Tuesday, October 8, 2013

Results: Medulloblastoma

We finally got the pathology back on Holland's tumor: Medulloblastoma (aka PNET).  You can Google it, or here's a website that has a pretty good description of it:

http://neurosurgery.ucsf.edu/index.php/medulloblastoma-treatment.html

It took so long because well, it just wasn't top priority since she had already died.  But that's ok.  We knew that whatever it ended up being, it didn't really matter because Heavenly Father obviously needed her back, so no matter what action we took, it wouldn't have made a difference and that in the end, she would have died anyway.

So here's the breakdown:

  • Holland was initially diagnosed with a Grade 1 Juvenile Pilocytic Astrocytoma (JPA) May 2012
    • it is rare for JPAs to mutate
  • The JPA mutated to a Grade 2 Pilomyxoid Astrocytoma (PMA) in December 2012
    • we started chemotherapy to destroy any lingering cells in January 2013
  • June 2013 we found out that the tumor had spread into her CSF (cerebral spinal fluid).
    • still thinking it was a PMA, we switched chemo regimens.
    • Had we known at this point that it was actually a Medulloblastoma, they would have done radiation - so glad we didn't end up having to do that, because now knowing that she was going to die anyway, I'm glad I didn't have to see her endure that.
And here's the crazy thing:
  • The tumor that killed her was a Grade 4 Medulloblastoma - this was a COMPLETELY DIFFERENT TUMOR than what she initially had - meaning the PMA did not mutate again because PMAs form from glial cells (specifically astrocytes) and Medulloblastoma originate from embryonic cells and in fact, researchers aren't even sure which cells they mutate from (but astrocytes are gray matter, the tumor she had was more so in the CSF).
Did you enjoy the medical lesson?  Essentially, it all means that she at some point developed another tumor.  And basically the oncologist told us that they have NEVER seen this before.  There have been 2 documented cases, but one was caused by radiation, and the other I believe was a genetic thing - but both were in adults.  They have never seen a pediatric case like this.

And get this: the protocol for treating Medulloblastoma is radiation and a combination of Vincristine & Carboplatin.  Holland was on those 2 drugs for 6 months and the tumor still progressed, meaning it showed some resistance to those drugs.  Other chemo regimens for it include Lomustine - yep, the drug we switched to in July when we found out it had spread.  Once again proof that this was the plan the whole time - Holland was to come to this Earth to get a body, show us how to enjoy life, give us joy, and ultimately die of a brain tumor and "return early" to heaven (although it's only "early" in the sense that children are supposed to outlive their parents).

I'm grateful that we don't have any regrets - we didn't cause the tumor and we did everything in our power to treat it.  And I'm grateful that Heavenly Father has so blatantly pointed out that this was the plan - honestly I don't think there could be more proof of that.  More than anything, I feel so blessed that we got to be her parents because she truly is an amazing spirit!  I miss my little sweetie-pie and look forward to when I'll get to see her again!

4 comments:

  1. WOW. Unbelievable - a totally different tumor! I'm glad you have some answers, I'm sure it must still hurt. Just read you last post about putting up fall decorations and loved that cute picture of Holland. Let's keep up with the lunches... :) Little Dallin is just precious and so sweet. Hope everything goes well on Friday! We'll be praying for your cute family.

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  2. Pretty much ditto everything Debbie said. Answers are nice but the ones that really matter are like you said, the ones from Heavenly Father. I am so glad that you are at peace even through the hard days that will pop up. Loved spending time with you the other day. I look forward to the next one.

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  3. This is so totally more proof of the plan Heavenly Father has. Amazing. Thank you for sharing. Love you guys.

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  4. Love your attitude. Blows my mind that it was a different tumor. Miss you guys a lot. Love you!

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