Monday, July 10, 2017

Solace for Sidney. Fighting Childhood Cancer

Sidney, an 11-year-old fighting childhood cancer 


There are days when we are so caught up in the world's hoopla of politics and crazy-humanity, that we don't always capture the moments when humanity takes charge and people walk away from political discourse, name calling, war-zones, and all that stuff that is truly temporary and nothing more than humans behaving badly. Today is one of those days. The news is grim and the players and their puppets take the spotlight when they should be reduced to nothing more than dust.  Today, real people with real world issues have stepped up to ask for help and support for the children and the families of children dealing with childhood cancer.

Let's dump the divisiveness and work for our greater good, which includes our children, as exampled in this recent Go Fund Me project, Solace for Sidney.

From the Go Fund Me page:

Solace means to provide comfort in a time of distress or sadness. Imagine being 11 years old and having to face cancer not once, not twice, but three times in your life? Sidney is an AMAZING 11 year old girl who beat Leukemia twice, but has tragically just learned that she has two inoperable brain tumors. Despite all of her challenges, Sidney has remained a light in the world. As the family is forced to once again make heart wrenching decisions, they want to continue to give Sidney opportunities and experiences that will bring joy to her life. Sidney is legally blind from treatments, but that does not keep her from attending music and theater events and amusement parks. We are hoping that through this fundraising, it can help provide financial relief for the family so they can plan special events that they will treasure and remember forever. 

Sidney was diagnosed with Acute Lymphoblastic Leukemia in June of 2007 and completed treatment in August of 2009. After a great year of getting to be a normal kid, she relapsed in August of 2010.  She had a leukemic tumor in her brain that was wrapping itself around her optic nerve, and small leukemic masses all around the outside of her brain and spine.   After several treatments, her end result was limited vision in her left eye (3/200) and her right eye was totally blind. Anything further than 2-3 feet from her face she cannot see. Sidney was getting adapted to her new life with blindness.  Now after seven years, Sidney is back in the cancer world for the third time with tumors that are high-grade, aggressive gliomas. Radiation will begin after the July 4th holiday and go for 6-7 weeks. After that it will be up to her family to determine next steps.  

Help us relieve the financial burden from Sidney’s family so they can focus on what matters most: providing solace for Sidney during this time of distress.

Please see Sidney's CaringBridge site for updates: 
Sidney's CaringBridge Site Updates 

From the page by Sidney's mother:

From Sidney's CaringBridge: 
I’m sorry I’ve been silent for the past 3 weeks. I don’t know what to say. My thoughts are a constant stream of 
“Is this real?” 
“What are we going to do?” 
“Am I doing right by Sidney?”
“How am I supposed to make these decisions?
“Try to be positive Jackie”
“Screw ‘positive’, this sucks”
“How do I DO this?”
“It’s worse this time than ever before”
“What if…”
But in person I’m a constant stream of
“Sidney is feeling good today!”
“She had some good moments today”
“We’re all good on our end today, thank you!”
“Sid is going to kick cancer’s ass!”
“We’re focusing on the good times!”

Because what am I supposed to say? I know I can say whatever I’m feeling…but what I’m feeling is pretty negative and I just refuse to live my life negatively every day. And I refuse to teach Sidney to live negatively…even though she has every right at this moment to live that way! So…I think fearfully every single day but I live positively each day (well, most days I try to! Just ask my fiancĂ© Jared, I’m not perfect at this but I do try!). Because it’s a choice. And I’m hoping it rubs off on Sid so she can get through as much of this with a smile as she can.

Sidney starts 30 rounds of targeted radiation today. She will go to the hospital every week day for the next 6 weeks for radiation and take an oral chemotherapy at night. Doctors tell us this course of action will slow down the growth of the tumors but will not eradicate them. We are told the tumors will never be eradicated and that more tumor growth is likely. We aren’t just sitting around accepting that diagnosis but it’s still a tough one to hear.

At this moment, Sidney is struggling emotionally more than anything. She is 11-years-old and she isn’t stupid. We’ve told her she has brain tumors and that she had surgery so the doctors could look at the tumors and remove some of it. We’ve told her that she is doing radiation to shrink the tumors. We’ve told her that the tumors are pushing on parts of her brain that cause her vision to get fuzzy, that cause her speech to get slurred, that cause her to run into walls when she walks, that caused the facial seizures, that cause her to feel wonky. We’ve told her that all the medication she is taking is to help the swelling in her brain and to help her not have seizures anymore. She understands all of that.

What she doesn’t understand is why everyone is making such a big deal of it. She says, “Why are people so worried about me? People make such a big deal of me being sick. It’s not a big deal, especially for someone like me. I’ll just get better, I always do.” And she’s right. She always has. This time there is just so much uncertainty and there is just not a reason right now to burden Sidney with that uncertainty. After all, she’s only 11. But she has had so many visitors, so many phone calls, so many gifts that she is confused about why she’s getting all that attention. (I am so thankful and humbled by all that attention, it’s honestly wonderful!) We are just trying to figure out how to balance that line between telling Sidney enough so that she understands, but not so much to scare her. So far we’re just doing the best we can.

So that’s where we are at the moment. I’ll end this by saying thank you to all who are praying. I have been struggling to pray because I just don’t know what to pray for. I want to pray for His will but I get so distracted and I just can’t finish one single prayer. He is a constant in my thoughts, but I continue to struggle to put my thoughts into prayer. So, those of you who are praying, thank you.
Jackie

https://www.caringbridge.org/visit/sidney/journal



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