Day 49

April 22, 2015

Today was Theo’s fifth blood transfusion and fourth platelet transfusion. He has now had 4 transfusions in 10 days.

We are thankful for many things. Theo has not had any allergic reactions. Theo has only spent 3 days in the hospital so far this month. Scott has only missed 3 days of work so far this month. Theo and I have been home in time for dinner every night. We receive dinners from our church several times a week. Our friends have been so faithful and available to take care of Tim and Cali. Grandmom shows up cheerfully morning after morning and doesn’t even blink when I tell her I’m headed back to CHOP. My parents drop everything to fill in any unexpected gap. We are grateful.

We also see why the staff took such time to prepare us for Phase 4. We are constantly on alert. I run 911 scenarios through my mind every morning and every night. We count the bruises on Theo’s body to try to determine which ones are new and which ones are old, which ones are from playing and which ones are spontaneous. We now know what petechia looks like. Petechia is red and purple bleeding spots under the skin caused by a low platelet count. Theo has petechia all over his chest and neck. We also know that when Theo starts crawling on the floor to get around that his red blood cells are getting too low. It’s intense.

I told Scott the other day I feel like we are Moses and you all are like Aaron and Hur. Moses was leading the Israelites in a battle against the Amalekites. Previously in Exodus God had given Moses a staff to carry as a physical reminder that God was with His people. God also used the staff as the vessel for miracles from Moses to the people. I can’t do the passage justice, here it is…

So Joshua fought the Amalekites as Moses had ordered, and Moses, Aaron and Hur went to the top of the hill. As long as Moses held up his hands, the Israelites were winning, but whenever he lowered his hands, the Amalekites were winning. When Moses’ hands grew tired, they took a stone and put it under him and he sat on it. Aaron and Hur held his hands up—one on one side, one on the other—so that his hands remained steady till sunset. So Joshua overcame the Amalekite army with the sword.

At this point Scott and I feel like we are the ones sitting on a stone and you all are holding our arms up so that we can defeat our present enemy. We are grateful for your prayers and we are hopeful that this battle is almost won.

Exodus 17:8-13

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Day 39

April 13, 2015

Today was Theo’s fourth blood transfusion. They had warned us that his hemoglobin was low on Friday, so we were very thankful to get through the weekend without any emergencies. They say if an adult’s hemoglobin was as low as Theo’s, that adult would not be able to stand up. This boggles my mind because Theo spent most of the day Saturday running around on the soccer field. It’s a real testament to his God-given strength, his endurance and his purpose here on Earth. It is also a real testament to how much you all are praying for him.

I was relieved to be back at CHOP safely on Monday morning. We could tell by Sunday night that he was fading, slow and lethargic. After about 90 minutes on the IV, Theo really came back to life. It’s amazing what oxygenated blood can do for you.

I always have mixed feelings watching someone else’s blood drip through the IV line. On one hand the new blood is saving Theo’s life. On the other hand, it is hard for me to forget the old stigmas of blood transfusions. I spent the morning in prayer over him, knowing this was our only choice. Once Theo jumped out of his laz-y-boy renewed with energy, my heart was filled with peace.  We celebrated with a McDonalds lunch and a stop at the playground.

Today was also Theo’s last home injection of chemo. It was really neat to work on this with Scott. We did something totally out of our comfort zone, we did it out of love for our son and we did it together. Moments like that are little blessings in the middle of our battle with cancer.

Theo’s platelets are now low so he is scheduled for a platelet transfusion on Friday morning. Friday will be his first day in Phase 4 without chemo. This means his body could turn around soon and enter recovery. I can’t believe we are 39 days into Phase 4. Only 17 more days to go.

Thank you for praying for Theo. We couldn’t do this without you.

Romans 8:28
And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

The Story of Jesus

Back on that first night at CHOP, it was 1 am and Theo and I sat alone in a triage room of CHOP’s ER. Our pediatrician had told us on the phone that based on his bloodwork results, Theo was very sick with some form of Leukemia. Our ER nurse had just prepared Theo’s IV for a blood transfusion, and I was told a doctor from Oncology was on his way to meet me.

All I could think of in that moment was, “If Theo died tonight, would he go to Heaven?”

In the Bible there’s a story about King David. He loses his newborn baby, and he tells his attendants that he is confident he will be with his baby in heaven one day. Some people draw comfort from this passage. They believe that young babies will go to heaven based on their parent’s faith as expressed by David. Scott and I have lost three babies over our 15 year marriage, and we find ourselves amongst this group of people. This passage brings us comfort.

But as Theo and I sat in the ER I was thinking to myself, Theo isn’t an unborn child. He isn’t a newborn child. He is 3 ½. Where was the Bible story about the 3 ½ year old?

I looked at Theo and quietly asked, “Theo, do you believe in Jesus? Can I tell you a story about Jesus?”

Of course Theo had heard the story of Jesus in our home. Years ago I was the Campus Crusade college kid walking along the beach handing out tracks about the canyon of sin that lay between man and God. I was now the homeschool mom who hand selected bible verses for her family to memorize, married to a man who has served the local church for 15 years. Had we laid a strong enough foundation of faith for Theo?

At the end of my story I asked Theo to pray with me. I gave him some phrases to copy out loud, I helped him confess his sins, I helped him declare that He believed in Jesus and I helped him express his desire to love Jesus with all of his heart.

Was I theologically correct? Was my son now a “Christian” where he wasn’t before? Did my young son have a faith somewhere before this night in the ER, and as an Earthly mother I was just creating my own formalities? I don’t know.

I only share this story to say that it is never a bad time to tell the story of Jesus. In fact, it’s a story we need to share more often than we do. It’s a story that needs to stop what we’re doing and take precedence over any other topic. It’s a story that needs to be introduced to the young and repeated for the old. It’s a story that needs no fillers, no buffers, no bunnies. It’s our life story…

God created the world. He created man and woman in His likeness. He created man with a free will, the ability to make his own choices. Man sinned, and since then every man has sinned. Sin separates man from the one and only perfect God. God sent his son Jesus to Earth as a baby. The people were expecting a king, they got a servant, fully God yet fully man. After thirty-three years on Earth, Jesus was crucified on a cross in between two thieves. After three days in the grave, He rose again. Jesus conquered death. How does this affect you and me? We have sinned and our sin requires the death penalty. We can pay that penalty ourselves by spending eternity separated from God. Or we can accept Jesus’ payment and spend eternity with Him. His forgiveness and salvation lie available to all.

As you celebrate Easter this weekend, I hope you get the chance to share the Story of Jesus.

Happy Easter

2 Samuel 12 – The story of David’s infant son

Luke 23 & 24 – The crucifixion and resurrection of Jesus

Luke 24:50–53
“When he had led them out to the vicinity of Bethany, he lifted up his hands and blessed them. While he was blessing them, he left them and was taken up into heaven. Then they worshiped him and returned to Jerusalem with great joy. And they stayed continually at the temple, praising God.”

Day 29

April 4, 2015

The doctor gave Theo one week of rest after being discharged from the hospital last Friday. By the end of his rest Theo’s counts were much higher and his energy level was almost normal. It was nice to have him feeling good while Scott was home for spring break.

Yesterday was then considered Day 29 of Phase 4. Theo received a total of four medicines, three of which are brand new to his system. He started off the day with a spinal tap to receive MTX directly into his spinal fluid. He then received an hour-long IV medicine called CPM. CPM is known for irritating the bladder so it requires 5 additional hours of IV fluids. Theo also started a new injectable chemo called Cytarabine. I had been dreading medicine in particular because it’s just hard to tell a four year old that he needs another “pinch.” This injection needs to be given daily so we now have a home nurse coming to our house on weekends. Ideally Scott or I would give this to him ourselves, but today’s session was a bit rocky. The nurse assured us she would approve us for another day of home care. The last medicine is called 6TG and it is a pill to be taken at bedtime.

April is the month we have been waiting for. It is this combination of medicines that will take the greatest toll on Theo. As I understand it, we would ask that you pray for his liver during this time. The doctors will be looking for signs of liver distress which would then require hospitalization. They will also closely monitor his hemoglobin and platelets and give him transfusions as needed. And as always, we’ll be on the lookout for fevers as a sign of possible infection.

Here we go…

Zechariah 4:6
So he said to me, “This is the word of the LORD to Zerubbabel: ‘Not by might nor by power, but by my Spirit,’ says the LORD Almighty.