New beginnings with new drug

February 5, 2010

Natalee has been on her new chemo for 12 days, she seems to be handling this drug a little better. She was off chemotherapy for 4 weeks (scary) which gave time for the tumors to grow. This was necessary for the other drug to be purged from her body, before the new one was introduced. I thought that during this time she would bounce back, but instead she was worn out not feeling well for 26 days straight. Two days before she was to start her new treatment, she finally showed signs of her normal self.

The first day on this drug we had to be at the hospital from 8 AM till 8 PM for blood tests. The purpose was to see how active the drug was in her blood system. They drew blood the first half hour, then one hour, and then every two hours till 8:00. One of the downsides is she will be taking this drug for two years without any breaks. Yes that's no days off.

Actually they started this study on children in August of 2009 and is being tested in 27 locations throughout United States, Canada, and Australia. Natalee is the first accepted person here in Portland. All the clinics are on stage 3 of the dosage level (600 mg) They will increse the dosage if the patients are not responding to the drug, and as long as they are able to handle it.

Now for the update, Natalee feels better on this drug. Since she is a case study, her doctor wanted her to try the drug without using the anti-nausea pills to see her reaction. Gratefull she doesn't get nauseas from the chemo, this is exciting! She feels a bit nausea; but with the other drug she had to take an anit-nausea pill each time she took her chemo, and still felt like she was going to throw up. So far the side effects are; fatigue, migraines (daily), hiccups, and an upset system.

Some of you were aware that 'Make a Wish" was sending our family on a cruise to the Caribbean. We were to fly out tomorrow Feb. 6th, and be gone till the 14th. But with this new trial process we had to cancel our trip. "Make a wish", makes their schedules once a year for all 50 states, so we were lucky to get eccepted, their next scheduling won't be until November 2010, that is too far away. This was something that, daily, Natalee expressed her excitement for. It was the silver lining of her cloudy life. But as alway, Natalee accepts things really well and goes forward. Now the back up plan is for her to have a shopping spree!!!

As always PATIENCE is the agonizing pill; I want a normal life for my daughter right now! On the other side, Natalee is a pioneer for a drug that may prove to save others down the road. So though I want this over right now, I also want the integrity of this study to be accurate so that down the road they know what works best. We have to remind ourselves that some miracles are instant, while others take time, revealing itself one layer at a time.

Thank you for your prayers, concerns, and continuing on our journey.