hattiestrong- part one.

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They say that to write is to wrestle with your ghosts. And that’s unpleasant, no matter how fresh the “ghosts” may be. But I guess I knew I would have to sit down eventually, write out our story, so that I can have more than ramblings in a journal or a stupid social media app to collect these moments for Hattie when she’s old enough to read them.

And yes, when she’s old enough. Because we are refusing to declare anything less than full life and healing, despite the fear that comes with the word cancer. During our first five week stay here, I left one evening to go home. The air was warm and the colors were starting to merge in the sky- pinks and yellows and oranges. These are the moments that tears well up, when you’re hit with air that is not trapped within hospital walls. I started to plead with God in prayer and I felt an overwhelming sense of a need to pray beyond this-- for her first day of kindergarten and her future high school boyfriends-- and I’ve just held onto that feeling, even when fear and doubt creep up. Praying beyond this. Joy in spite of this. It feels like the only way you survive each day.

But this is a story in the making- one that will be worth telling- one that already is worth telling- and so, because of that, I am obligated to start at the beginning.

The question I get often is this: how did you know it was cancer? But, like almost every other parent dealing with this *not rare* turn of events, we didn’t. No clue. I took Hattie to the doctor while on vacation down in Santa Rosa and one thing led to another. I was wearing what I slept in, fully intending to be at the beach by 10 A.M. I got up after barely sleeping and (after a few persistent pushes from my wise mother) drove Hattie to the closest children’s urgent care. She had been acting unlike herself- weak, lethargic, and was on day three of a low grade fever. I had called my pediatrician earlier in the week and they said if she had a fever for three days to take her in-- so I did. I thought we would grab some medicine and knock whatever was holding her down out in a few hours. I was mainly annoyed I was missing out on my tan. This had been a rough week of vacation for my family-- almost everyone had gotten a stomach bug or fallen ill in some way-- so it wasn’t “totally weird” that Hattie was acting sick. What we didn’t expect was to be sent to the E.R. from the Urgent Care. Then to be at the E.R., Hattie screaming and exhausted because no one could get an IV in her -- only to (again, to our total shock) be told they were going to transport us via ambulance to the closest children’s hospital in Pensacola. I had lost it-- and a nice emergency vehicle driver walked me around outside to calm down while my mom waited with Hattie-- we got on the ambulance knowing only that her hemoglobin (red blood cell count) was at a 4.3 and that. was. not. Good. Once at the pediatric E.R., the IV debacle only got worse and finally after team after team tried and failed, an anesthesiologist who remains my hero kicked my parents and I out and got that IV in. This was the only way to give Hattie a blood transfusion which she obviously needed. We finally got admitted to the PICU at almost one in the morning.

Three blood transfusions and a flight home from Guatemala later (Andrew came back from a grad school summer practicum of course!), we were transferred to the oncology ward-- her initial blood tests showed no signs of leukemia. We stopped worrying about cancer pretty early-- it never really crossed my mind again. We were finally able to be transported (by ambulance-- again) to Children’s Healthcare of Atlanta because they would only take Hattie on as a patient inpatient to inpatient. After a 3 A.M. arrival time, we were discharged at 10 A.M. (thanks for that unnecessary bill guys), because Hattie looked great and her counts were good. Two clinic appointments later in the week had everyone assuming she had something called TEC. If only that had been the end-- it was just the start.

A few days later, Hattie again had a persistent fever. We went into the E.R. and now her white blood counts were low-- so they scheduled a bone marrow biopsy. Less than 24 hours later, we were called to re-pack and come back in because Hattie had leukemia. We were shocked- but not too shocked- honestly we were just tired of wondering what was wrong when everything had been fine just weeks before. It was the worst answer we could get, but at least we had an answer.

We arrived and were told we would be inpatient for at least five weeks. Hattie would get a week of steroids and then 22 straight days of chemo. She was diagnosed with (Infant) B-cell ALL. The infant is important because while her cancer was genetically devoid of some pretty scary gene mutations that lower the chance of infant survival and in fact looks much more like standard ALL, her age designated us a “high risk”. Aside from age, in cancer world, we seemed to be getting good news after good news. Suddenly, in the hospital, we were starting to feel like the fortunate ones where outside of those walls we had felt isolated. We spent five weeks and Hattie had zero chemo related side effects (some mood swings and fat cheeks from steroids) and honestly, we had a pretty easy ride. After five weeks, we went home and a week later got the news that Hattie’s bone marrow was clear putting us technically in remission. This was (and is!) amazing news. But for childhood cancer, remission is only the start of an ugly journey.

We got re-admitted for round two and a drug called methotrexate. It rocked us-- and we are still digging out of the trenches of sickness it caused sweet Hattie. Her skin basically turned into a giant rash and her GI tract one giant ulcer. She is (after two weeks) being weaned off high dose pain meds and IV nutrition because she couldn’t eat. It shifted everything. Where we were unwavering in confidence and hope, we started to despair. Where we were walking in confidence, we started to feel crushed by the weight of this new life. Don’t Google anything. Ever. All the stats for childhood cancer and the horrible chemo drugs used are horrifying. There has to be real change. Almost 100,000 kids die in the world annually from cancer-- but often those deaths are attributed to the toxicity of chemos made for adults. Childhood cancer is overlooked on all fronts of research and awareness. And yet, 46 kids in the U.S. were diagnosed today. That has to change.

We are almost three months into our cancer journey and it has already flipped every single thought and priority we had for our life over. Spilled out our complaints. Knocked over inflated senses of pride. With cancer, you are living in the tension of life everyday. And of course, we all are there anyway. Anyone could get in a car crash at any moment. We are all not promised tomorrow, or even tonight. But cancer makes it feel real. It makes you think about your emotions constantly and have to show up and do normal life and be civil when you just want to scream and run away.

This is just the start. And despite our daily feelings, we feel confident in Hattie’s healing. We know she was made for more. We feel it. The world needs a full life of Hattie Harrison. So, we wait. We buckle down on prayers in hospital rooms. We find joy in days that feel so far from what we think we deserve. We laugh. We dance. And tomorrow we’ll do it all again.. For Hattie.