Well everyone, it’s been a little over a month since we last posted an update. We’ve been working hard on a new routine with Ella home, it’s been a struggle to say the least, but we’re feeling more and more comfortable every day. Ella as well is settling in, I will say much better than the four of us parents. To her there are only two concerns, we hear “when do I go back to school?” and “what’s for lunch and then what’s for dinner?” about 50 times a day. We’re hoping to get her back to Live Oak Charter School in Petaluma, in the fall, we’ll be speaking with them next week. As far as the food goes, she knows she’s still on a G-Tube and won’t be eating full meals, orally, for quite some time. This however doesn’t prevent her from dreaming out loud, and we try to answers those dream/wishes the best and safest way possible (with a little sneaky food now and again).
Today was a very important day for Ella. Last week she had another MRI to see if there was any new tumor growth. The results were given to us today at Kaiser in Oakland in a meeting we parents and Ella had with all of Ella’s amazing doctors. The results are very good, as of right now there is no new tumor growth. Ella will have an MRI done every three months for the next year and a half, if the results are the same each time, she’ll move to having it done every four months, then every six months, then every year, for the rest of her life. There is no way anyone can say for certain, that Ella will never have brain cancer again, and due to all the CT scans and X-rays she has received, there is an increased risk of her developing another form of cancer down the road. However, her long term prognosis looks good, and within the next year she will continue her daily rehabilitation exercises, and hopefully one day this incredibly brave and inspirational little woman, will walk up on stage at another school talent show, and sing a song she wrote about the cancer that tried to destroy her. Or maybe it should just be a song about kittens.
Had a chance to see the two brilliant neurosurgeons, Dr. Pang and Dr. Zovickian today, the two men who saved Ella’s life. As I shook their hands again and thanked them, I felt chills, and got nervous. I usually don’t get star struck, and it’s not like I’ve never met these guys before. But as an avid fan of science, these two brilliant doctors are like rock stars to me. I have so much respect for what they do, that I seriously get a little shaky and wish I had head shots of them both, so I could get autographs. I should do that, for Ella, I think later on in life she’ll be thrilled to have pictures of the two men who saved her life, up on her wall.
I mean people have pictures of Jesus up on their walls, but when do they have pictures of actual real people who have saved their life?
I’ll ruffle a few feathers with last statement, but ya know what, who cares!
I’ve got my daughter back, she’s alive, cancer-free and recovering by leaps and bounds on a daily basis!
Again, many thanks to all of you who have stood by our family through all of this, helped us with your compassion and love and so much more. Truly you are the people who got us through to where we are now, and we owe you so much. Anyone who wants to meet Ella, wants to see in person the little girl you’ve read all about all these months, please send me an email firstname.lastname@example.org and we’d love to have you to our home for some food and drink and friendship.
We’re always open to accepting donations, Alycia and I are still not working as we are caring for Ella full time, so please know that your financial donation goes a long way as well.
Deb said she’ll upload some video of Ella celebrating at Fenton’s Ice Cream Shop, today, the results of her MRI. It’s both hilarious and heartwarming.