Join Date: Jan 2008
Location: Reisterstown, Maryland
Friday, December 11, 2009 12:32 PM, CST
Sicily and I just returned home from the clinic. My acceptance and desire to be flexible is paying off...treatment plans have changed once again. But, like before, I am okay with it. It has been explained to me that the drug, Topotecan, has not shown promising results in diffused anaplastic Wilm's. Therefore we are not going to use it. Instead, we will go ahead with another round of ICE, starting on Monday, scan on January 4th, then, depending on the results of the scan, possibly move forward with Irenatecan...which is one of the drugs that came back on the molecular profiling report as having possible clinical benefits. It is a cousin drug to Topotecan and I know it was producing good results in another anaplastic patient.
Again, we will live day by day. I know I will probably experience the most emotions to date when Sicily is scanned on January 4th. We are also not going to consider a stem cell transplant anymore as an option. Again, when dealing with anaplastic cells, in balancing the level of toxicity with the desired results, it has proved less promising. I am starting to feel that if we can't beat down this beast with the drugs we are currently using and plan to use, then we are going to run out of options. This is the first time I've felt a small sense of fear about becoming a hopeless case down the road. I'm not scared, yet, but the thoughts are starting to move closer to the forefront of my mind.
I've read and heard about phase I, phase II and phase III trials and never really understood what they meant. Dr. Hum took the time to explain them to me so I could better understand. So, if I understood her correctly, right now, by using ICE, we are considered in a phase III...the toxicity levels of the drugs being used are known and they have data to show their potential benefits. In a phase II trial, some information is known about the effects and dangers of the drugs, but not everything. So if we continue with the ICE protocol and add the Irenatecan, we would be in a phase II study.
In a phase I, the patient is basically a guinea pig and may not benefit at all from the drugs being used. This is were the hope lies in trying to find something not normally used to treat a specific type of cancer. I conjure up a visualization of “grabbing at straws.” Some may pull out a long straw that allows them to continue to live a quality of life, while others who end up with the short stubby plastic tube become research data for patients in the future, meaning their chemo cocktail can be crossed off the list of “what does not work” in future patients with similar types of cancer.
In my limited understanding of biology and the make-up of the human body, I still have thoughts that since every human being's genetic make-up is different in little ways and big, that just because one type of drug did or did not work for one person, does not mean it may or may not work for another. That is just my gut notion and it has absolutely no scientific evidence to back it up. I guess that is also where I place the fact that I will continue to hold onto hope that we can find something somewhere to save our daughter's life! It is such a precious life to save!
I get goosebumps when I hear Sicily say her “I love yous”...she has her own way of saying them. One of her favorites is to say she loves you to “something” like the moon or the stars or the sun. Lately she has been saying, “I love you all the way to heaven, mommy!” I can't help but sometimes think and wonder is she knows something we do not. I try to push those thoughts out of my mind, but I still also allow them to comfort me.
Sicily still talks a lot about her friend, Esther, and that she is in heaven and that she is with Jesus. I don't really know if she comprehends what that means as just today when we were driving home from the clinic she talked about Esther, heaven and Jesus. She wanted to know if Esther was asleep and I told her that she most likely was awake up in heaven. Then she proceeded to explain that the last time we saw Esther she was asleep. At least in her little just turned four-year-old eyes, Esther looked like she was asleep as she lay in that pretty long box. I took a deep breathe and tried, in a simple matter of fact tone of voice, to clarify that the only way Esther was able to be in heaven with Jesus was because she died. She replied, “Esther died?” as if that was the first time she had heard it. I don't expect her to understand, but I continue to feel a sense of security that Sicily is aware of heaven and knows and accepts that is where Jesus (and her beloved Esther) live. And hopefully, someday, ALL of us will live there, as well. Some before others...some earlier than we hoped...but it will be the place we can all be reunited! In a nut shell, there lies the reason why I choose to have faith...there lies why I choose to believe...there lies how I live day to day knowing of the impending possibility of my daughter's mortality. There is a “happily ever after” if you believe!!! God's terms...not mine!!!
I will take Sicily to the hospital on Monday at 10:30 to be admitted for treatment. Luckily, we are expecting the company of two of Patrick's sisters from Kansas. Patrick and I have a Christmas dinner to attend and Corinthian has an art awards event both on Tuesday night. Aunt Valerie, who is Corinthian's Godmother, will accompany him to his ceremony while Aunt Bett will stay with Sicily in the hospital so Patrick and I can have an evening out. Our nephew, Taylor, will come hang out with Isabella and Elias at the house until Corinthian and Valerie make it home. After the dinner, I will return to the hospital and relieve Bett. I think we have all of our basis covered! ; )
Everyone have a wonderful weekend. We plan on enjoying ours! I'm ready to wrap presents by a warm fire. I have actually been able to do some Christmas shopping (thanks to the wonders of the internet) and need to get some wrapped presents under the tree. I love to wrap presents! For some reason it is therapeutic to me. So, wish me “Happy Wrapping!”