World Cancer Day. It’s a day that hits so close to home because of my daughter’s fight with Ewing’s Sarcoma Cancer. They say Childhood Cancer is rare but honestly, it’s not. There are so many children diagnosed every day and at least 7 die from cancer every day....but yet it’s “rare”?! My daughter was only 12 years old when we were told she had cancer. The treatments used has caused her to have pain throughout her entire body, her hip replaced and for her to never to be able to have her own children. Our children deserve better treatments and our children deserve to live longer.
I’m aware ...how about you?
I escaped! Feel absolutely awful, still in lots of pain, dizzy, headache, liver function still abnormal and of course lots of pain in my leg. The journey was me sweating feeling like I’d either pass out or be sick but we made it and I’m HOME 🏡😀🎉💃🤩🦄💕🌈 Jessie has changed so much in such a short time. She’s literally 100% toddler, she literally ran to the front door to greet me with the biggest smile I’ve ever seen closely followed by Seb doing the same almost flooring me with a huge cuddle and “MUMMY!!!!” immediately followed by lets play this game! 🤦🏼♀️😩🤣 So many struggles, frustrations, worries & pains to come for many months still before I’ll be walking /driving & independent but at least I’m back where I belong with this crazy lot! 🤩👨👩👧👦🦁💙💗💙💗🐾##home #homesweethome🏡#homefromhospital#noresthere#cantwaitformyownbed#lifeaftercancer#savemyleg#ewingssarcomasurvivor#recovery#exhausted#surgeryrecovery
6yrs ago today we were celebrating your 7th birthday in the hospital. Because of that life saving surgery (1/6/12) and the following chemo treatments, today you turn 13 (I have a teenager now 😱) and I'm so very grateful! Even though you spent your bday in the hospital recovering, you had the biggest smile that day. You were so happy in spite of the pain and fever you were dealing with. You are such a sweet, caring, smart, talented loving little girl. You learned to play violin and guitar. You even took it upon yourself to learn more Spanish and ASL (American Sign Language), and even started to learn Korean and French, WOW! And your getting so good at it too.🤗My God has blessed you with another year of life by my side. You're the best thing that has happened to me Aneesa! I'm looking forward to seeing the kind of young lady you will turn out to be. "You are the reason I live, you are the reason I am!"
I love you mi 💜❤💛💖!! 😍😙😘😚 *screaming* HAPPY🗣🗣 13TH BIRTHDAY ANEESA!!! #myheartandsoul#shelovesbts#btsarmy#kpop#ihaveateenager#happybirthday#myoneandonly#girlmom#timetostartplanningaquince#timeflies#bestillmyheart#loml#cancersurvivor#ewingssarcomasurvivor#mywarrior#hashtagsfordays
This morning Andie I were making small talk while waiting on the others to wake up. We got on the subject of scars, how many she has and where. She quickly asked me if I have any from when I was a child. I showed her several that I could remember and told her he story that went along with each scar. She said, “Momma I think you might have been a crazy kid.” I had a lot to prove being the only girl among so many boys and I wasn’t going to let being a girl slow me down.
We then started counting my scars from just my cancer journey. Andie quickly decided I am CRAZY AND BRAVE. She then told me how I am her hero. Hero? Those are huge shoes to fill, but I’m honored. I think coming from my 7 year old that is the best compliment I could EVER get. I pray everyday that I will be able to continue to share many more little moments like this with the girls. #mybabies#mygirls#love#hero#cancersucks#scars#scarsarecool#mommasgirl#scarsaretattooswithbetterstories#ewings#ewingssarcoma#ewingssarcomasurvivor
Day #17 of thankful November is a bit broad for me but it’s the most wonderful time of the year, Christmas. I can’t pretend that I like winter - because i don’t at all BUT - I keep my house somewhat decorated year round and it’s that huge to me that i keep a “magic in the merry” sigh in my kitchen right now and any other day you come visit whether it’s in July or December 27th. My grandpa Boyle LOVED Christmas and always made it a huge, grand affair for his family and my dad has followed that path and I take it just as seriously as they do. I’m so lucky to have a job that allows me to get presents for my nearest & dearest, allows me time off around the holidays and people there that love me enough to take my Christmas singing year round. I love the warmth & the glow of the fireplace with a soft throw blanket instead of the best, watching Hallmark movies with my favorite people, the excitement I get when I give someone a gift I know they wanted, the cookie / dessert tins I get to send to loved people who I miss, the photo cards that I take what long making as they get thrown outside lastly, the incredible memories I have of the last 32 Christmases and the fact I get to have this 32nd with my new husband and my family is one of the best feelings in entire world. Message me if you’d like to hear more reasons I love it - LOL, jk! Sorry for the novel.). #thankfulnovember#cancersurvivor#ewingssarcomasurvivor
Day #16. MRI from Monday results. Had to have 7 IV attempts, 6 blown veins - lots of bruises but it could always be worse and in fact it’s been worse, one time I had 8 veins blown, 9 attempts and was sent home. Whatever though, I am thankful for this report, so incredibly thankful that God has allowed me to stay healthy (ish) and start this life journey with Eric and meet my niece and have so many amazing memories with my family & friends I couldn’t event begin to list them. Just very fortunate that my body reacted just how they wanted to the chemo treatments and radiation following. I am one very blessed girl. 2 broken ribs on Monday but still aware that I’m blessed. 💙🎗💙. #ewi#ewingssarcomasurvivor #ewingssarcoma #cancer#cancersurvivor#thankfulnovember#pediatriccancer#bronsonmethodisthospital
*NOT ME* But today on day #14 I am thankful for my hair. I am getting a hair cut tomorrow. I decided very last minute to do something big - the “wife chop” because my ends are just very, very fried and ruining the strands of my fine hair I have left. Thinking of cutting makes my stomach hurt and it takes me back to the last time I got a real cut, the week after my first round of chemotherapy and as my hair was just starting to fall out we decided to cut it and donate it. I was bald within a week and I remember how attached I was to my hair and I still am so it’s a huge thing for me to cut my hair even just an inch so tomorrow will be a big deal for me. Thankful that I have hair, I’m alive to get a hair cut I keep reminding myself and thankful to my friends & family who are praying for my anxiety and even if they think I’m nuts - love me still. Thankful for @lindseyraeduchon for encouragement and @cheekystrut for getting me in with such short notice . #ewi#ewingssarcomaivor #ewingssarcoma #cancer#cancersurvivor#thankfulnovember
Day #10 thankful is a shoutout to pain meds. On days like today when I was throwing up in the morning and dying in pain from that at the office, pain meds and medicine in general were my best friend. So thankful for modern medicine and the pain meds that allow me to function like I’m not a 31 year old with multiple ribs fractured at all times since January 2013. #reallife#thankfulnovember#can#cancerivor #cancer #ewingssarcoma#ewingssarcomasurvivor
Day #6 of being thankful for November and today is not just a one thing but a place and that’s @wal@waltdisneyworld (@waltparks)for being a place for me to go to whether that’s in person or in my head to bring a bit of joy, no matter that trials I’ve faced or am facing. The nurses used to tell me to go to my happy place when before they’d put me under during an allergic reaction to someone else’s blood during a transfusion or when I’d be on IV insert attempt #9 or before counting down on the surgery table with the sweet nurse wiping my silent because there were words, tears. Disney is much more than “princesses” and “fun” to me and I will treasure it, when I’m talking about it, thinking about it, going over memories or even when I’m there, forever, because it’s been a true gift to myself and my family for some of our happiest moments during some amazing times. I will never be embarrassed to be a Disney fan or someone who loves Walt Disney World so much because it means much more to me than people could even imagine. Thank you @waltdisneyworld for being the sparkle in my life so many times. #thankfulnovember#can#cancerivor #cancer #ewingssarcoma#ewingssarcomasurvivor#favoriteplace
A blog post is in progress but it’s hard work with just a phone, no keyboard and no battery 🤦🏼♀️
Obviously you’ll have seen today’s physical developments which have left me totally exhausted! I’ve also had full dressing & bandage changes today 🤕, a much need hair wash 💆🏼😀 & lots of updates from all my different teams of doctors 👨🏼⚕️ 👩🏻⚕️ -the next surgery should be 1st/2nd week of January but I hope this won’t have to change - the most relevant of the updates at the moment, before I can finish my full blog post, is to share that my liver function has worsened and is BAD. The levels that were already abnormal have more than doubled 😤 They believe it’s all drug induced & have been removing various pain killers (ouch 😳) but now it’s got so bad they’ve had to stop all the IV antibiotics (that I really need to zap the infection 🔬) They hope to see an improvement in my bloods tomorrow 🙏🏻💉 and if they do they will then add them back in gradually to try to see what’s causing the liver function impairment. They suspect that it is the one I really need (of course, sod’s law is in force as it’s best in here!) So a balancing act now between drugs needed & not causing liver damage 😩 Never simple & noone’s fault so for now I keep having to show patience as a patient and try not to let it get me down or slow down my physio...no doubt it’ll slow down my escape to home though...
Thank you again to everyone who’s showing support, it’s all very much appreciated 😘
🎃 Happy Halloween! No gory make up or costume needed here, I have the war wounds & the mummy bandages! ... & a hair wash! 👻 #nuffieldorthopaediccentre#ewingssarcoma#bonecancer#lifeaftercancer#cancersurvivor#imstillstanding#stillsmiling#ewingssarcomasurvivor#bonecancersurvivor#savemyleg#avoidamputation#getwalking#lea#learntowalkagain #learntowalk #phy#physiotherapy #physio #nohalloweencostumeneeded#wound#woundedknee#woundcare#neversimple#hairwash#hos#hospitalhair #hospital
October 3rd - 1 year ago today I received my last dose of chemo and beat some cancer booty for the second time. In the past year I moved into a new home and went back to work. I got 4 haircuts and a became a puppy mom. I’ve continued to tell my story and met many more amazing individuals along the way. I’m not 100% where I want to be just yet, and that’s okay. I’m learning to be patient with my recovery. I’m still coping with the things I lost, I’m not my fittest, and I have my bad/sad days. But I wake up every day very blessed and grateful to be here. And I thank ALL OF YOU for your endless love, kindness, and support. It’s been a wild ride, and I look forward to more adventures ahead of me! 💛