2B or not 2B

So we moved. Again. We are back on the oncology unit but in 2B instead of 3B. 2B has bigger rooms and is generally used for teenagers or kids that don't require tons of monitoring (ie: not that sick). Eleanor does not fit either of these categories and we feel a bit weird here. Like all these moves, it won't be for long, so we won't get too comfortable, which means we stay uncomfortable. Great. Feeling a bit despondent, angry and tired as a result. It is unfortunate because I have had a whole lot of love poured on me this week so I should be feeling great. Maybe if the kid with the guitar next door would stop playing emo-pop-punk music I'd feel a bit better.

Eleanor is coping with this much better than I am. She's sailing through this round of chemo with very little trouble. She is throwing up a bit, but that's about it. The few times she has done it, there has always been a plausible reason. Last night, for example, she promptly threw up after tasting her first Gerber baby food. It claimed to be chicken, and it had the most repulsive smell. What were they thinking? Do kids actually eat that? I would like to feed her single protiens for her iron, but it's really tough in hospital. I have given her rice cereal and lots of different kinds of fruit but that's about it. Next time we get out on pass I will concoct something.

Oh, and another reason Eleanor is doing so well might have something to do with her new boyfriend. His name is Spencer and he's a whole year older, but she adores him. He was kind enough to lend E some pjs after she barfed all over her last pair. Super cute. She could be screaming her head off but as soon as Spencer shows up, she gets very quiet and watchful. Her big eyes watch his every move. I think it's love! He's down on 2B as well so that's making it a bit more bearable.

Not much else to report - I got most of her barf on me so I should probably change my clothes. I wonder if Spencer has an extra pair of pjs for me as well...

Oh, come on!

One thing I haven't mentioned here are all the "uh-ohs", the little mishaps that have occurred along the way, the things that make you smack your forehead and exclaim "really? Really?!?". There have been quite a few. Before we left ICU, our nurse wanted to show me how to change the dressing on Eleanor's central line. A central line is a tube that runs directly into her chest and can be used to draw blood or administer drugs or fluid. It is basically a permanent IV. Anyways, this nurse is changing the dressing and it's not coming off very well, so she attempts to cut it off and snips the line clean in half. It was an accident and it was fixable without surgery (thank God), but it seemed to be a cruel joke at our expense.

Then there is her nasogastric (or NG) tube. She pulls it out constantly, and it seems to cause us nothing but problems. Like during her neutropenic phase in her last round of chemo. She was sick as a dog, and the pH from her tube was coming back funny. They sent her down to xray and lo and behold, the end of the tube isn't in her stomach at all. It looped around her stomach and was six centimeters into her intestine! Anti-nauseates can't settle you stomach if they can't get into your stomach! And just over the weekend, the stupid tube wouldn't let anything through it. They thought it was clogged and apparently the best way to unclog it is with Coca Cola. So the nurses are drawing this beverage into a syringe when they pause and ask me, "you're okay with this, right?" Sure, I say, my infant daughter can have soda pop. Why not?! Turns out it wasn't clogged, it had a kink in it. They found this out when they removed it and replaced it for (shudder) the fourth time this week.

But tonight may take the cake in crazy, crappy things. A pipe burst above room 5 (also known as the closet we once called home) and the ENTIRE WARD HAS BEEN EVACUATED. They couldn't guarantee the air quality while they are repairing it so we are all in 3M. The trouble with 3M is that it is for cardiac and respiratory illness, so everyone is put on isolation to prevent kids with no immune system catching a serious reparatory infection.

I love this hospital. I love the staff. They saved Eleanor's life and are giving her a fighting chance, but this gets a big "really? Really?!!"

Please excuse the poor grammar. I'm a sleepy bear tonight!

Normal Baby Stuff

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!

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.

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!

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.

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!

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...

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.

Rollin'

We had some truly superlative tummy time this afternoon. We were working through some of her physio exercises, but baby girl had other plans. She rolled over! She hasn't done that in two months! Turns out her jerky limb movements aren't some morphine-induced spasm, it's just her being a baby. Great to see that she is feeling better.

I, on the other hand, feel like I have been run over by bus. I am not getting outside enough, and sleep is elusive at the moment. It seems like our nurse came in every hour last night, and Eleanor is so sensitive to him. If he so much as touches her feeding tube or her IV pole she wakes up, which wakes me up. So frustrating. It doesn't help that I stay up far too late writing blog posts or watching episode after episode of 30 Rock. That being said, I should put my phone down now and go to sleep...

Room 10

We've moved again! I suspect we will move quite a bit during our stay here. Apparently we need to be closer to the nurses station so they can hear if any of her bells and whistles go off. They moved us to room 6, which is slightly larger than the broom closet/cell that we were in originally. While I was moving the crib and the cot around with the nurse, I inadvertently burst into tears. I tried to hold them back, but I couldn't help it. I couldn't put a positive spin on this tiny room with no outlets and no space for a chair to nurse my baby. As luck would have it, our social worker walked in to discuss an unrelated matter and saw my distress. She spoke to the charge nurse and had us move to a bigger room with its own bathroom. I love Pam. She gets RESULTS! So now we are settled in room 10. It's not as big as our last room, but it does have a view of the mountains and space for my very own breast pump!

Eleanor did great with all the moving around, probably because she is completely stoned on opiates. Poor little tyke was so uncomfortable yesterday that they put her on continuous morphine. It makes her sleep more than normal and she gets so cracked out when she is awake. She jerks her limbs around and has this wild look in her eyes. It's kind of weird, but it's better than seeing her in pain. She had both a platelet and a hemoglobin transfusion last night, and that has to be making her feel better. Blood products are the best. I wish I could get some - probably make me feel awesome too...

Her GFR (kidney function test) and heart echo are being scheduled for next week, and I am excited to find out how both of these organs are doing. Our oncologist thinks we will delay the next chemo treatment for another week after that so that her white blood cells can recover a little more, but we won't have to go down to ICU to administer it. She's too strong for ICU! It makes me a little sad because I am completely in love with the staff down there. It's not surprising; these people saved Eleanor's life. Sam compressed her chest when she had a heart attack, Mary pushed her through to surgery and Todd, well, Todd was the beast who carried our burden. He was a rock the whole time we were down there. I miss them.

Yep, the hospital is a weird, lonely place where unlikely friendships occur during times of great stress. I feel extremely lucky to have had such great people brush through my life, and they have been instrumental in helping us get through this. Pretty amazing folk, indeed.

Genius!

Eleanor is 7 months old today! It's crazy to think that 7 months ago today I was just down the hall, huffing and puffing and swearing at all the nurses. Don't get me wrong; it was the best birthday I have ever had and my angel baby was the greatest gift I have ever received, but that labour stuff hurts! Today also marks 1 month in hospital. I haven't been home in a full calendar month, and I probably won't for many more. Aside from my dog, there is nothing there for me. My home is with my baby, and for now we live in the hospital.

She's had a rough couple of days. The chemo has hit her really hard and she is so nauseous. We seem to have figured out the best way to settle her tummy, and it involves 4 different anti-nausea drugs, 1 stool softener and an occasional bolster of morphine. I feel like it wouldn't be that bad if it wasn't for the damn Mitotane. She takes it 4 times a day and it makes her so sick. It's basically rat poison/insect repellent that blocks steroids and is only used for adrenal cancer, and since children and infants never get adrenal cancer, none of the nurses here have ever administered it or understand the side effects. So anything that is hard to explain or is out of the ordinary is blamed on the Mitotane. Her counts have also bottomed out. They should stay low for a few days and then start picking up again. The doctors are really happy with how she is doing, so we are too. It's hard when she is so sick, but knowing that the chemo is attacking the cancer as aggressively as her fast-growing cells brings a small amount of comfort.

In an effort to encourage Eleanor's development, we have been getting her up in a tumble-form seat. It's quite tiring for her at the moment, so we sing songs and play with toys to keep her amused. Then Kris thought to bring over her Baby Einstein DVDs. We have a stack of them at home, courtesy of Grandma Dana, but I must admit I was skeptical. Despite the fact that they are insanely popular and have made Disney a TON of money, I wasn't sure how I felt about putting a baby in front of the tv. Well, after spending a month in hospital that's all out the window! These things are CRAZY! It's just a video of different toys set to classical music, but it's like crack-cocaine to the baby. She is 100% transfixed on the screen the whole time! She loves absolutely loves them, and it's great to have lots of quiet activities we can do in her room. Well done, Disney! You win this round!

Long nights

I do not like my daughter vomiting. I do not like staying up all night because I hate the feeling of waking to hear her vomit. I do not like that I have trained myself to delay responding to her cries, and she is crying because she needs help. I do not like blood in her vomit. I do not like blood in her stool. I do not like middle-of-the-night platelet transfusions for said blood. I do not like my heart pounding in my chest, pretending to sleep because I am so scared as they set up her transfusion with flashlights. I do not like that she refuses to eat. I do not like that her feeding tube was not in her stomach where it should have been, but instead is being snaked through her intestine towards her colon. I do not like that this could have been the reason she was so ill. I do not like that they moved it, and she is still vomiting. I do not like myself very much right now because I have been adequately prepared for this, and I am still frightened.

I do not like cancer. I do not like chemotherapy. I do not like this.

My daughter has adult cancer and I am acting like a baby. Nobody said this was easy. Everyone said it would be this hard.

But I love my husband for taking her around the hospital in the pram. I love that he filled the pram with her toys and protective sheets in case she gets sick again. I love him for giving me a much needed break. I love him for being such a great dad.

Breathe.

Everything sunny all the time always

Mmmmm. The sunshine warms the back of my neck as I sit on the rooftop patio outside the ward. Children laughing and playing warms my heart. The sky is so clear, it looks like I could reach out and touch the North Shore mountains. It's like today was made for me. I can't stop smiling.

I have been overwhelmed by the support that continues to pour in from around the world. Eleanor is a popular little girl! She must sense it; she certainly soaks up the attention from the nurses and doctors and hospital staff. Her big, bright eyes watch each person who enters the room, and she coolly examines them, and deems them worthy or unworthy of a smile. Men seem to get the most smiles, much to our dismay. I hope this isn't a trend that will continue into her adolescent years!

But seriously, the support is amazing. Whether it's a card or a gift or a thought and a prayer, they are all very much appreciated. I wish I had the time and energy to thank everyone individually, and I will do my very best. My hope is that Eleanor can thank everyone herself, so I won't have to!

On days like today, however, I don't need anything. My baby girl had three solid naps, lots of wet diapers and some quality playtime. I get to sit out in the sun! Who could ask for anything more?

Sicky

I was just re-reading my previous post, and I realized there is a mistake. I said that Eleanor hadn't suffered any side effects from the chemotherapy. What I meant to say was that she didn't have any heart problems or die. NOW we are starting to see the side effects of the treatment. Poor little bear threw up three times today. The first time it happened, I was so freaked out. She made these awful gagging noises which are only made worse by the feeding tube. After the third time they gave her some Gravol and she is sleeping peacefully. She looks so beautiful when she sleeps, even with her mouth hanging open and her sweaty head mashed into the mattress. My little girl.

3B

Eleanor came through her first round of chemo like a champ. Granted, it was a small dose, but she didn't have any major side effects. She is doing so well that they sent us back up to the ward a day early. Great!

She is sleeping peacefully next to me after an exciting day with Auntie Trudi and Daddy. She is also receiving a blood transfusion. She's having a hard time pumping oxygen through her blood because her red blood cells are down, which means her heart rate and her blood pressure are elevated. She also needed oxygen prongs in her nose, which she hates. She claws away at the tubes and rubs her nose constantly when they are in. She's on the second hour of a four hour transfusion, and her heart rate is down. Hopefully the prongs will come out tomorrow.

I'm trying not to be freaked out. I heard the kid in the room next to us crying "it hurts! It hurts!". I happened to be sitting with a resident in hallway at the time and she was quick to inform me that it was his stomach. All I can think about is, when is Eleanor going to cry out like that? How am I going to know what hurts? How will I be able to fix it? Nothing really fazed me in ICU because everyone was in here for a different reason. Up here, everyone has cancer. Different types of cancer, but still gut-turning, angry, dangerous cancer. It's scary, and I know it will get easier once we get more settled, it's just a lot to take in today. Kris keeps saying "be strong", which is an expression I hate, but I'm clinging to it right now. I'm tired and frazzled and on my own.

Tomorrow will be better.