Back to page

Help 3yo Tobi with his Brain tumour fight

  • 6 months post treatment

      26 May 2018
    Main image

    6 months after finishing treatment Tobis hair has grown back slowly but its thick, full and curly!

    His 2nd post MRI was clear!

    He has started his re-immunization schedule (treatment wipes all immunity including past immunizations)

    He is building confidence and beginning to try knew adventurous things in the playground.

    Tobi is involved with lots of different child development services now.

    We still have a lot of trouble with emotional breakdowns or tantrums, talking and communication, his balance, his appetite and low immunity to everyday bugs.

    We are currently saving for a car as attending frequent hospital appointments has become expensive and alot harder in the cold months with having to catch a train and 2 buses (that's only one way)

    Tobi is currently on a 1 month trial of being tube free. His weight has stayed at a pretty consistent 16kgs for the last few months so we are seeing if we can maintain it through a fatty diet and lots of extra calories from things like up & go drinks.

    And seeing as Tobi is tube free, we are looking at doing Swim Therapy sessions for him to help with muscle strength.

      0 comments  |  Login to leave a comment

  • 3 months post

      26 May 2018
    Main image

    In the first 3 months after treatment Tobig has started to attend kindy again, even though he still has his NG tube in for overnight feeds as he still has no appetite or love of food.

    He celebrated his 4th birthday.

    He slowly grew out of being tired all the time and crawling around.

    He begun to regain his strength and balance with lots of physio.

    And He became a doting big brother.

    In March,as a family we remembered how lucky we were to have each other, the Ronald McDonald House Charity & a good public health system, as it had been 1year on March 10th since we found tobis brain tumor by MRI (the type of tumor was diagnosed 4days later during surgery.)

    We attended the CCF Christmas party, a truck show in Trentham this year & even Got to meet real soldiers.

    Tobi has had several hearing tests over the past year and he has now been fitted for a hearing aid as he has severe high frequency loss, a side effect of one of the chemo drugs.

    He will only have 1 hearing aid as they cost $1903.25c each.

    Upside though, his first post treatment MRI was clear.

      0 comments  |  Login to leave a comment

  • Pneumonia

      26 September 2017

    So Tobi is getting over pneumonia and it only took 2 days after coming off his GCSF injections (meaning his blood levels were back normal) before he got sick. We new things weren't quite right when he started sleeping all day again then he spiked a temp of 38.1 which didn't come down until he got iv antibiotics. Another 4 night stay in choc in isolation after an xray confirmed pnumonia spots on the back of the left lung. some iv antibiotics and monitoring from the lovely staff there and visits from his big brother he soon perked up & they decided to discharge him with a weeks worth of oral antibiotics & a check up appointment date.

    His end of treatment MRI is booked for the 5th October so it should be about a week after that we get to fly home to wellington.

      0 comments  |  Login to leave a comment

  • End of treatment bead

      13 September 2017
    Main image

    So today we caught up with our CCF bead lady Angie.

    Tobi received his end of treatment bead (a purple heart with Eeyore), a gift of a small box of the big lego and a few other beads from these last couple weeks..

    We will still collect more beads of courage everytime he goes to clinic for check ups, For tests, hair growth, birthdays and when they remove what access lines he has. This will be an ongoing thing until he's 25yrs old.

    Today Tobi is the proud owner of 655 beads of courage and every one of them is special in its own way. Tobi loves all of his beads but now he has so many, he finds wearing all 7 necklaces at once is too heavy unless sitting down (they are glass beads after all ) so he prefers to wear only the latest one that he's threaded...

    Super proud. Happy Little trooper.

    655 beads in 6months.

      0 comments  |  Login to leave a comment

  • End of chemo

      11 September 2017
    Main image

    Friday September 8th....

    Today we celebrate Tobi finishing his chemo treatment. 2 days off 6 months since diagnosis.

    This #littletrooper has made it!

    The choc nurses are awesome and sing a special song for the kids on their last day. (They're all outside his room in the pucture shown as tobi is in isolation)

    We still have about 6 weeks left in Christchurch as the effects of chemo are still working in the body for 2-3 weeks after you stop being treated and during this time is when his bone marrow is at its weakest.

    Tobi is currently nutropenic and we are still giving him daily injections aswell as regular med.

    Tobi is still only tube fed as he still has no interest in food.

    We are waiting on follow up tests and an MRI. We will also have a end of treatment chat to our lead oncologist Tristan & his team to figure out a plan for wellington as tobi will need regular check ups and MRI scans for the next 22 years of his life. (That makes him 25!)

    Tobi will get to ring the 'end of treatment bell' at choc before we get discharged from Christchurch hospital, which is one of the most exciting things for kids who go through the cancer wards.

      0 comments  |  Login to leave a comment

  • Almost 6 months to the day

      5 September 2017
    Main image

    Today is 5 days off the day that marks 6 months since Tobi got diagnosed with a cancerous ependymoma brain tumor.... and Today Tobi collected his 622 'nd bead of courage.

    Tomorrow he starts his 4th and final round of chemo too. & What a huge journey it's been so far.....

    So proud #littletrooper

      0 comments  |  Login to leave a comment

  • Our everyday

      4 September 2017
    Main image

    When tobi is nutropenic we are in charge of giving him daily injections of GCSF which helps his white blood cells to reproduce, you need these to help fight infections..

    We are also in charge of daily medications and tobi can have upto 7 different types, 3x a day at different times. We have to take his temperature 3x a day because if he spikes it's straight into hospital to stay as it means an infection is starting somewhere.

    We are also in charge of his feeds & making sure his NG tube is always clean & in the correct place. Setting up for this can take around 10 minutes. We also change the dressing on his face regularly.

    Tobi carries a bug called ESBL and it basically means he goes into isolation every time he goes into CHOC either as an impatient or an outpatient. He will be a carrier for along time to come too unfortunately. It also means he's immune to almost every normal hospital grade antibiotics they prescribe. So it makes hime Harder to treat. He's also a C-diff carrier which is a bug we all have even if we're healthy, tobi is just effected by it as the Chemo killed all the natural good bacteria in his tummy and there's nothing to counteract it's effects at the moment.

    Tobi has also regressed a little in terms of speech and age, but this is only a short term effect of where the tumor was and the treatment he has been through so we see speech and language therapists on a regular basis and use a lot of sign with tobi now.

      0 comments  |  Login to leave a comment

  • Chemo treatment journey

      4 September 2017
    Main image

    Tobi has met so many amazing people during this journey.

    After dinner one night we had Darth Vader to visit. Suzie Cato came on another afternoon. It's been really cool to see him smiling.

    Tobi has been in and out of hospital several times over this whole chemo treatment. With Infections, high temperatures, platelet or blood transfusions, nurology checkups, physio, tube and dressing changes, and hearing tests are just to name a few... so please bear with us during this time as we are still trying to function as a family and spend time together when we can too..

    Tobi has adjusted well to the hospital life and enjoys playing doctors with his toys and the CHOC crew of doctors and nurses.

    He is one of the better patients they have had and he rarely complains. He always thanks them even if he's just had a needle. He's an amazing weekend trooper & is loved by all the CHOC staff

      0 comments  |  Login to leave a comment

  • Treatment so far...

      4 September 2017
    Main image

    So chemo has been the hardest treatment. And not only on Tobi, but hard on the whole family too.

    It's a very tiring process and there has been a lot to learn along the way.

    Tobi is only allowed certain places when he's nutropenic and he is now fully tube fed as he doesn't like to eat food.

    His ability to chew has also declined and his balance and walking is still being watched closey by the physio.

    All in all he is still a happy soul

      0 comments  |  Login to leave a comment

  • Big changes

      20 July 2017
    Main image

    Today this family bounded together in support of Tobi and have all had the chop and have all gone short!

    Here's the families transformations

    #bravedtheshave #familysupport #neveralone #freshstart #littletrooper

      0 comments  |  Login to leave a comment

  • Fluff

      19 July 2017
    Main image

    Tobi had an amazing day full of giggles & tickles.. books & Lego & bubbles.

    He's eaten a small amount for both lunch & dinner.

    He walked a few steps with some help- even though it's very hard for him at the moment with having little strength in his legs.

    & He enjoyed a bubble bath inside a blow up pool.

    Aldo we finally chopped off his hair!

    Tobi wasn't very happy about loosing his pride & joy but now agrees it feels a lot better & it's no longer going in his mouth as it falls out.

    He doesn't like the way it looks or that his head gets cold, but he's slowly starting to accept it & that it will grow back again in time.

    Tobi still has a small thin coating of babyfluff on his head.

    #littletrooper #bravedtheshave

    Tomorrow tobi's mum, stepdad, big brother, 2x auntys, his nan-nan & a few family friends are all coming together to shave/cut theirs really short in support of Tobi 💜

    Goodluck guys

      0 comments  |  Login to leave a comment

  • Tobis hairloss

      18 July 2017
    Main image

    As you may have seen over this past weeks lot of photos & updates, Tobi has started to loose his hair & very rapidly!

    For those of you who know Tobi, you would know his hair is his pride & joy! Tobi is heartbroken it's falling out so much now.

    As he has no choice in this loss due to the effects of treatment, the family has bonded together to shave theirs in support of this #littletrooper.

    Tobis mum, stepdad, big brother, nan-nan & an aunty are all loosing their hair despite it being winter!

    They also hope to donate any natural hair to the cancer foundation to make wigs for others.

    (There are pics to come!)

    #familysupport #strongertogether #bravery #strength #courage

      0 comments  |  Login to leave a comment

  • On the bright side

      18 July 2017
    Main image

    Tobi is giggling away & finally keeping things in his tummy.

    He was well enough to finish the last bit of round#1 of his chemo on monday and had another blood transfusion.

    He's no longer nutropenic-his nutrofills are at 4.5 whoohooo!

    He's sitting up in bed this arvo & just threaded more beads on his necklace. Upto #379 beads of courage now.

    All other lures have been removed & he's only got a picc line in.

    This little trooper now weighs 17.75kg - he was 15.35kgs 7 days ago.

    Tobi had the clown doctors into visit him on the ward.

    He's finally eaten a little bit of normal food & is asking for certain things again.

    All other levels look pretty stable & what's left of the electrolytes that need to come up will do it by themselves now he's tolerating 50ml per hr feeds.

    So They've stopped his fluids now & he gets a 4hr break a day where he's not attached to his feeding pole.

    Tobi is feeling a whole lot better in himself now & we are over the moon with his progress.

    #littletrooper 💜

      0 comments  |  Login to leave a comment

  • Busy end to the week

      18 July 2017
    Main image

    This little trooper has had another full on few days with another blood transfusion. His Hickman line taken out due to infection. A blood nose. A heart scan. An ultrasound. A CT & picc line insertion. Electrolyte infusions. And Many different medications pumped into him over the past few days, but he has had lots of sleep also.

    The ICU team has been involved in his care & we have also seen a wounds specialist.

    His hair has also started to fall out rapidly now.

    Tobi remains in a stable condition.

      0 comments  |  Login to leave a comment

  • Bugs & more isolation

      14 July 2017
    Main image

    Despite having an awesome start to the weekend, it didn't end that easy...

    On Sunday morning tobi spiked a fever of 40.2 with constant vomiting.

    So off we were to get admitted into C.H.O.C

    On Monday 10th they found tobi had 2 different bugs in his tummy (one being a serious gastrointestinal bug, the other is bacteria that we all have but his has overgrown because tobi doesn't have the immune system to get rid of it.)

    SO now in full cover isolation & lDespite having an awesome start to the weekend, it didn't end that easy...

    On Sunday morning tobi spiked a fever of 40.2 with constant vomiting.

    So off we were to get admitted into C.H.O.C

    On Monday 10th they found tobi had 2 different bugs in his tummy (one being a serious gastrointestinal bug, the other is bacteria that we all have but his has overgrown because tobi doesn't have the immune system to get rid of it.)

    SO lots of antibiotics later & the fevers are still up.

    They did more bloods & realized he had an infection in his Hickman line too. More antibiotics & a heart ECG. 2 Blood transfusions & a platelets transfusion & Still not better.

    So they decided to remove the Hickman line completely to eliminate 1 of the 3 infections.

    Lots of other meds to help keep electrolyte levels up & they have now started his milk feeds back up but as slow drips as his little tummy doesn't tolerate much.

    Very busy, very tiring week for this little guy.

      0 comments  |  Login to leave a comment

  • A good week

      14 July 2017
    Main image

    Tobias started to show am interest in food again but started with plain small things.-but he's still picky! 😄

    Tobi has become confident in feeding himself his milkshakes through the NG tube. - this is called 'bolus feeding' & it works with gravity.

    We have seen some awesome moments of his cheek & SAS & personality.

    He has also been a lot more tired this week & his blood levels show a non-existing immune system, so we have to be extremely careful with him now.

      0 comments  |  Login to leave a comment

  • Beads..

      8 July 2017
    Main image

    Before we could leave on Monday, we had to catch up with our bead lady Angie from CCF and collect the beads tobi was owed for the last couple weeks....

    As you can see, too loves his beads! He's so proud of them & he has threaded every single bead on himself.. he now has 327 beads, which makes up almost 4 necklaces and he is still collecting at least one a day throughout treatment..

    #ourweetrooper

      0 comments  |  Login to leave a comment

  • Start of chemo

      5 July 2017
    Main image

    On Thursday 29th of June Tobi got admitted into choc for the weekend.

    He had IV fluids run overnight for 12hrs and then his first round of chemo started on Friday. Another on Saturday & again on Sunday.

    He received 5 different drugs through his Hickman line, and they all run for a certain time (one is 4hrs, another is 2hrs, some are 15mins) & most get put in with IV fluids as well.

    During this time & 72hours after, Tobis body fluids are considered 'toxic' so we have to take some extra precautions so we don't get sick ourselves.

    He was in good spirits & was still getting cheeky to the nurses despite feeling nauseas & not being able to keep anything down..

    He enjoyed daily visits from his brother & stepdad and Tobi even had a visit from some Storm Troopers who came bearing a small gift bag full of goodies & a colouring in book to help pass the hours in hospital.

    So proud of this little dude

    #ourweetrooper

      0 comments  |  Login to leave a comment

  • Prep before stage 2 of treatment

      2 July 2017
    Main image

    Clown doctors came to see tobi in choc to help put him at ease with some fun interactions before his big op.

    Tobi has had more anesthetic & got put under for about 4 hours but didn't fully come out of it until 3hrs after he first opened his eyes in recovery.

    He had an MRI scan which all looked clear.

    Then he had his picc line removed from his arm and then a double Hickman central line inserted into his chest. Which both procedures also went smoothly without any issues.

    The day after, he had to get it re-dressed and had a hearing test with audiology which he completed like a champ - nothing has changed do far with his hearing over the course of radiation which is awesome!

    Chemo this weekend...

    Admitted from Thursday night onwards & depending on blood counts depend when we get released, hopefully monday (cross fingers)

      0 comments  |  Login to leave a comment

  • Out and about

      1 July 2017
    Main image

    Out and about again

    And off to wellington for 4 days...

    We had to stop at the juice bar at the airport so tobi could get a smoothie & the lovely lady there took him around to pick his own & make it himself. He didn't do too bad, adding in apple, watermelon, pineapple & mango sorbet before blending it together.

    Tobi loves flying & looking out the window. He always gets excited about the plane.

    We surprised his kindy with a visit at mat time & tobi got to play in his old stomping ground which he has missed so much - the sandpit! And he also made a painting for his friends there so they can hang it on the wall at kindy, which he was super proud of.

    We managed to catch up with a few members of the family & see a couple other friends while we were up too.

    Tobi also got to venture out with his cousins to Chipmunks for a full day of play which he couldn't get enough of...

    Now it's going to be a few more months before tobi can do this kind of thing again.

    Off back to Christchurch for preparation of the next step... chemo!

      0 comments  |  Login to leave a comment

  • Isolation

      1 July 2017
    Main image

    Second week without any treatment and tobi spikes a fever around 10pm.

    Off to the hospital to get checked out and end up getting admitted into isolation as his bloods showed he was fighting an infection of sorts. So he stayed in for 4 nights to get pumped full of IV antibiotics.

    Although there's all this going on he's still In good spirits considering.. radio lollipop came to see him & he even got a nurse blowing bubbles for him. And he's also found he can hide in the bottom cupboard in his room so the nurses have no choice but to seek him out...

    Tobi knows how to keep up the fun, games and smiles no matter the situation.

    Tobi has also had another nasal gastric tube put in as he is refusing to eat or show an interest in food since being taken off steroids. So we now have the job of tube feeding tobi special 200ml milkshakes 3-5x a day with all the necessary nutrition, fiber & calories he needs to retain a healthy weight.

      0 comments  |  Login to leave a comment

  • Enjoying the little things

      1 July 2017
    Main image

    Tobi has been enjoying the simple little things this week including a trip to McDonald's and he got to play on the giant playground.

    He's been gifted a giant tractor by RMH for being a brave boy throughout this journey so far.

    He's enjoyed going on car rides & sight seeing around Christchurch & has collected 244 beads of courage so far.

      0 comments  |  Login to leave a comment

  • Last day of radiation #33

      1 July 2017
    Main image

    Tobi has completed all 33 radiation treatments now like a trooper.

    He is bald under his 'top mop' to create what looks to be an under cut. He still loves what hair he has left & chooses to brush it before wearing a beanie or snap back.

    He enjoyed his last day with a visit from Frank the pug who he adored. And everyone joined in a party at the end. With balloons, presents and party food!

    We will miss everyone in radiation, they have come to be great friends over the last 7weeks.

    Tobi now has the next 3 weeks off to enjoy the things he won't be able to do soon as he will become nutropenic from the chemo. (no immune system to fight bugs)

    Tobi will also loose more of his hair during this chemo treatment & when it really thins the whole family is going to shave their heads in support of tobi so he's not alone!

    He will still have weekly dressing changes & clinic visits but he will be able to enjoy his days. We plan to visit home for a few days & take him around Christchurch on some adventures too. Here's hoping the weather will hold out for us

      0 comments  |  Login to leave a comment

  • Tobis last week of radiation

      2 June 2017
    Main image

    Over this last week tobi has found a liking to a Japanese dish called kaarage chicken on rice with dry coleslaw & Japanese mayo, which he enjoys trying out the chopsticks.

    He also has a new craving for copious amounts òf popcorn & lots of marmite sammies along with some strawberry milk to wash it all down with.

    Over the course of his radiation, tobi has learnt to use the rotation buttons on the remote (with direction of the radiation therapy girls) to help set up the machine every morning before undergoing his daily treatments.

    Tobi also attaches the mask to the hose for the anesthetic gas, under the watchful eyes of the sleep team.

    As this is the last week of radiation, he now has entered phase 4. Which means a higher concentrated dose to the mostly affected area (where the tumour was attached to the brain stem at the top of his spine) so they have to image everyday to make it precise.

    The radio lollipop team have been visiting RMH over the past few weeks to spread some joy amongst the kids here in any way they can. Tobi enjoys their company & activities.

      1 comment  |  Login to leave a comment

    • 12/06/2017 by Justin Ashworth

      So proud of him such a strong lil troupper I'm still praying every day for him good bless you guys 😊

  • Feeling more comfy

      2 June 2017
    Main image

    Recently we had an amazing group of girls into RMH who prepared a Mexican night for us.... the Tactix netball team! ☺ Tobi absolutely fell in love with one of the team, Temalisi. (Since tobis journey first began he has withdrawn alot from his usual social self-until meeting Temalisi) he clung to her the whole night & she adored him.

    Tobi has found a new liking to music & now has 189 beads of courage

      0 comments  |  Login to leave a comment

  • Over halfway....

      2 June 2017
    Main image

    We have had lots of ups and downs. Late nights, early mornings, night terrors, medicine hurdles, hairloss, sickness, midnight cravings and pickiness with daily food..

    We have had a sprint car come and visit us which tobi was over the moon about & had plenty of fun exploring every inch of the car close up & had free reign of the drivers seat for over an hour.

    He now weighs in at 16.5kgs.

    His blood levels are down but still not low enough for a transfusion.

    We have become really close with the radiation & sleep teams over this course & tobis treatment has become more of a family thing with everybody getting in on the fun. ☺

    They have made this part of tobis journey alot easier. ❤

      0 comments  |  Login to leave a comment

  • Halfway

      13 May 2017
    Main image

    Days #15, #16, #17 & #18 of radiation.

    We are halfway through this course of treatment now.

    This week we have had our ups & downs, steroid rages, eating binges & sleepless nights.

    Tobi is becoming more tired & grumpy, more baby-like & clingy as things go on.

    He craves milk, cheese & fruitloops on the daily & other tastes can change within minutes or from week to week. He's unpredictable & it's crazy trying to feed him.

    He is on about 6 different medications now just to keep the headaches, vomiting, constipation & brain swelling at bay & try to increase his appetite.

    Tobi has gone from 15.6kgs down to 14.6kgs then back upto 15.2kgs, all in only a week so he is getting there slowly.

    We have had a few sleepless nights due to tobi being restless, beibg harder to get to sleep or having nightmares/terrors while sleeping that could be caused by a number of things.

    This little trooper is one brave boy! 💜

      0 comments  |  Login to leave a comment

  • A few better days

      8 May 2017
    Main image

    Day #13, the weekend & Day #14.

    Steroid food binges of noodles & bowls of fruit loops & large cups of milk. Alot more ups over the weekend.

    Got a dinosaur animal balloon & a t-rex facepainting done on his hand at the carnival, enjoyed playing on the bouncy castles, kettle corn, tried Candy floss but wasn't a fan & played lots of throwing games.

    Had enough balance & motivation to ride a bike... first time in about 6 months tobi has found interest in riding something un-aided other than a rocking horse.

    Tobi also received a parcel in the mail from his kindy back in the hutt valley. He was so happy to open it & inside find the photos & pictures drawn by all of his friends back home. He spent all afternoon going over his mail, re-reading things.

    Day #15-18 of radiation for the rest of the week & a few other morning

    Hospital appointments.

      0 comments  |  Login to leave a comment

  • Ups & downs

      8 May 2017
    Main image

    Days #10, #11 & #12

    We have had our ups & downs these last few days.

    Along side the tiredness, balance issues & loss of appetite, Tobi is feeling more sick & having more headaches, so that involves taking more meds & having more regular check ups & blood tests.

    He has gone a wee bit backwards in terms of maturity & his language but those are both short term effects that we can help him overcome after treatment has finished.

    But he is still being a real trooper!

    Nana came down from wellington to visit for the day so Went on the double decker bus around the city.

    Dressed up as buzz lightyear at the choc ward on dressing change day for his PICC line.

    & even Visited the canturbury museum, had a photo with the lion & got to sit on the virtual reality snow mobile which he loved.

    The radiation oncology team are amazing & always try to make it fun and as routine as possible for him.

    & the choc team are on top of any concerns we have with Tobi as soon as they arise.

      0 comments  |  Login to leave a comment

  • Sunday 30th

      30 April 2017
    Main image

    So we think the steroids are working now.

    Tobi was up early craving apple bars.

    Then he was a grumpy boy most of today.

    But managed a short bush walk & heard a few giggles when he saw his brother feeding the birds and climbing the trees.

    He opt'ed to eat eggs, spaghetti & chips for dinner over deviled sausages. 😧

    Its becoming harder to find things that Tobi is happy to eat now...

    He's one very tired, run down, weak and sick looking boy tonight before bed.

    Tomorrow morning is day 9 of radiation.

      0 comments  |  Login to leave a comment

  • Saturday 29th

      29 April 2017
    Main image

    Review at choc at 1030am because of tobis worsening nausea and vomiting.

    He's loving his milk again but has lost the taste for food so he has lost 1kg in about 2 weeks so is now only 14.6kgs. (That's 5kgs lighter than he was back in January & hes looking weak & almost frail now)

    So Tobi is now back on steroids.

    Although it doesn't phase him having to take them.

    Hopefully the steroids will help increase his appetite but decrease his vomiting & the headaches from cranial pressure.

    (Steroids help reduce the swelling therefore relieving the cranial pressure which is the cause of tobis vomiting & balance issues.)

    The swelling of the brain is due to the radiation.

    Review to see if steroids are helping for this on tuesday after radiation when he gets his PICC redressed at the CHOC ward.

      0 comments  |  Login to leave a comment

  • Friday

      28 April 2017
    Main image

    Day #8.

    Very chill day.

    Was happy this morning & was ready to go before any of the other radiation staff were...

    Normal routine for treatment.

    On wake up, he just wanted to cuddle buzz and continue sleeping.

    We eventually got him into the pram by choice when he came to properly, happy to leave buzz again for another day.

    A real sicky grumpy day. No appetite. No motivation. So just chilled with movies and quiet play for some rest.

    Only craving today was boiled eggs-which he only ate the white of, leaving the ball of yolk in his bowl.

    Was sick again at dinner time so have a hospital review tomorrow for that at choc ward.

    But we got to see a gorgeous sunset together as a family from our rooms balcony at RMH before bed tonight which was awesome ☺

      0 comments  |  Login to leave a comment

  • Equipment

      28 April 2017
    Main image

    This is the Radiation mask they use for tobi.

    And the radiation machine.

    Theres 2 marks on the mask. The lower one gets lined up with the Lazer.

    The mask is required to be bolted down so you don't move during the procedure.

    The machine can move around 180degrees in both directions to evenly spread the treatment.

    Tobis radiation is targeted at where the tumour was and a small amount around the outside of that mark to kill any spores left.

    Radiation is lots of small concentrated x-rays aimed in particular spots to kill spores and seeds and tumours so they can't regenerate themselves anymore.

      0 comments  |  Login to leave a comment

  • Thursday 27th April

      28 April 2017
    Main image

    This morning we had a happy playful morning before radiation running around doing circuits with his other buddy Sarah & toy Buzz.

    Happy to hold his mask again all by himself after collecting all his paw patrol characters the staff put around his treatment room for him...

    He was cruisey to wake up afterward & just wanted cuddles & to watch fireman sam.

    Radio oncologist review & they were happy with how he's doing & prescribed some new laxatives for tobi.

    Went and saw some pirates at the mall doing a school holiday special puppet show for the kids.

    Lots of nausea & vomiting today. Has a little cold at mo. Constipation. Wobbly while walking. Grumpy. Picky with eating- cravings can change daily or weekly.

    Had no appetite all day until dinner time where he chose noodles over his usual favorite of sausages and potatoes..

    Early night tonight for day #8 tomorrow

      0 comments  |  Login to leave a comment

  • Visit to CCF

      26 April 2017
    Main image

    Wednesday 26th

    This afternoon we went to the Child Cancer Foundation lounge where we met with our bead co-ordinator Angie.

    She talked to us about all the different procedures Tobi has had over the last 3 weeks until today and gave tobi some more beads in recognition of those courageous things.

    Today he got an extra 32 beads to add to his necklace.. which he took great pride in doing himself with some immense concentration.

    This task helps greatly with his cognitive skills which we need to keep.

    That now puts him at a grand total of 104 BEADS OF COURAGE!

    He will earn another few more beads over the next couple of treatment days left this week.

      0 comments  |  Login to leave a comment

  • 26th April

      26 April 2017
    Main image

    Day 6 of Radiation. (Becoming routine)

    Today Tobi woke up happy at 7am!

    Chose to wear his dinosaur tshirt and paw patrol hoody then jumped in the pram after gathering his day bag, ready to go.

    Off out the door at 730am to see our lovely radio oncology team at Christchurch hospital.

    Tobi was incredibly brave today, holding his own anesthetic mask. The mesh mask and breathing tube are applied for only about 10min while Tobi is under general anesthetic.

    (The mesh mask is to prevent the patient moving during the procedure, but it also has marks on it so they line up the lazer lights with it to get the radiation in a particular spot every time. They also do an image before they apply the radiation.)

    Treatment today went really well. Tobi even woke with a smile and was happy to give his buddy Tess a huge cuddle before going home.

      0 comments  |  Login to leave a comment

  • Anzac day

      25 April 2017
    Main image

    Day #5 of radiation.

    Today Ash and tobis big brother Odin got to join us and see how it all happens everyday.

    Today at radiation oncology they changed the path of paw prints leading the way to his machine.

    The boys had lots of fun following them & finding all their paw patrol pals along the way.

    Tobi placed his 5th sticker on his chart to count down the treatments.

    He then met Richard, one of our anesthests and they had a good chat about buzz.

    Tobi is very brave when going to sleep wit the mask. Then he has a special breathing tube put in to help hold his tongue forward. His mesh mask gets applied so they get everything in the right place then it's out to the desk to watch everything on the monitors.

    Its all a very quick procedure & the anesthetic is the longest part.

    Tobi doesnt have a big appetite and seems more tired today so it's a chill day.

    Bring on day 6 tomorrow

      0 comments  |  Login to leave a comment

  • April 24th

      25 April 2017
    Main image

    Day #4 of radiation today.

    Tobi took longer than normal to wake up from the anesthetic today and wanted to keep going back to sleep for about half an hour afterwards.

    But was happy to play paw patrol with Tess when he was awake properly.

    Tobi is a big grump until about midday everyday so he spends the morning chilling doing things he think hes capable of until then, weather it's dvd time or some gentle play.

    He had another 'sicky' day and not much of an appetite but that didn't stop the cheeky monkey from getting on the playground for a small playtime in the afternoon after a round of anti nausea drugs.

    Radiation day #5 tomorrow. We get to sleep in by half an hour as of the public holiday.

      0 comments  |  Login to leave a comment

  • Chill weekend

      23 April 2017
    Main image

    Saturday tobi slept in until 9am. Requested popcorn and a glass of milk for breakfast. Had a walk in the sunshine to the botanz to hunt some pet rocks out. Had a grizzly afternoon so had lots of rest due to a headache but managed to put away half a large pizza for dinner before having an early night.

    Sunday we saw a hospital helicopter fly into the park on our walk in the sunshine when we ventured out to go grocery shopping in the morning.

    Tobi was abit nauseas which made him very picky with his eating and with what he wanted to do all day. A very tired Boy who dozed on and off.

    Day 4 of radiation tomorrow.

    Taking it 1 step at a time.

    Day by day.

      0 comments  |  Login to leave a comment

  • Friday - day #3

      23 April 2017
    Main image

    Today is day #3 of 33 radiation treatments. tobi took longer than usual to wake up from his anesthetic. When he eventually did, his friend tess got him colouring in a special paw patrol colouring book..but again he didnt want to leave buzz at the radiation oncology dept. When it was time to go..

    He was still wobbly on his feet all day and kept bumping his head alot- could be a side effect of swelling from the radiation. He also had no appetite & had no interest in food.

      0 comments  |  Login to leave a comment

  • Radiation day #2

      20 April 2017
    Main image

    So far tobi has had 2 of his 33 sessions.

    Today he was wobbly on his feet & had a complete meltdown afterwards. But hes so brave & taking everyday like a trooper to the point now where he is happy to sit on the bed next to his friend Tessa & have someone hold his anesthetic mask to go to sleep.

    Think it helps there's paw prints leading him along the way from his recovery room along the hall to a paw patrol sticker chart outside his radiation room (charted for 33 sessions = 33 paw patrol stickers) & they have themed his treatment room as paw patrol pictures and even has the theme song to go to sleep to.

    He's a real superstar at radiation oncology chch!

    He had a really good afternoon but has been more tired today.

    Bring on day 3 tomorrow!

      0 comments  |  Login to leave a comment

  • Dinosaur

      19 April 2017
    Main image

    Tobi had a great afternoon hanging out with his brother.

    but unfortunately he was abit sick at dinner time and didn't have the biggest appetite.

    This is one of the many effects caused by radiotherapy.

    Not alot phases this brave little man though so when some ladies from radio lollipop showed up for a visit to RMH, tobi jumped at the chance to get something painted...

    He chose a dinosaur & loves it so much he wouldn't wash it off before bedtime 😄

    Bring on day #2 of radiation due tomorrow.

      0 comments  |  Login to leave a comment

  • Radiation day #1

      19 April 2017
    Main image

    Was an early start today, at the hospital at 7.45am.

    Tobi did exceptionally well. He did not grizzle & was happy to put his first of 33 stickers on his paw patrol chart.

    Sat up on the special bed & was very brave to hold his own anesthetic mask on to go to sleep. (He doesn't see the radiation mask.)

    The longest part is all the preparation - radiation itself is only applied for about 4-6 minutes, 5x a week.

    He was in good spirits afterwards, enjoyed a lemonade iceblock, some popcorn & watched fireman sam before getting his PICC dressing changed.

    He was a very brave boy today

      0 comments  |  Login to leave a comment

  • Tuesday 18th

      19 April 2017
    Main image

    Today was bloods to check his haemaglobin levels (red blood cells) and audiology appointment.

    Tobi did awesome! He even completed half the big kids test before he got too tired & his attention span decreased.

    After some much needed rest at Ronald McDonald house, we had a visit from the easter bunny.

    Tobi enjoyed playing around with his RMH friends & then being part of the egg scramble on the trampoline.

    So much chocolate! Very spoilt kids.

    It was a good day.

    Tobi will have his First dose of radiation tomorrow morning.

    He's Nil by mouth from dinner time through the night in preparation for the anesthetic needed for the procedure. This will be routine every night before a radiotherapy day.

    He will be allowed breakfast after he wakes from the anesthetic.

      0 comments  |  Login to leave a comment

  • Weekend away

      17 April 2017
    Main image

    Was an awesome weekend away back in Wellington.

    Saw lots of family and caught up with heaps of friends. (Sorry to those who we didn't get to see, it just was not a long enough time to come back but there will be a next time!)

    Tobi enjoyed both plane trips with his older brother Odin and exploring the awesome sculptures at wellington airport.

    They also got very spoilt with easter treats and easter hunts by all the family.. there's enough chocolate to last the year, but that's OK. Tobi needs all the extra calories he can get.

    Audiology appointment tomorrow and his first weigh in since Wednesday last week.. fingers crossed he's not gone below 15kgs or we might need another nasal gastric tube in..

    His PICC line is still not bothering him, he's still rough and tumble just more cautious of his arm now.

    Will be interesting when it comes to his first dressing change though.

      0 comments  |  Login to leave a comment

  • Wednesday 12th april

      14 April 2017
    Main image

    Tobis PICC line went in with 1 shot today! Yay! He did awesome & isn't really bothered by it. Just likes it covered up so he can't see it.

    (A PICC line is like an IV but its more permanent. No its not a needle, its a tube. It goes into a hole in his right upper arm into the vein up around the shoulder into the chest so you can take bloods aswell as give medications/anesthetics through the same tube without having to poke him with more needles....)

    And we got Good news....

    We got to come back to wellington for the weekend but have to be back in christchurch on Monday...

    Tuesday tobi's got audiology testing (this is protocol before he starts his treatment).

    And his radiation therapy has now been brought forward to Wednesday 19th of april, instead of the 24th. This is because treatments have to start 2 weeks from the last MRI scan.

      0 comments  |  Login to leave a comment

  • Our wee trooper

      11 April 2017
    Main image

    After exacly 1 month we found put Tobi had a brain tumour, Tobi has completed his first bead necklace with a whopping 76 beads of courage plus the CCF bead and his 4 name beads.....

    Its beautiful!

    He decides himself which bead goes in what order & we explain to him what every bead is for. (Every bead represents a different procedure or treatment or challenge he's overcome) He threads them on himself with a little help from mum.

    He loves his beads alot, is proud of them & enjoys wearing them around.

    Such a brave little boy. So strong. Such an inspiration.

      1 comment  |  Login to leave a comment

    • 12/04/2017 by Justin Ashworth

      Such a strong young boy can't wait to see all of his beads when he beats this 😁😁😁

  • 8th & 9th april

      10 April 2017
    Main image

    We had a great weekend. Got to go out and enjoy the sunshine together.

    Took a walk to the mall on Saturday then attended our friends birthday party here at Ronald McDonald house in the afternoon.

    Sunday we went & fed the ducks. Had lunch in the park. Played at the playground while mum (kage) cooked dinner for around 40 guests of the ronald Mcdonald house, single handed.

    On the menu was Roast Lamb leg. couscous. salad. colslaw. garlic potatoes & mac'n'cheese.

    Apple crumble/my egg, milk & butterfree choc cake with ice cream for dessert. Yummy!

    Was a great emotional out & stress relief being back in the kitchen again

      1 comment  |  Login to leave a comment

    • 11/04/2017 by Justin Ashworth

      So happy to hear you guys had a gud day

  • April 10th

      10 April 2017
    Main image

    So today's CHOC appointment went well.

    Tobi will have a PICC line inserted on Wednesday morning while under anesthetic.

    He has put on 200g over the weekend... putting him at 15.4kgs again.

    Doc & physio seem happy with his progress in his rehab.

    And he's got another 17 beads of courage to add to his necklace for the last 2 weeks of procedures/hospital visits he's had to have.

      0 comments  |  Login to leave a comment

  • Friday 7th

      8 April 2017
    Main image

    Today was oncology appointment again. We've found out tobi has lost more weight so is back down to 15.2kgs.

    Met with dietitian to discuss putting extra calories into his food again & how to handle his ever changing appetite & tastes.

    We got told Tobi will under go 33 treatments of radiation over 6.5wks starting on the 24th of april....

    He will be put under anesthetic to do radiotherapy everyday so he doesn't move or freak out over the mask or machine.

    Also some of Tobis tumour is being sent off to the states now for some research testing in hope it will benefit other kids like tobi in the future with ependamoma tumours.

      0 comments  |  Login to leave a comment

  • April 6th.

      8 April 2017
    Main image

    Tobis not allowed anything to eat or drink as he has a CT scan and radiation mask fitting booked for 130pm.

    He has to be Nil by mouth for the anesthetic. The hunger has played on his emotions alot today so he screamed the whole walk to the appointment and it seems there's only 2 things that calm him down... fireman sam played on my phone through YouTube and a buzz light year toy from his recovery room in radiation.

    The mask is so tobi doesnt move while he undergoes his radiation.

      1 comment  |  Login to leave a comment

    • 08/04/2017 by Justin Ashworth

      So proud of him 😁 thanks for update

  • April 5th

      8 April 2017
    Main image

    Today we were Up early for a 8am appointment at ECHO for a heart scan. This is to ensure its properly functioning before we begin treatment.

    11am we got to investigate the radiation machines and see the room where he will recover everyday.

    2pm was oncology appointment at CHOC and a blood test.

    His first & second ventricles have reduced in size but they're still enlarged. He is sick after being asleep so is on regular anti nausea meds. They are impressed with his strength and cognitive skills and that his co-ordination is slowly coming back. We have also noticed his depth perception is coming right again too.

    Very tiring day and very wet here in christchurch! We need to invest in gum boots I think!

      0 comments  |  Login to leave a comment

  • April 2nd

      2 April 2017
    Main image

    Had a really good happy day today.

    Had some playtime outside in the sun in the ride on remote control car at Ronald McDonald.

    Practicing more of his standing & walking & getting more confident as the days pass.

    We had lunch at the botanz together, fed the ducks & then enjoyed a restful movie afternoon.

    Clinic visit tomorrow

      0 comments  |  Login to leave a comment

  • 1st april

      2 April 2017
    Main image

    Off on an adventure today on the open deck double decker bus.

    Was lots of fun. We learnt heaps & got to see alot of the iconic & historic places of christchurch city together.

    Its definitely a must do if you visit this beautiful garden City

      0 comments  |  Login to leave a comment

  • 31st march

      2 April 2017
    Main image

    Tobi's Mri and Lumber Puncture All went well.

    It is part of the pre testing for his treatment plan.

    L.P is to Make sure there's no bad cells floating down the spine & MRi is to check there's no visible bits left.

    Hopefully we will find out on Monday if his ventricles have reduced in size some more since the last one...

    We got discharged that afternoon & gotta go back on Monday for a clinic visit.

    Hes Eating well. But still feels crappy in the mornings.

    As part of his rehabilitation we have to encourage him to move around like a normal kid-he definitely has not lost his love for cars

      0 comments  |  Login to leave a comment

  • 29th march

      29 March 2017
    Main image

    First oncology out patient visit today. All went well.

    Also attended the gym for some physio time this afternoon.

    Another MRI being booked in the next few days & seeing the radiotherapy oncologist next week to discuss how treatment will go, and to get a few of our questions answered.

    He also got given a giant smurf from a bikers toy run that came through with a firetruck.

      0 comments  |  Login to leave a comment

  • 28th march

      29 March 2017
    Main image

    We started his beads of courage today with a whopping 54, plus his name beads, 1 from CCF, 1 each from ash & myself called parent beads & 2 handmade animal ones-each from his CCF co-ordinators.

      0 comments  |  Login to leave a comment

  • Monday 27th

      29 March 2017
    Main image

    Day 17

    Today We got discharged from CHOC, but we have to stay at the Ronald McDonald house south island together.

    For now we're out patients with oncologist checkups every couple of days until treatment at christchurch hospital.

    He's alot more happy & active now back in the real world. Happy to move freely with ground play & tries to stand up himself but hes still a drunk.haha.

    He's also got a mini wheelchair that he's learning to use himself

      0 comments  |  Login to leave a comment

  • Sunday

      29 March 2017
    Main image

    Visited the museum with his big brother today. Had heaps if fun at the 75th anniversary of air new zealand expo there...

    But got tired really fast so back to CHOC for a decent nights sleep.

      0 comments  |  Login to leave a comment

  • Friday 24th march

      28 March 2017
    Main image

    Today is suture removal day for Tobi.

    Everything looks clean & he was incredibly brave during removal.

    Will be groggy for a few hours...

    But allowed out and about in the real world for the first time in afternoon but only for a few hours....

    fed the ducks at the Avon part way through the botanical gardens then off to the Mcdonald house for some time on the playground...

    Enjoyed a family meal & watched some paw patrol before heading back to the hospital for the night...

      0 comments  |  Login to leave a comment

  • Diagnosis Day...

      28 March 2017
    Main image

    Today our sweet little 3yo Tobi got diagnosed with a Posterior Fosser Cerebellar Type A. Ependymoma Brain Tumour.

    This is the 4th most common childhood cancer christchurch hospital sees every year, but they see less than 5 cases of ependymoma in a year...

    Tobi has Type A. Which only effects boys upto the age of about 10.

    Another type of Ependymoma effects adults.... and the last only effects teenage girls...

    Tobis brain tumour effects his eating. He vomits alot. Has lost about half his Speech. He has to learn to balance and walk again and learn co-ordination all over again. He doesn't have the same control he used to before he got sick....

    Tobi's ependymoma was caused by freak mutation of 1 single cell from the lining of the brain which mutates & grows incredibly fast.... which is why we saw him go down hill so fast over a few months. The blockage of the exit of spinal fluid from his head also didn't help with the loss of appetite & almost vertigo feelings he would've been experiencing.

      0 comments  |  Login to leave a comment

  • Tuesday

      28 March 2017
    Main image

    Nasal gastric and i.v lines came out today.

    Hes showing alot more of his Cheeky personality, a little attitude & has a good appetite now.

    He's put on 1kg since first being admitted to hospital.

    He's still very wobbly while sitting up but is making good progress.

      0 comments  |  Login to leave a comment

  • 20th march

      28 March 2017
    Main image

    Today is day 10 since we found out tobi had a brain tumour...

    Today is the day we get let out of HDU and transferred down to a special ward called CHOC (Childrens Haematology Oncology Center).

    Now for a couple days of rest before the big reveal on a diagnosis on Tobi....

      0 comments  |  Login to leave a comment

  • 18th March....

      28 March 2017
    Main image

    MRI was this morning.

    Just spoke to registra.

    Scan looks good. From what we can see the tumor is gone - but until we get biopsy results of what type the tumour is, we won't know about any treatment /microscopic bits that maybe left which may regrow, that we can't see on scan.

    His 1st and second ventricles are still larger than they're meant to be but they are smaller than before surgery. It does take a while for them to go back to a regular size... there are 2 small pockets of air in the 1st & 2nd ventricles from the drain (which is normal) but the body will rid that itself.

    He's grumpy from anesthetic & a wee bit sick but that's usual for him. He's awake & talking but hes tired. Asking for milk & wants to eat... Bit of a rough sleep for him last night because he had a headache..but managed a couple hours rest..

      0 comments  |  Login to leave a comment

  • 17th march

      28 March 2017
    Main image

    MRI now booked for tomorrow. Just needed oncology to be happy.....

    Potassium was at 5.9 yesterday

    But Should be sitting between-3.5-5.2

    Today it's 4.6.

    Been transferred from ICU to HDU.

    He stole 4 of my mint treat bites. Ate a bag of bacon chippies. Ate half his fish n chips for dinner tonight....& lots of full cream milk. Still on 30ml p/h of pedisure plus though nasal ga strict drip feed... hes finally put on 400g..happy were down to 4hrly obs. Nil By Mouth from 2am for an early MRi.

      0 comments  |  Login to leave a comment

  • 16th March.

      19 March 2017
    Main image

    It's now been 6 days since we found out from an MRI taken at 930am at hutt hospital, that Tobi had a brain tumour in the lower part of the brain which mainly effects balance, co-ordination & speech..

    That explains why he had that "tummy bug with spuratic vomiting for 2 months, completely lost his appetite & went from being a super active little independent boy that ate everything, to just being quiet, withdrawn, lethargic & always wanting to lye down who wasn't even tempted with maccas or ice cream...

    In these last 6 days he's been diagnosed. Transferred to christchurch from wellington on his first plane trip. put under anesthetic 4x. Had a drain put in. Has undergone Major brain surgery. Had several stitches in many places. Has had 2 small patches of hair removed (2nd and third haircuts) And finally today on the 16th, got the EVD (drain) & catheda out!

    And yes, that's a patch of pink hair... 😉

      0 comments  |  Login to leave a comment

  • 13th march

      19 March 2017
    Main image

    13th March Tobi had his major surgery to remove the tumour in the cerebellar.

    It was 56mm x 36mm x 29mm in size.

    Surgery took just over 5 hours all up.

      0 comments  |  Login to leave a comment

  • 12th march.

      19 March 2017
    Main image

    1 Day after the drain got put in, Tobi already has more skin colour, is more alert and semi smiling...

    Oh & he's upgraded to what looked to be similar to a smurf hat which charmed the little guy.

      0 comments  |  Login to leave a comment

  • 11th march

      18 March 2017
    Main image

    On this day, The little brave man got a 10cm long drain put into his skull that drained out into an external bag to relieve the pressure from spinal fluid build up in his little head.

    The tumour had grown so big it stopped the natural drainage path.

    The EVD took out 1/3-1/2 of the fluid we make... thus leaving him with enough to function but also draining it off slowly over 3 days...

    His big brother brought him the buzz balloon for being so brave.

      0 comments  |  Login to leave a comment

  • Arrived

      18 March 2017
    Main image

    Landed safely in christchurch at 830pm that night and got transported by ambulance from the airport to christchurch hospital.

    The flight staff and ambulance crew were amazing! There wete some very cool & interesting gadgets used during our journey...

      0 comments  |  Login to leave a comment

  • Flying #2

      18 March 2017
    Main image

    Excited big bro geared up ready for take off. Sitting behind his little bro...

      0 comments  |  Login to leave a comment

  • Flying

      18 March 2017
    Main image

    Excited about his first plane trip... not worried anymore about being strapped to a bed or the boxing gloves to prevent him pulling out his nasal gastric

      0 comments  |  Login to leave a comment

  • First aeroplane ride

      18 March 2017
    Main image

    Being transferred on to the life flight aeroplane

      0 comments  |  Login to leave a comment

  • Leaving hutt hospital

      18 March 2017
    Main image

    Friday night. 10th of march. 730pm. Leaving hutt hospital with the life flight crew...

    It was only 6 hours before this we found out....

    He had an MRI that morning....

      0 comments  |  Login to leave a comment