What a great weekend. It's so lovely to have a "normal" baby! She's got smiles for everyone, she bounces when she's excited and she's enjoying her adventures in solid foods. Last night when I pulled her out of the tub I anticipated a freak out, so I quickly improvised a silly game. I buried her in a stack of towels and repeated "bundle bundle bundle!" and her mouth opened really wide and her eyes looked all crazy. My heart sank and I pulled off the towels to see what was going on, and she was vibrating she was giggling so hard! I thought something was wrong! I have never seen this happy baby before. I feel like we need a proper introduction. So, hello happy baby Eleanor, nice to meet you. My name is Kate and I was mother to a very unhappy baby for 6 months. Her name was Eleanor too, but she wasn't like you at all. She had sad eyes and a swollen body and was in a lot of pain. She was a brave, strong girl and we loved her very much. That said, we are very happy to replace her with you! It's impossible to think I could love anything more than you, happy baby Eleanor. I am very pleased to be your Mummy.
:-D
Her counts are way up so she will be starting chemo this afternoon. She's 6 days off her protocol, which isn't too shabby, and she is repeating the same dose as last time. This means we can expect the same results as last time, which is (for lack of a better word) nice. No surprises this time.
It's kind of crazy that we have been here a month and a half and she is just starting her second of eight rounds of chemo. This treatment is going to take a long time. Right now it feels like we are fighting an invisible foe. The tumor is gone so we are battling the microscopic stuff and those shadows in her lungs. I have a hard time wrapping my head around the fact that those residual cells could divide and conquer other parts of her. It just takes one cranky cancerous cell to ruin a perfectly good organ. Cancer stinks. She is due for a CT scan after this round, which will tell us how she is responding and if those shadows are still there. Anyway I'm getting ahead of myself. Let's just get through today and worry about tomorrow when tomorrow comes. Today is for drooly laughing babies and to all those people who told me "not to worry - it gets better", I finally know what you are talking about! Babies CAN be fun!
Monday, 25 July 2011
Saturday, 23 July 2011
Day Passes!
We have had an amazing couple of days. Eleanor's counts are up, but her platelets still aren't high enough to start chemo, so the sun has been shining and Mummy, Daddy and Baby have been on the loose! Yesterday started off with a visit from Auntie Trudi, which is always a delight but was made even sweeter because she brought homemade carrot cake. I adore her carrot cake, and I have been very good and have not eaten all of it myself. Yet. No sooner had Trudi jetted off and Eleanor went down for a snooze when a few friends from work popped in with lunch from Nuba! It was great to see them and get caught up on all the new endeavors at FTC. Certainly never a dull moment, and many of their projects brought a tear to my eye. I really love(d) working there. It's nice to be proud of what I do/did.
Anyway, after lunch we packed the baby up and headed off to the aquarium. We were a bit nervous that she might be too young, but she seemed to enjoy it. We held her up to the tanks and she was mesmerized by the brightly colored fish. She especially loved all the kids running around her. A lot of them stopped to stare at her, which we figured might happen. There is really no way to hide her NG tube, so...yeah. No big deal.
We got back to the hospital at 6pm and baby girl had a hard time going to sleep, so today we made sure we got out early. We drove down to Granville Island and spent a good few hours wandering around the shops and down the seawall. Eleanor slept most of the time, which was fine with us. It was a beautiful day here in Vancouver and it was wonderful to be out enjoying the sunshine. And I only cried twice! I'm such a baby. I couldn't take the kids at the water park. I want Eleanor to be one of those kids so badly. I want her to be able to strip down to her knickers and run like a banshee through a sprinkler, but she's going to have a tube coming out of her chest for a long time. She has to Saran wrap it just to go in the tub. I'm told by the staff it won't be forever and all the kids make do, but it still makes me sad. But we had a fabulous moment when a kind woman saw E's feet poking out of the stroller and asked to see her, so Kris pulled the sunshade back, and the woman didn't even flinch. She cooed over her and was totally normal. I'm sure she could feel the relief pouring out of us.
Upon our return to the hospital, we were met by our favourite resident, the lovely Krystal. Krystal and I went to the same high school and played on a few teams together, and she has been looking after us since our first night in hospital. She has been awesome. I can't tell you how great it is to have a familiar face when your world is collapsing. After Eleanor went to bed we retreated onto the deck for some dinner and carrot cake. I feel very lucky to have so many incredible people so near by. How great is it that Krystal happens to be on her oncology rotation? How lucky am I to have Jen and Clare, two of my best girlfriends, working in this hospital and popping in on their coffee breaks? It sucks that we are here. It's awful that Eleanor is sick, but it is a blessing to have such great friends, food and days like today.
Anyway, after lunch we packed the baby up and headed off to the aquarium. We were a bit nervous that she might be too young, but she seemed to enjoy it. We held her up to the tanks and she was mesmerized by the brightly colored fish. She especially loved all the kids running around her. A lot of them stopped to stare at her, which we figured might happen. There is really no way to hide her NG tube, so...yeah. No big deal.
We got back to the hospital at 6pm and baby girl had a hard time going to sleep, so today we made sure we got out early. We drove down to Granville Island and spent a good few hours wandering around the shops and down the seawall. Eleanor slept most of the time, which was fine with us. It was a beautiful day here in Vancouver and it was wonderful to be out enjoying the sunshine. And I only cried twice! I'm such a baby. I couldn't take the kids at the water park. I want Eleanor to be one of those kids so badly. I want her to be able to strip down to her knickers and run like a banshee through a sprinkler, but she's going to have a tube coming out of her chest for a long time. She has to Saran wrap it just to go in the tub. I'm told by the staff it won't be forever and all the kids make do, but it still makes me sad. But we had a fabulous moment when a kind woman saw E's feet poking out of the stroller and asked to see her, so Kris pulled the sunshade back, and the woman didn't even flinch. She cooed over her and was totally normal. I'm sure she could feel the relief pouring out of us.
Upon our return to the hospital, we were met by our favourite resident, the lovely Krystal. Krystal and I went to the same high school and played on a few teams together, and she has been looking after us since our first night in hospital. She has been awesome. I can't tell you how great it is to have a familiar face when your world is collapsing. After Eleanor went to bed we retreated onto the deck for some dinner and carrot cake. I feel very lucky to have so many incredible people so near by. How great is it that Krystal happens to be on her oncology rotation? How lucky am I to have Jen and Clare, two of my best girlfriends, working in this hospital and popping in on their coffee breaks? It sucks that we are here. It's awful that Eleanor is sick, but it is a blessing to have such great friends, food and days like today.
Thursday, 21 July 2011
Little help?
Attention well-wishers! I have tasks for you! Here are a few things Kris and I could really use.
If you find yourself by our little house near the beach:
1) Help Kris with the housework! Eleanor will be going home on passes very soon, and that place needs to be spotless. Even just half an hour to help fold laundry would be extremely helpful.
2) Food! I am very worried about Kris's diet when I am not around. I suspect it is all junk. He really likes beef stew and roast chicken.
Should you find yourself near BC Children's Hospital:
1) Food! Single serving vegetarian dishes. Fresh or frozen, homemade or store-bought, one-time portion or enough for an army, I don't mind! I will eat it all!
2) Babysitting! As you can probably tell, Kris and I are leading two separate lives. We would love an hour or two on our own on a Sunday or Saturday afternoon.
In general:
1) PRAY
2) Give blood! I had no idea how many transfusions were required for patients undergoing chemotherapy treatments. It's in you to give! There are lots of people who need it.
This has been an all-consuming experience for us. We need help and are really terrible at asking for it and sometimes we just don't have the time or energy to make plans. If you are able to provide food, simply drop it off. If we are not around, leave a note and we will make sure to get in touch with you to confirm it found a good home! If you are able to volunteer time, text us that morning and we will let you know if it is a good day.
Even writing this makes me feel like a jerk. I hope it doesn't come across as a demand, like because you are reading this you have to help. That is not the case AT ALL. I just know that there are a few people out there who would like to help but weren't getting enough info from myself or Kris.
Thank you thank you thank you in advance, and thank you for your continued support. Eleanor is feeling the love and thriving!
If you find yourself by our little house near the beach:
1) Help Kris with the housework! Eleanor will be going home on passes very soon, and that place needs to be spotless. Even just half an hour to help fold laundry would be extremely helpful.
2) Food! I am very worried about Kris's diet when I am not around. I suspect it is all junk. He really likes beef stew and roast chicken.
Should you find yourself near BC Children's Hospital:
1) Food! Single serving vegetarian dishes. Fresh or frozen, homemade or store-bought, one-time portion or enough for an army, I don't mind! I will eat it all!
2) Babysitting! As you can probably tell, Kris and I are leading two separate lives. We would love an hour or two on our own on a Sunday or Saturday afternoon.
In general:
1) PRAY
2) Give blood! I had no idea how many transfusions were required for patients undergoing chemotherapy treatments. It's in you to give! There are lots of people who need it.
This has been an all-consuming experience for us. We need help and are really terrible at asking for it and sometimes we just don't have the time or energy to make plans. If you are able to provide food, simply drop it off. If we are not around, leave a note and we will make sure to get in touch with you to confirm it found a good home! If you are able to volunteer time, text us that morning and we will let you know if it is a good day.
Even writing this makes me feel like a jerk. I hope it doesn't come across as a demand, like because you are reading this you have to help. That is not the case AT ALL. I just know that there are a few people out there who would like to help but weren't getting enough info from myself or Kris.
Thank you thank you thank you in advance, and thank you for your continued support. Eleanor is feeling the love and thriving!
Wednesday, 20 July 2011
Flow it, show it, long as you can grow it
I was absentmindedly scraping some cradle cap off Eleanor's head tonight, and when I paused to admire the shiny pink skin I had unearthed, I realized I had removed all the hair in the area as well. I am trying not to feel bad about this. She already has a large bald spot on the back of her head that has grown from a quarter sized spot to a $20 bill. Her hair is everywhere. It's on her sheets, on her gown, in my mouth and in my hands. She's on her way to being a card-carrying cancer baby. But it seems that all the hair that grew because of the excessive cortisol and testosterone is less inclined to fall out in my hands. She is going to be the only cancer baby with big sideburns and a hairy back. I kind of love the hair on her back. It's so downy soft, and coupled with her squishy fat skin, makes for all kinds of wonderful cuddles.
It crossed my mind that I should just go to town on her scalp and get rid of all the cradle cap, and if all her hair falls out, so be it. But I can't do it. Even though it's just baby hair, and tons of babies don't have hair or it grows in like Friar Tuck, I am still sad to see it go. She was born with a full head of dark hair, just like her mummy. I fully expected her to be bald, but lo and behold, out she came, a raven-haired angel. It was like a covenant between us; she was really mine. Ah, evolution! "She looks like me, so I am less inclined to eat her." As she has gotten older, it has been growing in lighter and now shines gold in the sunlight. It's really lovely hair, but it is a bit silly to lament over it. I was just taken unawares that it would go so soon.
It crossed my mind that I should just go to town on her scalp and get rid of all the cradle cap, and if all her hair falls out, so be it. But I can't do it. Even though it's just baby hair, and tons of babies don't have hair or it grows in like Friar Tuck, I am still sad to see it go. She was born with a full head of dark hair, just like her mummy. I fully expected her to be bald, but lo and behold, out she came, a raven-haired angel. It was like a covenant between us; she was really mine. Ah, evolution! "She looks like me, so I am less inclined to eat her." As she has gotten older, it has been growing in lighter and now shines gold in the sunlight. It's really lovely hair, but it is a bit silly to lament over it. I was just taken unawares that it would go so soon.
Tuesday, 19 July 2011
Sweet Freedom
I got out for a run last night. The Red Cross have been amazing and are sending volunteers to watch Smelly for a few hours in the evening. My plan was that they would sit here while she sleeps but she really hates sleep at the moment, and would much rather show off her new found skill: screeching. I felt bad for the volunteer, but I am relishing my sore legs today. It felt so good to hit the pavement, even if it was cripplingly slow. It didn't hurt that it was the first sunny day in weeks, either. I am holding a lot of tension in my shoulders and my jaw and running really helps to get some blood flow going and loosen those areas. I feel like a new person today!
Eleanor continues to improve. She has been happy and cheerful for the past couple of days, which is lovely, but very tiring. She doesn't sleep much when she is feeling good, as it's really hard to create a quiet environment when you have people coming in and out all day. Sad to say, but in some ways it's easier when she is on morphine! She is guaranteed to nap like a pro when she is on that stuff!
She had her GFR (kidney function test) this morning, and depending on the results, she will be starting chemo very soon. I had a long talk with her doctor yesterday about what the next few months will look like, and he seems to think we will spend less time in hospital than originally estimated. That should be good news, but the more time we spend out of hospital, the more finacial burden is placed on us. All her meds are covered while we are here, and I have been warned that they are not cheap. We have been blessed with a few grants and perks through our social worker, but we will need a lot of help. I'll have to put my fundraising skills to good use! The fellow is coming in later today to discuss what this all will look like. They did warn us that everything is subject to change, but this was definitely unexpected! Free from hospital walls! Free! That's a four letter word!
Eleanor continues to improve. She has been happy and cheerful for the past couple of days, which is lovely, but very tiring. She doesn't sleep much when she is feeling good, as it's really hard to create a quiet environment when you have people coming in and out all day. Sad to say, but in some ways it's easier when she is on morphine! She is guaranteed to nap like a pro when she is on that stuff!
She had her GFR (kidney function test) this morning, and depending on the results, she will be starting chemo very soon. I had a long talk with her doctor yesterday about what the next few months will look like, and he seems to think we will spend less time in hospital than originally estimated. That should be good news, but the more time we spend out of hospital, the more finacial burden is placed on us. All her meds are covered while we are here, and I have been warned that they are not cheap. We have been blessed with a few grants and perks through our social worker, but we will need a lot of help. I'll have to put my fundraising skills to good use! The fellow is coming in later today to discuss what this all will look like. They did warn us that everything is subject to change, but this was definitely unexpected! Free from hospital walls! Free! That's a four letter word!
Saturday, 16 July 2011
Man cannot live on Johnson's Baby Shampoo alone
So I got my hair did.
I was looking forward to this all week. Finally some ME time! I thought I could get away from the hospital and be free and mingle with the outside world. And for the most part that is what happened today, but I didn't realize how uncomfortable it would make me. I struggled to make conversation with the stylist and kept bringing everything back to Eleanor. I should have realized it was awkward when she offered to get me a magazine midway through. When it was all done, I sat at the bustop and patiently waited for my bus, the number 5. A stretch limo pulled up and four dashing groomsmen climbed out, followed by a gaggle of bridesmaids and a blushing bride. They were taking photos in the no-mans-land between Granville Island and Kits. They looked so happy. Even though we had the most incredible wedding, I was jealous of this couple. They have everything ahead of them, a clean slate. How did I get here? How do I get out of here? Two number 50s have passed me but my bus hasn't come by and I have been waiting for half an hour. I do a quick search and find that I am not waiting for the number 05, but the 050. How did I misread that? And why didn't those other buses stop? I'm sitting in the bus stop! It all draws me back to my feeling that I don't belong in the outside world. The whole outing left me with a bad taste in my mouth. I'm not anxious about leaving the baby, I just don't like being anywhere but the hospital. I don't want to talk to anyone outside the hospital. You have friends and romances and nights at the pub. You have work and family and extracurricular activities. I have Eleanor and Kris. There's nothing out there for me. Maybe I haven't reached that point where I am completely stir crazy. Who knows?
If ever there was a day to escape, today couldn't have been easier. Eleanor is doing great. We have nothing major to worry about, except high blood pressure, and she's on medication for that. But no infections, no viruses, no fever. Her counts are steadily returning to normal, and it looks as though she will be able to go ahead with more chemo this week, as per her protocol. She's back to being a happy baby and it's really cool to see her doing normal baby things. Speaking of which, she cut her first tooth! It's been a long time coming, and it made a few fake appearances in the past, but it is here for real this time! I'd say "she's getting so big!" but in her case, she is actually getting smaller(losing the Cushinoid weight=good thing) , so I'll say "she's growing up so fast" instead. Little turd. I can't upload photos here as I'm on my phone, but I have some truly great photos and videos of her experience that are heart-warming. Except for the nasogastric tube in her nose, she looks and acts like a typical 7 month old baby. And she smells like one, too. Maybe I can go a little longer with just baby shampoo...
I was looking forward to this all week. Finally some ME time! I thought I could get away from the hospital and be free and mingle with the outside world. And for the most part that is what happened today, but I didn't realize how uncomfortable it would make me. I struggled to make conversation with the stylist and kept bringing everything back to Eleanor. I should have realized it was awkward when she offered to get me a magazine midway through. When it was all done, I sat at the bustop and patiently waited for my bus, the number 5. A stretch limo pulled up and four dashing groomsmen climbed out, followed by a gaggle of bridesmaids and a blushing bride. They were taking photos in the no-mans-land between Granville Island and Kits. They looked so happy. Even though we had the most incredible wedding, I was jealous of this couple. They have everything ahead of them, a clean slate. How did I get here? How do I get out of here? Two number 50s have passed me but my bus hasn't come by and I have been waiting for half an hour. I do a quick search and find that I am not waiting for the number 05, but the 050. How did I misread that? And why didn't those other buses stop? I'm sitting in the bus stop! It all draws me back to my feeling that I don't belong in the outside world. The whole outing left me with a bad taste in my mouth. I'm not anxious about leaving the baby, I just don't like being anywhere but the hospital. I don't want to talk to anyone outside the hospital. You have friends and romances and nights at the pub. You have work and family and extracurricular activities. I have Eleanor and Kris. There's nothing out there for me. Maybe I haven't reached that point where I am completely stir crazy. Who knows?
If ever there was a day to escape, today couldn't have been easier. Eleanor is doing great. We have nothing major to worry about, except high blood pressure, and she's on medication for that. But no infections, no viruses, no fever. Her counts are steadily returning to normal, and it looks as though she will be able to go ahead with more chemo this week, as per her protocol. She's back to being a happy baby and it's really cool to see her doing normal baby things. Speaking of which, she cut her first tooth! It's been a long time coming, and it made a few fake appearances in the past, but it is here for real this time! I'd say "she's getting so big!" but in her case, she is actually getting smaller(losing the Cushinoid weight=good thing) , so I'll say "she's growing up so fast" instead. Little turd. I can't upload photos here as I'm on my phone, but I have some truly great photos and videos of her experience that are heart-warming. Except for the nasogastric tube in her nose, she looks and acts like a typical 7 month old baby. And she smells like one, too. Maybe I can go a little longer with just baby shampoo...
Thursday, 14 July 2011
Sleepy Time Bear
Teary, red eyes greet me as I enter the room. "Mummy, I'm tired." It's okay, baby girl. I scoop her up in arms and bring her in close. Sweet Johnson's baby shampoo scented hair. Plump baby arms with soft smooth skin. Perfect little hands cling to my shirt. I dry her tear-streaked cheek with my own cheek. I feel her yield and settle her weight into my arms. Has she always been this darling? I hum a little tune and her sobs subside. I lay her down in her crib and the fussing begins again immediately. Twinkle, twinkle little star Like a newborn babe, I pull a blanket tightly around her in a swaddle. Up above the world so high She instantly snuggles down and allows her eyelids to close. I stroke her soft hair and pop her pacifier into her mouth. Like a diamond in the sky Pressing my lips to her forehead, I inhale the sterilized scent of the hospital. It is fast becoming a part of her. How I wonder what you are Her eyes flutter open as I step away. "It's sleepy time, bear." And she is sleepy. A few more grunts and protests and she agrees.
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