The chemo is not working. There are more nodes in her lungs. Her case is being brought to tumor board tomorrow and we will have another family meeting afterwards. Her kidney and heart are still a major concern.
Our hearts are breaking. Her angel wings keep getting bigger and are threatening to fly her away.
Please keep her in your thoughts and prayers.
Wednesday, 10 August 2011
Wednesday.
Wednesday is here and so are we.
After getting very pumped up on Monday about our impending dishcharge, our plans have come to a complete halt. I chased down doctors and nurses yesterday to find out the results of all her scans and when we could leave, and no one had a clear answer for me. They had to talk to Dr. Schultz. Dr. Schultz had to talk to radiology. Her scans can't be interpreted easily. Okay, but why does that change us going home? It's her counts that count (Ha. Ha. Ha.) and those are fine. The only reason I can think of is that her lungs are much worse than originally speculated, and Dr. Schultz wants to have another "family meeting" to discuss her prognosis. Or maybe it's not cancer in her lungs at all, and they need another specialist working on her case. We already have oncologists, cardiologists, endocrinologists, nephrologists and radiologists so why not throw in a pulmonolgist as well? That's a thing, right?
I'm really volatile today. I can't express how angry I feel. It's not warranted for the situation, I know that, but it's there nonetheless. It's coming from a place of deep sadness and fear. But please don't try to make it better. If you see me coming, look away. Do not engage me. Do not allow me to indulge into this pit of angry despair. I will be better by Thursday.
After getting very pumped up on Monday about our impending dishcharge, our plans have come to a complete halt. I chased down doctors and nurses yesterday to find out the results of all her scans and when we could leave, and no one had a clear answer for me. They had to talk to Dr. Schultz. Dr. Schultz had to talk to radiology. Her scans can't be interpreted easily. Okay, but why does that change us going home? It's her counts that count (Ha. Ha. Ha.) and those are fine. The only reason I can think of is that her lungs are much worse than originally speculated, and Dr. Schultz wants to have another "family meeting" to discuss her prognosis. Or maybe it's not cancer in her lungs at all, and they need another specialist working on her case. We already have oncologists, cardiologists, endocrinologists, nephrologists and radiologists so why not throw in a pulmonolgist as well? That's a thing, right?
I'm really volatile today. I can't express how angry I feel. It's not warranted for the situation, I know that, but it's there nonetheless. It's coming from a place of deep sadness and fear. But please don't try to make it better. If you see me coming, look away. Do not engage me. Do not allow me to indulge into this pit of angry despair. I will be better by Thursday.
Monday, 8 August 2011
Wednesday?
Wednesday?!?! We could be going home as soon as Wednesday!?!
Unreal!
Eleanor is kicking ass and taking names. Her counts skyrocketed today which means they went as low as they were going to(which wasn't very low), and are on their way back up. She did really well during her tests today, too. She had a chest x-ray and then she was sedated for a CT scan and an MRI. When she was coming out of sedation, she went for an echo of her heart. Whew. I'm exhausted just writing that! She still has her GFR tomorrow morning and a date with the audiologist (date and time TBA). Nobody has talked to me about the results of any of these tests, and I am keeping my fingers and toes crossed that they are good.
Oh, and I should mention that when she came to, she also had a photo shoot. And she loved every second of it. That girl of mine...
Unreal!
Eleanor is kicking ass and taking names. Her counts skyrocketed today which means they went as low as they were going to(which wasn't very low), and are on their way back up. She did really well during her tests today, too. She had a chest x-ray and then she was sedated for a CT scan and an MRI. When she was coming out of sedation, she went for an echo of her heart. Whew. I'm exhausted just writing that! She still has her GFR tomorrow morning and a date with the audiologist (date and time TBA). Nobody has talked to me about the results of any of these tests, and I am keeping my fingers and toes crossed that they are good.
Oh, and I should mention that when she came to, she also had a photo shoot. And she loved every second of it. That girl of mine...
Saturday, 6 August 2011
Honourable Discharge
It's official! We're going home!
We have been given approval to leave the hospital before her next round of chemo. I can't even believe it. We were originally told that we wouldn't be able to leave until after Christmas! We are still waiting for her counts to bottom out, which is taking longer than last time, but it looks like we can leave next weekend.
It's a daunting week to get through. Not only will she be without an immune system, but we have to do a CT scan of her lungs, an MRI of her belly (both scheduled for Monday morning), a GFR and an echo of her heart. Yikes! A lot of information will be gathered from these scans and will give us an idea of how to move forward. This type of cancer is very aggressive and our oncologist is anticipating that it has moved to her lungs. I am cautiously optimistic; she just doesn't seem like a baby with stage 4 cancer. I guess I don't know any babies with advanced cancer, but she doesn't seem that sick. Even the chemo can't take her down! Either way, we will know on Monday, and then home on the weekend!
Keep up the great work, little bear! We're so proud of you!
We have been given approval to leave the hospital before her next round of chemo. I can't even believe it. We were originally told that we wouldn't be able to leave until after Christmas! We are still waiting for her counts to bottom out, which is taking longer than last time, but it looks like we can leave next weekend.
It's a daunting week to get through. Not only will she be without an immune system, but we have to do a CT scan of her lungs, an MRI of her belly (both scheduled for Monday morning), a GFR and an echo of her heart. Yikes! A lot of information will be gathered from these scans and will give us an idea of how to move forward. This type of cancer is very aggressive and our oncologist is anticipating that it has moved to her lungs. I am cautiously optimistic; she just doesn't seem like a baby with stage 4 cancer. I guess I don't know any babies with advanced cancer, but she doesn't seem that sick. Even the chemo can't take her down! Either way, we will know on Monday, and then home on the weekend!
Keep up the great work, little bear! We're so proud of you!
Thursday, 4 August 2011
Blue Skies
Blue skies smiling at me
Nothing but blue skies do I see
Bluebirds singing a song
Nothing but bluebirds all day long
Never saw the sun shining so bright
Never saw things going so right
Noticing the days hurrying by
When you're in love, my how they fly
Blue days, all of them gone
Nothing but blue skies from now on
Summertime has finally arrived on the West Coast. I've been lucky enough to get on pass and enjoy the sunshine. While Irving Berlin may be the soundtrack ringing in my ears, it's not necessarily the song in my heart. Those blue days may be gone, but blue skies aren't as clear as they seem and the haunting melody echoes more true than the charming lyrics. As Eleanor continues to thrive and defy odds, I find myself riddled with sadness and loneliness. I have so many wonderful friends and family members but my heart is not whole without Kristopher. I miss him. I miss my dog. I miss the little home we were building with big dreams.
I moved away from acting because my dreams changed. I turned my back on what I thought was my calling and pursued a different path because I wanted it to lead to babies and puppies and sleepless nights with lots of "duddle" time. I wanted a house with a yard and an army to run with. It was a vague shadow of a dream that was drawn into focus with Kristopher's keen eye. And now it has all been put on hold. More than that, it feels like it has been ripped to shreds. It's so hard. We were getting so close to where we wanted to be and now we cling to what was, what could be and what is left of our broken hearts.
People keep asking, "what do you want? What do you need?" I want my family back under the same roof, in the same city. I need my baby to get better. It's hard to not feel like you have been kicked in the proverbial nuts everyday. Somedays (like today) I need a proverbial jockstrap. This box of Girl Guide cookies will have to suffice. That, and a "good night" phone call to my love and a deep, dark sleep.
Nothing but blue skies do I see
Bluebirds singing a song
Nothing but bluebirds all day long
Never saw the sun shining so bright
Never saw things going so right
Noticing the days hurrying by
When you're in love, my how they fly
Blue days, all of them gone
Nothing but blue skies from now on
Summertime has finally arrived on the West Coast. I've been lucky enough to get on pass and enjoy the sunshine. While Irving Berlin may be the soundtrack ringing in my ears, it's not necessarily the song in my heart. Those blue days may be gone, but blue skies aren't as clear as they seem and the haunting melody echoes more true than the charming lyrics. As Eleanor continues to thrive and defy odds, I find myself riddled with sadness and loneliness. I have so many wonderful friends and family members but my heart is not whole without Kristopher. I miss him. I miss my dog. I miss the little home we were building with big dreams.
I moved away from acting because my dreams changed. I turned my back on what I thought was my calling and pursued a different path because I wanted it to lead to babies and puppies and sleepless nights with lots of "duddle" time. I wanted a house with a yard and an army to run with. It was a vague shadow of a dream that was drawn into focus with Kristopher's keen eye. And now it has all been put on hold. More than that, it feels like it has been ripped to shreds. It's so hard. We were getting so close to where we wanted to be and now we cling to what was, what could be and what is left of our broken hearts.
People keep asking, "what do you want? What do you need?" I want my family back under the same roof, in the same city. I need my baby to get better. It's hard to not feel like you have been kicked in the proverbial nuts everyday. Somedays (like today) I need a proverbial jockstrap. This box of Girl Guide cookies will have to suffice. That, and a "good night" phone call to my love and a deep, dark sleep.
Wednesday, 3 August 2011
Bursting
What a glorious, extra long, long weekend. Kris took a few days off work so we could celebrate our anniversary together. It was so nice to get some extra time with him, and Eleanor loved the added attention. It also made moving back to 3B extremely easy! That's right, we are back to "normal"! Well, the Parent's Lounge is still quarantined and all my food is in there, but aside from that, normal! What a crazy week, but as I said, having Kris around over the weekend made it so much better. We even made it out for an anniversary dinner!
I must interject my thoughts here and draw attention to some very special people. Last night I got a "poppy-inny" from an old, old, old friend from elementary school, Natalie. She came by with a bag of delicious food, and I panicked as Eleanor was trying to get down for the night, and I wanted to get some alone time with Kris, and she simply gave me a hug and didn't fuss and off she went. I am in love with this girl, especially as all the food that was given to me last week (thank you Steph and Yung!!!) is currently behind a sealed door! Anyway, Kris and I run off into the night and decide to go for dinner. We can't afford it, but it's our anniversary, so we indulge. We're halfway through our meal when an old, old friend from high school pops over to say hi. Graham is a lovely guy who helped me with my fundraising for the NYC marathon two years ago. He regaled us with stories of his next endurance challenge and gave us big hugs and off he went. Well, when we went to pay the bill, the waitress informed us that an old friend had taken care of it. That poor waitress. I burst out crying (and am starting up again as I type this) and pretty much fell apart in the middle of the restaurant. My heart aches from these acts and I wonder how can people be so good? I think of all the good people in Mocute's Lithuanian church in Toronto who don't know Eleanor, and yet they held special masses just for her. I think of a patient of my dad's who got her church to do the same thing. I am overwhelmed by how much love and support a tiny being can receive, and how Kris and I, who are really just two douchebags standing in her shadow, can also be the beneficiaries of such incredible love and light. Some days it is too much for my broken heart to take.
Eleanor has been great. More than great, in fact, she has been super. Her oncologist was lurking around the ward yesterday and didn't even stop in to see her. What's there to say? She's perfect. Her counts are still super high today, so we get another day out. I'm on my own, so I have no idea what to do. Hmmmm... Anybody want to play?
I must interject my thoughts here and draw attention to some very special people. Last night I got a "poppy-inny" from an old, old, old friend from elementary school, Natalie. She came by with a bag of delicious food, and I panicked as Eleanor was trying to get down for the night, and I wanted to get some alone time with Kris, and she simply gave me a hug and didn't fuss and off she went. I am in love with this girl, especially as all the food that was given to me last week (thank you Steph and Yung!!!) is currently behind a sealed door! Anyway, Kris and I run off into the night and decide to go for dinner. We can't afford it, but it's our anniversary, so we indulge. We're halfway through our meal when an old, old friend from high school pops over to say hi. Graham is a lovely guy who helped me with my fundraising for the NYC marathon two years ago. He regaled us with stories of his next endurance challenge and gave us big hugs and off he went. Well, when we went to pay the bill, the waitress informed us that an old friend had taken care of it. That poor waitress. I burst out crying (and am starting up again as I type this) and pretty much fell apart in the middle of the restaurant. My heart aches from these acts and I wonder how can people be so good? I think of all the good people in Mocute's Lithuanian church in Toronto who don't know Eleanor, and yet they held special masses just for her. I think of a patient of my dad's who got her church to do the same thing. I am overwhelmed by how much love and support a tiny being can receive, and how Kris and I, who are really just two douchebags standing in her shadow, can also be the beneficiaries of such incredible love and light. Some days it is too much for my broken heart to take.
Eleanor has been great. More than great, in fact, she has been super. Her oncologist was lurking around the ward yesterday and didn't even stop in to see her. What's there to say? She's perfect. Her counts are still super high today, so we get another day out. I'm on my own, so I have no idea what to do. Hmmmm... Anybody want to play?
Monday, 1 August 2011
Missing In Action
I feel like I have slipped behind on my posting. We have been going out on pass over the weekend, and the fresh air has knocked my socks off. It's incredible how tired I have been. Even now my eyelids are drooping, and it's not even 9:00pm. Eleanor is doing great. Her counts are really high still and they should start dropping over the week. Although it's great to get this time with her while she is still feeling so good, we are a bit anxious for her to dip as the sooner her counts drop, the sooner she will feel better and the sooner we can go home! Our docs are quite anxious to discharge us and get us back to normal life, even if it's just for a few days. I'm getting ahead of myself. I need sleep tonight to look after my baby tomorrow and tomorrow and tomorrow. Sleep!
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