Wednesday, December 12, 2012

When It Hits, It Hits Like a Ton of Bricks (BMT Day 1)

Esther and I had a fun day today as we started to get into a routine. With the intensity and type of chemo she is getting, mouth care is hugely important. Three times a day we need to follow a 4 step process that takes over an hour each time between brushing teeth, the different mouth rinses, and the waiting between each rinse without any food or drink in between. It's actually not that bad and Esther is a champ as swishing the rinses in her mouth. Bathing daily is also a big deal to keep the bacteria at a manageable level on her body. Before 9am, we had gone through the mouth care routine, bathed, eaten breakfast, and she even got be unhooked from the IV for a little bit to play as well.

Then, at 9am, the chemo began that will continue for 4 days straight (continuously). We watched "Tangled" while they had to check her blood pressure every 20 minutes (standard procedure) and she destroyed her lunch of dinosaur nuggets and carrots. In the afternoon, she started to tire as she painted and decorated a star with Mrs Pat (the art therapist, a sweet lady probably in her 50s/60s) and watched some Tinker Bell on Netflix.

Later in the afternoon, we started putting together her legos that a few policemen gave her when stopping by today (there was a large contingent of law enforcement delivering gifts to every child in the hospital!). But by around 6pm, she couldn't keep her head up and was starting to fall asleep in her chair. The nausea was setting in and she wanted nothing to do with her dinner. She then napped until 7 when I had to wake her up for her final mouth wash routine of the day. During the second rinse, she threw up for the first time. She was just cooked.

This is only going to ramp up from here even as we help her with additional anti-nausea meds. It's an insane amount of chemo getting pumped into her right now. For example, in previous rounds, she received a drug called Etoposide. It can affect the blood pressure but she's never had any issues before. In a normal chemo round for her, she would receive about an hour a day of Etoposide for 4 straight days. That's a total of 4 hours spread over 4 days. She's already received it today for the past 11 hours straight.

I do like the BMT unit though. Less traffic, much more peaceful, and very experienced nurses. It is really it's own separate unit separated from the main oncology unit. Also, there's no hedging here. When you talk to the nurses and doctors, it's not a question of whether she will get sick but when and how bad. It's not a question of counts dropping and if she'll need inpatient care like a normal chemo round. I appreciate it because it's all a matter of fact to them and spoken of without despair.

It puzzled me a bit though when I ran into a nurse on the main unit that has been with us before. She asked what we were here for this time and I told her that it was for transplant. She then practically congratulated us and seemed excited for us!

I had to mull that over the rest of the day. I didn't figure it out until tonight. Just to get to this phase is a big deal that is taken for granted. Kids with harsher leukemias have to show a significant enough response to chemo to be able to get to transplant. Getting to transplant for most patients means you've found a matching donor as well. It's a culmination of the harsher part of treatment and single handedly increases the chance of survival (avoiding relapse) by nearly half. That's a big deal. That's why this other nurse was likely excited for us. The next month could be hell but, ironically, Esther's system has to be pushed to the brink to give her the best chance at a healthy life.

Truly, truly, I say to you, unless a grain of wheat falls into the earth and dies, it remains alone; but if it dies, it bears much fruit. Whoever loves his life loses it, and whoever hates his life in this world will keep it for eternal life.

Esther will come out of this but not unscathed. We pray the side effects are the minimum and her recovery is quick but it will wreck her system. Her immune system won't fully recover for 6-12 months. She'll probably need all of her immune shots again. But through this form of death, she can have hope.

Death in all its forms is not fun. Be it those times when you feel like you're unraveling and God hit a reset button on your life or you're feeling the consequences of a particular sin you stumbled into. Maybe your marriage is hurting. Maybe you're dealing with actual loss.

But death in all its forms is not in control. It never has the upper hand. Because of Jesus' death on the cross, God wields death like a tool for our good. To cause us to seek him. To help us see him more clearly. To help us know this life isn't what it was meant to be. To remind us that we are frail and need him. God uses death in all its crud. One day, if we would but yield to him, he will use it to finally bring us home to him once and for all.

"Death is swallowed up in victory."

"O death, where is your victory?

O death, where is your sting?"

The sting of death is sin, and the power of sin is the law. But thanks be to God, who gives us the victory through our Lord Jesus Christ. (1 Corinthians 15:54b-56)

Pray for Esther's endurance and recovery! Pray for us to put our hope in the One who wields death for good as we watch and help Esther in her sickness and hurting!



  1. You don't know us (but there is a whole congregation praying for your family here in Italy) each post i read touches me deeply. Your strength is inspiring and your endurance is that of what Acts 20:24 speaks of. May God bring hope and blessing to all of your days. Thank you for keeping the world informed so we can continue to seek Him on your behalf!

  2. I was brought to tears that you would apply your insight to other areas in life. The fact that you can see outside the trial you are in just amazes me. Praying for your family and Esther!