Yesterday.

What a tornado of a day yesterday was. It started just like any other, getting up just after 4 a.m. to head to work. The exception being that I would break early to take my baby to the eye doctor. After a couple of hours waiting, he confirmed what we didn't want to hear. My baby has the same cancer I had as a child. The doctor recommended a few treatment centers, one of which is St. Jude's in Memphis TN. He also recommended we get there as soon as possible, even checking on a Life Flight jet. But the jet would only seat one parent, if available. As it was, there was not a jet available, so he told us to go home and pack our bags and drive to Memphis. Quite a different end to the day than I had hoped for. I will never forget packing my clothes into a duffel bag and wondering to myself how this was going to work. I knew for a fact I had less than $50 to my name before my next paycheck deposits, and that was still 3 days away. I was packing for a 7 hour trip and couldn't pay for half the distance. Amazingly, thanks to some quick phone calls to and from family members, less than an hour later I was holding well over $300 with a few more offers ready to send at a moment's notice. So, we take off to Memphis, arriving around 11:00 p.m. By the time the registration and initial check-over were completed, and 3 trips up and down stairs to unload what seemed like half our worldly possessions, we got to sleep around 1:30 this morning. I woke up around 5 to Lailah screaming bloody murder as they were putting the IV into her foot.
First thing this morning was a EUA, evaluation under anesthesiology, which revealed the biggest cause of concern was the location, not the size, of the tumors. The problem is how close to the center of sight the tumors are located. The location precludes laser as the most effective treatment, because the laser poses as much harm to the optic nerve at this point as it does to the tumor. That being said, the next best option would have been open radiation, similar to part of my treatment 25 years ago. The problem with radiation being her age. At only 3 weeks they are hesitant to use open radiation, usually preferring over 3 months of age before beginning that treatment. Thus leaving us with a 'light' chemotherapy treatment as our best option. The hope is to shrink the tumor far enough away from the optic nerve center to make a laser treatment more feasible. There will also be a MRI tomorrow because of a minute chance of an associated tumor on the brain that is VERY rare, but still possible. That's all the negative we have at the moment, now on to what has been positive: Within 24 hours of discovery, a network of literally thousands of people are praying across the country. As I mentioned earlier, the financial support to get us up here was significant and almost immediate. St. Jude's has welcomed us with open arms into what is a most amazing and friendly, positive atmosphere. Everything we could possibly need has been provided for, as well as amenities and benefits you would associate more with an exclusive resort than a health care facility, including a Starbucks! Today we will check into the Grizzly house, which is operated by the Memphis Grizzlies basketball team. (Similar to the Ronald McDonald house my family stayed in while I was in NYC.) There I hope to find a real bed that my dainty frame can fit in without danger of my feet cramping permanently. Maybe a coffee maker too. My love for Starbucks is tempered with the fact that my addiction could easily top $15 a day left to it's own devices. So, I digress to the far less fascinating Standard Coffee Pot. What we are working with now is settling into a bit of a routine of treatment and salvaging as much 'normal' as possible. I will keep posting more details as they are revealed to us. Everything else we know at the moment are what-ifs and maybes, and I would rather share what I know as fact. So keep us in your prayers, we will keep you updated through this blog, and posts on Facebook. God Bless you all for your concern, and we greatly appreciate it.