Well, the scans came back showing some improvement! We're not in remission, but there was definite progress and shrinkage of the lung nodules. The full report hasn't been written up by radiology, so our oncologist couldn't elaborate too much, but so far so good. He seemed pleased with the results, which is also promising, as he is notoriously pessimistic. Another plus is Eleanor's kidney function. It is back up within normal range, which is pretty awesome. Go, kidney, go!
There is talk of modifying her chemotherapy down the road, specifically the cisplatin. Apparently her hearing loss is putting her in the range where they have to make changes. I'm not entirely sure why - at this point, who cares about hearing loss? I just want her to survive. But there must be some other reason beyond deafness for the modification. We will wait and see, but I will keep pushing for the cisplatin. Anything that makes her barf that much is bound to be helping!
We also got a preliminary report back from the geneticist. While our oncologist didn't go into details, he did say that they found a mutation, and we have every reason to believe it is Li Fraumeni. Our bodies are always developing anomalies, but they have a whole bunch of resources to stop tumours growing. Eleanor doesn't have that. Her condition makes it very hard for the body to stop growing tumours, so any occurrences will continue to grow out of control. This means the risk of developing another solid tumour cancer in her lifetime is very likely. I am told it will not affect her treatment, so she has the same odds of beating this as someone without this condition, but it means lifetime supervision and Kris and/or I could be carriers as well. We will have to be tested at some point. I have to say, it's pretty handy to have a genetic counselor as one of our closest friends! She has given us tons of info already, so it has made this revelation a little more palatable.
I am quite happy about the regression of the mets in her lungs. It really is great news, and yet I can't help feeling a bit down. Genetic conditions are hard to wrestle with - I now know why they have counsellors to help people deal with them. We made a cancer baby. That's kind of sad. Well, not sad... A little sweet with a little sour, I suppose. A cancer baby with the biggest smile and the cutest feet and the most ridiculous lone tooth and the most expressive eyes and the prettiest fingers and the softest belly and the fattest cheeks... okay, a little sour with A LOT of sweet!
Wednesday 28 September 2011
Naked
I just dropped the babe off at her CT scan. I held her in my arms and kissed her cheek as she slowly dropped off to sleep. It was much more gentle than the last time, where she instantly turned into a rag doll. They anaesthesiologists ushered me out of the room and I walked the long walk back to 3B, alone. It's amazing how incredibly exposed and naked I feel without my baby in my arms, without her IV pole to maneuver. I put on Kris's sweater and hug my arms around me to feel less alone. She'll be back very soon, and results will follow. I have every reason to believe the results will be good - so why do I feel so scared? I guess I am reliving everything that went wrong last time: the GP avoiding telling me and getting so upset that she transferred our file to someone else; the shock of not 3 or 4 nodes, but 10 to 20; the offer of stopping treatment (again). We put all of our faith in the "big girl juice" and it was all leading up to today. Now we wait and see.
Sunday 25 September 2011
Goosebumps
The inside might be as black as night/ But at the end of the tunnel there's a light!
We are through the woods. Eleanor's white blood cells haven't just rebounded, they have skyrocketed (as they tend to do because she is so amazing)! I love my baby girl. She's got some kick ass bone marrow that is almost as resilient as she is! Another plus - her blood pressure is within normal range... This is a very strange occurrence that no one can quite figure out. Hers has always been on the high side, even with medication. It came down, so they held off on the medication, and three days later, it's still down. Amazing. Hopefully it will stay down and we will have one less med and one less worry!
We've had an interesting weekend. It's been very busy on the ward with every bed filled and nurses calling in sick. Everyone is tense. Eleanor had a rough night on Friday, and I was up til 1am battling her NG tube. It clogged and when they inserted a new one, it clogged again. They finally got one to work and we both passed out. She woke up at 4am to be sick, and I called the nurse to help me change the sheets. I rang the bell and no one came. I rang it again and the charge nurse came in. She had a no-nonsense approach to the situation and Eleanor was changed and back in bed in no time. Our nurse came in shortly afterwards and noted a glazed look in Eleanor's eyes. She asked the resident to come in and take a look, to which the charge nurse replied "She's breathing, she's fine. Katie (the resident) has more important things to deal with." It was pretty tense, and when I went out into the hallway a few minutes later, there was a crew of doctors and nurses gathered around room 14. A new admission, it seemed.
The next morning, I walked by room 14 and all the blinds were drawn and there was a note on the door saying "Rest needed. Please check in at the nurses station". Not a big deal, but there was something unsettling about it. There were lots of stressed out people in the playroom and the parent's lounge. Later that afternoon, Kris was chatting to our nurse about the new family in room 14 and how he wanted to introduce himself. Our nurse nixed the idea as the patient in that room had passed away that morning. She told us it wasn't an oncology patient and it was expected. And that was all. Someone died two doors down from us. There was a dead body with a grieving family in the room down the hall. I didn't leave the room yesterday.
Death is the only thing certain in life. Hospitals are often where death occurs. I know this, and yet, I feel safe from death in 3B. Kids die in ICU. Kids die in surgery. Kids die at Canuck Place when no other treatment is available. Kids don't die two doors down from where I live. But that's what happened. I don't feel safe. I know Eleanor is far from death right now, even if her prognosis gets worse. She's not going to die tomorrow, or next week, or even next month. So why is she two doors down from someone who died?
I managed to coerce Kris into staying with me til late last night. He went to get water from the kitchen around 10pm and ran into another dad. They started chatting about the events of the day and then froze when they heard music coming from the playroom. It was a toy that Eleanor loves - a little piano that plays three different classical music songs when you press the keys. It also has a rattle and is small enough for her little hands. They heard it play two songs and then went into the empty, dark playroom to find it. The second they walked in, it stopped. No one was in there. Kris's arms prickled with goosebumps and the other dad just smiled, "It's not the first time" he said nonchalantly. I didn't sleep much last night.
The logical explanation is that the toys shifted in the toy box and that was enough force to make it play, but it all feels a bit weird. I hope the family that lost their child yesterday are at peace. I suspect they are as the world feels much calmer, much quieter today. I said a little prayer for them as I watched my daughter "puppy-dog" sleep last night. She twitched like she was chasing bunnies, but was still peaceful. I am thankful for the peace. But I will never, ever let them put us in room 14.
Ever.
We are through the woods. Eleanor's white blood cells haven't just rebounded, they have skyrocketed (as they tend to do because she is so amazing)! I love my baby girl. She's got some kick ass bone marrow that is almost as resilient as she is! Another plus - her blood pressure is within normal range... This is a very strange occurrence that no one can quite figure out. Hers has always been on the high side, even with medication. It came down, so they held off on the medication, and three days later, it's still down. Amazing. Hopefully it will stay down and we will have one less med and one less worry!
Resting comfortably
We've had an interesting weekend. It's been very busy on the ward with every bed filled and nurses calling in sick. Everyone is tense. Eleanor had a rough night on Friday, and I was up til 1am battling her NG tube. It clogged and when they inserted a new one, it clogged again. They finally got one to work and we both passed out. She woke up at 4am to be sick, and I called the nurse to help me change the sheets. I rang the bell and no one came. I rang it again and the charge nurse came in. She had a no-nonsense approach to the situation and Eleanor was changed and back in bed in no time. Our nurse came in shortly afterwards and noted a glazed look in Eleanor's eyes. She asked the resident to come in and take a look, to which the charge nurse replied "She's breathing, she's fine. Katie (the resident) has more important things to deal with." It was pretty tense, and when I went out into the hallway a few minutes later, there was a crew of doctors and nurses gathered around room 14. A new admission, it seemed.
The next morning, I walked by room 14 and all the blinds were drawn and there was a note on the door saying "Rest needed. Please check in at the nurses station". Not a big deal, but there was something unsettling about it. There were lots of stressed out people in the playroom and the parent's lounge. Later that afternoon, Kris was chatting to our nurse about the new family in room 14 and how he wanted to introduce himself. Our nurse nixed the idea as the patient in that room had passed away that morning. She told us it wasn't an oncology patient and it was expected. And that was all. Someone died two doors down from us. There was a dead body with a grieving family in the room down the hall. I didn't leave the room yesterday.
Death is the only thing certain in life. Hospitals are often where death occurs. I know this, and yet, I feel safe from death in 3B. Kids die in ICU. Kids die in surgery. Kids die at Canuck Place when no other treatment is available. Kids don't die two doors down from where I live. But that's what happened. I don't feel safe. I know Eleanor is far from death right now, even if her prognosis gets worse. She's not going to die tomorrow, or next week, or even next month. So why is she two doors down from someone who died?
I managed to coerce Kris into staying with me til late last night. He went to get water from the kitchen around 10pm and ran into another dad. They started chatting about the events of the day and then froze when they heard music coming from the playroom. It was a toy that Eleanor loves - a little piano that plays three different classical music songs when you press the keys. It also has a rattle and is small enough for her little hands. They heard it play two songs and then went into the empty, dark playroom to find it. The second they walked in, it stopped. No one was in there. Kris's arms prickled with goosebumps and the other dad just smiled, "It's not the first time" he said nonchalantly. I didn't sleep much last night.
I ain't afraid of no ghost...
The logical explanation is that the toys shifted in the toy box and that was enough force to make it play, but it all feels a bit weird. I hope the family that lost their child yesterday are at peace. I suspect they are as the world feels much calmer, much quieter today. I said a little prayer for them as I watched my daughter "puppy-dog" sleep last night. She twitched like she was chasing bunnies, but was still peaceful. I am thankful for the peace. But I will never, ever let them put us in room 14.
Ever.
Friday 23 September 2011
Fever
Eleanor's fever is persisting. Every time I think it is under control, it pops up, seemingly out of nowhere. She had blood cultures done when it first spiked three days ago and they put her on antibiotics right away. That didn't seem to work, so they put her on a new antibiotic and have done more blood cultures this morning.
We never had a thermomater in the house when I was growing up. My mum and dad used to just feel my forehead to judge how sick I was. It seemed to work for them, but I thought they were crazy to rely on intuition. Now that I have experienced my own child with a fever, I get it. Her whole being is consumed by fire. Her breath is hot and ragged. Her head is sweaty. Her skin is scorching. Her cries are laboured and are never ending. It seems so exhausting. I hope these antibiotics work for her. She hasn't slept much this week and she really needs to rest, God love her.
She is getting better, despite the fever. Her blood counts are rising again, which will help her fight off whatever is ailing her. Every now and then we see glimmers of a happier girl, and it eases our worried minds. She loves playing peek-a-boo with her dad's hat and has started showing an interest in that again. It's better than her playing with all the tubes! She has a really bad habit of pulling on them when she is high on morphine. I turned my back for a few minutes the other night and this is the mess she created...
We never had a thermomater in the house when I was growing up. My mum and dad used to just feel my forehead to judge how sick I was. It seemed to work for them, but I thought they were crazy to rely on intuition. Now that I have experienced my own child with a fever, I get it. Her whole being is consumed by fire. Her breath is hot and ragged. Her head is sweaty. Her skin is scorching. Her cries are laboured and are never ending. It seems so exhausting. I hope these antibiotics work for her. She hasn't slept much this week and she really needs to rest, God love her.
She is getting better, despite the fever. Her blood counts are rising again, which will help her fight off whatever is ailing her. Every now and then we see glimmers of a happier girl, and it eases our worried minds. She loves playing peek-a-boo with her dad's hat and has started showing an interest in that again. It's better than her playing with all the tubes! She has a really bad habit of pulling on them when she is high on morphine. I turned my back for a few minutes the other night and this is the mess she created...
Such a junkie!
Wednesday 21 September 2011
Sound of Silence
Sweet, sweet sleep.
After 24 hours of continuous crying and moaning and struggling to manage secretions, baby Eleanor is finally resting.
What an ordeal.
I watched the hours tick slowly by last night. I alternated patting her bum, stroking her hair and resting a heavy hand on her tummy. Nothing worked. I tried rocking her, but it compromised her airway. I held her upright and bounced her, and that seemed to work, so at 2am I put her in the carrier and bid my own sleep goodbye. She fell asleep almost instantly, so I swayed her back and forth for almost an hour. It brought back memories of our first night at BCCH and I had to keep her quiet to keep her alive. I swayed for eight hours that morning; last night was nothing compared to that. Anyway, I swayed for almost an hour, but I learned pretty quickly that there is nowhere for vomit to go when she's in the carrier. It was all over both of us. I got us cleaned up and put her back in bed. Exhaustion was starting to get the best of me and I shed a few tears to the nurse and she got the resident to come talk to me. The resident said the same thing as the nurse and the same thing as our oncologist - the pain team are unwilling to administer anything to her until the morning. We would just have to wait.
It gets a bit hazy after 5am. I must have dropped off for a bit, but I am unsure if Eleanor slept at all. I think I just tuned out her persistent crying. I woke up a little after 7am and got us ready for her CT scan and waited for the pain team. As our appointment time came and went and there was no sign of anyone, my frustration levels escalated. Apparently her mucousitis would have interfered with the scan of her lungs, so the powers-that-be cancelled it. Fine, let's just get her pain sorted out. The CMI was eventually hung at noon and did nothing. The decision was finally made to turn it up at 6pm and she stopped crying almost instantly. She smiled at the nurse and drifted off to sleep like a little angel. Unbelievable. What a day. I'm going to bed.
Oh, but before I do, a big thank you to Yung for dropping off some yummy tea and sympathy, Jean for the care package (I would have starved today if it wasn't for the Lara Bars and chocolate!) and Jen for the herbal tea and help with my lasgana. Thank you ladies! You made today much, MUCH better! Little rays of sunshine in an otherwise gloomy day!
After 24 hours of continuous crying and moaning and struggling to manage secretions, baby Eleanor is finally resting.
What an ordeal.
I watched the hours tick slowly by last night. I alternated patting her bum, stroking her hair and resting a heavy hand on her tummy. Nothing worked. I tried rocking her, but it compromised her airway. I held her upright and bounced her, and that seemed to work, so at 2am I put her in the carrier and bid my own sleep goodbye. She fell asleep almost instantly, so I swayed her back and forth for almost an hour. It brought back memories of our first night at BCCH and I had to keep her quiet to keep her alive. I swayed for eight hours that morning; last night was nothing compared to that. Anyway, I swayed for almost an hour, but I learned pretty quickly that there is nowhere for vomit to go when she's in the carrier. It was all over both of us. I got us cleaned up and put her back in bed. Exhaustion was starting to get the best of me and I shed a few tears to the nurse and she got the resident to come talk to me. The resident said the same thing as the nurse and the same thing as our oncologist - the pain team are unwilling to administer anything to her until the morning. We would just have to wait.
It gets a bit hazy after 5am. I must have dropped off for a bit, but I am unsure if Eleanor slept at all. I think I just tuned out her persistent crying. I woke up a little after 7am and got us ready for her CT scan and waited for the pain team. As our appointment time came and went and there was no sign of anyone, my frustration levels escalated. Apparently her mucousitis would have interfered with the scan of her lungs, so the powers-that-be cancelled it. Fine, let's just get her pain sorted out. The CMI was eventually hung at noon and did nothing. The decision was finally made to turn it up at 6pm and she stopped crying almost instantly. She smiled at the nurse and drifted off to sleep like a little angel. Unbelievable. What a day. I'm going to bed.
Oh, but before I do, a big thank you to Yung for dropping off some yummy tea and sympathy, Jean for the care package (I would have starved today if it wasn't for the Lara Bars and chocolate!) and Jen for the herbal tea and help with my lasgana. Thank you ladies! You made today much, MUCH better! Little rays of sunshine in an otherwise gloomy day!
Tuesday 20 September 2011
Lucky 13
Today is Day 13. Today is her "bottom out" day; the day her counts hit absolute zero.
We woke up late and had to hustle to her audiology appointment. It went poorly in more ways than one. The first part was tough because her hearing is very clearly going. It is just the high frequency range she can't hear, but she will need extensive speech therapy to be able to pronounce "f", "sh" and "tss" sounds properly. The second part of her test was a struggle because she clearly was starting to feel lousy. She fell asleep the moment I placed her back in her bed.
We had lots of visitors, which was nice. Eleanor was quite courteous for the most part, and her nurse and I were patting ourselves on the back. "Look at how low her counts are!" we exclaimed. "She is doing pretty well!" which really means we are doing well. And no sooner had we decided that she wasn't going to need CMI (continous morphine infusion) than she went south. Fast. She has been moaning for the past six hours and she spiked a fever. They gave her some Tylenol and she has been getting hydromorphone every two hours. She'll start CMI in the morning. She seems to take some comfort from being held against my shoulder. I guess gravity helps keep the mucous down. My clothes are covered in it. Her whole body is hot. Her breath is hot. Can you hear me sighing?
It could be worse. I wrote a post while we were in ICU about the breast pump ordeal. Well, the woman I was "sharing" the pump with is back in hospital with her now-three-month old baby girl. Her daughter is not doing well and they are being flown to Edmonton tomorrow to wait for a heart transplant. My heart breaks for her and her family. Edmonton is far and transplants are scary. Nancy, if you are reading this, I pray that Abi will thrive and that you, Jamie and Hailey will find the strength to get through this next chapter. If Abi has one-tenth of the gumption and determination that her mother has, I am sure she will be fine.
Right. So much for my early night. It has taken me almost four hours to write this as Eleanor has been unsettled since I put her to bed. Tomorrow is Day 14 and today will be distant history, until next round, of course.
We woke up late and had to hustle to her audiology appointment. It went poorly in more ways than one. The first part was tough because her hearing is very clearly going. It is just the high frequency range she can't hear, but she will need extensive speech therapy to be able to pronounce "f", "sh" and "tss" sounds properly. The second part of her test was a struggle because she clearly was starting to feel lousy. She fell asleep the moment I placed her back in her bed.
We had lots of visitors, which was nice. Eleanor was quite courteous for the most part, and her nurse and I were patting ourselves on the back. "Look at how low her counts are!" we exclaimed. "She is doing pretty well!" which really means we are doing well. And no sooner had we decided that she wasn't going to need CMI (continous morphine infusion) than she went south. Fast. She has been moaning for the past six hours and she spiked a fever. They gave her some Tylenol and she has been getting hydromorphone every two hours. She'll start CMI in the morning. She seems to take some comfort from being held against my shoulder. I guess gravity helps keep the mucous down. My clothes are covered in it. Her whole body is hot. Her breath is hot. Can you hear me sighing?
It could be worse. I wrote a post while we were in ICU about the breast pump ordeal. Well, the woman I was "sharing" the pump with is back in hospital with her now-three-month old baby girl. Her daughter is not doing well and they are being flown to Edmonton tomorrow to wait for a heart transplant. My heart breaks for her and her family. Edmonton is far and transplants are scary. Nancy, if you are reading this, I pray that Abi will thrive and that you, Jamie and Hailey will find the strength to get through this next chapter. If Abi has one-tenth of the gumption and determination that her mother has, I am sure she will be fine.
Right. So much for my early night. It has taken me almost four hours to write this as Eleanor has been unsettled since I put her to bed. Tomorrow is Day 14 and today will be distant history, until next round, of course.
Friday 16 September 2011
Near Miss
Be still my beating heart!
Eleanor started to struggle a little bit today. She had restless naps today and was throwing up a bit more than usual. She was still in good spirits and loved all the visitors that came by, but it was becoming apparant that she wasn't feeling super hot. After one upsetting mucous-ejection, Kris insisted she get some pain killers. I didn't say anything; I hate this part. I know it's that time and I hate having to give my child opiates. We chatted with our nurse about getting her morphine, but she gets so itchy and crabby on morphine. They decided to give her hydromorphone, which is a hypo-allergenic version of morphine. It doesn't have the side effects and is considerably stronger.
We made dinner while we waited for the drug to be approved and sat outside her room to eat our "feedbag" salad. Eleanor refused to settle and would wake up every few minutes. I kept going in to pat her bum and help her sleep. Finally at 6:45 our nurse came in to give her the hydromorphone. It was a low dose and was set to infuse over a 20 minute period. When the machine beeped to indicate it was complete, I came back in to the room to silence it and check on the baby. Her chest was barely moving and her eyes... oh God. Her eyes were rolling around in her head. I lifted her arm and dropped it to see if she would wake. She didn't stir. I went to ring the bell for the nurse and I contemplated pulling the alarm out of the wall. No, be calm, a voice said in my head. She is still breathing. I rang the bell and a nurse came immediatly. "She doesn't look right" I heard my voice say, though it sounded tinny and far away. She took one look at Eleanor and said, "I'll get the doctor".
The next thing I know, our room is filled with nurses and the doctor. The lights are flicked on and equipment is being hauled in. Commands like "get the bag ready" and "what are her sats? Get the sat monitor on her" were being called out. I removed her foot from her new green sleeper so they could put the monitor on her and stepped out of the way. Tap, tap, tap. "Hey Eleanor. It's time to wake up!" Tap, tap, tap. "Hey little girl!" Shake, shake, shake. Nurses were standing at the ready with difibulator pads and breathing contraptions. "Eleanor?" Her eyes flew open and looked wildly at all the faces above her. A sigh. A breath of relief. From me? From the doctor? I'm not sure. It felt like the walls of the room were sighing out the tension. Almost instantly her eyes fluttered closed. "Oh no you don't!" laughed the doctor, and rubbed her tummy to keep her awake.
For the next half hour, we kept her awake. She was so stoned, but her sats were good, her heartrate was perfect and her blood pressure was a little low, but still decent. The staff reviewed the dose and why she would react so strongly to this drug. No one really knows, but they are cutting the dose in half next time, which is a big relief! What a fright we had. My poor little bear! I hate seeing her like that, all wide-eyed but not seeing. She's fine now, snoring away next to me, and is definitely feeling no pain.
Eleanor started to struggle a little bit today. She had restless naps today and was throwing up a bit more than usual. She was still in good spirits and loved all the visitors that came by, but it was becoming apparant that she wasn't feeling super hot. After one upsetting mucous-ejection, Kris insisted she get some pain killers. I didn't say anything; I hate this part. I know it's that time and I hate having to give my child opiates. We chatted with our nurse about getting her morphine, but she gets so itchy and crabby on morphine. They decided to give her hydromorphone, which is a hypo-allergenic version of morphine. It doesn't have the side effects and is considerably stronger.
We made dinner while we waited for the drug to be approved and sat outside her room to eat our "feedbag" salad. Eleanor refused to settle and would wake up every few minutes. I kept going in to pat her bum and help her sleep. Finally at 6:45 our nurse came in to give her the hydromorphone. It was a low dose and was set to infuse over a 20 minute period. When the machine beeped to indicate it was complete, I came back in to the room to silence it and check on the baby. Her chest was barely moving and her eyes... oh God. Her eyes were rolling around in her head. I lifted her arm and dropped it to see if she would wake. She didn't stir. I went to ring the bell for the nurse and I contemplated pulling the alarm out of the wall. No, be calm, a voice said in my head. She is still breathing. I rang the bell and a nurse came immediatly. "She doesn't look right" I heard my voice say, though it sounded tinny and far away. She took one look at Eleanor and said, "I'll get the doctor".
The next thing I know, our room is filled with nurses and the doctor. The lights are flicked on and equipment is being hauled in. Commands like "get the bag ready" and "what are her sats? Get the sat monitor on her" were being called out. I removed her foot from her new green sleeper so they could put the monitor on her and stepped out of the way. Tap, tap, tap. "Hey Eleanor. It's time to wake up!" Tap, tap, tap. "Hey little girl!" Shake, shake, shake. Nurses were standing at the ready with difibulator pads and breathing contraptions. "Eleanor?" Her eyes flew open and looked wildly at all the faces above her. A sigh. A breath of relief. From me? From the doctor? I'm not sure. It felt like the walls of the room were sighing out the tension. Almost instantly her eyes fluttered closed. "Oh no you don't!" laughed the doctor, and rubbed her tummy to keep her awake.
For the next half hour, we kept her awake. She was so stoned, but her sats were good, her heartrate was perfect and her blood pressure was a little low, but still decent. The staff reviewed the dose and why she would react so strongly to this drug. No one really knows, but they are cutting the dose in half next time, which is a big relief! What a fright we had. My poor little bear! I hate seeing her like that, all wide-eyed but not seeing. She's fine now, snoring away next to me, and is definitely feeling no pain.
Thursday 15 September 2011
Quick Clinical Update
On Monday she learned how to bang a drum with the music therapist and worked her pincer grasp with the occupational therapist. She had another session yesterday with physio and OT and it's amazing to see how strong she is getting. She's not normal nine-month old baby strong, but she is getting there. She sat up for a good 30 minutes today with minimal to no assistance. Everyone on the ward is talking about her. And we've learned that she's definitely not in to rolling. I think that ship has sailed. She will have to figure out another way to locomote. Her legs and arms are very weak still, so crawling and walking will be challenging, but not impossible. She has become very vocal over the past week - probably because daddy is here and she is trying to mimic his mile-a-minute speech pattern! Sometimes she babbles away and it sounds like words. Everyone in the room will stop and look at each other like, "what did she just say?" Eating solids are still a challenge. She seems to be okay with oatmeal, but most everything else I have tried her with has come back up. Yuck.
We are in this grace period between chemo and when her blood counts drop and we are enjoying every second of it. Lord, this child loves her daddy! It's really sweet to see them together. Kris and I have felt like ships passing in the night for the past little while, so it is nice to be able to spend time together as a family, even if we are confined to the ward. It's been an incredible week with our little angel.
We are in this grace period between chemo and when her blood counts drop and we are enjoying every second of it. Lord, this child loves her daddy! It's really sweet to see them together. Kris and I have felt like ships passing in the night for the past little while, so it is nice to be able to spend time together as a family, even if we are confined to the ward. It's been an incredible week with our little angel.
Tuesday 13 September 2011
Chatty-Chatty Self-Self
I love fall. It's a time of new beginnings and fresh starts. The crisp, clean air, the crunch of leaves underfoot, the smell of new notebooks... For the past several years, fall has meant fall race season. I love racing in the fall more than anything. All summer long, I put in long hours and mile after sweaty mile on the pavement. I burn through running shoes faster than I can make enough money to buy a new pair, and it is all in anticipation of lining up with thousands of like-minded idiots who run in circles so they can live longer. It's a beautiful thing. I love how I get faster when the temperature dips. All of a sudden my legs are lighter, my lungs are bigger and my heart sings with each step.
I hit the trails today with Krystal and for the first 3km, I was flying. I had that sense of jubilation, of freedom that I get with fall running. Then cold, hard science kicked in and said, "Hey jackass. You didn't run at all this summer, so who are you kidding? Here are some cramps and wheezing lungs. Sort it out." We cut our run short and I came back to the hospital.
Like this run, I am starting to struggle. I feel like those first few easy miles are over, and now I have to contend with some ugly stuff. I think a lot of it has to do with the changing seasons. I have not just spent a month in hospital, or even a few months. I have spent an entire season here. That is a lot to swallow. Don't get me wrong; I am happy to hold and comfort my baby girl. Seeing her smile and grow and get better is incredible - it doesn't matter where you are. But selfishly speaking, it is hard on me to be here. I'm not sick, and yet I live in a hospital. I don't have a job, I don't have a home, I don't have a husband half the time and the loss of self is disarming. I feel powerless with a loss of control. I don't decide anything anymore.
I'm not afraid. I have a very good support team of friends and family. I also have the best and brightest second line sitting on the bench, and they are the staff at the hospital. But it is up to me, really. I can fall off the pace and let my head win, or I can put one foot in front of the other and run to the next crossroad. Once I make it there, I can lift my eyes up and pick out another milestone, and set all my energy to reaching that point.
This is a marathon, and distance running is 90% mental and the other 10% is (also) mental.
I hit the trails today with Krystal and for the first 3km, I was flying. I had that sense of jubilation, of freedom that I get with fall running. Then cold, hard science kicked in and said, "Hey jackass. You didn't run at all this summer, so who are you kidding? Here are some cramps and wheezing lungs. Sort it out." We cut our run short and I came back to the hospital.
Like this run, I am starting to struggle. I feel like those first few easy miles are over, and now I have to contend with some ugly stuff. I think a lot of it has to do with the changing seasons. I have not just spent a month in hospital, or even a few months. I have spent an entire season here. That is a lot to swallow. Don't get me wrong; I am happy to hold and comfort my baby girl. Seeing her smile and grow and get better is incredible - it doesn't matter where you are. But selfishly speaking, it is hard on me to be here. I'm not sick, and yet I live in a hospital. I don't have a job, I don't have a home, I don't have a husband half the time and the loss of self is disarming. I feel powerless with a loss of control. I don't decide anything anymore.
I'm not afraid. I have a very good support team of friends and family. I also have the best and brightest second line sitting on the bench, and they are the staff at the hospital. But it is up to me, really. I can fall off the pace and let my head win, or I can put one foot in front of the other and run to the next crossroad. Once I make it there, I can lift my eyes up and pick out another milestone, and set all my energy to reaching that point.
This is a marathon, and distance running is 90% mental and the other 10% is (also) mental.
Saturday 10 September 2011
1/3 + 2/3 = ...
My daughter is nine months old today and she has spent exactly 1/3 of her life in hospital. Happy nine month birthday, little bear! Happy (?) three months in hospital! She spent the day with her Grandpa while mummy got out to enjoy the sunshine. He must have bored her with his stories as she was fast asleep when we returned. Nice one, Dave!
Eleanor's testosterone level dropped again, which is wonderful news. Our doctor, who was dubbed by another family as Dr. Doom and Gloom, says it is very, very likely that we will see an improvement in her lungs on the next scan. For him to say something positive is a big deal, so we are allowing ourselves a little pleasure in that. She is quite sick from the cisplatin, but that should subside in a day or two She puffed up a whole kilogram from the fluid they have to run when she gets chemo, but has been peeing (literally) like a racehorse. I wouldn't bring this up (who really wants to hear about baby pee?), but I am so proud of her remaining kidney. She hasn't needed any help flushing the excess hydration since a week post-op. Go little kidney, go!
Eleanor rubbed off the last of her eyelashes today. They have been thinning for a long time, but now they are all gone. She had crazy long, dark eyelashes which must have been part of the testosterone, because she did NOT get them from Kris or myself. I'm a little bit sad to see them go. Her hair is thinning elsewhere, but she is far from hairless, though I'm sure she will get there eventually. Then she will be my little bald bear.
Kris has finished his antibiotics and is feeling much better. He will be back here tomorrow and will stay for a whole week. I am looking forward to this as our last visit was cut so short. And because he does our laundry... so much laundry!
Eleanor's testosterone level dropped again, which is wonderful news. Our doctor, who was dubbed by another family as Dr. Doom and Gloom, says it is very, very likely that we will see an improvement in her lungs on the next scan. For him to say something positive is a big deal, so we are allowing ourselves a little pleasure in that. She is quite sick from the cisplatin, but that should subside in a day or two She puffed up a whole kilogram from the fluid they have to run when she gets chemo, but has been peeing (literally) like a racehorse. I wouldn't bring this up (who really wants to hear about baby pee?), but I am so proud of her remaining kidney. She hasn't needed any help flushing the excess hydration since a week post-op. Go little kidney, go!
Eleanor rubbed off the last of her eyelashes today. They have been thinning for a long time, but now they are all gone. She had crazy long, dark eyelashes which must have been part of the testosterone, because she did NOT get them from Kris or myself. I'm a little bit sad to see them go. Her hair is thinning elsewhere, but she is far from hairless, though I'm sure she will get there eventually. Then she will be my little bald bear.
Kris has finished his antibiotics and is feeling much better. He will be back here tomorrow and will stay for a whole week. I am looking forward to this as our last visit was cut so short. And because he does our laundry... so much laundry!
Wednesday 7 September 2011
Laundry
My support team is sick. Kris is sick, my mum is sick and this means my laundry doesn't get done. I have organised our little room so that I can hide the growing pile of dirty clothes behind a suitcase, which is behind a rocking chair. Out of sight, out of mind. Nothing in there is stinky, so no offending odours can give me away. It just keeps growing and growing.
Like my gross pile of clothes, Eleanor has been busy accumulating things of her own. I like to call it the "anything that can wrong, will go wrong" laundry list of maladies. If any parent had anyone of these things, it would be traumatizing, and Eleanor has all of them.
On a totally unrelated, but very important note, I must say a big heartfelt THANK YOU to Natalie DeGoey and her friends at Best Buy who hooked me up with a brand new netbook! It's very exciting to use a computer again, though it is taking me awhile to get used to it. It's been a long time since I have used a computer!
Like my gross pile of clothes, Eleanor has been busy accumulating things of her own. I like to call it the "anything that can wrong, will go wrong" laundry list of maladies. If any parent had anyone of these things, it would be traumatizing, and Eleanor has all of them.
- Cancer
- Cushing's Syndrome
- Missing kidney
- Enlarged heart
- High blood pressure
- High frequency hearing loss
- Blood clot in heart
On a totally unrelated, but very important note, I must say a big heartfelt THANK YOU to Natalie DeGoey and her friends at Best Buy who hooked me up with a brand new netbook! It's very exciting to use a computer again, though it is taking me awhile to get used to it. It's been a long time since I have used a computer!
Monday 5 September 2011
Survivor
We found a survivor.
Her name is Hailey. She was two years old when diagnosed. She showed the same symptoms and had a tumor on the same (left) adrenal gland. She had it removed and went through six rounds of chemo and had a couple of surgeries to remove the numerous mets in her lungs. My heart is soaring thinking about her. Her odds were so low and she is a healthy, happy, cancer-free six year old.
We need these happy stories more than ever these days. As we approach the next round of chemo, we have to hold hope close to our hearts and pray for some improvement in her condition. We've had a couple of setbacks this week; nothing major but enough to rattle our confidence. We were preparing to be discharged on Friday, when the results from her heart echo showed a clot in one of her valves. It was from her central line and moved into her heart. It's not causing any problems right now, but it does have the potential to break off and move to her lungs, which is quite dangerous. They put her on an anti-coagulant and kept her in hospital for monitoring. It's so hard not to be disappointed. Kris is taking it especially hard and has gotten himself sick over it. Well, maybe not, but either way he has come down with a cold and can't be in the hospital. Kind of a bummer as it is the long weekend and he could've had a whole extra day here.
Another setback is Eleanor's weight. She has been steadily dropping weight since she came, which is good, as she was technically obese, but now she has fallen off her percentile for height and weight. She is now being supplemented with overnight feeds and I can't keep up to her needs and they won't provide me with donor milk because she can tolerate formula and the need is greater elsewhere. I am gutted about this. I am pumping as much as I can so that they can do half breastmilk-half formula, but I still feel like such failure. It was my milk (plus the steroids) that got her so fat in the first place! Oh well. The important thing is that she eats/gets nourishment from somewhere.
These are just minor setbacks, really nothing to be worried about, but coupled with the unknown makes for an antsy mummy. Provided this coming round goes well and her scans come back showing improvement, we can bank on another six rounds of chemo. That means another nine months in hospital. Holy shit. We are approaching our three month mark, and I am already starting to lose my mind! But if that is what it takes to get my baby healthy, then I'm fine with it. Sometimes it feels like we have so many obstacles in the way, and time moves at such weird intervals, I just don't know if I'm coming or going. It doesn't help that we are stuck inside on the most beautiful weekend of the summer! Bring on the cold and the rain; at least then I won't feel like I am missing out on anything!
Her name is Hailey. She was two years old when diagnosed. She showed the same symptoms and had a tumor on the same (left) adrenal gland. She had it removed and went through six rounds of chemo and had a couple of surgeries to remove the numerous mets in her lungs. My heart is soaring thinking about her. Her odds were so low and she is a healthy, happy, cancer-free six year old.
We need these happy stories more than ever these days. As we approach the next round of chemo, we have to hold hope close to our hearts and pray for some improvement in her condition. We've had a couple of setbacks this week; nothing major but enough to rattle our confidence. We were preparing to be discharged on Friday, when the results from her heart echo showed a clot in one of her valves. It was from her central line and moved into her heart. It's not causing any problems right now, but it does have the potential to break off and move to her lungs, which is quite dangerous. They put her on an anti-coagulant and kept her in hospital for monitoring. It's so hard not to be disappointed. Kris is taking it especially hard and has gotten himself sick over it. Well, maybe not, but either way he has come down with a cold and can't be in the hospital. Kind of a bummer as it is the long weekend and he could've had a whole extra day here.
Another setback is Eleanor's weight. She has been steadily dropping weight since she came, which is good, as she was technically obese, but now she has fallen off her percentile for height and weight. She is now being supplemented with overnight feeds and I can't keep up to her needs and they won't provide me with donor milk because she can tolerate formula and the need is greater elsewhere. I am gutted about this. I am pumping as much as I can so that they can do half breastmilk-half formula, but I still feel like such failure. It was my milk (plus the steroids) that got her so fat in the first place! Oh well. The important thing is that she eats/gets nourishment from somewhere.
These are just minor setbacks, really nothing to be worried about, but coupled with the unknown makes for an antsy mummy. Provided this coming round goes well and her scans come back showing improvement, we can bank on another six rounds of chemo. That means another nine months in hospital. Holy shit. We are approaching our three month mark, and I am already starting to lose my mind! But if that is what it takes to get my baby healthy, then I'm fine with it. Sometimes it feels like we have so many obstacles in the way, and time moves at such weird intervals, I just don't know if I'm coming or going. It doesn't help that we are stuck inside on the most beautiful weekend of the summer! Bring on the cold and the rain; at least then I won't feel like I am missing out on anything!
Thursday 1 September 2011
September
I seem to have destroyed my thumbs from spending so much time on my phone. It hurts to type, but I wanted to give a quick update. Eleanor is doing much better after a fairly terrifying week. She was really doped up on morphine to manage her pain, and they have carefully weaned her off over the past 48 hours. The docs are saying we can go home for the weekend but she has to be off the morphine (check!) and back on the boob (oral feedings). The latter is a bit of a problem, as she is not super interested in eating still. Her blood counts are up and it's quite clear that she will be ready for round 4 by Tuesday. Where is the time going? It's September today! We are very quickly approaching 3 months in hospital. Mind boggling.
More ibuprofen and rest for my thumbs now...
More ibuprofen and rest for my thumbs now...
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