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.
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.
(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.
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.
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.
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.
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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