Jessica Whelan
I should know better then to write at this time of night. It usually comes from a place of emotion, often fatigue driven. But writing for me is therapeutic. And I like to believe the documentation along this journey as Charlotte battles Neuroblastoma, will be a gift for her to read one day. And I have a strong belief I am meant to give this battle a voice not only for her, but because a greater power is calling me to do something. I don't know just what yet, but writing this is a start.
I started a post a few weeks ago that I couldn't finish. It was left unpublished. Never finished. I can't even bring myself back to read what I had wrote then. I wrote about Jessica Whelan. Her parents had just written that the doctors told them she had just weeks lef to live because her cancer had begun to spread so rapidly so suddenly. She was diagnosed with stage 4 Neuroblastoma at 3 years old last year. I don't know her or her family, but I feel like I do. What a strange and unique club. And within the club, there are tiers. We are not with Jessica's parents. We are in a different side. Our Charlotte is getting better. Treatment is working. She's doing it. Treatment didn't work for Jessica, nor the 2 clinical trials she painfully went through. She died today. I don't know Jessica. I don't know her famiky. I sit here next to Charlotte who is beating back this demon and inspiring us all in her wake. But Jessica is gone. And somehow, I feel a strong desire to honor her in someway. And I don't know how.
My hope is to honor Jessica while we battle this demon and hopefully help
pave a trail for research that can bring an end to the suffering Jessica and her family has endured. I don't know how, or when or where or what just yet...but we will make an impact. This journey has forever changed our view of just about everything and my passion is building with every step.
I came across another article during my insomnia and I will post that link here as well. I never know if these petitions really make a difference...but I lie awake next to Charlotte here in this place where sleep does not come easily for us parents. I ask, if you have time and can find it in your heart to click this link (at bottom of this post) and sign it ❤️? Our 3 year old daughter is battling stage 4 neuroblastoma. She is doing well on this protocol thanks to research and to God...but pediatric cancer research is severely under funded. I didn't realize that until we entered this world. WHEN Charlotte survives, there are many potential long term side effects that could impact her future survival or quality of life. More research is needed to help provide pediatric cancer treatment to little ones so that they can not only be cured, but truly grow up and LIVE. She has gotten adult chemotherapy for 8 months and we are only half way through her protocol. We are grateful and blessed in every sense....but what this will do to her little body because there are no other options at this time, well that will be painful to see. If these kids survive, their quality of life is often difficult due to side effects and secondary cancers. After their battle, they deserve some peace in their victory.
Although our faith holds strong and we feel we are walking with God on this journey as he works through us in some way, I can't help but wonder if I have portrayed us as TOO optimistic. We are a positive people family and Charlottes remarkable progress has provided us with a positive framework to work within. But I want this documentation of her battle to also be authentic and realistic. It isn't all smiles with popsicles, cuddles with daddy, and holding balloons with a cute bald head. We have believed from the start, that Charlotte has been shielded by God in so many ways. Shielded from some of the more dangerous aspects of this treatment. But she has had pain and fear and moments that no parent should ever experience. And I believe there is more then one way to raise awareness so that funding can be appropriated in a realistic manner. One way is by generating out rage and fear. That is effective. I could take photos to document her pain, and I have from time to time taken a picture so that I could document her journey authentically. But the other way is how Brian and I feel called to do. We want to show Charlootes example in what we say, share, and write. Her example doesn't create out rage and fear. She exemplifies the love and mercy and grace of God. I don't believe one way is right and the other wrong. Both ways are true and important in order to reach varying audiences. And they both have a common denominator: our children deserve therapies that can help them beat their cancer and ALSO grow up to live their life to its fullest potential. And for that to happen, it starts with us. We can be the change. And I will spend my life learning how so that research can bring these little ones back to their lives.
http://campaign.r20.constantcontact.com/render?m=1115895323836&ca=f88ffb8c-10cf-40ce-a2a2-92df309d51c5
I started a post a few weeks ago that I couldn't finish. It was left unpublished. Never finished. I can't even bring myself back to read what I had wrote then. I wrote about Jessica Whelan. Her parents had just written that the doctors told them she had just weeks lef to live because her cancer had begun to spread so rapidly so suddenly. She was diagnosed with stage 4 Neuroblastoma at 3 years old last year. I don't know her or her family, but I feel like I do. What a strange and unique club. And within the club, there are tiers. We are not with Jessica's parents. We are in a different side. Our Charlotte is getting better. Treatment is working. She's doing it. Treatment didn't work for Jessica, nor the 2 clinical trials she painfully went through. She died today. I don't know Jessica. I don't know her famiky. I sit here next to Charlotte who is beating back this demon and inspiring us all in her wake. But Jessica is gone. And somehow, I feel a strong desire to honor her in someway. And I don't know how.
My hope is to honor Jessica while we battle this demon and hopefully help
pave a trail for research that can bring an end to the suffering Jessica and her family has endured. I don't know how, or when or where or what just yet...but we will make an impact. This journey has forever changed our view of just about everything and my passion is building with every step.
I came across another article during my insomnia and I will post that link here as well. I never know if these petitions really make a difference...but I lie awake next to Charlotte here in this place where sleep does not come easily for us parents. I ask, if you have time and can find it in your heart to click this link (at bottom of this post) and sign it ❤️? Our 3 year old daughter is battling stage 4 neuroblastoma. She is doing well on this protocol thanks to research and to God...but pediatric cancer research is severely under funded. I didn't realize that until we entered this world. WHEN Charlotte survives, there are many potential long term side effects that could impact her future survival or quality of life. More research is needed to help provide pediatric cancer treatment to little ones so that they can not only be cured, but truly grow up and LIVE. She has gotten adult chemotherapy for 8 months and we are only half way through her protocol. We are grateful and blessed in every sense....but what this will do to her little body because there are no other options at this time, well that will be painful to see. If these kids survive, their quality of life is often difficult due to side effects and secondary cancers. After their battle, they deserve some peace in their victory.
Although our faith holds strong and we feel we are walking with God on this journey as he works through us in some way, I can't help but wonder if I have portrayed us as TOO optimistic. We are a positive people family and Charlottes remarkable progress has provided us with a positive framework to work within. But I want this documentation of her battle to also be authentic and realistic. It isn't all smiles with popsicles, cuddles with daddy, and holding balloons with a cute bald head. We have believed from the start, that Charlotte has been shielded by God in so many ways. Shielded from some of the more dangerous aspects of this treatment. But she has had pain and fear and moments that no parent should ever experience. And I believe there is more then one way to raise awareness so that funding can be appropriated in a realistic manner. One way is by generating out rage and fear. That is effective. I could take photos to document her pain, and I have from time to time taken a picture so that I could document her journey authentically. But the other way is how Brian and I feel called to do. We want to show Charlootes example in what we say, share, and write. Her example doesn't create out rage and fear. She exemplifies the love and mercy and grace of God. I don't believe one way is right and the other wrong. Both ways are true and important in order to reach varying audiences. And they both have a common denominator: our children deserve therapies that can help them beat their cancer and ALSO grow up to live their life to its fullest potential. And for that to happen, it starts with us. We can be the change. And I will spend my life learning how so that research can bring these little ones back to their lives.
http://campaign.r20.constantcontact.com/render?m=1115895323836&ca=f88ffb8c-10cf-40ce-a2a2-92df309d51c5
Jessica Whelan
Jessica's dad is a photographer. This photo of Jesica in pain has drawn hundreds of thousands of people's attention towards Neuroblastoma and the need for funding research. https://www.facebook.com/Afightagainstneuroblastoma/
Charlotte today. One of many snap shots we could have taken but of course didn't. And her sweet voice saying "momma I feel yucky"
Here are a few more moments the depict Charlotte in the trenches. There is JOY but also so much pain. I could not would ever capture it all but this is all part of her story. My hope is that one day, it won't have to be for her or many other children.
Prayers for Jessica Ptayers for Jessica's parents I cannot imagine
ReplyDeletePrayers for Charlotte. Prayers for you and Brian
Prayers for research that leads the way to easier treatments and a cure
Thank you Jennifer for your faith and your strength For your courage and your love
Prayers for your whole family as you and Brian keep the family safe and loving
ILY
Pops
Every day that I wake up to my healthy babies, I thank God for that day as I know the next day is not promised to be so lucky. You are doing amazing and wonderful things sharing Charlotte's story. Thank you for your honesty and for also sharing Jessica's story.
ReplyDelete