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!

View this post on Instagram

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

Medical Update

Thank you for being understanding and patient! I've been very private about the status of my health, but what I'm learning is that me not blogging hasn't removed the questions, the texts, the emails. So I'm thinking it might be easier to revisit the blog updates, that way if people want to know what's going on, they can read the blog, and even comment if they choose to, but hopefully I won't be asked so many direct questions all the time. I've learned that I really value the times I get to live without my cancer always getting brought up in social situations.

Since the most recent brain surgery on 3/3/17 I have been doing regular MRIs, as we track another brain tumor. Radiation and chemo have been recommended at each appointment, but I have declined so far. Now, since I do my MRIs locally in Seattle, then upload them to UCLA's brain tumor board, the only results that I receive is the radiology report from UW. I get zero feedback from UCLA. They don't call, they don't send a report, I just read the official radiology report and compare it to previous MRI reports and make my own decision on whether or not to completely panic or not (ha!).

After reading that radiology report, I wanted to vomit. My entire heart dropped to the floor. It was scary, and I immediately believed that the tumor had grown significantly. I saw, "interval enlargement" and "additional areas" and my head started spinning.

Then I saw dan walk over to a comfortable chair with his phone. I asked what he was up to, and he said he was trying to pull up previous rad reports to compare. (He's so smart!) So I logged into my UW portal that holds all of my medical reports, and we sat there while I dictated the tumor measurements from all the previous reports while Dan wrote them down.

The MRI scans are set at 3 mm slices, so any slight movement of my head 

(which is impossible to avoid) skews measurements. 

So there is no way to get exact quantifiable results with an MRI, it's more of a window.

After comparing measurements, I felt more comfortable. It's never easy living with the knowledge that there is a mass in my brain (possibly, according to the rad report, three masses), but I also feel strongly that I am going to make health decisions based on what feels good to me, not what is expected of me. So basically I'm flying by the seat of my pants. (Kidding, but not kidding.) I'm still doing some treatments, drugs, foods, lifestyle choices, but it all has to line up with my ethos. 

So there we have it folks! A solid, raw, technical health update. Now Emma and I can get back to gardening!

2018 Update

Hi blog readers,

I took a necessary hiatus, and truthfully I’m not sure how much blogging I will continue to do in the future. I’ll have to feel it out.

I have been focusing on my brain surgery recovery. I still have various therapies several times a week, and I'm trying to enjoy my life as much as possible. I have several new deficits that I'm trying to correct, but it's a lot of work, and headway has definitely slowed.

I became very overwhelmed with this last brain surgery. In fact, there were some unexpected and damaging events that are taking me a long time to process. When I get severely overwhelmed, my whole body starts shutting down. Since I’ve been living with these brain tumors, and experiencing surgery after surgery, the stress created an autoimmune disease called Hashimoto’s Thyroiditis. From the advice of my various doctors, and specialists, I chose to stop the blog, and stop social media including emails and texts. 

Over the past several months I also had my DNA sequenced, and the most interesting finding is that I have two mutations on the same gene (one from my mom and one from my dad). These mutations are on the genes that detox stress hormones (like cortisol). Instead of being able to hear stressful things, witness stressful things, or experience stressful things, and process it out of my system, my body just keeps recirculating all the damaging hormones for weeks, or even longer. Because of these two mutations, I can feel the stress hormones in my body. I have anxiety attacks frequently, I get stress rashes, hives, and rarely sleep through the night. The circulating stress hormones do a number on my quality of life. But the most damaging aspect is that it causes the release of inflammatory cytokines that feed cancer. So anything that is negative, or hurtful, or overtly aggressive, or even perceived negativity, triggers a cycle of debilitating anxiety, and tumor growth. Stress literally kills me, it's written in my DNA.

I’m trying to mitigate my stress response, and release stressful things in my life, but I have a lot of internal fear and anxiety already. I have regular nightmares about my surgeries, and I still have a lot of physical and emotional pain. Because of all that, I have had to completely change my life.

I really appreciate those of you who have been patient and loving toward me at this time. And to those of you who voiced frustration, you are exactly why I had to protect myself from unkind, hurtful statements. 

I started this blog to keep my friends and family abreast of health developments. I could never have imagined it would bloom into a massive web presence. But at the core of this blog is just me. I’m just a woman trying to navigate her life as she lives with MRI after MRI, brain surgery, after brain surgery, after brain surgery, after brain surgery. And as if the demands of normal daily life weren’t enough, I have to find a way to remain positive in a nearly impossible situation.

I have been very fortunate to have so many kind, thoughtful, and special people that I have met along this journey. I hope to continue to blog, but I have to put my health first, even when it upsets people. I wish I wasn’t so sensitive, but so far, I can't seem to be able to adjust that aspect of my personality. I hope you can understand, and that no one takes my choices personally.