- get a call early morning from the Hem/Onc clinic at Riley (Sally to be exact) asking if I had yet to heard anything from Sloan Kettering or Dr. K. promptly answering NO, Sally said Dr. Shih had been calling and calling Dr. K's office and leaving message with no return call.
- I got REALLY pissy and started updated facebook as such, I then placed a call to Dr. K's office asking what the next step was and so on. I spoke to a girl who collected our insurance info and Keeg's social security number. She said she would give Dr. K the message I called.
- THEN I emailed Dr. K, I wanted to put in writing both my worry and my urgency to get the point across. Asking her to get to me in a timely matter.
- I then talked with Dr. Shih who expressed frustration with getting a hold of the right person at Sloan. We talked about at least knowing what they are thinking so we could do something in the meantime.
- FINALLY at around 4 my time 5 NYC time Dr. K called me. I was shocked and OMGGGEEEEE ish.....she discussed how she wanted the plan to go and explained that she had just gotten off the phone with Dr. Shih. While I was talking with her about what needs to be done to get to NYC Dr. Shih beeped in. I ignored it.
- When the conversation with Dr. K was through I listed to the voicemail from Dr. Shih, he beeped in while I was listening to his message. I clicked over and the plan started to take shape.
- He was as relieved as I was to finally have an idea as to what, when and where everything was going to happen.
- So here is the LOW DOWN of the next couple months of our life:
- So as you can see, next week or this coming Sunday, we are heading North to Indy. Dr. Ackerman actually called me after I made these calendars and she said they are doing a small brain procedure and putting in a new Picc Line first thing Monday morning. The Brain procedure will be installing an on/off switch for his shunt so when the drugs in NYC are administered they won't drain right into the belly. They may or may not still install a reservoir, that is to be determined. The PICC line needs to be placed for the chemo next week as well as blood draws and other such cancer/chemo related stuff.
- We have to be off chemo 3 weeks before we can start on the trial which would leave us at July 11 but I expressed to Dr. K that our family trip that has been planned and plotted, saved and scrimped for since last fall is the week of the 11th. She said she has absolutely NO problem with us being in NYC the following week. Dr. Shih also knows how important this trip is to us as a family and is so happy we will be able to do both.
Financially this is no easy feat, the Rummage Sale and its components are still on For Saturday June 25th to help raise money for our 2 month stay in NYC. The flights are expensive, the housing is expensive and I can only imagine how much the food is going to cost.
On that note
Love ya'll and thanks for thinking and praying for us!