girl drew

You know how sometimes things work out perfectly with no loose ends and complete closure, like a beautifully wrapped gift with a bow on top? And other times you cut the wrapping paper just a tad small and are too stubborn to waste it, so you begin piecing together a patchwork of paper to hide the gaps that show what’s inside? Then, next thing you know, the present looks more like papier-mâché than anything, but you feel like you invested way too much time in it, so you decide to give it as-is and tell yourself the person is an ungrateful punk if the hideously wrapped box detracts from what’s inside? Well, we saw the hematologist/oncologist today, and let’s just say the information we received wasn’t wrapped by a professional at the mall who uses double-sided tape. Instead, we got news that was more fragmented than we’d like, but we’re thankful nonetheless. Ramon’s recent bone marrow biopsy showed some remaining abnormalities, but nothing too alarming. He’ll have another biopsy in a m...

Yesterday afternoon, I cozied up in bed with the dogs to do a meditation. Let’s be real; we all know that’s the prelude to a mid-day nap. When I woke up, I looked at my phone and quickly realized that the day had come: the FDA approved a treatment that will benefit a significant part of the cystic fibrosis population. Yet, as someone grateful enough to have been in the study for it, I knew that it simply didn’t cooperate with my liver . “Your liver looks perfect,” the hepatologist said after reviewing all the follow-up tests done to try to determine the reason for my elevated liver enzymes. “There are no underlying issues that could have caused this; it’s the drug.” As the doctor delivered the news, a masked, immunocompromised Ramon sat across from me, halfway through his first round of outpatient chemo. As I looked down on this situation from above, I thought to myself, 'This is kind of hilarious. Even a sitcom writer would know it's just too far-fetched to make both of us s...

I recently borrowed a memoir from the local library. It caught my eye instantly because it was called Marrow , a word that entered our vocabulary uninvited in May – without even a gentle knock. The book’s author, Elizabeth Lesser, is a perfect match for her sister who needs a bone marrow transplant. The sisters want to have the best possible chance for transplant success, so they quest to understand each other – and themselves. Much more than a book about a bone marrow transplant, it’s a book about love, about soul, and about life. Though I have only a few chapters left, I am reading as slowly as possible because I don’t want it to end. I keep thinking about a passage from the book, so I wanted to share it. There are so many amazing parts that it feels almost criminal sharing just one, but I’m a little rebellious, so here goes: We come into the world a potent little acorn, a distillation of the oak we were put here to become. The ego fears it is less than others, or it strives ...

October 10. 10/10. That sounds like a date filled with promise, doesn’t it? It’s clean and round and associated with a perfect score. But, as a Braves fan, I have bad memories of October 10, and those are extra poignant today. The year was 2010. I was supposed to be getting outpatient sinus surgery (my third) on October 11. However, a week before surgery, October 4, I got a phone call from the doctor informing me that I’d cultured a new, difficult-to-treat bug. For those who aren’t very cystic fibrosis savvy, this meant that there was a new type of infection in my lungs: one that I’d heard about – and not in a good way. The doctor now wanted me admitted to the hospital several days prior to surgery to get a handle on this infection. There was a problem, though; I had tickets to see the Braves vs. Giants in the NLDS playoffs on 10/10/10 – what promised to be a lucky day. I reached out to the surgeon’s office to see if there was any possible way to reschedule surgery. I’m looking at ...

We saw the hematologist/oncologist on Monday and stopped by the healing garden. Though I believe in the garden's restorative powers, they're apparently not strong enough to fix someone's refusal to cooperate for photos. But hey... I'll settle for questionable smiles if the garden focuses on the leukemia. Despite our brief hospitalization last week/weekend, Ramon is feeling better every day; we're extremely grateful for that. Next up on the agenda is a bone marrow biopsy, which is scheduled for next week. A big part of me was hesitant to share this because it is a very significant (and anxiety-provoking) test. Then I remembered it is a very significant (and anxiety-provoking) test, and we could use your support. So, in the coming days (and weeks as we await results), muster up some positive energy for us. We will be sure to update you all when the time is right. Most importantly, and the real reason for my post, is that I want to shed light on someone else...

It has been 149 days since Ramon's leukemia diagnosis and 148 days since we learned the type: AML. On the exact same day, May 8, 2019, across the country in California, a single mother, Corrina Santacruz, was given the same life-changing news. I stumbled upon her story on Instagram and have been following her parallel journey. Corrina is now in need of a bone marrow transplant, and her ethnicity has made it difficult for her to find a match. Check out this NBC Palm Springs article that shares her story: https://nbcpalmsprings.com/2019/09/29/mother-fighting-leukemia-with-special-needs-child-pleads-community-to-be-her-match/ . White people have a 77% chance of finding a donor on the Be the Match registry. However, these percentages are much lower for people of other ethnic backgrounds. Latinos make up only 11% of the Be the Match registry, hence Corrina's inability to find a match. It's as easy as a swab of the cheek, and it could truly save someone's life. Please consi...