Sydney had pain down the back of her left thigh that just wouldn’t go away and was affecting her sleep. A sports doctor figured out it was coming from her back and Sydney got an MRI. The MRI captured part of the tumor in Sydney’s right sacrum and we were referred to UCSF pediatric oncology for their opinion.
Sydney was extraordinarily kind and giving, fiercely stubborn, very intelligent and curious. She had a zest for life and drew people in. She was independent minded but treasured her friendships and her family. She was very creative and loved to make things, write and bake. Sydney was an excellent traveler and enjoyed exploring new places.
Breathe
Take one day at a time
Educate yourself
Be your kid’s advocate and question everything. Understand the caregiver’s motivations and operating environment (e.g. will the hospital allow anything except standard-of-care?). Change hospitals if needed.
Create your own tumor board if appropriate.
Know you are not alone. Connect with others who understand.
Sydney and what she/we went through motivated us. We want to help other families who have to go through this and ultimately we want to fund a cure. No child and no family should have to experience this. Sydney loved the Factor conference as well and we want to support the conference and the safe place MIB creates for these kids going through treatment to meet up and bond.
I’m really surprised at how well the bow campaign in September works. It’s easy to make and deliver the bows and it’s amazing how much you can raise this way. We have also continued posting updates on Sydney’s Caringbridge site which not only helps keep Sydney in people's hearts and minds but also MIB and the mission to make things better for the kids and their families.
Being active in the Outsmarting grant process is vital to us. To raise money to help fund research to find better treatments and eventually a cure is what keeps us going. Pushing to make things better for the kids and families fighting now and for those to come is what gives some kind of meaning to Sydney’s long battle and loss. It can’t bring her back or help us forget what she went through but it’s what Sydney would want and we do it to honor her.
It’s very important to us to expand the Osteosarcoma community and the travel award is a great way to do this. It allows a researcher or physician to come to the conference that wouldn’t be able to otherwise. This creates an education opportunity for them and invaluable interactions and connections with other members of the community. It also helps give a personal connection to the MIB families that are so invested and involved with this disease and its eradication.
A newly diagnosed family is probably in shock and feeling isolated and overwhelmed. To have the best fighting chance, families need to advocate for themselves by learning as much as they can and networking through the OS community. MIB Agents is a safe place for them to turn for extensive information and resources, various types of support and unconditional love. It is a community of like minded people with the singular focus of helping the kids and their families navigate this difficult journey in the best way possible. Donors should know that our medical system can be a challenge for many families. They should know that since OS is a rare disease, it doesn’t get the attention or funding from big pharmaceutical companies and the current standard of care is over 40 years old. This means that to change the path for kids now and in the future, a grass-roots campaign to improve treatments and find a cure can only come from the efforts of organizations like MIB. They should know that MIB is becoming known abroad as well…and the more we engage the global community to beat this disease, the more likely we are to find a cure. The reality is that donations are the lifeblood to all of these efforts and we are deeply grateful for every dollar that goes to support kids, their families and new research.
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