Beau's Journey

05/ 10/2021- Beau's Journey 

In January, Beau had thrush, which led to his parents constantly looking in his mouth.

While looking in his mouth to see if the thrush was gone, Taylor and Alex (his parents) noticed a bump that would compare to the size of a dried up pea under the surface of his tongue.

By late February, the bump had grown to the size of a marble. He was then referred to Iowa City to visit a pediatric ENT. After visiting Iowa City, and going under anesthesia for an MRI,  doctors thought the bump was a hemangioma. Beau was placed on medicine to reduce the size of the bump. 

Another month went by and the bump had grown again, despite being on medication. The doctor in Iowa City decided to raise his medication and consult with other physicians at an upcoming conference.  It appeared the next likely course of action may be a local steroid. If that failed, surgery was likely to remove the hemangioma.

Fast forward to May 3rd, when the family received a call from Iowa City. The consensus of the doctors at the conference was to remove the mass to avoid potential ulceration and keep his airway clear. Iowa City asked if May 5th worked to perform the procedure. The family was shocked to hear this news and shocked at how sudden they wanted to perform the procedure.

On Wednesday, May 5th, Beau had the mass removed. Following the procedure the family met with the doctor and she had some bad news. The mass everyone thought was a hemangioma was in fact a tumor. It would be sent to pathology for more answers on what the tumor was. The doctor felt good about the mass being full encapsulated and was able to take the entire tumor out.

On Saturday, May 8th,  the doctor met with Alex and Taylor. He walked in saying "we have some results from pathology", then pulled up a chair. Their stomachs both dropped. The news the doctor shared with him instantly shook their world. 

The tumor is called Spindle Cell Rhabdomyosarcoma and the cells were outside of the encapsulated tumor that was taken out.

Their 6- month old has cancer. The words no parent ever imagines saying. Beau has since been transferred to Oncology.

In the coming days Beau will be put through the ringer. He will have a PET scan and CT scan to see if the cancer has spread to anywhere else in his body. Since he's 6 months old and can't stand still, he will be put under anesthesia for those.

He will likely have another operation on his tongue to hopefully get everything.

After that and more pathology reports Beau will start chemo. There's a long journey ahead for Beau and his family. 

The Butler family is still in disbelief and trying to figure out what comes next.

The next few months are uncertain, as Taylor and Alex will struggle to navigate daily life with working and taking care of Xander and Jameson (Beau's brothers).

They have chosen to split their time with Beau in Iowa City, thus changing the daily routine for everyone.

While Taylor and Alex are hesitant in asking anyone for help, the reality of their situation is evident.

They will need immediate assistance with traveling back and forth to Iowa City, purchasing food during their time in Iowa city,  as well as monthly bills at home.

It is time for us all to come together! Please chip in what you are comfortable donating, and help their family as they enter uncharted waters with Beau's health.