Week 62 – Brouwer’s First Transfusions

This past Wednesday, which marked the 14th day of the 6th chemo cycle, was a scheduled clinic day for us at Lurie Children’s.   The 14th day is generally pretty ho-hum.  Our standing Banner babysitters were out of town so we thought, “hey, let’s take Banner with us to the hospital”.

It seemed innocent.

Brouwer was asked to participate in a Lurie Children’s photo shoot onTuesday night.  We hadn’t stayed at the Ronald McDonald house since March so we reasoned that this was the perfect opportunity to 1) do the photo shoot on Tuesday night, 2) sleep at the Ronald McDonald House and 3) go to Lurie’s on Wednesday for a routine clinic visit.

Yeah, that’s not what happened.

The photo shoot was fun.  The stay at the Ronald McDonald House was good with the notable exception that they boys wouldn’t go to sleep and Brouwer kept saying that he “wanted to go home.”  That might have all been fine if it wasn’t for the news received in Brouwer’s blood results – Brouwer needed both blood and platelet transfusions . . . . and . . . they didn’t have platelets on hand to match his type.

10 1/2 hours later, we’re home.

For anyone reading who doesn’t have kids, adjusted for the fact that we had a 1-year old with us for those 10 1/2 hours, that’s the equivalent of something like 3-4 days.  I thought that translation was important to note.

. . . “hey let’s take Banner with us to the hospital” . . . not such an innocent choice after all.

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Good news is that Brouwer received the blood and platelet transfusions without much fanfare.  These transfusions were his first, ever.  No reactions.

Bad news is that I have to wonder what this might mean not only for the remainder of this cycle (i.e. will he need more transfusions?) but also might this mean that this, the 6th of 8 planned cycles, will be his last.  If Brouwer struggles too much to recover in this 6th cycle we’ll have to take that as cue from his body that enough is enough and we’ll need to forego the 7th and 8th cycles.

As a reminder, the chemo is working.  Brouwer’s tumor is down 38% from its peak.  Unfortunately, once Brouwer get off this chemo, he will never be allowed to get back on.  So, it feels like, “this is it.”  Sure, as Dr. Lulla often reminds us, “there are other options”, but we know that this option, the chemo Brouwer has been on for these past 7+ months is the only remaining chemo whose track record has been PROVEN OVER DECADES and which is ACTUALLY WORKING.

*****

Our November calendar is pretty stacked:

  • November 7: Ginger’s birthday
  • November 13: Brouwer’s birthday
  • November 15: Brouwer’s MRI
  • November 21: Banner’s birthday
  • November 29: Baby’s birthday

*****

My time to write this post has come to an end so I’ll finish with a plug and a plea:

Plug – Andrew Peterson, musician oft-quoted on this blog and whose work has been used to carry us through these past 62 weeks, will be on the south side in Mt. Greenwood on Saturday, November 19th.  I believe tickets are still available (1-800-965-9324).  Brouwer will be in attendance.

Plea – As I know you already do, please pray for the MRI on Tuesday, November 15th.  I shudder at the thought.  We are delighted to celebrate Brouwer’s birthday in 8 days; that’s two birthdays now that we thought we might not have.  But still, as any parent would, we want many, many, many more and ask that you continue to join us in making that request known.

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5 Comments

  1. We have Brouwer lifted in prayer and we are claiming his full recovery! God is good and Brouwer will be a healthy little boy! He’s got an amazing family and I know God has big plans for him! “Now faith is the assurance of things hoped for the conviction of things not seen” Hebrews 11:1

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  2. Dear Dan and Ginger:
    your Charlotte church family continues to pray for Brouwer and the entire family. May God continue to give you the courage and strength to trust in Him for his care.

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  3. Love and prayers to your amazing and strong family!!! Happy, Happy, Happy Birthday to Ginger, Brouwer, Banner, and special happy early birthday to the little one on it’s way! Thank you for all the updates and you are always in our thoughts and prayers

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  4. Thank you for the update. We will definitely be praying!!!

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  5. Dude that’s one hekkuva November. We’ll be praying for lil B.

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