It has been awhile since we’ve written an update on Elisha. Many of you have been checking in and asking how he is doing and how we are doing. Thank you so much!

These updates will probably be fewer and farther in between as we settle into our new normal. His diagnosis and treatment will more than likely progress much slower than the last couple of months have been.

Right now Elisha is doing wonderful! He’s been completely headache-free since his surgery and he’s full of energy! It does our hearts so so good to see him be his normal, witty, playful self. We are even gearing up for a spring FULL of baseball & softball! 

However, we have still not been approved for his immunotherapy drug. We were supposed to start peg-interferon a month ago, but problems with the pharmaceutical company has caused delays. We are thankful at times for this because life feels normal, but then we are reminded that there is nothing keeping Elisha’s tumor from growing. These unknowns can be fear-inducing. The pharmaceutical company for peg-interferon makes it very hard for providers to fill prescriptions. Our wonderful case worker at CHOA is on her 3rd attempt to get his prescription filled. One major reason this is an issue is because Interferon was not originally a drug proscribed for tumors. It was a drug that was mainly used to treat melanoma patients and at a much higher dose. But Interferon has been used in the tumor world for years, so our doctors are used to this pushback and continue to reassure us that they will get it for us soon. Please pray that Elisha gets approved soon & pray for all of our hearts as we enter into this new season. 

Elisha’s Oncologist said that the symptoms from the medicine that they anticipate will be redness around the injection area (we are to rotate between his left arm and right arm each week) and he will probably have flu like symptoms the first 24-48 hours after each of his injections. We get to choose when we give him his weekly dose and I believe we have chosen to go with Sunday evenings. We want him to have a somewhat normal spring with baseball games on Saturdays and enjoy his “big boy” class at church on Sundays that he’s so excited to be a part of. Elisha’s wonderful 1st grade teacher Ms. Harvey has offered to work with us and will begin sending his Monday work home on Fridays if he’s unable to attend school due to sickness. We are SO grateful for such a wonderful school that has been incredibly kind and supportive. 

Since our last update, Elisha has met with his Radiation Oncologist to simply discuss what radiation will look like in his future. He’s met his Endocrinologist who will be monitoring all of his hormone and growth development for the years to come. And he will meet with his Neuro-Ophthalmologist next week for an in depth (2 hour) eye exam. His tumor is very close to his optic nerve, so this visit will create a baseline to help them monitor and prevent his tumor from creating any sort of vision issues. 

He had his first MRI since surgery in February, and we met with his Neurosurgeon the following day to review the results. It was a very encouraging visit. A month post-surgery and his tumor was MUCH smaller than his last scan. We will continue to have MRIs over the next 12 months to see how fast his tumor could be growing. However, because we will have them so frequently, our Oncologist is allowing us to do limited MRIs which are only 5 minutes and non sedated. We are finding out that Elisha is somewhat claustrophobic as he had a mini panic attack during his first one. Please pray for our future scans! 

Alex and I have shared with each other how thankful we are for many aspects of Elisha’s situation and diagnosis. Elisha’s diagnosis came before any irreversible deficiencies occurred which is not always the case with this kind of brain tumor. His tumor is also majority cystic, which makes any treatment more effective. His tumor also seems to be VERY slow growing post surgery. We haven’t had to tap his Omaya (brain catheter) once since surgery. We’ve learned that some Craniopharyngiomas have to be tapped 1-2x per week. However, we’d not be telling the truth if we said that we still don’t have moments of paralyzing fear and uncontrollable irrational thoughts about Elisha’s future. Trusting the Lord and depending upon Him for peace and comfort has been a war with our flesh since December 22nd. 

There is a song called “Seek and Find” that I’ve had on repeat anytime I feel discouraged or fearful regarding Elisha. The lyrics paint a poetic picture of my heart and how we will keep fighting to find the goodness of the Lord, even now! 

Part the clouds over my soul

And let the light pour in

I need to see it breaking through

I want to feel it on my skin

I'm like a flower to the sun

Where do I turn until You come?

You are the light

I need the light

You are the well that won't run dry

You are the river underground

I'm gonna dig until I find

The living water deeper down

Oh I am desperate for a drink

I'm in the desert, You're the spring

You are the life

Keep me alive

I'm putting all my hope in You alone

And when I cannot see, I will keep pressing on

Still willing to bet my life

That whoever seeks will find You

I'm gonna seek and find You

I lose the shoreline as I drift

Down in the bottom of the swell

Forget the daylight as I sit

Here in the belly of the whale

But then You pull me from the deep

I feel the earth beneath my feet

I still believe

Help me believe

I'm putting all my hope in You alone

And when I cannot see, I will keep pressing on

Still willing to bet my life

That whoever seeks will find You

I'm gonna seek and find You