April 30 - Day 1
I remember April 30th so vividly. At the same time only fragments of conversations, moments and people that came into our lives that day, and changed everything. I guess that is what trauma and grief does to someone.
Sheldon stayed with Paige, while I drove to the Children’s hospital early Friday morning. On the drive, worst case scenarios flooded my head. I kept trying to recall the biology classes I took in University. It still didn’t prepare me for what all the doctors were going to say.
When the doctor leaves the ct scan before it’s even finished you know he’s rushing to get a team to come down to the emergency department. When the doctor accompanied by a social worker takes you into a private room to review the results you know it’s not good.
When the doctor says, “I’m going to take off my mask to tell you this, because we found a significant mass - and based on the size we believe it has been there for quite some time, possibly since she was born.” When you call your husband about the news you received and to make your way to the hospital as soon as possible.
When in the span of four hours you meet teams from emergency, radiology, neurology and ICU. Then you’re asked to read, review and ask questions before signing a consent on a high risk craniotomy to remove your daughter’s tumour. When the neurosurgeon tells you there is a high risk she will lose a lot of blood because she’s so young and tiny. When the neurosurgeon advises you there’s a 50% chance of her living with a shunt. When you ask questions if she will survive, or will she even remember mom, dad, her sister after surgery. When you sign the consent form and pray that everything will be ok.
When you have to break it to both sets of parents and all your siblings the news and trauma your family endured today. When you ask your family what you’re doing right now, because you may want to sit down for this.
There are moments we still look back on April 30 and think it must be a horrible nightmare. Then we realize this is our new reality. We were told on day one this is not a sprint, this is a marathon. We have to take care of ourselves, so we can take care of Paige and Penn. So easy to say, not easy to do.
Here is where we tell our story as our family is now on a journey we never expected. Despite it all, we are focusing on our wins, rather than our losses. This is where you will find the latest updates on Penn the Brave, who is the strongest fighter, warrior and resilient four year old we know. And we are so proud and lucky enough to say she is our kid.