My daughter has incredible eyes. I suspect that people are drawn to them out of politeness because her cushionoid features were/are a little alarming, but her eyes are what hold their attention and get all the comments. It doesn't hurt that her eyelashes are 10 feet long either!
They have an incredible knowing look to them; she really takes you in when she looks at you. Tonight as she grabbed my nose and pulled my face close for inspection, she looked at me as if to say, "it's okay. I'm okay, and you're okay too". And then she proceeded to play peek-a-boo with a washcloth.
I don't know much about anything, but I know this kid is fucking amazing. All these kids are. We have been surrounded by such heartbreaking stories since arriving at the hospital, but the only hearts that are breaking are the ones who listen. These kids are just getting on with getting better. Heaven sent, heaven blessed, every last one of them.
No doubt she is going to get puffy and swollen again. Her cheeks will swell up and try and hide those eyes, but I know that even if she can't see me, she will still grab my nose and pat my cheek. "It's okay. I'm okay, and you're okay too."
Tuesday 28 June 2011
Chemo Tuesday
Eleanor starts her chemotherapy today. They are modifying her treatment even more due to a lazy kidney. While her output has been pretty good, the filtration rate of her remaining kidney is not up to snuff, so they are reducing one of the drugs by half.
Part of me is relieved that they are going to take it easy on her, especially for the first round, but the other part of me is increasingly anxious about those microscopic cancer cells that are dividing and growing inside her. It's like I can't figure out what scares me more - the cancer or the treatment. It doesn't help that they were supposed to take her down first thing this morning, and it's now after 2:00pm with no end in sight. It doesn't help my baby if I am anxious so I have a volunteer watching her while I collect my thoughts.
I have been deliberately avoiding the literature that was provided to us. This is weird for me. Up til now I have been devouring all the information the doctors and nurses have given me, but I can't bring myself to learn about chemo. It's like the assignments in school or at work that were over my head, so I would put them off or (God forbid) not do them at all. I'll get there eventually.
Eleanor has been looking great these days. Her tummy is hardly distended at all, her scar is healing nicely, the extra tissue and fat on her neck and face seems to be shrinking by the day and her acne is gone. Aside from the Elvis sideburns, furry back and Italian grandmother chin she looks like a proper baby! And she's back down from size 6 (!!!!!) to size 3 diapers. She feels great, too. She's very snuggly and less breakable. It's hard to believe she's sick at all.
I'm going to go get another snuggle now...
Part of me is relieved that they are going to take it easy on her, especially for the first round, but the other part of me is increasingly anxious about those microscopic cancer cells that are dividing and growing inside her. It's like I can't figure out what scares me more - the cancer or the treatment. It doesn't help that they were supposed to take her down first thing this morning, and it's now after 2:00pm with no end in sight. It doesn't help my baby if I am anxious so I have a volunteer watching her while I collect my thoughts.
I have been deliberately avoiding the literature that was provided to us. This is weird for me. Up til now I have been devouring all the information the doctors and nurses have given me, but I can't bring myself to learn about chemo. It's like the assignments in school or at work that were over my head, so I would put them off or (God forbid) not do them at all. I'll get there eventually.
Eleanor has been looking great these days. Her tummy is hardly distended at all, her scar is healing nicely, the extra tissue and fat on her neck and face seems to be shrinking by the day and her acne is gone. Aside from the Elvis sideburns, furry back and Italian grandmother chin she looks like a proper baby! And she's back down from size 6 (!!!!!) to size 3 diapers. She feels great, too. She's very snuggly and less breakable. It's hard to believe she's sick at all.
I'm going to go get another snuggle now...
Sunday 26 June 2011
Moving
We've been uprooted once again, and are now living in a broom closet.
Kris is obsessed with the Eleanor's numbers on the monitor. He watches them so closely that the nurse called in the cardiologist to quell his fears. She did one better; she discharged us! She still has "bratty" episodes where her heart rate drops suddenly, but it come back up as quickly as it fell, so the doctors aren't concerned. It's amazing to think that one of the things that concerned us so much is taking care of itself. Well done, little (big) heart!
We aren't due to start chemo until Tuesday, so they moved us to 3B, the oncology ward. And, as I stated earlier, we are in a tiny room. Eleanor's crib is stuffed into the corner and my cot stays folded up against the wall. When I pull it out to sleep, the nurse has to lean over me to get to the baby. It's going to be a fun couple of days. Barf. On the plus side, baby girl is free of electrodes and wires. She just has her E.T glowing toe-thing. I'm pretty sure that is the technical name of it. She's also less fussy about how she gets handled, which means her tummy must be feeling better.
I had a dream last night that she wrapped her arms around my neck and stood up on my lap. Eleanor has never been able to bear weight on her legs, so this dream left me with an overwhelming sense of longing. It was like the dreams I had when she was just a wee one in my tummy, and her tumor was just an angry cell. Waiting and wondering what she will be like when she arrives, and now anticipating what she will become. I suppose it's the same for all new parents, being awestruck by each incredible milestone their child reaches. Smelly's will take a while longer than most, but she will get there. I can't wait to feel her little feet step step stepping on my legs. Until then, I'll just enjoy her sticking her hands in my mouth and grabbing my teeth. That's something? She's such a weirdo.
Kris is obsessed with the Eleanor's numbers on the monitor. He watches them so closely that the nurse called in the cardiologist to quell his fears. She did one better; she discharged us! She still has "bratty" episodes where her heart rate drops suddenly, but it come back up as quickly as it fell, so the doctors aren't concerned. It's amazing to think that one of the things that concerned us so much is taking care of itself. Well done, little (big) heart!
We aren't due to start chemo until Tuesday, so they moved us to 3B, the oncology ward. And, as I stated earlier, we are in a tiny room. Eleanor's crib is stuffed into the corner and my cot stays folded up against the wall. When I pull it out to sleep, the nurse has to lean over me to get to the baby. It's going to be a fun couple of days. Barf. On the plus side, baby girl is free of electrodes and wires. She just has her E.T glowing toe-thing. I'm pretty sure that is the technical name of it. She's also less fussy about how she gets handled, which means her tummy must be feeling better.
I had a dream last night that she wrapped her arms around my neck and stood up on my lap. Eleanor has never been able to bear weight on her legs, so this dream left me with an overwhelming sense of longing. It was like the dreams I had when she was just a wee one in my tummy, and her tumor was just an angry cell. Waiting and wondering what she will be like when she arrives, and now anticipating what she will become. I suppose it's the same for all new parents, being awestruck by each incredible milestone their child reaches. Smelly's will take a while longer than most, but she will get there. I can't wait to feel her little feet step step stepping on my legs. Until then, I'll just enjoy her sticking her hands in my mouth and grabbing my teeth. That's something? She's such a weirdo.
Bizarre Pump Triangle
I'm fighting my own dragons these days. One of them is the hospital breast pump. Blerg.
Our relationship began two weeks ago when Eleanor went in for her first surgery. I breast fed her for the final time at 3:30am on Saturday June 11. Then I met the pump. At first it was cool; we had a fairly good repor and we saw each other exclusively for a few days. Then things started to change. Sometimes when I went to see the pump, he wouldn't be there. I would wait around for what seemed like hours for him to show up. Then he would turn up in some random corner of the ICU and claim he had been there all along. I started to suspect that maybe there was someone else. We had never had "the talk" about seeing each other exclusively, so technically he could but I still was a bit shocked. We were getting along great! Why did he have to go hiding on me?!?
Eleanor was moved to a bed by the window following her second surgery. That was when everything fell apart. Turns out it's easy to get caught cheating when your women live next door to each other! Her name was Nancy and she has a three week old baby with a heart condition. I was furious, and our relationship immediately began to crumble. I was in such an emotional daze, I started seeing another pump right away - which is so unlike me. He is my go-to pump and is portable but nothing like the hospital pump. My supply and my heart began to decrease. I just didn't have the same feeling with this portable pump. Lucky for me, our time in the ICU was over and we could start fresh up in the ward.
I met someone new as soon as we had arrived. His wheels were a little rusty, but aside from that, he was everything I could have ever hoped for in a pump - and he was all mine. No sooner had we started our all encompassing affair when Eleanor shows up on the scene. Talk about drama! I now know what ICU pump must have felt like! It's tough splitting your time! I feed the baby and then run down the hall to meet the pump. I don't know how much more of this I can take. It's exhausting!
Our relationship began two weeks ago when Eleanor went in for her first surgery. I breast fed her for the final time at 3:30am on Saturday June 11. Then I met the pump. At first it was cool; we had a fairly good repor and we saw each other exclusively for a few days. Then things started to change. Sometimes when I went to see the pump, he wouldn't be there. I would wait around for what seemed like hours for him to show up. Then he would turn up in some random corner of the ICU and claim he had been there all along. I started to suspect that maybe there was someone else. We had never had "the talk" about seeing each other exclusively, so technically he could but I still was a bit shocked. We were getting along great! Why did he have to go hiding on me?!?
Eleanor was moved to a bed by the window following her second surgery. That was when everything fell apart. Turns out it's easy to get caught cheating when your women live next door to each other! Her name was Nancy and she has a three week old baby with a heart condition. I was furious, and our relationship immediately began to crumble. I was in such an emotional daze, I started seeing another pump right away - which is so unlike me. He is my go-to pump and is portable but nothing like the hospital pump. My supply and my heart began to decrease. I just didn't have the same feeling with this portable pump. Lucky for me, our time in the ICU was over and we could start fresh up in the ward.
I met someone new as soon as we had arrived. His wheels were a little rusty, but aside from that, he was everything I could have ever hoped for in a pump - and he was all mine. No sooner had we started our all encompassing affair when Eleanor shows up on the scene. Talk about drama! I now know what ICU pump must have felt like! It's tough splitting your time! I feed the baby and then run down the hall to meet the pump. I don't know how much more of this I can take. It's exhausting!
Friday 24 June 2011
Long Day's Journey Into Night
We had another conference room meeting last night. This one was planned, so it wasn't as scary as the ones down in ICU. Those ones were terrifying. The doctors would all breeze past you with their mouths set in firm lines, and one of them would gesture for you to follow. This one was much easier. Our doctors had all met at "Tumor Board" to discuss the best course of action for Eleanor's treatment and this meeting was just to fill us in on it.
We will be going through 6 to 8 cycles of chemotherapy, starting off relatively mild and extremely well supervised (back to Intensive Care). Each cycle will be about 3 weeks apart. Cancer has not spread to lymph nodes or to her bones, which is good, but there are 3 nodules on her lungs that may be of concern. We never got an accurate picture of her lungs because her heart was too unstable to risk holding her breath when she was incubated. So they might be totally unrelated, but most likely they are cancerous and if the chemo doesn't get rid of them, she will need surgery down the road to chop them out.
Good news on her heart! Her echo this week looks better than pre-operation! They keep telling us it will take 9 months to a year to go back to normal, but I have a sneaking suspicion that it will bounce back much quicker. The source of the cortisol (the tumor) is gone, and she is so resilient, I feel like her body can heal anything. Well, except cancer. She is going to need some help with that!
Chemo is terrifying. It's going to make her so sickly and for such a long time. And she can't tell us what hurts or what she wants. But I have a full four days before treatment starts to enjoy her and all her fuss-bottom ways, and we will enjoy every second!
We will be going through 6 to 8 cycles of chemotherapy, starting off relatively mild and extremely well supervised (back to Intensive Care). Each cycle will be about 3 weeks apart. Cancer has not spread to lymph nodes or to her bones, which is good, but there are 3 nodules on her lungs that may be of concern. We never got an accurate picture of her lungs because her heart was too unstable to risk holding her breath when she was incubated. So they might be totally unrelated, but most likely they are cancerous and if the chemo doesn't get rid of them, she will need surgery down the road to chop them out.
Good news on her heart! Her echo this week looks better than pre-operation! They keep telling us it will take 9 months to a year to go back to normal, but I have a sneaking suspicion that it will bounce back much quicker. The source of the cortisol (the tumor) is gone, and she is so resilient, I feel like her body can heal anything. Well, except cancer. She is going to need some help with that!
Chemo is terrifying. It's going to make her so sickly and for such a long time. And she can't tell us what hurts or what she wants. But I have a full four days before treatment starts to enjoy her and all her fuss-bottom ways, and we will enjoy every second!
Wednesday 22 June 2011
Go The Fuck To Sleep
There was a very real part of me that thought that once this tumor was out, all of my daughter's foibles would disappear. Turns out, she still sucks at sleeping, even with morphine and Tylenol. She slept 45 minutes today! It's almost 9:00pm! Child, don't you know you have cancer AND a heart condition? You need to rest! Maybe being incubated for a week means she will stay awake for a week? It's starting to feel like it!
Tuesday 21 June 2011
Oh my heart
Pack up your troubles in your old kit-bag,
And smile, smile, smile,
While you've a Lucifer to light your fag,
Smile, boys, that's the style.
What's the use of worrying?
It never was worth while, so
Pack up your troubles in your old kit-bag,
And smile, smile, smile.
Baby girl smiled like a big, fat baby this afternoon. Her daddy walked into the room and she gave him big, goofy, pain-free grins. Her eyes twinkled like the twinkle stars in her favourite song. Her shiny gums glistened with baby drool. Her cheeks grew so round and so full I thought they might pop off her face all together.
Oh, my heart.
Today was a good day.
And smile, smile, smile,
While you've a Lucifer to light your fag,
Smile, boys, that's the style.
What's the use of worrying?
It never was worth while, so
Pack up your troubles in your old kit-bag,
And smile, smile, smile.
Baby girl smiled like a big, fat baby this afternoon. Her daddy walked into the room and she gave him big, goofy, pain-free grins. Her eyes twinkled like the twinkle stars in her favourite song. Her shiny gums glistened with baby drool. Her cheeks grew so round and so full I thought they might pop off her face all together.
Oh, my heart.
Today was a good day.
Upstairs
Well, we have transitioned to the cardiology ward! So long, ICU, we will miss you!
No, seriously. Please take us back.
While having your child in intensive care may be terrifying, exhausting, and unsettling, it's also very secure. Eleanor received one-to-one care from a nurse and was attended to by a legion of doctors and residents. Now I am her primary caregiver and am supported by a nurse who also oversees two or three other patients. I've spent the last 24 hours wrestling her hands away from her nasal prongs until the nurse finally removed the apparatus. Have you ever tried to reason with a six month old who is addicted to fentanyl? It's not easy! Poor baby had the shakes and nausea all last night til we gave her a bolster of morphine. Baby likes her num nums!
All joking aside, she is doing quite well and I am slowly adjusting to our newest situation. I'm starting to realize that getting too comfortable in any one setting is just unrealistic. Being flexible and adaptable is the name of the game!
No, seriously. Please take us back.
While having your child in intensive care may be terrifying, exhausting, and unsettling, it's also very secure. Eleanor received one-to-one care from a nurse and was attended to by a legion of doctors and residents. Now I am her primary caregiver and am supported by a nurse who also oversees two or three other patients. I've spent the last 24 hours wrestling her hands away from her nasal prongs until the nurse finally removed the apparatus. Have you ever tried to reason with a six month old who is addicted to fentanyl? It's not easy! Poor baby had the shakes and nausea all last night til we gave her a bolster of morphine. Baby likes her num nums!
All joking aside, she is doing quite well and I am slowly adjusting to our newest situation. I'm starting to realize that getting too comfortable in any one setting is just unrealistic. Being flexible and adaptable is the name of the game!
Monday 20 June 2011
Tuesday June 14 2011
Thank you all for your prayers, your concern and your kind words. We appreciate it so much.
This has been your basic parenting nightmare. I've detailed everything below, and I'm warning you now that it is long. It was partially for my own records/sanity as I am still processing everything.
Ever since Eleanor was about three months, she has had some unusual hormonal issues. She grew pubic hair, her baby acne wouldn't go away, she had body odor, but nothing overly concerning, and everyone chalked it up to breastfeeding and her just settling into her own body. I took her to the doctor and he said the same and also flagged an odd distribution of fat on her cheeks, neck and shoulders. He referred me to a pediatrician to do some tests because he wanted a second opinion, and blood tests, xrays, ultrasounds etc are very traumatic on babies. The pediatrician took three weeks to get back to me and the appointment was booked for July 6th.
Over the past two weeks, she has become increasingly irritable, which I convinced myself was teething. I took her back to the doctor to confirm it was that and nothing else, and he said she was fine. I went to my weekly baby group on Wednesday last week, and I watched all the babies rolling around, sitting up, interacting with their mums and there was Eleanor, lying on my chest, whimpering. Eva, the woman who runs the group, came over and said "that child is not happy. You have to get her appointment bumped up". And I am SO grateful to her. I have been looking at photos of my daughter every night as I go to sleep, trying to justify her appearance (she's just a chubby baby...she's just a hairy baby). I have watched her delayed development (won't bear weight, hates sitting, won't roll over) and said she's just a lazy baby. I have attributed her fussiness, her bad sleeping to being a "high needs" baby. Well, it turns out she has a mass growing on her left adrenal gland that is pumping huge amounts of cortisol steroids into her body which is causing the odd appearance and (worst of all) enlarging her heart. The walls of her ventricles are 2, maybe 3 times as thick as they should be and restricting blood flow to her body.
We've been in hospital since Thursday evening and have seen endocrinologists, cardiologists, radiologists and our primary caregiver, the oncologist. Basically we have been treating her as having a stage 4 adrenal carcinoma. It's a super rare, super aggressive cancer with a very low survival rate. This is based off a CT scan that showed a large mass with a thrombus in her inferior vena cava and spots in her lungs, which means it is on the move. They originally booked surgery for tomorrow and put her on chemo to help shrink her heart, but she reacted poorly and went into cardiac arrest at 9am Sunday morning. With a few compressions they brought her back and the ICU doctor (and my favorite woman in the entire world) insisted Eleanor get the tumor out Monday morning. They moved everything around to make this happen and pulled us into a small room to tell us the risks. They warned us that some people would opt out of treatment at this point as it is so risky, and her treatment down the road is still uncertain. They warned us that she might come back with her heart hooked up to a bypass machine to take the load off. They told us it would be by the grace of God that she survived. So we had her baptized and reached out to friends and family to help get her through. She had another cardiac episode just after midnight when her nurse turned her, and the surgeon called in some extra surgeons to help out in the morning. Scary stuff.
The surgery turned out to be a huge success; the tumor came out in one piece and the part in the vena cava came out really easily, which is promising for prognosis (it might not have spread). She lost her adrenal gland and her left kidney, but they didn't have to put her on a bypass and she lost a minimal amount of blood (4 tbsp total). The biopsy results should be in tomorrow, but the most important thing for her now is to rest that big heart of hers. She has a long road to recovery, but she is like a different baby today. She's active and strong and seems to be getting better every second.
We're in such a weird place now where the scary stuff is over, but there are so many obstacles ahead.
Please keep your fingers crossed and your prayers coming for tomorrow; I will post on facebook the results of the biopsy. Oh God, I hope it's good news...
This has been your basic parenting nightmare. I've detailed everything below, and I'm warning you now that it is long. It was partially for my own records/sanity as I am still processing everything.
Ever since Eleanor was about three months, she has had some unusual hormonal issues. She grew pubic hair, her baby acne wouldn't go away, she had body odor, but nothing overly concerning, and everyone chalked it up to breastfeeding and her just settling into her own body. I took her to the doctor and he said the same and also flagged an odd distribution of fat on her cheeks, neck and shoulders. He referred me to a pediatrician to do some tests because he wanted a second opinion, and blood tests, xrays, ultrasounds etc are very traumatic on babies. The pediatrician took three weeks to get back to me and the appointment was booked for July 6th.
Over the past two weeks, she has become increasingly irritable, which I convinced myself was teething. I took her back to the doctor to confirm it was that and nothing else, and he said she was fine. I went to my weekly baby group on Wednesday last week, and I watched all the babies rolling around, sitting up, interacting with their mums and there was Eleanor, lying on my chest, whimpering. Eva, the woman who runs the group, came over and said "that child is not happy. You have to get her appointment bumped up". And I am SO grateful to her. I have been looking at photos of my daughter every night as I go to sleep, trying to justify her appearance (she's just a chubby baby...she's just a hairy baby). I have watched her delayed development (won't bear weight, hates sitting, won't roll over) and said she's just a lazy baby. I have attributed her fussiness, her bad sleeping to being a "high needs" baby. Well, it turns out she has a mass growing on her left adrenal gland that is pumping huge amounts of cortisol steroids into her body which is causing the odd appearance and (worst of all) enlarging her heart. The walls of her ventricles are 2, maybe 3 times as thick as they should be and restricting blood flow to her body.
We've been in hospital since Thursday evening and have seen endocrinologists, cardiologists, radiologists and our primary caregiver, the oncologist. Basically we have been treating her as having a stage 4 adrenal carcinoma. It's a super rare, super aggressive cancer with a very low survival rate. This is based off a CT scan that showed a large mass with a thrombus in her inferior vena cava and spots in her lungs, which means it is on the move. They originally booked surgery for tomorrow and put her on chemo to help shrink her heart, but she reacted poorly and went into cardiac arrest at 9am Sunday morning. With a few compressions they brought her back and the ICU doctor (and my favorite woman in the entire world) insisted Eleanor get the tumor out Monday morning. They moved everything around to make this happen and pulled us into a small room to tell us the risks. They warned us that some people would opt out of treatment at this point as it is so risky, and her treatment down the road is still uncertain. They warned us that she might come back with her heart hooked up to a bypass machine to take the load off. They told us it would be by the grace of God that she survived. So we had her baptized and reached out to friends and family to help get her through. She had another cardiac episode just after midnight when her nurse turned her, and the surgeon called in some extra surgeons to help out in the morning. Scary stuff.
The surgery turned out to be a huge success; the tumor came out in one piece and the part in the vena cava came out really easily, which is promising for prognosis (it might not have spread). She lost her adrenal gland and her left kidney, but they didn't have to put her on a bypass and she lost a minimal amount of blood (4 tbsp total). The biopsy results should be in tomorrow, but the most important thing for her now is to rest that big heart of hers. She has a long road to recovery, but she is like a different baby today. She's active and strong and seems to be getting better every second.
We're in such a weird place now where the scary stuff is over, but there are so many obstacles ahead.
Please keep your fingers crossed and your prayers coming for tomorrow; I will post on facebook the results of the biopsy. Oh God, I hope it's good news...
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