A Family Update as they begin the New Year!

Scarlett is doing well this week. She doesn’t feel terrific but it’s nothing that we have not been able to handle at home as an outpatient. Although we do spend long days at the hospital, it’s always worth it when we come home at night and sleep in our own beds. Thank you so much to everyone who has generously been sending us meals.  As I was never been much of a cook to start, it’s such a relief to come home and know that I don’t have to think about dinner.

Scarlett finished her last dose of high dose steroids yesterday. (She repeats that treatment every 2 months.).  The steroids increase her appetite and in her case.  it was full speed ahead. She ate more in the past week than I have seen her eat in the past 2 months. She gained 5 pounds in 5 days! She is very bloated and uncomfortable but I am happy that she is no longer 45 pounds. It was no secret that I was very concerned about her 10 pound weight loss.

This was a busy week for Scarlett.  She finished her last and only round of radiation. She handled it like a champ. Radiation takes place off the pediatric floor so it’s not nearly as inviting a place for a child. With that said, the radiology team of technicians and her doctor  were phenomenal. They were welcoming, caring and dare I say, fun!  Oddly, Scarlett enjoyed these visits which made the whole process easier for everyone.   To mark the last treatment,  they gave Scarlett her face mask to bring home.  Robert and I have tired to put it out of sight.  Scarlett ,on the other hand, has enjoyed putting on the mask unexpectedly and walking around the apartment trying to scare people.   Successfully, I might add.  When I see that mask, it’s just another reminder of how brave and courageous Scarlett and the other children are at MSK.  We learned this week that one of Scarlett’s friends, who is 4 years old, is returning to school.  It’s so exciting and heart warming to see a child almost finished with treatment and returning to the childhood that they deserve.  We will be so sad not to see her on our visits to the hospital, but we are so proud and happy for her and her family!

Many of you have asked about Austin. Austin is ok!   After the initial shock and confusion, he seems to be handling everything very well.  He went skiing over the MLK weekend with friends and the trip did wonders for him.  I think it was refreshing for him to get away from all of this and breathe in some fresh, mountain air.   He is happy and smiling and so helpful. It’s amazing to see him embrace his role as the caring big brother. Last night,  he helped me clean up dinner and prepare her meds. He  read her a story and tucked her into bed and was overall unselfish and caring.  I can’t say that every day but I can certainly say that has been the case lately.   Thank you to our wonderful friends who made the trip to Colorado happen.  You guys are all amazing!  Also, thank you to all of our friends including the wonderful Moms at Buckley who always have their eye out  for him. We so appreciate the notes of encouragement, the weekly Friday lunches, and  the offers for play dates and sleepovers. Oh, and a special thank you to the Mom who saw Austin sitting at Buckley and called to ask if she could bring him home. Yes, I simply forgot to pick him up.  It’s comforting to know that you are all there to help me pick up the pieces.  Taking care of Scarlett is a full time job and while we are trying to keep Austin’s life as “normal” as possible, Robert and I both know that it’s simply not possible.  We appreciate our family and our friends for helping reassure Austin that he is safe and loved!

I will leave you with one last thought. I have been reading Scarlett the first Harry Potter book, The Sorcerer’s Stone.  As we were reading the final chapter, last night, I realized that Dumbledore really is the greatest wizard. He told Harry that his mother loved him so deeply that he would always be protected.  I think I read that paragraph to Scarlett at least three times. And in the final pages of the book, when Dumbledore awards the House Cup to Gryffindor, this is what we read, “the green hangings became scarlet and the silver became gold; the huge Slytherin serpent vanished and a towering Gryffindor lion took it’s place. (ROAR!)

We are off to the hospital for another day of treatment. Each day gets us closer to the day our serpent vanishes forever (cancer) and that Scarlett will be the one returning to school and to the normal childhood SHE deserves. We will get there…  ROAR!