Injection 4 done. Time to unplug ya’ll

Charlotte and I went up to MSK in NYC Wednesday 11/15 for her to receive the 4th of 7 Vaccine injections. As we got ready to board, she spotted 2

rainbows next to each other on the floor of the airport. After we boarded, the sunlight reflecting off the sequins on her butterfly sweater she got from Pops and Mimi for her birthday, scattered the light all around us in such a way that it created a disco ball effect, bouncing off the seats and walls and ceilings😂. It was so much fun! We will take every smile, every laugh, every God Wink we can get!

She is doing fantastic with this Clinical Trial. She is tolerating everything required very well, even the oral medication she is required to take 2 weeks on-2 weeks off. It is a thick, viscous solution called Beta Glucan derived from Yeast and she has to take it on an empty belly with no food or water for an hour before or after. And it’s no small amount she needs to swallow at a whopping 30 ml every day for 2 weeks. This will go on for the remainder of the study which will span until September 2018. It’s aim is to incite the correct immune response to Target Neuroblastoma. Today, she continued to harness her courage which seems to be innate, surly God given, as she goes through all the pokes and IV blood draws and finally the actual shot, which causes her a lot of pain at the site of injection. Thankfully, for her it is temporary although I’ve learned that is not the case for all children on this study. She also continues to shine with her playful and goofy humor, often amusing everyone around her. You should have seen her “perform” at the Ronald MacDonald House last night! We were all in awe as she stood unabashedly in the center of their amazing music room as 4 grown men and women played instruments while she held the mic and sang and danced. The all business look on her face and genuine enjoyment at the moment was almost too much. I held back tears of both joy and pride watching her. I wonder, as all parents do about their children, what she will be? Who she will be? Where will life take these 3 amazing creatures that Brian and I get front row seats too?

After Charlotte performed her heart out, she settled down at the craft table and began to create a true Charlotte original using holiday paper and glittery decorative tape and gems and glitter glue and markers. While working, another 4 year old girl named Isla climbed into the seat next to her. She proceeded to do the same thing as Charlotte, ultra focused on creating whatever her imagination cooked up. I smiled noticing her bright pink hair that reached her shoulders. Her mom and I struck up a conversation and I learned why Isla’s hair was pink that day. Isla has been clear of Neuroblastoma for a year now and has finished the Vaccine study that Charlotte is on. During scans and biopsies, they noticed some abnormalities in her bone marrow that was not Neuroblastoma. Turns out, this little fighter, is being asked to tackle not one but two different types of cancer. She has developed a secondary cancer, a type of Leukemia, due to all the treatment she has been through. Her hair is pink because in a few days they will be admitted to Sloan’s pediatric bone marrow transplant unit for her to undergo a bone marrow transplant from a matched donor with the hopes her new marrow can start to produce healthy cells again instead of cancerous one. Isla wanted pink hair because she was sad to learn she was going to lose her hair again. My heart fell in my stomach. I’m sure the look on my face was zero comfort to this mother who had her 8 month old son on her hip and smiled a crooked, tired smile. She had hopeful eyes and her retired dad was with her and would help while her husband worked and took care of their son, who just started Kindergarten, at home. She said if all goes as planned, they will be there for 4-6 months. I can’t stop thinking of this family and this road that’s been asked of them. I felt paralyzed and then somewhat numb because I felt, selfishly at the time, that I couldn’t hear one more story about relapse or secondary cancers or children who are not currently beating this thing. Now, I just feel mostly sick about it all. And ashamed that I have been feeling a little down lately. Here we are, where hundreds of people would love to be, and I’m struggling. Struggling with the emotions and trying to figure out how to get through them. Charlotte is happy and playing and taking my hand “mommy, come play with me. Where’s your smile?” And I know she is right. I know the information I have at hand is somewhat skewed because there are many many kids doing well and I don’t see them because they aren’t at the hospital or at RMH or have parents on the NB support pages I follow asking terrifying questions because they are out LIVING. I know they are. And we just don’t know or see them. And right now, our Charlotte is too. So instead of feeling sickening worry and reading every single thing I can about Neuroblastoma, I need to be doing that right now too. LIVING. But I feel the stirring inside of me and I won’t ignore the feeling that I want and NEED to help these families. Brian and I are wanting to give back, help, make a difference in whatever way God would like us to but we need to know what that will look like. There is work to do here, even while we are still going through uncertain times ourselves. So, I have promised Brian that when I return home from this trip, I am going to unplug for a while. I’ll still update this care page about Charlotte. She has scans coming up in December that we need prayers for so I will certainly be updating about that. But as far as following families and daily reading on support pages and research articles and etc...I am unplugging. We have been given a gift and this holiday season, we will all be home together. God wants me to be present. And Taylor, Parker, and Charlotte deserve for both of their parents to be present. Brian deserves to have his wife present. God knows I won’t forget. He knows halfhearted has never been an adjective used to describe me. When I’m ready, I’ll be all in again, going full force, ready to tackle whatever challenge, whatever work he wants from me, from us. But for now, I rest. And enjoy our family and the miracles of this holiday season.

Wishing all of you the same peace and light hearted joy, surrounded by those you love most this holiday season. And as always, God bless you all as you stay with us, bear with me, pray for Charlotte, and love our family.