Thursday March 29, 2007

Hello again, family, friends and total strangers. I thought I would take a minute to give you a short update...if indeed I can keep it short, and if Sophie doesn't wake up and tell me "mommy, come to bed!"

My Mom gave an accurate description of the latest events, with a little more humor than you are used to getting from me. Sometimes I feel like I should be a little more optimistic, but in this situation it is hard. Although Sophie is responding well to the decrease in steroids...as of tomorrow we are down to 2mg a day...she is still no where near her old self and that is so hard to see. On Tuesday her weight was up to 42 pounds. That us an increase of 6 pounds since she was first diagnosed; a lot of weight for a little person (not even 4 feet tall to gain). Her face is so puffy it looks painfully tight, and now her hair loss is unmistakable. Lucky for her it seems to be thinning the most at the base of her skull. We are sure the radiation is working because she is definitely better than she was when we first got here, but I am desperately wanting to see some resemblance of the "old Sophie".

When my Mom said she was adamant about not wanting to go to St. Jude everyday, that was an understatment. Sophie refuses to go and cries the entire hour prior to us leaving, the entire ride there, and pretty much every minute in the waiting rooms. I have tried every trick that I can think of to distract her; every now and then I get lucky for a few seconds, but then she will resume her whining and crying. Usually I cannot even get a word in. It can be very difficult and frustrating to convince your child to participate in the therapy activities while she whines and cries, and grimaces at the therapists.

On Tuesday morning my Mom, Sophie and I were headed to St. Jude (we were running late as we often are - regardless of how early we get up). I was driving -something I don't normally do since my Dad has been our valet, with curb side service. So I was speeding down the back road from Mud Island to St. Jude, and failed to stop at the stop sign, and didn't even know that I was being pulled over until the police car was literally riding my bumper and with lights on and sirens blaring. Sophie's screaming and crying was drowning out the sirens and proving to be a real distraction form the traffic laws that I should have been following. Anyway, I tried explaining to the officer where I was headed and why...what does Sophie do? She is quietly listening to our conversation the entire time, when at this point my Mom and I were actually hoping that she WOULD cry. Of course I didn't have my purse, wallet, or license...not sure why or how, but I didn't get a ticket...please keep praying for us.

We've still been dealing with Sophie's frustration because of her port. Just yesterday she asked me if her tummy would be "normal" when we returned to Avon Lake. I thought she was referring to her bloated belly, so I asked her "What do you mean?" She said, "will it be flat or will my port still stick out?" I didn't know how to tell her that it will remain there, because her treatment will not be finished once we leave St. Jude. I feel guilty "lying" to her, because in her mind, we'll melt the ice cube, and return home to life as we once knew it...God, I can only dream and pray that is the case.


I really don't have anything new to report. Some days and moments are surely better than others, and for a split second my mind will forget why I am here in Memphis, and then I look at Sophie's face and the pile of pills and medicine on the counter and I am instantly brought back to reality. More than anything I wish that modern medicine would find a cure for this horrible cancer. This is the worst imaginable, and not because we are living it, but because there are so many others out there living it too. Tonight, I ask you to tell everyone you know about this, in an effort to raise awareness about this tumor, and hopefully get the word out as a desperate cry for some kind of legislation that will provide the necessary funds to research this cancer. It just seems like there is not enough being done. For most people, when they think of getting a second or third opinion, they expect to hear something a little different. Everything we read and everyone we talk to tells us the same grim prognosis. Please continue to pray for Sophie's miracle as well as for a miracle for all the other children and families dealing with this monster.