Comfortably Numb

I slept terribly last night. After Eleanor went to bed, I jumped into the tub with Penelope. I'm not big into bathing newborns, but when I do it, I like to bathe with them. I carefully washed her little face with its outbreak of baby acne, and I made sure to clean between the folds on her neck. I tilted her ever so slightly to the side to get a better angle, and suddenly I was no longer holding Penelope, I was face-to-face with baby Eleanor. Not cute, lovely newborn Eleanor but cancer-stricken, cushinoid, greasy, spotty Eleanor. A lump rose in throat as I rolled her onto her back and she morphed back into herself. Just a regular newborn with a regular skin irritation. I remind myself (for the 18th time that day) that Eleanor's symptoms came out much later and that the likelihood of Penelope having the same cancer is nearly impossible...

Even so, I didn't sleep well last night.

We got the call this morning from the geneticist in Vancouver. Penelope does NOT have Li Fraumeni! She was so excited to give us good news (unlike the shitstorm she gave us in April) that she bypassed formalities and procedures and called us the second she got into her office. It's wonderful news and we are breathing a sigh of relief for her. I am slowly realising that her baby acne is just that, and nothing more. She is going to be okay.

And with that, I'm full of sorrow for Kris and Eleanor. This news doesn't change anything for them and that makes it all seem bittersweet. Or maybe my post- birth hormones are raging and have cancelled everything out. Either way, I'm not as elated as I thought I'd be. But it's good news, and I like good news.

And I like that she's practically perfect. Practically Perfect Penny Prim.

Mother's Day

Today I'm thinking about all the folks out there who aren't wishing mamas a "Happy Mothers Day", either because they've lost their mamas or have lost their babies. 

So, so, so grateful to have these two knuckleheads and hold them close. So proud to be their mum.

xoxox

The honeymoon is OVER

Back to life, back to reality...

Kris has gone back to work. Our little honeymoon (baby moon?) is over. I'm done my "mat leave" and have been ferrying Eleanor around to all her appointments, and we have some new ones! Today we went to see a nutritionist about her diet and soon we get to see an ophthalmologist about her lazy right eye!

See? It's cute, but questionable and it's getting worse

Just a weensy bit wonky.

I'm keeping my fingers crossed (just like her eyes...hardy har har...) that it's nothing and will resolve itself. The idea of putting glasses or a patch on Eleanor seems, well, just about impossible. The nutritionist consultation was pretty lack lustre, but she did offer some helpful advice. Now I just have to put it into practice. Next week we are back to the hospital to see our oncologist and our endocrinologist.  No rest for the wicked around here!

We've got a post-partum doula coming round this week to help me out for a few hours, but I'm still exhausted. Kris just got home and he barely put his bag down before I ushered him out the door with Eleanor. "We need milk! Go get milk!" I'm lucky he is so compliant. Baby Penelope is just that - a baby. She has her own prerogative of sleeping and eating and I am just along for the journey. Some nights are better than others, and last night - though it started beautifully - went downhill after about 2:30 and mama was up allllllll night. I'm not complaining, nor I am cursing my beautiful baby. I knew there would be days (and nights) like this. I just have to remember to take care of myself by drinking as much caffeine as humanly possible. Right?

Just keep swimming, just keep swimming...

I'm very, very proud of the weight gain both my girls have had. Eleanor is up to 12kg (26.5lbs) and Penelope was 3.9kg (8.3lbs) last week, and is probably closing in on 9lbs this week. Both seem to be in very good health and Eleanor has been miraculously free of colds/sniffles/snotty noses since the baby arrived. She has also been noticeably absent from all her playgroups where she GETS all those lovely things! I'm hoping to get back to the fun stuff soon, and not just her doctor's appointments.

Gah. The wee one just woke up (she's harnassed to my chest as I write this). I imagine my blogging will become even LESS frequent now (is that even possible?) but I will do my best to keep updates on Miss Eleanor here and on her Facebook page (Support For Baby Eleanor).

And just for good measure, here are some sleepy time photos...

Grace, Faith and Hope

I'm in love. I'm in love with a little, amorphous blob that emerged from me one week ago. She looks so much like her big sister at this stage, it's scary.

Baby Eleanor

Baby Penelope

But this one is a sleepy panda. She eats, poops and sleeps and that suits me just fine.

I went into labour late on Tuesday night. I had woken up that morning and announced that today was the day and sure enough, that's what happened! I laboured at home with my doula from 10:30pm til 2:30am before we made the move to the hospital. Kris had a big meeting in the morning, so I let him sleep until the last minute. He was so confused to find my mum and my doula sitting in the kitchen! We met our midwife at the hospital at 3:00am and things started to get pretty intense, but it was apparent that this baby would be coming sooner rather than later. After an hour, we broke my water, which was shockingly painful and made me curse my midwife - who is lovely and not mean and should never be spoken to in such a manner - and I started to push. Pushing was super scary for me. I remember it being scary with Eleanor, but I had an epidural, so I was a little further removed from the sensations. With this one, I was feeling everything physically and emotionally and it was extremely draining. It felt like hours, but it was only about 30 minutes. I got a bit panicked at one point and bit my doula on the shoulder. Whoops! I think I owe her a tip for that...

But at 4:32am, little Penelope Primrose Goudie entered the world.

I'm not big into virtue names. I could never name my child Valor or Liberty, but I kind of get why people do. Penelope is Greek for "weaver" and it just seems to fit perfectly for this little lady. A weaver takes objects, be it fabric or wicker or whatever, and through an enormous amount of care, talent and inherent ability, transforms these simple objects into something durable, lasting and beautiful.

She's putting us all back together. 

Her middle name is a testament to faith, and no matter how bad the winter, spring will always come. 

I've got love goggles on. All I can see is love. Even when Atia pees in the bathroom and Eleanor pulls my mug of cold tea onto the floor (and all over her, of course) and when I am changing newborn blowout diapers. My heart is full. My cup runeth over. People keep asking about Penelope's blood work and when we will get results. I don't know. And right now, I don't care. I can't see Eleanor as anything but a mischievous 2-year old. I don't see her delays, I don't see her scars, I just see HER - a vibrant, cheeky little girl. And Penelope, well, yeah. How could I possibly see her as any way other than perfect? She is perfect! I left her on the bed to go pee and she started to cry. A familiar sensation of frustration crept up through my bones. Why can't you just let me go to the bathroom? But the instant I lay my eyes on her sweet little face, all those feelings disappeared, and I just love her. It's an incredible thing to just love and watch your love grow right before your eyes.

I've spent the last week sitting on my "perch". I sit on the chaise part of our couch and I nurse my baby and I hold her while she sleeps. I am fighting hard to stay still and stay close. I was able to really honour the "fourth trimester" with Eleanor and I know I won't be able to do the same this time. It makes me a little bit sad that the second child (and all subsequent children) won't get that same undivided attention. So I just get where I can, so to speak. Eleanor has taken to her little sister remarkably well. I was so apprehensive coming home from the hospital. My hormones were raging, as they tend to do 24 hours after birth, and Eleanor was having a nap. Right from the get-go my plans were out the window. I thought I would walk into the house on my own, greet Eleanor and then introduce her to the baby, who would be carried by someone else. So...plan B? Eleanor sleeps, baby sleeps in car seat and Mummy has a complete panic attack. Luckily my doula came over to visit and smoothed everything over (i.e.: told me to stop freaking out and made everything much less monumental and much more ordinary). Eleanor woke up and I got her out of her crib. She wasn't ready to wake up and was pretty cranky. She didn't want me AT ALL. So we allowed her to wake up for a few minutes and then went and woke up the baby. I'll never forget that look on her face - it's like she knew that this was her sister, and not just another baby. It wasn't love at first sight, but it was an understanding. And then she went totally koo-koo for her. She just wanted to hug and kiss her all afternoon. And she hasn't really stopped since!

It's far from perfect, but it feels right. This whole experience has filled me with hope. I'm so glad Eleanor is a big sister. It's a role that fits her really well. I am really happy that Kris and I are parents to two kids. Atia isn't overly thrilled, but her vote doesn't really count anymore as she is grossly outnumbered.

I think she will be okay. I think we will all be okay.

They Say The Best Revenge

Is living well.

 

 

 

We've been doing just that. This last trimester of pregnancy has taken the wind out of my sails, and I have been reluctant to write. I don't want to seem ungrateful - because I'm grateful for every healthy day - but I know I am not myself as of late. Being pregnant is hard work and raising a cancer-fighting toddler is not for the feint of heart. But I get up every morning and put my best foot forward. I feed and clothe my daughter and make sure she is happy, same as any other mother. Kris and I are treading the path back to normalcy, step by step, day by day.

Until yesterday.

Yesterday we received some pretty devastating news. We found out that Eleanor's Li Fraumeni syndrome is NOT an anomaly mutation that occurred only in her. We found out that Kris has it. The geneticist was as stunned as we were. Given his family history of no childhood cancer, they all figured that there was no way he could have it. But he does, and by some grace of God he has reached the age of 40 without getting cancer. Apparently men fair better with this condition because the big nasty cancer that falls under this syndrome is breast cancer. So girls get it worse.

Girls like Eleanor.

And the baby girl I've been gestating for the past nine months.

She's got a 50/50 chance of being a Li Fraumeni baby. When she decides to make her appearance (we are in the "any day now" phase), we will extract some cord blood and send it off the geneticist. They are not great odds, but we are hopeful. Just because Eleanor high-fived death at six-months of age doesn't mean this baby will. And because we now KNOW what we are up against, we can screen and test before things get out of control, like they did with Eleanor. And the same goes for Kris. We will be a regular, cancer-fearing/fighting family.

Except me. I'll be the odd man out. I feel like Marge Simpson in the "Who Shot Mr. Burns" episode of The Simpsons where she emphatically declares that "when I took your father's name, I took everything that went with it, INCLUDING DNA!!!" All jokes aside, I'm silently screaming TAKE ME INSTEAD. Everyone I hold so close to my heart is affected by this. It's a lot to take in, especially in my overly hormonal state, but it's much, much worse for Kris. He's putting on a brave face and is diligently doing his daddy duty and his doggy duty and his crazy-pregnant-lady-punching-bag duty, but he's struggling. I can't pretend to know what it would feel like. He will very likely get cancer soon. He now lives with the burden of knowing something inside him was passed on to Eleanor that made her very sick. That is so messed up.

Genetics are freaky.

But had we known, would we have done anything differently?

Not a chance. We'll take it day by day, and keep growing and keep loving each other.



Loving and living.

Day Trippin'

I took my dog out for a walk this morning. I'm leaving her and Eleanor in the care of husband today, and I figured I owed it to him to at least run the snot out of her so he can focus on Eleanor. We went down to the beach and it was impossibly beautiful. Stunning. It's usually really still and calm down there, but today there were little waves rolling in - I guess the residual effect from the windstorm yesterday. The sun was breaking through a thick veil of clouds and there wasn't a soul around. The sound of the waves drowned at all the thoughts in my head. Atia enthusiastically bounded along, acutely aware of how special this morning was. I tossed sticks and chased her (as best I could with my extra girth) and felt my heart lighten. When we reached the far end, I turned to come back and noticed there were people where there hadn't been any before. It's not a big deal, I told myself, they are just coming to enjoy what you are enjoying.

And yet, they frustrated me. I'm on edge these days. Eleanor is coming up to her 3-month scan and this one has me scared more than any other one we have done. I have thrown myself into logistics of traveling to Vancouver, setting up appointments, booking hotel rooms and have drowned out the reason we are going. I keep myself busy with our day-to-day commitments and don't think about what might be lurking inside her. I follow a couple of cancer blogs. A few are families we know from the hospital and a few are adrenal cancer sufferers. There are getting to be fewer and fewer. They are all the same, whether they are pediatric or adult patients; they just play whack-a-mole to try and keep they ever-spreading nodules at bay. But nothing works, and they are all slowly dying.

One of them had me particularly vexed. This girl has stage IV ACC (like Eleanor) and had everything surgically removed and no chemotherapy. Her dad works as a pharmaceutical rep for a company that specializes in chemo drugs and he felt that chemo was pointless. Two years post-diagnosis and a whole bunch of tumors have popped up in her abdomen. She was having stomach pains, so they scanned her and there they were.

It's just like walking along a noisy, bright beach, loving your life and thinking you're alone, but right behind you is a couple in matching yellow raincoats.

Oh, hi.

Eleanor has been fussing a lot lately. Everything about her indicates that she is the picture of health. Her blood work is impeccable, her strength is improving, her confidence is growing - she is great. And yet, we have these stupid scans that have me losing sleep. Well, and Eleanor has quit sleeping, so I'm losing sleep because of that as well. It is probably harder this time because she IS better, so she can't GET better. She has nowhere to go but down, unless it comes back the same which we all sincerely hope it does.

It doesn't help that the reason I'm day tripping today is for a funeral of one of our cancer buddies. We became friendly with this family at the urging of our social worker because our stories were so similar - as in they were both dire. Both Eleanor and Jeremy rallied and had setbacks. They both got great news but Jeremy got bad news back in November and it never really improved, God love him. The service was amazing, and his dad and grandparents all spoke beautifully. The hall was packed with friends and family and tons of staff from BCCH, which was very touching. Jeremy had an insanely short life, but he brought a lot of joy to those around him. He was always the happiest baby on the ward, even when he was confined to his bed when the chemo kept collapsing his little lungs. He would still smile and coo at all his visitors despite his obvious ailments. We all walked down to a lookout point and released balloons to say goodbye, and there must've been a dozen bald eagles soaring overhead and engaging in their mating "dance". It was a really special send off for a really special little guy. I hope his parents find comfort in their close-knit family and big sister Chloe during this trying time. My thoughts are constantly with them.

I am currently in transit to go back to my safe world, drowned out by the sounds of the ocean. Away from scans, away from babies dying, away from our memories of Vancouver. I can't wait to crawl into my bed tonight, say goodnight, say goodbye.

Summary Style

I haven't written in forever. I think I'm too pregnant/hormonal/emotional to write a blog right now. It all comes back to ME and MY FEELINGS and I don't mind that every now and then, but the posts I was writing were a touch ridiculous. SO I have come up with a way to get the most information out with the least amount of preggo-related emotions - bullet points!

Here is how Eleanor is doing.

ONCOLOGY
-all is quiet on the western front
-PET scan coming up in early March, so a short trip to Vancouver will be in order

ENDOCRINOLOGY
-hormones repressed
-cortisol balanced
-some overnight hypoglycemic episodes, but inconsistent. Not worried at this point

CARDIOLOGY
-discovered that she has a long QT, which is usually inherited and is an electrical problem that causes people to drop dead
-cardiologist and geneticist suspect that it's due to all the treatment she has been through
-Kris and I are both doing ECGs to be safe
-no treatment for Eleanor at the moment as each ECG shows a slight improvement. If symptoms persist, she will go back on the beta-blocker and a difibulater (sp?) will be discussed when she is a pre-teen

PHYSICAL THERAPY
-continues to make up for lost time
-cruises everywhere: along walls, cupboards, the fridge. Fast becoming her favourite way to get around
-very adept at using her walker
-climbs and descends stairs beautifully
-still favors her left side, but I am working hard to engage the right side

SPEECH THERAPY
-haven't officially started, but working with a couple of pointers from ST about hearing loss
• eliminate background noise
• make sure she can see my face
• over-enunciate dropped sounds ("f", "sh", "tss" etc)
-"nyo" and "ba" are new sounds this week
-answers "yup" and "nyo" to yes/no questions (and they actually make sense!)

IDP/EARLY INTERVENTION/GENERAL
-steadily gaining in weight and height (10.4kg and 80cm)
-eating and drinking really well. Finally!
-transitioning to 1 nap a day and is finally starting to adjust after a few restless weeks
-can follow two commands (get Dolly and put her hat on)
-can sign along to "The More We Get Together" and does it for ANY song she likes
-dances (must post video - she's not very good!)
-has no idea about the baby that is going to drop out of me in two months time, but loves slapping my tummy
-got her first haircut

Here comes the photo bomb!!!