Update on Riley: Answered prayers (19/11/13)

Dear family, partners, and friends

Firstly, the update:  We heard back from Leland’s neuroradiologist friend a few hours ago, and both he and Leland concur – the abnormality in Riley’s pituitary does not appear to be a tumor.  They believe it is probably something else, a rare growth called a “Rathke’s cleft (pars intermedia) cyst”, a benign, fluid-filled sac about the size of half a penny.  If you’re wondering (as I did), what the difference between a tumour and a cyst is:  a tumour is a mass of growing cells (which can occur anywhere, and continue to grow, causing problems), while a cyst is a little sac that contains fluid and rarely causes problems.  In Riley’s case, the cyst appears to be located on the outside, not the inside, of the pituitary gland.

Good news #1.

What does this all mean?  For starters, we’re not thinking any longer about brain surgery or if we need to leave Kenya to have it done.  Our next step in troubleshooting Mighty Mouse’s small stature is to test her growth hormone levels, as the pituitary gland, for whatever reason, may not be sending enough and she may need daily injections to help her grow.  She will need a half-day stay in hospital for this test, but she won’t require the longer test for cortisol that takes 48 hours, as the cyst being located on the outside of the pituitary makes this one no longer required.

Good news #2.

In some cases, these cysts can increase in size over a period of several years, so we will need to repeat an MRI scan in a year to see if this is happening.

We’re pretty emotionally wrung out.  I’ve been in a funnel since the initial MRI report three days ago:  starting out at the wide end, time seemed to stand still as we considered a wide range of possible outcomes–surgery to remove a potential tumor?  Do we do it in Africa?  This particular surgery happens by boring a hole through the sinuses, are Riley’s sinuses formed enough to allow this?  Now that we believe it’s not a tumor, the more awful and invasive outcomes fall away and we move through the funnel where the possible outcomes narrow–a half day test, potentially growth hormone injections, all of which can happen here in Kenya.  Whew.

Secondly, we are giving thanks:  I remembered this morning that we’re approaching the American holiday of Thanksgiving in a week or so, and I am moved by the timing.  Overwhelmingly, our response right now is relief and gratitude, and we are giving thanks for what we know today:

      • We are thankful that Riley’s small stature does not appear to be due to something that requires neurosurgery to fix.
      • We are thankful for the clinical excellence and compassion of doctors like Leland Albright and his neuroradiologist friend.
      • We are thankful for our community of family, partners, and friends–I realised last night that we had received encouraging words and prayers from every inhabited continent in the last 24 hours.  As time seemed to stop around us in the last few days, we have felt carried by your love and encouragement.  Thank you for your outpouring of love.
      • We are thankful for a loving Father who walks, grieves, and rejoices with his children:  in the ups and downs of the last few days, we have experienced a supernatural amount of peace as we processed and undertook the next steps.
      • We are thankful for the power of prayer:  in our last update, we asked you to pray for three things, and within 10 hours one of them had been answered, and one had been made redundant/no longer required (the 48 hour test).  Pause and think about that for a minute, and be encouraged by it.  The interconnectedness between the natural and supernatural, the physical and the spiritual is laid bare, yet again, thanks to your prayers.
      • We are thankful that in this life of obedience to God’s call, where faith is spelled r-i-s-k, and sacrifice is tangible, that Riley’s story continues to be one of God’s provision and care, and that we are not (at this stage) considering the possibility that so many other families and children live with:  lives permanently altered by disease.  Working where we do, we are not under an illusion that we have been given a guarantee or certainty for health and safety in this life–no, that illusion is very quickly stripped away when you are surrounded by suffering people who love God–but we are today incredibly grateful for a Father who tells us that the restoration of all things is coming.

“Lord, you have assigned me my portion and my cup;
you have made my lot secure.
The boundary lines have fallen for me in pleasant places;
surely I have a delightful inheritance.
I will praise the Lord, who counsels me;
even at night my heart instructs me.
I have set the Lord always before me.
Because he is at my right hand, I will not be shaken.”

-Psalm 16:5-8

Amen.

– A.

PS:  if you are interested in the medical details of what this all means, have a look at these studies.  I don’t understand any of them, but Mardi tells me they are outstanding:

http://www.urmc.rochester.edu/encyclopedia/content.aspx?ContentTypeID=134&ContentID=86

http://m.edrv.endojournals.org/cgi/content/meeting_abstract/33/03_MeetingAbstracts/SUN-596

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Author: steeres

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6 Comments

  1. Praise God!!

  2. So happy for all of you that things are looking up!

  3. Thank the Lord!

  4. Thrilled and thankful. God bless you guys, you truly are inspirational.

  5. Praise the Lord will continue to pray for Riley and all of you. Do you mind if I let my churches prayer team and chain know?

  6. No problem Deb – thank you x

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Update on Riley (18/11/13)

Summary As we mentioned in our last blog post, our six year old daughter Riley's growth has been poor for...

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