MRI Results and Some Pics

We are so sorry that we haven’t posted Havyn’s MRI results sooner! Read below for those and make sure to check out the photos at the end!

So do you want the not-so-good news or the good news first?  Let’s start with the good news.  The optic glioma and the spinal tumors are stable and there’s been no progression of scoliosis.  PRAISING GOD for this!!! These are the reason Havyn started chemo, so we are grateful they aren’t growing. They haven’t grown a bit in 18 months so that’s a big time win!

Ok, so you know life goes…it’s a roller coaster.  Havyn said last week that she had a dream that she was on a rollercoaster and it had a hula-hoop in it and that Phineas and Ferb made the rollercoaster. HAHAHA. Funny stuff, but I am beginning to hate this NF-1 rollercoaster!!!!

So here’s the not-so-good news. This MRI reminded us of just how many abnormalities Havyn has going on up their in that noodle of hers. But we already knew that. What is new this time is a small spot on her brain that has grown from the MRI in July to the most recent one in October. Below  is taken from the Radiology report.

Supratentorially, a rounded area of high T2/FLAIR signal within the right globus pallidus is slightly larger than on the prior study, now 7mm, previously 4mm.

We hear about something growing after 18 months of chemo and get a bit concerned. However, Havyn’s oncologist Dr. Mikey isn’t too concerned with this growth because it is really small.  He did say that if it grows at the next MRI in January that he may want to do a biopsy.  

I can’t even tell you how frustrating this is. I can’t even think about a biopsy. I can’t even think about more chemo. I just can’t! I will, however, praise God for the good news that we received. I will think about how good our Heavenly Father is and how He loves Havyn more than I can even think about.  I will think about how He has gotten us through this journey.  I will think about the many others that are facing much harder news.  I will love on our girl and enjoy every minute with her! And I will pray and ask God for that tiny tumor to stay tiny or even to just go away!  

This not-so-good news, combined with a number of other things going on in our lives, have caused us to mourn a bit. Though the last month or two have been difficult, we know that God remains faithful. As we journey on we will do it with the strength that comes for the Lord. As he guides our paths we will be grateful for the season that we are in, even though it hurts more than I can even express. Kelly Clarkson wisely said, “what doesn’t kill you makes you stronger.” That’s good stuff. But even better stuff is found in a song our church sings. It’s called “Even Still” and it’s from their album Awake Worship – Christ Has Won. Here it is on Spotify and here are some of the lyrics:

You hear my cry when every word has left
Your Spirit breathes and fills my lungs again
When pain and loss have torn this wounded heart
Your mercy mends redemption’s work of art
Where could I go that you would leave me?
Oh God I know you’re near
Even still I will lift my hands in praise
Even still I will call upon your name, Jesus
And when my fear consumes me
I know you go before me
Ever faithful ever true

Even still I will meet you on my knees
Even still I surrender all of me, Jesus
And when my strength is failing
I know you’re fighting for me
Ever faithful ever true

I’ll remember what your love accomplished
On the cross where sin and death were laid to rest
I will hold to what your word has promised
That my king will come again.

I am constantly reminded that this is not our home.  We mourn the death of our friend Jason Spencer this week. This world is full of senseless violence. We are mourning our buddy Eric’s battle with brain cancer. Sickness and death were never in God’s plan. We recently met another family whose son also has terminal cancer and we are trying to love on his family as best we can. We had the pleasure of having several amazing people who have NF-1 in our home last week. Hearing their stories was inspiring but it’s also heartbreaking to know how much they’ve had to endure.

Can we just say, “Lord Jesus come quickly!” Isn’t it great news that this world is not our home? What the enemy intends to steal, he can’t. He doesn’t have the power to steal Heaven from us! Praise God for Jesus… what an amazing gift to us! So as we find ourselves surrounded by sickness, disease, death and anything else this life can throw our way… even still, let’s lift our hands in praise!

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