Charlotte’s Dream

By -
Charlotte and Brian are taking on this final round of immunotherapy up in NYC as I suddenly came down with the flu this weekend😩. I have never missed a day of anything over these past 4 years while on this journey so I’m having a hard time wrapping my head around not being there, but I know Brian’s got this. And I have to stay home and recover. Now we need to hope and pray they stay well! And that this round can be as gentle as possible on our sweet fighter. We do not know if she is likely to have a worsening allergic response or not. But this is the finish line. Our hopes and beliefs are that this is truly her final round of active cancer treatment ever. And that she WILL remain disease free for the rest of her life. You see Charlotte has a dream. A dream that about broke our hearts because we want her dreams to be so much bigger. But we are hyper focused on making her sweet dream a reality so that she can dream bigger and more amazing then we could ever imagine. Charlotte’s teacher shared this with me and said Charlotte volunteered to read it to her class, bless her little heart. As they talked about MLK recently, she bravely wrote this by herself (some teacher corrections there to help her). Lord, please keep our Charlotte close this week so that we can help make her dream come true. And please give Brian the strength and wisdom he needs to care for her this week. Please let them steer clear of this flu and let this week be as gentle as possible on them both. Thanks for all your love and prayers village. I’ve already been surrounded by so much TLC from friends and neighbors and our village. Thank for for the meals and broths and extra meds and fluids and checking in❤️🌈We are so grateful. Now let’s get this final round DONE!

“My dream is to not be sick. I don’t like being sick. I do
Not like being poked. I all so would not like to have 3F8.”

Off with daddy

Got to RMH in time for super bowl dinner fun


Comments

  1. Debbie Reynolds CoxFebruary 3, 2020 at 12:32 PM

    God bless our dear little Charlotte! I love her note that she wrote! We're always praying!! Precious pictures!

    ReplyDelete

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