We have detected that JavaScript is currently disabled. CaringBridge is best viewed with JavaScript enabled.

Shawn’s Story

Site created on April 12, 2020

We are setting up this site because we are so grateful for the incredible support and love our family has received over the last couple of days and we want to keep you all updated as much as possible. It is at times like these that we feel most grateful for the incredible friends and family that are in our lives. Thank you.

If you know Shawn, he seems to always be seeking out new challenges - and this diagnosis will just be another one of those challenges for him to dominate. This initial post is to give everyone an update and talk about how we are going to march forward with the news of Shawn’s brain tumor diagnosis.

To provide some background: On April 1st at 4:00am Shawn had a seizure and was taken to Bronson hospital for analysis, testing and observation. It was soon discovered that he has a tumor in the left temporal lobe of his brain. On top of that, doctors noticed a suspicious mole on Shawns back and wanted to do a body CT to make sure there weren’t any other masses. After performing a chest CT, Shawn was told he also had a mass in the lower lobe of his right lung. The doctors wanted to biopsy the mass to rule out another potential tumor location. Before the biopsy could be performed, he needed to have a PET scan, and this fortunately showed that the mass was not a tumor, but instead, aspirational pneumonia (which happens when someone aspirates fluid/food/tongue particles - in Shawns case - into their lungs - this happened during Shawns seizure) and could be treated with antibiotics. Because the lung biopsy no longer needed to happen, the next step was going to be a brain biopsy.

After getting discharged from Bronson pending a brain biopsy, as a family it was decided that we needed to seek out the best of the best brain tumor experts to care for our Shawnie. So after spending a couple days at home, and after consulting with a neurosurgeon and neuro-oncologist, we (Shawn, Connor, myself, Tim and Jill (Shawns parents), and Ryan (Shawns brother)), left Kalamazoo and headed to the Mayo Clinic in Rochester MN where Shawn is currently set up with an excellent team of physicians. We are grateful to have such a loving and supportive network who activated immediately to get Shawn so expertly looked after.

Update/Next Steps: Because of Covid-19 pandemic all surgical patients at Mayo are tested by nasal swab, blood work, and chest CT. Shawn had these tests performed Tuesday and we are happy to report he is Covid NEGATIVE! So that means surgery can proceed. Shawn is scheduled to have a special type of brain MRI (functional MRI) on Wednesday April 15th and Thursday April 16th Shawn will have a left temporal lobe resection craniotomy of his tumor. This surgery is to not only remove as much of the tumor as possible but also to get a more detailed understanding of the tumor and it’s pathology.

Following the surgery, we will stay in Minnesota to let Shawn recover, we will also be staying here as they will be testing the tumor so that they can determine the best treatment strategy going forward (monitoring, chemo, radiation, etc.).

We so appreciate the love and support from our amazing community. We feel blessed to have you. For the time being, there is nothing specific “to-do” - but, as we have a better understanding of the next steps, we will be sure to update this page.

With love,
The Joneses

**If you would like to send Shawn a card or any well wishes, our address is 591 Aquaview Drive, Kalamazoo MI 49009

Newest Update

Journal entry by Gillian Jones — May 18, 2022

Hi friends and family -

it’s been a while since we last updated but it’s Brain Cancer Awareness month and it lends the perfect time! I am not going to make this super long winded, because I ABSOLUTLEY could, but here is the gist of what has been going on...

October - MRI shows "growth", Shawn gets ready for radiation, the family prepares to move to MN for 12 weeks, Shawn's neuro-oncologist reaches out, says CANCEL radiation, wants him to "watch and wait" for another 3 months

December/January - Shawn goes through the preliminary testing to be entered into a Phase 3 Double Blind clinical trial (INDIGO Study/AG-881), all systems were go, we found out Shawn was the LAST PERSON IN THE WORLD to be accepted into the trial….and then he got covid which cancelled his appointments at U of M, THEN during the second round of blood draws, his liver enzymes were too high to fit the parameters! Due to the nature of the trial, everything is very time sensitive and the doctors/trial team were not convinced he would be able to enter the trial after all. Push came to show, he waited the 10 days, and had to perform all testing AGAIN (including MRI) and was finally accepted into the trial.

January - MRI shows NO NEW GROWTH, and trial drug is started (4 pills every day for a 28 day cycle, with bi-monthly blood draws and EKG at the Ravitz Research Center at U of M).

May - Shawn has been in the trial for 3 cycles, and his last MRI on Mothers Day showed NO NEW GROWTH!!!

We are all so happy with these clear scans and we are so grateful for all of the continued prayers, good thoughts, and positive energy that is put out there toward Shawn. Thank you from the bottom of our hearts ❤️

The Joneses

Read More of the journal titled "Go Gray in May!"

Patients and caregivers love hearing from you; add a comment to show your support.

Help Shawn Stay Connected to Family and Friends

A $25 donation powers a page like Shawn's for two weeks.

If you donate by May 12, your gift will be doubled, up to $10,000, thanks to a gift from Living Water Foundation.

Comments Hide comments

Read More Journal Entries

Show Your Support

See the Ways to Help page to get even more involved.

Personal Fundraiser

Support Links

Helpful Requests

Go to Ways to Help