Week 24 – 2/5/16 MRI Results


The MRI this past Friday proved that the chemotherapy Brouwer has been on for the last 4 1/2 months has been ineffective.

The overall gross volume of the tumor has grown nearly 30% since Brouwer’s resection surgery in early September.  Additionally, the portion of the tumor hollowed by way of the resection surgery, another approximately 30%, has also regrown.  The tumor is increasing in size and is now slightly larger than a golf ball.

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I’ll spare most of the details but Brouwer’s birth was difficult.  After 30+ hours of labor, near midnight, Brouwer was born via an emergency C-section.  There was however a silver lining to the C-section in that I had the honor of holding Brouwer first.  And, not just that, but the time I had with him totaled 20 minutes or more and we were alone . . . just him and I in a small back room of the surgical unit.  It was late and the hospital was quiet.  He was wrapped up in my arms.  In that hush I held my firstborn and started to make promises . . . “I will always love you” . . . “I will always provide for you” . . . “I will always fight for you” . . . “I will teach you about Jesus” . . . and on and on and on.

I gave away the farm.

It’s almost a funny thing now to recall those pledges, mostly because they seem so entirely unnecessary.  As I think on Brouwer now, and my love for and commitment to him, I’d freely double-down on anything I vowed that night.  My resolve to love and protect my boy today seems infinitely more than it was in those first moments.

As I assume nearly all first-time fathers are, I was entirely naïve about what it meant to be “daddy”.  One area in which I was particularly unsuspecting was in how quickly and deeply I could love and be filled with a desire to protect and care for my little one.  I remember that night being surprised by Brouwer’s bright red hair.  I’m remembering being full of joy; Ginger was safe and Brouwer had finally arrived.  That joy translated to thanksgiving and awe and trust.

But I’m human and my thanksgiving and awe and trust so easily dissolve.  My knee-jerk reaction to the MRI results is so frustratingly human.  I ask all the common, obvious and immature questions like “why”?  Why Brouwer?  Why not –  me?  As I’m regularly reminded, even by age three, I was a little punk.  Brouwer, though like me in many ways, seems to be exactly opposite in all the right ways.  I envy his personality and the charismatic way about him that draws people to him . . . he’s funny, he’s intelligent, he’s thoughtful . . . it’s hard to get away from the immature-only feelings and accompanying questions that haunt me in this tough providence of an advancing tumor.  Why Brouwer?  It still seems terribly unfair and unjust.

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(Warning, this section is likely a little too honest . . .)

So now, again, we’re given the duty to make weighty decisions that will profoundly impact Brouwer’s little life.

I think back on the last five months and how helpless we feel in making these decisions . . .

First Doctor: “Brouwer has life-threatening pressure in his head, we need to operate now.”

Us: “Nice to meet you (shake hands), yes Doctor, please open our baby’s head and do what it is that you described and we barely understand.”

Second Doctor: (Introductions) “I think I can be successful in navigating between the left and right hemispheres of Brouwer’s brain . . . I’ll thread the knife through a ventricle . . . I think I can cut out a portion of the tumor.”

Us: “Yes Doctor, please drill the window you described in the back of our dear son’s skull and try to do the things you say but we certainly don’t understand.”

Third Doctor: “I propose we install a port into a primary artery directly next to Brouwer’s heart and, through that port, every week for a year, I’ll inject poison which will circulate through Brouwer’s entire body, some of which will interact with the tumor cells in his brain.”

Us: “Yes Doctor, that sounds like the best option, we choose that for our sweet red-head.”

Raw, for certain, but that really is how these decisions sometimes feel.

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Brouwer’s next chemotherapy is likely “TPCV”, which is a combination of four separate drugs.  We plan to start this nearly year-long regime next week (February 17).  We’re told that the chances of success, defined as the absence of tumor growth (not shrinkage), is approximately the same as his last regime.  Some kids don’t experience significant short-term side affects.  As far as I can tell, the most significant and probable short-term side affect is that TPCV is hard on blood counts, which means Brouwer will likely need blood and platelet transfusions.  The other common chemotherapy side affects (vomiting, nausea, hair loss, etc.) are also certainly in play.  What’s more difficult to contemplate are the potential long-term side affects, which include infertility and an increased risk for secondary cancers.  It is my understanding that TPCV is a harsher regime than carboplatin and vincristine, Brouwer’s previous chemotherapies.

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We wait on the Lord.  We claim His promise to “never leave or forsake us” and believe that “all things will work together for those who love Him and are called according to His purposes.”

We have been given many graces.  Brouwer is happy.  Brouwer is walking and can do most anything a three year-old should be able to do.  We’re blessed to have a family, a church, friends and even strangers who pray and care for us and our needs.  I’m blessed to work for an employer who has been understanding and generous.  Even the fact that we have Brouwer, that we’ve been able to have and love children, is a deep grace.

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Thanks to everyone who kept us in their thoughts and prayers this past week.  Please pray for us as we make next-step decisions.  Please pray for the “Tumor Board” at Lurie Children’s, which will discuss Brouwer this coming Tuesday (the 16th).  If you have not already, please like “Team Brouwer” on Facebook as updates can most immediately be seen there.  Only very rarely do I mention it, but thank you to those who have given on the YouCaring site these past few days.  We’re nearly at 50% of our goal, which is our best estimate of the first-year financial impact of this life-turn.  We note every contribution and are deeply thankful for all who are able to help us in this way.

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We are not unique.  There are many lives profoundly turned inside-out by childhood brain tumors and many other seemingly unjust and apparently randomly-occurring diseases.  Even as I type this, we know of a family in Poland whose 6-year old girl will have surgery today or tomorrow to address a brain tumor very similar to Brouwer’s.  Keep that scared and anxious family in your thoughts and prayers as well.

Not all who read this blog have put their trust where we have.  Still, I think we can all agree that the pains of this life are oftentimes seemingly senseless and terribly unjust.  I’d propose that this acknowledgment, that you feel the existence of the unfairness, is only because you can imagine things being fair and right.  I’d propose that this sense of right and wrong, instilled in us all, is an indicator of the existence of good and evil.  The “good” being a Savior.  Without the good, there would be no evil, which most assuredly there is . . . we have the MRIs to prove it.

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9 Comments

  1. I feel I know Brouwer a little through his Aunt and Uncle, their love for him shows so much that I can almost feel the love that all of you have for him. I pray for your precious boy and your family every day. One of the hardest things we are called to do is “wait upon the Lord”. May He continue to give you strength.

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  2. Dear Dan and Ginger,

    Our hearts are breaking for you and Brouwer in this recent update. Please know we have been praying and will continue to pray for healing, wisdom, and peace during this difficult time.

    Love,
    The Ballou family

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  3. I have been praying for your little guy….my heart breaks for you! Please keep us posted if you ever have a blood drive for Brouwer….I’m sure I’m not the only one who would show up! May God continue to graciously grant you strength and peace, wisdom and discernment, and a huge amount of grace for each day.

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  4. I am sure that not one of those who “liked” your post this morning really did. I am sure that not one of the thousands who read your post this morning thought that this would be the news today. This is absolutely not what any of us ever request when we beseech the Father on Brouwer’s behalf. But I can probably safely say that we did pray for answers that would bring glory to His great Name. Your words today, honest and raw as they are, do just that. When we come to the point of complete surrender of all things in all ways to our heavenly Father it requires of us some excruciatingly difficult days. The way in which your family walks this journey speaks loudly to the testimony of the hope we have in Jesus. It also gives new meaning today to the words that the Savior taught us to say…
    “Our Father, who art in heaven.
    HALLOWED be thy name…”
    We praise His name, even as the journey winds through this dark valley today, because we know that in this journey we are never walking it alone.

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  5. Dear Brouwer family, I attend the church you all visit in the summer and know
    Jon and Emily. I had a grandson that went thru cancer starting as a baby so I know
    all the angst you are suffering and the trips to the hospital and treatments altho
    my grand baby didn’t have brain cancer the rout ine is comparable. I want you to
    know that I pray for all of you as you walk this road. Remember that you are in God’s hands
    Babs Zandstra

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  6. Dan and Ginger, I’m so sorry to hear this news. We love you guys and are constantly praying for you. Praise God that he is a God of all comforts who surrounds us with his love and peace in difficult times. His grace will strengthen and sustain you, and we will be in earnest prayer for healing.

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  7. As the post above mine mentioned, Brouwer is loved by everyone who meets him, and even those who haven’t met him, thanks to word of mouth. You are all loved and very much prayed for. I admire how you are handling this with such grace and trust. God be with you all, and give you peace.

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  8. Thank you for your honesty, Dan and Ginger. We ask those questions of “why” as well. Brouwer is such a sweet boy. He is loved by all who meet him. God is using Him to touch many lives, and hopefully bring many closer to God. He has such a strong faith in his God, it is hard not to be encouraged by it. Love you all!!

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    • Dear Dan and Ginger
      Mary and I labor with you in what must feel like an insurmountable reality. Your words speak from the heart and I know that that heart and mind are being comforted by the Great Comforter. It feels so hard to love and support you from Charlotte, but please realize that you are loved by all that knew you at Sovereign Grace and those that have come to know you through the prayers of the saints.
      blessings this day on you and Brouwer,

      Homer

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