Week 86 – Wildly Broken

The last 24 hours has brought both very good news and very horrible news for many of our friends battling brain tumors.

We rejoice with Lindsay Lanenga Slovey and her family for the good news that Riley’s brain tumor continues to be stable.  We give thanks with Wayne Harder (father of eight!) and his family for the news that Wayne’s tumor also shows no change since his last MRI.  Those families are surely besides themselves today with joy.

Unfortunately the news of the last 24 hours wasn’t all good.

We fight for words to express our concern and distress but also love and support for the Paxton Elkins family who received results yesterday which show that Paxton’s tumor has progressed.  Paxton has a DIPG tumor.  DIPG tumors are terribly aggressive and have a 5-year survival rate of <1%.  The median overall survival of children diagnosed with DIPG is approximately 9 months.

Today we also mourn with the Alexa Weiss family.  Like Brouwer, Alexa was diagnosed with a brain tumor at two years of age.  Also like Brouwer, Alexa has been treated at Lurie Children’s.  With a very heavy heart I share that, after 8 years of battling her tumor, Alexa passed away yesterday.

Does anyone need further proof that something isn’t right here?  That sin is real?  That this world, while wonderful in so many ways, is also wildly broken?

*****

Brouwer is well.

Brouwer saw his ophthalmologist earlier this week who confirmed that Brouwer’s optic nerve looks great (changes in the optic nerve can indirectly be a sign that the tumor is growing).  Additionally, there are no concerns with Brouwer’s vision.  Brouwer also continues to go to his physical and occupational therapists whose reports continue to be positive.  Brouwer looks great and has given us no reason for concern.  The next MRI is scheduled for May 30th.

*****

As I mentioned in my last post, Ginger and Brouwer will be running in the Move For the Kids 5k walk/run on Saturday, June 10th.  We are looking for folks to support us either by walking/running with Ginger and Brouwer, by volunteering at the event or by donating to our team.  All money raised through out team will benefit pediatric brain tumor research at Lurie Children’s, are tax-deductible, and will be acknowledged by the Lurie Children’s Foundation.  We humbly ask that you consider a generous donation.

Link to participate: http://foundation.luriechildrens.org/site/TR/Events/MovefortheKids?fr_id=1730&pg=team&team_id=36030

To donate: select “Support Team Brouwer!” and follow the prompts.

To walk/run or volunteer: select “Join Team” and follow the prompts.  Note that early registration runs until Friday, April 21st.

(Note that Ginger is really hoping for a large group of folks to walk with her and the kiddos, please consider doing so!!!)

At Dr. Yoon's

At Dr. Yoon’s

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1 Comment

  1. I am grieved to hear of the sorrow that has broken into the lives of those who you mention in your post. There is always something in our hearts at such news that tells us this is not how it was meant to be.

    May God bring comfort and sustain the Elkins and Weiss families.

    In God’s providence you are well placed to give the support needed. May our Gracious God grant you the words to do so.

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