William the Warrior Starts a New Battle

Pleomorphic xanthoastrocytoma (PXA) - that is a term that I never knew existed in my entire life. And then, August 2016, started losing his concentration and balance. We took him to doctor appointments after doctor appointments to then be told  he has a brain tumor. Surgery was going to be his only option and so that is what happened and our hero William had two brain tumors removed

 

 

 

 After four rough years of nearly daily appointments for counseling, physical therapy,  and occupational therapy he had almost made it back to himself; when his second round of tumors appeared in 2020. The second time was much harder on him; and while they successfully removed the tumors, they had to remove some of the surrounding brain tissue to hopefully prevent recurrence and reduce the risk of leaving some behind to grow. The surgeon went back after scanning seven times to make sure he got everything out. Unfortunately, the second surgery set him even further back on his motor skills and coordination.

 

 

 

 

 

Two more years of a combination of physical and occupational therapy and he was finally to the point where he was able to return to public school this year. 


However, the new tumors did not wait long to show up and we saw the first signs of them in 2021. The new tumors were confirmed not long after his 16th birthday, leading to his third battle with them. 


The team at Cooks Children’s Hospital feels that surgery is not the way to go this time and are recommending radiation therapy for six weeks every day Monday through Friday. Our first step is to go for mapping and the procedure of masking where they will create a mask to hold his head and face completely still during treatments on February 16, 2022.

 

 

 

 

There are a number of side effects from this treatment that we will have to remain hopeful do not happen that range from mild to horrifying; things we are trying not to think about and are remaining hopeful do not occur. 


The treatment center is over an hour and a half from our home, which means we will need to arrange for a place to stay, and for daily needs there, as well as covering the bills, mortgage payment, and needs of our home. The additional cost of gas and the maintenance of the car we will take to treatments is also a factor. As well as an internet hotspot to be sure that I will be able to continue to work without interruption and the kids can do distance learning during the time we are away from home without the fear of hotel Wi-Fi interruptions.  


We have also found out that the Ronald McDonald house will not be an option for us because they will not allow but one parent and the patient and I also have a five year old son who is so close to his big brother that he cannot sleep without having a story from him every night. 

 

 

 

 

 

 

We are asking for help with covering some of these expenses so our family can stay together to support William during his treatments and be there for him when he needs us most. 


Thank you for your kind donations and we will of course be updating you all every step of the way.