MEETING THE PRINCESSES Yesterday was a pretty amazing day. It was only our second day in a park and we spent it at Epcot. I hadn’t actually expected much from this park but wow did we have a good day. Aside from the rides, I really wanted to get to see the princesses. Every single one was amazing. Belle (one of my childhood faves) was pretty special and gave Orla a kiss in her autograph book as well as signing, but the day goes to meeting Anna and Elsa 🩵 When the time came to walk in and meet them I cried my eyes out. Orla would have loved to meet them and in that moment all I could think about was her and how excited she would have been. Each Princess signed their books and had photos then they did something extra special for us and let the girls have a picture altogether as sisters 💜 It was so special. They also made sure no one else came in whilst we had this time with them. I know Orla was with us yesterday. I definitely believe in the signs. We took the skyliner to Epcot and was put in car 29 (I thought to myself oh 2+9 is 11 - Orla’s birthday) then on the way back we were put in car 11. Some might not see anything in this at all but I know it was a sign along with the butterflies 🦋 that followed us all day around the park. #Cancer #ChildhoodCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedMedulloblastoma #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #WDW #DisneyWorld #Epcot #Princesses
777 CHALLENGE What? The 777 Challenge is 7 Marathons, in 7 Countries, in 7 Days, in memory of our beautiful daughter Orla who sadly passed away from a rare paediatric brain tumour in August 2023. Why? We are hoping to raise £100K for a new patient family room within the New Children’s Cancer Centre for Great Ormond Street’s Build It, Beat It Campaign. Where? The journey will start in London, then move onto Brussels, Amsterdam, Munich, Zurich, Milan and finish in Paris. In total this will be just over 183 miles in 7 days, without taking into account the time and distance needed for travelling between countries. Who? Will Ridgway (Adam’s friend and work colleague) and Tim Basler (Will’s close friend) are completing all 7 stages, with Adam joining them for the first Marathon in London, then the final Marathon in Paris. #Cancer #ChildhoodCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedMedulloblastoma #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #777challenge
777 CHALLENGE #Cancer #ChildhoodCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedMedulloblastoma #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #777challenge #7Marathons
777 CHALLENGE #Cancer #ChildhoodCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedMedulloblastoma #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #777challenge #7Marathons @greatormondst
ONE YEAR AGO…… Just leaving these here as she’s just too blimmin cute 🥰 Miss her smile and giggle so much. It was so infectious 💜 #Cancer #ChildhoodCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedMedulloblastoma #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #Memories
@orla_thebossbaby was diagnosed with medulloblastoma, a type of brain tumour in September 2022 when she was just one years old. Tragically, Orla did not survive her diagnosis and passed away on 12 August 2023. Her mum Naomi shares their story: DAYS GET HARDER…… It’s really felt like things have been getting harder and harder the last few weeks. A year ago, Orla and the family were fresh out of treatment and adjusting to life back home post treatment. It was supposed to be her start at life again. She was actually doing really well and looked so well. The best she’d looked in over 7-8 months. They know the next few months are going to get harder as they approach the year mark of her passing… Looking back at those year ago memories, and also looking ahead at everything she should have been doing this year - like starting school in September. “Every day feels like we’re holding back the tears and painting on a smile, yet at any moment we could break down in tears.” “Grief really is a complicated thing. We know from the outside it may look like we’re doing good, having fun and getting on with our lives. But actually it’s all just a facade, to hide the pain of how we really feel. Some days i’d actually like (if asked how I am) to say ‘you know what, I’m f@cking shit and I’m so unbelievably sad’ 😭. But how would someone cope or react if I did?! “ “Grief never leaves you, and we will forever long to see our baby girl again 💔” To read her story in full please click the link : https://tr.ee/7c0un0mAZC #Cancer #ChildhoodCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedMedulloblastoma #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #OncologyMum #CancerRelapse #helplisa2helpothers #gogreyinmay
DAYS GET HARDER…… It’s really felt like things have been getting harder and harder the last few weeks. A year ago, we were fresh out of treatment and adjusting to life back home post treatment. It was supposed to be her start at life again. She was actually doing really well and looked so well. The best she’d looked in over 7-8 months. We know the next few months are going to get harder as we approach the year mark of her passing… Looking back at those year ago memories, and also looking ahead at everything she should have been doing this year - like starting school in September. Every day feels like we’re holding back the tears and painting on a smile, yet at any moment we could break down in tears. Grief really is a complicated thing. We know from the outside it may look like we’re doing good, having fun and getting on with our lives. But actually it’s all just a facade, to hide the pain of how we really feel. Some days i’d actually like (if asked how I am) to say ‘you know what, I’m f@cking shit and I’m so unbelievably sad’ 😭. But how would someone cope or react if I did?! Grief never leaves you, and we will forever long to see our baby girl again 💔 #Cancer #ChildhoodCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedMedulloblastoma #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #OncologyMum #CancerRelapse
No real update other than we wanted to share some normal life stuff we are doing. Wasting a few hours with a tour of playgrounds, with little sis while big bro is at practing. And loving on one of our favorite tiny humans. She's in school full time dealing with normal life stuff. Still on the clinical trial and doing well with it. Next appointment is next week. #fiercekalyani will be having an ultrasound of her kidneys, as a precaution, though we aren't too concerned. She will also be celebrating her birthday next week and officially becoming a teenager 🥳 *She has a wish list and donation links in her bio/ linktree link if anyone is interested. . . . #cancerwontwin #childhoodcancerwarrior #childhoodcancer #childhoodcancerawareness #relapsedcancer #relapsedmedulloblastoma #medulloblastoma #braintumor #braintumorawareness #fightlikeakid #fightforourkids #morethan4
HOW ONE PERSON CAN BE TWO DIFFERENT PEOPLE….. When Orla was in treatment, we started to realise that we saw two different children. The Orla before cancer, and Orla with cancer. That comparison has become even more prominent since Orla passed away. I find it hard to look at any pictures of Orla but realised that the pictures pre diagnosis affect me more. I feel like we grieve two little girls. The beautiful little girl pre diagnosis - we lost her 19 months ago when she was first diagnosed. She was so pure, with no holes in her head and body and no tubes coming out of places. She was just a young little toddler - so innocent. Then we have Orla with cancer, who we lost almost 7 months ago. She’s the little girl we lost. She grew up and changed whilst in hospital. She went from toddler to little girl without us even knowing. So smart and wise even though she was confined to hospital walls. It’s really hard to fully articulate how these two beautiful girls feel like two different children. I think the only way we’ve been able to deal with it all at different stages is to separate the two little girls. A way to separate and deal with the trauma. Pretty sure it’s a form of PTSD we now suffer with. The pre diagnosis pictures just make me so unbelievably broken. 😞 I lost this beautiful little baby to something so evil. This horrible disease took everything from her and the girl she was supposed to be….. Then the pictures taken during the 11 months she battled the disease - they show this helpless little girl with cancer. Battling through things that no child should ever have to go through, yet she did it all with a smile on her face. Every picture tells a story, yet her story was cruelly cut short. We only have these pictures to look back on as memories, and remind us so we never forget. That’s the crazy thing, you don’t want to forget any of it, because it’s a reminder she was real and she was here. #Cancer #ChildhoodCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedMedulloblastoma #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief
Dm me cash to get started x #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #OrlasAngels #theorlatuckwellfoundation
HAPPY 8TH BIRTHDAY POPPY 🎈🎊 From the moment Orla was born, poppy and Orla had a strong bond. Poppy would care for her and help me with anything I needed for Orla. As Orla grew, their bond grew stronger, with Orla always wanting Poppy to play with her and carry her around. Poppy was Orla’s go to person. Throughout treatment it was tough for all of them. Being apart was hard. But poppy understood Orla’s needs and always put them before her own. There’s not a day that goes by where Poppy doesn’t say how much she misses her baby sister. A big hole has been left in her life and trying to understand why this has happened to Orla and them is hard for her. Orla would have loved celebrating with her big sister today. But we always make sure Orla is part of everything we do and celebrate. Orla would have said ‘Happy Birthday bubba’ (that’s what she called poppy). We know she is somewhere saying it, looking down on poppy 💜🎈🎁⭐️ #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #OrlasAngels #TheOrlaTuckwellFoundation
EASTER 2023 Last year we spent Easter all together in GOSH. The girls all had some lovely Easter bags and hats delivered by @aoifesbubbles We then went across the road to the pub for a lovely Sunday lunch. We had such a lovely day all together, the girls just playing and doing their Easter stuff. It’s another day where we’re reminded that she isn’t here, another day missing making memories 💔 We took Orla her bunnies today and left them in her garden 🪴 🌸 Happy Easter Baby Girl 💜⭐️ We miss you more and more each day x @greatormondst #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #OrlasAngels #TheOrlaTuckwellFoundation
HOSPITAL SCHOOL A year ago, Orla had her first and only session at the hospital school. They came to her in her room because of her being an oncology patient. The reason this was her first session was because of the waitlist - particularly for early years which is the age group she came under. There aren’t that many early years teachers within the hospital and because sessions were once a week, she hadn’t been able to have one before this. It was such a shame she had to wait so long as she would have really benefitted from having regular sessions given she wasn’t able to mix at any groups. Yet her first session ended up being at the very end of her treatment. In hindsight, it turned out to be her only time at a ‘school’ which is so upsetting to think about now given she would have been starting school this September. Orla absolutely loved the session. Considering this was 7 days post sepsis, she did amazing! Her concentration and coordination was just incredible 💜 As part of the construction of the new cancer centre at GOSH, there will be a new and improved hospital school with special facilities for oncology patients. #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #OrlasAngels #TheOrlaTuckwellFoundation
Dm me if you need help with cash #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #OrlasAngels #TheOrlaTuckwellFoundation
COMING OFF THE VENTILATOR….. A year ago, after 4 days in PICU, Orla was taken off the ventilator and ‘woken’ up. It was the hugest relief to see our baby open her eyes after 4 days sedated. However the effects of the medications had taken its toll. When she came around she didn’t even look like her. She was extremely swollen from all the extra fluid she needed. She was 2kg heavier! We were told that she’d be very spaced out for a few days and she would probably get some withdrawal side effects from the morphine and fentanyl. Over the next day or so, Orla’s skin became itchy from the withdrawal and she was clawing at her skin! We had to put socks over her hands so she couldn’t scratch! There was a few moments over the next two days where she needed extra oxygen because she was struggling to breathe from all the extra fluid around her lungs. She had to be given lots of the drug furosemide to flush it out. We were also told that she’d be assessed to see if there was any damage to her brain from her heart stopping. That was a scary thought but we knew our baby girl was going to recover. In a regular child (without cancer) it can take up to 6 months to fully recover from sepsis. Our girl just bounced back though and within a week she was back to being our cheeky girl 💜 #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief
*Pictures from last week's school Fun Run* I am so excited to announce that results from her MRI showed that #fiercekalyani is still STABLE 🎉🎊🥳 This marks ONE YEAR of being stable. No growths, no changes. Not many can grasp the magnitude of this. Relapse of Medulloblastoma, with leptomeningeal spread is considered terminal. This girl is defying that. She is stronger than she has been in a long time. Her counts are almost all in the normal range. We are so thankful for that. Today we celebrate this beautiful fierce human! She truly is unstoppable!!!! . . . #scanresults #MRI #childcancerwarrior #childhoodcancerawareness #pediatriccancer #braintumorwarrior #braintumorawareness #medulloblastoma #relapsedmedulloblastoma #relapsedcancer #gogoldforchildhoodcancer #fightlikeakid #fightforourkids #morethan4
Dm me if you need help with cash #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #OrlasAngels #TheOrlaTuckwellFoundation
MOTHER’S DAY Last year’s Mother’s Day was spent in GOSH. I woke up in hospital with Orla and spent the morning just me and her before Ava and poppy came to the hospital to spend it with us. It was also the first time all the girls had seen each other in 4 weeks due to Orla’s treatment. It was such a special afternoon. Seeing them altogether and seeing how much they all missed each other 💜 It breaks my heart looking at these pictures now knowing what this day now means. It was my last Mother’s Day with all three of my girls together 💔 This was a day that usually brought so much happiness, so much joy. Yet now it feels like a celebration tainted with sadness. How am I supposed to celebrate being a mum when one of my children is no longer here?! I love being mum to Ava and Poppy and celebrating with them. They always make such a fuss to make things special. But I can’t help but imagine what today would have looked like if Orla were still here 😢 Thinking of everyone today who is without their mum, struggling to become a mum but most of all, those who are without their child on Mother’s Day. No mother should not get to celebrate with their child 💔 #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #OrlasAngels #TheOrlaTuckwellFoundation
HAVEN HOUSE CHARITY BALL A special evening attending the annual @havenhousech charity ball. Each year, the hospice will have a focus on the evening (to do with the services they provide) to raise money for the hospice. This year, they asked us if they could honour Orla with the focus being on the end of life care they provided to her and us as a family. It was an emotional evening, hearing them talk about our baby girl but we are so grateful. Without evenings like last night, the hospice wouldn’t be able to provide all of the amazing services they do, to children who require specialist help. #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #OrlasAngels #TheOrlaTuckwellFoundation #fundraising #HospiceCare #EndOfLifeCare
🎗️Brain Tumour Awareness Month 🎗️ Today marks the 1st day of brain tumour awareness month. Brain tumours kill more children and adults under the age of 40 than any other cancer, yet just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002. Last March Orla was in high dose Chemotherapy. During that time, she had a serious line infection which resulted in a very severe case of sepsis where her heart stopped for around a minute and we almost lost her. This is only one of the many symptoms caused by having treatment to treat this awful disease. Despite that, she overcame it and it was ultimately the disease which took our girl. Our beautiful Orla deserved better & should still be here today 💔 Please join us tonight at 7:30pm in lighting a candle in memory of Orla & all of the other people who we have sadly lost or are affected by brain tumours @braintumourrsch #shinealight #braintumorawareness #BrainTumourAwarenessMonth #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #OrlasAngels #TheOrlaTuckwellFoundation #fundraising
A Year Ago Today…… Orla had just finished 6 days of high dose chemotherapy and was on two rest days before getting her own stem cells back on 1st March. Throughout this treatment she just did amazing. I remember this day so well. We were up, she tried some food and she wanted to get up out of bed and play and walk around. She put on her shoes and just walked around the room (we wasn’t allowed in the hallway at this point) I remember taking a these photos and her giving me the biggest cuddles and the biggest kisses. 😘 I miss this sooooooo much it hurts like crazy 💔⭐️ #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #OrlasAngels #TheOrlaTuckwellFoundation #fundraising
S I S T E R S With everything that has happened over the last 18 months, it’s hard to appreciate the ripple effect events have had on our direct and indirect family. Watching this video the other day made me and Naomi cry instantly and reminded us of what it was like for Ava and Poppy during Orla’s treatment, the operations, her time in hospital, losing their Nanny Alfie in the middle of all this and then seeing Orla return home to then lose her 😢 From the moment that Orla was first admitted to Harlow Hospital, me or Naomi were always by Orla’s side holding her hand, and when we were so focused on Orla that meant Ava and Poppy inevitably felt the effects of our absence. - They had to stay at different houses every night for weeks until one of us finally returned home. - They had to be dragged out of hospital in tears because they didn’t want to leave us or Orla. - They didn’t get to see their sister for weeks on end because it posed too much of an infection risk and had to rely on FaceTime when Orla felt well enough. - They had to become familiar with the wonders of hospital food, which they genuinely started to enjoy and doesn’t say much for mine or Naomi’s culinary skills. Amongst all of this they just simply missed their Mummy, Daddy and baby sister. We always talk to the girls about Orla, and Ava and Poppy are dealing with the loss in their own way. They draw pictures of Orla, laugh about the games they used to play and the films they used to watch together. The other night, Poppy wrote the poem that she read at Orla’s funeral and left it on our bedside table, which again reminds us that even when they aren’t talking about Orla they are always thinking of her 🥰 #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #OrlasAngels #TheOrlaTuckwellFoundation #fundraising
One Year Ago - High Dose Chemo One year ago today, Orla went back into great ormond street to begin high dose chemotherapy. With High dose, the child will be in hospital for a minimum of 4 weeks and on average 7-8 weeks depending on their recovery. For those who do not know, this entails chemotherapy and stem cell transplant. For Orla’s cancer, she had 3 different drugs given for 6 days (known as -8 as the start point) - these were carboplatin, etoposide and thiotepa. She then had two days rest and on day 0 she was given her own stem cells back (these were harvested and frozen back in the December) After the stem cells are given, it’s just recovery to the point that you know the cells have engrafted (where they start to grow and make healthy cells) and the child is feeding normally and neutrophils and bloods are where they should be. Each day she would have to be bathed twice minimum (morning and evening) as well as changing bed and clothes twice a day. This is because the thiotepa excretes through the skin and can burn. This was whilst still being attached to machines for chemotherapy, fluids, pain relief, bloods etc. It was NOT an easy task!!! Orla actually coped so well during high dose - the best of all the chemos!! She remained mobile throughout most of it (until sepsis hit) and played in her kitchen a lot! We’re actually approaching a year since Orla had sepsis and we’ll be doing posts about this nearer the date. It was one of the most traumatic times we experienced to that point, we didn’t think it would get worse than that. But as always she beat the odds and pulled through it. A few pictures from her first days getting chemotherapy in high dose 💉🩸🧬🩺💊 #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #OrlasAngels #TheOrlaTuckwellFoundation #fundraising
6 MONTHS WITHOUT YOU 💔 Six months of not being able to hold you…. Six months of not being able to kiss you and tell you we love you….. Six months of not seeing you laugh….. Six months of not seeing your beautiful smile…. Six months of not hearing your voice….. Six months of the worst possible heartbreak…. 💔 Six months of crying every day…. Six months of longing to see you again….. Six months of seeing how much your sisters miss you…… Six months of our lives changing forever….. Six months wishing things could have been different…. Six months since you took your last breath….. So much changes when you lose a child. It’s very hard to articulate to people what it truly feels like. Your whole world as you knew it changes. You change. We try to be better, but deep down we’re just sad, longing for Orla to be here 😢 These pictures were taken just after Orla had passed. I questioned whether to share them or not. In these moments there was an unbelievable, heart wrenching sadness, yet joy at being able to hold her and cuddle her. It’d been almost two weeks since we’d been able to do that as her little body was too frail and delicate to hold 💔 It’s too soon to discuss what she went through in those last weeks. It just wasn’t fair. I think that one of the things I miss most, is just being able hold her, hold her hand and kiss her. The things so many take for granted. We miss you so much every day Orla. Not a day passes when you aren’t at the forefront of our minds. Keep being our shining star and guiding us 🌟 🤍🪽 #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #OrlasAngels #TheOrlaTuckwellFoundation #fundraising
ONE YEAR OLD ORLA I thought it’d be nice to share a few more pictures of Orla - pre diagnosis. These are from around 2 years ago when she was around 12-15 months old. 💜 She always had the biggest smile on her face and was always up to mischief…. Even then she always lit up the room ⭐️🤍 #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #OrlasAngels #TheOrlaTuckwellFoundation #fundraising
UP AND DOWN I feel like I’ve barely posted about Orla recently. I know I’ve shared memories from a year ago but I’ve just not shared any pictures. Yet every picture will always be a memory, because we don’t have new pictures. We’ve really found it hard again this week. It really is so hard to convey the ups and downs of grief. You know your child is gone, and that you won’t see them again, but then there’s moments where you really think about it (we’re always thinking about it) and it hits you like a tonne of bricks! Uncontrollably crying because we miss her so much, we miss everything about her. We miss what she’s missing out on, we miss hearing her voice and seeing all the funny things she used to do. 😢 Being reminded every day that she’s not here. I really wish we could show people how amazing she really was. She wasn’t a normal 2 year old. She had so many amazing things about her. The fact she could show you so much sympathy and empathy when we were sad - she was just so connected to people’s emotions and feelings 💜 she truly was a gift from heaven ⭐️ I in particular put on an extremely brave face like everything’s okay, when in reality I am masking big time. But that’s my way of being able to get on with things. We miss you so so much Orla ⭐️🤍🪽 #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #OrlasAngels #TheOrlaTuckwellFoundation
Credit belongs to: @.orla_thebossbaby with @get_repost If you like it...please Follow me to see more BACK TO WORK It’s been over 3 years since I last worked. I went off on maternity leave just before I had Orla in December 2020. I was due to return in November 2021 but had to leave due to Adams mum being unwell and childcare for Orla. It was nice being able to spend the extra time with Orla. I actually didn’t feel ready to go back so it was a blessing in disguise for so many reasons. Fast forward to September 2022 and Orla was diagnosed with a brain tumour. The plan was always for me to return to work part time when Orla started school nursery this September. The last few months I’ve really struggled with brain fog - feeling so forgetful and just like I have no focus. I felt like it was the right time to go back to work so today, I start a new job. I was feeling super sad yesterday. My whole life for the past 3 years had been Orla and I was hers. She was with me 24/7 - even before she was ill. It’s just such a big adjustment to get my head around. My daily being has gone. When you care for someone 24/7 and it gets ripped away from you it’s hard to come to terms with. Everything you knew changes. However I know this is a good step for me. The best part is it’s super near Orla so I’ll be able to visit her in my lunch when I’m working 💜 #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #OrlasAngels #TheOrlaTuckwellFoundation #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss ZzHaveagooddayzZ
BACK TO WORK It’s been over 3 years since I last worked. I went off on maternity leave just before I had Orla in December 2020. I was due to return in November 2021 but had to leave due to Adams mum being unwell and childcare for Orla. It was nice being able to spend the extra time with Orla. I actually didn’t feel ready to go back so it was a blessing in disguise for so many reasons. Fast forward to September 2022 and Orla was diagnosed with a brain tumour. The plan was always for me to return to work part time when Orla started school nursery this September. The last few months I’ve really struggled with brain fog - feeling so forgetful and just like I have no focus. I felt like it was the right time to go back to work so today, I start a new job. I was feeling super sad yesterday. My whole life for the past 3 years had been Orla and I was hers. She was with me 24/7 - even before she was ill. It’s just such a big adjustment to get my head around. My daily being has gone. When you care for someone 24/7 and it gets ripped away from you it’s hard to come to terms with. Everything you knew changes. However I know this is a good step for me. The best part is it’s super near Orla so I’ll be able to visit her in my lunch when I’m working 💜 #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #OrlasAngels #TheOrlaTuckwellFoundation
Every Sick Child Deserves a Katie We use the name Katie as a generic name for all NHS nurses, although Orla did build a special bond with her nurse Katie. It’s not just the Katie’s though, it’s the Lucy’s, the Kira’s, the Brenda’s, the Kim’s and basically ALL NHS nurses who care so much for us and our children during our times of need. It’s not that doctors/consultants or other members of the NHS aren’t highly skilled, compassionate or amazing people, but as parent’s who spent so much time in hospital you develop a real bond with the nurses. - They are the ones who are helping to hold the sick bowls with you at 2AM after the 5th vomit. - They are the ones who have to connect your child to cytotoxic chemotherapy and have to watch the effects it has on your child. - They are the ones who know your child inside out, when they’re feeling good/bad/happy/sad.. and also when to question whether that infection might be turning into something sinister - like sepsis! - They sneak into the room even when they’re not looking after your child to play row row row the boat, or play pretend afternoon tea!!! - They also listen.. they don’t judge or dismiss.. they listen. They don’t have all the answers but they listen, and gain your trust. - They’re also the ones crying with you when your child is being moved to Intensive Care not knowing whether she will survive. - They’re human beings who have to deal with the loss of a child just like us, but it’s actually part of their job. We are so grateful and thankful to ALL of the amazing NHS nurses and owe them more than we can ever articulate, and we know that every child’s journey leaves a mark in its own way. We are very lucky to have the NHS and all its amazing staff. @greatormondst and @princessalexandranhs we were so lucky to have your amazing nurses looking after our beautiful Orla. #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #OrlasAngels #TheOrlaTuckwellFoundation
Credit belongs to: @.orla_thebossbaby with @get_repost If you like it...please Follow me to see more MISSING YOU Gosh I miss you so much. I remember the day I filmed this in Koala Ward back in July. We were sitting with you just watching films and cuddling. This was just days before you could barely talk. Things changed that quickly. Watching your baby deteriorate before your eyes, it shouldn’t happen! I cried when filming this and I cry every time I watch it now. Knowing there was nothing I could do to save her, but just be there and love her and cuddle her 💔 #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #OrlasAngels #TheOrlaTuckwellFoundation #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss ZzHaveagooddayzZ
✋🏼 MEMORIES TO CHERISH ✋🏼 When Orla relapsed, we were all over the place working out the things we wanted to do to make memories and remember Orla. Between @havenhousech @foreverfinley_charity and @tinks_and_toes they arranged for Danielle to come out to us at home and take some casts of Orla’s hands and feet as well as the girls hands so we could frame them and have a lovely memory. We haven’t yet got round to putting them up as we just can’t decide where they should go, but they are just so beautiful and such a lovely memory we will cherish. Thank you all for helping create this special memory for us. Families going through end of life care will forever be grateful for moments like these. We also had some finger prints and hand prints of Orlas taken that we can get made into memorial jewellery. We haven’t had ours done yet but @havenhousech provided these lovely charms of Orlas hand for the girls Pandora bracelets 💜⭐️ #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #OrlasAngels #TheOrlaTuckwellFoundation
8th JANUARY 2023 Reunited with her big sisters since just before new year. It was always lovely when Ava and Poppy came in at the weekends whilst Orla was in hospital. She absolutely loved seeing them and they would always make a fuss of her. Playing with her and dancing to frozen. ❄️ We’d all do anything to go back. To go back to moments like these, even though you don’t want to go back to hospital stays. It’s better than not having her at all. #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #OrlasAngels #TheOrlaTuckwellFoundation
MEET PEPPA We’d spoken about getting a puppy when Orla first finished treatment last April. Orla adored all the therapy dogs that would come round and visit whilst in hospital. When she was feeling really rough, they would put a smile on her face and cheer her up and make her want to get out of bed. It was exactly a year ago that we had Levi the therapy dog come to see us in @greatormondst after we’d managed to get out for a walk for the first time in almost 7 weeks in hospital. (See pictures) So we thought once Orla was in a good place post treatment, we would get a puppy. Well obviously things didn’t quite work out that way and we put it on hold. Before Christmas the girls kept talking about puppies and how much they’d love one. Then they said if they got one they’d call it Peppa after peppa pig as that is what Orla would have wanted to call her. Well that was it, as soon as we heard that we knew we had to get one. So here she is, our little Peppa. Bringing us a little bit of joy whilst reminding us of Orla 💜⭐️ @bellaspuppys #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #OrlasAngels #TheOrlaTuckwellFoundation
Credit belongs to: @.orla_thebossbaby with @get_repost If you like it...please Follow me to see more One year ago……. Just Orla being Orla and being cheeky, loving playing boo. When that girl felt better, she was so full of smiles and laughter. This was at the end of cycle 3 of chemotherapy. We’d been in for 6 weeks at this point as she’d been so ill in between cycle 2 and 3 she had to stay in. We went home a few days after this and had about a week at home before she went back in for cycle 4. Treatment was relentless but she never complained. She was just her happy, cheeky self. I know that many of the nurses would remember Orla like this 😊 #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #OrlasAngels #TheOrlaTuckwellFoundation #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss ZzHaveagooddayzZ
HAVEN HOUSE HOSPICE When Orla relapsed & there was no longer a cure, we were under the palliative care team at GOSH as well as Haven House Hospice as it was our nearest Children’s Hospice. When we left GOSH we wanted to stay at home as long as possible to make memories with Orla but she became unwell very quickly. We started having support at home daily from Haven House before we then moved to the hospice in Orla’s final days. The hospice has a separate family flat within the hospice for end of life care. Being in this flat meant we could all be together with Orla, whilst having 24/7 care. It took the pressure off of us having to be her nurse/carer as well as parent. During the summer holidays they have different events & activities for children staying at the hospice & their families. Whilst there, ava and poppy got to take part in music therapy, yoga, woodland trails, outdoor arts & crafts as well as watching some of the shows they had on. This helped make it a positive experience for them whilst their baby sister was in her final days. We even got to take Orla outside in the sunshine and sit in the beautiful grounds. The staff supported us as a family and made sure we had everything we needed. We cannot express how deeply grateful we are to haven house for the care and compassion they showed us. The people that work here are truly special people. With that in mind, on 23rd September as a family, we’re taking on a mud run for haven house to raise money. Ava and Poppy are very excited to be doing this to support a place they know cared for their baby sister and also gave them lots of support too. They are a charity and need all of the support they can get, to help more families like ours. If you’d like to support us the link is on Orla’s LinkTree. I’ll also pop it on stories. As always, we are so grateful for everyone’s love and support 💜🤍 @havenhousech #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #CancerMum #OncologyMum #RelapsedCancer #RelapsedMedulloblastoma #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #ChildhoodCancerAwarenessMonth
A MIX OF EMOTIONS… As we approach the end of 2023, we have a whole host of emotions about the year. It’s been the worst year of our lives, losing our precious baby girl. We never imagined that this would have been how our year would end. We want to see the back of this year and everything we’ve had to endure as a family, yet we don’t want to leave this year behind because it’s the year we still had our precious Orla on this earth. Every day we go forward is another day further from when we lost her. Yet every day forward is another day closer to meeting again. We have to look forward. 2024 will be the start of good things to come in Orla’s memory and name. We have so much we want to do to help other children with brain tumours, to help other children and families having to go through end of life care. To keep on raising awareness and sharing Orla’s story to help others. Thank you to everyone who’s helped us, donated money along Orla’s journey and been there to support us. We can’t thank everyone enough for their continued support for our baby girl 💜 We will be doing an update on what we’ve raised so far and what the detailed plan is going forward. We’ll also be updating everyone with the money that was raised with the go fund me last year and where some of that money has already gone to help and where the rest will go. #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #OrlasAngels #TheOrlaTuckwellFoundation
🎄CHRISTMAS EVE 2023🎄 Not what we hoped it would be - never in a million years did we think last year would have been Orla’s last Christmas 😢 We know the next few days are going to be extremely hard - trying to come to terms with the grief and sadness whilst finding moments of joy and happiness for Ava and Poppy. We’ve had our Christmas Eve tradition since Poppy was 2 - our family Christmas Eve pyjama photo. It didn’t seem right to do one of all of us without Orla so instead our new tradition will be Ava and Poppy holding Orla 💔 Even writing this brings me to tears 😭 We’d like to thank everyone who has supported us and Orla and to everyone who continues to follow this journey as we start Orla’s legacy. Wishing everyone a joyous Christmas 🎄 Lots of Love Naomi, Adam, Ava, Poppy and our Angel 👼🏼 Orla ⭐️ xx *Swipe for a few past Christmas Eve photos including last years at @greatormondst t #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #OrlasAngels #TheOrlaTuckwellFoundation
ORLA’S ANGELS The loss of our beautiful girl is quite simply beyond words, but one thing that has helped us deal with this pain is to continue Orla’s legacy, tell her story and create some good in this world. As we start to create ‘The Orla Tuckwell Foundation’, one of the things we want to do is give back to the amazing nurses and also do something nice for families and children who have to spend time in hospital at Christmas, like we had to last year. So with the help of some amazing people and local businesses, we created these Christmas gift boxes - our nurses ‘Orla’s Angel’s’ gift box and our parent ‘Comforts Box’. The parent box is filled with a few comforts we found useful when we were in - a fleece blanket, slippers, hand wash and hand cream, tea bags, biscuits etc. Thanks you to our local @marksandspencer #MarksandSpencerCheshunt- in particular Michele and Angela for providing us with them items. It was quite an emotional couple of days visiting Harlow Hospital and @greatormondst as we were so used to having our baby with us, but this time we didn’t get to stay with her or take her home which breaks our hearts. We hope to do this every year and if possible expand to give back to more nurses and amazing families. Hand Cream - @nursemskincare Biscuits - @thescrummycakeco Candles - @hollybushcandle @dtuckwell and @brave_citizen as Orla’s Lead Designers #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #OrlasAngels #TheOrlaTuckwellFoundation
LAPLAND UK Yesterday we took the girls to Lapland UK. We’d never been before. I booked it back in March when Orla was in high dose as something for us to look forward to after the crap 6 months we’d just had. We thought it could be a little early birthday treat for Orla as well. Obviously the trip was different to how we’d originally planned. It was filled with happiness but also sadness. Trying to separate the two is so hard. You’re happy you’re in that special moment with your two other children but so unbelievably sad that someone special is missing 😢 It was an opportunity for us to ‘take Orla’ with us and leave another memory pebble in somewhere she’d visited with us. See if you can spot it in some of the photos. We left it safely with Santa where he will make sure it’s looked after - to see Santa cry is not something you expect to see but made it all the more special. We’re feeling a whole bag of mixed emotions as we approach Orlas 3rd birthday on Monday. Missing Orla gets harder and harder every day 🤍⭐️ #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief
ALWAYS TOGETHER Thank you so much to the amazing @sarahward_photography for more beautiful pictures of the girls. Orla always in the middle of her big sisters where she belongs 🤍⭐️ Our three beautiful girls 💜💜💜 #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief
THE THINGS YOU DON’T REALISE ABOUT CANCER…… It was a year ago that Orla went in to surgery once again to have two different procedures. The first was ovarian tissue preservation. As Orla was following the high risk protocol and having very high doses of the chemotherapy drugs she was having, we’d been told that it was extremely likely she would become infertile. So she was offered surgery to preserve the ovarian tissue from one ovary where it would be frozen and stored for the future, when and if she decided to have children. I cried when we were told she would become infertile. To have cancer take away another thing from her. And at just 1 years old - it wasn’t fair! But it was a no brainier to give her a chance so she still had options in the future. It makes me so sad 😭 now to think she won’t even get that chance. I hate cancer so so much. The second operation was to have the PEG (feeding tube in her tummy) fitted. Again this was such a scary prospect but honestly once it was done, it was a lifesaver. No more NG tubes coming out of her nose, she got her face back and it made feeds so much easier. Hours after the ops, which were done at St Mary’s, we were at GOSH to start the second round of induction chemo. This became the worst time for orla physically - she was so unwell during this period that she stayed in for cycles 2 and 3 without leaving and did a 7 week stay, spending her birthday, Christmas and new year in GOSH. Looking back on this time is hard for so many different reasons. Our family was going through such a difficult time. Seeing Orla so unbelievably unwell for so long was so hard. She spent most of this time in bed, unable to play or stand from being so weak. But she always fought back and always had a smile on her beautiful face 💜⭐️ (Some pics of the set up we had on a daily basis - Orla’s bed and our luxury camp bed next to hers!) #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief
Adam’s Mums 70th Birthday Today should have been a very special day, a day of fun, laughter, a day spent celebrating as a family, Celebrating 70 years of my beautiful Mum being on this planet. Unfortunately life doesn’t always work out the way you’d planned, and my beautiful Mum sadly passed away last year on December the 6th after a 2 year battle with Ovarian cancer. My Mum was a beautiful woman, full of strength, positivity and most of all love. She loved her family so much, especially her grandchildren. I never thought that it was possible for Mum to love anyone more than me, Dan, Dad and Alfie (the dog), but as soon as her Grandchildren came along something in Mum changed. I have never seen anyone more proud, protective and caring than when Mum was with her 5 beautiful grandchildren. They could do no wrong. Mum was in hospital fighting another infection when she found out Orla had a brain tumour and apparently nearly screamed the ward down. She discharged herself and rushed down to Great Ormond Street to see her baby, or “Moo Moo” as she called her, and as normal brought presents, but most of all love. Mum was devastated, and it broke her heart to see Orla connected to machines, undergoing life saving surgery and also having to start chemotherapy, which Mum knew first hand would be devastating to Orla’s tiny body. CONTINUED IN POST……… #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief
Children’s Grief Awareness Week I hadn’t realised until yesterday that it was the start of children’s grief awareness week. These two beautiful girls are amazing. They are going through something that no child should ever have to go through at their age, yet there are many other children in the same position. Losing their baby sister has been hard on them for so many reasons. They’ve lost so much. Ava’s lost her role of the biggest sister, and poppy has lost being a big sister altogether. Of course they will always be those, but physically they aren’t. They did everything to make her happy - played with her in her little garden house, played tea parties, read to her, included her in their grown up games, danced with her, dressed up with her - in a way, it kept them young as well whilst they would play. All of that has gone though - the dynamic has changed. They don’t do that any more because the reason they did those things has gone 😢 Trying to help your children navigate through grief when you don’t know how to navigate it yourself has to be one of the hardest things we’ve ever had to do. We’re still learning and still at the beginning but we know that they need to grieve and they grieve in different ways. They need to be heard, they need to be loved and they need to feel safe. They need the people they love to be there for them. They need to talk about Orla - as do we. We know a lot of people think that talking about her will just upset us and yes it probably will, but we still need her to be brought up and talk about her. They need it, we need it, to grieve. If you know a child going through grief, show them a little more kindness. Their behaviour might just be because they’re struggling to come to terms with that loss. #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #ChildrensGrief
Two years ago today the lovely @sarahward_photography took these photos ahead of Orlas 1st birthday…… I love these photos so much. Her cheeky little face coming through 🤍⭐️ #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief
BABY ORLA I don’t think we’ve shared many photos of Orla pre cancer - and I guess why would we? We set up this page to document her journey, but now it’s about her and remembering her and who she was. We’re approaching Orla’s 3rd birthday very soon. It’s going to be a difficult time I know it. Last year she spent her birthday in GOSH and I couldn’t even see her as I too was unwell. But it got me looking at baby pictures of her. Gosh she was so happy and smiley. Just the happiest little thing through and through. Even back then she was making us laugh! Here’s some beautiful pictures of her between 0-5 months old. Miss you every day beautiful girl 💜 #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief
A year go yesterday, Orla started chemotherapy. It was the beginning of so many things. So many things we would have to learn and that Orla would have to go through. Learning and understanding what anti sickness meds she needed, seeing the signs of when she would need a blood transfusion or platelets. So many new things to learn that would soon become our norm. This first round went okay, we were in for 7 days and the main side effect to begin with was the sickness. We’d been warned about mucositis and boy did we know it when it hit….. For us that was by far one of the hardest things to see her suffer with her treatment. The picture of Orla looking at her nurse was when the very chemotherapy went up, I burst in tears in that moment thinking ‘what the hell are we doing to our baby?!’ ‘We’re poisoning her’ but without it she wouldn’t have stood a chance……. #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief
MEMORY PEBBLES & SIGNS We spent the last two days at @chessingtonworldofadventures with some of our close friends. We had such a lovely time whilst constantly talking about Orla and what she would be saying and what she would want to do. We’d decided that when we visit places and countries out of the norm, we would leave a memory pebble with Orla’s details so she’s been with us on that trip. We took a pebble with us and carried it around the 2 days waiting to find the ‘right place’. We decided yesterday that unless there was somewhere near the animals that felt right then we’d go back to the hotel and leave it near the wishing fountain. We left the park mid afternoon as it started to rain quite heavy and headed to the hotel. Adam put the pebble at the top of the fountain but when on the ground it wasn’t visible so we decided to move it. Just as Adam had moved the pebble to its new spot and stepped away, a bird (we’re not sure whether it was a rare yellow breasted robin or something else) landed next to the pebble, and then the brightest double rainbow appeared in that moment! It was the most surreal feeling. We really felt like Orla had said ‘yep that’s the spot I want it in’ It felt like the strongest sign she was with us. The rain completely cleared and it was bright sunshine again. Looking back at the pictures, there’s the strangest beam of light coming down to us and the wishing well……. We know Orla was with us 💜⭐️🌈 #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief
THE START OF CHEMO…. One year ago today, myself and Orla went into Lion Ward at GOSH for what we thought was as the start of her chemo journey. As it was half term, we all went up as a family of 5, grabbed some lunch before Adam and the girls got us settled into our new room. We were there around 2pm and after an hour or so, they headed home and left me and Orla. No one had been in to see us and a couple of times I asked what was happening and when would she be starting chemotherapy. After 2 hours, Orla’s specialist nurse and one of the consultants came in and I instantly knew something wasn’t right. They sat down and proceeded to tell me that the molecular results from the tumour had come back and they weren’t what they thought they’d be. Her tumour was showing one of the rare mutations - MYCN amplification and her treatment plan needed to be changed from standard risk to high risk. We’d only just got our heads around the treatment plan and now it was changing. It was just another blow - thinking things couldn’t get any worse and they had. What did this mutation mean? Did it mean her prognosis was worse than originally thought? Months down the line they never knew what it meant as they’d been no other cases with her exact type. So they were over treating in the hope it didn’t mean anything…… we’ll never know for sure now if it’s what made her relapse so quickly and so aggressively. I called Adam and he turned around to come back and get us as we now wouldn’t be starting treatment until 28th October….. #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief
PUMPKIN PICKING 🎃 Today has been another weird one. We went to Aldenham Country Park with some of our friends and the last time we went there was Half term 2 years ago for Halloween. 🎃 I constantly feel this sadness of the memories we had, and the knowing Orla won’t get to have these experiences again. The fact she should be with us making these memories. She never really got to experience Halloween. It’s hard seeing little toddlers, it’s a constant reminder that Orla isn’t here. This time of year is hard for so many reasons and will always be hard because not only was it when Orla was diagnosed, it’s when she started chemotherapy, but also her birthday and Christmas are soon. I want to enjoy this time of year for the girls, but it’s now just filled with sadness….. Pictures 1-4 - October 2021 Pictures 5-10 - Today #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief
FUNDRAISING Over the past month or so, many people have kindly chosen to fundraise in Orla’s memory. We are beyond proud and so appreciative of everyone for helping out in any way they can. Whether you’ve fundraised or donated, every single penny counts. Myself and Adam are working with someone at GOSH charity to work out where we would like the funds raised in Orla’s memory to be allocated within the new cancer centre. We’ll do another post as and when we have more information but I can tell you that whatever we raise for GOSH will go towards funding something close to our hearts that meant something to us when we were in hospital. We’re only just at the beginning and we have set our target high, so the next few years we’ll be doing a few things in Orla’s memory. More will be revealed once we have all the details. A special thank you to the following people who have either already completed a fundraising challenge or are in the process of doing one: @shelleymorgan84 @jilliehugo @zeeceebeauty @togetherdental_broxbourne Cassie Burke @fayebritten Broxbourne Primary School Freddie & Fynn Tuckwell Beverly Gibbs @littleoz10 We know there are more people that are planning on doing challenges in Orla’s memory and for her fund and it honestly means the world 🌍 If there is anyone that would like to do anything, please let us know as we have a special link to create fundraising pages in Orla’s name and fund. Thank you again 💜⭐️ #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #CancerMum #OncologyMum #Momcologist #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief
ITS CANCER…… One year ago today, we were given the news that Orla’s tumour was malignant - meaning it was cancer! We had hoped and prayed it was just a benign tumour, and had tried to not let ourselves go down a rabbit hole with the what ifs but it wasn’t to be. Cancer was once again affecting our family. We were told she had medulloblastoma which is a grade 4 brain tumour, meaning it’s the worst kind. It’s aggressive and fast growing. The pathology and histology results revealed her subtype was SHH with desmoplastic cells. Based on this she was standard/low risk and it was a very favourable to treatment tumour. We still had to wait for the molecular results but based on what they already knew, they didn’t expect anything bad to come back from those as it’s so rarely seen. We were given an abundance of information about the treatment she needed, the statistics and possibilities and other surgeries she will need. Over the next week she had another surgery to fit the ommaya reservoir which was needed for treatment, as well as having a central line inserted into her chest. She was still recovering from the first surgery and the PFS (posterior fossa syndrome). She still couldn’t talk, barely walk and was only just about managing some mashed up banana. Recovery was hard but Orla never let anything stop her …… #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #CancerMum #OncologyMum #Momcologist #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief
TUMOUR REMOVAL WARNING ‼️ GRAPHIC IMAGES On 4th October 2022, Orla had her tumour resection. She went down just after 2pm and came back up just after 10pm. It was an agonising 10 hour operation. She had a full tumour resection, 100% was removed. This was with the help of an intra-operative MRI where they have a scanner in theatre and can put the patient in mid op to check alls been taken - it showed Orla still had a tiny piece not visible to the eye so they were able to safely make sure it was all removed. When she came up she was in so much pain the nurses couldn’t get her settled - she had to have so much morphine that night. We barely slept as we were just so scared. Her sats kept dropping and she needed a little oxygen overnight but it was temporary. The following day she was very sleepy and barely woke. Later that day the nurses said we could get her out of bed for a cuddle. We were so scared to hold her, not wanting to hurt her, not knowing where best to hold her. She was still attached to all the monitors and still had the EVD in for a few more days until they could see that with the tumour gone, the fluid was draining properly again. The next few days were hard. She could barely sit up and when she did she was wobbly. She couldn’t eat solids as she kept choking, and when she drank anything it came out of her nose! She was also experiencing symptoms which are relate to Posterior Fossa syndrome (PFS). Post op alot of patients experience it. She was mute for a week or so - for some it can last months. She also couldn’t stand or walk unaided. We basically had to get her to re learn everything again. On 7th October she had the EVD and the bandage removed from her head. It was so horrible to see but so nice when it was done as it meant she wasn’t constantly hooked up to machines anymore like she had been for over a week. #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #CancerMum #OncologyMum #Momcologist #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief
RECOVERING FROM THE FIRST OP….. The day after the emergency operation to relieve the pressure and to fit the EVD (External Ventricular Device), Orla was very out of it and slept most of the day. She couldn’t even sit up because of the anaesthetic and pain. I think towards the evening on 30th September we both had her out of bed to cuddle her in the chair. I remember us both being so scared to hold her, not wanting to hurt her. We always needed a nurse to help as the drain is on a long wire and has a bag it drains into and it had to constantly be level with her head so if she sat up, it needed clamping and moving, and then when she laid back down it would have to be clamped and re-levelled. They even use a spirit level to check it’s correct! The following day she was up and demanded toast at 530am! We were in disbelief as she hadn’t eaten in weeks! From then on it was toast and rich tea biscuit galore! It was like she woke up like the old Orla, wanting to eat and being cheeky!! Our parents, and Ava and Poppy came to see her at this point, which was really hard trying not to scare them and tell them too much but make them aware she has something in her head and needs an op. We spent these days getting Orla strong, playing at her bedside and letting her watch as much frozen as she wanted. The night before the tumour resection, we had so many beautiful moments with her, messing around with her teddies and just holding hands. It was so special as we just didn’t know what the next day held before she went into a 10 hour operation……. #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #CancerMum #OncologyMum #Momcologist #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief
DIAGNOSIS DAY One year ago today, our lives changed forever when we were given the devastating news our beautiful Orla had fluid and a mass on her brain! 😢 On 29th September 22, Orla’s vitals were dropping significantly and she wasn’t in a good way. She was hooked up to ECG leads monitoring her heart as her heart rate was in the 60s, she had an ECHO at her bedside to see if something else was going on. They then ordered a CT scan to rule out anything with the brain, given her low heart rate and high blood pressure - these together are an indication of cranial pressure. It was just before 5pm when I was sitting with Orla whilst Adam was on a work call, when our soon to be specialist nurse asked me to get Adam as she needed to talk to us. She then grabbed my hand and said ‘we’re going to get Orla through this’. I knew then that something was wrong…. CONTINUED IN POST…….. #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #Sepsis #GOSH #CancerMum #OncologyMum #Momcologist #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #ChildhoodCancerAwarenessMonth
NEARING DIAGNOSIS…. By now, we’d been in our local hospital 7 days. In this time, Orla had a few X-rays on her abdomen, an ultrasound and also a barium study. We had started feeding her Neocate junior via her NG tube (because of her dairy allergy) given that she’d had a big ‘clear out’ after an X-ray showed she was severely constipated and because she wasn’t eating anything orally we needed to get calories into her! However after feeding during the day in little and often amounts, she projectiled the whole lot at night. She did this for 2 days consecutively so we then went back to just feeding her dioralyte to keep her fluids up - this became a common theme throughout treatment. When she had the ultrasound and barium study, something had shown up pointing at a gut motility problem, and given PAH had exhausted all options by now and she wasn’t getting better, they agreed she needed to be seen be a gastroenterologist immediately. The hospital for paediatric gastroenterology is The Royal London Hospital in Whitechapel London so her case was put to them and we were waiting on them accepting her. After a day or two she was finally accepted and we just had to wait for a bed to become available. Up until now, all her vitals (heart rate, SPO2 and blood pressure) had all been good but on 28th September, things had started to change. Her blood pressure was up and her rate sitting in the low 70s. Normal heart rate for her age is 80-130bpm and hers generally sat around 110-120bpm but it had dropped quite a bit. This then leads into diagnosis day which I will be posting about in a few days. WARNING❗️ There are some graphic photos! #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #CancerMum #OncologyMum #Momcologist #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #ChildhoodCancerAwarenessMonth
🎗️WHEN IT STARTED….. 🎗️ Today, one year ago, was when it all really started. We were admitted to our local hospital after me pushing and pushing saying the sickness was out of control and there must be an explanation for it because she didn’t have a bug. We spent a few hours in a&e before we then went to the children’s ward and into a private room. Until they could confirm she wasn’t infectious they kept us in there. She had a cannula put in to her hand for bloods and IV meds/fluids. We remember at the time thinking she was so brave as she didn’t cry or put up a fuss, however it was really because she was in so much pain and was so lethargic that she just didn’t care! Within a day or so of being in there, they had to put an NG tube through her nose and into her stomach. She was barely taking anything orally and we couldn’t get meds and fluids into her. It was so traumatic that first time. We cried at the thought of her having an NG tube and hurting our baby. She needed it though as she was so severely constipated. It was the only way to get a large volume of fluid with movicol (a stool softener/laxative) into her. The 10 days we were in there she was pretty much laying down on her front - head down and legs tucked up in a ball. We genuinely thought with all of the symptoms it was gastric related. I’ll post more on this in a few days. It’s absolutely heartbreaking to look back these pictures and see how much pain she must have been in and how much her head must of hurt 😢💔 #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #CancerMum #OncologyMum #Momcologist #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #ChildhoodCancerAwarenessMonth
TIME For Orla, time will stand still, but keep moving forward for us. It’s a very strange thing to get your head around and accept and I don’t think we ever will. Over the last year it felt like we had an abundance of time at certain points, like when we were stuck in a small hospital room for weeks surrounded by beeping machines and a very poorly child, or watching Monsters Inc for the 13th time that day. But at the same time, it also felt like we had very little of it. Especially towards the end when we found out Orla had relapsed. What we wouldn’t give to get just one second of that precious time to see you smile, or hear you ask for “toast”, or to hear those beautiful words “Mum Mum, Dadddeeee, Waa Waa (Ava), Bubba (Poppy), and Boo Boo (Bella the cat). But life is cruel, and time will stand still for Orla. She will never get to experience a lot of the things we take for granted: - That feeling of excitement when opening Christmas and Birthday presents - Your first day at school - Your first swimming lesson - Trying Pizza for the first time (with dairy free cheese of course) - Learning to swim - Starting secondary school and the excitement of making new friends - Finding yourself a boyfriend.. obviously only when over the age of 30 and after a full background check - Getting married, enjoying your first dance and looking angelic in a beautiful white dress - Looking into the eyes of your first born child and feeling the kind of love for someone that you never thought was possible We will think of these things and more every day and imagine the positive impact you would have had on this world. Time will keep moving for us, but we will see you again our beautiful girl. We Love You. We Miss You. 💜🤍⭐️🪽 #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #CancerMum #OncologyMum #Momcologist #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #ChildhoodCancerAwarenessMonth
🤍⭐️🤍 More pictures taken a year ago today. Orla had been feeling unwell for around 2 weeks by now. She was being sick, not really eating and was very constipated. She was also off balance and starting to become very lethargic. By this point, we’d been to the GP, had one lot of bloods done and also been to a private paediatrician we’d seen when she was a baby. He ordered more bloods which we had done a few days from this. We’d also been to a&e once because of the vomiting. This particular day she’d seemed better - we went to the supermarket and she picked up this ball and which she was adamant on having! It put a much needed smile on her face. On my camera roll, this picture along with the one of her eating toast (that was the only thing we could get her to eat occasionally) were the last normal pictures I have before we were admitted to hospital. The next ones I have and will post in a few days, are us in our local hospital. Diagnosis day is looming…… I never in a million years thought we wouldn’t get to the one year diagnosis and she wasn’t here 😢 Let’s keep spreading awareness about brain tumours and childhood cancer and get more people to sign this petition (link to it on Orla’s LinkTree in bio). MORE NEEDS TO BE DONE!! #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #Sepsis #GOSH #CancerMum #OncologyMum #Momcologist #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #ChildhoodCancerAwarenessMonth
⭐️🪽ONE MONTH SINCE HEAVEN GAINED YOU 🪽⭐️ One month has gone by since you took your last breath 😢 It feels like so much has happened in that month without you. Not a day goes passed where we don’t miss seeing your gorgeous face and infectious smile. Last week we laid you to rest in your beautiful garden 🪴 🌺🌸 Having somewhere to visit you everyday is some comfort but never enough that makes us stop missing you. Morning routines aren’t the same. We miss hearing your door open and then your little bald head appear at the end of our bed with a little giggle whilst you hold your pillow, muslin and bear bear blanket. Night times are when it hits me hard. I feel like during the day I keep myself busy for the most part - yes there are moments when I cry but it’s at night when I feel it most. Looking at pictures and videos of you. How could something this cruel happen to someone so pure and so full of life? It just isn’t fair. I like to think you are happily playing in your frozen dress, singing and dancing to all of your favourite songs and wiggling your bum as you dance 🌟 “If I had a star for every time I thought of you, I would be holding the night sky in my hands” #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #SepsisSurvivor #GOSH #CancerMum #OncologyMum #Momcologist #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief
REST IN PEACE BABY GIRL Yesterday, we laid our beautiful baby girl Orla to rest 😢 All week we have been making her garden look beautiful with flowers ready for her and now she can be at peace. I still can’t quite get my head around it all, it doesn’t seem real. But I’m happy we now have a place we can visit her everyday. We still need to sort her plaque but have left some stones with her name on. Ava and Poppy let off a star ⭐️ balloon 🎈 each so Orla can catch it in heaven 🤍🪽 We love and miss you so so much Orla 🤍💜🪽⭐️ #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #CancerMum #OncologyMum #RelapsedCancer #RelapsedMedulloblastoma #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #ChildhoodCancerAwarenessMonth
HAVEN HOUSE HOSPICE When Orla relapsed & there was no longer a cure, we were under the palliative care team at GOSH as well as Haven House Hospice as it was our nearest Children’s Hospice. When we left GOSH we wanted to stay at home as long as possible to make memories with Orla but she became unwell very quickly. We started having support at home daily from Haven House before we then moved to the hospice in Orla’s final days. The hospice has a separate family flat within the hospice for end of life care. Being in this flat meant we could all be together with Orla, whilst having 24/7 care. It took the pressure off of us having to be her nurse/carer as well as parent. During the summer holidays they have different events & activities for children staying at the hospice & their families. Whilst there, ava and poppy got to take part in music therapy, yoga, woodland trails, outdoor arts & crafts as well as watching some of the shows they had on. This helped make it a positive experience for them whilst their baby sister was in her final days. We even got to take Orla outside in the sunshine and sit in the beautiful grounds. The staff supported us as a family and made sure we had everything we needed. We cannot express how deeply grateful we are to haven house for the care and compassion they showed us. The people that work here are truly special people. With that in mind, on 23rd September as a family, we’re taking on a mud run for haven house to raise money. Ava and Poppy are very excited to be doing this to support a place they know cared for their baby sister and also gave them lots of support too. They are a charity and need all of the support they can get, to help more families like ours. If you’d like to support us the link is on Orla’s LinkTree. I’ll also pop it on stories. As always, we are so grateful for everyone’s love and support 💜🤍 @havenhousech #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #CancerMum #OncologyMum #RelapsedCancer #RelapsedMedulloblastoma #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #ChildhoodCancerAwarenessMonth
GOING TO SCHOOL WITHOUT YOU Today our big girls went back to school. It was a day I have been dreading since Orla passed. Everything has happened over the school holidays. The last time I went to school on Friday 14th July, she was with me. It was when I knew something was wrong. Walks to school are down a beautiful river where Orla would love to stop and look at the ducks. When we got to school she would be out of the buggy running around with her big sisters, before she would then demand to walk back but then make me carry her. She would also have been starting pre-school this week 😢 Seeing all the children at school she would have been at pre-school with was hard. I feel like a part of my life has been ripped from me. Part of my purpose has gone. School walks and school will never feel the same again. You should be here, enjoying all the things a normal 2 year old does 💔 #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #CancerMum #OncologyMum #Momcologist #RelapsedCancer #RelapsedMedulloblastoma #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #ChildhoodCancerAwarenessMonth
✨MISSING YOU IS HARD✨ All I want is to hold you again. Hold you in my arms so tight and give you a kiss. Every day is a struggle being without you. How do I live knowing I’ll never see your face again? Orla’s relapse and passing happened so quick. To be honest we were so blindsided by it all. It wasn’t what we were expecting. Orla’s brain tumour sub type (medulloblastoma SHH) has a fairly good prognosis - 80% 5 year survival. However she had a mutation - MYCN amplification which hadn’t been seen on its own (without TP53) in her type. So she was overtreated and given high dose chemo. Under 3s with her type cannot have radiotherapy because of the horrific neurological effects. Her MRI in April was completely clear. Yet a week before her 3 monthly MRI in July she became off balance. On Sunday 16th July we woke and found she’d been sick in bed - this indicates cranial pressure. Right then we knew what this meant. We didn’t however expect it to be as bad as it was. We knew that most tumour relapses happen focally (in the same place) and can normally be operated on again. Orla had a metastatic relapse. It was on the opposite side of her brain and in her spine and was everywhere! It was diffused meaning there wasn’t one part they could remove. That’s when we knew there was no longer a cure and just about what time we could have with her. From that point, she lived only for just under 4 weeks 😢💔 I wish we could have saved you, this shouldn’t have happened to you. You hadn’t lived your life. #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #CancerMum #OncologyMum #Momcologist #RelapsedCancer #RelapsedMedulloblastoma #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #ChildhoodCancerAwarenessMonth
CHILDHOOD CANCER AWARENESS MONTH Today marks the beginning of #CCAM Everyday in the UK, 10 children or Young people are diagnosed with cancer. The highest incidence rates are in the under 5s. The most common forms of childhood cancers are brain & spinal cancers followed by leukaemia. Less than 1% of funding is spent on brain cancer despite it killing more children and young people under 40 than any other cancer. Around 240 children in the UK, aged 0-14 years, lose their lives to cancer every year, however because childhood cancer is “rare” it accounts for less than 1% of all cancer deaths in the UK. Because of this, pharmaceutical companies won’t invest to find kinder and better treatments as it doesn’t make them money. Adult cancers are more profitable for them! This needs to change! More funding is needed for research so more children can live and survive these horrible cancers. #GoGoldInSeptember for #CCAM Run, hold a bake sale, do a climb. Do anything you can to raise money for childhood cancers. #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #CancerMum #OncologyMum #Momcologist #RelapsedCancer #RelapsedMedulloblastoma #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #ChildhoodCancerAwarenessMonth
🤍✨WE’LL HOLD YOU IN OUR HEARTS FOREVER, UNTIL WE CAN HOLD YOU IN HEAVEN 🤍✨ Yesterday was a day we never wanted to come, one we never truly thought we’d be doing. It was hard, very hard. But I think we held it together and did Orla proud. Yes at times we broke, but were surrounded by so much love for Orla and for us. Orla’s big sisters did her proud and read the most beautiful poems. We have so many beautiful flowers for Orla. She would love them 💜💐 Thank you so much to everyone that spent the day with us, people from the girls school who lined the streets to pay their respects, and people who didn’t know her and sent us beautiful messages. We honestly can’t thank everyone enough for the love 💕 you have shown our family. We’re not really sure what we do now. It’s going to be hard going forward. But we do know we want to continue to raise awareness and fundraiser to help other children beat cancer. No family should have to go through what we have. Orla’s Brighter Future Fund has been set up with GOSH so we can raise money for the new cancer centre. Our plan is to fund something specific in Orla’s name that will help other families whilst staying in hospital. (Link in bio on Orla’s LinkTree) #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #CancerMum #OncologyMum #Momcologist #RelapsedCancer #RelapsedMedulloblastoma #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #BabyLoss
💔HELPLESS💔 This is one of the many feeling’s that we have had since Orla’s diagnosis last September. We have felt like spectators, powerless to influence the outcome of the many horrible things that Orla had to endure. This post is a longer one so it’s continued after the first picture. #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #CancerMum #OncologyMum #Momcologist #RelapsedCancer #RelapsedMedulloblastoma #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #BabyLoss
HAPPY MEMORIES ✨ During Orla’s treatment and diagnosis, we hadn’t shared many photos of her pre diagnosis. Not for any particular reason, I think we were just focussed on the situation we were in and sharing hers and our experiences whilst in and out of hospital. I recently got sent this picture from my brothers wedding, which was in July 2022, 2 months before we found out Orla had a brain tumour. We forget how young she was and how young she looked at the beginning of it all. She was only 21 months old when diagnosed. I just love everything about this photo. How happy and innocent she was, a care free life with no hospitals or nasty medications. Life was very simple then. Miss you so much baby girl 🤍 #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #SepsisSurvivor #GOSH #CancerMum #OncologyMum #Momcologist #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief #BabyLoss
One Week Without You One week has passed since we lost you 😢 Not a day goes passed where we don’t miss seeing your gorgeous face and infectious smile. I honestly don’t think we’ll ever be able to accept you are no longer here. This last week has felt indescribable. We’ve felt lost. Everything we do, we’ll be doing it for you baby girl. Everyone will know your story and who you are, your story will help others. You are our special shining bright star 🌟 #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #SepsisSurvivor #GOSH #CancerMum #OncologyMum #Momcologist #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief
🪽✨🤍✨🪽 Orla Olivia Tuckwell 2 Years, 8 Months and 1 Day Old Came into this world 11-12-2020 Took her last breath 12-8-2023 After the most courageous fight against Brain Cancer, our beautiful baby girl gained her angel wings on Saturday surrounded by her loving family, telling her how much we loved her and that she will always be part of us. There are no words to convey how we are feeling right now, but when you lose a child, a piece of you dies and you seriously question how you can carry on without them. Orla was the most amazing little human being. People who met her would be magnetised to her infectious cheeky laugh and smile. She was a beautiful, caring and bossy little lady. There was no messing with her, she would tell you what she wanted but at the same time be so gentle, caring and loving. Over the past 11 months, Orla has shown us all what real strength and courage really is. She never complained. If she didn’t feel well she rested, when she felt better she would be up playing, dancing and watching a copious amount of Peppa Pig. We will honour our beautiful girl by trying to match her courage and determination every single day. She will always be the brightest star 🌟 in the sky. #Cancer #ChildhoodCancer #ChildrenWithCancer #KidsWithCancer #BrainTumour #BrainTumourAwareness #Medulloblastoma #SepsisSurvivor #GOSH #CancerMum #OncologyMum #Momcologist #RelapsedCancer #RelapsedMedulloblastoma #CancerRelapse #Bereavement #GrievingParents #ChildLoss #GriefSupport #SurvivingGrief
Today we met with Anthony’s ophthalmologist for his routine eye check-up. These appointments are crucial because not only can an eye exam help detect brain tumors or swelling in the brain (seen with swelling or pressure of the optic nerve in the eye) even sooner than detected on a MRI but also monitor for problems that may arise. A person who undergoes chemo and/or radiation may experience dry eyes, eye irritation, excessive eye tearing, eye infections, cataracts, visual field defects, bleeding or changes in their prescription if they already wear glasses. Radiation to the head though puts a person at additional risks which include double vision, optic nerve swelling and/or partial vision loss. With Medulloblastoma one of the symptoms you look out for is changes in vision, especially double vision. When he was first diagnosed he had pressure on his optic nerve from the swelling in his ventricles due to the increase CSF. AJ has never previously had double vision until last year when he relapsed. It has progressively gotten a bit worse with some deviation and noted squinting. During todays exam is was noted he has left 6th nerve palsy which occurs when the cranial nerve is damaged or doesn't work right, which can be a result of all of the trauma his brain has endured. This causes problems with eye movement. We will be back to have a visual field test done which can further assess problems. 👓 The fight is never over. 🙏🏻