Coming full circle--anniversary of diagnosis, scan week AND Be The Rainbow Foundation

By -

 It's scan week AND the anniversary week of her diagnosis, village. Here is a special video from Charlotte.

It was this exact week 6 years ago, after being admitted to the pediatric oncology unit at Duke, that Brian and I received our first gift of many from a special charity. However, they had formed their charity to help families like ours in memory of their daughter who had lost her battle with cancer. I remember looking directly at Brian, anguished and scared beyond belief, but I said these exact words "We will do something like this one day but we will do this WITH Charlotte because she is going to survive this. And will will give back and help others somehow and some way not to honor her memory, but along side of her and show the hope that we need to see right now ." I said that because I needed to believe that. It was the only fuel I could find to get us through those days and the hundreds that followed.
And here she is. Right next to me making a thank you video for the founding donors who have joined our cause and are helping us Be The Rainbow to other families facing this. We want to use our story, our experiences, and the hope that comes along with them. It's a feeling I can only describe as one of coming full circle, looking back from where we started to where we are at this moment in time. THANK YOU GOD! THANK YOU VILLAGE! THANK YOU FOR PRAYERS FOR CLEAR SCANS.

Thank you for helping us! www.betherainbow.org



Comments

Post a Comment

Popular posts from this blog

ROUND 2 under way

By -
Image
It was exactly 4 Monday's ago. We left our pediatrician and ended up here at Duke Children's just about this time of day where we were about to receive Charlotte's cancer diagnosis. It was any parents worst nightmare as we came to learn and understand this diagnosis. It feels like 4 months ago. We are still coping and feeling our way, but never in a million years could I imagine being in this "place" that we are today, emotionally and spiritually. We are still coping and going through the grieving stages, but hearing the news today that Charlotte is healthy enough to begin round 2 was great news. A couple weeks ago, hearing that your child needed chemo was gut wrenching but today it is music to our ears. It means Charlotte has recovered from round 1 and is ready to continue to fight and heal while we all cheer her on. Her spunky spirit is back. She had a wonderful, restful weekend home playing with Taylor and Parker and also getting to see some family and a few f
Read more

Reliving June 13

By -
Image
Today in 2019, was probably the hardest day of my life. You might have thought that would have been the day she was diagnosed or maybe that scary time we had during Charlotte’s transplant, but it was today. We snapped this picture below waiting for Charlotte’s doctors to come into her examination room during her standard check up at Duke. Mere minutes later, we saw more than the normal 4 feet in front of the door (the oncologist and NP that would see her). When the door opened and child life was there—Brian and I instantly knew. Child life had come to distract Charlotte so we could talk to her doctors. The world went into slow motion and I don’t know how I didn’t hit the floor if I’m honest. Brian’s face instantly drained of color. We knew immediately her scans had shown her disease, her cancer, had returned.  After all she had been through, all we had seen, all we had survived as a family…this day drained the hope out of me and I can still have a visceral response remembering it. Of c
Read more

Getting some sleep and planning on a wagon ride!

By -
Image
Good morning! They think we might get to a room later today! Steps closer to coming home! Her X-ray showed improvement with lung fluids. Still fighting a fever and needs oxygen. Finally got put back in solids and ate some bites of spaghetti last night. We both slept better last night too. We didn't get out yesterday so maybe today. We have a wagon and are hoping to take her for a ride maybe even to see the helicopter on the roof:) Got a little kick in the gut with some news specifically regarding her tumor genetics. I was really down and having a hard time last night. But woke to a new day. And Brian has a contact in Cincinnati who put him into contact with a leading researcher for high risk NB and after talking with him we feel better about not just our current plan here at Duke but also about all the new research that hasn't even been published yet which has MUCH better prognosis outcomes for someone like Charlotte. I really needed to hear that and the timing of this doctor
Read more