HERE COMES TEAM SCARLETT...A FORCE TO BE RECKONED WITH...AGAIN!!! Last year, our team of over 30 shavees and countless volunteers/supporters, otherwise known as HEROS, made ourselves known with our 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. We raised almost $51,000...PHENOMENAL!! 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 beat last years donations total! I took it easy on the Goal Amount...but I intend to increase it and quickly! I know we can do it and then some! The most important thing in all of this for Sean, Gavin 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. This volunteer-driven charity funds more in childhood cancer research grants than any organization except the U.S. government. Your gift will give hope to infants, children, teens and young adults fighting childhood cancers. So when we ask for your support, we're really asking you to support these kids.
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 a 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. 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 days 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 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. 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 1 year later on our little miracle...
Scarlett made it home last year just in time for Christmas with her 4-year-old brother, Gavin, and it was with deep gratitude to God Our Father that we just spent a 2nd healthy Christmas together rejoicing that we were all blessed to be together once again to celebrate Our Savior's birthday and the magic of the season. Last year, she was under a lot of seclusion in the months following her release from the hospital, but it was amazing for her to be able to get out and enjoy all of the magical delights that the season brings to a 3-year-old. She has had an incredible 2012 and as she was allowed, we tried to make up for lost time and do all of the exciting things that a small child dreams of. She gained alot of freedom when summertime came and she was able to be reintroduced to her favorite past time of all...playing on the beach and in the ocean! She was able to go back to her pre-school in late July and rekindle all her little friendships...it was hard for Mommy to part ways with her during the day, but she was in heaven to be free to be around groups of children again and that made it all worthwhile. She is able to take gymnastics classes and she loved playing in a soccer clinic at her school! We have had several little scares throughout the year that this monster could be coming back to haunt us, but thankfully, she has made it through the year 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 or she complains that she has pains in her legs (signs of relapse), 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 did have another Echocardiogram late last year and her heart seems to be strong and hanging in there. 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. Our latest endeavor is to go through some testing to see if her thyroid/various glands were damaged during her treatment. She seems to be having trouble with her metabolism, which can be common for post-cancer treatment patients, so we are looking at various possibilities that could be causing this. We are hopeful it turns out to be nothing and that she will not suffer lifelong with thyroid issues from such a young age. Scarlett is a beautiful, energetic, comedic, dramatic, silly, sassy and incredibly smart and articulate little girl...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...