Category Archives: Uncategorized

Updates

Mikaela has been transferred to UCSF Medical Center so their specialists can help us treat her partially obstructed bowels. We were transported last night from Folsom, so she’s settling into her new TINY room today. She hasn’t eaten for 5 days, but they’ve hooked her up to IV nutrition which is strengthening her while we figure out how to resolve the problem. We’re meeting with the specialists today and will hopefully be taking action to resolve the problem over the weekend. Your prayers, thoughts, and vibes are much appreciated during this hectic time.

On the compassionate use front, we’ve identified 2 smaller companies with anti-PD-1 immunotherapies in development. These options are earlier in the development cycle & don’t have any data for renal cell carcinoma, but we are more than willing to give either of them a shot. Our oncologist will be reaching out to these companies in the next week, so we should have an update for you soon!

Hoping for a productive weekend, #WE(still)GOTTHIS — Keith

Change of Plans

My apologies for the silence since announcing the petition drop-off scheduled for Friday. Mikaela is back in the hospital with severe nausea issues 😦 She had some issues with a procedure last night; she’s completely stable, but I don’t want to leave her right now so we’re postponing the delivery for the time being.

Keep sharing that petition URL!
change.org/savemywife

-Keith

Delivering Change.org Petitions This Week!

We are planning on delivering our 400k+ petitions to Merck this week. We will have more details and ways to help out in the near future, but for now it’d be great if you could help us afford last-minute cross-country flights for Mikaela’s sister & I by RTing these posts:

 

Excited for the week ahead. Thankful for your support — Keith

Dr. Besser Decision

Thanks for all the great input here on the blog and on our Facebook page about responding to Dr. Besser’s comments. Based on your feedback, Mikaela & I have decided the best course of action is to just ignore and dedicate our time and attention to building on our momentum. Thanks for all the great feedback!

Responding to Dr. Besser from GMA

NOTE: We were scheduled to be on Al Jazeera’s The Stream Tuesday, but they just cancelled on us. I’m guessing that it has something to do with them not being able to find a medical ethicist willing to serve as the opposing viewpoint on Live TV.

Since we aren’t going to have the opportunity to finally debunk the arguments “medical ethicists” have been allowed to make without our response at the end of several of our TV segments, I want to briefly touch on the Good Morning America piece — you can watch it here if you missed it.

Dr. Besser

Dr. Besser

I appreciated the coverage and enjoyed the piece up until the final seconds. The segment closes with the following statement from Dr. Richard Besser, ABC News’ chief health and medical editor:

“You’d like that [Mikaela’s access to anti-PD-1 immunotherapy] to be a decision that’s made by people that are caring for her, not by the pressure put on by a social media campaign.”

Mikaela & I are committed to keeping this campaign positive, but we feel we must respond directly to this statement. This is simply poor journalism and absolute ignorance on the part of Dr. Besser; in this piece about medicine, he completely dropped the ball.

1) Dr. Besser’s underlying implication is that Mikaela and I are doing this in spite of doctor’s counsel. This implication is baseless and false: not only were we never asked by GMA if our oncologists supported our efforts, we didn’t even know about anti-PD-1 immunotherapy until one of our oncologists told us, “we need to get you anti-PD-1.”

2) The inability of “the people that are caring for her” to provide Mikaela with access to the most promising drug for her condition is the very reason why we were forced to start the #WEGOTTHIS campaign, and ABC News’ chief health editor should understand that before commenting on our story. We’d obviously MUCH rather have our doctors be able to simply prescribe this medication to us or get us into a clinical trial instead of spending valuable time on a social media campaign.

As ABC News’ chief medical reporter, Dr. Besser had an opportunity to lend deserved credence to our statements about the potential demonstrated by anti-PD-1 immunotherapies in Phase I/II clinical trials; instead, he made an unfounded and irrelevant statement that distracts from the fight for Mikaela to have a chance at living beyond 25.

#WEGOTTHIS COMMUNITY: Should we take action on this? [comment below]

#WEGOTTHIS IN PANDODAILY

Please RT to help drive some traffic their way! Give the author a shout for spreading the word!

Our BMS Letters Arrived

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!

View the letter we sent.

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 keith.knapp.jr@gmail.com & (916) 673-8274.

Bristol-Myers Squibb
345 Park Avenue
New York, NY 10154

anti-PD-1: nivolumab

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

Merck
One Merck Drive
P.O. Box 100
Whitehouse Station, NJ 08889-0100

anti-PD-1: lambrolizumab

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

Genentech, Inc.
1 DNA Way
South San Francisco, CA 94080

anti-PD-L1: MPDL3280A

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

Thanks!

Going Home!

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.”

Hospital Departure Imminent

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!

Sure beats more synthetic meds & their endless side effects

Sure beats more synthetic meds & their endless side effects

Swankiness makes the hospital stay much more reasonable. You would think the oncology department would be the nicest part of the hospital, but you'd be surprised!

Swankiness makes the hospital stay much more reasonable. You would think the oncology department would be the nicest part of the hospital, but you’d be surprised!