Today Jay and I went up to McMaster to meet with Brooklyn's Oncologist, Dr. Portwine. Pathology confirmed the following:
Brooklyn had a stage 1 neuroblastoma tumour.
About 5% of it still contained 'hot' (active) neuroblastoma cells.
About 40% of it contained 'maturing' ganglioneuroma cells.
The last 55% of the tumour contained 'matured' ganglioneuroma calls.
The location of the tumour (in her abdomen, attached to the aorta) was such that they could not ensure a healthy margin between the end of the diseased tissue, and the beginning of the good tissue. As such, it is possible some cancer cells were left behind, though to the naked eye there was nothing left to see.
The tumour was 8.5 x 6.9 x 2.8cm.
What does this all mean?
Well the interesting thing about this cancer is that is actually works reverse to common knowledge about the disease. As the tumour matures, it moves from highly malignant to entirely benign. The concerns come when the neuroblastoma cells spread to other parts of the body, moving children from a stage 1 situation to something much more serious.
As far as unlucky goes, we are entirely blessed to be very, very lucky with a stage 1 scenario.
Brooklyn's oncologist is not requiring any further treatment, but she will be followed with regular MRIs (every three months) and urine tests (monthly) for the next year and beyond. Should something unusual arise, then additional tests will be ordered.
We've found two very good links to more information about this type of childhood cancer, read them here and here, should you desire.
Relapses for this type of cancer occur in 5-15% of low-moderate risk cases.
Brooklyn is not at a higher risk of a new cancer occurrence as a result of this one.
Brooklyn's wound is nearly healed, however she is still having some pain in her legs and numbness in her feet. They hope this nerve damage is only temporary. It is uncomfortable, but does not require meds for pain.
Oddly enough, Jay and I are mellow tonight. I will blog about our feelings once I have pinpointed them, but we think we just feel emotional and exhausted all over again.
Sad that pathology proved she had cancer.
Sad that she went through such trauma.
Sad that our new normal will leave us regularly worrying about a relapse.
I am sure our positive attitudes will return soon, but in the meantime we'll wait to celebrate until we feel good and ready.
xo
#TeamBrookie #WarriorPrincess
This blog was created in 2011 to capture my very personal journey of leaving full time work to become a work-at-home mother of three beautiful children. Naturally, this space has morphed into a place of personal reflection, celebration and sometimes even sadness. I’ve written about childhood cancer, food allergy and anaphylaxis, grief, marriage, friendship, parenting and everything in between, all with a growing sense of mindfulness and gratitude. Please, grab a cup of tea and stay awhile.
Showing posts with label tumour. Show all posts
Showing posts with label tumour. Show all posts
Friday, March 4, 2016
Saturday, February 13, 2016
The moment the nightmare ended
Shortly before Brooklyn's surgery, the doctors gave her some medication to relax. She is so traumatized from the last month, we requested this to avoid another major OR meltdown.
She quickly relaxed, played her Shopkins game and waited for her pending surgery. Jay and I were a mess, every conversation with doctors over the last month skipping through our heads, every outcome flashing before our eyes, knowing that once again we were putting our little girl's life in the hands of others.
She couldn't form a cohesive sentence in the minutes before we moved into the OR, but let me tell you, she most certainly could once she rolled into surgery. She told every doctor off, saying they were meanies and she absolutely refused to lay down. The surgical team held her down while I rubbed her head and sang 'our song' to her, mask over her little face.
It was a moment that took my breath away.
I came out and fell apart in Jay's arms.
There was nothing left to do but wait.
And it hurt the greatest depths of my heart.
In the hours that followed, we were visited by nurses, child life specialists and other McMaster team members we met over the last few weeks. It really hit me then, that this wasn't just a terrible dream. We weren't making this a bigger deal than it was.
It also hit me that we had the entire McMaster professional team routing for us.
For her. For a positive outcome.
Our social media pages were oozing with prayer offerings, energy dedications and words of love and faith.
It was overwhelming.
I was totally numb.
And then, it happened.
Brooklyn's surgeon came out to see us.
Much earlier than anticipated, Jay and I flew out of our chairs.
She looked at us so calmly and said,
"I removed it. I was able to remove all of it. As far as I can see, 100%"
I was stunned.
I felt my knees get weak.
I told her she was incredible, to which she replied it wasn't that big of a deal. She knew the tumour was friendly and she knew she could do it.
To her, it was science.
Training. Skill.
To us, it was miraculous.
Prayers answered. A new beginning.
Our daughter, our little Warrior Princess, was going to be ok.
In the next hour, we were visited by her other surgeons, who were proud to say they also agreed that 100% of the tumour was removed. I hugged them so hard, I probably scared them.
Lastly, our oncologist popped in. Her words went like this,
"You better consider going on that vacation after all."
You can't even imagine the tears that followed.
#TeamBrookie #WarriorPrincess
_
Brooklyn is still admitted at McMaster, and she's moving through the ups and downs of post-operative recovery. While this week has been exhausting and difficult, we're confident she will make a full recovery in the weeks to come. Final pathology will be available in another ten days or so, at which time we hope to hear Brooklyn will only need to be monitored regularly and not undergo any further treatment.
Thank you for your continued prayers and love. xo
She quickly relaxed, played her Shopkins game and waited for her pending surgery. Jay and I were a mess, every conversation with doctors over the last month skipping through our heads, every outcome flashing before our eyes, knowing that once again we were putting our little girl's life in the hands of others.
She couldn't form a cohesive sentence in the minutes before we moved into the OR, but let me tell you, she most certainly could once she rolled into surgery. She told every doctor off, saying they were meanies and she absolutely refused to lay down. The surgical team held her down while I rubbed her head and sang 'our song' to her, mask over her little face.
It was a moment that took my breath away.
I came out and fell apart in Jay's arms.
There was nothing left to do but wait.
And it hurt the greatest depths of my heart.
In the hours that followed, we were visited by nurses, child life specialists and other McMaster team members we met over the last few weeks. It really hit me then, that this wasn't just a terrible dream. We weren't making this a bigger deal than it was.
It also hit me that we had the entire McMaster professional team routing for us.
For her. For a positive outcome.
Our social media pages were oozing with prayer offerings, energy dedications and words of love and faith.
It was overwhelming.
I was totally numb.
And then, it happened.
Brooklyn's surgeon came out to see us.
Much earlier than anticipated, Jay and I flew out of our chairs.
She looked at us so calmly and said,
"I removed it. I was able to remove all of it. As far as I can see, 100%"
I was stunned.
I felt my knees get weak.
I told her she was incredible, to which she replied it wasn't that big of a deal. She knew the tumour was friendly and she knew she could do it.
To her, it was science.
Training. Skill.
To us, it was miraculous.
Prayers answered. A new beginning.
Our daughter, our little Warrior Princess, was going to be ok.
In the next hour, we were visited by her other surgeons, who were proud to say they also agreed that 100% of the tumour was removed. I hugged them so hard, I probably scared them.
Lastly, our oncologist popped in. Her words went like this,
"You better consider going on that vacation after all."
You can't even imagine the tears that followed.
#TeamBrookie #WarriorPrincess
_
Brooklyn is still admitted at McMaster, and she's moving through the ups and downs of post-operative recovery. While this week has been exhausting and difficult, we're confident she will make a full recovery in the weeks to come. Final pathology will be available in another ten days or so, at which time we hope to hear Brooklyn will only need to be monitored regularly and not undergo any further treatment.
Thank you for your continued prayers and love. xo
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