Huck and EZ have been hanging out together every week since they were 6 months old, and their babysitter would walk around with one of them strapped on her front and the other one strapped on her back.
Now at age four, the boys share a mutual love for Star Wars and Legos… preferably Star Wars Legos.
In the weeks since EZ was diagnosed with cancer, the boys have only seen each other two times. And that has been hard on both of them.
So when the time came to decide how to deal with EZ losing his hair from chemotherapy, the moms agreed that the best way to help EZ feel better about shaving his head, was for the boys to shave their heads together.
And seeing as Huck had always wanted a buzz cut, this seemed like the perfect plan. So we had our date scheduled. Celebratory hair cut presents were purchased and wrapped. I arrived and picked out the best spot for light in front of a big beautiful mirror. The hair stylist arrived and we were all ready.
But when EZ arrived, we learned that he was in a lot of pain and he was not having a good day. It became very clear, as Huck was in mid-shave, that our perfect plan may not work out the way we imagined.
The adults tried to reason with EZ, letting him know that shaving his head was a much better option than having his hair fall out in patchy clumps every day.
But it wasn’t until I was driving home that I could really understand how this was about so much more than a hair cut for this four-year-old little boy. This little boy has had his life turned upside down and inside out… he can no longer walk, he can not use the bathroom without pain, he hasn’t eaten in days, his bones hurt, he gets poked, prodded, taped and needled every day.
And in the middle of all this change, he lost his father, the only person who had ever given him a hair cut in his life, to a heart attack. It makes perfect sense that the last thing EZ wanted was to shave his head.
So he very clearly said “no,” and they got back in the car with his beautiful curls untouched.
Despite the tough morning and the head shaving protest, Alex did have some very good news to share about EZ’s progress with chemotherapy. Since so many people have so generously sent their love and support to this family, I wanted to share Alex’s update:
EZ’s last two scans reveal that the chemo has currently stopped his cancer from progressing. It has also reduced his tumors by 50% in size. This is a good start to a very long marathon of treatments that EZ will endure.
Dr. Month, EZ’s oncologist, shared that while his lungs and spine look worse to the eye, the bones will take the longest to heal. His lungs just look worse because he had a chest tube (from original biopsy) and he just got over a terrible cough and cold.
She reminded us of how important keeping him in his little Frida brace is, so his spine is protected. Meanwhile, we are pumping him with bone broth, probiotics, wheat grass and other homeopathic remedies.
To all sending your distant healing and prayers, we are deeply grateful and thankful for each and every bit of support, hope and love we are receiving. The children and I, as well as our extended family, are missing Roneil deeply. EZ is very clear on what has happened and shares that he misses his dad everyday. LU also is being very expressive and sharing her grief. We are pursuing different grief support measures.
A million thanks to all. XO, ap
Now Sonoma Valley Wine wants you to know the people behind the good wine and food of Sonoma County…
Karin Warnelius Miller and Justin Miller of Garden Creek (left).
Jake Bilbro and Scot Bilbro of Limmerick Lane (right).
Look for a fun new campaign coming soon, brought to you by Sonoma Valley Wine and The Idea Cooperative and photographed by me, with lots of styling and reflecting help from Morgan Bellinger and Debbie Wilson.
It was a bread-full week. Many thanks to our wonderful team: Peter Reinhart, Katy Brown, Melissa Moore, Karen Shinto, Jeffrey Larson, Tessa Watson, Alexis Scarborough, Morgan Bellinger, Debbie Wilson, the folks at Central Milling, Kendall Jackson and Craig Ponsford. I can’t wait to see all our hard work printed and standing proudly in bookstores October, 2014.
Just when this family had returned to their home from the hospital…
And just as they were starting to come to terms with what their new life would be like fighting the rare form of cancer that was discovered in their four-year-old son…
Ron Powell, EZ’s father, died suddenly Sunday morning on February 2nd, 2014.
He died in his sleep, with his family around him. They believe that he suffered from massive cardiac arrest.
Along with the entire West Marin community and anyone who knew Ron Powell, I am in complete shock and utterly heartbroken for this family. Ron was an incredibly kind person, with a beautiful smile and he was truly loved by everyone.
Please consider helping this family, as they now face an even harder road than they could have ever imagined possible. Ezequiel still has a long fight ahead without his father’s support.
And on top of learning her four-year old son has cancer, and then two weeks later losing her best friend and husband, Alex has to figure out how to financially support her family while remaining strong for both children.
Overcoming this nightmare seems impossible… but there is hope… over 30,000 people have visited this blog post in the past two days… if every person donated just $10… that would be an incredible gift of love and financial relief for Alex, Lu and EZ.
Donations can be made via PayPal or at any Wells Fargo branch by referencing the RONEIL POWELL MEMORIAL FUND. Please denote “Gift Donation” on your transaction. The Federal Taxpayer ID # for the Roneil Powell Memorial Fund is: 46-4722983, Wells Fargo, County of San Francisco, Ca.
The RONEIL POWELL MEMORIAL FUND was established for the deposit of gift donations by the community for the sole benefit of the Powell/Porrata Family during this cancer crisis. The RONEIL POWELL MEMORIAL FUND is not a California 501(c) nonprofit organization. Please consult your financial professional for tax advise regarding your gift.
Thank you for sharing this post and for supporting this family. Now please go tell your family you love them, because life is insanely short and it doesn’t give you any warning… the majority of the above photos were taken in March 2013… less than one year ago.
But it is another thing to create a blog post every day.
And after one month of daily blog posting… I have learned that it just isn’t sustainable (for example it is 3:38 am and I am still working on this post.)
This 365 project has showed me that having to photograph my life and then share it every day does not feel quite right…
I have worked hard over my life as a photographer to keep some separation between my personal life and my work.
So while I would like to continue to try and take photos every day… I may not share those photos.
Partly because my life just isn’t (this) photogenic every day…
And partly because I commute for work several times a week…
Which leaves me photographing during the very few (very dark) hours that I am home…
Which means that after a year of photographing every day, I will either have a very complete series of HAH in the bath,
Which will upset my Midwestern Grandfather, who already disapproves of the amount of times HAH is not wearing clothes in photos.
Or I will have a very repetitive and tiresome series of HAH sleeping… especially since I am not creating incredible themes around his sleeping body and I can’t convince Arann to let us get a puppy so I can take cute photos of them sleeping together.
The good news is that now that I am blogging again… I hope to keep that momentum going, maybe even once a week.
And I am very grateful for all the encouragement I have gotten from people who have visited this blog.
It is because of all the kind words I received that this resolution has lasted much longer than any of the other resolutions I made.
But now it is time for me to take a break…
And I look forward to sharing again when I feel like I have something really awesome to share.
I wish I could say that having pets and access to a farm has made our child more loving and sensitive…
We try to tell him to be nice to them, because they give us the eggs we eat…
But that is not enough to overcome his love of the chase.