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
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. ...
I miss writing here. There’s a lot I wrote in this space and a lot I think I didn’t. Some of the “didn’t’s” were because I was afraid of putting something there, out loud, even if just in writing that might make it true. One of those things I have recently thought about as I was getting Taylor’s old hand me downs out of our attic for our Charlotte to wear this summer. I remember a time where I put Taylor’s clothes aside and I would cry. Privately, up in our attic space we have. I cried to God that if I only could have one prayer answered, could it be that Charlotte would wear these one day? Because then that would mean she is 8. It meant she got to grow up. Hand me downs were so hard for me. It made me face a fear that she wouldn’t get to wear them. That we could lose her. That I would be faced with a day of seeing them again only to donate them to another child who gets to live. And now fast forward to today. There are parents facing that reality. And we didn’t. Her story still being ...
After a long weekend with no news regarding Charlotte’s scans, a small mercy came in the form of a quick message through Charlotte’s MyChart with Duke saying the preliminary results look good and scan report is just delayed. All of her labs and check ups look good! We are confident we can celebrate another ALL CLEAR with no evidence of Neuroblastoma. She gets another 6 months to JUST BE! Thank you God! Standard of care is to monitor via the MIBG scan for 5 years after treatment. This was Charlotte’s 3 year off treatment for relapse. We expect to scan 2x at 6 month intervals this year and then one more in her final 5th year. Then her annual check ups are for long term care alone and they stop looking for Neuroblastoma unless we see any signs. This can be her story. And the waiting was a reminder that everything is God’s timing isn’t it. Like children, we want what we want when we want it. Waiting, patience is hard. We are God’s children and I smiled thinking how our immediate...
PG
ReplyDeleteYeah Charlotte
Home
Happy Fourth
Freedom
Pops
Awesome news, Happy 4th to a very deserving family!
ReplyDeleteso wonderful!!!
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