Week 76 – Children’s Research Fund

Over the last few months I’ve been getting after (trying to) give back to Lurie’s for all they have done for us.   Tonight I take another step by joining the board of The Children’s Research Fund, an organization whose sole purpose is to raise funds to advance medical research (www.childrensresearchfund.org).  All funds raised by The Children’s Research Fund are given to the Stanley Manne Children’s Research Institute, the research arm of Lurie Children’s Hospital.

Following are the remarks I intend to deliver tonight:

Seventeen months ago, in the fall of 2015, our then 2-year old son was diagnosed with a rare brain tumor in an uncommon location.

Our otherwise ordinary life was forever changed as, without warning, we were faced with the real possibility of losing our dear firstborn child.

Brouwer’s diagnosis came from a hospital which will remain unnamed.  The physicians at that hospital were excellent in many ways but when faced with their conclusions as to Brouwer’s diagnosis they offered us little hope.  In fact, as one might expect from a Hollywood movie, seemingly on cue, the lead neurosurgeon delivered to us the advice that it might be best to “take our son home and to enjoy what remaining time we might have together.”  We were told that we would not find a neurosurgeon anywhere who would attempt to remove any portion of Brouwer’s tumor.  Blindsided, we barraged the neurosurgeon with questions to try to understand “how long might he live?” “are there ANY options?”, etc., etc.,  The repeated and maddening response from the neurosurgeon was, “I’m sorry.”

Against his opinion that there was anything that could be done, we transferred to Ann & Robert H. Lurie Children’s Hospital of Chicago.

Still recovering from the emergency surgery to relieve his hydrocephalus and biopsy his tumor, Brouwer was in a very fragile condition.  Lurie’s sent their people to come get us.  Our first impressions of the Lurie’s transport team were strong.  They were professional and in control.  They were sensitive to Brouwer’s needs and to our requests.  They were funny.  They provided a desperately needed injection of hope.

Those impressions from our first interaction with Lurie’s transport team have been confirmed time and time again in the last seventeen months.

Those first impressions were confirmed in the skills of Dr. Arthur DiPatri and fellow Jerome Volk who safely and successfully debulked 1/3 of Brouwer’s tumor.  Those first impressions have been confirmed in our every one to two week clinic visits with our oncologist, Dr. Rishi Lulla and nurse practitioner Irene McKenzie who found a chemotherapy that has reduced the size of Brouwer’s tumor by nearly 50%.  Those first impressions were confirmed by the surgeon who installed Brouwer’s port, the surgeon who performed the fertility preservation procedure, by Lura Carstensen, Brouwer’s Child Life specialist, by the CNA’s who take vitals and height and weight, by the nurses who access Brouwer’s port, by the check-in ladies on the 18th floor, by Dr. Hawke Yoon who can blow massive bubbles using only his hands and common dispenser soap, by the infusion floor nurses, by John, the kind volunteer who brings us ginger ale and cinnamon teddy grahams and most certainly those first impressions that there’s something wonderful about Lurie’s have been confirmed by Dr. Stew Goldman who is always happy to do the “crazy dance” with Brouwer.

The road ahead is still long. Brouwer’s tumor is never expected to disappear entirely and, at a minimum, will need to be monitored his entire life. This coming Monday we’ll be at Lurie’s Westchester location for another MRI.  Dr. Lulla and Irene will call us on Tuesday with the results.  On Wednesday we’ll be back in this building to decide if Brouwer should complete his chemotherapy regime or if it’s finally time to ring the bell to celebrate the end of chemotherapy.

My wife and I could never repay Lurie’s for the hope they have given us but yet we feel compelled to do something.  Supporting the research initiatives of the Stanley Manne Children’s Research Institute makes a lot of sense for us.  Most often we have been dumbfounded by the ability of modern day medicine this journey has also made us keenly aware of its limitations and the need for more research, more advances, more cures.

I want to do my part.

Thank you for having me, I am thrilled to join this board.  I look forward to working with you all.

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7 Comments

  1. You will make a great addition to the board and having been through this experience it gives you such a great understanding for all the families and patients who will benefit from the research to come. What a great testimony to share and thank you for your willingness to share it. We continue to pray for all of you and specifically Brouwer, and that God willing, may continue to be a miracle of healing and grace. Love you all!

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  2. Linda MacKillop

    February 8, 2017 at 8:58 am

    Such a persuasive testimony of Lurie’s gift to you all and other families. I know from where you stand, the journey has been beyond hard. But from where the rest of us stand watching, you and Ginger have traveled with this road with unimaginable grace and strength. We admire you and prayerfully walk with you on this journey.

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  3. Dan,
    We are so moved by the way you and Ginger have traveled through this extraordinary journey and allowed us to peek in enough to your lives in order to pray specifically. Thank you for your amazing example of love, care, Faith, and communication.
    You are so gifted in your writing, Dan. Cori and I have been moved to tears as we read and pray for you and your precious family. Thank you for sharing your speech. We are praying that this new beginning of service will bring a rich blessing to you, for we know that your leadership and generosity in this organization will bless thousands to come.

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  4. Wow – good for you Dan! Your witness has been so powerful – I hope you know that. God is continuing to put you in places and situations where you can encourage and inspire others. So beautiful. Praying for Brouwer’s MRI next week!

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  5. I am proud of you Dan, both for your compassion and for your commitment. May God continue to bless your family.

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  6. Well written as usual. Ebenezer – hitherto hath the Lord helped us!

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