Sunday, October 27, 2019

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 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,

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.

Thursday, August 29, 2019

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!

(The following has been copied from her 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.”

Wednesday, January 30, 2019

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!

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