Spinal Taps & Homeschool

Friday March 18, 2016

We love to homeschool.  Technically, our kids are enrolled in a cyber charter public school.  Cyber means work online from home, charter means accountable to the state of PA and public means completely free.  Each of our kids gets a computer, a printer, science supplies and new textbooks every year.

Scott and I see many advantages to this approach to education for our family.  First, it gives us the time we need to build a one-on-one relationship with each of our kids.  Time is our most valuable resource and Chester County is exploding with opportunities that compete for our time.  Along with our parent/child relationships, homeschool gives us the time we need to teach our kids about the Lord.  Deuteronomy says teach your kids diligently, when you sit and when you rise, share your heart and know where their heart is.  The “public” part of our school means everything is free, and with the way our family is growing, free is good.  Last, homeschooling gives us as parents the ability to pray and find a specific place of outreach for each of our kids based on their interests and personalities.  For example, our daughter Kiana played soccer with our local middle school’s girl soccer team this past fall.  That meant two hours every day on a public school campus, and twice a week on a team bus traveling to games.  What an experience!  If there were any curse words she didn’t know, we’ve now filled in the gaps.  On a more sincere note, Kiana was able to build friendships with an entire team of girls in Coatesville, an important foundation for developing her heart for the hurting and sharing her faith.

Today was Theo’s 15th spinal tap in 17 months.  I am in awe of him for his endurance and resilience but I also ache for his little body.  I have had 7 epidurals in an 11 year span and on occasion I still have an ache in my back.  A spinal tap is much more invasive than an epidural.  I can’t imagine the ache in his back on rainy days.

There is a significant statistic linking Leukemia with brain cancer in little boys.  The statistic is so significant that boys with Leukemia have a 3 year treatment plan, whereas girls with Leukemia only have a 2 year plan.  Over the course of this plan Theo will undergo 22 spinal taps during which they will soak his brain (via his spinal fluid) in chemicals.  These chemicals are proven to prevent brain cancer and eradicate hiding cancer cells, but they can also have serious and lasting effects on Theo’s ability to learn.  One of our most devastating doctor/parent meetings was when our medical team went over all the side effects of Theo’s medicines.  The thought of Theo struggling to learn broke my heart the most.  Afterall, we love to homeschool.

It’s time to register Theo as a Kindergartner at PALCS.  As I continue to wrap my head around who we are as a family and what God is doing in our lives, I am both thrilled yet sober-minded at the thought of starting Kindergarten with Theo next year.  I count it a privilege to be his mom and spend the morning with him learning to read and write, but there’s a cloud of concern as I wonder if we’ve messed him up.  If you have a chance today, will you please pray for Theo’s ability to learn?  His brain, his connections, his short-term memory, his long-term memory, his processing, his attitude and his confidence?

Thank you for praying for us today.  Your prayers equated to a smooth morning commute, a quiet morning of painting, and another uneventful spinal tap.

Here is Theo’s painting…

TheosPainting

Here is Scott and Theo “high-fiving” from a distance before Theo was sedated…

Theos5           Scotts5

Hosanna

John 12

12 The next day the large crowd that had come to the feast heard that Jesus was coming to Jerusalem. 13 So they took branches of palm trees and went out to meet him, crying out, “Hosanna! Blessed is he who comes in the name of the Lord, even the King of Israel!”

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Praying Through February

March 1, 2016

Theo’s day at CHOP went well this month. His counts continue to be in a medium range which keeps him at a 75% dose of chemo. This is the first time that he has not been neutropenic for more than a short time. The word neutropenic refers to having an ANC below 500. When your ANC is below 500 doctors recommend that you avoid public areas because your immune system is too low to fight the common germ. I’m so thankful to say that Theo hasn’t been neutropenic for two months straight now. I’m also thankful to say we haven’t had any extra hospital days this month, to God be the Glory.

This is a picture from our chemo day, as you can see Theo is blocking the camera. He really shuts down on his chemo days.  He gets very sad and quiet and he hates it when I take his picture. I always try to take at least one shot of him, just for memory’s sake. (Hopefully this doesn’t make me an insensitive mom.)

Maintenance

My personal theme for February was prayer. Back in college I lived in an on-campus apartment with 4 fantastic ladies. We had this odd-shaped coat closet where beyond the hanging coats was a slanted crawl space. As an introvert trying to find alone time, but also as a growing Christian trying to figure out prayer, I put down a carpet piece, ran an extension cord under the door to plug in a lamp, and staked out the space as a ‘prayer closet’. I had 3×5 cards, markers and wall putty to keep track of the things that weighed on my heart. There was one 3×5 card with one word on it written in a thick black sharpie marker. It read, “Scott.” Man, I couldn’t figure that guy out. 😉

Ever since college I have always had some sort of prayer closet, but as with everything in life my prayer life has changed through the seasons. During our early years of marriage I loved Stormie Omartian’s series called The Power of a Praying Wife (Mother, Woman, etc.) It’s a series worth reading and keeping nearby. It models how to use scripture to pray according to God’s will, not just for a new car or a great tan (not that I have ever prayed for those things, ahem).

A few years ago another resource that really shaped my view of prayer was Andy Stanley’s sermon on The Lord’s Prayer. It’s seriously worth an hour of your time. I can’t find the link, but I’m working on it.

Right before Theo was diagnosed I would say my prayer routine was consistent but really disorganized.  I had an unused Christmas notepad and a pen and I would just jot down the things on my mind. Once I could write down my immediate thoughts and worries I was able to turn my thoughts to the Lord and the things that matter to Him. Crazy enough, I recently found the scrap from October 2014, the week Theo was diagnosed.

Blog_Praying

Last month Scott and I rented the movie, “War Room.” As corny as it may sound, I was really inspired to get back on my game when it came to prayer. I went up to my prayer closet and cleaned out all my scraps of random thoughts and verses. I thought and prayed and looked up some core Bible verses for our family. Here’s what I’ve come up with for the kids so far…

Prayer4Blog

The left side of the page is all Bible verses. These are the things I know to be true.  I know that these things line up with God’s heart and His will because these are His words, therefore I know He wants these things even more than I do. The right side of the page is blank. That’s where I write down some more specific, time sensitive things that are on my mind. It’s neat to see how God answers my concerns.  It’s also interesting to see which concerns remain unanswered and get transferred to the new page as time goes on.

Prayer is just talking to God and building your relationship with Him, just as you would a friend here on Earth. Because we know that scripture is true, it’s a very handy practice to pray a Bible verse, especially when you don’t know what to say. I hope you get the chance to examine your prayer life sometime soon and take the next step of intent, whatever that may be.  We know many of you are already praying for Theo.  We see the end result of your prayers and we are grateful.

Theo’s next appointment is March 18th. This will be a spinal tap and IV chemo, always a big day for Theo and our family. We would love your prayers for safety, comfort, healing and peace as he undergoes sedation and receives chemo both via IV and in his spinal fluid.

Come On Spring

Psalm 19
7 The law of the LORD is perfect,
refreshing the soul.
The statutes of the LORD are trustworthy,
making wise the simple.
8 The precepts of the LORD are right,
giving joy to the heart.
The commands of the LORD are radiant,
giving light to the eyes.
9 The fear of the LORD is pure,
enduring forever.
The decrees of the LORD are firm,
and all of them are righteous.
10 They are more precious than gold,
than much pure gold;
they are sweeter than honey,
than honey from the honeycomb.
11 By them your servant is warned;
in keeping them there is great reward.
12 But who can discern their own errors?
Forgive my hidden faults.
13 Keep your servant also from willful sins;
may they not rule over me.
Then I will be blameless,
innocent of great transgression.
14 May these words of my mouth and this meditation of my heart
be pleasing in your sight,
LORD, my Rock and my Redeemer.