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...
Wednesday, 13 July 2011
Tuesday, 12 July 2011
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.
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.
Sunday, 10 July 2011
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!
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!
Friday, 8 July 2011
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.
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.
Tuesday, 5 July 2011
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?
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?
Sunday, 3 July 2011
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.
Friday, 1 July 2011
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.
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.
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