Bisaga Family

Spotlight on the Bisaga Family

Andrew Bisaga is an OsteoWarrior and member of the MIB Agents Junior Advisory Board, and his mom Mary is a member of the MIB Agents Family Fund Advisory Council. We asked the Bisagas to share their osteosarcoma story, advice they have for newly diagnosed families, and what inspired them to start a Family Fund Because of Andrew.

Can you share your osteosarcoma story with us? How and when were you diagnosed, what was your treatment, and what kind of surgery did you have? 

[Andrew] I was diagnosed in November 2017 at the age of 12. I was in 7th grade playing football and basketball when I developed pain in my right hip that would come and go but started to wake me up at night. After about three weeks we went to the doctor who ordered an x-ray. Ten days after what I thought was going to be a routine x-ray, and many tests in between, I started chemo for osteosarcoma. I received the standard MAP protocol of 18 cycles over what took me nine months to complete. I was given the option of donor bone graft or internal prosthetic using either a rod or compress implant. I chose the compress implant because it reduced the potential of needing revisional surgery in the future. I have been NED since July 5th, 2018.

What advice would you give to other parents and families who are currently going through treatment for osteosarcoma?

[Mary] If your child is newly diagnosed, start a binder to keep everything in one spot. Include a blank calendar to keep track of admissions, appointments, chemo schedule etc. It also helps to see progress. 

1. Consider multiple opinions, especially from Sarcoma Centers and especially in regards to surgical options. This can seem overwhelming but these large hospital systems are used to people coming from all over for second/third opinions so they help facilitate this. Your insurance may cover this as well.  

2. Set up a mode of communication (or have someone you trust set it up and be the administrator) for those who may not be in your inner circle but still deeply care for and are concerned about your child and the family. Private Facebook page, Caring Bridge etc. People ask questions out of genuine concern but it can become overwhelming and emotional to repeat yourself or even talk about it. Using a platform allows you to give updates on your terms. 

3. Network with other osteosarcoma families who have gone through this already.  Many times we have done a lot of the research so we can be a huge resource to those who are in the thick of treatment and need support from those of us who "get it". 

4. Give yourself Grace. No one will ever be prepared for this devastating diagnosis. You will not have all the answers or time to make the “best” decision. The best decision is the one you make because only you know your child and only you have your child’s 100% best interest in mind when making those decisions.

‍The toxicities of osteosarcoma treatment (physical, mental, emotional, financial and others!) can have a lifelong impact. Would you share some of the long term effects of osteosarcoma from a patient and family perspective? 

[Mary] Andrew is six years NED (no evidence of disease). Many of the side effects have been minor or manageable. He had minor heart "strain" so he will get cardiac echocardiograms yearly for life and will always be on a beta blocker. He has delayed processing from Methotrexate so we were able to get him a 504 plan to allow for extended test time.  We are uncertain of his fertility, which for now is not a concern, but may be in his future. I would say mobility issues with LSS  impact his life the most, currently (permanent limp, limitations on activities/sports, anticipation of future surgeries - Andrew will need hip replacement at some point due to wear and tear). For us as parents the lingering anxiety and PTSD has been the most challenging to navigate. It gets better over time but hits you when you least expect it or can be debilitating around scan time.

Sometimes the bad can bring out the good! Any golden nuggets or silver linings that came out of going through an osteosarcoma diagnosis and treatment?  

[Mary ] Going through this changes your perspective on life. We say "yes" more, especially to things that allow us to create memories. Going through treatment, while I never want to relive that, did give us quality one-on-one time that we would have never had and brought us closer together as a family. I believe his experience helped shape the path Andrew is taking in college and future career. He is studying pre-med and plans to become a doctor. It has also opened doors to be a part of something bigger. We became part of the MIB Agents family which has exposed us to new opportunities and friendships and allowed us to use our gifts to help others.

You are a member of the MIB Agents Family Fund Advisory Council. Can you share more about what a Family Fund is and what it means to you and your family?  

[Mary] A Family Fund is an opportunity to honor or remember your child by being a beacon of hope for others through raising much needed funds to support programs and research that directly benefit patients and families affected by osteosarcoma. For us, Andrew's Family Fund has been a source of healing. We are so grateful that Andrew is with us today but we can not walk away knowing this is not everyone's story and that the story hasn't changed in over 40 years. We feel a sense of purpose and power advocating for these kids and directly impacting the trajectory of this disease with every dollar we raise and every chance we get to create awareness.

What is the role of the Family Fund Advisory Council?  

[Mary] The Family Fund Advisory Council is made up of Osteoparents, who have a Family Fund, who can be a resource or support for new and existing fund holders. We also meet regularly to share, discuss, collaborate, and advise on how best to support the Family Funds.

Can you share some of the ways you and your family have fundraised for Andrew's Family Fund? 

[Mary] I started fundraising by partnering with restaurants to give a portion of their sales to our Fund. Then I ran the 2019 Chicago Marathon in honor of Andrew. We have also taken advantage of MIB Agents fundraising opportunities and organized our own local Outrunning Osteosarcoma 5K as well as been a part of the Bow Project, making and selling gold bows for Childhood Cancer Awareness Month.