Support Registry Update

Chemo round three

In support of
The Steinhaus Family
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We're at NYU for chemo round three. Andrew had a nice few days leading up to today. Yesterday, we took Vivian to church, went to brunch, and had friends over for a pool day. Pool days and less-awkward showers are now a reality because his picc line was removed and IV antibiotic treatment ended last week. Saturday morning, we took Vivian and Wesley to the park together, which we haven't done since the day before Andrew was diagnosed in June. Andrew's cold sensitivity went away, and he pregamed this morning with an ice cream sandwich.

We learned in his pre-chemo appointment that his platelet count is low, dropping significantly since last time. Low platelets increase the risk of bleeding, potentially made even worse by his blood thinners. The solution is to decrease the dosage of one of the chemo meds, irinotecan. This is the same medication we discussed decreasing earlier because of severe side effects, but ultimately kept stable thanks to better symptom management.

Andrew was on the highest-possible dosage of irinotecan—something the vast majority of patients are not prescribed—so there was room to decrease it. But we are still bummed because it felt good (emotionally, definitely not physically) be as aggressive as possible. On the bright side, it's better to have this option vs. delay chemo. Please pray with us that his levels are much better next time. In our ideal world, he'd go back up to the max dosage. More realistically, a rebound would allow us to continue with the treatment as planned at the new dosage. The oncology NP assured us that consistency in treatment is more important than dosage alone.

While that lab result was disappointing, we are celebrating another. Periodically, his doctor tests his CA 19-9, a(n imperfect) cancer marker test. In theory, a low or decreasing result means there are no tumors or treatment is working. High or increasing levels could indicate a large disease burden and/or treatment is failing. Andrew's oncologist warned us not to read too far into any single result, as it's more helpful to look at trends from serial measurements. A normal result for a healthy person is under 40ish. On June 3, his CA 19-9 was 3,553. On June 12 (before chemo started), it jumped to 4,709. Today, 989. We are taking a victory lap on that one.

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Comments

Deb Long

sending good thoughts and prayers for all of you! Thank you for sharing a great update. Take care!!!
  • over 1 year ago

Francesco Deluca

Praying for consistency in treatment and results. Hoping you guys can make the most of quality time together.
  • over 1 year ago

Nicole Fiorica

Praying for this next round of chemo and that symptoms stay manageable! Much love to everyone.
  • over 1 year ago

Debbie Smith

Love y’all! Praying everyday! Love Andrew’s smile! Praying this treatment goes smoothly.❤️🙏
  • over 1 year ago

Kathryn Condon

Praying for all of you, Elyse. Great photo of Andrew! Thinking of you and sending encouraging thoughts.
  • over 1 year ago

Neia Souza

🙏🙏 praying everyday day for you Andrew… keep strong… we are fighting with you 🙌🙌❤️❤️
  • over 1 year ago

Jane Terkoski

Andrew and Elyse, I am taking and celebrating that victory lap with you. Every glimmer is a gem. Continuing to lift you in prayer with expectancy that God will hear and heal. Thank you for keeping us updated. You are an example of pure strength, courage, and faith.
  • over 1 year ago

Karell Roxas

100% that's a victory lap. Praying that his levels are in a better place the next time they check.
  • over 1 year ago

Mwaka Yawawa

Praying for you every step of the way. One day at a time. May God give you strength and peace. 💙💙
  • over 1 year ago

Mary Myers

Thank you, oh God, for your favor over Andrew’s healing. We give you all the honor & glory for you are the divine and majestic Physician We ask for rest where there is a shortage
For abounding love and compassion
We lift up Andrew, Elyse, Vivi & Wesley to you each and every day
In your son’s most holy name, Jesus Christ. Aunt Mawry
  • over 1 year ago

Chris McDaniel

Keep the victory laps coming! Prayers being said for healing, positive attitude and reliance on our savior. Love the pre-game ice cream!!
  • over 1 year ago

Jennifer.barrett

Celebrate those wins. Sending you both love.
  • over 1 year ago

Kelley Myers

My kinda pregame! He earned that ice cream sandwich! Keep up the good work Andrew. Praying you’re feeling well this week. We love you guys!
  • over 1 year ago