SAVE ISABEL!!! (Please) 

Many of you know that a few years ago I was invited to share my story about living with a terminal illness via a television show called, My Last Days CLICK TO WATCH. I was one of five others who have been valiantly trying to serve others, make a small difference on this planet while also trying to save our own lives. Tragically, we already lost Claire Wineland to the angels (CHECK OUT HER MAGNIFICENCE HERE). Now, one of the sweetest, strongest people I know, another cast member, desperately needs help to stay alive. Please read an update to her story, and sign her petition to continue to get the life saving treatment that she so desperately deserves. She and her family have done everything legally to stay here in this country to keep Isabel alive. I implore you to at minimum sign her petition, and if you have any resources to help, please, please, please let me know and I can connect you to her and her lovely family. Thank you for taking the time to read this, I am incredibly grateful to you!

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Two of my favorite people! I swear @isabel.sparkles's aura is just heart bubbles exploding from her soul. 💕💕💕

A post shared by Happy Coconuts (@jessica_oldwyn) on Aug 19, 2016 at 1:20pm PDT

(The following has been copied from her change.org page)

Save Isabel

Told that she would die by the age of 7 due to a rare medical condition, Isabel moved to the U.S. to access life-saving medication and care not available in her home country. Now she is being deported, with just 33 days notice, despite 16 years of living in the U.S. a legal resident.

Help keep Isabel in the U.S. so she can continue to access life-saving medical care.

Tweet the White House & President Trump

About Isabel

Isabel is an inspiration to everyone who meets her. She is smart, lively, lovely and full of plans. Despite being told that she would die by the age of 7, Isabel has defied the odds through life-saving medication and care. She recently graduated from college with honors and is an active member of her community.

In 2016, Isabel was featured on the popular TV series, My Last Days. To see her episode and learn more about her story please CLICK HERE.

Isabel is severely disabled - wheelchair bound with a tracheotomy. She suffers from a rare, life-threatening disorder called Maroteaux-Lamy Syndrome, also known as Mucopolysaccharidosis Type VI (MPS-6). She receives weekly day-long treatments at UCSF Children’s Hospital in Oakland, which is paid for through her private medical insurance.

About Her Situation

In 2003, Isabel and her family moved to the United States to participate in a clinical trial to treat her rare condition. Upon FDA approval of the treatment, the family stayed in the U.S., legally, in accordance with a medical deferred action status, so that Isabel could continue receiving treatment and additional medical care crucial to her health. The treatment is not available in Guatemala.

Isabel and her family have lived in the U.S. legally for 16 years. Isabel’s mother is her primary caregiver, while her father works and provides for the family. They own a home, pay taxes, are active in their community, and have complied with all legal requirements of their visa.

On August 13, USCIS denied extension of their Deferred Action Status, ordering Isabel and her family to return to Guatemala. If the family does not leave within 33 days, deportation proceedings will be initiated. Immigration attorneys are reporting similar denials across the U.S., except to U.S. military families. Lack of notice prevents the family from making any accommodation for Isabel’s care.

According to Martin Lawler, Isabel’s San Francisco immigration attorney, “Isabel and her family have followed all the immigration rules. She is not a burden to the government and has private medical insurance. It is outrageous to deport a young person with a serious illness that can only be treated in the U.S. Where has our compassion gone? USCIS should extend Isabel and her family’s deferred action status.”

SIGN THE PETITION HERE

A Letter From Dad

My dad emailed yesterday, after calling in tears. He is deeply moved by all of the generosity, and compassion, and felt compelled to share his feelings on the blog. I love him so much, and am happy to oblige!

Hi Jess, 

Humility to a new level!

Greetings to one and all, my daughter has graciously allowed me to interject some thoughts on her blog. This is prompted by the results of the GoFundMe (instigated by some wonderful friends of my little Cricket).

Bonnie and I just returned from an arduous trip. It was difficult, but full of beauty. The goal was to procure medicine for Jessica in another country, a country that is extremely poor. The beautiful souls we met, who helped us, did it with joy in their hearts, but not much more.

Then, when we returned, we witnessed what has happened with Jessica's GoFundMe and I about fainted. As I scrolled down the donation list, I could not hold back my tears. I know that many who will read this don't know me, so let me give some background. I spent a year in Vietnam 1966 and then tested the hippie world for a few years before a stint in a vegetarian lifestyle. On to logging, trucking cross country, then to Alaska and working on the oilfield in the Arctic for 14 years. I was not a man prone to tears, but in the last two weeks, I have probably drained 4 or 5 gallons of them. It's been a good cleansing, but has reached a point where I am having trouble shutting it down.

My first 36 years were defined by the fact that I was a great consumer of spirits. From that haze, I have been a very selfish and arrogant individual for a large portion of my 70 years. So through the travails of my daughter over the last 6 and 1/3 years and the incredible patience and forbearance of my beautiful and generous wife, I am finally learning to change. 

I thank all of you for helping "my little girl". I cannot express the gratitude and love that I feel; you have left me as a pool of Jello. There are so many of you generous, loving, and wonderful souls. I need you to know that if there is ever something I can do to help you, it would be an honor.

Also one last thing - Claire-Darth-Kendrick-Kat-Isabel (stars of My Last Days) - I could never thank you enough for sharing your unbelievable stories and your sweet spirits. And Jessica, how such a wonderful and beautiful young lady can be related to me, I do not know. You have all inspired me to be true and genuine going forward. The six stories that are shared by "My Last Days" on The CW Network has filled me gratitude. 

God Bless all of you (God being of your flavor) mine being JC.

Love and hugs to all of you,
Bobaloo

Extended Version Episode Online Now

Oh my god, what an emotional 24 hours. We watched our episode (and Kendrick's too!) last night, and even on the third time, yep, I cried. Then, this morning when we watched the longer version on the website, and you guessed it. Cried again. But it's so lovely!!! From the music, the editing, reliving that beautiful wedding, uuuuuugh, it gets me every time. I am so filled with gratitude to everyone, for all of the help that we continue to receive.

The other day Dan and I were driving, in a rush, and we had no traffic, and I was telling him that I feel like the luckiest person in the world. I feel like everything always works out, or that no matter what, we can find fun in any situation. Gold dust floats around our life, maybe it's dancing angels overhead - I hope so, I like the mental image. I don't know how we have been this blessed. Dan smiled as I was laughing in amazement of our continued fortune, and then he said, "You're right, except for that small brain tumor thing." And I almost wet my pants. Hahaha! Oh right. That.

I've embedded the full version of our episode below (last night's was an 18 minute clip), the full one is 35 minutes. If you would like to use a link to watch in a larger window (which makes a lot of sense), you can click HERE. The longer version helps fill in the backstory, and ongoing details. I love watching everyone, their faces when they show up to the "birthday" party, and the intimate interviews with my parents and Dan. Those are the tearjerkers. What a lovely life I get to live, surrounded by these beautiful souls.

The Premier

Meet the incredible cast of #mylastdays Kendrick, Jessica, Kat, Darth, Claire and Isabel. Tonight, we will make TV history as over the next three nights at 9 PM a @thecw, a massive television network is taking a chance in its programming and airing this three night special for one purpose... To inspire. I can't wait for you all to meet these six real life super- heroes. Please tell your friends, watch with people you love, and enjoy the journey because "you don't have to find out you're dying to start living" - Zach Sobiech. Here we go!!

A photo posted by Justin Baldoni (@justinbaldoni) on Aug 17, 2016 at 7:09am PDT

I could not be more proud to be a part of this series! I CAN NOT WAIT for you to see these souls, their stories, this amazingness. I am exhausted, my brain is killing me. We were up visiting with everyone from the premier until just past midnight. So I drugged myself and woke up at noon. That's laughable in itself! I never do that! My head has been splitting since I woke up, so I'm still in bed trying to see what I can take to not make my head feel like it's gelatinizing. I don't think I even made sense when with what I just wrote. The pressure in my head brings me back to the three different surgery experiences. Frick if I'm not losing my mind in pain.

Enough of my complaining. You guys, Justin & his dad Sam Baldoni, Ahmed and Farhoud and the whole Wayfarer family who produced this series have been so gracious. This experience has been more than a dream, more than a gift, more than we could ever have asked for. They produced these stories with pure grace, and truth, showcasing our individual stories perfectly. You will be uplifted, and inspired by these people. I can't even believe, I am not worthy, that I am included in this caliber of humans. Please share the information about this series, watching their stories has completely changed my life!!! I want that for you too!!!

I had reservations, very nervous as the premier and airing of the show neared, unsure if it would depict us accurately, but of the 18 minutes that I've seen so far, it is better than I could have anticipated. Just beautiful. The first episodes air on the CW tonight at 9:00 pm, then again at the same time tomorrow and my episode will be Friday night. I. CAN. NOT. WAIT.

We have a viewing party tonight in Santa Monica, which should show the full episodes, I believe, while you all will be able to watch the first two episodes. That should be Darth Vader, and Claire. I swear, you will LOVE it!!

Okay, Jess, shut it down and rest. Love you all, and thank you for spreading the word. Although the name My Last Days suck, it does not depict these souls whatsoever - you will be happily surprised. Justin did not disappoint!!

Bus Bacteria Bad. Brain Bacteria Good.

Hey Guys,

What is it about summer that causes it to go faster, and faster, and faster, until you lose your mind? Or get sick. I get sick every few years, and never in the summer, but lucky me, that's exactly what just happened. I must have licked my fingers after touching things on the city bus or something. (Gross!) But life doesn't stop when you get sick - kinda like cancer.

I'm busy with gloriously fun things like promoting the MLD docu-series with interviews, corresponding with tumor patients/caregivers, and visiting with out-of-town friends, all peppered with doctor appointments.

I'm not sleeping well because of headaches, which is a constant reminder of the fact that my brain tumor is growing again. I'm fine during the day, I'm so busy that I can't even keep up, but at night, as soon as I'm vertical, the pressure in my head grows intense. It's come to the point where I am back to relying on headache medicine. I hate having to do that. I'm grateful that my seizures have remained stable, though, which feels like a Christmas miracle.

I like to think that the headaches are because I'm doing too much, trying to conquer too many things, maybe I'm not organized enough, anything but the mass of rogue cells multiplying in the folds of my brain.

Last weekend I turned 36, and although birthday goals are a newer thing for me, I have it in my head that I want to live past age 40, and not be sporting a wheelchair/walker while I enjoy my cake (although decorating those items sound kind of awesome). That fear is based off of my horrible luck with brain surgeries. Granted the most recent one healed pretty well, but man if that second brain surgery didn't give me a run for my money.

Good God, I'm in a morbid mood. Must be the fever.

That doesn't mean I don't want to live a long life - obviously I do - I just want to make baby goals, which feel sustainable.

A famous Bonnie Birthday cake. Delish!

I'm scared for this next brain surgery, and unsure if I will do it at UCLA like my previous one. If I have to endure a 4th brain surgery, I want to make it count. Originally, the back-to-back brain surgeries in 2010 were at University of Washington in Seattle, then I wanted to do the clinical trial using dendtric cell therapy for diffuse astrocytoma which was at UCLA, so I headed down there. You may remember that after the surgery, I was told my tumor didn't meet the parameters of the trial (my tumor tissue was too integrated with healthy tissue). That forced me to Germany trying to get my own dendritic cell therapy. There aren't many clinical trials for my type of tumor, or grade, so we are forced to get worse before we can hope to get better. That's the system that I'm in. It sucks. So I need to continue my search for possible brain surgeons that are offering more than just a surgery. I want try something innovative, something more. I'm not sure if I'll find anything, but I kind of want someone to put bacteria in my brain.

Okay, I still have two more phone meetings tonight and I lost my voice, so before I lose all ability to think I'd better wrap this up. I do have more exciting news, though. Danny and I are being flown down to LA next week for the premier, and a showing of My Last Days. We get to go see everyone who filmed, and meet the rest of the folks that were featured. I can't wait! I mean, I can wait because I want to be healthy. Otherwise I might have to show up in a bubble so that I don't infect anyone. I will now power down my brain for a quick quiet moment. Sending everyone love, and thank you as always for loving and supporting us!

We All Need A Wizard

Dang it, why are there so many cool people out there? I just finished an interview with Refinery29, about the TV show, My Last Days. Yes, that is the horrible name chosen to document six different people diagnosed with a terminal illness, one of which is my story. It makes my body retch to even type it. I physically hate the title, with a palpable rancor, but I understand they're trying to gain the biggest viewing potential, and that potential could help people. It's all about pulling people in, about shock value. It's the world we live in. I just don't believe I'm in my last days. I don't describe myself as terminal, although that's exactly what I've been told. That I will die of this. But I know so much more than I used to. I know that a cancer diagnosis is a hopscotch of jumps, just to find a new treatment to outlive each phase. There are no guarantees in life, and that means we don't know what our life has in store, for example, when we will die.

So, anyway, the production company set us up with a public relations agency that's helping us understand the marketing/promotion process which includes doing an interview or two. Back to my point, I was partnered with one of the PR peeps, and she is a true wizard - one of those spirits that you instantly connect with. The Refinery29 interview this morning held the typical questions, When were you diagnosed? How has this impacted your life? My wizard had addressed all of us subjects in a recent conference call and one specific point resonated with me. I started thinking about what I want my message to be. If I can sum up my goal in discussing my cancer journey, what is my ultimate point? And in a conversation with my wizard, I finally figured it out.

Some people have to talk things out to solve their problems, others need quiet solitude. I tend to need to write. And prompting really helps. So, in talking to my wizard, I evolved. And that is what's really cool about people. Those folks that encourage, and engage, and spur us to harness our passion. And after free writing the email below, errors and all, I realized, in the most concise form as of yet, my true goal.

Good morning [Wizard]! Sorry for the delay.

I would love your input on this interview. I'm excited for this opportunity, but it definitely has me thinking about what I want to get across. And it's not as simple as I thought it would be. The message on my blog is about people taking control of their health, that we as patients are so much more - we're medical consumers. That we have control over the doctors and medical centers that we choose and that we deserve respect. That doctors are not rated equal, that not all centers can offer the same treatments. That you have to protect yourself, and advocate for your rights. That no one has more of a vested interested in their health then you. To not let anyone dictate when you are out of options, when you're going to die. I have no idea how the show will be edited, what they will focus on after several days of filming, my fear is that it will be more about my husband and my love story, which is glorious and magical, and unique, but I want to help people protect themselves. In 1970 1 in 30 would be diagnosed with cancer in their lifetimes, now in 2012 it is 1 in 3 for women and 1 in 2 for men. And survival rates are still dismal for most cancers. We have to prepare ourselves to be independent thinkers. Sometimes we need to hear that it's okay to ask tough questions, demand the best care, to not be afraid to ask more of our doctors. I'm not as interested in my own story, but maybe that's just because I'm so used to it.

Just writing this has helped me find my own direction, what I'm really passionate about. God, the things I've learned. I wish I could help people more. Just even the fact that when I don't understand test results, and my doctor's explanation isn't enough (as they are not trained in medical readings of scans), I will cyber-stalk the name on the report of a scan and cold contact them to get more answers on my scans. And the medical readers are always incredibly gracious, and I get better explanations of what's going on in my body. Or I'll research a new treatment, and again find the email address of the head researcher and cold contact them with questions about dosing, or side effects. Most of the time I get responses and enter in wonderful conversations. I then gain more resources as the researchers become colleagues, I can ask them further questions about related research. Sometimes I never hear back, and that's okay too - but I figure, what will it hurt? Might as well give it a shot.

I dream of a day when patients are treated with respect, not pitted, not talked down to, that we start to get treated like customers, because we are. We are paying customers with our medical, whether it's out of pocket, or paid for by our insurance. We should have more control.

Okay, that was one hell of a diatribe, and that was me trying to be minimal. Sometimes patients just need to hear that it's okay to question, to demand more, to realize that we're getting shoved into boxes with antiquated treatments. That we deserver personalized care based on our specific pathology. Nothing will change until we demand it.

Jess

In talking with others, those souls who provide a safe haven, a pure understanding and curiosity of another's plight, we are able to open further. To share the seed of our truth. And if you're really lucky, they not only nurture what's been planted, they rejoice as you flourish. My hope is that by sharing my experiences, the things that I've learned and continue to learn, it will help others find their truth. To not be afraid of the answers, of going out on a limb to find their best health.

I continue to be blessed by people that pop into my life, making everything I do more fun, more authentic, and I cherish them.

I feel more connected to others every day, and in that, I feel more alive.

From our episode on My Last Days

Surprise Wedding

I can't believe we pulled this off!! We just threw a "Surprise Wedding" for the most amazing and deserving couple. #tears #bucketlist #mylastdays2 #braincancer #livelikeyouredying #ittakesavilage (literally)

A photo posted by Justin Baldoni (@justinbaldoni) on Aug 15, 2015 at 5:48pm PDT

So Justin Baldoni, and Wayfarer Entertainment just helped me surprise Danny, and my family with a wedding. Everyone thought they were coming for my 35th birthday party, but when they arrived the film crew informed them to please take a seat for our wedding. It's a very long story and it has been incredibly hard for me to keep the secret. It was absolutely unbelievable with all kinds of surprises. Our episode won't air until January or so, and I don't know how much I can divulge, but in the meantime let me just give a few teasers: personalized message and invitation from Pete Carroll (PETE CARROLL!!!!), a gifted Nicole Miller dress from the upcoming 2016 line along with a hand written note, video messages, Vinny's catering, gorgeous flowers, Archie Brooks officiating. Dan and I have been legally married for awhile now but it has been impossible to do a wedding because of our financial responsibilities due to my ongoing medical treatments. The wedding was incredibly small, and I wished I could invite everyone, but Wayfarer hosted it (along with some amazing islanders donating various aspects). It was not our money, so I was just grateful for the opportunity. When people give you gifts you just say thank you, you don't ask to see if you can invite more. It was such a gift, and a beautiful dream that we had always wished for. There were beautiful toasts. There were songs sung, dancing, a little rapping, beautiful toasts, it was hilarious and heartfelt. I can't believe I was able to surprise my parents, Danny, Linda, and all of our guests. It was the most fantastic day!!

The love I have for Danny is the most special thing in my life. I can't wait for the television show to air so that people can celebrate in our love too. They took hours and hours and hours of footage, and I hope I get to see a copy of people's interviews and responses. The whole point of us sharing our story is so that other people can learn from our experience with cancer, that it could help people. 

The crew was absolutely amazing, wonderfully kind. They are kind souls with huge hearts. It was an honor to be chosen for this docu-series, and I hope it really helps people. Wayfarer Entertainment gave me the beautiful wedding, but what was even better is that they helped me keep it a secret to surprise Danny and our parents, and all of our friends. That was a gift that I got to give them. Danny was over the moon, along with our friends and family. It was the most heartfelt evening I've ever experienced. 

And the biggest thanks is to Libbey & Nige for letting us commandeer their new house which they have lived in for only two weeks. Talk about great friends! That was probably the most magical part of the entire day, that we are so loved by our friends. We are the luckiest people on earth to have such generosity and kindness. I'm still reeling from all of the excitement. In fact, it should be sung from the mountain tops how amazing Becki Day is. She is a complete rockstar wedding planner, problem solver, and connector of people. Without Becki Day navigating this event, it absolutely wouldn't have happened. Who in the world plans a wedding in Friday Harbor in early August, the busiest wedding time of the season, in only two weeks?!?! Two weeks! And it was stunning and seamless. I can't say enough about her work ethic and attention to detail. What a treat for us!!  

I'll be sleeping until Wednesday so that I can manage my flight to NYC for my immunotherapy. I'm exhausted. In fact I don't even have a voice, I literally lost it. Hopefully I can rest up and start feeling better within 72 hours. Talking in interviews, emoting and going all the way back to the beginning of this journey to review our trials, was exhausting. 

Okay time to sleep. Love and thanks to all. And I'm so sorry that we couldn't invite everyone. It hurts my heart that we had to keep it small, but sometimes that's the only option when you have such a huge network of friends, and supporters.