Please RT to help drive some traffic their way! Give the author a shout for spreading the word!
We’re nearing 100,000 signatures on our petition! We want to say welcome to all of the new members of the #wegotthis team who joined today — amazing! We heard from our state assemblywoman’s office today, and they’ll be discussing how they can help us during their staff meeting tomorrow!
Since we launched this campaign last Friday, we’ve been receiving hundreds of requests for us to get a PO Box so that people can send money to help us with expenses. It’s great living in such a giving world, but Mikaela’s insurance has been great and we’re staying with my parents so we don’t really need any help right now with day-to-day expenses.
Today, we received a very wise recommendation: testing the genetics of Mikaela’s cancer so that we can explore therapies targeted specifically to her. Our insurance does not cover this, and it is quite expensive, so I’m thinking that this would be the best way for the givers out there to help us to give Mikaela a chance against cancer.
I set up a fundraising page which can be accessed here: http://gfwd.at/1hTL25D.
We appreciate any size donation, and we in no way require a donation to be part of the #wegotthis team. We love you guys, and we’re excited to be able to get this genetic testing done ASAP with your help!
With appreciation on an amazingly lazy Sunday,
First off, Mikaela wanted me to be sure to share her thank you video to all of you #wegotthis folks. Sorry for the poor quality, but it’s an iPhone vid.
For our local news piece from Friday to lead to coverage on a larger scale, there needs to be a great deal of visible interest. With almost 3,000 likes, 1,000 shares, and 200 comments on the FB post associated with our piece on the News 10 Facebook page, I would say we are well on the way!
To put the icing on the cake, we need to drive the story through the weekend. Please do the following 2 things to help us do just that:
1. View and SHARE the story here. Please note that there are 2 different reports at this link. The banner video that plays upon opening the page is, in my opinion, not as strong as the 2nd report which you’ll find at the end of the article. I’m working on getting a copy of the 2nd video so that we can share directly to our network.
2. If you’re on Twitter, RT & respond to these 2 tweets. For your response, please consider thanking News 10/Patrick Walker for covering our story.
That’s all for today! Hope everyone had a great day. Mikaela is nearing a return home from the hospital!
UPDATE: Mikaela is doing very well lately, and the hospital has moved her out of ICU. She could be home as soon as tomorrow!
UPDATE #2: We had our first media appearance on Friday: local News 10 (ABC) here in Sacramento. We thought it turned out well, so check it out here & please, please, please share it with your networks!
We wrote letters to several decision-makers at Bristol-Myers Squibb pleading for their assistance in providing access to their anti-PD-1 nivolumab.
According to FedEx, our letters arrived yesterday. We’re hoping the physical mail will prompt more of a humanitarian effort than our emails! Send good vibes/prayers/thoughts to BMS’s NYC HQ that those letters help give Mikaela a chance against cancer!
Merck’s should be arriving on Monday, and Genentech’s will be dropped in the mail over the weekend.
If you’d like to help by sending letters of your own, see the information below. Please remember to stay positive and mention that we are interested in either compassionate use or clinical trial opportunities, but there is extreme urgency because her cancer continues to spread while she isn’t receiving any treatment. My contact information is email@example.com & (916) 673-8274.
345 Park Avenue
New York, NY 10154
Michael Giordano, Senior Vice President Head of Oncology and Immunosciences Development
David Berman, Executive Director, Oncology
Andrew Coop, Vice President, Oncology Medical
Fouad Namouni, Vice President, Full Development Lead, Oncology
One Merck Drive
P.O. Box 100
Whitehouse Station, NJ 08889-0100
Kenneth C. Frazier, Chairman of the Board and CEO
Dr. Gary Gilliand, Senior Vice President and Head of Oncology
Eric Rubin, Vice President Oncology Clinical Research
1 DNA Way
South San Francisco, CA 94080
Richard H. Scheller, Ph.D., Executive Vice President, Research & Early Development
Susan Griffing, Sr. Director, Head of Oncology Global Operations
Patricia Moore, VP of Clinical Operations, Research and Early Development
**Before you read this, be sure that you’ve read the media kit.**
Ami Bera is in his first term as our local House representative here in Sacramento. Congressman Bera could be a great asset for us to work with to rally support for the cause; however, to make this happen we need to make it clear that many of his constituents demand this action.
Please call Ami Bera’s district office at (916) 635-0505, and ask to speak with his District Director, Faith Whitmore. If she’s not available, leave a message.
[Update 2: Please get in touch with your local media today! Contact Karen Blondell (firstname.lastname@example.org) for a template and resources for finding the contact information you need. Do it ASAP so we can get more press interested in advance of our debut on local news here in Sacramento tonight! I’ll be sharing the footage from that interview once it’s posted online. If you’re local, tune in to Channel 10 News at 5, 6, 11, or tomorrow morning when we’ll be the featured story. Thanks so much!]
We have crafted a media plan with the help of many of our followers from Mikaela’s PR days. We launch tomorrow with an interview on News 10 here in Sacramento, and from that interview we’ll be culling a great deal of content to make a massive nationwide push for Mikaela to receive single patient access to these immunotherapies. (If you haven’t signed & shared our petition yet, please do so now!)
We need YOU to volunteer to push the message to local news stations in your city. [Update: We have a great number of sign-ups on both coasts, so if you’re based there please consider taking on another city in Middle America or the South in addition to your local contacts. They need to be a part of this as well!] Please sign up below & leave a comment with your name, email, Twitter handle, and target city/cities to receive our media kit. I will keep the comments private so your information will not be shared. I’ll be sending out the media kits this evening via email & I’ll put together a list on Twitter as well.
[Update: I’ve received several inquiries from our new friends in other countries, so I’m adding some global cities outside the US as well. I added an “other” option if yours isn’t listed.]
Thank you for your help. This is our most significant request yet. Mikaela is still in the hospital, but excited about the outlook.
Please consider sharing the link to this page via Facebook or Twitter to help us reach more allies! Here’s a link to my tweet about it — just hit the RT button!
Thanks for being a part of #mikaelasarmy — all you’ve done, continue to do, and will do in the coming week to give her a chance at living beyond 25.
Mikaela & I are on our way back home, trying to decide on what she wants her first meal outside the hospital to be. Wouldn’t you know that the first thing out of her mouth is “a burrito sounds good.”
After 2+ weeks in the hospital dealing with pneumonia and a slew of subsequent issues, Mikaela is nearing discharge just in time for her birthday on the 18th!
With all of the time in bed, she’s blowing through the final season of Ally McBeal & I have to say that I’m excited to have her done with the series. I frequently feel like we are living the prime of our lives while culture is stuck in the doldrums, but the fact that a show like that could be so popular in decades gone by makes me feel a bit more secure in our times.
In other news: course of treatment recently changed a bit, and the new treatment will be causing her to lose her hair temporarily. We are going to shave it off before the medicine does the deed, and I’m going to be joining her in the shedding of the locks. Those pictures will be posted. We’ll see if I can sneak a photo of Mikaela with nothing covering her head…
Finally, we’ve found that marijuana is the best way to alleviate the nausea and lack of appetite that’s been plaguing Mikaela for the past month or so. Her stepmom made some delicious graham cracker bites with weed butter, and we purchased a Volcano to keep things covered at home — where I’m hoping I’ll be posting my next update upon her return!
This is post #1 & I’m writing this blog in the hopes that I can do a better job of communicating updates on Mikaela’s progress by posting publicly. My apologies for falling behind on keeping people looped in, but this blog will remedy the situation!
Mikaela & I have been uplifted by the remarkable amount of support from family, friends, and complete strangers throughout this process, and I can personally say that I appreciate the ways each and every one of you have gone out of your way to send Mikaela love. It means the world to her, and I love seeing the way she lights up whenever someone comes to visit, sends some kind of note or gift, or even just calls to chat.
This blog will be THE source for news on Mikaela’s progress, and I hope that it will also make you appreciate your own life in new ways.
To close a short post, I want to share a poem we both appreciated from a book I was reading while we were on one of our medical trips to UCSF — Invictus, by William Ernest Henley:
Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.
In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.
Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.
It matters not how strait the gate,
How charged with punishments the scroll.
I am the master of my fate:
I am the captain of my soul.