New Spectacles

005

Friday, September 8, 2017

Theo failed his eye exam this past month at the pediatrician.  It turns out he has an astigmatism in his left eye.  He now has glasses and we’re patching the good eye a little each day.

As cute as he looks in his glasses, I think Scott and I are a little discouraged.  You would think this would be a small spec compared to all we’ve been through, but, especially after the Lyme’s and now this, we find ourselves asking, “Why Theo, Lord?  Can’t you just leave him alone for a little while?”

Would you please pray that Theo isn’t discouraged by this?  He’s been so resilient thus far, I’m sure it’s because you are praying for him.  If you would also pray against weariness in our parent hearts, that we would continue to rejoice in all the God has done in our family, and that we would trust that God loves Theo and has a great plan for his life, we would be grateful.

Praying for Texas,

and stay safe dear Floridians!

Psalm 139

13 For You made the parts inside me. You put me together inside my mother. 14 I will give thanks to You, for the greatness of the way I was made brings fear. Your works are great and my soul knows it very well. 15 My bones were not hidden from You when I was made in secret and put together with care in the deep part of the earth. 16 Your eyes saw me before I was put together. And all the days of my life were written in Your book before any of them came to be.

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Spinal Tap Prayer

August 4, 2017

Today is Theo’s second-to-last spinal tap.  Will you please pray for him?  Please pray for peace of mind, safety, comfort and a steady hand for the doctor.

Thank you kindly

1 John 4:18

There is no fear in love.  But perfect love drives out fear.

Hills and Valleys

July 23, 2017

I am well aware of my age.  I am well aware of all that my body has been through during the last 15 years of motherhood.  I am well aware of the statistics of increased instance of Down Syndrome and other chromosomal differences in children born to women 40 and older.  But at this point in my life, I can’t imagine looking into the face of God Almighty and saying, “No thank you.  No, we don’t want any more children, but thanks.”  And so, Scott and I, hand in hand, live on into our forties.

Living with teenage daughters is awesome.  Some things are a little tricky though, like sneaking pregnancy tests into the house.  So it’s quite a rush when I hide my box, wait for a quiet moment, and discover what I already know to be true.  Back in April was such a night, and with my positive test hidden under my old t-shirts, I was racking my brain on how to tell Scott.  It’s one of my favorite moments.  I could recount for you every. single. time. I’ve told Scott that I was expecting.  But at this point it was midnight, Troy was asleep on my chest, and I was waiting for Scott to come to bed.  I had the biggest smile on my face, but I was trying to hide my news until the morning when I could be more creative.  Scott climbed into bed, rolled over and said, “Are you alright?”

Forget creative.  With the moonlight shining in our window, Troy’s heart beating against mine, I whispered, “I’m pregnant!”

With a big smile Scott simply said, “Congratulations.”

A baby is a gift in any form for any amount of time.  Just knowing we were expecting was an exciting joy all on its own.  We had decided to announce after our first ultrasound, so I did my best to suck it in and act normal (ha).

Several weeks went by and the day of my ultrasound had arrived.  Before I left for my ultrasound, I sat in my prayer closet to pray for me, our baby and my doctor.  Strangely, I prayed, “Please give me courage.”

I’ll be honest, sometimes I hate my prayer closet.  Sometimes it freaks me out. I didn’t quite know at that moment, but I drove all the way to the doctor’s thinking, “Why would I need courage?”

The scriptures tell us the Holy Spirit prays on our behalf.  Romans 8:26

It’s always fun to walk into my OBGYN’s office.   I’ve been friends with this staff for 10 years.  It’s almost like Norm walking into the Cheers bar (but not).  I was excited to see everyone and excited to boast of our new baby.  But back in the exam room as I talked with my doctor I couldn’t quite shake my dark thoughts.  We settled in to see the ultrasound monitor and I was the first to say it out loud.

“There’s no heartbeat.”

Silence.

The doctor scrambled and pushed some buttons.  He turned on the sound waves at the bottom of the screen.

“There’s no sound waves.  Are there any sound waves?”

Would someone please say something?

He confirmed, “No, I am so sorry, there aren’t any sound waves.”

The three of us just sat there, the doctor, the nurse and I, staring at my still little baby.  It felt like an eternity of silence.  He was so peaceful, but not in a good way.  I started crying.  Crying and crying and crying.

I am so grateful for all that God has given me.  I love my husband, I love our kids, I love our home.  It’s not that I need anything or anyone more.  It’s just that at this point in life I can’t bring myself to say, “No thank you.”

I lost a baby that week.  We lost a baby that week.

Scott and I continue to trust the Lord with our health, our minds, our family and our finances.  We will wait and see what His will is for our future.  Until then, there’s plenty around here to keep us busy.

Matthew 18

 5And whoever welcomes one such child in my name welcomes me.

Hills and Valleys by Tauren Wells

 

John

July 19, 2017

Have you ever sat praying with your child, and he or she prays for something, and you think to yourself, “Oooo, that’s not gonna happen”?

It happens occasionally at our house, but it’s usually not too big of a deal.  Theo has prayed for a German Shepherd a million times, and I’ll just say, “Oh bud, there’s really no room for a German Shepherd at our house.”

Well, on this particular night, I sat driving the car while Theo prayed from the back seat.  As I listened to his prayer request, I thought, “Oh Lord, can you please make that happen for him?”  Let me rewind.

Friday July 7th was a scheduled chemo day.  Leading up to Friday, Theo had consistently complained of a headache, every day, several times a day.  Theo never complains.  Goodness, he was bowling the day he was diagnosed with Leukemia in first place.  So after six consecutive days of complaining all day of a headache, and with no signs of sickness in our house in any of the others, I, along with my business management degree, concluded that Theo had a brain tumor.  They have always said that the instance of brain cancer in boys with Leukemia is significantly higher than girls.  So much so, that they treat boys with Leukemia an entire year longer than girls with Leukemia.  I was worried.

With my parents in charge at our house and Scott off from school for the day, the three of us drove to Theo’s chemo appointment.  Scott and I had prayed fervently the night before that our doctor would take our concern to heart and help us figure out what was causing Theo’s headaches.  I love our team at CHOP and they did indeed take us seriously, from the intake nurse all the way up to the head oncologist.  Theo’s counts were sky high and he passed a neurological exam, so that was encouraging.  They also explained to us that a brain tumor was not a concern, (oops), but instead the concern would be Leukemia in Theo’s brain.  The only way to know that for sure would be a spinal tap, and they were open to scheduling a spinal tap ahead of time if the headaches continued.  We were to wait out the weekend and call on Monday if he still had a headache.  Scott and I felt satisfied with their conclusion and were content waiting through the weekend to see if Theo felt any better.  And it was nice to know that my tumor theory was a little off track.

Chemo went smoothly, we headed back home, and Theo and I fell asleep on the couch.  Theo woke up around 3pm with a temperature of 102.7.  We knew that meant he had to be hospitalized within an hour in case of an infection.  We knew we couldn’t make it to the city in under an hour, so we agreed that I would take Theo to our local hospital. I even called CHOP to tell them what was going on, and they said to go and have the local ER call them for instructions.

Now before I go on, we love our local hospital.  I have given birth there many times and my father had heart surgery there just a few years ago.  They are wonderful people and brilliant professionals.  However, I can now honestly say, it is not a cancer hospital.

Theo and I enter into the ER.  They asked me if anything weird was going on, and I replied Theo had chemo earlier that morning and he’d been having headaches all week, but our CHOP team was aware of that.  That’s when things went downhill.  First we were sent for a cat scan.  Then we found ourselves waiting in the hallway for a chest x-ray.  I called Scott and whispered into my phone, “I think we’re on the wrong track here.  I don’t know what to do.  He needs a blood culture and antibiotics immediately.  They haven’t even accessed his port.  What should I do?”  It was a tough spot, because I had just been reminded in the morning that my business management degree didn’t help much in the cancer world, and yet the downtown nurse had prepped me with what I should expect from the ER and this wasn’t it.  I was racking my brain; Do I humble myself?  Do I speak up?  Can someone please help our son?

Once we returned to our triage room our nurse explained that they couldn’t access Theo’s port.  They didn’t even have a port kit in the building.  They wanted to do two arm sticks, but they couldn’t answer how they would take a blood culture from his port line.  Theo started crying.  The nurse left the room.  I whispered to Theo, “I’m going to get you out of here buddy, I’ll take you to CHOP.”  With my best combination of humility and assertion I said to the doctor, “I’d like to leave and I’d like to take him to CHOP.”  It actually worked.  They called CHOP, they cleared us to travel, and we left.

It was now 6:45pm.  It had been four hours since we discovered Theo’s fever.  There was no gas in the car, neither of us had had dinner, my cell was on low battery, we still didn’t know why Theo had such a high fever, and I was discouraged.  So, I put my big girl pants on, I filled the gas tank, got us milkshakes at McDonalds, bought a phone charger from Staples, and headed down Route 3.  At the very least, it was a beautiful summer night.

I turned to Theo in the back seat and I said, “Let’s pray buddy.”

He prayed, “Dear God, please help me to get a boy nurse to do my port.  Amen.”

Ooo.  A boy?  Nurse? In the ER?  Who has experience with ports?  “Amen,” I choked.

I can’t even type this without tearing up, honestly.  It was now 8pm, we were in our triage room of CHOP’s downtown ER, we’re the only people there, and this young, healthy man bounced into our room.  He pulled down his shirt collar exposing a scar and said, “Hey buddy, guess what this is?  It’s my scar, from my port.”

I will never forget that moment.  John was indeed a boy, a nurse, and a cancer survivor who boasted he used to access his own port.

Needless to say, our night went really well from that point on.  It was so well worth the grief of the previous five hours.  John took great care of Theo.  Oh, and, John found 3 bull eyes on Theo’s back.  Remember the headaches?  Theo tested positive for Lymes.  A small bump in the road, but so much better than a brain tumor.

It’s those speechless moments that carry us along the long roads in life.  May the Lord grant you your own speechless moments and the strength to keep on going in between.

And, if you think of him, will you please pray that Theo heals from Lymes?

Matthew 18

18 At that time the disciples came to Jesus and asked, “Who, then, is the greatest in the kingdom of heaven?”

He called a little child to him, and placed the child among them. And he said: “Truly I tell you, unless you change and become like little children, you will never enter the kingdom of heaven. Therefore, whoever takes the lowly position of this child is the greatest in the kingdom of heaven.

January

Thursday February 16, 2017

January always turns out to be a busy month, and this year was no exception.

Tai, Tray and Theo played flag football for 8 weeks

theoplays

Amaya turned 13

amayatim

Theo had a good check up and chemo visit

chopselfie

And he turned 6 the next day.

theocandle2

Theo almost managed to avoid the season sickness, with one late night exception.  It was ten o’clock on a Monday night and we found ourselves racing down the Schuylkill towards CHOP due to a fever of 101.

Even in that moment we had such a peace and a huge sense of gratitude that Theo hadn’t been admitted since 2015, Praise God.  They treated him with antibiotics and fluids and we were discharged at 3am, tired but grateful he didn’t need to be admitted.  Truly God has made our ‘ boundary lines fall in pleasant places.’

Tomorrow is a spinal tap for Theo.  He’ll stop eating and drinking at bedtime and we’ll leave the house bright and early to get the day started.  I was trying to plan ahead and count how many spinal taps he has left, I believe it’s 5 including tomorrow.  I have lost count of how many he has already completed.

We covet your prayers for safety and healing as Theo goes under sedation.  He’ll receive chemo in his spinal fluid and via IV through his port.  He’ll have a bag full of Wawa goodies waiting for him when he wakes up and we’ll come home and rest up over the weekend.

Many blessings to you and Happy Valentine’s Day

Psalm 16

Keep me safe, my God,
for in you I take refuge.

I say to the Lord, “You are my Lord;
apart from you I have no good thing.”
I say of the holy people who are in the land,
“They are the noble ones in whom is all my delight.”
Those who run after other gods will suffer more and more.
I will not pour out libations of blood to such gods
or take up their names on my lips.

Lord, you alone are my portion and my cup;
you make 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 keep my eyes always on the Lord.
With him at my right hand, I will not be shaken.

Therefore my heart is glad and my tongue rejoices;
my body also will rest secure,
10 because you will not abandon me to the realm of the dead,
nor will you let your faithful[b] one see decay.
11 You make known to me the path of life;
you will fill me with joy in your presence,
with eternal pleasures at your right hand.

 

Merry Christmas

Saturday, December 24, 2016

Theo’s spinal tap went well last month, as always thank you for praying for him.

Yesterday was another chemo day and we were pleasantly surprised that Theo’s ANC was over 2,000.  The rest of us had just drudged through 12 days of the stomach flu but Theo seemed completely unaffected and remained healthy.  His sky high numbers confirmed that he’s going strong.  Praise God.

It was Cali’s turn to visit CHOP with us and she was a sweetheart.  The nurses are used to Theo being shy and quiet, so chatty Cali was a change of pace.  She wore her mask like a champ, she made Theo laugh, and she asked sincere questions as the nurse hooked up the IV.  It made for a special afternoon.

Today was our first fever-free illness-free day so we all got dressed for the Christmas Eve service.  I like our kids to look nice for church, it’s a special place after all.  They know the drill, so Theo was sizing up four button down shirts that he had spread out on his floor.  I agreed with his final choice, but I said to him, “Maybe we should change the color of your t-shirt?”  With the most sincere authority and maturity he replied, “Mom, I really think this one is fine.  The church doesn’t care.”  Too cute.

I had to hold back my tears as we all crowded in the back of the church singing Christmas hymns.  What more could I ask for then for the eleven of us to be together and healthy in the house of our Lord on Christmas Eve?  It is well with my soul.

christmaseve

We wish you a wonderful week of celebrating the Baby Jesus.  May nothing on Earth dampen your spirit.

Isaiah 9:6

For to us a child is born,
to us a son is given,
and the government will be on his shoulders.
And he will be called
Wonderful Counselor, Mighty God,
Everlasting Father, Prince of Peace.