February 25, 2010
Throughout this journey with Natalee, I have placed a jar called 'hope' high upon a shelf so that it has been in view at all times. At times the wind has blown hard and caused the door to slam shut, making it hard to see. After pulling ourselves together and making our way to the door, we have been able to open it, to let the light shine in. Letting us again see the 'hope' jar. Sometimes the storms have been so hard that the jar has been pushed into a dark corner, and after a lot of searching we have been able to put it in its right place. Today (Feb. 22) the winds have blown so hard that the jar fell to the ground and shattered in pieces. And with the door closed I am having a hard time pulling the pieces back together. Natalee had her scans today, and the results were horrible. The standard for this study was that if her tumors grew more than 20% they would have to take her off the drug. So today she was taken off the study and right now we have no avenue of what to do. They didnt tell us how much they have grown and truthfully I didn't want to know. They did mention that even though they didn't scan her abdomen area this time they could tell that the tumors in that location have grown. Both of the doctors from Emanuel and Doernbechers are trying to find the right option.
I usually wait for the storms to pass over where I can see the brighter picture before I write anything in the blog, but we are desperately seeking help through your prayers. Right now they don't know which direction to take and truthfull there isn't a drug out there that has been successful on Renal Cell Carcinoma. For some patients they have found success while others it just doesn't work. To help you understand, tumor cell consists of two types: clear cell and non-clear cell, Natalee has the non-clear cell which is rare (10-20%) and then to break that down she has two forms of the non-clear cell which are crystalline and oblong and it is rare to have two forms of cells. She is unique!
It is our hope and faith that through all your prayers, the doctors will be led to the right information out there. There are alway new doors being opened, new studies, sometimes it could be combining two different drugs etc. So the doctors are tying to find the best avenue. If you could ask Heavenly Father, to guide the doctors in finding the correct course to take it, would mean the world to our family. We, our family, and others are having a special fast for Natalee, and would welcome anyone to join in the fast this Saturday/Sunday. THANK YOU SO MUCH!
Thursday, February 25, 2010
Friday, February 5, 2010
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.
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.
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