Wednesday, March 16, 2011
Pieces Falling into Place...
The week has been a good one. Avery has felt great all week and has had a ton of energy. This has aided tremendously in her strength training and we've found her extremely interested in walking and climbing and bending and twisting. It's so great to see her have that energy after 6 rounds of high dose chemo. She is especially excited about this warmer weather we have so that she can get outside in her cool walker and stroll about the neighborhood.
I have been in contact with the Dr's at St Jude and Memorial Sloan Kettering and it appears we are closer to a date for our NY trip. At this point we plan to spend the week of April 4th in Memphis getting our diagnostic tests again, as well as a flow study for her CSF (spinal fluid) and brain surgery for an addition to her shunt for the study. All in all we should be able to come back by Friday of that week - but I suspect we will immediately turn around and leave again for NY. The Dr in NY would like to see us by Monday the 11th, so we will have a very quick unpack and repack for the next leg of our journey. Jeremy and I plan to fly out to NY together and then he will return home to work -- we hope to trade off weeks through the month until she finishes the treatment.
The ladies of Ryan Lawn & Tree are organizing a walk for Avery after she completes her treatment in NY. It will be June 4th at Shawnee Mission Park - so save the date! As soon as we have more details I will make sure to post. It will be so great to see everyone again. We sure hope everyone can make it out. By then she may actually have some hair coming back in and she may even be able to walk a little bit herself! Course we have the bling bling gold walker as a back up - so no worries there.
Every day - something amazing happens or is shared with us. On Friday we were assigned to a nurse to prep us for surgery and while we were waiting for the surgeons to finish up the case before ours we got to chatting. This nurse was so excited to tell us that her 3 year old son had been diagnosed with Neuroblastoma and had also gone to Sloan Kettering for the 3F8 Clinical Trial. He relapsed 3 times before doing this study and this was the last treatment he received. Crazy huh? Want to know what is even better? Her son is now 24.
Kinda gives you the chills - huh?
Next.... today a coworker told me that his teenage daughter follows very closely with Avery's story and she has shared it with many of her friends and their family's. On one particular occasion she was over at friends house and sharing Avery's journey with the friend's aunt who is pregnant. A few days later this friend called to tell her that her Aunt had decided to name her baby girl Avery. So for most of us that don't have a child named after us -- My two year old does -- kinda makes you want to cry huh?
Like I said -- amazing. This experience has opened our eyes to so much and while it sucks...and I mean really sucks, to be going through this, there are some amazing things that we would have never done/thought/said/shared/experienced if we weren't on this road. We are different people than we were a year ago. Better, in so many ways. Stronger, for so many reasons. And blessed with so many amazing things. The harder you work the more it means to you -- I am just waiting for the day when we can finally stop working and start enjoying life a little more. In the mean time -- we roll up our sleeves and keep on trekking cause bottom line is You Don't Have a Choice.
Posted by Jeremy, Jenn and Avery at 8:17 PM