Ella will have one last MRI before we leave UCSF, after nearly five straight months in the hospital. From coma and despair, to hope and joy, our family has been through more in this five months than most will ever experience in their lives. The feeling of not knowing if your child will live or die, is the most horrible feeling even if it only lasts for 5 minutes. Our feeling of hopelessness lasted three months, and none of us will ever recover. Ella on the other hand appears to be recovering quite well, and although she is functioning at maybe 20 percent of normal, she is still progressing rather well, and pending the outcome of this last MRI before we leave, it would appear that her cancer is gone.
If she makes it to the 5 year point, with no new tumor growth, then she will probably never have a return of this form of cancer. Although with the dozens of CT scans and x-rays she received while in the hospital, her chances are fairly good of getting another form of cancer later in life. Those are things that are very hard to think about, because what were our options? It doesn’t matter much now, what’s done is done and we can’t take back all that radiation exposure Ella received. We are just going to cherish the time we have with her, regardless of what happens in the future. We all die someday, none of us knows when. The most important thing is truly living everyday, and never taking life for granted.
None us will be taking our time with Ella for granted, that much I can be sure of; not that any of us did before her illness. Ella was loved deeply by all of her family, we were all very aware of her special personality and talents.
We had a great christmas with Ella, all four parents were with her and she opened a slew of wonderful gifts from some very compassionate and amazing people. I videotaped the whole thing, but just want to show a small portion right now (see video below).
Thank you to Dan and Michele from Forestville, for donating to us a new hospital bed and delivering it free of charge! You both have enabled us to set up each of our homes, for Ella’s recovery, allowing her to be equally comfortable at dad’s house or at mom’s. Both of our families are so grateful to all of you who have donated money and time and gifts and advice and your personal stories, over the last few months. We have so many new and awesome friends now, Ella is sure to have a very rich life with all of you playing a vital role in it.
The letters and stories that some of you have sent to us, have left us in tears. It truly helps to know that there are others out there who have suffered and yet have found ways to feel comforted, that have enabled them to live happy lives. The advice you all have shared has not fallen of deaf ears. Maybe not some of the more religious stuff, as my Atheism prevents me from finding solace in the idea of god. But the more practical things like meditation, relaxation techniques, focusing on the positive just slightly more than the negative, have really helped.
Some of you very religious folks have taken issue with my Atheism and some of the things I wrote about in this blog, especially during the worst of the last few months. I want to say to those of you who wrote me and said terrible and hateful things to me, like I was going to hell for not being religious and worse things I can’t even bring myself to type, shame on all of you. A father was watching his child lay dying, and was helpless to do anything. You people chose that very sensitive time to argue and fight with me about my personal beliefs and how I express them in a blog set up for my family and my daughter. Should there be an all powerful creator, and should you meet him at the end of your life, you will surely be judged harshly for what you did to a grieving father in his darkest hour. That’s all I wish to say on this subject, I’ve obviously had some time to think about it, and have only written a response now, because my main focus has been on Ella’s recovery.
Regardless of my personal beliefs, some of you incredible people have simply seen a family in need, a little girl with a rare form cancer, and you have come to our aid as fellow human beings. For those compassionate acts, we are all indebted to you forever. Never hesitate to call upon me if you need some help remodeling your kitchen, yard maintenance, gutter cleaning, male escorting (dinner only), laundry services, chicken training (certified chicken trainer, by the way) or anything else you can think of.
Keep following Ella’s story, she will always need your support.
Thanks again and happy 2011!!!