A Final Update

IMG_5657 IMG_9917As our community approaches the size of our hometown of Sacramento, I have a final update to share: Mikaela has been transitioned to hospice care & I’ve decided to table the campaign to remove any distractions during this time. These are difficult words to type, but it’s the clear choice at this point.

While we were not successful with getting the drug, your support has been essential in providing a boost of hope to get us through the past couple months — THANK YOU! If you’re able, here are 3 ways you can help us in the coming days:

1) THOUGHTS: As we enjoy our final days together, your thoughts/prayers/vibes for a smooth and pain-free transition are much appreciated. The hospice team has been doing a great job of keeping Mikaela comfortable, and we’re doing everything we can to keep it that way. It’s an unavoidably precarious situation, so your thoughts are much appreciated!
2) MONEY: Having never been through a situation like this before, I’m nervous about the costs of everything in the coming weeks. If you’re able, we’d greatly appreciate any financial assistance you’re able to provide. You were all extremely generous during our campaign to cover the cost of genetic testing, and we’ll be receiving those results shortly. In lieu of setting up a whole new fundraising page, we’re just going to keep the page for that campaign open for the time being. Thanks to those who are able, and we completely understand if you’re not!
3) SUPPORTING OTHERS: Please do not allow the outcome of our campaign stop you from supporting others. Even though we were unsuccessful, the fight brought great joy to Mikaela during these rough times and anyone in her position will benefit from a similar experience. You’ll be able to find other compassionate use petitions & I want to highlight the petition for 10 year-old Joey Xu as he faces the same subtype of kidney cancer.

Nothing I can say will make up for the half-million who’ve lent their support, but I hope I’ll be able to repay the favor someday to as many of you as possible. Just let me know! If her story has provided you even a fraction of the inspiration it’s given me, then I’m proud to know that she made the world a better place.

Holding Mikaela’s hand & prepared for the coming days,

Keith Knapp

ps: I hope you enjoy these final pictures of Mikaela’s unfailing positivity. These were taken just a few days ago, with Mikaela making funny faces while wearing her friend’s glasses.

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]

Saturday Update #1

I’m going to start doing an update every Saturday morning, with news about Mikaela’s health, progress on the #WEGOTTHIS campaign, and a list of help requests for the week. I will share it to our Facebook page, but you can also subscribe to updates to our blog by clicking the “Follow She Got This” button at the bottom-left of this page.  – Keith

First, a health update: the discharge paperwork has been filed, and Mikaela is slated to come back home today! I can’t tell you how excited I am to wake up next to her tomorrow morning.

You might not see many posts from me over the weekend, as I’m going to be focusing on getting Mikaela settled back in to home life & a restorative diet, so I want to fill you in on the plans for next week & how you can help out.

First of all, thanks to your suggestions we’ve identified a couple more anti-PD-1 Phase I clinical trials to explore. We’re targeting firm responses on each of them by Friday, and we’ll definitely keep you posted.

We are choosing to be optimistic about these new trials, but our continued rejections from every clinical trial we contact make it clear that we need to keep forging ahead on the compassionate use front. Further, Mikaela’s health is in such a state that we don’t have time to put compassionate use on the back-burner.

To that end, we’ll be working with change.org to plan a day in the near future to personally deliver our massive number of petitions directly to the pharmaceutical companies. This is where YOU come in: Over the next week, while we are exploring these clinical trials, we need our community to grow significantly. A quarter-million signatures is very strong, but I want so many petitions that we need other people to help us carry the boxes full of them when we drop them off.

Request: Expanding the #WEGOTTHIS Community
I know most of you have pushed this to your friends on Facebook, Twitter, and LinkedIn, and that’s helped us get to this point; however, Mikaela & I need you to find some time in the next week to get this story in front of the eyes of everyone in your local community. Push our media kit to your local media; ask your school, church, office, professional sports team, student group, etc. for the opportunity to speak and share our story and the link to the petition (change.org/savemywife); make sure every member of your family has signed; and reach out to celebrities/athletes on Twitter to get them involved. I don’t have a firm number that we need to reach to consider this week a success, but 500,000 by next Friday would leave us in a very strong position if we were to be rejected from all these Phase I trials. I am available for any and all media opportunities, so please put any contacts you have or make in touch with me — contact info available on the media page.

Next week, we’ll have more details about the petition deliveries, including an invite for you to participate. The HQs of these pharmaceutical companies are in NYC/NJ & South San Francisco, so if you’re in the area we’d love to have you join us for this significant day. But that’s next week…for now, let’s ramp up the recruitment effort, and drive our numbers further!

#WEGOTTHIS

With love from Keith & Mikaela in rainy Folsom, CA.

 

 

Update: Congressman Ami Bera

Neil & Tristen showed some gratefulness. Have you? Send Congressman Bera a thanks for Mikaela & I, if you have the time!

Be a Part of Our Video

Hey #wegotthis family:

We’re putting together a video to spread the word about our community to various national media outlets, and we need YOU to make it whole! Here’s how you can join in:

Step 1: Go somewhere beautiful nearby.
Step 2: Shoot a short video of you (& fellow #wegotthis peeps) saying SHOUTING, “We Got This!!” (NOTE: If you’re using a smart phone, please shoot in landscape orientation — phone laying on the side — so it looks good on TV.)
Step 3: Send me the video before this Thursday, March 27th: keithknappjr@gmail.com
Step 4: See yourself on our video collage when we share it this weekend!

Let me know if you have any questions. Looking forward to showing off our new family!

Love,
Keith

PS: Here’s an example: http://youtu.be/mCU1sI8Nads. And here’s another example for a larger group: https://www.youtube.com/watch?v=PO5evxY_XQs.

Short but Exciting Update

To celebrate, join our #wegotthis video!