Happy Birthday Theo!

January 23, 2015

Theo’s counts were really strong today, including an ANC of 1746. The doctor explained they would only give him 80% of the heavy medicine so they wouldn’t knock him down as far this time around.

It was Lucia’s turn to come with us. We’ve tried to bring an older kid along at least once so they understand Theo’s new world. Lucia’s middle name is Joy and today she really lived up to her name. She had Theo talking and laughing and she even convinced him to do a craft at the table. It was a very sweet day.

On Wednesday we celebrated Theo’s 4th birthday. We enjoyed tacos, chocolate cake and presents. It was simple, special and thankfully normal.

In 10 days we will return for a spinal tap and two chemos. Spinal tap days are harder on Theo, but as a mom it is always nice to hear that his spinal fluid is cancer-free. That’s our prayer for Theo once again.

Thank you for your friendship and prayers. Stay safe this week!

Isaiah 55:9-11
“As the heavens are higher than the earth,
so are my ways higher than your ways
and my thoughts than your thoughts.
As the rain and the snow
come down from heaven,
and do not return to it
without watering the earth
and making it bud and flourish,
so that it yields seed for the sower and bread for the eater,
so is my word that goes out from my mouth:
It will not return to me empty,
but will accomplish what I desire
and achieve the purpose for which I sent it.”

Advertisements

Theodore … and Timothy

January 19, 2015

Theo’s appointment on Friday went well. His ANC was only up to 390 so they decided to give him the light chemo and they cancelled the dose of heavy chemo. This will get us back on track for Phase 3. Friday was day 14 out of 56. Next Friday we will return for both chemos assuming his ANC reaches 500.

I have been meaning to update you on Theo, but to be honest we have been really worried about Timothy. Tim is 15 months younger than Theo. He’s fair and blonde and a fairly skinny guy. Lately Tim hasn’t been feeling well. He had the flu over Christmas and a mysterious rash over New Year’s, and he just hasn’t bounced back. To add to our concern, every time I go to CHOP with Theo, our friends and family tell me Tim won’t eat for them.

Friday was the final straw. Scott and I found a lump on Tim’s neck. Our hearts sank. I called and the next available appointment with our pediatrician was Monday morning. All weekend long Scott and I would look at Tim and then look at each other. What were the odds?

This was the longest holiday weekend ever, and not for good reasons. I was praying the pediatric staff wouldn’t laugh out loud at me, but I was also genuinely praying that Tim didn’t have cancer. Our pediatrician was sincere and concerned. He also helped to point out some differences between Tim’s exam and Theo’s exam. He then sent us to the hospital for blood work. I don’t know much, but I really needed to know that Tim’s numbers were normal.

I don’t remember everything the doctor said over the phone this afternoon, but I know I heard the words “normal” and “perfect” a few times. I hung up and cried. It’s been such a long three months. In my mind I was meeting with the CHOP doctors all over again to discuss Tim’s treatment plan. It turns out he just needs a little extra TLC.

I guess to us a skinny kid will never just be a skinny kid, and a swollen gland will never again just be a swollen gland.

The next time you are feeling under the weather, you may not want to mention it to me. I might tell you that you have leukemia.

1 Peter 5:6,7,10
Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you … And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. To him be the power for ever and ever. Amen.

220

January 12, 2015

Well, 220 is better than 50, but not quite 500. We’ll let you know how Friday’s counts look.

Romans 8:28
And we know that all things work together for good to those who love God, to those who are the called according to His purpose.

Romans 11:36
For of Him and through Him and to Him are all things, to Him be glory forever. Amen.

Phase 3

January 9, 2015

Theo is now in Phase 3 of his ALL treatment. There are 5 active phases and then Phase 6 is a monthly treatment until he turns 7. Phase 3 is two chemotherapies given every 10 days for a term of 56 days. Day 1 was Friday, January 2 and he handled both medicines really well. This Monday will be his next dose.

We went in for an unexpected check-up yesterday. Theo had said a few concerning things to me, like “I can’t breathe,” so we decided to stop by and check in with the doctor. Duh. His hemoglobin and platelets looked good but his ANC was really low. The ANC is a measure of your ability to fight infection, perhaps a summary of the state of your immune system. The ANC of a healthy person is between 1,800 and 8,000. Theo’s ANC on Thursday was 50. They attributed this to him having the flu and then having chemo shortly after. He’s just wiped out.

On the bright side Theo looks good and sounds good. He is still pretty stocky with that extra weight from Induction. They warned us he might go to the other extreme and lose a lot of weight, but it hasn’t happened yet. The nausea medicine is a God-send, he needed it for 2 days after this last treatment and then he felt better. His hair is cut short already but you can tell it’s very thin. He is often running around the house with a Nerf gun in hand. He has also collected all of our dosing syringes and plays doctor on his teddy bears. It is precious.

He asked me the other day if he’s ever going to get better. Moments like that are too real. I told him I believe he will get better, it’s just going to take a long time. He now understands that he can’t go to the store, he can’t go to Tai’s basketball games and he can’t go to church. He looks forward to our CHOP days because it means we can go to the McDonalds drive thru. Lately we’ve taken him to my parent’s house to play just to give him a change of scenery.

We haven’t had one bit of trouble with his port since the day we posted about it. We know it’s because you are praying for him.

We would ask this weekend that you would pray that Theo’s ANC would rise to 500. We want his treatments to continue without interruption. If he doesn’t hit 500 on Monday they will delay the treatment and check his numbers again in 4 days.

Thank you for praying.

Malachi 4:2
But to you who fear My name the Sun of Righteousness shall arise with healing in His wings;

Thank you…Again

January 3, 2015

We wanted to say thank you for the ways you all helped to make our Christmas extra special this year. In spite of the flu, we really enjoyed the new jammies, the extra toys and the Eagles gear. Thank you for thinking of us and thank you for your kindness. We appreciate you!

Happy New Year

Ephesians 3:19

Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen

The God of Moses

January 2, 2015

Back in our younger years Scott and I were determined to adopt. I use the word “determined” because it is not an easy process, nor is it affordable by any means. We were living in a church’s manse as part of Scott’s compensation package. We had sold our first house and put the earnings in a savings account. Most people probably would have kept that money to buy a future house, and wisely so. Not us, we were going to adopt.

Soon after accepting an adoption referral, Scott started a new job at a new church and so now we really needed to buy a house. With our adoption paid for and our savings account empty, we chose a 100 year old twin in the borough. It was covered in ancient wallpaper. It had one bathtub, one non-working toilet and no shower. The kitchen consisted of a rusty metal cabinet with a sink on top. I look back and I can’t imagine what our parents were thinking, they were incredibly gracious to even step foot into our squirrel infested “home.”

Anyway, high on love and fueled by dreams of meeting our new son, Scott and I took turns every night after the girls went to bed to go to the new house and scrape the wallpaper off the walls. We had a margin of time where our old church would let us stay in the manse until our new house was ready, and we were going to need every day of their grace.

I clearly remember being there alone one night with my trusty scraper in hand. I started praying out loud for people to come help us. By faith I was thanking God for the people He would provide. In the moment I was imaging willing teenagers and maybe their merciful parents, maybe a team from the youth group who would be willing to help us on a Saturday afternoon.

About a month into our project a kind Christian business owner stopped by the house and asked me if I would give him a tour. I bounced through the house describing to him how I was going to use Rubbermaid shelving in the kitchen in place of cabinets, and how maybe if I poked a hole above the tub I could install a shower head. I can’t imagine what he was thinking either.

After amusing my construction ideas, he thoughtfully explained that he wanted to take on our house as his project, that he would have his men build a proper kitchen, a working bathroom and bedroom closets. He would even skim all of the walls to make them new and paintable again. He said his only condition was we had to stay out of their way. So much for my Rubbermaid infrastructure!

I cry every time I think of this story. I was praying for teenagers who were willing to help between bites of free pizza, and the Lord took my prayers and gave us a seasoned contractor with a big team of men and an even bigger heart.

Right after I posted Merry Christmas we all came down with the flu. Well, nine of us, to be exact. Theodore spent all of Christmas Eve at CHOP on IV fluids and medicines so he could be home with us in time for Christmas Day. Five of us caught it in time to start Tamiflu. It took us 5 days to open all of our Christmas presents in between naps. After 8 days of flu symptoms Tim came down with a head cold, but then broke out in mysterious red itchy spots on New Year’s Eve. Seriously? Today Theo spent the day at CHOP starting Phase 3 of his chemo plan.

I share that old house story because I find myself in a season where I’m trusting God will move, but I just don’t see it yet. I am praying for health for my family, but I don’t see it today. Sometimes it’s helpful to look back and remember how God provided for us in the past, to help spur us on toward the future. And sometimes I have to remind myself who I’m praying to…

I was sitting in front of the fireplace last week and the Lord brought to mind the story of Moses and the burning bush. Do you realize that the God we pray to, the God we can relate to and spend time with, He is the same God that spoke to Moses on that day? The God of the Old Testament, the Lord Jesus Christ of the New Testament, and the Holy Spirit of the Day of Pentecost, those are the three individuals who hear us when we pray? Do we really pray like we have their attention?

I will continue to pray for my family, I will pray for strong health, I will pray for Theo’s healing. I will pray like I’m praying to the God of Moses, because I am.

Exodus Chapter 3

Now Moses was tending the flock of Jethro his father-in-law, the priest of Midian, and he led the flock to the far side of the wilderness and came to Horeb, the mountain of God. There the angel of the LORD appeared to him in flames of fire from within a bush. Moses saw that though the bush was on fire it did not burn up. So Moses thought, “I will go over and see this strange sight—why the bush does not burn up.”

When the LORD saw that he had gone over to look, God called to him from within the bush, “Moses! Moses!”

And Moses said, “Here I am.”

“Do not come any closer,” God said. “Take off your sandals, for the place where you are standing is holy ground.” Then he said, “I am the God of your father, the God of Abraham, the God of Isaac and the God of Jacob.” At this, Moses hid his face, because he was afraid to look at God.

The LORD said, “I have indeed seen the misery of my people in Egypt. I have heard them crying out because of their slave drivers, and I am concerned about their suffering. So I have come down to rescue them from the hand of the Egyptians and to bring them up out of that land into a good and spacious land, a land flowing with milk and honey—the home of the Canaanites, Hittites, Amorites, Perizzites, Hivites and Jebusites. And now the cry of the Israelites has reached me, and I have seen the way the Egyptians are oppressing them. So now, go. I am sending you to Pharaoh to bring my people the Israelites out of Egypt.”

But Moses said to God, “Who am I that I should go to Pharaoh and bring the Israelites out of Egypt?”

And God said, “I will be with you.”