The "What ifs"
Charlotte had her preadmission clinic check up this morning at Duke Children's. We know that drive like the back of our hand. We know the walk in blind folded. Charlotte struts in like she owns the place. And honestly, with her confident little lovable personality, she kinda does. She has those nurses and staff wrapped around her little finger😊 I'm sure all these kids do. I saw another little one checking in who had just started losing her hair. She looked to be close to 3 years old. I saw her parents care worn faces. I saw her little tired eyes behind her mask. I saw her tubies dangling behind her little tank top with her arms wrapped tight around her mom's neck. Our long 18 month journey is coming to an end but for every one of us celebrating a milestone such as this, there are more little ones being diagnosed behind us. I thought about this today as the staff smiled at Charlotte and talked about how close she is to being finished. How they go from one story to another. One room contains a potential victory but in the next second they face someone in the throws of this beast. And like always, all I could do is helplessly pray for this little girl and her parents. For all these people. I wonder if God will help me know what else I can do besides pray. What else can we do? Where will our road go from here?
So, we are gearing up for Round 5 Immunotherapy and will be admitted Sunday for her LAST inpatient stay. Her check up went well except for elevated liver enzymes that we will watch. This could be a side effect of the oral Retinoic Acid she takes at home 2 weeks on and 2 weeks off over the past 5 months. The other side effect we are seeing is some extreme photophobia or sun sensitivity. After mere minutes, even with sunglasses on, her eyes hurt and itch and she appears to have a reaction similar to a histamine release we have see from certain factors before. We've really had to limit her time outside this summer due to the medication. She also got the small catheter implant in her arm today so we can begin her injections that go along with this round. We are ready. She is ready. Holding her while they put the needle in, hearing her cry, and feeling her sob against my chest, I can't even count how many times she's had to go through this over the last 17 months, but I closed my eyes and held her tight and absorbed the enormity of the fact that SHE IS ALMOST DONE WITH TREATMENT. She understands that we are nearing the end of her "medicine in her tubies." She knows she will spend the night all next week to get her medicine again but that when she's finished we will have another confetti parade party and go home! She even asked Dr. Driscoll about getting her tubies out, which is also right around the corner. For her, this is her prize. She wants so badly to swim, take a normal bath, take a gymnastics class and a dance class and go to preschool...she wants all of these things so badly. Brian and I have decided to advocate on her behalf for her central line to be removed as soon as she is stable after this next round. It is not necessary for her to have her lines to receive the Vaccine Trial, nor for scans to take place. We aren't going to plan for the "what ifs" that these doctors see and know all too well. What if her next scan isn't clear? What if in the next couple months she needs more treatment for some reason? If the "what ifs" come to fruition, then having her line replaced will be the least of our worries. And if for some reason that is her path, well our little warrior will live up during the time she gets, being a carefree 3 year old (excuse me, as she would say "almost 4!!! Eighteen October") doing whatever her heart desires. We will live our hope and belief that her scans will continue to show no evidence of Neuroblastoma. For once, we have the ability to let Charlotte have a little say in this matter. And she says, "I want to play". And so she shall. And we will be so grateful watching her. Thank you God❤️🌈
So, we are gearing up for Round 5 Immunotherapy and will be admitted Sunday for her LAST inpatient stay. Her check up went well except for elevated liver enzymes that we will watch. This could be a side effect of the oral Retinoic Acid she takes at home 2 weeks on and 2 weeks off over the past 5 months. The other side effect we are seeing is some extreme photophobia or sun sensitivity. After mere minutes, even with sunglasses on, her eyes hurt and itch and she appears to have a reaction similar to a histamine release we have see from certain factors before. We've really had to limit her time outside this summer due to the medication. She also got the small catheter implant in her arm today so we can begin her injections that go along with this round. We are ready. She is ready. Holding her while they put the needle in, hearing her cry, and feeling her sob against my chest, I can't even count how many times she's had to go through this over the last 17 months, but I closed my eyes and held her tight and absorbed the enormity of the fact that SHE IS ALMOST DONE WITH TREATMENT. She understands that we are nearing the end of her "medicine in her tubies." She knows she will spend the night all next week to get her medicine again but that when she's finished we will have another confetti parade party and go home! She even asked Dr. Driscoll about getting her tubies out, which is also right around the corner. For her, this is her prize. She wants so badly to swim, take a normal bath, take a gymnastics class and a dance class and go to preschool...she wants all of these things so badly. Brian and I have decided to advocate on her behalf for her central line to be removed as soon as she is stable after this next round. It is not necessary for her to have her lines to receive the Vaccine Trial, nor for scans to take place. We aren't going to plan for the "what ifs" that these doctors see and know all too well. What if her next scan isn't clear? What if in the next couple months she needs more treatment for some reason? If the "what ifs" come to fruition, then having her line replaced will be the least of our worries. And if for some reason that is her path, well our little warrior will live up during the time she gets, being a carefree 3 year old (excuse me, as she would say "almost 4!!! Eighteen October") doing whatever her heart desires. We will live our hope and belief that her scans will continue to show no evidence of Neuroblastoma. For once, we have the ability to let Charlotte have a little say in this matter. And she says, "I want to play". And so she shall. And we will be so grateful watching her. Thank you God❤️🌈
Charlotte brilliantly grabbed her umbrella and said "look mom! Shade!" That's when she learned what a parasol is😁
VIP treatment at a swim meet. Trying to keep her out of the sun while managing 2 other kids on the swim team is tricky but we have an amazing village
A morning at Aloha Zoo with friends! She got to see rescued animals here
Reading out loud after checking out some library books
Jelly shoe sisters.
Fun at a park with old neighbors Jack and Danielle
First day is 3rd and 1st grade! Charlotte is really going to miss having her big sister and brother home with her everyday
A mood swing...she refused to pose in a group shot at bus stop on first day of school 😂 The Accutane makes her really moody, not to mention she's three so that goes hand in hand!
Twister! She found this hilarious
Toddler bounce time at Bounce U. She had a blast! Trying to find fun indoor things for her to be able to do!
She picked out fairy wings from the treasure box today after her clinic check up.
Some more rainbows of hope and love from you all over past couple days ❤️
"Best Day Ever" She says this a lot but I think she always means it too.
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