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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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Filed under: Uncategorized — springtwist @ 5:41 pm

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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.

 

studying December 13, 2016

Filed under: Uncategorized — springtwist @ 12:03 pm

for better or worse, the whole term will be over tomorrow.  i rocked my first exam and im going to be okay on the anatomy one.

last night i was pretty convinced that i wasn’t going to though. i recognized it as lack of sleep and needing to quit for the night and go to bed. tucked in one last 40 min studying to finish up the chapter all about brains then took thalia to bed and we slept really well. blaze gave me hell this morning, cordelia ended up walking to school by herself. she is awesome – shes not a little kid anymore, shes very quickly becoming her own grown up kind of person. she will be 7 in the spring. SEVEN. the baby we thought about aborting. the marker of our time spent as parents. the amount of years since i graduated from undergrad. blaze meanwhile alternates between being the sweetest, most gentle soul and being posessed by satan. she keeps pretending to be a puppy these days – she thinks shes a long hired poofy puppy. really shes a tenacious terrier of some kind  – loud, all over the place, high energy, stubborn, clinging to things and shaking them until they shred. like my patience. we were very very very late for school. i send coco on ahead so she at least could be on time. ive been studying so much and blaze is telling me its actually too much. shes uses high volume to tell me this.

breezed through parasympathetic/sympathetic nervous systems in one hour this morning, and i have about half an hour left before i need to be home. gotta stay on track for this lat little bit of home stretch. then i will knit all the things and throw myself at christmas prep. hang out with my girls. slather lots of love on blaze to help her get balanced again .