Charlotte was diagnosed with Stage 4 High Risk Neuroblastoma on 3/18/16.What started as a nightmare has become an inspiring journey. We are being blessed by witnessing God's grace and love. He is walking with our baby girl and she is showing us all what's possible. This will be a tough road but children can survive this. We have an amazing medical team, and supportive family and friends. We will keep chasing the rainbows from above as we heal our little girl.
We can't believe it worked out but somehow we woke up and Charlotte's counts almost tripled to over 700! We are home! The children ran off together as if they hadn't skipped a beat and Doug and Joanne (pops and Mimi), who have been here for several days while we were hospitalized, got to spend a couple hours at our home with all us all before their flight home.
Although we plan to have a laid back, low key 4th of July, it will be full of some of our favorite things: family, food, ice cream, playing, sparklers, and some form of fireworks (neighborhood, TV, and maybe daddy drive way fireworks). We are so grateful to have her home and to be together as a family to celebrate our wonderful nation and all of those who have served for our freedoms. If all goes as planned, we will all be home together until the surgery scheduled for July 14. And we will take in and soak up every second. Sending love to each of you with warm wishes for fun with family and friends on this 4th of July🇺🇸🗽🎆🌈
Home! (Time with Pops and Mimi
Home! Some time with Pops and Mimi
Happy 4th of July!
Goofs
Playing at the train table yesterday...wanting to go home but having fun wherever we are
Playing nurse with the nurses stuff
Making faces at daddy
Our good friends The Stalnaker's also saw a rainbow ( while in Florida) when reading our message about Charlotte's scans!
Kids getting to visit and play while hospitalized
Playing play dough. For a little while, she gets to forget she is in a hospital room
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...
Charlotte has had the best day so far since she has been hospitalized. She has begun to talk and smile with the nurses here and really come back out of her protective shell she has created. She actually wanted to play today. Fevers are really spreading out (about 36hrs). That and getting some nutrition via feeding tube is helping her feel better. The fluid is only a minor concern at the moment but we still need other issues to resolve such as a sustainable white blood cell increase for several days and they are also watching her heart rate closely as she is still tachycardic (rapid heart rate) which could be due to several factors at this point. Team is working to isolate the main cause now but it could simply be the tumor itself which impacts adrenal glands. Wanted to share a few happy pictures from today: after sponge bath, Popsicle, art and reading with child life here. These will be the last days for pictures with her "current" beautiful hair. I...
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 ...
PG
ReplyDeleteYeah Charlotte
Home
Happy Fourth
Freedom
Pops
Awesome news, Happy 4th to a very deserving family!
ReplyDeleteso wonderful!!!
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