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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11 Replies to “MRI Results and Some Pics”

  1. Reading these posts is such a powerful testimony to the extraodinary faith we are all so fortunate to share. If you can keep all these hills,valleys and in betweens in perspective and still praise our Great Lord, than so can the rest of us. We love your family and prayers will continually be said for Havyn.

  2. So many times in life I want to ask why. One day we will know the purpose for such suffering. Until then I continue to pray for Havyn to be healed, for the Almighty to touch her body and to be near to you all. Praying for your mama too!! ❤️

  3. Your pictures, post, and blogs are such a inspiration to me. November 13th will be the first anniversary of Kenny’s death. It still seems so unreal, but by the grace of God I am able to get out of bed in the morning. I get dressed, and I keep myself busy. I know these things sound simple but to me they have been a great accomplishment. I wasn’t sure I would get to this point. I had to admit to myself that I wasn’t really accepting Kenny’s death. I knew I wasn’t crazy I just didn’t want to face it. However, I am praising God. He led me to co-lead a women’s Bible Study during the fall that just finished. A year ago I could not have done that. Believe me I have along way to go and I will probably cry all day long on the 13th but I also know God is walking right by my side. After having said all that Havyn has been my inspiration to do a lot of things some days. When I see that great big smile I can’t help but smile too. Kenny loved Kids and I know he would have loved Havyn. Keep those cards and letters and pictures coming. Prayers all the time for Havyn and all of your family.

  4. Continuing to pray often and love the lyrics you shared. Havyn is an amazingly tough young lady with Jesus-filled parents leading the way. Sending love and hugs.

  5. Praising God for the good news. Continuing to lift your family before our Good Father.

    Amy Coleman
    (Havyn’s Port Friend she met at Chic-fil-a)

    PS. Even Still is my heart song on my cancer journey too.

  6. Praising God for the good news and praying that all growth of the little brain spot cease and decrease in size. Thinking and praying for you all. Praying for Jason’s bride, family, and friends. Prayers for all those going through chemo and more testing. Hugs and Love in Christ.

  7. Big prayers to our big God for my sweet friends who have big stuff going on.
    Psalm 147:5
    “How Great He is!
    His power is absolute!
    His understanding is unlimited.”
    Let that last line sink deeply into your hearts.
    🙏💕🤗 Ellen

  8. Rejoicing with you in happy news, mourning with you in sad news and still completely amazed at how Hayvn and her mommy & daddy have navigated this road! The Peays love you all and continue to pray for the complete healing of this little super hero!! ♥

  9. TELL HAVYN HI .GIVE HER A BIG HUG AND KISS.MR.GREG LIKES TO SEE HER.I KNOW THAT I WAS PUT WHERE I AM AT,AT A CERTAIN TIME,PLACE,AND THE PLANNED MEETING WITH YOU ALL .GOG IS GREAT,IN THE GOOD TIMES,AND THE BAD.YOU ALL HAVE A BLESSED THANKSGIVING.GOD BLESS.

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