Tuesday, March 26, 2013

Long Clinic Day and Just Two Sleeps 'til Thursday

I remember when Rourke was a tiny baby, and I was holding him, thinking that I would always remember the details of those moments. The way he felt in my arms, the click of his mouth as it closed after a sweet baby yawn, his breathing. While I can report on those things, I don't actually remember them in the ways I thought I would.

As Esther's hair went away, the same thing happened. When I looked at her sweet bald head, I couldn't really remember what she looked like with hair. All my mind could muster was imagery from photos. This has happened yet again...as Esther's hair is growing back, I can't remember her without it.

I find myself wanting to remember, wanting to remember the details of what Esther was like before cancer. I had hoped when her hair began to come back I would remember, but I still can't. I've realized this longing isn't just a desire for a memory, but a want that none of this had happened. In the same breath, I am incredibly thankful for many of the ways cancer has changed our lives. God has used this for the good of our hearts.
Today we spent most of the day in the clinic. It felt uncomfortable. Maybe because I haven't done the hospital scene since Esther finished radiation. Anthony spent the last stay with her and then went to her follow up appointments. I'm out of the routine. Also because this part is scary.
When first learning about this phase of her treatment we had the impression that this was supposed to be the easy part. For many kids it is, but our sweet little girl struggled, a lot. I was never afraid of chemo or even transplant. While both brought periods of intensity, Esther was able to endure. She has a high pain tolerance, rarely complaining, but her first antibody treatment brought pain and struggle that she just couldn't handle. Knowing that this is going to cause her pain, make breathing difficult, give her nausea that might not be stayed by the arsenal of anti-nausea meds and then asking her to trust me, to bring her into the hospital and agree to hook her up, brings me back to those first days when her eyes were so confused, wondering why we were allowing this pain to come.
Esther's pain is not like the pain of Christ, but as I've thought about the coming Easter weekend, about Jesus praying in the garden, sweating, just wanting his friends to stay awake and understand, to pray for him, begging the Father to remove the burden of the cross, I feel this way. I see Esther wondering why it has to be this way, and I wonder how painful it was for the Father to lead His son to the cross.
Christ had to die. He had to defeat death to save our lives. The law was not enough, when God is perfect, Holy, I can't be good enough. Esther's treatment is not enough without these last painful months. Through his death and resurrection, Jesus did away with the impassible valleys separating us from intimate relationship with a God who loves, who hears, who holds my hand, draws me to His throne of grace to find mercy and help, who holds my tears in His bottle.
For the next four days Esther will be getting a continuous dose of a protein called IL2. It is in the same family as the meds she's received to help her body recover after chemo or to produce stem cells, but this is the godfather of the family, much stronger than anything she's had before. This will cause her body to produce those cancer fighting cells and amplify the training they will receive during her Pediatric ICU stay next week.
However, it's really just the warm up lap. Monday, April 1st, we will check directly into the PICU because that's when the neuroblastoma killing bootcamp actually begins. She will receive a higher dose of IL2 along with the chimeric acid that will work together to teach her immune system to see and attack neuroblastoma. It is in the PICU because the side effects are even more intense than last time. She will hopefully be discharged on Friday afternoon after her respiratory issues are resolved.
Maybe it's just the compounded weariness of the previous months of treatment, or the possibility of relapse, or the taste of life at home, but my feet are heavy. I don't want to do this. Today Esther's face went from fear to relief when I told her we only had a clinic visit. I felt like I was lying to her because I didn't make it clear that next week she'll have to stay again.
Please pray for her to endure, for her to not be in so much pain, for her nausea to be controlled, and for her breathing to be stable. Please pray this bootcamp will equip her body to fight any future cancer cells and that relapse will never come. Please pray for God's hand on her healing. She has responded so well, but it is no guarantee. Please pray for me to be unselfish and that God would make me strong to comfort her. Pray I would be an encouragement to the doctors and nurses. Pray I would come to the throne, I still have to make the choice.
I wasn't anticipating such a weighty post. This blog is both a means to share updates on what is going on, but also a place for me to process. I guess I needed to process. But....there is still business to attend to. That would be a clue for Thursday's exciting announcement.
I'm quite spellbound by this sweet little tune....


P.S. We had a really great guess, wondering if Esther would be starting her Make A Wish. That is such a great guess, but it's still several months off. The wish needs to be completed within 9 months of the beginning process, so we need to wait until she's healthy enough to actually make her wish. GREAT guess!



  1. This post gave me great strength in a world that guarantees pain and struggle. He endured so we could endure with His help. We continue to pray for your beautiful family. Our hope is in the Lord. The Howard Family in Ladera Ranch, CA.

  2. Oh sweet mama, know I keep praying for your family. The burden of caring for a child with cancer is so very heavy at times. Sharing your burden with others so we can pray is so important. Thank you for sharing your heart. I can really relate to using a blog not only to document, but to process what is going on. Your dear Esther singing is so precious and I love her sweet hair that is growing back. Can't wait to see what the big reveal is!

  3. Oh dear sweet Sam,

    You have such a wonderful spirit. You so richly bless God with your words and your heart. Thank you for letting us know of the specific prayer requests. Your daughter is such a sweet, beautiful creation and it blesses me to hear her little, kind voice. We will pray mightily for an incredibly successful time with her coming treatment. Your perseverance in this race set before you is outstanding - keep on keeping on!

  4. I feel your weariness. :( It did sound like the hard stuff was hopefully behind you. Hugs. Grace for today and bright hope for tomorrow! ~Elizabeth

  5. Thank you for sharing your inspiring experience with us. I have experience the same situation when my daughter was confine at the hospital for 1 week. It's hard but we need to sacrifice every single things for our children.

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