Update for May
Scarlett is feeling really well. She has been an out patient since April 2nd and we have loved and appreciated being home together as a family. To keep you updated, her love of Harry Potter continues and I couldn’t be more thrilled. I had just finished reading book number 4 aloud to her when Scarlett handed over book number 5 – all 840 pages! She is learning how to sew and has enlisted several of my friends to help her sew clothes for each and every one of her Barbies. The highlight of her week is definitely “Willa Fridays” which is when Scarlett’s tutor brings her baby to visit Scarlett. Scarlett practices reading aloud to Willa and is currently teaching her math facts. As you can imagine, Willa is quite advanced for a 7 month old and with Scarlett’s help is certain to ace her ERB’s when the time comes. We see a lot more smiles from Scarlett and hear a lot more laughter. She was even able to join her first grade class at an outdoor field trip! Her classmates continue to keep Scarlett in their thoughts and prayers sending weekly notes, hand-made cards and posters. We are thankful that the parents and administration chose to educate the girls on cancer as opposed to shelter the girls from cancer. They have embraced our family and Scarlett and we feel every bit a part of the school community today as we did the day before Scarlett’s diagnosis.
While the road ahead of her is still very long, we continue to take things day by day. I am sometimes overwhelmed with the thought that Scarlett still has 2 years of treatment in front of her and I worry how I will get us through that and then I remind myself that I don’t have to think about that right now. I just have to get us through today. I feel like the ball is rolling in the right direction and it just needs to keep on rolling!! Six months ago I was told that things would get better. They are better. They are so much better. I am pretty sure her long eyelashes are starting to grow back. Her weight has stabilized and she is eating! Scarlett no longer walks from Point A to Point B in a straight line. At times, she has a little bounce in her step and I even caught her trying to skip yesterday. She will get there. One day, she will run again.
Monday, Scarlett will start the 2nd of 5 rounds of Maintenance 1. I can count on her to walk into MSK with a smile on her face and a determination to get the day’s work done. She’ll start her day with physical therapy, move on to blood work, receive a spinal tap and finish up with chemotherapy. She does not enjoy it but she has learned to tolerate it. She rarely complains and seldom puts up a fuss. She knows first hand that life is not fair but she continues to make lemonade out of lemons. Scarlett continues to teach us the true meaning of the word resilience. She understands that the protocol is intense. For now, it’s the only way to beat cancer and we are thankful it exists. While our primary focus is to support Scarlett as she battles lymphoma, we recognize the sacrifices the children and families made before us to make Scarlett’s treatment even possible. While that ball is clearly rolling in the right direction, I would like to see it roll more quickly. We intend to do our part to help the children that follow behind us with the hope that their treatment is less lengthy, less intense and less toxic. Scarlett asked me why I never told her about cancer. Good question. The answer is because the idea of my child being diagnosed with a life threatening disease at age 6 never ever crossed my mind. Cancer now crosses my mind every minute. Scarlett inspires me to join the battle. Scarlett has made us all stop and think.
Robert, Austin, Scarlett and I are lucky to have many friends, as well as MSK, helping us to make a difference. We have several events lined up all to benefit pediatric cancer research. As it’s almost summer, it all seems to be happening at once! We look forward to seeing you all at 1,2,3 or all 4 gatherings!
**May 10th, Kids Walk for Kids With Cancer – Central Park 1PM -There is still time to sign up!
**May 17th, Kirna Zabete invites you to a Mother/Daughter Tea as The Vintage Contessa launches her first children’s book featuring Scarlett as Mademoiselle 11am-2pm & May 18th at Citibabes (scroll forward on link below for Citibabes invitation) Please remember to RSVP!
**June 5th – Sail to Sable launches “The Scarlett” Mother/Daughter Tunic designed by the Founder of Sail to Sable and Scarlett 4:30pm at the Jack Rogers Store – More details to follow!