On Kris's insistence, I had to be nice to the neighbors this weekend. A new little baby was admitted to the ward, and Kris thought the mum looked shellshocked and I should go to talk to her. Lots of women welcomed me when we first arrived and we decided it is my turn to help out. I drew in a deep breath and rapped on their door. The scene that awaited me was truly breathtaking; a beautiful girl with long golden locks sat cross-legged on the crib, breastfeeding a tiny baby. The setting sun created a halo around them - it was like a living, breathing Madonna and child. So naturally I became tongue-tied and awkward. She was very relaxed and tells me they are (not surprisingly) from Nelson. The baby has a tumor on her kidney and all the scans and such would be performed after the weekend. Total newbies, no idea what is going on or what is going to happen, so I start rambling about my experience and my sick baby. What the hell was I thinking? That poor girl. Their story is already so different from ours as we took two weeks of critical care in ICU to be deemed stable enough to be on the ward. They skipped that step entirely! I finished every sentence with "but everyone's case is different" and hoped that would ease the fear that was slowly creeping on her face. I am not a welcome wagon. I don't think I will be doing that again soon.
Since then I have been hiding in our room, trying to keep this girl from seeing Eleanor in all her distressed glory. She had a really rough weekend. Her mucousitis flared up, which means the lining of her digestive tract has been eroded by the chemo and she has meters and meters of inflamed tissue/sores. I have been sitting by her side, suctioning out gobs of mucous to prevent her from aspirating. She is on a morphine drip to control her pain and Benadryl to control the side-effects of the morphine. She has had brief periods of consciousness and she spends them crying or tripping out on her toys. It's pretty horrific, and is the exact opposite of what a newbie should be seeing. Today, however, her neutrophils are up from 0.00 to 0.02 and the secretions are subsequently improving. Just a few more days of misery and she should start feeling better. Maybe then I will try again to be nice.
Monday 29 August 2011
Saturday 27 August 2011
Numbers
Today is all about numbers. Our attending GP was quite chuffed about Eleanor's hormone levels from her last test. She handed me a piece of paper with all the numbers from all the tests since being admitted and while it may just look like a bunch of numbers, it brings me incredible joy. Basically, her levels are lower than ever (yay!) and therefore closer to normal baby hormones. While the levels dropped dramatically since removing the tumor, there is a clear rise between rounds two and three. This is not good, but it shows that the chemo supressed the cancer initially and it pinpoints the moment the chemotherapy stopped working. It also means that the cancer growing in her lungs is still acting like the original tumor, and is secreting hormones like her adrenal gland. That kind of blows my mind. Is it weird that I find the nature of my daughter's cancer fascinating?
Another number we are focused on today is her temperature. After 36 hours of discomfort, she spiked a fever. It's the first time she has ever had one, cancer or no cancer. They drew some blood for cultures and put her on antibiotics right away. She also got some Tylenol paired with her morphine, and I am told that this is a very effective pain-reliever. Now we just wait and see if anything else develops. Poor little bear. She is definitely struggling, but according to her previous numbers, her white blood cells should start coming up in 3 or 4 days and she will start feeling better. Fingers crossed that she doesn't have an infection!
Another number we are focused on today is her temperature. After 36 hours of discomfort, she spiked a fever. It's the first time she has ever had one, cancer or no cancer. They drew some blood for cultures and put her on antibiotics right away. She also got some Tylenol paired with her morphine, and I am told that this is a very effective pain-reliever. Now we just wait and see if anything else develops. Poor little bear. She is definitely struggling, but according to her previous numbers, her white blood cells should start coming up in 3 or 4 days and she will start feeling better. Fingers crossed that she doesn't have an infection!
Friday 26 August 2011
Shameless Idealist
Last night was eventful. Every hour, on the hour, Eleanor's poor little body would wake her up and eject everything from her system. She got a dose of Gravol at 3 and we stopped the continuous feeds. That gave her about two hours of peace. I begged the nurses at shift change to give her some relief, but they had to wait for the doctors to show up before giving her morphine. She's been quite a bit better since then, but she still can't tolerate any oral medication. I hate having to resort to narcotics to console my baby, however I am glad she is more comfortable. She is now having a snooze next to me and it is nice to hear little snore.
Before all this drama last night, I read a case study of children under the age of 20 who had ACTs (adrenal cortical tumors). It's pretty crazy stuff, but it was interesting to learn that of this super rare condition (affects 0.3 in 1,000,000 children of non-Brazilian decent), Eleanor is actually the norm. It tends to strike female babies under the age of 3 and is usually present on the left side. I also learned that it is most likely a genetic mutation, but we won't have confirmation on that for a few more weeks. This study looked at the staging and prognosis of children with this condition and was essentially a death certificate for my child. Her tumor was too big, her Cushing's too pronounced, her metastasizes too rampant for her to survive.
So I am choosing to be a shameless idealist.
Shameless idealism is one of our core values at Free The Children and was emblazoned on our staff shirts at We Day. We are an army of warriors, out to better the world. We inspire young people to join our cause and change their way of thinking. We challenge them to be the change they want to see in the world. The Merriam-Webster dictionary describes idealism as a theory that ultimate reality lies in a realm transcending phenomena . I want that now. I want to put aside all negative thoughts and throw myself behind the cause of Eleanor's survival. So what if her odds are around 15%? Why can't she be one of those 15% that pull through? Someone has to survive this; why not her? She has done so well so far, I believe she can do it.
I'm going to hold out hope that my little girl will live.
Before all this drama last night, I read a case study of children under the age of 20 who had ACTs (adrenal cortical tumors). It's pretty crazy stuff, but it was interesting to learn that of this super rare condition (affects 0.3 in 1,000,000 children of non-Brazilian decent), Eleanor is actually the norm. It tends to strike female babies under the age of 3 and is usually present on the left side. I also learned that it is most likely a genetic mutation, but we won't have confirmation on that for a few more weeks. This study looked at the staging and prognosis of children with this condition and was essentially a death certificate for my child. Her tumor was too big, her Cushing's too pronounced, her metastasizes too rampant for her to survive.
So I am choosing to be a shameless idealist.
Shameless idealism is one of our core values at Free The Children and was emblazoned on our staff shirts at We Day. We are an army of warriors, out to better the world. We inspire young people to join our cause and change their way of thinking. We challenge them to be the change they want to see in the world. The Merriam-Webster dictionary describes idealism as a theory that ultimate reality lies in a realm transcending phenomena . I want that now. I want to put aside all negative thoughts and throw myself behind the cause of Eleanor's survival. So what if her odds are around 15%? Why can't she be one of those 15% that pull through? Someone has to survive this; why not her? She has done so well so far, I believe she can do it.
I'm going to hold out hope that my little girl will live.
Thursday 25 August 2011
It's been a very busy week for us. I have been very taxed emotionally and have been processing lots of clutter in my head and heart. I'm very lucky to have had my mum in town and the Red Cross volunteers helping out while I purge myself of icky feelings. Purging has come in many different forms; I ate super spicy food; I cried at a movie; I bitched to my friends and I went for a swim at Kits pool. Swimming is the best, but that pool takes it to a whole other level. For those of you who have never had the joy of swimming in this pool, allow me to indulge you. It is a salt water pool over 125 meters long and is perched above the ocean. It has a clear view over to the North Shore Mountains and it is heavenly. I felt very Mad Men-esque as I exhaled all the oxygen out of my lungs and sunk to the bottom of the pool. I allowed the water to engulf me, cleanse me and rejuvenate me. I felt so much better afterwards.
Baby girl's white blood cell counts dropped today. Part of the reason of my funk earlier in the week was because her counts were so high, just like last time, and the last round didn't touch the cancer. I drew the conclusion in my mind that healthy baby = healthy cancer. I have since been told that this is not how it works, and her high blood counts mean her bone marrow has not been exhausted by the chemo. I asked if we could up the chemo and the doctor was vague, but she did say we will be able to go home between rounds again! And this time it might be for a whole week! I would love to get home and get my life sorted. It's very difficult to keep on top of everything from a hospital room. I wonder if I could hire a personal assistant and pay them with Monopoly money...
Anyway, Eleanor is doing great despite her immune system being compromised. She's happy and eating and working hard at sitting, but is very much interested in her feet and face-plants a lot. She is very weak. It will be a long, long time before she crawls or cruises or locomotes in any real way, but it's just me that gets upset about it. She doesn't mind at all! Bless.
Baby girl's white blood cell counts dropped today. Part of the reason of my funk earlier in the week was because her counts were so high, just like last time, and the last round didn't touch the cancer. I drew the conclusion in my mind that healthy baby = healthy cancer. I have since been told that this is not how it works, and her high blood counts mean her bone marrow has not been exhausted by the chemo. I asked if we could up the chemo and the doctor was vague, but she did say we will be able to go home between rounds again! And this time it might be for a whole week! I would love to get home and get my life sorted. It's very difficult to keep on top of everything from a hospital room. I wonder if I could hire a personal assistant and pay them with Monopoly money...
Anyway, Eleanor is doing great despite her immune system being compromised. She's happy and eating and working hard at sitting, but is very much interested in her feet and face-plants a lot. She is very weak. It will be a long, long time before she crawls or cruises or locomotes in any real way, but it's just me that gets upset about it. She doesn't mind at all! Bless.
Sunday 21 August 2011
Round 3 complete
The wireless network is down this weekend, so I am writing this on a computer. How novel! It means that I am away from my baby, which makes me increasingly nervous. I am going to make this short.
Eleanor has been spectacular in her response to the chemo or, as her godmother put it, her big girl juice. All the doctors and nurses are nodding their heads in approval, which is nice to see. Her nausea is under control and she seems in good spirits. She's still eating and breastfeeding, but not huge amounts, so she will be supplemented with breast milk feeds through her NG tube. Yup, I'm still a Nazi about breastfeeding! I think the staff are getting sick of me as I am always requesting bottles and caps, labels, pumps, pump kits etc etc. It would be so much easier (in their eyes) to just give her formula. Oh well. I'm pretty easy-going for most things, so if I have to stick my neck out on this one, I will!
I thought I would add a photo (because I can!). Here is one of us before she started her chemo treatments.
Good night!
Eleanor has been spectacular in her response to the chemo or, as her godmother put it, her big girl juice. All the doctors and nurses are nodding their heads in approval, which is nice to see. Her nausea is under control and she seems in good spirits. She's still eating and breastfeeding, but not huge amounts, so she will be supplemented with breast milk feeds through her NG tube. Yup, I'm still a Nazi about breastfeeding! I think the staff are getting sick of me as I am always requesting bottles and caps, labels, pumps, pump kits etc etc. It would be so much easier (in their eyes) to just give her formula. Oh well. I'm pretty easy-going for most things, so if I have to stick my neck out on this one, I will!
I thought I would add a photo (because I can!). Here is one of us before she started her chemo treatments.
Friday 19 August 2011
Braveheart
Well, she survived the doxorubicin. She's so tough. There were some irregularities with her heart which concerned one doctor but not the other, so an ECG was taken. Everything came back normal, well as close to normal as Eleanor is going to get, and she is happily resting.
I had a brownie. It was as delicious and satisfying to my soul as one could hope.
Only one more scary day to go!
I had a brownie. It was as delicious and satisfying to my soul as one could hope.
Only one more scary day to go!
Doxorubicin Day
Doxo is being administered right now. We didn't have to move to the cardiac ward, but she is hooked up to telemetry. It'll take about an hour. Our nurse is waiting in the room with me; the babe is sleeping. She's had a big morning with daddy.
I'm a little stressed, so I am catching up on my celebrity gossip. Can you believe Kim Kardashian wore white to her rehearsal dinner? Will her Vera Wang wedding dress be white as well? Oh, the suspense is killing me! (Please insert overly dramatic eyeroll here)
Hmmm...maybe I will get a brownie from the fridge...
I'm a little stressed, so I am catching up on my celebrity gossip. Can you believe Kim Kardashian wore white to her rehearsal dinner? Will her Vera Wang wedding dress be white as well? Oh, the suspense is killing me! (Please insert overly dramatic eyeroll here)
Hmmm...maybe I will get a brownie from the fridge...
Wednesday 17 August 2011
Shhhhh...
Baby is sleeping.
I have so many photos of Eleanor sleeping. There is something so adorable about babies when they sleep. I tend to keep her swaddled so she won't tug on her lines or her NG tube, and she looks so cute with her big, fat head poking out of her sausage-bundle body. Since being in hospital, I have learned that there are many other ways of putting a baby to sleep that don't involve falling asleep on the boob or screaming for an hour. It would appear that I have been doing it wrong this whole time. Amazing stuff.
She has been pretty tuckered out today and napping quite a bit. She started cisplatin yesterday afternoon and etoposide last night. The etoposide was annoying because they have to check her blood pressure every 15 minutes and it is notoriously difficult to get a proper reading on a baby, especially my little fatty. She did not appreciate being unswaddled and constant "arm hugs" from 10pm til 11pm. She is tolerating the cisplatin fairly well. They pump her full of fluid to help prevent her remaining kidney from becoming toxic, so she has gained a kilo overnight and is peeing constantly. Cisplatin is extremely nauseating. She has thrown up quite a bit today, but only when the drug is being administered; she's pretty good otherwise. Tomorrow is just etoposide and doxorubicin on Friday and Saturday. Still no word if we are moving to 3M for that drug, so I haven't unpacked us. I quite like our room; it's nice and big, but our window looks on to the tv area in the playroom. Oh well. It could be much worse! At least we aren't in the broom closet again!
All in all, we are feeling okay. I think our little break at home did us a world of good, and we are ready to take these pesky dragons on again. As the doctor pointed out yesterday, two rounds is still early in the game, and we have an opportunity to turn this around. Onwards and upwards, little bear!
I have so many photos of Eleanor sleeping. There is something so adorable about babies when they sleep. I tend to keep her swaddled so she won't tug on her lines or her NG tube, and she looks so cute with her big, fat head poking out of her sausage-bundle body. Since being in hospital, I have learned that there are many other ways of putting a baby to sleep that don't involve falling asleep on the boob or screaming for an hour. It would appear that I have been doing it wrong this whole time. Amazing stuff.
She has been pretty tuckered out today and napping quite a bit. She started cisplatin yesterday afternoon and etoposide last night. The etoposide was annoying because they have to check her blood pressure every 15 minutes and it is notoriously difficult to get a proper reading on a baby, especially my little fatty. She did not appreciate being unswaddled and constant "arm hugs" from 10pm til 11pm. She is tolerating the cisplatin fairly well. They pump her full of fluid to help prevent her remaining kidney from becoming toxic, so she has gained a kilo overnight and is peeing constantly. Cisplatin is extremely nauseating. She has thrown up quite a bit today, but only when the drug is being administered; she's pretty good otherwise. Tomorrow is just etoposide and doxorubicin on Friday and Saturday. Still no word if we are moving to 3M for that drug, so I haven't unpacked us. I quite like our room; it's nice and big, but our window looks on to the tv area in the playroom. Oh well. It could be much worse! At least we aren't in the broom closet again!
All in all, we are feeling okay. I think our little break at home did us a world of good, and we are ready to take these pesky dragons on again. As the doctor pointed out yesterday, two rounds is still early in the game, and we have an opportunity to turn this around. Onwards and upwards, little bear!
Monday 15 August 2011
Mañana
Yesterday was Sunday and I didn't go to church. I never go to church, but it has been weighing on my mind more and more lately. I am not a religious person. A long time ago, I put my two feet on the ground, looked religion square in its stained-glass eyes and said, "no thank you". I didn't buy it. My knowledge was clouded and was mostly based from Jesus Christ Superstar and Godspell. That said, I do have a soft spot in my heart for Anglican hymns. I did quite enjoy singing my lungs out at 8am in school chapel. Nothing like a rousing hymn to get your blood pumping before class. However, my young brain connected the dots between cult and Christianity when I heard on the news about Heaven's Gate. I didn't want to be like those people who "drank the koolaid" so I decided it was not for me, and when you die, you are worm food.
But how do I continue to deny it when I hold a living, breathing miracle in my arms? Eleanor should have died that first week in hospital and she didn't. All the numbers and odds were against her and she is still here.
I hate the expression "born again", and I don't think it applies to how I am feeling. It's more like an awakening, which is much quieter than the act of being born. And (as I stated above) I was never much into this before. It's just a quiet, peaceful discovery that perhaps there is a bigger plan for us, certainly there seems to be one for Eleanor.
I have been following a blog of a mother, not unlike myself, whose daughter has a degenerative brain disease and has lost her sight and her ability to move. She is palliative and is not supposed to live past two years of age. This mother refers to her baby as her teacher, and I think that is such beautiful sentiment. I am not sure if I am there yet. I have a lot of anger in my heart still, but it only lives there because I can't handle how sad this situation makes me. I pray that I can get to that level of understanding. I pray that I can take each day as it comes with joy and be grateful for the time I have with my baby. I say thanks for every moment we have shared together. I'm not sure about any deeper meaning behind our existence but I understand the importance of NOW. The past is gone, the future is uncertain, and today is a gift. That is why it is called "present".
Maybe I don't need religion, I just need more Kung Fu Panda!
I wanted to write this post, sitting at my computer and adding lots of photos, but I am typing this as I always type these: overtired, on my phone, and in bed. I also wanted to write about all the adventures we have had while out of the hospital, but I think I will save those for another day when I am feeling blue. Tomorrow we head back into hospital to start the next phase. Tonight is for regrouping my thoughts and enjoying our last moments of "freedom".
Thanks for today.
But how do I continue to deny it when I hold a living, breathing miracle in my arms? Eleanor should have died that first week in hospital and she didn't. All the numbers and odds were against her and she is still here.
I hate the expression "born again", and I don't think it applies to how I am feeling. It's more like an awakening, which is much quieter than the act of being born. And (as I stated above) I was never much into this before. It's just a quiet, peaceful discovery that perhaps there is a bigger plan for us, certainly there seems to be one for Eleanor.
I have been following a blog of a mother, not unlike myself, whose daughter has a degenerative brain disease and has lost her sight and her ability to move. She is palliative and is not supposed to live past two years of age. This mother refers to her baby as her teacher, and I think that is such beautiful sentiment. I am not sure if I am there yet. I have a lot of anger in my heart still, but it only lives there because I can't handle how sad this situation makes me. I pray that I can get to that level of understanding. I pray that I can take each day as it comes with joy and be grateful for the time I have with my baby. I say thanks for every moment we have shared together. I'm not sure about any deeper meaning behind our existence but I understand the importance of NOW. The past is gone, the future is uncertain, and today is a gift. That is why it is called "present".
Maybe I don't need religion, I just need more Kung Fu Panda!
I wanted to write this post, sitting at my computer and adding lots of photos, but I am typing this as I always type these: overtired, on my phone, and in bed. I also wanted to write about all the adventures we have had while out of the hospital, but I think I will save those for another day when I am feeling blue. Tomorrow we head back into hospital to start the next phase. Tonight is for regrouping my thoughts and enjoying our last moments of "freedom".
Thanks for today.
Friday 12 August 2011
Look at all my trials and tribulations
Sitting on my sofa, watching Jesus Christ Superstar, my wolf dog sprawled at my feet, my belly full of spicy samosas, my baby sleeping in her crib.
Don't disturb me now I can see the answers
Till this evening is this morning life is fine
Heaven. Atia was so calm when I saw her. I didn't fuss her, but it was like lovers connecting in slow motion. Long looks from across the room; we approached each other with trepidation. Do you remember me, my old friend? I missed her so much. I can't wait to go for a long walk with my family tomorrow, maybe get a cornmeal muffin.
Sleeping tonight may be challenge without my Smelly in the crib next to me. I've always been sensitive to her over the monitor, but I am not used to all this space between us! Kris has offered to do the overnight meds so I will be able to rest.
I'm going to take advantage of that. I just want to see the Superstar number... Oh, how great is it to be home!!!
Don't disturb me now I can see the answers
Till this evening is this morning life is fine
Heaven. Atia was so calm when I saw her. I didn't fuss her, but it was like lovers connecting in slow motion. Long looks from across the room; we approached each other with trepidation. Do you remember me, my old friend? I missed her so much. I can't wait to go for a long walk with my family tomorrow, maybe get a cornmeal muffin.
Sleeping tonight may be challenge without my Smelly in the crib next to me. I've always been sensitive to her over the monitor, but I am not used to all this space between us! Kris has offered to do the overnight meds so I will be able to rest.
I'm going to take advantage of that. I just want to see the Superstar number... Oh, how great is it to be home!!!
Thursday 11 August 2011
Mixed blessings
We have a lot to be thankful for today. Although the news of the growing nodes in her lungs is devastating, we also found out that her kidney function is thisclose to normal and her heart is much, much improved. The chemo missed the mark, but if we had hit harder the first two rounds, those two organs wouldn't be where they are today. Now we are able to hit her with the proper dose (she was only on a half dose before).
Her chances of survival are much slimmer now. This is a reality we are facing, but we are solidering on for two more rounds of rock'em sock'em chemo and then taking stock after the next scans. We have the gift of today and we have the gift of tomorrow. And that's pretty much where we are at.
She sat up unassisted today.
God, I love her so much.
Her chances of survival are much slimmer now. This is a reality we are facing, but we are solidering on for two more rounds of rock'em sock'em chemo and then taking stock after the next scans. We have the gift of today and we have the gift of tomorrow. And that's pretty much where we are at.
She sat up unassisted today.
God, I love her so much.
Wednesday 10 August 2011
The Hungarian Horntail Dragon
The chemo is not working. There are more nodes in her lungs. Her case is being brought to tumor board tomorrow and we will have another family meeting afterwards. Her kidney and heart are still a major concern.
Our hearts are breaking. Her angel wings keep getting bigger and are threatening to fly her away.
Please keep her in your thoughts and prayers.
Our hearts are breaking. Her angel wings keep getting bigger and are threatening to fly her away.
Please keep her in your thoughts and prayers.
Wednesday.
Wednesday is here and so are we.
After getting very pumped up on Monday about our impending dishcharge, our plans have come to a complete halt. I chased down doctors and nurses yesterday to find out the results of all her scans and when we could leave, and no one had a clear answer for me. They had to talk to Dr. Schultz. Dr. Schultz had to talk to radiology. Her scans can't be interpreted easily. Okay, but why does that change us going home? It's her counts that count (Ha. Ha. Ha.) and those are fine. The only reason I can think of is that her lungs are much worse than originally speculated, and Dr. Schultz wants to have another "family meeting" to discuss her prognosis. Or maybe it's not cancer in her lungs at all, and they need another specialist working on her case. We already have oncologists, cardiologists, endocrinologists, nephrologists and radiologists so why not throw in a pulmonolgist as well? That's a thing, right?
I'm really volatile today. I can't express how angry I feel. It's not warranted for the situation, I know that, but it's there nonetheless. It's coming from a place of deep sadness and fear. But please don't try to make it better. If you see me coming, look away. Do not engage me. Do not allow me to indulge into this pit of angry despair. I will be better by Thursday.
After getting very pumped up on Monday about our impending dishcharge, our plans have come to a complete halt. I chased down doctors and nurses yesterday to find out the results of all her scans and when we could leave, and no one had a clear answer for me. They had to talk to Dr. Schultz. Dr. Schultz had to talk to radiology. Her scans can't be interpreted easily. Okay, but why does that change us going home? It's her counts that count (Ha. Ha. Ha.) and those are fine. The only reason I can think of is that her lungs are much worse than originally speculated, and Dr. Schultz wants to have another "family meeting" to discuss her prognosis. Or maybe it's not cancer in her lungs at all, and they need another specialist working on her case. We already have oncologists, cardiologists, endocrinologists, nephrologists and radiologists so why not throw in a pulmonolgist as well? That's a thing, right?
I'm really volatile today. I can't express how angry I feel. It's not warranted for the situation, I know that, but it's there nonetheless. It's coming from a place of deep sadness and fear. But please don't try to make it better. If you see me coming, look away. Do not engage me. Do not allow me to indulge into this pit of angry despair. I will be better by Thursday.
Monday 8 August 2011
Wednesday?
Wednesday?!?! We could be going home as soon as Wednesday!?!
Unreal!
Eleanor is kicking ass and taking names. Her counts skyrocketed today which means they went as low as they were going to(which wasn't very low), and are on their way back up. She did really well during her tests today, too. She had a chest x-ray and then she was sedated for a CT scan and an MRI. When she was coming out of sedation, she went for an echo of her heart. Whew. I'm exhausted just writing that! She still has her GFR tomorrow morning and a date with the audiologist (date and time TBA). Nobody has talked to me about the results of any of these tests, and I am keeping my fingers and toes crossed that they are good.
Oh, and I should mention that when she came to, she also had a photo shoot. And she loved every second of it. That girl of mine...
Unreal!
Eleanor is kicking ass and taking names. Her counts skyrocketed today which means they went as low as they were going to(which wasn't very low), and are on their way back up. She did really well during her tests today, too. She had a chest x-ray and then she was sedated for a CT scan and an MRI. When she was coming out of sedation, she went for an echo of her heart. Whew. I'm exhausted just writing that! She still has her GFR tomorrow morning and a date with the audiologist (date and time TBA). Nobody has talked to me about the results of any of these tests, and I am keeping my fingers and toes crossed that they are good.
Oh, and I should mention that when she came to, she also had a photo shoot. And she loved every second of it. That girl of mine...
Saturday 6 August 2011
Honourable Discharge
It's official! We're going home!
We have been given approval to leave the hospital before her next round of chemo. I can't even believe it. We were originally told that we wouldn't be able to leave until after Christmas! We are still waiting for her counts to bottom out, which is taking longer than last time, but it looks like we can leave next weekend.
It's a daunting week to get through. Not only will she be without an immune system, but we have to do a CT scan of her lungs, an MRI of her belly (both scheduled for Monday morning), a GFR and an echo of her heart. Yikes! A lot of information will be gathered from these scans and will give us an idea of how to move forward. This type of cancer is very aggressive and our oncologist is anticipating that it has moved to her lungs. I am cautiously optimistic; she just doesn't seem like a baby with stage 4 cancer. I guess I don't know any babies with advanced cancer, but she doesn't seem that sick. Even the chemo can't take her down! Either way, we will know on Monday, and then home on the weekend!
Keep up the great work, little bear! We're so proud of you!
We have been given approval to leave the hospital before her next round of chemo. I can't even believe it. We were originally told that we wouldn't be able to leave until after Christmas! We are still waiting for her counts to bottom out, which is taking longer than last time, but it looks like we can leave next weekend.
It's a daunting week to get through. Not only will she be without an immune system, but we have to do a CT scan of her lungs, an MRI of her belly (both scheduled for Monday morning), a GFR and an echo of her heart. Yikes! A lot of information will be gathered from these scans and will give us an idea of how to move forward. This type of cancer is very aggressive and our oncologist is anticipating that it has moved to her lungs. I am cautiously optimistic; she just doesn't seem like a baby with stage 4 cancer. I guess I don't know any babies with advanced cancer, but she doesn't seem that sick. Even the chemo can't take her down! Either way, we will know on Monday, and then home on the weekend!
Keep up the great work, little bear! We're so proud of you!
Thursday 4 August 2011
Blue Skies
Blue skies smiling at me
Nothing but blue skies do I see
Bluebirds singing a song
Nothing but bluebirds all day long
Never saw the sun shining so bright
Never saw things going so right
Noticing the days hurrying by
When you're in love, my how they fly
Blue days, all of them gone
Nothing but blue skies from now on
Summertime has finally arrived on the West Coast. I've been lucky enough to get on pass and enjoy the sunshine. While Irving Berlin may be the soundtrack ringing in my ears, it's not necessarily the song in my heart. Those blue days may be gone, but blue skies aren't as clear as they seem and the haunting melody echoes more true than the charming lyrics. As Eleanor continues to thrive and defy odds, I find myself riddled with sadness and loneliness. I have so many wonderful friends and family members but my heart is not whole without Kristopher. I miss him. I miss my dog. I miss the little home we were building with big dreams.
I moved away from acting because my dreams changed. I turned my back on what I thought was my calling and pursued a different path because I wanted it to lead to babies and puppies and sleepless nights with lots of "duddle" time. I wanted a house with a yard and an army to run with. It was a vague shadow of a dream that was drawn into focus with Kristopher's keen eye. And now it has all been put on hold. More than that, it feels like it has been ripped to shreds. It's so hard. We were getting so close to where we wanted to be and now we cling to what was, what could be and what is left of our broken hearts.
People keep asking, "what do you want? What do you need?" I want my family back under the same roof, in the same city. I need my baby to get better. It's hard to not feel like you have been kicked in the proverbial nuts everyday. Somedays (like today) I need a proverbial jockstrap. This box of Girl Guide cookies will have to suffice. That, and a "good night" phone call to my love and a deep, dark sleep.
Nothing but blue skies do I see
Bluebirds singing a song
Nothing but bluebirds all day long
Never saw the sun shining so bright
Never saw things going so right
Noticing the days hurrying by
When you're in love, my how they fly
Blue days, all of them gone
Nothing but blue skies from now on
Summertime has finally arrived on the West Coast. I've been lucky enough to get on pass and enjoy the sunshine. While Irving Berlin may be the soundtrack ringing in my ears, it's not necessarily the song in my heart. Those blue days may be gone, but blue skies aren't as clear as they seem and the haunting melody echoes more true than the charming lyrics. As Eleanor continues to thrive and defy odds, I find myself riddled with sadness and loneliness. I have so many wonderful friends and family members but my heart is not whole without Kristopher. I miss him. I miss my dog. I miss the little home we were building with big dreams.
I moved away from acting because my dreams changed. I turned my back on what I thought was my calling and pursued a different path because I wanted it to lead to babies and puppies and sleepless nights with lots of "duddle" time. I wanted a house with a yard and an army to run with. It was a vague shadow of a dream that was drawn into focus with Kristopher's keen eye. And now it has all been put on hold. More than that, it feels like it has been ripped to shreds. It's so hard. We were getting so close to where we wanted to be and now we cling to what was, what could be and what is left of our broken hearts.
People keep asking, "what do you want? What do you need?" I want my family back under the same roof, in the same city. I need my baby to get better. It's hard to not feel like you have been kicked in the proverbial nuts everyday. Somedays (like today) I need a proverbial jockstrap. This box of Girl Guide cookies will have to suffice. That, and a "good night" phone call to my love and a deep, dark sleep.
Wednesday 3 August 2011
Bursting
What a glorious, extra long, long weekend. Kris took a few days off work so we could celebrate our anniversary together. It was so nice to get some extra time with him, and Eleanor loved the added attention. It also made moving back to 3B extremely easy! That's right, we are back to "normal"! Well, the Parent's Lounge is still quarantined and all my food is in there, but aside from that, normal! What a crazy week, but as I said, having Kris around over the weekend made it so much better. We even made it out for an anniversary dinner!
I must interject my thoughts here and draw attention to some very special people. Last night I got a "poppy-inny" from an old, old, old friend from elementary school, Natalie. She came by with a bag of delicious food, and I panicked as Eleanor was trying to get down for the night, and I wanted to get some alone time with Kris, and she simply gave me a hug and didn't fuss and off she went. I am in love with this girl, especially as all the food that was given to me last week (thank you Steph and Yung!!!) is currently behind a sealed door! Anyway, Kris and I run off into the night and decide to go for dinner. We can't afford it, but it's our anniversary, so we indulge. We're halfway through our meal when an old, old friend from high school pops over to say hi. Graham is a lovely guy who helped me with my fundraising for the NYC marathon two years ago. He regaled us with stories of his next endurance challenge and gave us big hugs and off he went. Well, when we went to pay the bill, the waitress informed us that an old friend had taken care of it. That poor waitress. I burst out crying (and am starting up again as I type this) and pretty much fell apart in the middle of the restaurant. My heart aches from these acts and I wonder how can people be so good? I think of all the good people in Mocute's Lithuanian church in Toronto who don't know Eleanor, and yet they held special masses just for her. I think of a patient of my dad's who got her church to do the same thing. I am overwhelmed by how much love and support a tiny being can receive, and how Kris and I, who are really just two douchebags standing in her shadow, can also be the beneficiaries of such incredible love and light. Some days it is too much for my broken heart to take.
Eleanor has been great. More than great, in fact, she has been super. Her oncologist was lurking around the ward yesterday and didn't even stop in to see her. What's there to say? She's perfect. Her counts are still super high today, so we get another day out. I'm on my own, so I have no idea what to do. Hmmmm... Anybody want to play?
I must interject my thoughts here and draw attention to some very special people. Last night I got a "poppy-inny" from an old, old, old friend from elementary school, Natalie. She came by with a bag of delicious food, and I panicked as Eleanor was trying to get down for the night, and I wanted to get some alone time with Kris, and she simply gave me a hug and didn't fuss and off she went. I am in love with this girl, especially as all the food that was given to me last week (thank you Steph and Yung!!!) is currently behind a sealed door! Anyway, Kris and I run off into the night and decide to go for dinner. We can't afford it, but it's our anniversary, so we indulge. We're halfway through our meal when an old, old friend from high school pops over to say hi. Graham is a lovely guy who helped me with my fundraising for the NYC marathon two years ago. He regaled us with stories of his next endurance challenge and gave us big hugs and off he went. Well, when we went to pay the bill, the waitress informed us that an old friend had taken care of it. That poor waitress. I burst out crying (and am starting up again as I type this) and pretty much fell apart in the middle of the restaurant. My heart aches from these acts and I wonder how can people be so good? I think of all the good people in Mocute's Lithuanian church in Toronto who don't know Eleanor, and yet they held special masses just for her. I think of a patient of my dad's who got her church to do the same thing. I am overwhelmed by how much love and support a tiny being can receive, and how Kris and I, who are really just two douchebags standing in her shadow, can also be the beneficiaries of such incredible love and light. Some days it is too much for my broken heart to take.
Eleanor has been great. More than great, in fact, she has been super. Her oncologist was lurking around the ward yesterday and didn't even stop in to see her. What's there to say? She's perfect. Her counts are still super high today, so we get another day out. I'm on my own, so I have no idea what to do. Hmmmm... Anybody want to play?
Monday 1 August 2011
Missing In Action
I feel like I have slipped behind on my posting. We have been going out on pass over the weekend, and the fresh air has knocked my socks off. It's incredible how tired I have been. Even now my eyelids are drooping, and it's not even 9:00pm. Eleanor is doing great. Her counts are really high still and they should start dropping over the week. Although it's great to get this time with her while she is still feeling so good, we are a bit anxious for her to dip as the sooner her counts drop, the sooner she will feel better and the sooner we can go home! Our docs are quite anxious to discharge us and get us back to normal life, even if it's just for a few days. I'm getting ahead of myself. I need sleep tonight to look after my baby tomorrow and tomorrow and tomorrow. Sleep!
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