Tuesday, April 2, 2013

We'll try again in the morning

Thank you for praying today. The antibody therapy has been shut off for the entire day to allow Esther's blood pressure to become more stable. Her fever has also broken, so that is good. We won't start the therapy again until the morning...in part because the pharmacy that dispenses part of the treatment is closed and in part to give her body more time to recover. She's still on a little oxygen, mostly just for sleeping.

There were some neat moments throughout the day. While I stepped out for a bit this morning, Esther had a special visitor. For about three hours the only thing she said was that "Mr. Ricardo came to visit." She was in a lot of pain this morning, and the way she copes is to go very still and quiet. This was definitely a bright spot for her.

She also had a special delivery from her friend, Boden, who was up in the clinic starting some big, yucky chemo for his brain tumor. Boden has been in treatment since October, but his road is gaining some intensity right now and his parents, Ty and Stephanie, covet your prayers. His mom had spotted a fun make your own tiara activity book and thought of Esther. She was pretty tired and weak, so we only made one tiara, but she's excited to do it again tomorrow.

One of the neatest things that happened today is when she requested to paint her dolly's hair and to listen to "my songs." That is what she's calling the album our friend, Katrina Stone, just released. As she listened to the songs her body calmed and you could see on the monitor exactly where she started listening. I love music and how it ministers to our being, how it can encourage our hearts, inspire our souls, and calm a sick body. If you haven't had a chance to download the EP, go for it! It's a free download and you won't regret it.

Tomorrow we'll start the medicine again at the slowest rate allowed by the protocols and keep a very close eye on how it all goes. There are two parts of this therapy, IL2, which basically revs up her immune system (it's the godfather growth factor), and chimeric acid, that that tells her immune system what to attack. If she has a similar reaction with her blood pressure crashing we will stop the IL2 part of the therapy for this round and continue with the chimeric alone.

The protocol Esther is on lays out 5 chimeric treatments. Courses 1, 3, and 5 have the regular growth factor, courses 2 and 4 have IL2. This is course 2. If she does react again we will not do the 4th course with IL2, but it will be like the other three courses.

I don't know what to hope for...if she reacts again we will be done with IL2 and we won't have to do another ICU round. But the study has shown that this IL2 does help the immune system more thoroughly fight neuroblastoma. In any case she will still have the rest of the rounds of therapy. Relapse of this disease is a very real possibility, and the best shot for cure is the first shot.

A couple weeks ago I wrote about Justin. Would you please lift up him and his family? They have been hitting roadblocks at every turn and this latest relapse is moving quickly. All of the therapy options they have pursued so far have been held up by one problem or another, and they are in Philadelphia pursuing their final options.

As Esther has been facing her own hardship in treatment I have thought of Justin and his parents, Lori and Jeff. The fear that this therapy, a therapy that could really help Esther, may not be an option is difficult to accept. That a cure for Justin or a cure for Esther is just out of arms reach is heart wrenching and feels terribly unfair.

I keep thinking about how all of this is just stewardship of the resources God has given. He will heal her as He chooses. I would love to say that thought brings me abundant peace, but right now, my heart is clamoring for control. God knows and has given the medicine, and He will use what is needed for His plan for her life. I want a really clear direction with no scary side effects that ends in happy faces, butterflies, and world peace :). I should probably finish this blog post and kneel down at the throne of mercy to find help in this time of need. Tomorrow is a big day, and I need rest in every sense of the word.



  1. Praying <3
    We know a little boy with relapsed NB as well. Hes exploring his last option this month. :( Scary.

  2. Praying for Esther and you to have a better day today. Sending love! Blessings!

  3. You hit the nail on the head, we all just want control. It's so very hard to leave everything at the feet of Jesus and know that it's His will and not ours. I completely struggle with this regularly. I second guess so much in life and really just need to remember that "God's got this" (a saying my friend says regularly). In our church community group we watched this video from The Heart of Passion dvd series with Louie Giglio called How Great is Our God and it was so amazing. It was so encouraging to see how big the God we serve is. If you haven't watched it, I'd encourage you to watch it sometime (it's about 40 minutes long and your library may have it, ours does). I know things are underway right now and I am just praying that God's will is done in Esther's treatment. He knows what best for her and his mercy will prevail. So happy she had some bright spots in her day yesterday. Praying always.

  4. Just sitting with you, friend at the feet of Jesus, wanting the life He has to give. You are all so precious to us, i can only imagine how tender God's heart us for you. Love you and praying for you.