Tuesday, November 15, 2011

A deep deep dull pain in my stomach

This has been an up and down day. Saoirse was extra tired today, at least until around 2pm. The doctors think she has an infection in her blood, however she hasn't cultured anything again. What they think she has, is resistant to the antibiotic she has been on, so they changed it to one that works well. Unfortunately it makes her sick. On top of that, Saoirse is in a great deal of pain in her head and behind her left eye so we started her on Morphine today instead of Oxy. What a difference. Once the medicine kicked in, Saoirse kicked it into high gear playing, dancing and just being happy and comfortable. This was a sight for Kezia and I's sore eyes. Most of the day Kezia and I have been reading and researching different therapies for Recurrent Neuroblastoma. We had to make a decision by tonight because there is an urgency to start. Saoirse's tumors in her head are growing fast. First we are doing head Radiation combined with a chemotherapy she has not had yet. The chemo drugs are Temozolomide, which is taken orally, and Irinotecan which is IV. The doctors feel this is the best route to take to try to stabilize the cancer. I have to tell you that these are not the decisions parents should have to make. I have had a deep deep dull pain in my stomach along with a lump in my throat.. it feels as if all the pathways in my breathing system are swelling. This started when i finally allowed myself to think that Saoirse may die. She was doing so well and had a great response to her induction therapy and was even in remission. The cancer came back with in weeks and even grew through a high dose chemo regiment called ICE. Neuroblastoma is a nasty cancer and tends to become resistant to drugs. Radiation has a great response rate so keep your fingers crossed. I feel so helpless and all I want to do is hold her and make her comfortable. I am also feeling sad, yet optimistic because we are starting the radiation asap. Once we get it stabilized there are a few therapies we are looking into. I will write about that another day. I am feeling very overwhelmed.


  1. Please know that there are so many people praying for your beautiful daughter as well as for you and your wife. Praying for healing...and praying for you all to have strength to deal with this.

  2. Check into monoclonal antibody therapy, my wife is more of the cancer authority but it basically acts as a vaccine to identify the cancer cells if the come back http://www.mskcc.org/pediatrics/childhood/neuroblastoma/3f8-monoclonal-antibody-therapy-faqs

    Sloane Kettering and Washington U/Children's in St Louis were the only ones doing it when we were in treatment, but it can GREATLY improve their chances.