Alex’s Story

Site created on April 23, 2020

Hello everyone! Thanks for stopping by. For those of you who may not know the details, I'll give a brief summary of my health journey. More detailed items can be found in my journal entries. 


I was born with a disease called Ollier Disease (recently learned that I've been pronouncing it wrong my whole life haha. Think french when saying it out loud). It is a very rare bone disorder that makes soft tissue tumors grow on my skeleton. It causes bone deformities and weakness and because of it I have had so many surgeries I have lost count. Many consider it a disease of childhood because the tumors are most active when you are still growing. In some rare cases, however, the tumors can turn malignant when you are an adult. This is, unfortunately, what happened to me. I have a tumor in my sacral spine that needs to be removed because of malignancy. It will be a two-part, two-day surgery. The first will be on May 20th and the second on May 22nd.


These surgeries bring a lot of anxiety with them in normal situations but especially now. Due to COVID-19, my surgeries have been delayed and I am grateful I am even able to have them in the middle of a worldwide pandemic. That being said, it is a horrible time to be in the hospital right now. I will most likely not be allowed to have visitors and will spend my weeks in the hospital alone. Even so, I do not want to delay this any further and will do what it takes to be considered "cancer free." 


I am using this site to keep all of my loved ones informed on how I am doing. In a time where nobody can visit each other, I figured it is especially important. I also thought putting my thoughts into words might help me process the major changes that this surgery will have on my life. I know it will not be easy or painless, but I know with the support of my friends and family (and the copious amounts of chocolate that I am sure I will consume) I will get through it. 


Lastly, this cancer has been in the works for over a year. Because it will be very difficult to try to retell the exact events, I will just copy and paste the email updates that I had been sending my family throughout the year in the journal entries below (you have to scroll all the way to the bottom to see them). It might take a while to read but it's honestly a wild ride. Getting a diagnosis and being heard by my healthcare team was, at times, a huge struggle. 

Newest Update

May 23, 2021

Journal entry by Wolf Gieske —

Warm greetings to all,

I had actually written a much longer paragraph on my many thoughts and feelings about Alex's one year cancer-free milestone yesterday...

But after reflecting on how the past year has rallied so many behind my daughter, I have decided that maybe "a picture truly can be worth a thousand words" - and that the right photo could represent the up-to-date results of all of the professional skills, prayers and best wishes from everyone who had a part in showing their concern, support and true dedication for my daughter during her ordeal and beyond... 

So, here's to many more tea parties, such as the one Alex and Zen had in this photo from last week! 

Those stunning and magical smiles really say all that matters!!   
Read More of the journal titled "May 23, 2021"
Patients and caregivers love hearing from you; add a comment to show your support.
Help Alex Stay Connected to Family and Friends

A $25 donation to CaringBridge powers a site like Alex's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?

Leave a comment of support for Alex

Did you know? A quick comment, no matter the situation (positive or negative), can boost morale by 28.2%.

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
SVG_Icons_Back_To_Top
Top