Thursday, May 5, 2011

There's hope!

An interesting week, to say the least. Monday began with a slight temp, concerning EKG, a leaking drain, high pulse rate and generally feeling very poorly. This was BEFORE he was given the trial drug. Tuesday was not much better, but he did get a new temporary drain and some relief of abdominal fluid. Yesterday was great; he slept well, managing his breakthrough pain better, and eating a bit more. Today, they redid the EKG and determined Monday's was probably off a bit due to pain, staph infection and pressure on the abdominal wall. They will do another EKG next Thursday and we will discuss concerns at that time, if any. Nick is feeling fairly well today.

The really good news came from the clinical trial. There are 3 parts to this trial - part one is for a patient (one over at Primary Children's Hospital) that is receiving 50 mg; part two is for a patient (Nick) that will receive 100 mg and the third is for a patient (tbd) that will receive 150 mg or for patients from part one and two that are progressing nicely without serious side effects. Today we were told that the patient in part one just had his first set of scans after 21 days and there is a definite reduction in tumor! He has a different cancer than Nick, but the two have the same abnormal ALK gene.

Nick is hospital-free until next Thursday, when we will spend all day there again to redo all the tests (blood, EKG, urine, etc.) He also has to check in with his drain doctor; he will have to have a permanent drain put back in sometime soon, probably after he is off iv antibiotics on May 16th. Nick and Kelsey (who is still nursing a gimpy knee) will go up to Todd's for the weekend. Their aunt Chris,uncle Stan and cousins Jessica & Kris are coming out to visit; I'm sure they will have a great time while keeping it low key.

Lee, Carly & I are headed up to Spokane, Washington to attend a surprise 80th birthday party for my aunt Mary Lee (don't worry, she doesn't read this blog). We will re-connect with cousins I haven't seen for years!

Thank you all for the continued prayers. Faith has sustained our hearts to set aside worry and embrace hope once again. I like hope - it's a good thing.

With love,



Chris Ulvin said...

Dear Lori,
Have a great time in Washington. I won't be around when Nick celebrates 80 years but I am thankful to be around this weekend. At 55, low key sounds great. We will celebrate hope and Mother's Day is a perfect holiday to celebrate life. God bless you.
Love, aunt Chris

Anonymous said...

Very encouraging results on the trial. Wishing you all a wonderful weekend. Lori happy mothers day - if you weren't younger than me I'd want you to be my mother!!!! Here's to positiveness on the trial and lots of laughter and fun this weekend. GM Jennie

Anonymous said...

We're asking God to lend his great hand and so proud of Nick and his fight. Keep it up! Mike and Missy, friends of Ryan and Brad.