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so much more than a haircut…

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.

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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.

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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.

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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.

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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.

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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.

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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.

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So he very clearly said “no,” and they got back in the car with his beautiful curls untouched.

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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

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