Tomorrow we will walk into Lucile Packard Children's Hospital for what feels like the 500th time. We will smile to the valet who recognizes us, wait patiently as others try to figure out the security badge requirements (though we just slide our IDs, and our badges print out); we'll peek in on the Bass Center, where all the kids receiving chemo are safely sequestered behind heavy doors, and walk into the oncology waiting room, where we have spent hours waiting, chatting with the office staff. It's a familiar, comfortable and reliable place for us now. But it was not always that way.
Two years ago tomorrow, we did this for the very first time. We drove into the parking lot, jumping out of the car before my mom had a chance to park. It was dark, and the hospital was lined with lights, including the large animal topiaries that sit out front. We ran into the entrance, soaked from the rain, breathlessly asking the security guard where we would find our daughter, who was brought in by ambulance. The signs, filled with unfamiliar abbreviations like NICU, PICU, PACU, Hem/Onc, led us to her. We were overwhelmed, nervous and downright scared.
That night, we were shown, for the first time, the massive tumor that was killing our child. The first sight of it was on a neurosugery resident's iPhone, accompanied by the now-infamous "impressive". That night, Scarlett had her first CT scan, her first MRI, her first IV, her first anesthesia and her first night in a PICU. Looking back, I could never have imagined how routine those things would become.
That night, Chris and I were also accused of child abuse. As far as we have come, I can still never shake the horror of being suspected of something so heinous. The doctor who reported us and the social worker who interviewed us were just doing their jobs - they were not skilled at reading CTs, and when they saw what they thought was bleeding, they reported it, just as I would as a teacher if I had a student who came in injured. Nevertheless, I wish that the system could have been flexible enough to avoid the many phone calls and the home visit we had to endure later that week.
Over the next few days, we were told very plainly that our daughter was going to die. We were told exactly how it would happen, and what we would see along the way. We were given a time frame of a few weeks, maybe a few months. There was absolutely no hope.
We know now that there was a chance. Scarlett was always meant to be much more than a statistic.
Since then, we have changed. We have learned so much, both encouraging and harrowing. We know the signs of increased intracranial pressure. We know how to give injections at home, how to handle chemo without exposing ourselves and how to identify the need for blood transfusions. I can watch someone vomit without even blinking an eye, and clean it up, too (this particular skill has already been tested by my kindergarteners). We have learned that we can handle an inordinate amount of stress and still laugh together. We know each others' strengths, our breaking points and how to rely on each other in a way we never had in the first 9 years of our relationship.
When we walk into that hospital tomorrow, I will go with hope. I will go knowing that she has overcome so much, and continues to amaze us every day. I will walk in with confidence in the doctors who have worked so hard to save her life, and faith that they will continue to fight for her just as we have. I go there with all of the experience we have gained in the last two years, both of the good and the bad, and knowing that as hard as it will be, we will make it through. We have done it once; we can do it again.
Dear Brandy, I and my wife experienced the same horrific story. Giovanni was born on 18th of Sept 2011 and he had hemorragy at birth, then 7 days after they told us he was in peril of death so he went down on craniotomy, which outcame with glioblastoma. We had 4 heavy chemos plus 2 cycles of HD chemos (Thiotepa + thiotepa and carboplatinum). He finished last treatment on february and now he is very well. I am not a doctor, but I think that the most effective way to eliminate cancer stem cells (the real menace, no exam can detect their presence) is high dose with autologous stemcells transplantation. They are hard and very probably caused epileptic crises to Giovanni (now epilepsy has disappeared) but if tumor came back to Scarlett I think it would be a weapon to be considered. I think Scarlett will overcome also this problem, just some months more of fight and she will be free. Merry Christmas from Jacopo and Sandra, the baby is strong
I get so tired of not having the words to express my admiration, my gratitude, and my love for you and your family. So I will just tell you again that you are all in my thoughts, and as you fight I will continue to hope with you on the other side of the country.
As Jen said, we always dont have words to express our admiration, gratitude and love to you and your baby girl... I will certainly be praying for you from the other side of the world... I wish you all the best...
Wow, what a fight you had. Thanks for sharing as I had no idea the amount of stress you went through in the beginning of this journey. Being accused of child abuse must have really hurt.
Praying for all of you as you start this part of Scarlett's healing. Praying and praying for Scarlett.
I simply can't imagine what the past two years have been like - the joys and sorrows you and your family have endured. You all are in my prayers.
Don't ever give up. Praying for a miracle...
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