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Finn's Brain Tumour Journey

  • Playing the waiting game!!!

      5 May 2023
    Posted by: Stacey Ross
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    Finn has officially finished treatment! We are waiting on and MRI at the end of May that will hopefully confirm she will be able to start living her little life again free of brain cancer!

    If the results are positive and she is in the clear our next step is to start rehab/physio with her. We have the option for a space at an inpatient rehab facility in Auckland for a month. Unfortunately we won't be able to make it work right now in a way that doesn't change the rest of the families lives.

    Our Waikato rehab team can offer Finn a grand total of one hour a week which isnt really going to cut it. So we have started to look for a private rehab/physio who specializes in paediatric/neurology/oncology. One local to our area is meeting with us in the next few weeks to see if we can make a plan that would suit Finn and us.

    Last week I spoke to our Starship team about checking whether the brain injury Finn received during her surgery would fall within the scope of ACC cover. If it does, it would make the private costs of rehab and physio much more manageable. It currently doesn't look as though it will fit the criteria but we are still crossing our fingers.

    Which leads me to where any new donations will be spent. All donations so far have gone into an acc for Finn and been used for anything directly involved with Finn and costs incurred by her cancer. It's been used to buy a second car so Jono and I could both have a car while Finn and I were in Auckland for radiation and Jono was at home on the farm. It's been used for gym equipment for use at home. Gym mats to put around her while she is on the floor so she can't knock her head, a pikler triangle for her to stand with and soft play equipment. It funded her tablet and any fun things we use to get through hospital stays. It's used for petrol and parking costs for her stays in both Starship and Waikato. It has helped us pay for any alternative, non hospital funded options we have tried in conjunction with surgery, radiation and chemo.

    Any remaining funds and any new donations will be used to help pay for her private rehab and physio. Even if she does get accepted for ACC, there will still be costs involved that while we can and will manage, any help would still be appreciated. ❤️

    Thank you all from the absolute bottom of our hearts for all of the love, support, messages and help you have given our family.

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  • New Year New Update

      1 January 2023
    Posted by: Stacey Ross
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    New year next treatment.

    Since the last update a lot has happened!

    At the beginning of week 4 of radiation Finn had some trouble with the shunt wound on her head. She was being well looked after by her team but it resulted in a shunt revision surgery for her. Hospital life is weird. We went to radiation that morning. She had her GA, had her radiation dose, we had a Neuro appointment and an oncology appointment then as I was walking out with her to go to RMH I got stopped by her surgeon and he said they had decided to change the position of her shunt. 3 hours later I had held her again while she went under and she was in another surgery. While it wasn't as big of a life change as the diagnosis weekend was having your plans for an "easy" week changed to more brain surgery is hard to handle. We stayed on the ward for a few days after and then we spent a long weekend at home. This delay meant her radiation went a week longer at the end as they couldnt continue radiation that week due to the new wounds on her head.

    She powered through the last 3 weeks after that. While we were aware of the shunt wound we didnt realise how much it was affecting her. She was like a totally different kid once that was sorted. She was happy and smiling. She learned how to feed herself again. She started to talk again. And she started moving her body a lot more.

    Finn finished radiation at the beginning of December. For the last 5 weeks of her radiation treatment our family were living in three different places. Finn and I were in Auckland staying at RMH on weekdays and back home on the weekends. Jono was at home working in the Waikato and our other 4 kiddos were with family down in the Manawatu. They were absolutely the hardest 5 weeks for our family. Everyone seemed to manage as well as we could but seeing them all together again after so long was the best feeling ever.

    Over the last month we haven't done much but Finn has achieved a huge amount. She can commando crawl. She has started to sit up by herself. She can climb onto our couch. Her movements have become so steady. They were being described as intended but uncoordinated. Now she is so steady and can do so much more. She can sit in a trolley again. Her speech is getting clearer and she is talking much more. She plays with her siblings a lot and she gets pretty frustrated, understandably, when they go outside to play as she can't follow them easily.

    Finn has spent since the 2nd of December at home. She hasn't had to see any doctors or have any tests since then. Her team said to take the break and make the most of it as come the second week in January she starts chemo. Little Finny has to have 4x 28 day rounds of chemo. Which hopefully takes her through to the end of her treatment for Brain Cancer. Before she starts the rounds of chemo she has to have an MRI, a lumber puncture (to check if there are cancer cells in her CSF) and an audiology test as chemo can damage her hearing. Then she has surgery to have her port inserted. The port is used to administer her chemo drugs, take bloods etc. Then she starts the chemo rounds. She will have 3 different types of drugs given over three days with varying degrees of side effects from hair loss to different types of cancer. Then depending on how she is feeling she will be able to come home before she does a top up on day 8 in Waikato hospital. If she stays healthy enough she will be able to be at home until her next trip to Starship on day 28 to start all over again on day 1. The treatment plan she is on has been very successful in treating Medulloblastoma in children. Finns chances of it being completely sorted by this plan are slightly lower as her tumor had metastisized (spread elsewhere in her brain). We are staying so positive for her, as is her team in Auckland. I know everyone says this but we really do have the best up there. From the nurses to the doctors to the ward receptionists and everyone in between.

    We are going to start the new year planning an epic end of the year. An end of the year where Finn is cancer free. And she's able to do everything she could 6 months ago. Where she can play with Pixie. Where she can share a room with her sister again. Where she can swim in the ocean she so desperately wanted to swim in this summer.

    Xx

    Stacey

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  • 30/10/2022

      30 October 2022
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    Hey team, here comes another big update - and I'm writing this again because I just wrote it and something happened, and I lost it all 😅

    Since my last update so much and happened, not long after I posted something of miracle occurred, after some very emotional goodbyes at the hospital, Stacey learnt that the team had been talking, and since Finn was stable, as long as Stacey was confident enough to learn how to tube feed and do Finns other health checks, Finn could go home until her radiation was due to start, only having to head back for a quick trip in-between for a procedure. Whhhaaattt?? Stacey and Jono leapt at the chance, and it didn't take long for Stacey to learn Finns care procedures.

    So on the 5th of October miss Finn went home for the first time since diagnosis! while at home Finn was showered with love, her siblings each taking turns to play with her, and make sure she was comfortable.

    On the 13th of October Stacey and Finn had to head back to hospital briefly for a quick surgery, one that no parent ever wants to talk of but one that was necessary to ensure that, should she want to, Finn could still have babies in the future. Who wants to even think about that for their 4 year old? Cancer is so cruel.

    After a quick overnighter to make sure she was ok, Stacey and Finn headed back home until Radiation was due to start.

    While at home some incredible things started to happen, and since that particular week they've continued to happen. Strong, determined, brave little Winny can now - lift her legs, shrug her shoulders, say I love you - in sign language (and can also do yes and no); she even started to talk again, saying mum, dad, no, yeah, wake up; she can laugh more like her old laugh, she cries (which is great because now Stacey knows if she's sad or hurting), she even has temper tantrums - which Stacey said are pretty cute; she can turn book pages, and point stuff out, and her hand eye co-ordination is getting pretty good.

    Proud is an understatment.

    On the 17th of October Finn started the true fight to beat this beast and she had her first radiation treatment. She will have this treatment 5 times a week and each time Stacey has to hold her while they use her PICC line to give Finn the meds to make her go to sleep. Stacey then lays her on the MRI bed and she gets the radiation mask, because she's going under she has a type of tube to keep her breathing but it's not a full intubation. The whole thing is horrendous. So while we are going about our daily lives in the morning just think of Stacey wheeling her precious little girl in for this treatment each morning, and it truly puts our struggles into perspective.

    Last week was week two, and Finn had a harder week. While she can communicate lots more (started talking a little bit, can sign, can point to things) it hasn't necessarily made things easier because she can't always communicate what she needs or wants, and then gets pretty frustrated. She hasn't been happy going into radiation, when Stacey is holding her and taking her in she's fine, but she's been yelling no at Jess (the tech) when she comes to get them. Finns PICC line is in a really awkward place, and it sounds like it maybe might be looked at again to see if a better placement can be done. Also her shunt site was a bit red, and the scab had come off, turns out it's a pressure point, and now she can't lay on that side at all until it's better, which is hard because she needs to be in her wheelchair to eat and her pushchair to go places, but can't lean back.

    Just some extra sucky stuff to deal with in an even suckier situation.

    Tomorrow is week three, please keep them in your thoughts and prayers.

    Today the kids head to their aunty and uncles for the month, they're going to be missed to much, but they will have the best time.

    Stacey and Jono would like to take the time to say that the love they were showered with for her month at Starship blew both of them away. They have books and soft toys and crafts and cute clothes/pjs coming out of our ears, much to the joy of Finn. They have had people take days off work and travel hours to visit and/or watch the kids. They know the hardest part is yet to come, and it would be the most overwhelming, hard to handle, stressful time of their family's lives if it wasn't for the people who have surrounded us with love and care. Please take this as their personal thanks, as they could never make you understand how much it has all helped.

    It's not over yet though, it's still just the start, so please keep sharing. Every little bit means so much.

    Courtney x

    Ummm how cute is this picture?! she is the best. It's so good seeing those beautiful blue eyes again.

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  • 03/10/2022

      3 October 2022
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    Well where to start.. its been a busy couple of weeks! Stacey went home for a week to get things sorted out before she her long stay at Starship, it was bittersweet for Stacey going home to her four other kiddies, while feeling the weight of not having Finn with her, she even served Finns plate a couple of times accidentally 😢 Finn was in good hands though with her Daddy staying by her side and regularly video calling home.

    Stacey and Jono have managed to sort care for the kids for the next 6-8 weeks and they're eternally thankful for friends, family and all of the donations that have made this happen, it is a huge weight off their shoulders as they face the next stage.

    Last Wednesday Stacey met with the team at The Child Cancer Foundation who came to her home to start Finns Beads of Courage, and inform Stacey of their support services. With tears in my eyes it breaks me to say that Finn already has 200 beads, and when each bead is for a procedure, it really hits home how much her little body has already gone through, and it's just the beginning.

    The following day I had the pleasure of driving Stacey and the kids back to Auckland to see Finn and Jono, it was the first time the kids had seen their little sister since they said goodbye to her at the enterance to Waikato Hospital on the day Finn was diagnosed. Watching this family be reunited was such a privilege, the kids lit up when they saw their Winny! we were a bit unsure how they would react to seeing their sister in a wheelchair with limited movement (because of her CMS) but it didn't even bother them, and they went straight into showering her with love, and making her giggle.

    Stacey and Jono then took the kids out for the day so they could have one last day together before Finns treatment begins, while Finn and I hung out in her room. We had a great time and Finn got spoilt with a foot and hand massage (she didn't want me to stop - girl knows what she wants!), lots of 'round and round the garden' with tickles, and playing piggies with her toes. Stacey and Jono managed to bring the kids into her room, and they all got to hang out once more before some very emotional goodbyes.

    Stacey has stayed in Starship since Thursday and will remain there now until Finn finishes her Radiotherapy which starts in a couple of weeks. Finn has had a couple of procedures to ready her for this including getting her "mask" made (the mask she will wear during Radiotherapy to help keep her head and neck still during treatment) and a few "tattoos" to help line up the machine. She has woken from the GA much better than the previous couple of times, thankfully.

    Finn continues to work really hard to regain some movement, she can open and close her eyes, laugh, wave (with some assistance), is learning to hold her head strong, can squeeze your fingers in reply to yes or no questions, smile, wiggle her toes and yesterday Finn whispered "yeah" to Stacey (happy tears). It has been decided that Finn won't start intensive Physiotherapy until after her treatment because its tiring for the body, and she needs all of that energy to face the next stage.

    Thank you so much for your continued thoughts and prayers, please keep them coming xx

    It was SO hard to pick a photo for this update, but I love this one of Finn with her sisters, Kiki on the top left (10), Addison on the bottom left (almost 8), and Finns twin Pixie on the right (4) hiding from the photo was brother Bennet (6). I will post some more pictures in the photos section on the main page.

    Love you Winny x

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  • 22/09/22

      22 September 2022
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    Here is a wee update on Finns week so far. Little Finny Loo (Finns nickname) had to have more surgery yesterday. Her EVD had done the job it was intended to do at the time, but it was only a temporary measure to drain the fluid in her brain. The hope was that she would essentially wean off it, but during weaning her body wasn't absorbing the fluid like it normally would/should, so she had a surgery to put a shunt in. It went into the ventricle of her brain and it runs beside her skull, down her neck and into her stomach to drain the fluid away.

    Finn also had a lumber puncture to check whether there are cancer cells in the fluid that has been circulating in her spinal fluid, so that her treatment plan can be made accordingly.

    The surgery went really well, however there was some trouble in recovery and she took quite a long time to wake up, she also wasn't doing the things that the doctors had expected to see so there was a lot of concern about whether the drain had been placed right, or whether there was a bleed, thankfully the emergency CT was clear and later that day she showed more improvement. Still a very scary time for Stacey and Jono.

    Stacey and Jono also faced some really hard conversations and decisions about things that will affect Finns future, conversations parents should never have to have about their sweet little four year old child.

    There has been some good amongst the nightmare though - friends visiting, wash off nail polish (essential when regularly visiting theatre) Uber Eats vouchers from friends (which is a whole new world for those country folk), finding the good coffee in the hospital for Jono and Finny Loo finding her laugh again.

    Today Stacey headed home for the week and Jono has stayed with Finn, this is Staceys first time seeing her kids since Finns diagnosis, as a home schooling mother myself I can't tell you how hard it is to write that sentence without crying. When you're a homeschooling mum you spend every minute of every day with your kids, you live and breathe their presence all day long, we don't just do it because we didn't find the right school or weren't to keen on the conventional school system, we also did it because we just want to be with our kids, so to not be... well it's just is too hard to put into words. It sucks. Cancer just absolutely sucks. The reality and gravity of this situation is heartbreaking. After this visit Stacey likely won't see the kids again until the end of November.

    Thank you so much for your donations, every dollar helps bring a little less stress to what is a very stressful time.

    Here's a picture of Stacey and her beautiful babies xx

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  • 18/09/2022

      18 September 2022
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    Wow, Stacey and Jono just want to thank you all so very much for your generosity and support, it's unbelievable, and as Jono said yesterday "the appreciation is immeasurable".

    Miss Finn is still recovering from her brain surgery and is spending a lot of her days resting, little tasks that used to come easy can leave her very tired, so its important she rests, and doesn't get too overwhelmed. Stacey got a beautiful surpise this morning though, Finn opened her eyes for a photo, and it was the widest she's been able to open them since her surgery, of course Stacey was super proud and cried happy tears, not knowing how long it would be before she saw Finn's beautiful blue eyes has been a very emotional time.

    Finn is working so hard to fight this horrible CMS, and when she makes big progress like this it's a testimony to her fighting spirit.

    Photo of Finn with her eyes open today <3

    You got this Finn, keep up that brave fight beautiful girl x

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  • 16/09/2022

      16 September 2022
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    The Neuro results have come back. Finn has a grade 4 Medulloblastoma tumor, plus 2 extra "nodes" that they think have metastasized from the main tumor.

    Stacey and Jono met with oncology today to set a plan.

    35 days from the day of her operation (so around 14/10/22) Finn will start a 6 week course of radiation. Week days on. Weekends off.

    A month after radiation she will start cycles of chemo. Each cycle takes a month. First week is chemo days (3 or 4 ish) in Auckland and the rest of the month at home. For 4 months.

    7 months total of treatment.

    The EVD tube (a tube draining excess fluid in the brain) is responding well to the challenge (get weaned off). They have said they will try to clamp it on the weekend and if she doesn't have any symptoms like nausea/raised heart rate/headaches from the clamping then they will remove it early next week.

    A picture of Fionnlagh holding some new jammies a beautiful friend sent her. Isn't she just adorable.

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