Dear Brothers and Sisters

Friday May 15, 2015

Spinal taps never get easier. There are some things that have gotten easier: holding Theo down while they access his port, sitting in a room at CHOP for 6 hours with little to do, saying goodbye to the other 7 kids as we drive to CHOP (AGAIN), texting Scott as many details as I can because he can’t be there because he needs to go to work, remembering to give Theo the right amount of the right medicine on the right day of the week. However, spinal taps do not get easier.

It’s hard to watch them inject sleepy medicine into Theo’s IV, it’s hard to watch his eyes flutter backwards and struggle to focus, it’s hard to watch the nurse restrain him in case the sleepy medicine doesn’t work, it’s hard to sit in silence as the doctor focuses. I cry every time.

Unlike the other days, today I had the courage to stand up and walk around the table to watch the doctor. It was amazing, her skill in action on my son: her steady hand and perfect aim as she inserted the shunt into his lower back, the clear liquid gold dripping down the shunt into the test tube, the neon colored chemo being injected back into the shunt, the flimsy band aid that held it all together once she was done.

This week has me thinking about how we treat each other as women. At CHOP I am surrounded by superhero women all doing what they do best. Sometimes people will call me a superwoman when they see me in public with 8 kids, all wearing clean clothes, with brushed hair, shoes tied, standing patiently for me to finish talking. They express how inadequate they feel compared to me, normally in the form of a joke. I also meet people who look at me with a darker look in their eye. I can tell they are really thinking that I’m just a walking uterus with no brain, no life goals and no social life.

I wanted to write this week a reminder, maybe for me, maybe for you. It is the Holy Spirit’s job to convict people, to prompt people, to lead them into their sweet spot in life, to inspire them to take one more step toward Godliness. It is not our job as “friends” to tell someone her skirt is too short, that she is 20 pounds overweight, that she should stay home more, that she should get out more, that she should have more children, or that she shouldn’t have had the children she has.

Instead it is our job to love, to laugh, to admonish, to encourage and to be ready to share how the Holy Spirit is working in our own lives.

I promise that if I spend any brain power on you, I will use my brain power to pray that you will walk closer with the Lord and listen carefully to His Holy Spirit. And I would ask you, that if you choose to spend any brain power on me, you would pray that I would walk closer with Him and listen carefully to His Spirit too.

And so begins Phase 5. Fifty-six days long, incrementally increasing doses of Methotrexate and Vincristine every 10 days, with another spinal tap on Day 30.

1 Corinthians 1:10
I appeal to you, dear brothers and sisters, by the authority of our Lord Jesus Christ, to live in harmony with each other. Let there be no divisions in the church. Rather, be of one mind, united in thought and purpose.


A Great Report


May 10, 2015

Friday’s appointment went really well for Theo. His platelets were through the roof. To give you some perspective, on Friday, April 17th his platelets were 9. On Friday, May 8th they were 347,000. Amazing.

Theo’s hemoglobin was 9.8 up from 8.0. This means that he is now producing his own red blood cells. Amazing.

(By the way, the next time I am tempted to complain, I will at least be thankful that my body is making its own platelets and red blood cells. Duh.)

Theo’s ANC was 589. They say when your ANC is under 500 you should not be out in public. We have really minded that rule and Theo hasn’t been out in public much since October. Because his ANC was just over that threshold, we decided to go out to dinner Saturday night. We also went to church as a family today for Mother’s Day. It was really nice to be out together again.

In order to start Phase 5 Theo’s ANC needs to be 750 or higher. For that reason Theo has not started Phase 5 and he will get a third week of rest.

This was really the best of both worlds for us. We are elated that Theo’s body is back in full production mode and we are thankful he gets another week off from chemo.

We are hopeful that this Friday Theo’s numbers will all be high enough to start Phase 5. This will be Theo’s last active phase of chemo.

Happy Mother’s Day

Zephaniah 3:17
For the LORD your God is living among you.
He is a mighty savior.
He will take delight in you with gladness.
With his love, he will calm all your fears.
He will rejoice over you with joyful songs.”

Battling Ba-kemia

May 1, 2015

“Wait, who has Ba-kemia?”
“You do, Bud, remember?”
“Oh yeah, right. I do.”

Phase 4 is now over. He did it. We did it. HE did it.

Today Theo’s counts were not high enough to begin Phase 5. His platelets have gone up this past week which means he’s making platelets on his own now. Praise God.

Theo’s hemoglobin dropped 3 points this week from an 11 to an 8. (It was only an 11 because of his transfusion two days prior.) Our doctor explained that now is the time for Theo’s body to kick in and start producing red blood cells on its own. She has no doubt that this will happen, it just isn’t happening yet.

This will be a week of rest of Theo. We will return next Friday for another check-up. And if he starts crawling up the stairs again before Friday, we’ll know his 8 dropped even lower.

There are moments when we feel just the tiniest bit excited inside, as it slowly sinks in that just maybe we all survived Phase 4. There are also moments of doubt and fear, when we wonder if there are any surprises around the corner, or if this is too good to be true. Our uncertainty is a great reminder that we rely wholly on the Lord day to day whether we realize it or not.

Thanks for reading along with us.

Happy Friday

Proverbs 3:5&6
Trust in the LORD with all your heart,
and do not lean on your own understanding.
In all your ways acknowledge him,
and he will make straight your paths.