Saturday, September 01, 2012

Shoshana: Induction Chemotherapy

The first month of Shoshana's chemotherapy treatment is called "induction".  The goal is to 'induce' remission, such that the cancer cells are not detectible in her body.  This is not to say that the cancer will be totally gone.  A single cancer cell left in her body can and will cause a relapse.  Once remission is achieved, she will still have 2 more years of lower-level "maintenance" chemotherapy, to make sure that any remaining leukemia cells don't stage a comeback.
Playing in the waiting area at a clinic visit


There have been good days at home and bad days.  A good day is when Shoshana is comfortable enough to laugh, smile, be silly, and play with her sister; to be herself.  A bad day is when she doesn't want to move or be touched:  she simply wants to lay on the couch and watch movies.  We had been having fewer of the good days lately.

Bubbles: a good day

A friend gave Shoshana a pixie cut, to lessen the impact of chemo-related hair loss.

Last night, Elizabeth sent the following to our church prayer chain:
Tuesday marked the start of week 3 of treatment. According to the doctor the 3rd and 4th weeks are the most difficult both for the child and for the family due to pain, hair loss, crankiness (due to the steroids), and exhaustion. The most prominent issue right now is pain. She is experiencing a combination of sore throat from the constant crying combined with thrush, jaw pain from one of the chemo drugs, bone pain from the leukemia itself, and generalized muscle achiness from the combination of steroids and chemo. At this point Shoshana is taking the maximum allowable pain medicine dosage at home and if her pain continues to increase then we will have to hospitalize her for pain management. In my first few years as a nurse working on a post-op unit I learned a lot about pain: uncontrolled pain or frequent flare-ups cause a cascade of stress hormones to release inhibiting healing, and even feeding cancer. So even though I don't like how droopy her eyes are, I do not support giving her the max home dosage and allowing her to cry for two out of the four hours in between doses. Last night, for the first time since her hospitalization, she woke in the middle of the night and asked for her pain medicine.

All that to say, please pray for her pain to be controlled, for us to have patience and continued energy to serve Shoshana's needs (not necessarily her demands ;)).
A smile.
 
Reading with Grandma

This morning we decided it was too much.  Shoshana once again woke up crying in the middle of the night, and even after her morning dose should have been in full effect, she was obviously uncomfortable and in pain.  We called ahead, and headed up to Seattle Children's Hospital.  Since it's a weekend, we had to go to the emergency room.  If we could not effectively manage her pain at home, she would need to be admitted to the hospital.

We were there all day (there was a lot of waiting), and the conclusion was this:
  • Despite Shoshana still constantly indicating that her throat is her most acute source of pain, it does not look infected.  The thrush seems to have cleared up.  They took some swabs, and will run some cultures to see if there is anything else.  It may simply be irritated by her feeding tube, and aggravated by her crying.
  • She was still in pain, and the current dose was not cutting it.  We are going to try introducing another medication specifically for nerve pain, but that will take a few days to build up and kick in.  In the meantime, we will once again up her scheduled dose of oxycodone (pain meds).
It's a path forward.  Again, we appreciate prayers to the effect that Shoshana's pain will be effectively managed.
Back at the hospital

"Daddy, I want soup with noodles!"
Please also pray for Elizabeth.  This whole process has been rough on her.
  • Spiritually:  She has always had a hard time understanding why God allows this kind of thing to happen.  This incident has dredged up the old patterns of thinking and feeling.  She finds it difficult to weigh in the providential mercies that God has given to us in the midst of this crisis.  She knows they're there, but they somehow don't seem to register.
  • Emotionally and physically:  I have returned to work, except for scheduled clinic days.  Elizabeth is the one primarily taking care of Shoshana and Abigail most of the day, every day.  She has always had a hard time being strictly a stay-at-home mom.  The demands of the task have increased, and her opportunities for social, emotional, and physical outlets have decreased.  She is a strong person, but she has a tendency to power through tough times, which does not work well for the long haul.
We are thankful to be blessed by:
  • Kristen, Elizabeth's mom, who has spent almost every day taking of Abigail while we're at the clinic, or helping out in general with the girls and around the house.
  • A woman from our church, who is spending some time showing Elizabeth some healthy (and delicious!) cooking ideas.  
  • Encouragements and concern, expressed in person, on Facebook, and in the mail.
    Pumpkined out after big, long day

2 comments:

  1. Hi my name is Joanne Dunbar, I live in Redwood City CA, Peggy Anderson told me about your family and Shoshana. My granddaughter, Tammy, had ALL, diagnosed when she was 2 1/2 months. She was in and out of the hospital the first 1.5 years of her life. Last November she passed her 5 yr remission date, Praise God. She is a fun, loving, healthy second grader. I just wanted to share that with you. I also had met a mom in NY who at the same time had a 5 month old who had ALL. She had a harder time than Tammy, and was in remission for one year and then it came back! She had a bone marrow transplant - she is a healthy, cute little girl. This year she hits her 5 yr remission date.
    So I am saying there is hope, and with your permission I would like to add Shoshana on our church's prayer list.
    I am praying for her and for her family. God Bless you, Joanne

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  2. Tim, you and your family are constantly in our prayers. We are pleading with the Lord for strength, comfort, support, and, most ardently, healing. Thank you for sharing, it gives me greater guidance as we pray and share with our praying friends. May God's presence and comfort be apparent throughout this difficult time.

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