OKAY TEAM SCARLETT...IT IS TIME TO SADDLE UP...WE HAVE MONEY TO RAISE TO FIND A CURE!!! This is our biggest year yet as we work our tails off to meet the Baltimore Heroes goal of $1 MILLION DOLLARS!! We are only $171,414 away from that goal and with the rallying of the phenomenal support group that our honored children have, I believe WE CAN DO IT!!! The extra exciting part this year is that our own little fighter has anxiously been awaiting this event, so that she can participate in donating her OWN very cherished long, wavy locks! That's right, Scarlett is signing up to donate her long braid that she has coveted for so long! She is hopeful that 'her braid' can help raise money and save another child's life like her own. We are so proud of her!
I can't begin to find the words to describe how proud I am year after year of our team of shavees, volunteers and supporters, a.k.a. HEROS! For the last 4 years, our team has shown impressive dedication to raise money to help find a cure and save countless children from losing their lives each year to their #1 killer, cancer. In just 4 short years, Team Scarlett has raised $141,634...PHENOMENAL!! Every one of you made it possible for Sean and I to reach our personal goal for our team of raising over $100K and we THANK YOU from the bottom of our hearts. Well, once again we are back at it and we are going to hit the ground running to increase the size of our team of shavee heroes and have our best year of donations yet! Sean and I have raised our personal goal to help Team Scarlett cross the $180K mark this year. I know we can do it again and then some...the kids are counting on us! The most important thing in all of this for Sean, Gavin, Brayden and I is that you are all working incredibly hard towards saving our own sweet girl from this monster that still haunts our home.
We can't thank everyone enough for their incredible support, empathy and drive for us and the hundreds of thousands of children that suffer intensely each year. So, Team Scarlett has teamed up to have our heads shaved – to stand in solidarity with kids fighting cancer, but more importantly, to raise money to find cures. Please support us by becoming a shavee and raising money to support your cause, becoming a volunteer at the event or simply supporting our team efforts with a donation in support of a particular shavee/volunteer or to Team Scarlett. Did you know that kids' cancers are different from adult cancers? It's true. And childhood cancer research is extremely underfunded. This volunteer-driven charity funds more in childhood cancer research grants than any organization, except the U.S. government. Every dollar makes a difference for the thousands of infants, children, teens, and young adults fighting childhood cancers. Your gift will gives hope to families just like ours.
Below is our story and a little update of where we are today...
From a mere routine 2-year-old birthday well visit where routine bloodwork was drawn and coupled with the fact that my mother's intuition told me to talk to her pediatrician about her continuous ease of bruising, we found ourselves blindsided with test results that Scarlett was ill with AML M7 Leukemia on July 8th, 2011. In the following days, we found ourselves living at Johns Hopkins among a whirlwind of tests, surgeries, blood transfusions and the immediate start of approx. 6 months of in-patient, extremely aggressive chemo drugs to begin her battle of fighting off this horrific monster that entered our peaceful world. No one deliberately sets out to take life for granted, but it is human nature to get caught up in the everyday stresses and routine of life. Then the day comes when your whole world as you know it is ripped from you in an instant when you get the phone call that tells you that the dreaded 'C' word has invaded your home...and worse yet, it isn't you or your husband, but your tiny, defenseless, innocent baby. So, armed with the strength of our faith in God to pull us through, the support & prayers of our loving family and friends and the amazing doctors & nurses at JH Pediatric Oncology, we began our long and perilous journey to wage our war against this nightmare.
Scarlett is such an amazing, little soul and fortunately already had the spirit of fight built within to begin this battle. After her 1st round of incredibly intense chemotherapy, we held our breath to see if her body had responded in the way that we fervently prayed for. We needed her bone marrow to show that there were no 'detectable' cancer cells under the high sensitivity tests run at Hopkins and SCCA in Seattle...and YES, the test was clear! This allowed Scarlett to forgo needing a bone marrow transplant and if her bone marrow remained 'undetectable' after every chemo round, she would be able to continue on the plan of a total of 4 rounds of in-paitent chemotherapy (decreased from the original plan of 6 rounds!) She suffered for months on end with multiple infections, feeding tubes (and countless painful re-insertions of it through her nose/throat), intense nausea and vomiting, horrific chemo diaper rash and sores, severe mucousitis (open, weeping sores covering the inside of her mouth and throughout her entire GI tract), hair/eyebrow/eyelash loss, finger/toe nail loss...just to name a few of her daily nightmares. We had some incredibly scary moments and days throughout treatment and it can only be by the Hand of God that she never ended up in the PICU as so many children do. She had an incredibly hard time with losing her hair and we should never underestimate that a 2-year-old cannot feel this loss as an adult would. She was very sad and self-conscious about it for weeks on end and would try to hide her face/head when anyone would enter the room...it was completely heart-breaking for us to watch on top of everything else she was going through. By the grace of God, she made it through all 4 rounds of chemo and recovery and the cancer continued to be undetectable throughout. She finished treatment and was able to come home to begin her out-patient maintenance care on December 10th, 2011, just 1 day after of our 5 month anniversary of admittance to JH. She is considered to be in remission at this stage, but we have a 5 year waiting period where the potential for relapse is always there. The 2-3 years is where the relapse risk is greatest and we don't expect to be getting alot of sleep due to worrying, especially on the nights leading up to her continuous Oncology checkups. Besides relapse, Scarlett, like every other child who endures these toxic drugs during treatment, is at risk for life for other cancers, heart failure and a host of other life-threatening illnesses that could rear their ugly heads at any time. However, we realize that it is out of our hands and what will be, will be, so we will spend our days savoring each moment and enjoying the blessings that God has bestowed upon us. We also plan to work very hard to raise awareness and research funds, so that scientists can break the code for curing children and adults of these cancers. We should by no means take for granted that we will never be on the receiving end of the fruits of this research.
A little update 4 years later on our little miracle...
We just celebrated our 4 year anniversary rejoicing Our Savior's Birth at home this Christmas...it is hard to believe that we have come so far! So much has happened in 4 years, including the arrival of a new baby brother, Brayden, which has been the highlight of Scarlett & Gavin's lives! She started 1st grade this year and is LOVING school, her teacher and all her new friends. She feels proud to finally be in the same school as big bro, Gavin. She is very active in gymnastics and hip hop dance, which she loves! She is looking forward to playing field hockey this spring for the 1st time, so that should be interesting! She is living every moment of her life to the fullest and blessing those around her with her silly theatrics, dramatic facial expressions, lively story-telling and non-stop singing that drives her brothers crazy! She remembers very little of her days of seclusion and only odds and ends of her 2nd year of life where cancer is involved...and thankfully not the dark times. The worst thing she remembers is not talking to us for weeks because her mouth was in too much pain from the sores to move it. We continue to have little scares now and again that this monster could be coming back to haunt us, but thankfully, she has made it this far without any major issues. As parents, we live with heightened awareness and it is tough not to be full of anxiety every time you see a tiny bruise, she complains that she has pains in her legs (signs of relapse), she tires quickly or gets short of breath too quickly while riding her bike (signs of heart failure), but we try to take each day in stride and hold strong to our faith in Him...we know He is there leading the way always. She has yearly Echocardiograms and her heart seems to be functioning well. We are always thankful to the doctors at JHH for the special attention and precautions they take with our baby. Heart failure is a late side effect of one of her chemo drugs and the onset could come at any time in her life. It is just one of the many post-treatment worries that will haunt our baby for a lifetime, just like so many thousands of other children. Last year we were worried as they tested her thyroid to see if it was damaged during treatment, but we were fortunate to learn that it is still functioning okay at this point. Scarlett is a beautiful, energetic, comedic, dramatic, silly, sassy and incredibly smart and articulate little girl (she keeps us on our toes!)...she is our sweet angel and we are beyond estatic that she is back home with us to heal and be able to just be a kid again. As always, we ask that the prayers continue for our baby until we can shut the door on this journey once and for all. God Bless...
