Beads of Courage
Today is Mardi Gras… images of parades, King Cakes, wild parties and those ubiquitous beads are all around. For me, the Mardi Gras beads bring to mind another set of beads… Beads of Courage. Until Mikey got sick, I had no idea Beads of Courage existed. But they do. And they mean so much to…
We Need YOUR Voice
Surveying Parents to Inform Physicians For years we looked to medical professionals to tell us what we needed to know to treat our son’s medulloblastoma. We trusted them and we followed their advice. Since 2013, we have been working with families who have lost their child to cancer and we’ve focused our attention on post-mortem…
January 2021 Reflections
It’s January 13th, exactly 2 months since we started this trial back in November, joking about it being a “Novel Approach” to start a fundraising campaign on Friday the 13th. However, there was nothing unlucky about it because we SURPASSED our goal, raising $272,977 dollars thanks to your generosity and support. So the TNF Immunotherapy Trial…
Golfing For A Cause
The air is getting crisper, the days are getting shorter, leaves are changing color and that means…. boy’s golf and the District 203 Mikey Gustafson/Connor Hunt Match Play Cup! (Formerly called the Ryder Cup.) The Match Play has been a tradition since 2014 as a way for the NNHS golf team to honor the loss…
Our Class of 2020
In the past, May always meant tulips, breaking out the lawn furniture and graduations. Covid-19 hasn’t stopped the tulips or kept us from sitting outside (albeit 6 feet apart), but for the Class of 2020 graduations have been cancelled or hopefully, only postponed. In the meantime, there is a lot of sadness, disappointment and uncertainty…
Light That Seeps Through a Broken Heart
I can’t tell you how often people are dumbfounded on how I can so enjoy working with a pediatric brain cancer foundation, especially one focused on post-mortem tissue donation. I guess they imagine the sadness and loss that these families endure and assume it permeates their lives and my work. That couldn’t be further from…
Growing During Isolation – And the smell of fresh baked bread!
Fear, uncertainty, disruption, crisis these are the words swirling around us these days. It’s hard not give in to despair. I can’t stop this virus, however I can share what I learned while caring for my son, Michael when he was stuck at home sick with cancer.
Why Swifty matters?
As a Kennedy Junior High school counselor, I have met hundreds of families and thousands of students! My first introduction to the Gustafson Family began with Ian. He proved to be a fabulous student and a kind, caring young man! Then along came Michael and Bridget…of course, I had heard about Michael’s cancer diagnosis and…
Because of Swifty’s Post-Mortem Tissue Program
Swifty is working to give more families a chance to make the life-giving choice that Michael made with his “Master Plan.” After a child succumbs to brain cancer, donating tissue advances scientific research and can provide consolation for a family during their darkest hour. Today less than 5 percent of families are donating, but when…
Love and Comfort in the Final Days
If I had a choice, I would be an “expert” on how the brain works, American history or songs from the 70’s. Unfortunately, I have just a little knowledge of those interesting topics. I do however have experience in losing a child to cancer, not a topic anyone would ever sign up to learn about….
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