My 10 yr Cancer Anniversary

Today is my 10 year DD (diagnosis day). I know I'm not very good at sharing my health status, or managing my social media, but there is such a beauty, and safety, when you slow your external life. Not much has changed with my health, I'm still navigating cancer, and jumping through health hoops, trying to follow my intuition, and fighting for what I feel is right for me. There have been plenty of scares, disappointments, bad news, and I have turned down several treatments as I continue on this journey. Currently I'm hoping that an experimental drug will keep my tumor at bay.

I am sorry that I can't be as open as I used to be, but I want you all to know how grateful I am for your kindness, support, and patience over the past 10 years. I remember hoping for 5 years. Then hoping to survive the 4th brain surgery. I truly can not believe that I am sitting here, 10 years after being told that I had a "massive brain tumor" and that the doctor "wasn't sure if I would live."

Especially today, I keep thinking about how grateful I am to be here on Earth, in this human body, able to smell the spring flowers, to see the little sprouts popping up from our vegetable garden. I can't believe that I'm here - that I'm alive. There is so much wonder and mystery in this human experience, and I get to be here to witness and participate. What a monumental joy!

Since these are unusual times, with necessary adjustments to daily life, instead of celebrating with friends and family, I woke up at my usual 6 am, wandered toward the kitchen to start the kettle for our French press, expecting to get a few moments with Dan before he would head out for work, but instead, the house was lit by candles, with handmade cards. It was magical, and romantic, and very unexpected. He had taken the day off, to celebrate our life together. To acknowledge the hard work that I (we) have put in, the sacrifices I (we) have made, the memories that we have created, the life that we get to relish in.

As an immune compromised human, I'm scared of any threat, let alone this pandemic, so I have been in self quarantine since February. I rarely even go for walks because the few times that I've tried, there's inevitably random runners that sweat past me causing great anxiety (valid or not). But, as I was watering our vegetable garden this morning, all of a sudden there were SO many car horns! And as I rounded the corner, I saw a literal parade from my girls in the Edmonds Walking Group (see the video below). Dan barely managed to grab his phone to record part of it. These ladies are angels. I honestly don't know what my life would look like without them. I learn so much from their prospectives. We laugh, they give me a lot to think about, and they're gracious considering I'm opinionated and often naive. They have taken care of our house, and our pets, during brain surgeries. They even mended our garden, mowing the lawn, making everything better. These women treat me as an equal, and help me feel strong and capable even when I feel that I'm not. I love that we take care of each other. And as they paraded by our house, three times in a row, beeping all the way, I laughed gratefully, as my heart continued to mend from all of the hidden pain that I've tried to ignore. 

I don't know why I get to live this fabulous life, but I'm so very grateful!

Update on Isabel Bueso

Thank you so much to all of you who have spread the word about my friend Isabel's situation regarding her immigration situation. In fact, there are currently almost 200,000 signatures on her change.org petition! In case you aren't familiar with my sweet friend, here's her episode from the show My Last Days, which is how I met her in the first place. I will also post my episode at the bottom of the page.



Here's a little update...

SEP 12, 2019 — 

Isabel went before the House Committee on Oversight and Reform today to tell her story and to continue pushing for Congress to find a solution to protect her life and the lives of thousands of people affected by USCIS’ denial of medical deferred action petitions. Speaking before a panel of Congresspeople, Isabel urged “This is not a partisan issue. This is a humanitarian issue. I ask Congress and the Administration to come together and right the wrong of this change in policy.” Watch the full testimony here starting at 28:25.

Our campaign to #SaveIsabel continues to gather momentum and we are gaining the ear of many powerful people on both sides of the aisle in Washington D.C., but we still need your help to make sure that we are able to achieve our goal. Currently, members of the House are working to pass a bill to protect Isabel. We are also hoping to find a path forward that will help all families. In order to make sure we are able to get this legislation through, we ask that you please contact your Representative and urge them to support the push to #SaveIsabel.

Many thanks,

#SaveIsabel

OCT 17, 2019 — 

Senator Dianne Feinstein (D-CA) and Senator Lindsey Graham (R-SC) have introduced a new bill, S. 2612, for Isabel and her family to become permanent residents. This is remarkable and is a direct result of the public support shown to Isabel and her family. We are all grateful to Senator Feinstein and Senator Graham. Congressman Desaulnier previously submitted a similar bill for Isabel in the House, HR 4225.     
 
The support for Isabel also lead to US Citizenship & Immigration Services’ reopening the denials and reinstating the medical Deferred Action program.  However, there is still no official word on the medical Deferred Action extension approval for Isabel or any of the other 420 people who received medical Deferred Action denials in August.  A House hearing on this topic was cancelled today due to Committee Chair, Congressman Elijah Cummings' passing. We are hopeful that the hearing will lead to the resolution of the medical Deferred Action extensions by the US Citizenship and Immigration Services. 
 
Thank you again for all your help. Your support has helped us #SaveIsabel.

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