The Chordoma Foundation conferences are truly outstanding, lot's more at this link. Below: the top picture of the patent/caregiver community that attended and below that, a picture of chordoma expert physicians and researchers who traveled in from 12 countries for the Scientific/Research workshop that preceded the patient conference. A-freaking-mazing that at each conference so many experts are laser focused how to treat this rotten disease, truly remarkable and unprecedented for such a ludicrously rare disease. One of the researchers received an award and at the podium he commented on the fact that seeing so many people impacted who are so involved further inspired him to do more. Amazing!
Now, get a look at all of them, all the specialists and chordoma researchers... wow!!
Our friend and chordoma warrior Irith asked me if saw signs or have dreams that include Madison. As I'd written here, that was one. Another... I had misplaced my glasses, gone for months. When picking up Madison's ashes from the funeral home I decided to take her car to keep the battery charged. I figured the safest no-tipping over place for the ern was on the floor of the backseat and bam, my glasses were right there. Another: when I went to the Verizon store to turn in Madison's phone, which took 30 minutes while they figured out how to no-charge cancel her phone contract. At the counter where I was for the duration, speakers with crosses on them. Hmmm, Madison always encouraged me to get more deeply in to faith, but what kind of speaker logo has a cross?!
So the knuckleheads at Verizon sent me a bill for the balance of Madi's iPhone 7, just over 500 bucks. Having the picture above of the speakers and being date-stamped, I could tell them what day and time I was in the store, so they knew who was working, called the store and figured it out, then reversed the $500 charge for a phone I handed them then and there.
I traveled to the chordoma conference last week a day early to reminisce. I took the train to MGH and had a great for breakfast ($4 included a milk), then popped over to Christopher's Haven, a place that provided a home for us when cancer hit our home. Their mission and small staff are awesome. I'm going to mail them a Team Christopher's Haven jersey Madi wore for a CH fundraiser back in 2014. From there as if Madi was calling the shots, walked up Charles street to the Common and then a casual stroll to Government Center. Okay, now hungry, jumped on the train and headed to Harvard for lunch... where else, Chipotle for a bite and a quick picture. While it may sound like a sad day, it wasn't, not in the least! It generated memories of some very happy times and how proud moms and I were of her... still are!
Hiya Madi - We all missed you in Boston this year. If you were measured by how much you were admired and loved, you'd have lived forever.
P.S. Thanks for sending the bird down after you left, nice touch Shug. I'm betting the bird was over at Brookberry Lane too :-)