Today the doctor that diagnosed me 2 years ago
@CHEO
told me I’m in…complete remission. She said it perfect. She said I fought a rare disease really well. I cried tears of relief. I worked so hard on this. This was so scary. I’m so proud of the things I did.
#StartWithHillary
🤍
This lucky girl got a bone marrow transplant for
#AplasticAnemia
today in a
#Ukraine
hospital basement by Dr. Oleksandr Lysytsia while Russian rockets fell outside. She’s cured of her rare disorder. I hope she survives this war.
#StartWithHillary
🇺🇦
Guys? I’m in
#remission
. After 2 years battling
#AplasticAnemia
my blood is finally normal. I couldn’t have done it without Mom. This was our fight. Thanks for supporting us. We won’t stop helping through
@CanadasLifeline
.
#StartWithHillary
. I can’t believe it. I’m so happy. 🤍
My blood test came back. I’m so relieved. Hgb 124 Platelets 227 Neutrophils 1.8. I want to thank scientists for the vaccines & my teachers for their support. I feel so lucky & I will keep fighting. 💝
#StartWithHillary
#GiveBlood
#GetSwabbed
#MakeAWish
If you stopped donating blood because you want to feel safe in your mask, CBS has agreed to have a masked blood donation day (all staff and donors) but I have to get at least 100 people in Ottawa. I really want to try.
#StartWithHillary
& are you 1 in 100?
I noticed something. This has been my 1st pain-free week in 2 years. No bloody noses. No foot bandages. No rashes. No headaches. No bone pain. No toothaches. No tummy trouble. No bruises. No transfusions. No medicine.
Nothing. but. fun.
I feel 3 again.
#StartWithHillary
🤍
I FEEL SO ALIVE!!! And I yelled it at the top of my lungs when I left
@CHEOhospital
today. I didn’t need a blood transfusion, & I’m doing well. Thx for thinking of me. This yucky-tasting immunosuppressive medicine works!
#StartWithHillary
& thanks for the top-up
@CanadasLifeline
.
My stomach used to hurt so bad I couldn’t walk. I threw up lots. My throat hurt since I was born. Burned. My leg bones ached daily. Not growing pains. I just realized… I haven’t had any trouble in months. I can’t give up now. I worked too hard for this life.
#StartWithHillary
@AshleyGWinter
I suffered badly. Twice. The only thing that works is This. And it works instantly. Aveeno oatmeal bath. (I’ve been waiting to help someone with this)
I never thought I’d get here. This
#AplasticAnemia
is a beast. Today, I’m Day 22 with no headaches, no infections for the first time, no pain. I have facemasks, a doctor, virtual school, food, friends, family.
#StartWithHillary
& I didn’t give up. I’m thankful for that.
Sorry I missed the stem cell drive today. I’ve been asleep for a couple days now. Mom is pretty scared, but she knows I’m a fighter. Blown away by you 186 people who got swabbed tonight. Not enough room on Twitter for my thx to all.
#StartWithHillary
and be fiercely proud.
I am a 6 yr old from
#Canada
where things have just begun. I have a rare blood disorder called
#AplasticAnemia
. I am immunocompromised & can get serious infections easily. Social distancing has worked for me for the last 10 months NO sweat!
#StartWithHillary
.ca
#HighRiskCovid19
Blood test tomorrow. Nervous about this one. I need my levels to be up. I want to stay safe at home. Please hope my neutrophils reach the normal range for the first time in my life. That’s all I want. Oh, and some platelets & hemoglobin, too.
#StartWithHillary
& think 1.5. 🖤
Is there a HERO award in
#ottawa
? My Nana and Baba deserve it. They drive 2 hours every day to make sure I have everything I need. They sold their boat & trailer so we can have a Christmas & they stay isolated to protect me.
#StartWithHillary
and if you see these two...hug them.
I’m ringing the bell you guys. I can’t hold it in any longer! I feel so lucky. Thank you for helping me get here. Join me LIVE to dedicate our donation to
@CHEO
who saved my life. I can’t believe it’s finally here.
#StartWithHillary
on Thursday. 🔔
I haven’t swam in 4 years. I didn’t finish learning how to swim before I got sick. My nice neighbour DMd me. Yesterday, I swam the entire pool & back… all by myself without help. Then, I jumped off the edge. I did it. I can swim. I can’t believe I did it.
#StartWithHillary
I went from being kicked off the bus my first week of JK to a year sick off school to being way behind in reading. Today, I got my first report card with As & Es on it. I worked hard. I gave it everything I had and… wow. I think I’m smart. Really smart. Huh.
#StartedWithHillary
I feel amazing. I didn’t do anything different today — I just feel lighter. Your kind messages overwhelmed me. I loved it! Thank you so much. I have more good news. Stay with me. It’s gonna get better. I found more light & I’m gonna let it shine.
#StartWithHillary
#Remission
🥰
I got my blood levels last night. I jumped for joy in the snow. I’ve gone from 2 platelets to a record 256K! If you have
#AplasticAnemia
, and you’re looking for
#Hope
, I’m headed to my Nana’s for a sleepover!
#StartWithHillary
& keep working hard for what you want. I will. 🤍
Tomorrow is serious business. I have an early morning virtual app with my Hematology team & I want them to give it to me straight. 1) When can I ring the
#remission
bell in
#MDU
? and 2) How can I thank
@CHEO
for saving my life? Those will be my questions.
#StartWithHillary
The last 3 days
@CHEOhospital
have been unimaginably difficult but hopeful at the same time. Shoutout to my nurses in 4North. After practicing with
@mmschocolate
, my meds are getting easier and I can swallow pills now! I highly recommend it.
#StartWithHillary
and yummy M&Ms.
When I got sick at 5, I had to quit JK. Then I skipped SK cause I was so sick all day. Grade 1 was lonely at home. When
@CarloOCSB
#VirtualSchool
was created, I was so relieved. I’m so lucky to have real teachers & real friends in Grade 3. I loved today.
#StartWithHillary
🖤
Big hospital appointment
@CHEO
today. Might need some blood
@CanadasLifeline
. Thumbs up to all the peeps workin to keep me alive.
#StartWithHillary
and stay positive with me. There is no other way.
Hey
#ottnews
. I'm goin' home tomorrow after 27 days in isolation
@CHEOhospital
. YAHOO! Here's my update: . The fight isn't over. The game has just changed. We'll now have the home advantage.
#StartWithHillary
Two years ago tomorrow,
@SickKidsNews
told me I might die when I asked them to tell it to me straight. I sat in the
@CHEO
boardroom chair. Dad cried. Tomorrow, I get to talk on the radio with
@a_pinsent
, have
@eastsidemarios
, and eat cake in
@MakeAWishEO
trailer. I’m happy.
My pulse has lowered, my pain is less, & I’m managing everything else well. My medicine is working & I didn’t have to go to the ER. I’m pretty grateful. After all this time on Twitter, I’m starting to think thoughts & prayers actually work.
#StartWithHillary
and emojis. 😜🩸
Well, it’s been 3 more months and I still have blood! 🩸 The most I’ve ever had actually! Virtual school is going great and I’m working very hard at staying positive. ♥️ I am never giving up. Life is too good.
#StartWithHillary
& read my update:
I feel GREAT today. No headaches, no tummy ache, no sore throat. I hope the wildfire smoke clears for tomorrow cause I’m turning 10!! I made it to double-digits! The only thing I want tomorrow is a no-exposure day. And blood donors & stem cells. And an iPhone.
#StartWithHillary
I walked into
@ShopprsDrugMart
for some medicine and the girl at the
#cosmetics
counter recognized me and said she got swabbed for me. That was pretty cool. I also got some free
@Clinique
lipstick!
#StartWithHillary
& next time give my mom some waterproof mascara.
Had my virtual check-up today. My blood levels are the same as a normal girl! I honestly can’t believe it. I’m so grateful but also feel guilty. Six of my
#hATG
friends have relapsed with
#COVID19
& are headed to
#BMT
right now. I hope they make it.
#StartWithHillary
#GetSwabbed
Mom is home… after 15 days of doctors, ER rooms & Covid tests. Best of all? She’s all better. We never took it for granted… but we’re even more grateful today. Wait till you see what we do next. We’ll never stop searching for a
#StemCell
match. For everyone.
#StartWithHillary
Last month, my friend told me I couldn’t fly this flag in my room cause I’m not
#2SLGBTQ
+ so I took it down & crumpled it. Today, I put it back up because we talked about
#PrideMonth
in school. If
@TDOttawa
can be brave, I can be too. Thanks. I feel better.
#StartWithHillary
Took a lovely stroll outside today for the first time in 22 days! Nice bumping into you
@AlexMunter_
while checking out the
@CHEOhospital
perimeter. The air tastes different, the leaves are greener, the birds chirp louder.
#StartWithHillary
and put one foot in front of the other.
Look who didn’t need a transfusion today! I made some platelets on my own and feeling
#fabulous
in my
@JoeFresh
gear. I can’t go anywhere to celebrate without any white blood cells so I’m headed home to PARTY with mom..we must be doin’ somethin’ right.
#StartWithHillary
This is the best day of my life.
My wish just came true, on my birthday. I had NO idea. Now I know more why we are asking people to donate money. I’m feeling better already. Please donate to
@MakeAWishEO
. They make kids’ dreams come true.
#StartWithHillary
Day 0. My friend Grant just got a
#BMT
from an unrelated donor to cure his
#AplasticAnemia
. His
#hATG
failed, 1st donor cancelled, 2nd donor had HIV, chemo stopped twice, third time’s a charm. He’s 7. Please pray for him like you did for me. We’re warriors.
#StartWithHillary
My Nana & Baba have stayed in a bubble for me for 4 years. No parties. No restaurants. No trips. No body. I went inside their house last week. I smelled & remembered & cried in every room. I love them for helping me stay alive this long.
#StartWithHillary
#LoveOverFear
. Thanks.
Well, this update about me is worth the wait!!!! I hope it lifts you up, cause I’m happy too. I want to thank Dr. Robert Klaassen
@CHEO
, my “lead ped hem/onc doc” for being so smart about my rare condition
#aplasticanemia
#pnh
.
Read:
#StartWithHillary
Today was better than yesterday, so that’s a good thing. Glad I captured this group of people on my iPhone cause this was a very special moment of laughter and fun that gave me, and my mom, a tremendous boost.
#StartWithHillary
and offer laughter as the best medicine.
I have a big blood test coming up. If my platelets go down, I go to transplant. I asked Mom to pack my bag & tweet about joining
@CanadasLifeline
. My match won’t be there if I don’t ask.
#StartWithHillary
& join for free from home, so I can stay here. 💛
Hey
#ottnews
. Here's the latest
#StartWithHillary
update. Tomorrow is not promised....but it is planned. I will be very well taken care of
@CHEOhospital
and will have my mommy by my side. Send me strength and grit. See you when I'm out.
My infection is FINALLY gone & my platelets held strong. I’m back home after a week away for a house repair & I didn’t get Covid. It snowed today while I was actually standing outside. Could my life get any better?
#StartWithHillary
& I know it will if I keep working at it. 🤍
Today, I find out if I’m on the path towards a bone marrow transplant in the height of a pandemic... or the path to possible life-long remission. What should I do to keep busy?
#Hmmm
Two years ago, I couldn’t get out of bed on Christmas. This year, I was the first one up & it’s cotton candy instead of cyclosporin! What a difference! I’m gonna tell
@a_pinsent
all about it on
@CFRAOttawa
tomorrow morning at 8. He’s been there since Day 1.
#StartWithHillary
Really rough day yesterday and an even worse night. Gettin’ scarier. If your step is heavy today, lighten it by thinking and praying for me please.
#StartWithHillary
and send me your positivity, but keep some for yourself.
I got some pretty awesome plasma today
@CHEOhospital
for a weekend boost and am feeling great!!!! Thank you to the anonymous donor
@CanadasLifeline
. See how this works, people? Have a wonderful weekend and be joyful with me. Get updates at .
Blood test tomorrow. Nervous about this one. I need my levels to be up. I want to stay safe at home. Please hope my neutrophils reach the normal range for the first time in my life. That’s all I want. Oh, and some platelets & hemoglobin, too.
#StartWithHillary
& think 1.5. 🖤
Well, my hemoglobin and platelets stayed in the normal range so we went for a walk on the beach to celebrate. My neutrophils took a dip to 1.5, but I think it’s probably just cause I’m fighting something. Likely my older sister.
#StartWithHillary
❤️
I just finished four weeks of virtual school without taking one medical break. I haven’t been able to get through one full week in two years. Each day is not perfect but I’m feeling a lot better. I even made three new friends today. I hope this is my life.
#StartWithHillary
💜
I had to rush my Dad to the ER last night. He was in distress. I was calm. We are so grateful it’s just a 6mm
#kidneystone
& now he’s quarantining at home. Thank you for taking EXCELLENT care of him
@QCHOttawa
. I’m really proud I was born there.
#StartWithHillary
& call your Dad.
I survived another week. I had a rough headache but I love
@CarloOCSB
school too much to miss it. I heard Bravo
#Bravo
on my school work & I feel a-mazing. Alive. I can’t believe how much I’m learning.
#StartWithHillary
& look at life through blue-coloured monitor glasses. I do.
You know that feeling when you’re not sure if you’re gonna make it through the night cause your hemoglobin is so low? Well, carving these tonight with Alyssa, mom, and dad helped take my mind off it.
#StartWithHillary
& shout yahoo when you wake up in the morning. I will.
I used to live free & in the moment. When I was sick in treatment, I tried to survive each hour. In recovery, I took it day by day. Well, this was another REALLY good week for me. And I’m about to start ANOTHER week tomorrow at Hotel NanaBaba.
#StartWithHillary
.. cause I’m lucky.
I slept in the trailer last night. It was the best sleep I’ve had in my life. No headache, no nosebleeds, no pain — I feel like the luckiest kid to have somewhere to go other than my room.
#TheGreatMakeAWishCampout
will never end for me
@MakeAWishCA
.
#StartWithHillary
#Day3
💙
I went trick-or-treating tonight for the first time in 4 years. It’s the 1st year of my life that I’ve felt truly well enough. I know my mask works & I felt safe. I had the bestest night ever. Watch out cause
#StartWithHillary
escaped the asylum.
#GiveBlood
#HappyHalloween
My friend in Connecticut just got a life-saving bone marrow transplant about an hour ago for
#AplasticAnemia
. His donor is from Norway. We are praying tonight that his mommy stays strong.
#StartWithHillary
and fight the fight, not the fright. We can do this.
Thank you for praying for my Mom. After tests & an ENT visit & some medicine, we hope she will be stable soon. Please pray she did not get
#COVID
. I hope that everyone who needs medicine gets it & it doesn’t make them sick but makes them stronger.
#StartWithHillary
& have hope.
I was really nervous when we pulled into
@CHEO
today that my family was taking me for a surprise blood test, but this is much better. The
#CelebrationBell
looks perfect & I can’t wait for more kids to ring it like I did.
#StartWithHillary
& never give up.
It’s been a year since I rang the
#CelebrationBell
to celebrate my recovery from Very Severe Aplastic Anemia
#VSAA
. Today, I decided that I will now say that I HAD Aplastic Anemia instead of HAVE. I think it’s a big step & will help me move forward more.
#StartWithHillary
I keep having the best day of my life! Today was my first day of Grade 4
@CarloOCSB
— 4th yr of virtual. I love my teachers, my BFF’s in my class, AND I lost my LAST silver tooth. Life is good. Thank you
@OttCatholicSB
for giving me an equal chance at it.
#StartWithHillary
@acdc
I’ve spent years in the strictest isolation to have to head into a public pharmacy, community centre, or busy hospital for my
#CovidVaccine
. There are other ways to help keep me safe & I found one. My sis & I got
#vaxxed
! I feel so alive!
#StartWithHillary
I have a rare condition. Only 38 people in Canada do. It affects my whole family. When Pharmacist Patel called & said he finally got more vaccine, we ran to get our second shots, outside. The sunset was beautiful. I’m so grateful for this
#accommodation
.
#StartWithHillary
💖 ☀️
When my docs said to isolate, Mom left her dream job. Said no to an NHL meet. No to singing on stage with raining confetti. No to school. No to Santa. No Grandma. One thing is for sure...isolation started in that hospital room. I’m grateful to be alive.
#StartWithHillary
So I’m runnin’ a fever. Can’t catch a break. Stayin’ in the hospital for the weekend. This is not unusual for this treatment, it’s just hard. Don’t worry, I will beat it.
#StartWithHillary
and think of me like THIS over the long weekend when I was singing Little Mermaid on stage.
Thank you
#ottnews
and beyond for the thoughts & prayers that have encircled me over the last several days. Here is an update to let you know how I'm doing. Please join
@CanadasLifeline
. Please
#GetSwabbed
. Please think bigger.
#StartWithHillary
I was gonna just stay in bed this morning & sleep off another headache. But my sister has been there for me in the middle of the night. I’m so glad I pushed myself today for her. She graduated Grade 6
@CarloOCSB
.
I am so proud of
#AmazingAlyssa
#ConGRADtulations
#StartWithHillary
Daddy pulled this log and cement blocks out of the river tonight in his nice shoes so we could watch the sunset together. We officially dub thee the
#StartWithHillary
bench at the end of our street. All are welcome...just not when we’re there cause of
#SocialDistancing
.
I got pretty tearey-eyed today.... then I got really hungry... not sure why. But I am sure that I feel boosted today, so it must be working. Thank you
@StLeonardOCSB
for such a considerate and beautiful act of faith and hope.
#StartWithHillary
and bring
@MmeBrooking
with you.
Two years ago today, I was rushed to
@CHEO
needing transfusions from
@LifelineOTT
. Today, I found a four-leaf clover AND I got to talk live on
@CFRAOttawa
. I fight hard and I’m winning.
#StartWithHillary
& be persistent, like me.
When you stare at your own death in the face, it makes you happier afterwards when you get to live.
#IYKYK
. Things are hard right now, but every day that I wake up is the best day ever. I am grateful to still be with my family for another Spring.
#SmartWithHillary
#GiveBlood
pls
My levels went up today, and I’m not talking about hemoglobin & platelets. Thanks to my
#ocsbVirtual
#LLI
literacy program, I jumped 5 whole reading levels and I feel so strong. I did extra and it paid off.
#StartWithHillary
and
#getswabbed
. It pays off too. For kids like me. 😘
My feeling-great streak ended with a
#6
headache & I MAY have barfed in Baba’s car, er hat. I feel in my heart that my
#AplasticAnemia
is not back. I’m not sick. I don’t need a transplant. I just need to start over.
#StartWithHillary
again. And hope for the very best for myself.
The hardest part of my rare life-threatening medical condition that literally robs my physical body of blood... is the mental game. And I’m only 6.
#BellLetsTalk
about kids too,
cause making lemonade is harder than you think.
#StartWithHillary
I haven’t gone sliding in two winters cause of low platelets. I missed a lot, actually. It was tough but I never cried watching my big sister in our backyard. I wanted to stay alive.
Look at me now.
#StartWithHillary
Three years ago today I was rushed to the hospital with an HGB=40. Mom said it was the best
#MothersDay
ever cause we got the chance to save me. Thx to the 3 people who donated blood & platelets that day. I survived!
#StartWithHillary
& anyone can give life to
@CanadasLifeline
♥️
I have a new infection. Might be serious. Got blood work. Doctor tomorrow. It’s hard to deal with but I know that if I talk to the right people, I can get the help that I need. I am strong & have hope for my future.
#StartWithHillary
and please tell this infection NO with me. 🖤
Yesterday was the best day of my life hands down. I can’t believe how nice everyone is. I felt so loved. Just my friends being there for me is all I ever want. My
@MakeAWishCA
already came true. Let’s see how this one turns out.
#StartWithHillary
& I love you all. Thank you!
#10
I have a blood test tomorrow morning so I finally told my friends tonight I have a rare condition & I might die from it. They don’t really care. They just wanna have fun RN. That’s what I want too. I’m glad I’m alive to do it. Thanks
@CanadasLifeline
.
#StartWithHillary
🤞🩸 💖 😜
I never had headaches before my
#IST
treatment. I remember when my brain melted. I’m getting used to this life of medicine & hot cloths & closed blinds. Cause after those dark times, the sun shines on me brightly. I’m alive!!! Thank you ALL for helping me!
#StartWithHillary
💖