Before I say anything else, I want to say thank you. For the love, the support, and the donations. Equally, all of those things have made it possible for Andrew and I to be by Lilee-Jean’s side from day one, and for the rest of her treatment.
Love is what we have been showered with.
Love is what is beating this cancer.
And Love is the only word we have to describe our appreciation to all of you.
I’m new at this whole blog thing, so bare with me! I am writing from my own point of view and experiences, I’m writing because I feel like you have all become a part of Lj’s journey, and I am able now to share a little more with you. So… Here goes!
-Emergency ultrasound after a clinic doctor the night before noticed LJ’s large cranial circumference.
Our world was turned upside down when the ultrasound showed a mass and cyst.
- lilee’s first craniotomy (biopsy).
-results from the MRI and biopsy confirmed that the tumor was an aggressive brain cancer called Glioblastoma Multiforme.
-We were given two options. Make her comfortable, which would have been heavy sedation, or fight for her life. We chose to fight.
- LJ heads into her second surgery, to remove as much of the tumor as possible, and her central line was inserted (CVC, a permanent IV port in her chest for chemo therapy, blood tests, transfusions etc.)
The surgery was risky, and she would most likely come out with some sort of physical or mental disabilities.
6 hours go by… Lilee got unstable so they closed her up.
LJ made it out of surgery with no expected disabilities. Our first of many miracles.
-surgeon knew they didn’t take out enough tumor to wait for her
Incision to heal before starting chemo. She didn’t have enough time.
-Round 1, day 0 of chemotherapy.
-post op MRI showed around 45% of tumor was taken out. We had a 10% chance of survival.
-lilee-Jean’s first Halloween.
-Lilee-Jean recovered quickly and was able to start round 2 early.
-round 2, day 0
-Lilee-Jean’s first birthday.
-Canucks came to visit. Sang LJ happy birthday.
-lj’s first birthday party in the playroom with her closest family and friends.
- MRI. Results showed the tumor was half the size since the post op MRI, and parts of it had died. The second miracle we witnessed, considering they only hoped for a stoppage in growth.
-Christmas at home because lj’s counts were too low to start round 3. Bitter sweet
-round 3, day 0
- lilees stem cell harvest.
-round 4, day 0
-lilee keeps throwing up her medication so they put in an “NG” tube.
-lilee decided she didn’t want the NG tube any more and puked it out.
-world cancer day takes on a whole new meaning
-MRI. Results showed the tumor size had shrunk by at least half again. Unfortunelty this good news came with bad. It was still intwined with the brain, and surgery would be risky if not close to impossible without causing major brain damage. We left not knowing what our next step was…
-The doctors decided that chemo was working so well, and surgery just wasn’t an option that 2 more rounds of chemo was our next step. Because with this cancer they don’t tend to do more then 4 rounds, the risks are higher and we are told we need to take it day by day and be ready for some hard times
-round 5, day 0
- with a delay due to Low counts, finally, round 6, day 0
What’s next? MRI in 3 weeks. That will determine everything. If the tumor has pulled away from the brain we can do surgery followed by megatherapy, if it hasn’t…
Treatment is getting harder on me as it gets harder on my girl. As we draw close to the 6th month anniversary of the beginning of this hell, I find myself dragging even more then I was (which I didn’t know was possible). Of course the rounds are harder on lilee, which in turn is harder on mom and dad, but with so many other outside stressors it’s like there is lead in my shoes. It’s hard to believe life goes on outside of the world we have been tossed into, because our lives do not. I am living this treatment along side our baby girl. My life didn’t “go on,” it didn’t just continue. It’s at a stand still until I can take my baby home along with the words “remission” and soon to follow “Cured.”
Being home is hard, in that respect, watching people live lives so normal, so… Healthy, then getting stares at lilees scar. At first I got defensive, but then something inside of me shifted. In a moment i can’t explain, and I burst open with pride. I want people to see her scar and know that she has gone through a hell most people will never know. And then see her smile. And laugh. And love. I don’t think pride comes any greater then this.
Then I grocery shop alone, and it takes every ounce of strength I have to stop the steady flow of tears that are building up in my eyes, from pouring onto the floor of isle 6. Why? I couldn’t tell yah. Maybe it’s because I see little happy families with healthy little kids, and I’m stricken with envy.
Maybe it’s because I know half the things I buy will go bad because we won’t be home long enough to enjoy them. Or maybe it’s just the act it’s self. Normal. Simple. And yet to me, In a life so precarious, it is so challenging and frustrating.
I find every day has its challenges. Some big, monstrous, even, and some small. But every day has its victories, too. And it’s those victories, big or small that keep us moving forward, even when the light at the end of the tunnel doesn’t seem any closer, even when it doesn’t seem lit.
We will celebrate each day. We will do what we can to make it easier on LJ, and on each other, so that we have the strength, body and soul, to fight.
I am blogging because I feel it’s important to share our struggles as human beings, so that we know we aren’t alone. So you know that I’m here too, I’m struggling too. But together, we can make it through. With Compassion, empathy and love, we can help each other make it through. Plus I love the sound of my proverbial voice
Thank you again, for being a part of our journey. It means more then you will ever know to Andrew and I, and I know it’s making the difference in Lilee-Jean’s amazing progress.
One day at a time…