!

BSoleille! The bright side winning a beautiful quilt from another quilt guild's raffle quilt! A huge THANK YOU to the ladies of Friendship Quilters!

Terri

JUST TRYAN IT 2019

What I love about the JUST TRYAN IT Foundation is Kids Helping Kids and Families Helping Families! It's a win-win all around in volunteering for this wonderful organization, now in its 10th year in helping families with financial distress while their child is undergoing cancer treatment.

It was an early morning that my family and I, and "The Best Daughter's" BFF, Liz Verrecchia,  trekked out of our homes and to the Episcopal High School (a lovely and sprawling campus) in Alexandria, Virginia, for our volunteer duties. All volunteers had a pre-race meeting and then awaited for almost 175 racers between the ages of 5-12 (give or take a year) to arrive.

If you click this link, more info about the foundation and the impact they are having through the funds raised in each event will simply amaze you:  https://justtryanit.com/alexandria/

Every year we cannot believe how much inspiration we receive from the racers, their families and the sponsors. It's doing good work for sure! I am thankful that my family can volunteer at this awesome event each year and in multiple locations!

If local and interested in helping this organization, why not check out this link for their 10th Anniversary Party (Orange Crush Cancer Party) at Ivy City Smokehouse in Washington DC on October 12th, 2019.
https://justtryanit.com/dc-orange-crush-cancer-party/

BSoleille! The bright side of "it takes a village" to put on this race! And really, who is having more fun, the racers, or the volunteers?

Terri

Photos from this morning's kids triathlon

L-R: Outgoing executive director, Carrie Norry, new executive director, Maureen Colburn, and Founder, Mollie Darby

Liz Verrecchia "tattooing" their race numbers on each arm

Olivia/Ryan; Transition Volunteers

Helping with the bicycles

SpokesEtc helping pump up tires

Three friends...

Holding hands through the finish line!

Fall in Love 5K

We had a great start to our morning, and thankful to have participated in the 7th annual Special Love, Inc. 5K benefitting children and their families with cancer! When a child is diagnosed with a life-threatening cancer, it becomes a family affair from that moment on.

What I/we loved about this race/walk was the fact there were no timing chips or other race "accoutrements." There were, however, lots of cheerleaders and kind drivers in Washington, DC, who "let" us cross when we needed to and never got huffy. Maybe the early start helped with DC traffic. The course ran around the Washington Nationals Stadium and then down through the waterfront on the canal for we hoped 3.1 miles at the finish. However, some wrong turns (we were following the people in front of us) allowed a wee bit longer course for us (3.5 miles, but who's counting!). Many runners, walkers, strollers with babies and toddlers in them and puppies too. Everyone was welcome to come and show "the love."

A big HOW HOW to the Special Love staff, the many donors and volunteers, and Koo Lop Yuen who underwrote the sponsorship! It was a FANTASTIC event in a lovely part of DC! And Ryan Tomoff gave the pre-race remarks on how much Special Love means to him, our family and all the kids who attend either BRASS camp or Camp Fantastic each year.

BSoleille!

Terri

Below photo with Koo (on left)

Heroes in capes!

Ryan gave the opening race remarks and started the race with a bullhorn!~

#CelebratingOthers with Cancer Survivor and Thriver Brittany Ross!

I think having a feisty spirit  is key to "win", or "overcome" many battles, including the battle of childhood cancer. When I think of someone having a great feisty spirit, I think of Brittany Ross, now 34 years old and happily married and living in a Denver, Colorado, suburb. She is a true fighter and a wonderful young woman and it was delightful peeking into her life now after her battle with AML (Acute Myeloid Leukemia) as a teen, and when we first met.

Brittany was born in Baltimore, Maryland, the only child born to Alan and Nancy Ross, and raised in Montgomery County (Rockville/Gaithersburg, MD). She also has an extended family with older siblings born to Alan and Nancy from previous marriages, and according to Brittany, they are all one big happy family today, and Brittany is proud of every single one of them.

When I inquired about her childhood BC (before cancer), she said had a typical one that involved a lot of music, musical theater and dance. She said, gratefully, that she "grew up on the stage." But by the end of 8th grade, she started feeling ill. Brittany acknowledged that her symptoms of strep throat, bad colds, pink-eye, the flu and bronchitis seemed somewhat 'normal' until she broke out with shingles on the left side of her face the fall of her 9th grade year. That's basically when her brother-in-law, a physician, demanded that she be seen by an oncologist quickly because he told Brittany and her family that; "kids don't get the shingles."

Brittany, age 15, was then formally diagnosed with AML (at Georgetown University Hospital on December 12, 2000. She claimed she was very weak, her head pounded, she was dizzy and her sight became blurry. All signs she was suffering from something for sure, and in fact, once the blood results came back, Brittany had 67% leukemia cells racing throughout her tiny body.

She started treatment the very next day due to her diagnosis and the extreme amount of leukemia blasts in her blood. Three pediatric oncology doctors treated her at that time: Dr. Aziza Shad; Dr. Amal Abu-Ghosh and Dr. Bracho. She was hanging on for dear life at this point, and was hit very hard with chemotherapy because she was told she has a 5-15% chance of survival.

According to Brittany, she received the best birthday gift ever when she heard the news that she was in a full remission and completely cancer-free four days after her January 13th Sweet 16th Birthday (2001) on January 17, 2001,  Of course, this was declared after her initial induction with several more rounds of chemo following that declaration, and pounded with even more intensive chemotherapy the next year. It so happened that the drugs wiped out her bone marrow (Note: she did NOT have a bone-marrow transplant), and did NOT have any bone-marrow in her body for 275 days! This was a very dicey time for her and her family and the doctors at Georgetown when she had no cells to fight anything off. She claimed she lived on blood and platelet transfusions, IVIG and antibiotics. She could barely eat or do anything else as well.

By December/January of 2002, Brittany was told she would need a Bone-Marrow Transplant so the leukemia would not come back. She and her parents did their due diligence in finding a suitable hospital etc., but unfortunately for Brittany, the National Bone Marrow Registry could not provide better than a 4/6 match. This was too risky for Brittany and it was a 50/50 chance of survival.

Brittany made the toughest decision of her life at 16 years old when she said she would NOT go through with a BMT. She announced she was; "DONE" with chemo and hospitals and the whole lot. Who could blame her?'

In the next year, after a very slow and painful recovery of her marrow and blood, Brittany's feistiness grew exponentially along with her self proclaimed stubbornness/bull-headedness/and strong will. These traits enabled Brittany to catapult her entire brain and body and to restore it to good health one cell at a time. Truly, this is quite miraculous, but for those who know Brittany, she is one tough kid and put her mind to it to only get well!

Once she began the road to a full recovery, she began going back to school once again. It was not easy for her, but she graduated in May of 2003 from Mt. Carmel High School in San Diego, CA. (She and her parents moved out there to be closer to their other children and grandchildren that January).

The following few years for Brittany opened up a whole new world to her. She started going to community college but learned while there that she has a learning disability (Asperger's Syndrome) which made school very difficult for her to continue. She then moved to Colorado to learn to live independently from a special program called: College Living Experience. This school enabled Brittany to learn in an environment with difficult concepts, but was supported by tutors and living with similar students. By May of 2010, she graduated with an Associates Degree in General Studies. She also had a stint working for Walt Disney World as an hostess in one of their resorts which she loved.

By March of 2012, she had gotten a job as a temporary employee for a traveling exhibit called: "World of Wicked" at the Cherry Creek Mall in Denver, CO. This was when the play "Wicked" was all the rage, is Brittany's favorite musical, and she became the "in-house" Wicked expert. It was while working at the mall she met her husband, Patrick McClellan, as he was working mall security at the time. They were married on September 28, 2013, at The Lionsgate Center Dove House in Lafayette, CO.

Brittany, who loves the color purple and ANYTHING sparkly, revealed to me that the last six years have been awesome! She's had some health challenges as many survivors have, but she married the best husband there is and cannot believe how lucky she is to have met this wonderful and supportive partner in life.

Patrick is now a computer systems engineer in IT and Brittany is a motivational speaker for St. Baldrick's.  They give back to various cancer organizations around the State of Colorado: Curesearch; Miracle Party; LLS; Make-A-Wish and a bit with Alex's Lemonade Stand. They also indulge their shetland sheepdog, Princess (6 years old). They love to dance; swing and tap, and he's her Fred Astaire and she's his Ginger Rogers.

Patrick also has written a children's book inspired by his wife Brittany: https://www.amazon.com/Prince-Norman-Patrick-McClellan/dp/1497585694

They plan on dancing their way through life together one step at a time...with music and a song in their hearts.

BSoleille! The bright side of #CelebratingOthers with Brittany Ross!

Terri

All photos provided by Brittany - below: Patrick and Brittany in dance class

On their Magical Disney Honeymoon

Wedding Day in 2013

Keynote Speaker at the LLS Gala in Florida in 2009

Brittany and her Mom, Nancy, at Georgetown University Hospital 

At home recovering between rounds of chemotherapy