Who we are resides in spirit, that’s a thought worth holding onto. But modern science thinks the brain is where we reside. Our intellect, personality, emotions, memories.
I’ve never faced anything more terrifying than consenting to our baby girl to go under the knife for brain surgery.
While most of the world was celebrating the most symbolic new year in decades, the first week of January 2021 was the longest one of our lives.
We had hope though, this surgery had a 75 percent chance of making her seizure free. Life back to some kind of normal.
January 6, 2021
We all put on a brave face at 5 am on the way to the Stollery. But Vera was truly, impressively brave. I recognized then that this young girl of mine is a force of willpower and strength.
Kelly and I spent the day in the Stollery atrium, and it was an eternity.
They told us the surgery would be about 5 hrs. That time came and went by an hour and then an hour and a half without updates.
When one of the two surgeons finally came to see us, he said they had spent an hour and a half waiting on a test to rule out a very rare tumor that would determine the way they handled the removal.
And it was negative.
And, he said, they got it all out. The tumor was the size of the end of his thumb. It all went well.
We breathed a huge sigh of releif.
That night Kelly stayed with her in the ICU. Because of Covid, only one of us was allowed. And three ICU units were condensed into one to make room for Covid beds. He tried to get some sleep in an office chair next to her bedside with his legs up on a garbage can.
She was speaking, fairly lucid. All the machines and beeping, but she was still here, and she was still her.
We spent 5 days in hospital. They were hard because she was in trauma, anxious, coming off anesthetic and narcotics. Her fear and discomfort in those days was so hard for us to take.
And then we were allowed to go home. Thank God, on the mend.
But one morning, a day after her staples were removed, she woke up and her swelling looked worse. She had a big emotional meltdown, went downstairs to vent and came back out with leakage out of the top of her suture.
Back to the emerge. Again, Kelly, the braver of us, took her in.
They admitted her and the next day she spiked a high fever. Shit. An infection? Near her brain?
After a couple days of antibiotics and drawing off fluid, no improvement.
Back into Surgery
The surgeon had to open it all up again, remove the bone, scrub it, clean the whole area. F**k.
The labs came back. MRSA, and antibiotic resistant strain.
A new IV antibiotic and more time in hospital.
The Worst Case Scenario
I don’t want to tempt fate with this statement. But the pathology on the tumor came back while she was in hospital fighting the infection.
When a team of 6 or 7 people streamed into the meeting room, we knew the news was not good.
Vera’s tumor showed a specific mutation. Cancer.
22 thoughts on “CHRONOLOGY OF THE NIGHTMARE WE CAN’T WAKE UP FROM: PART 2”
Thinking of Vera and your family often💕
Keeping you all in my prayers🙏🏼
Thank you Ginelle
To Tricia ,Kelly & Sweet Vera…. Included is my Dear Heart Sweet Deb Firmaniuk my BFF for many years…. I sending you ALL the longest tightest hugs 🥰enveloping you close to my heart and with many prayers 🙏🏻🙏🏻🙏🏻🙏🏻To you all … No one can possibly imagine the dispear your going through… We all have to gather our strength to bestow upon sweet Vera travelling this difficult journey set before her… before you all …. Positively…acceptance to travel forth…. My heart breaks 💔for you all… Stay strong … sending Love Hugs & Prayers to you….🙏🏻💔🥰💔🥰
Thank you Sue
Truly touching, I’ll pray and focus all my energy for your wonderful daughter.
Thank you Marc
Dear Trish and Kelly, my heart broke as I read this. You’re in my thoughts and prayers. Such a lovely, strong and caring and loving couple you are. And as parents you are being put through something we all call a nightmare. Please know that in the background there are so many people that care about you and are here for you.
Dear Vera, you are just a little girl. A loving, fierce,talented, sweet and very strong little girl with some pretty big, huge complicated diagnosis. You remember please, that there are people who don’t even know you who will be praying and sending out kind and caring thoughts that you continue to stay strong and that you know how loved you are by your family and friends. You are surrounded with great doctors and a time in science where anything in the world can happen. Keep these positive thoughts with you Vera. Sending you all hugs and friendship and much caring.
Take care of each other, rest. Just do what you need to do. Much love and caring to you and your family.
Thank you Joy
Thank you, we appreciate all the prayers
Thank you so much for sharing your story with us. My thoughts and prayers are with all of you💗
Thank you Joelle
Dear Debra, Trish, Kelly & Sweet Vera
I am wrapping each one of you in my Prayers. 🙏Huge Healing Hugs to Vera.
Thank you Bonnie
Thank you Bonnie
Lovely Vera, Trish & Kelly,
Sending you loads of love & light. I’m actually speachless which is rare. Hang in there beautiful family! Your in my daily meditations.✨👌💫
Love & light,
Thank you Lissette
Haha, thank you Lisette.
Your story gave me chills. I had epilepsy growing up and my niece has been admitted to the hospital from seizures many times in her short 8 years. That is not to say I know how you feel but I can only imagine given our experience. My heart goes out to you, Kelly and your beautiful, brave Vera.
Thank you so much Lisa. I had no idea you had epilepsy growing up, wow. There are so many different causes. We are devastated that Vera’s cause is such a scary one, but also, in retrospect, grateful for the seizures alerting us to the tumor’s presence early. Hugs.
Tricia my heart is so heavy and filled with anguish… to see your child …. I am so sorry your lovely family is going through so much pain. It is very kind of you to share your developing story. My thoughts, wishes, and prayers are with you, Kelly and Vera. I sincerely do not know what to say or how to express…through your story you have shared some of the pain, and just reading it is so very hard… your family, your friends, and all those people you have touched throughout the years are sending their love.
Thank you so much Leslie