Cole’s Story

Site created on September 18, 2020

As most of you know, Cole (17 years old) had 3 surgeries last fall due to the pneumothorax he experienced on his right lung.  In June, 2020, during a follow-up appointment to ensure that his lungs were healing/functioning properly, the surgeon saw some areas of concern on the chest x-ray.  The family was referred to a pulmonologist who requested a CAT scan.  Two nodules (one in each lung) and a tumor (on his upper right lung) were discovered and resulted in a referral to a hematologist/oncologist.  The PET-CT scan  performed revealed a tumor on Cole's left forearm, also.  A biopsy of the forearm tumor was performed by an orthopedic surgeon in Iowa City on August 11 and a lung biopsy was performed shortly after that.

In the midst of all of the appointments and tests, it was also discovered that Cole’s lungs are operating at 60% capacity.  He has been diagnosed with asthma and is allergic to most things:  trees, grass, dogs, cats, fungus, etc.  He is now taking a maintenance drug daily to help alleviate these symptoms.

On September 17th, a final diagnosis of Ewing Sarcoma was received from Mayo. This cancer is rare and aggressive; it is smart and likes to hide in the body.  In order to battle this cancer, the treatment will also be aggressive.  Cole is facing 9-12 months of chemotherapy, radiation, and surgery.  If the cancer can be eliminated and remains out of his body for 5 years, the recovery rate is 100%.

Cole, Diann, and Mike have decided to remain close to home and seek treatment here in Des Moines.  They are confident that they can get the same results here as their doctors will continue to consult with their collegues at Mayo and in Texas.  They are very blessed to have such an amazing support network including family, friends, classmates, coaches and coworkers and have been overwhelmed with the outpouring of support that they have already received.

Please refer back to this website frequently for updates.  We will be assisting with updates, but I'm certain Diann will be completing journal entries from time to time as well.  More information on how you can help will be provided in the near future.  In the meantime, please keep Cole, Diann, Mike, and Seth in your prayers. 

Informational links

Pneumothorax:  https://www.mayoclinic.org/diseases-conditions/pneumothorax/symptoms-causes/syc-20350367
Ewing Sarcoma:  https://www.mayoclinic.org/diseases-conditions/ewing-sarcoma/symptoms-causes/syc-20351071

Newest Update

Journal entry by Diann Williamson

Cole finished his second round of chemotherapy on Tuesday, February 23rd. Because he is undergoing radiation, he only received Vincristine this time and not Doxorubicin.  

Doxorubicin (Adriamycin) is one of the most powerful chemotherapy drugs ever invented. It can kill cancer cells at every point in their life cycle, and it's used to treat a wide variety of cancers. Unfortunately, the drug can also damage heart cells, so a patient can't take it indefinitely.

For the first time, Cole was able to go downtown for chemotherapy and return home without an overnight stay. Nurse Mike was trained on how to administer IV fluids at home to complete his treatment - see picture below. Cole made the couch his bed for the night, and Nurse Mike administered fluids as needed. All went well - maybe Mike missed his calling in life:)

Cole will complete his seven weeks of radiation on Tuesday, March 2nd. Today he came home with an antiseptic rinse and topical cream to deal with the radiation burn on his left forearm. To make matters worse, he tore a layer of skin off his arm while playing basketball. We will try to focus on healing and keeping the wound clean. If only a teenage boy would follow the guidance given by doctors and parents!

A full body PET-CT scan will take place on Friday, March 5th and an MRI on Monday, March 8th. This is the part of the journey that causes the most anxiety for me. This is where we find out if the tumors are responding to the chemotherapy and radiation. If it is working, I will again breath a sigh of relief, and we move on to the next phase of treatment. If it is not working...(stab to my heart). The very thought of this  brings tears to my eyes so I am going to choose not to live there.

Please continue to pray for complete healing and health for Cole!

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