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It will be two years in October.
Tomorrow will be Bobby’s second last Lumber Puncture π€π½π€π½
Watching him being put to sleep never gets any easier but knowing we are slowly coming to the end of treatment.
Bobby been unwell the past few days, today he has been throwing up and not eating.
Hopefully nothing to serious π§
Still my little warrior π₯Ή
#chemotherapy #bobby #chemo #cancer #childhoodcancer #childhood #life #warrior #sick #sickchild #drained
Poor Little man has croup π·
Bobby’s last clexane injection!
At the beginning of treatment Bobby got a 12cm blood clot in his brain from the chemotherapy one in five % of a side effect of having chemotherapy and of course Bobby was that person!
We had to injection him twice a day, 12 hours a part of clexane to thin his blood.
Was the hardest, most f@led up thing us as parent had too do! Not only injection him with chemotherapy but this clexane injection was awful.
He is a warrior!
We had did this for over 13 months.
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#warrior #clexanie #hislife #unfair #injection #chemotherapy #sideeffects #childhood #childcancerawareness
My absolute world π
A year apart. π
Life ποΈ
He is just living, we are breathing.
He started day care!
The emotions & excitement
He is climbing that mountain & nearly at the top.
So proud of you Bobby π₯Ήπ₯Ή
β οΈ Trigger warning β οΈ
Every two weeks for 16 months, this is what Bobby has to endure!
4cm needle into his spine to give him chemotherapy.
Plus countless bone marrow biopsies.
Since Bobby is on maintenance and he has T-Cell Leukaemia his protocol is that he should of had radiation to his brain, but they don’t allow kids under 4 to have radiation, so instead Bobby has to have LP’s lumper punctures, every 6 weeks until end of treatment.
It never get any easier watching him being put to sleep and walking away and having your trust of your child’s life in someone else’s hands. π
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#sleep #childcancer #bobby #hospital #childhoodcancer #leukemia #fuckcancer #helphim #puttosleep #surgery #doesntdeservethis #fightcancer #helpcancerpatients #mybaby
Trauma π₯
My life the past two years have been filled with so much heart ache, stress, worry and so much anxiety.
I have never been a person to ever express how hard things were, I always put on a brave face and always said I was ok!
But I wasn’t.
I was in such a bad place.
I had Massive depression, my anxiety was through the roof! Were I had to take valium all the time.
I couldn’t go to the supermarket alone because I was so afraid of having a panic attacks.
I didn’t want to get out of bed most days.
And would always have a nap during the day.
I was just so tired all the time.
I just didn’t care
Colin and I drank to numb the pain.
I ate rubbish, put on so much weight!
Felt so ugly and disgusted in myself but didn’t care.
I would fight with Colin
I would yell and have massive outbursts at the kids, I was so angry! So fucken angry!!!
I felted like I failed my children for never been there enough for them and that they would hate me for always fusing over Bobby more than them.
I tried every day but felt like I failed all the time.
Nothing compares you for having a sick child and especially a child with cancer, watching him nearly die! watching him fight for his life and there is absolutely nothing I could do.
I just gave up, gave up on myself!
I am so grateful for Colin for always standing by my side and always picking up the pieces where I couldn’t. I am not sure where I would be if I didn’t have you!
Today, 11 weeks with no drinking, have lost 20 kilos & back at the gym and starting to feel me again.
Living life with a spring in my step
Happier and content
In love and looking so much to marrying Colin at the end of the year and making happy memories with my kids.
There will always be hurdles!
But i am strong enough to get over them.
It’s ok not to be ok!
I only wish I reached out sooner π
Thank you to all the amazing people that donate, today is @lifebloodau World Donor Blood day!
People like you have saved Bobby with all his life saving transfusions and there have been lots. π©Έ
Become a donor
#donate #worldblooddonorday #support #childcancer #cancerawareness #leukemia
You don’t deserve this π
We have lost count, how many times this has happened to you!
It was every second week, to now every 6 weeks.
Can’t wait until this isn’t your life π₯Ή
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#fighting #cancer #childcancer #doesntdeservethis #mybaby #bobby #fightcancer #warrior #surgery #leukemia #beingputtosleep
Living his best life! ποΈ
Update on our little warrior.
Bobby has been smashing maintenance.
Tomorrow is surgery day, he has a lumbar puncture and chemotherapy into the spine.
Will be the first time without his central line, so this is very daunting!
Watching him being put to sleep never gets easier.
π
.#chemo #chemotherapy #childhoodcancer #surgery #childsurgery #notfair #hosptial #bobby #warrior
A boy and his dogs! π
#sausagedog #dachshund #myfav #bobby #cancer #helpfightcancer #family #boy #dogs #dogstagram
Double chemotherapy day, always makes him sick.
He also isn’t well. π€§
Poor little bubba
Still super cute with his stuffy voice.
.#sick #cold #chemotherapy #chemo #sickchild #poorbubba #strong #bobby #mylove #cuddles #cuddleswithmummy #leukemia #childcancerawareness #strong #snot
πΆπΆπΆπ₯Ήπ₯Ή
#puppy #sausage #love #family
Surgery went well, we are in recovery β€οΈπ©Ή
We got some incredible news today!!!!
Bobby is getting his central line out.
This Thursday!
19 months since his diagnosis.
His central line saved his life but gave him so many problems.
He will be able to go swimming!
We still have until October to be cancer free but have to take all the wins π₯
One step at a time, we keep fighting!
#bobby #wonder #cancer #fighter #centralline #chemosideeffects #childcancer #childcancerawareness #fighter #rareleukemia #leukemia
You never knew how strong you are until being strong is the only choice you have.
One of the side effects of chemotherapy is not eating, Bobby didn’t eat for over a year!
I thought he was going to die from not eating.
Dr’s told us that it’s normal, but having to tube feed your child 247 is not normal.
Healing β€οΈπ©Ή
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. #sideeffects #losinghope #mentalhealthawareness #awareness #cancer #childcancerawareness #childcancer #bobby #weightloss #chemosideeffects #chemotherapy #leukemia
Watching your child deteriorate, losing all his strength from being stuck to a hosptial bed for months and having to learn how to walk again!
This happened twice since Bobby’s diagnosis!
He is a fighter π€Ί
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#didntexpectthat #fighter #cancer #child #childcancer #wheelchair #stoppedwalking #chemosideeffects #chemotherapy #hospital #warroir #strength #didntseethatcoming #bobby #leukemia
This song was playing while we were at the seal show & I got so emotional and couldn’t hold it in, you sometimes are in those moments when it all just hits you.
They were tears of joy & pure happiness
Seeing my children be children
There smiles on there faces
Seeing Bobby being Bobby ¬t a child with cancer.
Him still being here
I know i have been so unlucky with a lot of things in my life, but knowing that this is my family I couldn’t be more lucky.
πππππ¨
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#greatful #motherslove #childhoodcancer #leukemia #bobby #love #happiess #beingafamily #zoo #makingmemories #moments #cancersucks #cancersurvivor #life #unlucky #lucky
It has been 16 months
2 year treatment
Constantly fighting so his cancer won’t win.
The anxiety, the stress, the worry, the let downs.
Bobby‘s cold has gotten worse, he has a bad cough.
We planned to go away today, but unfortunately we can’t go!
All my kids miss out π
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.#letdown #fighter #cancer #fightcancer #childhood #childhoodcancersucks #sick #virus
Our week started so good, Bobby been smashing maintenance. His blood counts have dropped and watching for fevers, he has a cold & was up all night vomiting. Trying to keep him out of hosptial!
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.#chemo #chemosideeffects #bobby #sick #childcancer #fevers #doesntdeservethis #mybaby #keepfighting
Happy Easter π£
This kid still has cancer, YOU wouldn’t believe it. Has chemotherapy every day!
But we are living the best life we can.
We are just living π₯Ή
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.#chemo #chemotherapy #cancer #childcancer #child #strong #bobby #living
6 days after your second birthday our world was taken away from us.
You wouldn’t believe you were so sick, looking back at those photos, days away from losing you. You have been through absolute hell, I wish I could have taken all that pain away from you Bobby. π
You are a warrior & a fighter, I can’t wait for you to keep fighting to be cancer free
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#cancer #childhoodcancer #leukemia #tcelllymphoma #rarecancer #chemotherapy #fighter #love #hell #beenthroughhell #quote #keepfighting #bobby #two #hosptial #surgery #childcancerawareness #noone
Our daily 6 MP chemotherapy, Bobby has chemotherapy every day plus Methotrexate once a week until October.
Before we had to administer through his NG tube but look how far he has come.
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#chemotherapy #cancer #childhoodtrauma #childcancer #childcancerawareness #bobby #bobbyray #tobecancerfree #fighting #mybaby #warrior #takingmedicine
11 weeks in a wheelchair & Bobby learning to walk again! Nothing is holding this boy back.
Kicking cancers ass ποΈ
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#cancer #childhoodcancer #leukemiaawareness #leukemia #bobby #bobbyray #rayofsunshine #warrior #fighter #youarethesun #walking #wheelchair #learning #lovehim #livinglife
If Bobby was over 4 years old, he would need radiation so unfortunately he has to have Lumber punctures every 6 weeks and chemotherapy into the spine.
Today we have been up quite early for him to eat before he has to fast for his surgery today.
Never gets any easier watching him being put to sleep on an operating table.
The past few days he hasn’t been himself, been quite off his food.
Apart from that he has been rocking maintenance and enjoying a little more freedom.
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.#cancer #pathology #blood #bloodbank #leukemia #chidlhoodcancer #fighting #warrior #star #bobbyray #bobby #surgery #lumberpuncture #fasting
Seeing life through our colourful glasses and we are so happy about it π»πβοΈπ
Fractures have healed.
No more Boot!
Longest 9 weeks ever.
Learning how to walk again and make him the strongest little warrior ever.
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.#warrior #brokenleg #cancer #babycancer #fighter #leukemia
A year apart to date.
Looking back breaks my heart π
I don’t feel like it was real, I pretended that everything was ok and I was ok.
I distracted myself and was running on auto pilots, I haven’t looked after myself at all and it shows.
All the emotions of what I wasn’t feeling then I am feeling today.
I am angry, I missed out on so much with my kids because Bobby has taken so much of my time, I haven’t been a great partner, I have been so upset & angry lately. I don’t even know who I am. This isn’t me!
This journey has changed me.
Would change anyone
It’s what happens in between
Taking the time to heal
Take each day as they come!
It’s ok to not be ok
Bobby hasn’t meet counts for the past two week and has been on hold from treatment!
We are in hosptial today for our usual bloods and check up, we think he is coming down with a virus but he is always the strongest little man, no matter what he has a smile on his face.
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#cancer #childhoodtrauma #childcancer #awareness #itsoknottobeok #bobby
I have been so quiet on here.
Because really I don’t even know what to say anymore.
I have been judged about nearly everything I have done in the past year by people that I actually thought were my family.
πππ
I love you β€οΈ
Bobby has officially hit MAINTENANCE!!!!
15 months of high risk treatment, he has fought hard, been extremely sick, 12cm blood clot in the brain, clexane injections twice daily, chemo injections, lots of oral medicine, steroids, had to learn to walk twice, 52 transfusions, over 40 surgery’s, x rays, CT scans, MRI scans, multiple ECG, broken leg, temperatures, sepsis, antibiotics, fungal infection weeks and weeks of Hosptial’s stays, been away from his family & we have nearly lost him 3 times.
Maintenance means oral chemotherapy once daily and one weekly for another 8 months so he can be cancer free.
We are extremely proud and over the moon that he has gotten this far.
Still a long road but we are on the better side βοΈ.
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.#soproud #cancerchildhoodcancer #chemotherapy #hosptial #cancerfree #bobby #bobbyray #warrior #madeitthisfar
Everything we needed & more π.
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.#firstholiday #family #beach #childcancer #bobbyray #loving #camping #sun #everything
Car is packed, kids are waiting and guess where we are?
You can’t plan, you can’t work, you can’t look forward to something because cancer doesn’t give memories.
Bobby counts have dropped and needed a Blood transfusion, hopefully we can go away later. π€π½
We will have to keep a close eye on him as his neutrophils are dropping.
We just want to give the big kids a holiday. π
Back home where he belongs! π€
He counts finally came up and we were allowed to leave.
Was the longest two weeks, so glad he is safe and well enough to be home with us all.
Of course we had to get chips on the way home!
Big kids are over the moon π
Back Tuesday but at least we get a few days at home x
Your a warrior Bobby βοΈ
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.#home #bobbyray #cancerchild #cancersucks #missinghome #backhome
We want to go home!! π
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#overit #bobbyray #childcancer #cancer #fights #sickofbeingsick #chemotherapy #bobbyray
Update
Day 9
9 days of fevers
My gut is telling me that we are missing something. Bobby has always seemed well but inside it’s a different story!
His counts are so low, today they are going to give him some medicine to boost his immune system.
He has a little rash we have to keep an eye on.
He needs a blood & platelet transfusion today also!
We have done the x ray and waiting to do the ultrasound and the CT scan.
Hopefully this will give us answers π€π½
Colin has been unwell, so he has had to stay away.
So it’s just been me and my little man
Get better Bobby
We all need to be back together π€
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:#keepfighting #bobbyray #cancerchild #childhoodcancer
Bobby keeps spiking fevers!
Not sure why but the doctor are changing his antibiotics obviously the first two aren’t fighting the infection.
Let’s hope this works and we can bring him home π€
He has been up and down! It’s hard to rest while in hosptial, you’re constantly woken up.
We are finally on the oncology ward after 7 days of been moved around the hosptial.
Keep shining Bobby β¨
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.#childcancer #fighting #antibiotics #hosptial #bobbyray
I love you π₯Ήπ₯Ήπ₯Ήππππ
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#tocutenottoshare #bobbyray #iloveyou #kisses
Update….
Bobby doing ok, He spiked another fever this morning so more blood cultures were taken to make sure they are treating the right infections.
He had a platelet transfusion as his platelets dropped to 5 so quickly!
He had his last steroid medicine today!!!
He has been a steroid crazy child, screaming for food and been so sad, he is so swollen.
Hopefully will be out of his system in a week and he may start to feel a little better. He is so swollen
We have changed rooms 3 times and still haven’t stayed on the oncology ward, so frustrating!
Colin & I are taking turns on staying the night, both extremely tired and grateful for all you guys constantly reaching out and checking in. πππ
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.#childcancer #bobby #bobbyray #hosptial #hosptiallife #cancer #chemotherapy #child #sick
Update : Our little Bobby isn’t doing well, he has a blood infection waiting to hear from the doctors to know exactly what he has and make sure he is getting the right antibiotics & he has lipids which is a side effect from the chemotherapy he had last week! Worst case they will have to do a blood transfusion and remove Bobby blood and transfuse more blood to get rid of the fatty blood.
He is on two different antibiotics and just sleeping lots.
15 months of this and it doesn’t get any easier seeing your child fighting for his life. π
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.#cancer #childhoodcancerawareness #childcancer #bobby #bobbyray #fighting #warrior #sad #hatethis #infection #bloodyinfection
π
We have had a very hard past few weeks with Bobby being very sick after his this most recent block of chemotherapy & steroids. Add in Christmas and school holidays, we are truly exhausted. We’re also feeling some heavy emotions and a lack of understanding about some of our choices.
We started Bobby Ray as a way to support our family and be able to be there for Bobby when he needs us the most. It is not by any means a get rich quick scheme. It is a passion project to honour our boy and his incredible fight, while hopefully making enough money to get us by each week.
I have found comfort in this amazing community we have built through social media. I use it as a way to express my emotions about the hardest time in our life, and to share our beautiful Bobby with you all. There is nothing more to it.
I shouldn’t have to justify any of this but here I am. Living with the constant fear that your precious child can be taken from you at any moment is the worst kind of torture. Every single day.
Please remember to be kind. You never know how someone’s day is going or what they’re really going through unless you live it.
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#bekind #bobbyray
We got Bobby’s BMA results of his last bone marrow & unfortunately our little man still has leukaemia cells π₯²
I have mentioned before that they test for two markers and one of Bobby’s markers are negative but still has percentage result on the other one.
We are devastated
The doctors have said they will retest after this block and see where to go from there!
He has been fighting for 14 months and still not cancer free ππ
It’s the never ending roller coaster of this f@cken disease & all I want to see is the light at the end of the tunnel & having Bobby with us forever.
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.#chemo #cancerfree #bobby #bobbyray #stillfighting
This has been the worst week possible π
Bobby is having all kind of side effects from the chemotherapy
He is on steroids 3 times a day
He is miserable, he is sad π
Just wants to sleep & have lots of cuddles
He is in lot of pain
Uncomfortable with the leg
Steroid rage is kicking in
Today we are doing another day of chemo so this week is going to be quite the same!
14 months of this & it doesn’t get any easier π
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.#cancer #cancerchild #fighting #bobby #bobbyray #chemotherapy #chemo #hosptial #child #sydneychildrenshospitalfoundation
It never gets any easier π
His leg is broken in two places π
He hasn’t said a word all day!
Had surgery and cried the whole time
Been sick in the car on the way home
Has not eaten
looks so sad
This is just so unfair
Glad you were with him all day Colin ♥οΈ
He will deteriorate with not be able to walk
& we have a whole day of chemotherapy tomorrow!
Fu@k you Cancer, how quickly everything can change π₯Ήπ₯Ή
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.#fuckcancer #broken #brokenleg #chemotherapy #cant #heartbroken #unfair #bobby #bobbyray
Day Two
Surgery day
Lumper puncture, chemotherapy into the spine & bone marrow!
Fasting since 7am π
Steroids start
Nose tube back in
Poor little man had a fall this morning, he is about to have a X-Ray on his leg
π€π½ nothing is broken otherwise that will be the icing on the bloody cake.
Pray for our little Ray today π
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#chemo #chemotherapy #bobby #bobbyray #surgery #broken
Back to reality
We are still fighting
Our son still has cancer
Bobby has been incredible the past few weeks, been amazing to witness.
But today is the day!
BLOCK 3
Back at it… let’s KILL this f@cken CANCER
And start living Bobby
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#bobby #bobbyray #fuckcancer #cancer #fights #chemotherapy #chemo #childhoodcancerawareness #warrior
Enjoying every moment with you π
You never know when it can all be taken away from us!
You deserve to be smiling every single day
Love you Bobby Ray β€οΈ
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.#loveyou #bobbyray
8 months of planning & the day is finally here!
7pm tonight we will be LAUNCHING π
The love for Bobby & his favourite fedora hat for the world to love β€οΈ
Taking a bad situation and turning into something positive
I am so excited for everyone to love their fedora hats as much as Bobby does.
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.#fedora #hats #launchingsoonπ #launch #soon #business #cancer #supporting #keepgoing #bags #bobbyray #love #hosptial
π
how did I get so lucky π₯Ή
We are on a month of oral chemotherapy at the moment
Bobby is doing so well, he is getting stronger
It’s been so fun he is getting his little personality back.
We have missed him
He starts the next block after this month, which is the awful steroids and then back to high risk block which last time he ended up in hosptial with sepsis.
Just enjoying the little things π
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#chemotherapy #warrior #hosptial #leukemia #strong #fun #bobbyray
Not sure if this is GOOD or BAD!
A year of Monday blood tests & unfortunately this is his life, he is so used to it!
But he shouldn’t be used to it.
Normally he sits on my lap and I cuddle him but today he jumped up and put his arm out.
Made me cry π’
He is incredible brave
I am incredible grateful he is still with us
If this is the things we need to do then we have to do just do them.
My little warrior
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#bobbyray #warrior #bloods #test #cancer #chemotherapy
Sharing our story and the importance of donating blood which has helped so many little kids, especially our little Bobby Ray π.
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#donate #blood #blooddonation #cancer #leukemia #supporting #help #childhoodcancer
I hate surgery days, never gets easier!
Mind and body exhausting, watching your child go through so many different emotions and doesn’t even understand why this is happening to him.
I wish that Bobby could understand a little More, then it wouldn’t feel so bad.
I try and explain it to him, that as soon as you sleep at hosptial you can eat.
Today he waited 7 hours from 7am fasting until his surgery at 2pm.
Could you image keeping your 2 or 3 year old from eating food and drinking ??
It’s unfair π
Bobby is back on the chemo injections and oral chemo until next week, his haemoglobin is 74 which he will need a transfusion at 70, will need to keep an eye on him.
It’s the end of the day and I am grateful that he is home and in bed safe asleep with a full tummy.
Tomorrow is another day of problems
Proud of him π
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.#bobbyray #lovehim #proud #surgery #chemotherapy #cancer #fuckcancer #nochilddeserves #needsmore
Been up since the crack of dawn,
fasting Bobby for his surgery today.
It’s such a challenging day trying to explain to a 3 year old why he can’t eat or drink.
Bobby’s count’s have come up so we are continuing with surgery and treatment this week.
Surgery is a LP lumbar puncture, bone marrow and chemo into the spine and then tomorrow we have a full day of chemotherapy and then the week of chemotherapy injections which Colin & i do at home.
Colin does surgery day’s because I am to traumatised and can’t stand seeing Bobby been put to sleep π
Best daddy
Keep fighting my little Ray of sunshine βοΈ
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.#fuckcancer #keepfighting #chemotherapy #surgeon #surgery #bobbyray #helpfight
Today marks Bobby’s one year of treatment.
This day last year our families lives were shattered our little Boy was so sick that we didn’t know if he was going to survive the weekend.
Today brings so much emotions, happiness that he has fought so hard to still be here a year later, but so much sadness of how bad this year was and how much was taken from us.
We have spent over 5 months in hosptial
One year down and one more year to go!!
Strongest little human Bobby Ray βοΈ
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.#fightingcancer #cancer #anniversary #bobbyray #findacure
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We are home!
Finally….
This past month we have spent so much time
In hosptial, Bobby has been struggling, having a hard time with every side effect from the chemotherapy and unfortunately has had two different blood infections plus rhino virus.
The first time was the scariest moment seeing your child be so sick that he was unresponsive and all the nurses and doctors doing everything they can to stable him.
But being Bobby he is a fighter
And showed all of us how strong he is πͺπ½
We are on another weeks break as his little body needs a break, we need his levels to be a safe levels to start treatment again.
Bring them back up to mash them again :( unfortunately it’s the process.
This round of chemo has made Bobby lose his hair again.
We spent Bobby’s 3rd birthday plus Charlies birthday also in hosptial but we’re so lucky that we were able to have gate leave for a few hours to celebrate Bobby’s special day! There hasn’t been much celebrating in the past year and it was extremely special.
We can not thank the amazing people that donated there time to make this happen for our family and special Bobby. We are so grateful π₯Ή
We are going to enjoy some quality time at home π
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.#chemotherapy #hosptial #bobbyray #birthday #warrior
Three times around the sun βοΈ
Happiest of birthdays to the strongest warrior Bobby Ray ππ
We had the most incredible day ever celebrating you!
The past year has been the hardest year of your life and you are continuing to smile.
You deserve so much more then what life has thrown at you.
But mummy and daddy couldn’t be more proud of you fighting so hard and actually been here to celebrate your day!
You are loved by so many people Bobby, you inspire so many people every day ππππ.
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#happybirthday #cancer #bobbyray
I imagine hearing the words “your child has cancer. Imaging see your child fighting for their life. Imagine seeing your child on life support. imagine your child suffering and there is nothing you can do about it. Imagine feeling so helpless. Imagine holding down your child during painful procedure’s and allowing others to course your child pain. Imagining having no choice because you want your child to live a long healthy life. Imagine the immense heartbreak. Imagine cancer affects your entire family and changes your life forever. Imagine crying your eyes out every day and pretending your ok in front of Other. Imagine questions life itself and all the decisions you have made. Imagine feeling you have failed your child.
Sadly. This isn’t a story this is our life’s it is a real, horrible nightmare which we live every single day.
Cancer for Bobby isn’t him sitting in a hospital bed smiling with his bald head, it’s intense pain, heart break and suffering.
What it has done to our family is hurt us immensely.
I F&cken hate cancer and I hate what it has done to me and my family ππ
In 8 days will be our one year of this nightmare.
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.#fuckcancer #child #chemotherapy #life #unfair #bobbyray #deservesmore #anniversary #heartbroken
What a way to start the week off.
This is our life!
Missing special events.
It’s Charlie’s birthday today and look where we are! π
Bobby spiked a fever and we brought him in to emergency last night and we are still here waiting for a bed up on the ward.
Scary thing we have been amongst all the sick kids for 6 hours,
The child next to us has croup
Finally the isolation room was free in emergency, we are still here 13 hours later. There are no beds available
I have slept a few hours on a chair
We are both very tired π΄
Bobby seems to be ok, let’s hope nothing bad will be found.
It’s his birthday this Saturday π€π½π€π½π€π½
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.#fuckcancer #breaks #events #birthdays #sickness #hosptial #bobbyray #warrior
11 times around the sun βοΈ
Happy birthday to the most caring, beautiful, smart little girl.
Thank you for being you Charlie bear
You are the most incredible big sister
I won the jackpot with you and I am the luckiest mum in the entire world.
π
Bobby Ray of sunshine βοΈ
WE ARE HOME!!!!
12 days in hospital.
You are the strongest little man, I can’t believe how sick you actually were! This is the third time we nearly lost Bobby. The first 3 days were touch and go & the doctors were deciding if he needed to go into ICU. But you surprised us all how strong you are.
Cookie so happy to have you home!
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.#home #chemo #bobbyray #warrior #home
10 months of clexane injections,
12 hours apart
Twice a day
Morning and night
This poor little man has to endure Daddy and Mummy one of us holding him down while screaming and the other one injecting him into his little thighs
I hate it, I f%cken hate it
All the side effects from the chemo π
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.#clexane #chemo #sorry #cancer
What a scary week it has been, it’s doesn’t get any easier seeing your child so sick.
Bobby is still on 4 hourly antibiotics and tube feeds because he still isn’t eating.
His white blood cells have dropped completely.
we will be here for a while.
I have asked the team to stop treatment and help us get out next Saturday as my sister is getting married π€π½ Hopefully we will be able to be there π
Thank you to everyone that has helped us out the past week, we would be lost without you!
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.#bobbyray #warrior #cancermum #leukemia #wedding #chemotherapy #cancer #fighting #love
Bobby is going for a emergency scan this morning to put die into his chest as yesterday his central line stopped working, the doctors think it has moved. Which could mean that it could be closer to his heart or pressing onto something it shouldn’t be.
The central line is normal placed in a vein near his heart.
If it has been moved he may have to go for surgery.
He still isn’t doing great, his platelets have dropped and he still isn’t eating or drinking even though he is on steroids.
Poor Bubba can’t catch a break π
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.#keeppraying #bobbyray #cancer #overit
Updated
The last few days has been filled with anxiety & worry, when we brought Bobby in to emergency we knew there was something really wrong, he was unresponsive & shaking & vomiting.
Bobby has sepsis E.Coli, blood infection plus rhino virus.
Absolutely heart breaking π
The doctors are doing everything they can to keep Bobby out of ICU. π’
You don’t deserve this Bobby
Keep fighting π€Ί
Keep Bobby in your thoughts
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#fuckcancer #cancer #help #fight #warrior #childhoodcancerawareness #bobbyray #hosptial #spesis
You don’t deserve this!
How quickly everything can turn.
Bobby was throwing up last night and had a temp so immediately we brought him up to emergency, he was unresponsive, out of it, his blood pressure dropped
It has been a very scary night.
He still has a temperature
He is stable and been giving antibiotics and test to be done to see what is happening.
Poor little man has been hit really hard ππ
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#fuckcancer #childhoodcancer #bobbyray #fighting #sick #chemotherapy #leukemia
You are a warrior!
warriors don’t give up, they don’t back down,
they grab there swords and shields and fight.
Keeping fighting Bobby πππ
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.#bobbyray #fightingcancer #leukemia #awareness #warrior #fight #cancer #childhoodcancer
Bobby has surgery this morning.
Lumber puncture, chemo into the spine and a bone marrow to check to see how treatment is going.
Tomorrow we start our high risk 3 month block again with steroids for the month, he will be angry and swell up again and he will become really weak.
I f@cken hate STEROIDS!!
I hate cancer
It will be nearly a year soon of Bobby fighting and we still have such a long way to go!
Keep fighting Bobby
Keep shinning Bobby
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.#bobbyray #keepfighting #cancer #childhoodcancer #leukemia #strong #hatecancer #sad #warrior #hospital #princeofwales #bonemarrow #surgery
Happy birthday to my fiancé
To the best dad and partner
We would not of gotten this far, without you!
I am the luckiest human to call you mine
Happy birthday babe π€π€π€π€ @c.w.h.79
The blaming game
What did I do so wrong in my life π
I am struggling, I have never suffered from anxiety before. It is a daily recurance
I fear the worst
I am scared
I think about it all the time
I never felt like this at the beginning of Bobby diagnosis but it’s crippling me
I am so scared that something is going to happen and we are going to lose him
The cancer will win
The feeling of not knowing that you have no control over this!
It’s not getting easier
Putting on a brave face
It’s just not Bobby having cancer it’s everything in my life at the moment.
It’s all starting to pile up
Being a blended family is so hard
Why can’t we just catch a break ππ
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.#not #cancer #childhoodcancer #breaking #neverending #bobbyray #wantitalltobeover
That smile π
Bobby is doing so well at the moment, taken each day as they come!
Bobby is still having chemo every day and one extra chemo once a week.
We are counting down the days until we are on the next protocol which includes another month of steroids and other chemotherapy!
That month before when Bobby was on steroids for that month it was so brutal π Took it’s toll on him and his little Body.
Keep fighting Bobby Ray βοΈ
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#chemo #fighting #childhoodtrauma #childhoodcancer #bobbyray
Back at it!
His count have come back up!
I still don’t believe we have been living this life, i still can’t get my head around the fact that my son has cancer & he can be taken away from us at any moment.
I been looking back at photos & videos and i feel like we have been living in a blur, auto pilot. Just trying to survive, trying to be normal, trying to get by.
Fu&k you cancer for taking our life away
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.#cancer #childhoodcancer #bobbyray #help #childsickness #living #break #chemotherapy #surviving
Sick and tired of this shit!
No one will understand
I am tired of seeing you go through this Bobby
You deserve so much more π
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#heartbroken #chemo #cancer #brokenmum #doesntdeserve #childhoodcancer
Cancer has taken so much from us but having a little glimpse of how Bobby should be has been the best feeling!
Keep fighting my little man
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. #keepfighting #cancer #childhoodcancer #happy #bobbyray
You have made us so proud! You have shown me so much strength, you are so brave! Bobby has been Bobby! Happy & playing. Been such a fantastic week βοΈ take each day as they come.
πππππ
A month delay and today we have had the all clear to start treatment again. π
His levels have finally come up!
Today Bobby is going in for his LP surgery!
The past few weeks Bobby has been so good, happy and wild!
Not looking forward to him getting sick from the chemo again.
Bobby Ray you have got this!
Let’s kick this CANCERS ass to the kerb!!
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.#cancer #childcancer #kickcancer #cancerawareness #leukemia #bobbyray #randwickhosptial
When we give blood, we're part of a bigger team.
We have come together with Australian Red Cross Lifeblood and started a team for Bobby Ray as a way for our friends, family and anyone sharing in Bobby’s fight against T-Cell Lymphoblastic leukaemia - Blood cancer π to join our team and give blood. Nothing beats the feeling of saving lives together. What are the benefits? Aside from genuinely saving lives, Lifeblood Teams is about friendship and community. It’s about lifting spirits and making you proud to be part of something bigger than yourself.
How do you join our team for Bobby?
Log in to your account, or register if you don’t already have one. You don’t need to be a donor to register.
Join Bobby Ray by heading to the 'Teams’ tab in the top right and clicking ‘My Teams’
Search Bobby Ray and submit. Every donation from here on will count towards our team tally for Bobby Ray β€ @lifebloodau
Bobby Ray βοΈ still smiling βΊοΈ
π
This is our life
Playing in hospital hallways.
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#fuckcancer #takenallaway #bobbyray #leukemiaawareness #leukemia #cancer #childcancer #hatethis #brave #takeitallaway #needabreak #helpbobby @sydneykids_
He can’t catch a break!
Been told his blood levels have dropped again from just that week of chemotherapy, so we are on another hold.
He had oral chemotherapy every day & we were injecting him chemotherapy once a day for four days & his intrathecal chemotherapy once a week in hospital, plus his LP which is chemotherapy into the spine.
We can’t seem to finish this round, couldn’t even finish a weeks worth of chemo. He can’t even finish a month block of chemotherapy, His poor little body just isn’t coping.
We are dammed if we do & we are dammed if we don’t.
πππ
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. #chemotherapy #bobbyray #break #heal #sick #cancerchild #help #leukemia #fuckcancer #warrior
He will look back & know that you never stopped holding his hand.
You have always been the most incredible dad, not just to your own kids but to mine as well.
We are very lucky to have you & I know I never say it enough but thank you.
Thank you for always support me.
Always having my back.
Being there for me through this,
Me being the one breaking down & you holding it all together for all of us.
Being so brave
Being so caring
I know I wouldn’t of survived this long if you weren’t here holding my hand too.
I love you.
I can’t wait to marry you πππ
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.#bestdad #chemodad #survivor #survingcancer #love #bobbyray #cancer #chemotherapy
8 months apart
First photo is a child that is just a child, living his best life, being free & wild.
The second photo is a child being hit with life or death, to be wild & free.
Bobby Ray Keep shining βοΈ
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.#cancer #fuckyoucancer #fuckmylife #bobbyray #takenitallaway
Yesterday afternoon we were out for lunch with some friends & Bobby went all limb on me & i screamed for Colin that there was something wrong.
Colin ran & picked Bobby up & he threw up & he threw up his NG tube, I had to pull it out.
We rushed him up to emergency, after a few tests he needs blood transfusion & platelets, he had his blood transfusion late last night. But spiked a fever which is a automatic 48 hour stay in hospital with antibiotics!
Test have shown that Bobby’s liver is still struggling & his neutrophils are still quite low.
Going ahead with treatment this week isn’t a option so we are on hold again for another week, our last treatment was 3 weeks ago!
Give his little body a break.
I have been struggling the past few days, I am just so f&cken over it!!
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. #help #bobbyray #cancer #chemotherapy #struggling #overit #needabreak #warrior #steriods
That face, look at that face!
You Bobby are extraordinary. βΊοΈ
Today we woke at 5.30am so you could eat, as today is your surgery & Bobby has had to fast from 7am, fasting is hard enough but with steroids omg!!
We were waiting for Bobby to go under then the doctors have told us that his blood results have come back that his liver is at risk, his liver can’t handle another does of chemotherapy at the moment and he has fatty blood cells from one of the chemotherapy that he had last week, plus from the steroids.
All f&cken side effects!!
So another week waiting and hoping!
The past month has been extremely hard on Bobby & all of us, steroids have completely wiped him!
He is weak, your body is weak.
He struggle to walk, he wake me throughout the night as he can’t sleep or even roll over!
We are all tired, we have two days left of steroids for the month! F%ck YES!!
A month break from them and then back on them for another month! ππ
Keep smashing it Bobbyray
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.#liver #chemotherapy #childcancer #warrior #bobbyray #smile #randwickhospital #sydneychildrenshospital
9 times around the sun βοΈ
Happiest of birthdays to my first boy my Eddie spaghetti, you entered the world loud & fast just who you are know, weighing 4.9kilos you were the size of a toddler already
You were my easiest births of them all.
You have turned into a beautiful handsome caring little man & i couldn’t be more proud of you.
Keep making everyone smile Eddie π€π€
I don’t have the strength this week
I am emotional exhausted
It has been the most hardest few weeks with Bobby being on steroids.
Him constantly wanting food & him not knowing what he wants, his anger and frustration and sadness.
He doesn’t want to do anything but lay on the lounge.
He is getting weaker each day.
My kids are struggling, It’s all starting to take a affect on them.
They are breaking down they aren’t coping.
Colin & i have been arguing, we are exhausted.
I am so tired of been strong!
I am so fu@ken tired.
I am so over it all.
We received Bobby last bone marrow news last week & i didn’t want to share it.
He needed to meet two markers both negative both under 5% & one of the markers were minus which is fantastic but the other one still had a percentage unfortunately so Bobby still has leukaemia cells but they are under 5% but still has leukaemia.
They will do another Bone marrow biopsy after this 3 month block of chemo and steroids and see where he stands.
He needs to keep fighting
I can see how much the past 7 months has taken out of us as a family & especially our little Bobby, his poor body can’t cope.
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.#fuckcancer #bobbyray #tired #cancer #chemo #chemotherapy #leukemia #childcancer #exhausted #life #hosptial #childrencantfightcanceralone #randwickchildrenshospital
It’s never ending
I feel like I am someone that constantly gets hit down, keeps getting the shit end of the stick.
I am tired of being giving this hand
Our Charlie bear has ADHA & learning difficulties & a tick & she has struggled with her learning & her confidence & slowly after time she has built up her confidence but she still struggling a lot with her learning, recently we got her tested again & found out it is worse then we ever thought, she has been diagnosed with serve learning difficulties & language disorder.
Pretty much she will struggle no matter what help she will receive, she will never be able to learn like anyone her age.
Charlie was born to be the bigger sister, she was given this role because she is caring, gentle, confident, smart, loving little girl. Her siblings are so lucky to follow her footsteps
She made me a mummy
She makes me stronger every day
She is my best friend
She deserves the world
And I will give her the world π
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.#siblings #charliebear #bigsister #deservestheworld #lucky #learning #learningdifficulties #adhd
Back at it!!
We had the best week, the best I have seen Bobby in the past 6 months! He has been so happy π we have all been so happy! Having him home.
Having Mother’s Day at home & been proposed too has really lifted my spirits going into the next block!
Today Bobby has surgery - I have really lost count I reckon over 20!
Today’s bone marrow will determine how treatment is going! π€π½π€π½
We have a month of steroids and back to chemotherapy! Bobby is going to be wild, angry, aggressive, short fussed and just not himself. He may eat more which is great since he only picks at the moment.
He is mostly NG fed!
Going to be a hard month but we have this.
Thank you to everyone that constantly asks if we are ok, donated, drops food & snacks off & just have been there for us through this time.
We really couldn’t have gotten here without you π€β€οΈ
You got this Bobby Ray βοΈ Keep shinning
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.#chemotherapy #bobbyray #leukemia #youcandoit #surgery #bonemarrow #support #hospital #living #childcancer #awareness
Bobby Ray
Our ray of sunshine βοΈ
Dedication to you & so many others that are going through life changing experiences.
π§‘join us- sign up via the link in the bio to be notifed as soon as we’re ready to launch π
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.#newstory #bobbyray #winning #cancer #leukemia #hats #fashion
The easiest YES!!! I have ever said.
Best Mother’s Day ever. πβ€οΈ
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@nataliemariejewellery #myforeverlove #engaged #love
I reckon we have spent more time in here then we have been home in the past 5 months.
We rushed Bobby in early Friday evening.
Bobby has spiked fevers every day, his counts are minuses, he is still testing positive to covid after 4 weeks, he has a cold, waiting on his results from all his bloods cultures and hopefully figure out what is happening with him.
What infection he has!
We are in covid ward which is extra miserable, can’t leave, can’t go and make a cup of tea, can’t socialise with other patient friends..
Bobby still isn’t eating, so he is on his tube feeds 247!
Doesn’t even want to play..
lots of resting and sleeping π΄
Come on our little Bobby Ray βοΈ
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#miserable #chemotherapy #childcancer #warrior #help #covidpositive #hospital #sleeping #childtrauma #fight #cancermom
This week has been a real struggle
Emotionally, mentally! We are exhausted.
From all the shit that has happened & just been trapped in these 4 blue walls, watching Bobby so sick & frastrated from the chemo & steroids! Makes him so demanding, he doesn’t know what he wants.
Bobby is just finishing off his last chemo for the week this one can cause anaphylactic shock, all chemos have side effects & can cause side effects up to 6 months later.
fingers crossed we can go home this afternoon π€π½
This stay he has had two platelets and one blood transfusion, 9 different chemos, endless medications, days of vomiting, hasn’t taken a step in 6 days & trapped to his bed!
Get us out of here!!!
You are the bravest little man Bobby Ray ππ
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. #overit #chemotherapy #cancer #fighting #steriods #hospital #bobbyray #needstogohome #fraustrated #leukemia #love
Block 3
We didn’t miss this place.
Colin & i are disappointed, upset at our doctors, our team here at the hospital, three weeks ago we left & haven’t heard from them since, after several phone calls to our nurse to get our doctors to call us. NOTHING!!
We were left to decide on what medicines and treatment we were meant to give to Bobby.
Still waiting on our last Bone marrow results from the last surgery.
Not even to check to see how he was while having Covid.
The system failed us, we felt like Bobby was just forgotten. They didn’t care!
There isn’t enough Doctors & nurses to cover the amount of patients.. patients are being forgotten! This shouldn’t happen!
I have spoken to other oncology parents & this is happening way to much.
We are back in hospital for Bobby full week of chemo, unfortunately we are in the covid ward isolated. 12 chemotherapy, steroids, lots of medicine! He is fasting at the moment waiting to have surgery, but since he was covid positive we have to only go to covid surgery ward so he will be waiting a while today. Going to be a tuff week for our little man, he will be very sick for the next few weeks! After having a few weeks break.
You got this my Bobby Ray βοΈ
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. #childhoodleukemia #chemotherapy #sideeffects #forgotten #cancer #childcancer #hospital #warrior #bobbyray #sydneychildrenshospital #strong #surgery #leukemia #gotthis
Our family isn’t defined by last names, or by blood, it defined by commitment and by love, it’s by showing up when they need us the most, it’s having each other’s backs, it means choosing to love each other & never giving up! They are brothers & sisters by love
These Kids are our world and we are so happy that we had a day to remember for ever!!
Making memories
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.#family #love #makingmemories #bobbyray #sibblings #chemo #cancer #living #dreaming #eastershow
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