Round 1 Immunotherapy CHECK
Quick update: Charlotte is home! Her last infusion finished up last night and the team gave us the green light to bring her home this afternoon. She's still not feeling great but we saw her spark return a little tonight as she mustered some energy to play with her best amigos, Taylor and Parker. All is right in the world for a little while. We are exhausted from this week in the hospital, but when we watched our 3 running together, playing in the yard at sunset with the littlest doing her best to keep up, it rejuvenated our weary hearts. She continues to inspire and amaze us all.
Finally, there is a little boy, Cannon, whom I have followed since Charlotte was first diagnosed and whose mommy has been a fierce inspiration to me at times, who needs huge prayers right now. (I have written about the organization Cannonball Kids Cancer (CKc) before). Cannon has been in remission from stage 4 Neuroblastoma for almost 3 years. There has been a spot detected on his routine maintenance scan this week. They are awaiting further results to determine if this "spot" is new cancer. I personally wrote to his mother, Melissa, after reading their story while on the floor next to Charlotte's bed just weeks after she was diagnosed. She wrote me back and raised me up. She has begun a the CKc foundation to raise money for pediatric cancer research. She never tires and never quits for these kids. I wanted to ask all of you in our village to raise this family up as they hold their breath awaiting results. We are sending a constant stream of hope and positivity to Cannon. Thank you so much for including them in your thought and prayers.
We will have a couple weeks home with hopefully just clinic check ups. Charlotte will begin a new oral medication (a Retinoic Acid) next week as part of her immunotherapy. There will be side effects to manage but overall, she should be able to enjoy some "just being a kid" time. Thanks for all your love ❤️ Thank you God for this opportunity. Immunotherapy is the real game changer in Neuroblastoma. We have recently learned there is a world wide shortage of Unituxin, which is the backbone of this Immunotherapy protocol. The biotech company that creates it, located just miles down the road from us, is creating a second manufacturing facility to keep up with the demand but it's years away from being completed. The company will not send this medication outside of the U.S. at this time. This means that Charlotte is one of the lucky children who will have access to Unituxin (Dinutuximab)....which means there will be hundreds maybe thousands of children across the world who will be stuck in limbo until an alternative product is available. Their cancer potentially advancing as they wait. I can't wrap my mind around this just yet not even know how to pray when my heart breaks for these kids and families. But tonight, I will give myself a break. I need a break. I need rest. I need to sit by my husband and hold his hand. I need to watch and hear my babies playing and laughing. I need to feel deep breaths. I need to feel the sun. I need to restock my stores of energy and patience and strength because round 2 of Immunotherapy is coming. It brings with it a the unknown in a second medication (IL-2) in addition to the Unituxin. We will not back down. We will throw everything we can at this beast.
Finally, there is a little boy, Cannon, whom I have followed since Charlotte was first diagnosed and whose mommy has been a fierce inspiration to me at times, who needs huge prayers right now. (I have written about the organization Cannonball Kids Cancer (CKc) before). Cannon has been in remission from stage 4 Neuroblastoma for almost 3 years. There has been a spot detected on his routine maintenance scan this week. They are awaiting further results to determine if this "spot" is new cancer. I personally wrote to his mother, Melissa, after reading their story while on the floor next to Charlotte's bed just weeks after she was diagnosed. She wrote me back and raised me up. She has begun a the CKc foundation to raise money for pediatric cancer research. She never tires and never quits for these kids. I wanted to ask all of you in our village to raise this family up as they hold their breath awaiting results. We are sending a constant stream of hope and positivity to Cannon. Thank you so much for including them in your thought and prayers.
We will have a couple weeks home with hopefully just clinic check ups. Charlotte will begin a new oral medication (a Retinoic Acid) next week as part of her immunotherapy. There will be side effects to manage but overall, she should be able to enjoy some "just being a kid" time. Thanks for all your love ❤️ Thank you God for this opportunity. Immunotherapy is the real game changer in Neuroblastoma. We have recently learned there is a world wide shortage of Unituxin, which is the backbone of this Immunotherapy protocol. The biotech company that creates it, located just miles down the road from us, is creating a second manufacturing facility to keep up with the demand but it's years away from being completed. The company will not send this medication outside of the U.S. at this time. This means that Charlotte is one of the lucky children who will have access to Unituxin (Dinutuximab)....which means there will be hundreds maybe thousands of children across the world who will be stuck in limbo until an alternative product is available. Their cancer potentially advancing as they wait. I can't wrap my mind around this just yet not even know how to pray when my heart breaks for these kids and families. But tonight, I will give myself a break. I need a break. I need rest. I need to sit by my husband and hold his hand. I need to watch and hear my babies playing and laughing. I need to feel deep breaths. I need to feel the sun. I need to restock my stores of energy and patience and strength because round 2 of Immunotherapy is coming. It brings with it a the unknown in a second medication (IL-2) in addition to the Unituxin. We will not back down. We will throw everything we can at this beast.
A rainbow from our village here today ❤️🌈
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