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Help support Cherelle & her whanau on their haerenga with Miss Ida-Litia to kick Burkitt Lymphoma in the arse!

  • Wednesday June 14th

      15 June 2023
    Posted by: Sione Tualau Veatupu
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    Today marks week 8 in starship

    Ida has had 8 lots of cytarabine and 4 lots of etoposide and another 2 lots through her spine on Monday (chemo meds).

    This chemo has been making her really nauseous and super tired. She’s only been awake a couple of hours in total the past 2 days.

    Lastnight she also had fevers all throughout the night, her fevers have settled abit today though.

    At least when she’s sleeping her body is resting and healing. One more day of chemo āpōpō and then abit of a bigger break till the next lot is due and also a long awaited visit from our boys that we can’t wait for.

    Also how cool is our Fairhaven kura? Another fundraiser for Ida and our whānau on Friday.

    Pikitia tuarua is a little snack gift box Ida put together for our nurses. She’s pretty cool our girl, still thinking of others while she goes through it. Ultimate gratitude to our nurses for always going above and beyond and our doctors as well.

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  • Round 4

      15 June 2023
    Posted by: Sione Tualau Veatupu
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    Back into hohipera yesterday and straight back into her 4th cycle.

    This cycle is called RCYVE Mtx 1

    She had 3 lots of Chemo meds yesterday and 5 lots today. 2 of her chemo were done through her spine in theatre when she got her lumbar puncture done and also had her dressings changed as well.

    She’s been pretty tired since theatre and has just spiked a fever. She’s ok, just having a moe so her body can continue to heal.

    This cycle length is abit shorter and we’re hoping for minimal side effects. 🤞🏽She’s been feeling abit queasy today but hopefully all her anti nausea meds keep her on top of it.

    Her appetite is slowly coming back too she’s up to eating about 1/3 of what she used to as well as her ng feed.

    Pic is of her meds i had to give her while we were allowed out. She’s on a few extra ones in here too. Super Grateful I don’t have to administer the early morning ones while we’re in here and just makes me appreciate what our nurses do even more.

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  • Update

      15 June 2023
    Posted by: Sione Tualau Veatupu

    Update for the week. Our girl has been healing before her next round of treatment. Neutrophils are slowly building to help her heal her side effects and when they’re ready to go she’ll be back into treatment.

    We’ve been allowed out on ward leave as well and it’s been the most magical couple days. Our baby’s whare tapawhā has been rejuvenated and we’re ready to smash this next round. Our ward leave has definitely been eventful. Lime bike and scooter falls 🤦🏽‍♀️ zoo trip, city lights and out of the hospital.

    Into round 4 of treatment coming up.

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  • Days 41-44

      15 June 2023
    Posted by: Sione Tualau Veatupu

    Days 41-44

    It’s been a week of celebrating the small wins.

    Our girl has had grade 3 mucositis for over a week and no appetite for nearly two. Her NG Tube has been helping her tinana get the nutrients it needs.

    She’s been hungry since Tuesday but the mucositis has made it too mamae for her to swallow even her saliva. But tonight she managed 1/4 toastie, some popsicle slushy and just juice 🥹 to say that I wanna cry happy tears is an understatement.

    Our boys went home on day 42 which marked 6weeks in starship.

    Day 43 our girl went for surgery where they flushed her sinuses and checked that she didn’t have a fungal infection she was pretty beat up and very mamae afterwards and slept most of the day afterwards and needed platelet transfusions to help with the nose bleeds and other meds as well.

    Day 44 she woke up happy and had a little pep in her step. We joined the Toitoi Manawa zui and tuned in to watch our big boy perform at his assembly which made our morning and as I said above she wasn’t too scared to try some kai and actual eat.

    Small wins.

    Hoping for her neutrophils to come in soon so she can start healing even more before the next cycle of treatment.

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  • Days 38-40

      15 June 2023
    Posted by: Sione Tualau Veatupu

    Days 38-40

    Our girl was put on a pain pump as she was becoming mamae in quite a few places. She started with morphine then it was switched to oxycedene cos the morphine was making her itch. She hadn’t had a previous reaction cos she didn’t need it as much as she did over the weekend it was then changed to oxycodene.

    Saturday night our boys came up and it’s safe to say our girl missed her brothers and was so happy to see them.

    Sunday things took abit of a turn and she was vomiting all day while dad looked after her, in my professional opinion I think her feed rate was too fast and her body couldn’t take the excess. Even after vomiting all day she still managed to gain 600g which is huge. We got her feed rate turned down and today was a much better day. Not as mamae barely vomiting but just abit of a sore puku and abit mamae now and then. CT scan this arvo and getting the line in for that was abit of a mish this morning so mama had to take one for the team and remind our girl how quick it is and that her Dr. Is the literal best and faster at them. After a lot of convincing and gas our girl ended up laughing after it was put in because of how scared she was prior. 🫠

    CT was all done and all in all in was a better day then yesterday so we’re celebrating the small wins and remaining grateful for them.

    Also a platelet transfusion today as well that’ll hopefully perk our girl up abit. No chemo this week her neutrophils need to build back up then we’re in for another round.

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  • Day 37 & 38

      15 June 2023
    Posted by: Sione Tualau Veatupu

    Day 37/38

    Lumbar Puncture, Intrathecal chemo and a chest X-ray and our siones went home yesterday.

    Our girl has no neutrophils at the moment which is to be expected after treatment cycles this round she’s had more side effects so she’s been hooked up to a pain pump to help with instant relief.

    She’s coping well with her ng tube and has had feeds going through as she’s still barely eating. She’s down to 39.3kg at the moment, for context when she had her rugby weigh in at the end of feb she was 49kg and stressing she’d be over the weight for her age group.

    This evening her Koro, my Papa has come up and it’s brightened both of us up abit. X-ray results came back this morning and she has a pneumonia on her left lung but we’re in the best place to get her treated.

    Pain pump and her regular pain meds and antibiotics are all helping. Once her neutrophils start building again she’ll have more to fight with as well.

    One day at a time

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  • May 25th update

      15 June 2023
    Posted by: Sione Tualau Veatupu
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    Where to start…we’d left it on a pretty positive note. But it’s been really hard to write since then. Our girl has gone through some rough physical and mental challenges since our last post.

    After Friday’s chemo and lumbar puncture, she’s lost her appetite since Saturday and maybe had 10nibbles of kai since then she’s also lost over 3kg because of the energy her body uses during her chemo.

    So because of this we got an NG tube inserted so we can get some ‘feeds’ through her. She was scared and rightfully so but we tried to focus on the positives of her having it - meds being able to go through it, no more tablets because she was getting over taking nearly 20pills a day on top of her IV meds.

    After theatre on Monday things became even harder for our girl. The tube size is huge and making her sore and uncomfortable. She’s also had a few other side effects.

    Today was slightly better than yesterday she’s not scared to drink with her tube in anymore and was able to eat as well, both things she was scared would hurt so we took it one sip and bite at a time. It’s crazy the things you celebrate and are proud of when your baby is healing and fighting.

    A feed has started through her NG tube tonight as well so hopefully she’ll wake up with a little more energy.

    She’s still so strong. The nurses and Docs have been in awe of her strength and attitude through all the ups and downs.

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  • 1 month in

      15 June 2023
    Posted by: Sione Tualau Veatupu

    Today marks a whole month Miss Ida has been in here at starship. April 19th we got a diagnosis.

    Things have been going as well as can be. Our girl has had about 8 lots of chemo meds yesterday and today and a lumbar puncture and Intrathecal chemo today as well.

    The mental load and being away from home is starting to wear on us, emotions have been up and down but we’ve had way more good moments then bad. We also hold on to and focus on the fact that her cancer is reducing and we’re in the right place now. We get to see our Siones in two more sleeps and we can’t wait.

    The pikitia is her beads so far 133 beads of courage accumulated in a month so far. My princess is amazing in all senses of the word.

    Enjoy your weekend e te whānau be safe, tell those you love that you love them every chance you get and squeeze them that bit tighter. Be patient with each other. Life is too short.

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  • Days 26/27 and 28

      15 June 2023
    Posted by: Sione Tualau Veatupu

    Day 26

    Treatment protocol has started again.

    1 round of chemo meds yesterday a break today and more lots of chemo and a trip to theatre on Wednesday and Thursday.

    Idas cough was settling but was abit rough going to sleep lastnight, not sure if the chemo triggered it more.

    Back into it though and back into beating this some more.

    Tuesday Day 27

    Was a pretty quiet day. Miss went for a chest X-ray to check her cough so she got to go off ward for a little bit. We were tempted to run home with her attached to her pumps 🙃

    Day 28 Wednesday

    Marked 4 weeks of us being in starship. Been. Ride so far. Another 3 lots of chemo meds yesterday and steroids. Have been able to keep our girls weight going up steadily as well cos she’s eating real well so she’s managing to avoid an NG tube. But will most likely get it done when she has surgery next Thursday just incase she’s not feeling the best and her body weight starts dropping and she develops what’s called chemo mouth, where they get ulcers in their waha. Managing to keep that at bay so far as well with regular salt rinses and teeth brushing. Hoping her side effects keep remaining minimal. 🤞🏽

    Nil by mouth from 2am and a lumbar puncture and Intrathecal chemo due today for our Miss.

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  • Update on payee of Givealittle page - 25/05/2023

      25 May 2023
    Posted by: Givealittle

    The funds are now being paid to Sione Tualau Veatupu as requested by Cherelle Veatupu.

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  • Starship Hospital Update

      16 May 2023
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    Day 26

    Treatment protocol has started again.

    1 round of chemo meds yesterday a break today and more lots of chemo and a trip to theatre on Wednesday and Thursday.

    Idas cough was settling but was abit rough going to sleep lastnight, not sure if the chemo triggered it more.

    Back into it though and back into beating this some more.

    The photo is a calendar of this treatment protocol.

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  • Starship Hospital Update

      16 May 2023
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    Day 22 - day 25

    Been awhile since we’ve updated. It’s been a lot of the same.

    Miss Idas fever has stabilised since yesterday, 2 types of antibiotics were going through her line and was then dropped back to 1.

    We’ve both been extra mokemoke this week, when it rains here being inside is a little easier but the sunny days we’ve been having have made us miss home that little bit more than usual.

    Doctors are waiting for Idas white blood count to come up abit then they’ll start her next round of the same protocol RCOPADM - 1 is what it’s called.

    She’ll start rituximab which is a chemo drug probably tomorrow and once she’s back in theatre doing a lumbar puncture and IT chemo she’ll also be getting an NG Tube. Much easier to do with her sleeping and now awake.

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  • Starship Hospital Update

      16 May 2023
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    Day 20/21

    Hard night lastnight. Our girls fever went riight back to over 40 most of the night, blood pressure dropped and her heart rate ended up hitting 200bpm an extra antibiotic was added more fluids and our girl was hooked up to an ecg most of the night, docs and PICU nurses coming in throughout the night and a restless sleep in tow.

    Gratefully after the fluids started her heart rate started to drop and her blood pressure started coming back to normal. Neutropenic episode it was called, her first one.

    Today has been heaps better and her temp has been normal.

    Next step for our girl is trying to get an NG tube inserted so she can have extra ‘feeds’ through it to help get her weight back up so she can keep strong during her mauiuitanga.

    Still navigating this haerenga. Learning, advocating and trying to allow this girl to have autonomy over her Tinana whilst finding the balance with everything.

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  • Starship Hospital Update

      16 May 2023
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    Day 20

    The last 24 hours have been abit of a rollercoaster.

    Our girls white blood cell count has dropped a lot (to be expected with chemo). She also spiked a high fever overnight which can be really dangerous. Highest it got today was 39.7.

    She’s hooked back up to her pumps and is on IV antibiotics.

    She’s been sleeping most of the day and is chesty a stark contrast to her Over the weekend and yesterday, she was Spritely playing with her brothers and doing most things and eating everything I made. Hei aha this is the nature of the beast.

    Her fever has come down finally and she still manages to smile when she’s awake. Our baby has got this.

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  • Starship Hospital Update

      16 May 2023
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    Day 17&18

    Started off with me gripping the wheelchair as tight as i could so that Miss didn’t fall out on the steep downhills as we walked to Grafton mews 🙃

    Then our boys came and I was in full mama mode for the weekend and we all soaked up being together. Miss Ida had to go back on ward at night times but was straight back in the mornings. We soaked up all the time together right to the end. Lots of kai lots of smiles and lots of QT.

    Day 19

    Another lumbar puncture and Intrathecal chemo. A heavier day mentally and with a few tears from mostly me.

    Thank you all for coming along for the haerenga. Our girl has got this and we appreciate all the tautoko.

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  • Starship Hospital Update

      16 May 2023
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    Day 15

    Our girls pumps got detached on Wednesday evening and she was able to move freely.

    Another lumbar puncture and Intrathecal chemo and 1am scramble cos she had to be nil by mouth by 2am.

    She woke well from these procedures then we were blessed with some really cool news that Miss Ida is allowed on ward leave. So a phone call to our boys and a change of plans (travelling up Saturday after sons game instead of Sunday) and this Mamas Mother’s Day wish came a week early. All 5 of us being able to be together under one roof again. 🥹we’re not sure when the next time will be but we’re gonna make the most of it and just enjoy each others presence.

    Day 15

    Our girls first day outside the ward since coming here and we went over to AKL hospital for coffee and subway and I showed her around starship, was a little overwhelming for her at first but she settled in the second time. She’s now requested we head there at breky time āpōpō as well lol. Also had a short but sweet visit with our mozzy guzzys/aunties and another home cooked dinner delivery from my cousin as well that we smashed.

    So much gratitude for everything and everyone and pride in my warrior princess. Plan for the weekend is to feed her up so we can pack some meat on her so that her Tinana has extra energy to fight this ngāngara. Menu requests so far are burgers and chips with garlic sauce. Steak and chips with garlic sauce and flapjacks.

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  • Starship Hospital Update

      5 May 2023

    Day 13

    Had a whānau breky in the kitchen, mum stayed with baby and Dad with miss Ida on Monday night. More chemo and hydration then Mum hung out with baby sione at Ronald McDonald and Miss Ida hung out with Dad for the arvo.

    Day 14

    Our boys left back home 🥲and was a quiet day meds wise. Cool thing happened too, she got all her pumps taken off her YAAAY. Her Hickman line is still in but she’s not attached to any machines for the first time in two weeks. 😁 I’ll be up making midnight scramble again cos she’s Nil By Mouth at 2am. But we’re celebrating hopefully a pretty peaceful night with not too many toilet trips 🤞🏽

    Counting the sleeps till they’re back.

    Pic is of a Hickman Line which is what Ida has in, that way all her meds can be put through there without her having to be poked and prodded all the time.

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  • Starship Hospital Update

      5 May 2023

    Day 10

    Lots of chemo meds and fluids administered.

    Day 11

    More chemo meds and our Siones arrived, we looked forward to it all day and we’re glad when they got here safely. 😊

    Day 12

    Nil by mouth from 7am so up at 6am to have scrambled eggs on toast.

    Arvo theatre list where she had a lumbar puncture and intrathecal chemo, then more chemo meds once she was back on ward.

    The odd sore puku from her chemo meds but so far minimal side effects. Hoping it continues for our girl.

    Again she remains a super kotiro and has been taking it all in her stride she really truly is amazing. I’ll forever be in awe of her.

    In these 12 days she’s had

    4 Intrathecal chemos

    4 lumbar punctures and

    2 Bone marrow aspirations

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  • Starship Hospital Update

      30 April 2023
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    Day 8&9

    Pretty good days so far. Managing to get on top of her mamae before it gets too painful. Day 9 we finally moved rooms and are so much happier, having natural light and a city view day and night. In the space of 9 days our girl has had in 3 Lumbar Punctures, 2 Bone Marrow aspirations, 2 CT scans, 1 MRI, 3 lots of chemo through her spine, 7 lots of chemo medicines through her lines and daily steroids and we’ve also met our favourite nurses so far. As per usual she’s been fucken amazing through it all. 😊🙌🏽

    The yellow medicine going through her line in the first pic is one of her chemo meds the rest are fluids to make sure her kidneys keep doing there thang.

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  • Starship Hospital Update

      30 April 2023
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    Day 8 update with our darling

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  • Starship Hospital Update

      30 April 2023
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    Day 7 update with our darling

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  • Starship Hospital Update

      26 April 2023
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    Days 5 & 6 update with our baby

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  • Starship Hospital Update

      24 April 2023
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    Day 4. Bittersweet day today. I think weekends will be a lot less intense then during the week. Pain is lessening, she’s a little nauseous but otherwise handling everything like the warrior princess she is. Nil by mouth from 7am āpōpō lumbar puncture sometime in the arvo and chemo as well. Thank you again to everyone for all the manaaki and tautoko.

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  • Starship Hospital Update

      23 April 2023
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    Day Three with our baby at Starship

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  • Starship Hospital

      23 April 2023
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    Day Two with our girl.

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  • Starship Hospital

      23 April 2023
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    Day One for our baby at Starship Hospital.

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