Written November 8, 2012
Finally got my date for the anatomy ultrasound. It's on the 22nd and I will be 19 weeks on the nose. I was checking the mailbox obsessively for weeks but I guess I missed the notification. They mailed it out six weeks ago! Oh well. I have the date now and I can breathe a little easier once it's done. I guess because we've run the course of having a sick child, I am stuck in this mentality that ALL our children will be sick. I just want to see a skull with a brain inside it and two arms and legs and a closed spine. And please, no more cancer.
Edited November 30 - I had the date of my ultrasound moved to accommodate Eleanor's most recent scans. It was actually yesterday on November 29th.
Friday 30 November 2012
The Secret Posts: part 5
Written October 18, 2012
Atia hasn't gotten into our bed since I went into labour with Eleanor. Looks like her spidey-sense is tingling!
Atia hasn't gotten into our bed since I went into labour with Eleanor. Looks like her spidey-sense is tingling!
The Secret Posts: part 4
Written October 16, 2012
My genetic test came back negative for Li Fraumeni. Small sigh of relief. Kris still hasn't done his blood test, but the geneticist was pretty confident that nothing abnormal would show up.
Baby is nearly 14 weeks. It has a heartbeat and I'm pretty sure I have felt him/her grooving on occasion. Eleanor continues to pile-drive her sibling which always makes me smile. Sibling rivalry! They start so young... Exhaustion and dizziness are my two constant compadres so I am upping my iron. I hate taking so many supplements but I really feel better with more iron. As the second trimester dawns I will hopefully start to feel a bit better - I am definitely feeling better than I did with Eleanor, and I am sleeping WAY less now - so woo hoo! Let's keep this party going!
My genetic test came back negative for Li Fraumeni. Small sigh of relief. Kris still hasn't done his blood test, but the geneticist was pretty confident that nothing abnormal would show up.
Baby is nearly 14 weeks. It has a heartbeat and I'm pretty sure I have felt him/her grooving on occasion. Eleanor continues to pile-drive her sibling which always makes me smile. Sibling rivalry! They start so young... Exhaustion and dizziness are my two constant compadres so I am upping my iron. I hate taking so many supplements but I really feel better with more iron. As the second trimester dawns I will hopefully start to feel a bit better - I am definitely feeling better than I did with Eleanor, and I am sleeping WAY less now - so woo hoo! Let's keep this party going!
The Secret Posts: part 3
Written September 15, 2012
Well, I'm out. Out of the marathon, that is. After two weeks of intense nausea and fatigue that was preceded by two weeks of hospital nonsense, I am officially throwing in the towel. I am sure I could of physically if I really committed, but mentally I am a million miles from being able to cover the distance. It's too much for me. Someone else might be able to, but not me. Not this time. I am slowly accepting this. I am embracing my growing belly and super sore boobs and moving forward.
We've finally sorted out the genetics conundrum, which was not easy. I spent a lot of time quietly mulling it over and Kris didn't. He didn't want to think about it all, God love him. I feel very blessed to have a partner that I truly understand, even if we don't do things they same way, or see eye-to-eye all the time. So I helped him work through it and we have come to a decision together that we can both live with. There is no question that we are keeping this baby. I am staunchly pro-choice, but it doesn't make sense to us that we would terminate a life when we have fought do hard to save another. We are keeping this little nugget, no matter what the future holds for him/her. If s/he turns out to have Li Fraumeni, we will deal with it the same way we have dealt with this. If s/he turns out to have some other condition, then we will deal with it and love him/her with all our might.
We are growing our hearts by growing our family. I feel like I might burst. And I love it.
Well, I'm out. Out of the marathon, that is. After two weeks of intense nausea and fatigue that was preceded by two weeks of hospital nonsense, I am officially throwing in the towel. I am sure I could of physically if I really committed, but mentally I am a million miles from being able to cover the distance. It's too much for me. Someone else might be able to, but not me. Not this time. I am slowly accepting this. I am embracing my growing belly and super sore boobs and moving forward.
We've finally sorted out the genetics conundrum, which was not easy. I spent a lot of time quietly mulling it over and Kris didn't. He didn't want to think about it all, God love him. I feel very blessed to have a partner that I truly understand, even if we don't do things they same way, or see eye-to-eye all the time. So I helped him work through it and we have come to a decision together that we can both live with. There is no question that we are keeping this baby. I am staunchly pro-choice, but it doesn't make sense to us that we would terminate a life when we have fought do hard to save another. We are keeping this little nugget, no matter what the future holds for him/her. If s/he turns out to have Li Fraumeni, we will deal with it the same way we have dealt with this. If s/he turns out to have some other condition, then we will deal with it and love him/her with all our might.
We are growing our hearts by growing our family. I feel like I might burst. And I love it.
The Secret Posts: part 2
Written August 30, 2012
We met with a genetic counsellor yesterday. We weren't supposed to, but when I saw Jen the day prior, it got me thinking that we should. We filled out forms back in December to get requisitions for a p53 blood draw. We never got the reqs and put it out of our minds. The geneticist said the likelihood of either us having this mutation was slim, so why bother with a blood test to prove what we already know? Well, now it's not just me and Kris who need to worry, it's this little embryo tucked in my belly that has a million question marks all over it.
Our options are these:
1) Do nothing. Continue down the same path we are on now, which assumes that Eleanor's Li Fraumeni is a mutation that lives in her and only her and everyone else will be cancer-free forever and ever, amen.
2) Do the blood test. It will take 6-8 weeks to get the results, which will probably be negative, and continue down the path laid out in Option 1.
3) Push past the notion that WE are carriers and check to see if our GONADS are carriers. It is possible that my eggs and/or Kris's sperm could have a mutation that creates cancer babies. It's extremely rare, but still possible.
If Option 2 or 3 comes back with evidence of a mutation, we have a 50% of making more Li Fraumeni babies. They could do an amniocentesis at 16 weeks gestation and determine once and for all if this little dude or chick in my tummy is the same as Eleanor. Then we decide what we want to do - terminate or do this all over again.
But if everything comes back clear, and I have a healthy pregnancy and a healthy baby, this child will be the closest genetic match to Eleanor. I am desperately trying to get her oncologist on the phone so we can talk Mad Hatter science. He is ALWAYS asking if I'm pregnant or "are you thinking about more?" which are grossly inappropriate questions, but I know he has some tricks up his sleeve. I know he wants to do a stem cell transplant on her to see if he can erase the Li Fraumeni mutation. Wouldn't that be something?
So we have a lot to think about. A lot more than nursery colours or what style double stroller to purchase, that's for sure!
We met with a genetic counsellor yesterday. We weren't supposed to, but when I saw Jen the day prior, it got me thinking that we should. We filled out forms back in December to get requisitions for a p53 blood draw. We never got the reqs and put it out of our minds. The geneticist said the likelihood of either us having this mutation was slim, so why bother with a blood test to prove what we already know? Well, now it's not just me and Kris who need to worry, it's this little embryo tucked in my belly that has a million question marks all over it.
Our options are these:
1) Do nothing. Continue down the same path we are on now, which assumes that Eleanor's Li Fraumeni is a mutation that lives in her and only her and everyone else will be cancer-free forever and ever, amen.
2) Do the blood test. It will take 6-8 weeks to get the results, which will probably be negative, and continue down the path laid out in Option 1.
3) Push past the notion that WE are carriers and check to see if our GONADS are carriers. It is possible that my eggs and/or Kris's sperm could have a mutation that creates cancer babies. It's extremely rare, but still possible.
If Option 2 or 3 comes back with evidence of a mutation, we have a 50% of making more Li Fraumeni babies. They could do an amniocentesis at 16 weeks gestation and determine once and for all if this little dude or chick in my tummy is the same as Eleanor. Then we decide what we want to do - terminate or do this all over again.
But if everything comes back clear, and I have a healthy pregnancy and a healthy baby, this child will be the closest genetic match to Eleanor. I am desperately trying to get her oncologist on the phone so we can talk Mad Hatter science. He is ALWAYS asking if I'm pregnant or "are you thinking about more?" which are grossly inappropriate questions, but I know he has some tricks up his sleeve. I know he wants to do a stem cell transplant on her to see if he can erase the Li Fraumeni mutation. Wouldn't that be something?
So we have a lot to think about. A lot more than nursery colours or what style double stroller to purchase, that's for sure!
The Secret Posts: part 1
Written August 20, 2012
It is a cooler and slightly gloomy Monday. Eleanor woke at 4am, screaming. It was so loud I thought she would never settle. Kris brought her into bed and she immediately snuggled into me and fell asleep with my arm wrapped around her. It was wonderful, except I didn't go back to sleep. I had to pee and my hips ached from lying on my side. I'm only 5.5 weeks in and already some of the symptoms I experienced later in my pregnancy with Eleanor are coming out to play. I managed to squeeze in 40 minutes of dream-filled sleep after she woke up an hour or so later.
In order to minimize suspicion, I am getting my blood work done at 7:30am and Kris is at home watching the baby. It's so different from last time. Last time everyone in our families knew before I was 8 weeks. It was so hard to keep our mouths shut. Kris told cab drivers, coffee baristas, bartenders...pretty much anyone who would listen. Now we are telling noone. It's a nice feeling, keeping it private, but there are still a lot of butterflies. I'm not thinking long term at all. I am literally taking it day by day. If it turns out to be viable (God willing), then I will start making plans. Until then, I will just relish in how good my jeans fit when I pulled them on this morning. Haven't worn them in weeks and am delighted in how comfy they still are. No early bloating for me! Long may it last.
It is a cooler and slightly gloomy Monday. Eleanor woke at 4am, screaming. It was so loud I thought she would never settle. Kris brought her into bed and she immediately snuggled into me and fell asleep with my arm wrapped around her. It was wonderful, except I didn't go back to sleep. I had to pee and my hips ached from lying on my side. I'm only 5.5 weeks in and already some of the symptoms I experienced later in my pregnancy with Eleanor are coming out to play. I managed to squeeze in 40 minutes of dream-filled sleep after she woke up an hour or so later.
In order to minimize suspicion, I am getting my blood work done at 7:30am and Kris is at home watching the baby. It's so different from last time. Last time everyone in our families knew before I was 8 weeks. It was so hard to keep our mouths shut. Kris told cab drivers, coffee baristas, bartenders...pretty much anyone who would listen. Now we are telling noone. It's a nice feeling, keeping it private, but there are still a lot of butterflies. I'm not thinking long term at all. I am literally taking it day by day. If it turns out to be viable (God willing), then I will start making plans. Until then, I will just relish in how good my jeans fit when I pulled them on this morning. Haven't worn them in weeks and am delighted in how comfy they still are. No early bloating for me! Long may it last.
THANK U
We've gotten such sweet messages from all our friends around the world and I want to say a huge, heartfelt THANK YOU! We are very excited to be growing our little family, and a decision this major didn't come without careful consideration and a lot of worry, so it's wonderful to hear positive feedback! I was nervous to come forward and tell the world (up til now only a few friends and family knew), but I am thrilled to have "outed" myself. Well, maybe I'm just thrilled that I finally got to see the babe and it looks SO NORMAL.
I have been terrified that something would be horribly wrong with little Chewbacca/Chewbacqueena (we don't know the gender). It was a huge relief to be able to see 10 fingers, 10 toes, 2, legs, 2 arms, 2 kidneys (and no abnormal growth around them), all the bones in all the right places and 1 brain encapsulated by a GIANT GOUDIE HEAD. Eleanor showed us at her ultrasound that she was all Barry. She had my exact profile, complete with ski-jump nose, and she looks more like me every single day. This nugget, however, looks very little like Eleanor did, and the giant cranium suggests it will look much more like daddy. Exciting, but weird. I realized then (and this probably sounds stupid) that this baby is NOT Eleanor. It's a whole other person. A whole other healthy-looking person, but you know what? Even if baby comes out with something unforeseen, I'm okay with that.
I've lived the past 18 months in fear. I'm scared of my daughter's disease, scared of her dying and scared that our next child will have the same mutation and live a cancer-ridden life. Gradually this last fear has faded. I understand that Eleanor having Li Fraumeni was an anomaly, but what if our other children developed or were born with something else? What would become of us? I met a very nice mother who told me that she was stopping at two children because both her kids and her husband had bad, sometimes life-threatening food allergies, and they were all allergic to different things. She found mealtimes so stressful that she decided two was enough. Her thoughts stuck with me and I wondered if I should stick to one child because my one child is so complicated. I realized that that was just fear talking. Sure, this baby could have something wrong with it, but you know what? I am a really good mum to a sick kid. I mean, I don't toot my horn very often, but I got this. This is the best job I have ever done and I frigging love it. So if Chewy develops ADHD or is on the Autism spectrum or has diabetes or WHATEVER, bring it on. I'm going to love him/her no matter what and make sure s/he has the best life possible. I'm not scared anymore.
I have been writing a few musings-type posts over the past 20 weeks of my pregnancy and I will post them up later tonight. I have dubbed them "The Secret Posts", like a secret song at the end of a cd. You all remember cds, right? Anyway, they aren't really Eleanor related so I always feel a little weird posting them, but if you feel so inclined, they will be there.
Oh, speaking of Eleanor, I don't think she is at all aware of the baby we keep talking to her about, but she can sign "baby" and she can also pile-drive my uterus like no-one's business! Sibling rivalry may have started already!
I have been terrified that something would be horribly wrong with little Chewbacca/Chewbacqueena (we don't know the gender). It was a huge relief to be able to see 10 fingers, 10 toes, 2, legs, 2 arms, 2 kidneys (and no abnormal growth around them), all the bones in all the right places and 1 brain encapsulated by a GIANT GOUDIE HEAD. Eleanor showed us at her ultrasound that she was all Barry. She had my exact profile, complete with ski-jump nose, and she looks more like me every single day. This nugget, however, looks very little like Eleanor did, and the giant cranium suggests it will look much more like daddy. Exciting, but weird. I realized then (and this probably sounds stupid) that this baby is NOT Eleanor. It's a whole other person. A whole other healthy-looking person, but you know what? Even if baby comes out with something unforeseen, I'm okay with that.
I've lived the past 18 months in fear. I'm scared of my daughter's disease, scared of her dying and scared that our next child will have the same mutation and live a cancer-ridden life. Gradually this last fear has faded. I understand that Eleanor having Li Fraumeni was an anomaly, but what if our other children developed or were born with something else? What would become of us? I met a very nice mother who told me that she was stopping at two children because both her kids and her husband had bad, sometimes life-threatening food allergies, and they were all allergic to different things. She found mealtimes so stressful that she decided two was enough. Her thoughts stuck with me and I wondered if I should stick to one child because my one child is so complicated. I realized that that was just fear talking. Sure, this baby could have something wrong with it, but you know what? I am a really good mum to a sick kid. I mean, I don't toot my horn very often, but I got this. This is the best job I have ever done and I frigging love it. So if Chewy develops ADHD or is on the Autism spectrum or has diabetes or WHATEVER, bring it on. I'm going to love him/her no matter what and make sure s/he has the best life possible. I'm not scared anymore.
I have been writing a few musings-type posts over the past 20 weeks of my pregnancy and I will post them up later tonight. I have dubbed them "The Secret Posts", like a secret song at the end of a cd. You all remember cds, right? Anyway, they aren't really Eleanor related so I always feel a little weird posting them, but if you feel so inclined, they will be there.
Oh, speaking of Eleanor, I don't think she is at all aware of the baby we keep talking to her about, but she can sign "baby" and she can also pile-drive my uterus like no-one's business! Sibling rivalry may have started already!
Thursday 29 November 2012
November Rain
November always makes me listen to more Regina Spektor. She's got enough Russian sombre-ness and catchy pop-ness that balances out the darkness of November. And on days like today, when the sun seems to be brought in on the wind and waves, she seems especially poignant.
This is how it works
You're young until you're not
You love until you don't
You try until you can't
You laugh until you cry
You cry until you laugh
And everyone must breathe
Until their dying breath
No, this is how it works
You peer inside yourself
You take the things you like
And try to love the things you took
And then you take that love you made
And stick it into some
Someone else's heart
Pumping someone else's blood
And walking arm in arm
You hope it don't get harmed
But even if it does...
You'll just do it all again
And on the radio
You hear November Rain
That solo's awful long
But it's a good refrain
This is how it works
You're young until you're not
You love until you don't
You try until you can't
You laugh until you cry
You cry until you laugh
And everyone must breathe
Until their dying breath
No, this is how it works
You peer inside yourself
You take the things you like
And try to love the things you took
And then you take that love you made
And stick it into some
Someone else's heart
And walking arm in arm
You hope it don't get harmed
You'll just do it all again
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| Love you already, baby Goudie... |
And on the radio
You hear November Rain
That solo's awful long
But it's a good refrain
 |
| Hi. Can't wait to meet you mid-April! |
Friday 23 November 2012
November Scans
After much back-and-forth between Children's, we got Eleanor's scans completed. Whew! Originally we were looking at three days over there with one appointment per day, but we were able to whittle it down to only two days, one night. It made for a long couple of days, but hey, it is always a long couple of days! It was really nice to only have one night in the hotel though.
Eleanor and I left at 5:20am on Wednesday morning to first pick up Granny (our travel companion for the trip) and then to head out for the 7am ferry. Eleanor was supposed to be NPO (nothing by mouth) for 8 hours prior to her 11:15am scans, but I raised my concern to the nurses in day surgery because of her hypoglycaemia, so we were able to modify it a little bit. She could drink milk when she woke up (she had 3-4 ounces) and could drink clear fluids (apple juice, popsicles and water) for an extra hour. It didn't help much. We checked her blood sugar before sedation and she was dangerously low. I was honestly surprised because she had been in such good spirits travelling over on the ferry. She wasn't shaky or crying or symptomatic at all.
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| Dolly's well-being was of most concern |
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| We are OK! |
Anyway, it went off without a hitch. She was typically cranky when she came to and was STARVING. She gets a stress dose of cortef any time she is put under, so couple that with the fact she hadn't eaten since 6pm the night before, and you have one hungry girl! After attempting and failing at getting popsicles and sugar water into her, they finally let me feed her. She isn't supposed to eat for 6 hours or something ridiculous after sedation. She's never made it more than an hour. She scarfed down a cup of cheerios and a piece of banana bread and was back to her happy self! We got her dressed and went round to the oncology clinic and the wards to drop off some cookies and say hi to all our old friends. It was so great to see everyone and Eleanor was a champ. She was in the best mood! I was marvelling at her the whole day because she was so happy! I literally bawled my eyes out on Friday night last week because I was so exhausted from looking after a child that spent the entire week SCREAMING at me. And then this child who can't stop smiling and playing and flirting... It was a huge change in demeanour and she was in the hospital! Shouldn't she be more miserable? Whatever. I am just happy that she is happy! Granny and I were pretty tired by this point, so we made our way to White Spot where Eleanor enjoyed her first Pirate Pak. She had never eaten dinner in a restaurant before, so it was a really nice moment. I couldn't believe that we finished up at 6:30pm. Girlfriend had been going since 5:00am with only one short nap in the car. Mental.
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| Granny and I are busy colouring, Mum. |
Thursday started off very relaxed. We woke at 5:30 and chilled in the hotel until Eleanor's nap around 8am. We got our day started after that and headed over for a quick shop at Ikea. When in Richmond...! We got to the hospital for our appointment with Dr. Doom and Gloom (Schultz) at 1pm. He came in pretty bleak and was very concerned about her cortisol levels. Apparently they were off the chart. My hands started to sweat and my pulse raced. Her body doesn't produce cortisol so if it was high, something else in her was producing it... And then I realized that they must have drawn her blood AFTER they gave her the stress dose. Whew! We were both relieved to figure that out and his mood was much more jovial. He even used my phone to text Kris (who was frantically texting me) to let him know everything was fine. Cute. And weird. But cute.
Basically everything is the same as it ever was. Lots of tiny spots on her lungs that are unchanged and nothing in the tumour bed. He is quite concerned with her breast growth. They showed up on the scan as boobies. No weird growth, just normal prepubescent boobies, but obviously not normal because Eleanor is not even two. He really wants them to go away, but nobody has an explanation as to why they are there. Her puberty stimulation test came back normal, but her estrogen is elevated. Our new plan of attack is to do a PET scan, which is similar to a CT scan, but radioactive. If any tumours are in her body that are a) new or b) in an area we haven't checked before or c) malignant (I'm looking at you, random spots in lungs!), they will light up. If anything lights up, he would like to send a surgeon in to chop them out. If nothing lights up, we can assume that a) there is no evidence of active disease in her body (!!!!) and b) the Mitotane is causing her to grow boobies. If we are lucky enough to have the latter (and oh, God, I can't even let myself ruminate on it because OHMYGOD what if my daughter is cancer-free? What if I am not constantly looking over my shoulder and wondering is this her last birthday? Is this her last Halloween? WTF?!?!?! Shhh.... don't think about it now....), we would look at stopping the Mitotane fairly soon. This is not something to be taken lightly and Kris and I are very apprehensive about it. But if all signs say that she is fine without it...
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| Back to monkey business at 5 in the morning. I think she is happy to be home! |
Monday 19 November 2012
Whoops!
So somewhere along the way, Eleanor never got booked to go back to Children's. She is supposed to go every 3 months to get a chest CT scan and an abdominal MRI to check for any changes to the spots in her lungs or the tumour bed (recurrence most often will happen here). But it didn't happen! I was patiently waiting to hear and as November came barreling towards me, I started asking around and sure enough, no appointment was made. I have spent the last few days frantically emailing all the moving parts to make this trip happen. I have dozens of emails labeled "Eleanor's Scans" - which if I were still working would be relatively few - but now I'm a stay-at-home mum and it feels like I am very busy and important! But it's all organized and we are heading over for scans on Wednesday and a meeting with the good doctor and some cardiology stuff Thursday.
I'm kind of grateful we only had a week to prepare. It reduces the "scanxiety" by a whole truckload. I'm now too preoccupied with the actual act of getting us over there than the reason we are going over there. That said, when I informed Kris that we were going to Children's, he immediately started to panic. He seems to be compounding three months of stress into one week. Poor guy. I keep telling him/me that there is nothing to worry about right now - she's too strong, too ambitious, too... toddler to have anything wrong with her.
And yet...
She's really shrieky lately. I am nearly positive it's just Eleanor asserting herself and the start of the "terrible twos", but it's hard not to worry. She really hates her high chair. She arches her back and flails when I try to put her in. I'm guessing she doesn't like to be constrained but maybe something about it hurts her? She's also not eating very much, which I know is a normal ebb and flow of kids, but maybe not? Maybe it is just a cold. Maybe. Ugh. I guess I do have scanxiety. Maybe it never goes away. It seems the more "good" or "normal" scans we have, the less time we have before the bad scan. It will come eventually, we just hope and pray it will be a long, long ways a way.
I'm excited for the weekend, so I am just looking forward that. This week will be filler to the good stuff coming up. There is a fundraiser for our pediatric oncology department on Saturday night. I will post the info if any of you in Victoria are interested in coming out to support a great cause. And I get to meet a friend's new baby. Nothing like a new baby to make you feel all warm and fuzzy!
Hmmm. I better sign off as I can hear E stirring in her room. It's after 10pm, so this may be a sleepless night here. Better try and get some sleep in where I can!
I'm kind of grateful we only had a week to prepare. It reduces the "scanxiety" by a whole truckload. I'm now too preoccupied with the actual act of getting us over there than the reason we are going over there. That said, when I informed Kris that we were going to Children's, he immediately started to panic. He seems to be compounding three months of stress into one week. Poor guy. I keep telling him/me that there is nothing to worry about right now - she's too strong, too ambitious, too... toddler to have anything wrong with her.
And yet...
She's really shrieky lately. I am nearly positive it's just Eleanor asserting herself and the start of the "terrible twos", but it's hard not to worry. She really hates her high chair. She arches her back and flails when I try to put her in. I'm guessing she doesn't like to be constrained but maybe something about it hurts her? She's also not eating very much, which I know is a normal ebb and flow of kids, but maybe not? Maybe it is just a cold. Maybe. Ugh. I guess I do have scanxiety. Maybe it never goes away. It seems the more "good" or "normal" scans we have, the less time we have before the bad scan. It will come eventually, we just hope and pray it will be a long, long ways a way.
I'm excited for the weekend, so I am just looking forward that. This week will be filler to the good stuff coming up. There is a fundraiser for our pediatric oncology department on Saturday night. I will post the info if any of you in Victoria are interested in coming out to support a great cause. And I get to meet a friend's new baby. Nothing like a new baby to make you feel all warm and fuzzy!
Hmmm. I better sign off as I can hear E stirring in her room. It's after 10pm, so this may be a sleepless night here. Better try and get some sleep in where I can!
Thursday 8 November 2012
For Uncle Stu
I was chastised by my uncle the other day as I have not written a blog post in many moons. It's true. I haven't been in the mindset to write as everything has been kind of boring around here. Eleanor is switching on more and more as each day passes. She is comfortably cruising and getting more adventurous with her movements. She attempts to pull herself up on things that seem impossible (the hinge of a closed door? A knee-height toy?) and is being met with moderate amounts of success. She has excellent stamina now. She used to tire so quickly when we would practice standing or crawl around the room, but now she could go all day. Well, at least until her next nap! Her sleep is much improved, thanks to some med tweaking, late-night snackies and pushing her bedtime a little later. She sleeps 10 hours overnight (7pm-5am) and still naps twice a day, but sometimes skips her morning nap and does two hours in the afternoon. It all seems very normal, very boring.
Her last visit to the oncology clinic revealed that her Mitotane (adrenal suppressant/chemo-type pill) levels are astronomically high. She should sit between 14-20 on their measurement scale (I think it is ppl) and her last three blood draws put her at 33-38, which is considered highly toxic and very dangerous. Her oncologists agree that these blood draws cannot be accurate as she would have severe cognitive impairment if her levels were indeed this high. So we are just shooting from the hip and keeping her dose the same and hoping for the best. It seems to be all one can do with cancer.
I have a heavy heart this morning as I have learned of two new relapses - one of them dire, the other still undetermined. It seems that all the kids we knew at BCCH have suffered relapses. I can think of two others who have not (yet) been affected since finishing treatment, and a good 7-10 that have. It's really, really hard. I know that spending seven months on the ward meant that we would see the sickest of the sick, and that there are lots of kids who have cancer that are doing great, but it's hard when the only ones you know are suffering or dying. It brings on the inevitable question of "when is it our turn?" I am on a support board for people with adrenal cancer and a whole bunch of them have passed away in the last three months. 99% of them are adults and most of them courageously fought for many years as this is a cancer that is slow-to-grow, but I have hard time hearing this.
...I don't want to think about this anymore today. It's only 9am and I can't spend my day sobbing. Eleanor gets freaked out, and does a weird laugh/cry when I do and I don't like it.
So here are some cute photos from the last few weeks!
Her last visit to the oncology clinic revealed that her Mitotane (adrenal suppressant/chemo-type pill) levels are astronomically high. She should sit between 14-20 on their measurement scale (I think it is ppl) and her last three blood draws put her at 33-38, which is considered highly toxic and very dangerous. Her oncologists agree that these blood draws cannot be accurate as she would have severe cognitive impairment if her levels were indeed this high. So we are just shooting from the hip and keeping her dose the same and hoping for the best. It seems to be all one can do with cancer.
I have a heavy heart this morning as I have learned of two new relapses - one of them dire, the other still undetermined. It seems that all the kids we knew at BCCH have suffered relapses. I can think of two others who have not (yet) been affected since finishing treatment, and a good 7-10 that have. It's really, really hard. I know that spending seven months on the ward meant that we would see the sickest of the sick, and that there are lots of kids who have cancer that are doing great, but it's hard when the only ones you know are suffering or dying. It brings on the inevitable question of "when is it our turn?" I am on a support board for people with adrenal cancer and a whole bunch of them have passed away in the last three months. 99% of them are adults and most of them courageously fought for many years as this is a cancer that is slow-to-grow, but I have hard time hearing this.
...I don't want to think about this anymore today. It's only 9am and I can't spend my day sobbing. Eleanor gets freaked out, and does a weird laugh/cry when I do and I don't like it.
So here are some cute photos from the last few weeks!
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| Crankasaurus Rex after her swim |
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| Early morning shenanigans |
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| Late night snuggles |
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| Daddy-Daughter time |
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| Halloween! |
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| Sleeping angel. |
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