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is this a giant insulting moneky wrench? July 11, 2017

Filed under: Uncategorized — springtwist @ 9:32 pm

Everyone has been checking in with me to see how I am doing with all of this, and wanting to her updates from me so I wanted to do a bigger update about where I am right now and what I’ve been thinking about recently.



FIrst off: I really want to tell you all that I’m fine. I really am fine. It’s hard and I hate it and I would just about trade anything to make this not our life, but it is and we have to deal with it and keep carrying on because there’s no other choice. I couldn’t get off this crazy roller coaster if I wanted to, so there’s nothing to do but keep at it. And with all that in mind, I can tell you that I am coping okay. Do not worry about me. You all have been fantastic in helping us out with the things we need, supporting me at the hospital with food drop offs and jim at home with childcare and any odd jobs or groceries that he needs help with. There has also been a couple spontaneous and unexplained meals that have shown up on our doorstep. Thank you thank you thank you. Seriously when we were first diagnosed I thought that the novelty would wear off in a few months and the support would peter out. We are seven months in and that hasn’t happened. I shouldn’t be surprised by this at all.

 

I share these posts, and my photos and updates  with you guys because I want people to see this side of cancer. I don’t need sympathy but what I do need is for you to witness the hard side of this, because it is not often portrayed or talked about, and it’s important that it is. Many families go through this. The boy in the room next door, the four kids across the hall, the dozen or so in the next hallway. There are about 60 kids at any one time staying at sickkids for treatment, and that is only a fraction of the number of all the cases that come through here each year. There are somewhere between 900-1000 kids diagnosed each year in canada. So yes, it’s important that I share with you what this is like. Because it could have been any of your kids. Because you may come across it again at another time, with another family you may know. And even if you never meet another child with cancer, awareness is important.

 

The canadian cancer society says that “Childhood cancer is relatively uncommon. However, it remains the most common disease-related cause of death – more than asthma, diabetes, cystic fibrosis and AIDS combined. It is second only to injury-related deaths among Canadian children.”

 

Many people have told me how great it is that she is so little that she won’t be able to remember most of this. But I think that sometimes it’s okay to go through something really hard and remember it later on. This is ugly and scary, but it will be a part of her story forever and it will shape who she becomes.

 

It’s hard to know that this bad shit is happening and it’s hard to feel utterly powerless about it. But at the same time, it’s okay for something to be uncomfortable and scary and painful. It is okay to just sit with that and recognize it for what it is. We live in a quick-fix society that wants a solution to most things in a very timely manner so we can do away with any sort of uncomfortable feeling or situation. But there is no magic quick fix to this. How I wish there was. In time, maybe there will be an easier, more surefire solution but not quite yet. The closest I can get to a solution right now is to be here in this room seeing her through her bone marrow transplant. And it’s scary and painful and that’s just what it is and that’s that.

I need people to stop acting like they know that she will be okay. I know it is well meant and people are trying to be comforting, but it’s getting weird hearing people try to comfort me by saying that she is so strong and she will be fine and she will beat this. And I hear this over and over and over, from people face to face and from society at large. The truth is, and everybody should know this by now, she might not be fine. Kids with cancer have better outcomes than they ever have before. Kids who are diagnosed with stage four neuroblastoma have better outcomes than they ever have before. Medical science is moving fast and it’s making big changes, and yet, in all seriousness, the outcomes are still shitty. You can google it if you want, it ain’t pretty. So lets just be totally upfront about this, okay? Nobody can tell me for certain that she will survive. Not even the doctors. Not even the bone marrow specialists. And nobody needs to pretend that this is not the case or try to not remind me about it or protect me from thinking about it, because I know this fact better than anyone. I have known it for seven months. Our family lives with this fact every day. We are well aware, statistically speaking, of how kids with high risk neuroblastoma fare in the long run. And telling me that she’s brave and trying to assure me that she will be fine won’t change it or take it away.

 

For some reason, and I haven’t worked out why yet, but people talk about cancer the same way they talk about mental illness. The narrative in both is that if the person is strong and tries hard enough, they will get through it fine. And it’s just not true – you don’t cure cancer with willpower. Thalia will not cure her cancer by being brave and strong. In fact she has no idea that she has cancer, she doesn’t even know what cancer is, and she is not being brave about this we are making her go through with it. She hates all of this and she doesn’t understand why we can’t go home.

 

The other thing I hate about this common narrative is that it implies that all the people who didn’t survive cancer simply weren’t trying hard enough. That is bullshit. Can we please change the way we talk about cancer so we no longer insult or blame those who were lost to it.

 

The cancer ribbon for pediatric cancer awareness is gold. I often see it being portrayed with glitter. Let’s be very clear here – there is nothing sparkly about this. Cancer is not shimmery or shiny. The only thing that sparkles here is the kids who, simply by luck and no fault of their own, have to bear this.

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her lashes grew back and i can’t get enough of them June 5, 2017

Filed under: Uncategorized — springtwist @ 9:10 pm

its so satisfying to take my girls to the park and especially to watch Thalia romp and climb and play like a regular healthy toddler. trying to find the balance between hospital stuff and just being a child is kinda tough. she knows too much. she knows that an alcohol swab on her arm means a big  needle is coming. she knows how to say ‘stethoscope’ and she knows where to put it. she knows where to find the basket of stickers in the IV room at the clinic, so after they draw her blood, she helps herself to fistfuls of dinosaur stickers. she knows how to carry her own IV lines so that she won’t step on them. she knows if she gets tangled on something to stand still and call for help. “mama, stuck! help help!” she knows where the blood pressure cuff goes and how to pump it up. she knows that when we go into a big room with lots of machines and monitors a big table with a blue sheet and people with masks on its time to scream.

so when we go to the park, i love seeing that she knows how to go down the big slide by herself. she knows that she can go through the red tunnel and stick her face out the hole and yell “mama! peek-boo!’ and she knows just how far away to stand from the spray at the splash pad to not get too wet but still be able to splash her feet. she knows how to say ‘one, two, tree, wee!” and then i push her on the swings. she knows that when the market is on, the lady who sells popsicles is under the yellow umbrella. im trying to be vigilant enough that cancer doesn’t take away her childhood, and that she still has plenty of time to just be two and to do what a two year old should be doing.

 

surgery April 28, 2017

Filed under: Uncategorized — springtwist @ 7:00 pm

Im writing this on april 26th, but the internet is not great so i can’t risk posting it and having the internet eat it just yet.

 

My girl has stitches from ribcage to belly button, in a crescent moon shape. She spent almost her first two years of life without this moon-scar. I took some photos of her the day before surgery so i have some documentation of what her body looked like before it was cut open. The rest of her life she will have her scar. It shows where a surgeon took out her adrenal gland, and another surgeon took out her right ovary. I joked with the surgeon that she will be a little lighter on one side now, and he chuckled and said that she will need to carry all her pocket change on the other side to balance it out. Right now the incision and stitches are covered up by paper medical tape, but it’s translucent and underneath is black dried blood. I am so thankful that they only had to make one incision, they were pretty sure that they would need to make two.

 

Im tired and a bit mixed up today. Got upset for basically no reason, but reigned it in. i think its lack of sleep and shoddy med-taking skills coupled with living in a hospital. My bed for the past 5 nights has been three chairs pushed together in a row with a hospital blanket and a plastic pillow. That’s okay for a night or two, but not much longer. now my body is sore all over. I woke up many times a night to rearrange but nothing was comfortable. I am not taking my pills on my regular schedule right now because i don’t have a regular schedule. We will get to go home soon, which is what is tiding me over. I miss jim.

 

People keep saying how amazing i am, how amazing she is. I don’t think so. I am just doing what a mom needs to do. I see other moms around me doing the same all the time.

 

The other babies in the observation room with me were nice company. The girl next to me is baby M. she was mostly quiet and calm. The boy across from us is baby J and he got upset at the slightest thing. Those two couldnt have been older than four weeks – they were so tiny. The other babies i never got a good look at, but they all had their newborn baby cries still so they were all about the same age. Little girl M had some sort of gastro surgery. At least one baby was there for cardiac surgery. Little boy J had something funky going on with his throat i think, though his issues seemed complicated. Js parents never stay that long, and his mom always cries a little bit when she has to leave him. I don’t know what their life story is or why they cant stay, but its so sad.  
When the parents werent around there were volunteers to come and snuggle the babies. They are so little they dont really care yet who holds them as long as its a nice warm human body. Yesterday evening a big burly guy came up, a volunteer, and i think he was sent in to ask if they needed any help with anything. My nurse said “yes! You can hold M” and he looked in shock. Nurse basically had to hold his hand and got him all set up with baby M and he sat there super awkwardly and wasnt sure what to do. I kept glancing over at him and watched as he gradually relaxed. M stared at him and he settled down with her, stroked her hair and never took his eyes off her little face. I thought he was reading or watching something on his phone but he was just contently taking her all in. he stayed there with her in his arms for a couple hours. She will never remember it, but he will. I can’t imagine leaving your tiny baby behind in the hospital and not being able to stay.

Its pretty late as well, and im sure my own rhythms are truly fucked up because theres just so much artificial light in a hospital. Next to thalias crib was the supply closet so every time somebody went in to get something the light would flood into my corner. In the observation room, theres the constant beeping of all the other monitors. Theres always some baby who is fussing. Baby J cried at the slightest thing so he was crying the most. I want to go back to my own bed.

 

she might die April 18, 2017

Filed under: Uncategorized — springtwist @ 11:09 am

http://www.huffingtonpost.com.au/2017/02/01/neuroblastoma-is-the-rare-and-deadly-childhood-cancer-you-didnt/

http://www.cancer.ca/en/cancer-information/cancer-101/childhood-cancer-statistics/?region=on

http://www.cancerresearchuk.org/health-professional/cancer-statistics/childrens-cancers/survival#heading-Two

https://curesearch.org/5-Year-Survival-Rate

 

im clinging to my anatomy studying. im pouring all my stress and anxiety onto my exam, though i dont need to. ive shifted the focus from her surgery to my exam for the moment. sondra asked how im doing, i said “im… holding together out of willpower”

about 70% of kids survive treatment. about 80% of those who survive treatment are still alive in 5 years.

i cant think about it. i need to turn back to studying.

 

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neuroblastoma February 6, 2017

Filed under: Uncategorized — springtwist @ 9:04 pm

its quiet up here, and a bit lonely. our room is teeny.

luckily we have a window that looks outside this time. theres some giant light thing running up and down the side of one skyscraper, pink. doesn’t seem to have a purpose, but its fun to watch zip up and down.

theres stickers in this room – put here by other kids who have lived up here in the past. its really sweet actually. like little tokens left behind. from kid to kid, a sort of cheerful message. we were here before you. like a guestbook maybe.

i do not like this room. theres no bathroom. in our old room we had a litle mini fridge in the room with us, which was a great blessing. when i am the only one here with her and i cant go down the hallway to find lunch, having a fridge in the room was so good. obviously we can manage fine without the fridge but the bathroom is more annoying. every time i need to pee i need to call a nurse to come sit with thalia. i can manage that too of course. but still – annoying.

everything is frazzled. i feel like i should have my own bravery beads as well. i am being brave too.

my mom was here all day and yes she was helpful for a lot of it, but in the evening she just started going on and on in a one-sided heart-to-heart conversation. “i just know she will be fine. and im not being silly. i just look at her, and i know that she will be fine. i feel it” erm, yes that is actually quite silly. whatever. i guess it depends on what your definition of what’fine’ is. here is a small collection of the side effects we can pray we don’t get in the future: infertility, hearing loss, heart problems, higher chance of getting cancer as an adult, early onset menopause (early being like age 14 if we don’t do anything about it.) this girl will be on hormone treatments just to get through puberty. she will never have a period. she will never conceive naturally. she might come out of this being hard of hearing and needing hearing aids and speech therapy. the cancer might decide to spread to her spine.

jims dad just invited himself over tomorrow. just have the grace to ASK first. we are going through chemo, i have work to do at the same time, i can play hostess all the time. i tried to gently tell him that we already have my aunt and cousins and another friend coming, and he said “great. I’ll be there in the afternoon.” dunce.

 

 

cancer January 13, 2017

Filed under: Uncategorized — springtwist @ 9:24 am

theres too much in my head. i cant pin it all down.

my baby has cancer. fact. we are moving forward every day to make this not a fact any longer.

i thought i had more to say.