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Brayden Rae

  • Chemotherpy Finished

      20 December 2015
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    Over the weekend of 12th and 13th of December, Jase and I spoke to Brayden's oncologist Tristian, about what to do with the next 4 cycles.

    On Tuesday (15/12/2015), I had a meeting with Tristian and it was decided by the team of oncologist to finish chemotherapy, in the best interests to Brayden's health. But they can not give us any guarantees the cancer won't return.

    Brayden had a great response to chemo before his surgery, with total removal of the tumour and the tumour being dead under the microscope.

    100% Cancer Free.

    After the surgery Brayden was getting sicker and sicker in between treatments, spending more time in hospital than at home and his platelets were taking more time to rise.

    And now with the recent fungal in his lungs, it was time to call it quits.

    Tristian said if Brayden was to have another round of chemo or 2 and get the fungal back in his lungs, if might not be a good outcome.

    If there had been any signs of spreading, or part of the tumour left, or it being alive under microscope there would be no way they would stop chemo.

    So under the guidance and putting our faith and trust in Brayden's team of oncologist, we went home for good on the (18/12/2015).

    We will only return to Christchurch/Choc, for tests, scans, MRIs. And of course to visit our wonderful team of experts and caring nurses.

    What's in store for 2016: end of January we will be having a end of treatment meeting and it's very detailed. Brayden will have a ray of appointments that week, and will be seeing his surgeon Gordon Beadle.

    As a parent, with a child that has had cancer, there's stress and worry, especially fearing it will come back.

    As we've said to Brayden if it ever to return we will grab it by the balls, and do it again.

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  • Fungal Infection

      20 December 2015
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    Brayden became very sick beginning of December. Brayden had just been in Christchurch for chemo, kidney scan, blood and platelet transfusions. Came home on Monday (30/11/2015) with his dad and big sister.

    Tuesday (1/12/2015), Brayden woke up and was walking funny. He said it was from sitting in car funny yesterday. He become sore so dad took to Timaru hospital to be checked over, came back and went to sleep. When he woke he was sore and pain relief was given, went back to sleep for an hour, when woke up next he had a temperature of 38.3. Back to hospital again, he was admitted in pain, high temperature and sore in bottom and left side of chest. He was put on 2 I.V antibiotics via Choc's protocols. His blood pressure was low too. During the night he had a blood transfusion. He was on regular pain relief of Panadol, tramadol and 2mls of morphine via I.V to keep him comfortable.

    Wednesday (2/12/2015), Brayden's temperatures remind high, and was given 2 blood transfusions and a platelet transfusion.

    Thursday (3/12/2015), 9.30am he went for a chest x-ray. Timaru doctors stay in contact with Choc throughout the 2 days in Timaru hospital. Choc wanted Brayden up in Christchurch asap to keep an closer eye on him. By 11.30am Brayden and I were on our way via an ambulance, he was also started on a third antibiotic on route to Christchurch. At 2pm we arrived in Choc, by then his breathing became harder and they put him on oxygen. At 7pm he went for a CT scan.

    Friday (4/12/2015), the pain team came and visited Brayden and suggested he starts a PCA pump, so he can be more control of his pain relief, it's a machine where he can push a button every 5 minutes. Still on 3 antibiotics, had 2 platelets transfusions and the dietician started him on TPN for 20 hours a day, this gives him nutrients via his hickmen line, that goes straight to the blood stream, as he was not eating.

    Saturday (5/12/2015), Brayden's 12th birthday.

    Things remind the same.

    Sunday (6/12/2015), was not a good morning, I really thought Brayden was off to HDU or ICU as he was struggling to breathe, lucky they turned the oxygen up and he settled down. He had another chest x-ray.

    Doc came into see Brayden and check him over, he said to us he wants Brayden to have a BALL procedure asap. This procedure consists of flushing his lungs and taking samples.

    Monday (7/12/2015), 9am Brayden went upstairs to have the BALL procedure and everything remind the same and his temperatures were more down than up.

    Tuesday (8/12/2015), a major turn around, Brayden's temperatures were breaking, and the PCA pump finished, his pain level had dropped too.

    But he was still sore left side of chest.

    Thursday (10/12/2015), a new anti-fungal medicine started via I.V.

    Friday (11/12/2015), beads of courage catch up, to date he has 1049. Had another chest x-ray.

    Over the weekend he had improved lots he was allowed out during the day, Sunday (13/12/2015) was his last night in hospital.

    Monday (14/12/2015), Released from hospital to stay at RMH at night and gone from I.V anti-fungal to oral tablets.

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  • Cancers impact

      2 November 2015
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    This year has been a hell of a year. Our family has endured so much since February. Brayden found a lump on his right arm on the 31st January 2015, the day before school was due to go back. To be told my son had cancer was so devastating, the first thing you ask, is my son going to die.

    After the biopsy, we waited 2 agonizing weeks for a diagnosis, to be told Brayden had Ewing Sacroma - bone cancer.

    That's where our roller coaster year started.

    Jase and I had to leave our jobs to care for our 4 children. We had to go onto a benefit, and winz didn't make that very straight forward and made us feel very uncomfortable for applying.

    Then to get told we couldn't relocate to Christchurch as Brayden's regimen was suppose to be week on and week off (which it never has been) and we lived 2 hours away, so we became a split family.

    I have done majority of the hospital stays with Brayden, while Jase stays in Timaru to look after the other 3 kids. It hasn't been easy on Jase, he's gone from being a truck driver to be thrown into the mother role, all the sudden he had to get kids up to go to school, take them to school, pick them up, learn how to use a washing machine, do the shopping and keep up with the housework.

    But then it hasn't been easy on our 3 other children, my 13 year son decided go live with his father in Ashburton, as it was to much for him having a sick brother (the boys are very close) and mum not around as much. My 6 year son calls me dad and my 10 year daughter was bullied.

    In term 3 we moved the 2 kids to another school where they had after school and school holiday programmes, by doing this Jase could start going back to work so we could slowly stop relying on winz.

    There has been times where we would just get home from Christchurch only to go into Timaru hospital, at least we are in Timaru, but it doesn't make it any easier, our roles still stay the same.

    As a mum watching my son go through hell, the pain he's experienced and feeling sick all the time, it's just awful to watch, knowing there's really nothing I can do but support him the best I can. Being away from the rest of family is the hardest of all, missing them so much, missing out of their laughter, their fighting, and missing the cuddles and kisses. Jase and I have experienced communication break down and our relationship has been on the rocks, and is suffering from all this.

    Then there's the stresses that normal life produces, as we were both working, we could afford our comforts in life, but all the sudden we were on a benefit, struggling to keep afloat. It's been really hard to ask for help in any shape or form, as Jase and I have always done it on our own.

    When Brayden was diagnosed, we were told he would finish his chemo cycles by Christmas 2015, but unfortately that is not going to happen, we don't have a finishing date but we know we going into late January or early February 2016, this is due to Brayden's platelets are taking longer and longer to recover now and Brayden's bone marrow is very tired due to the intense chemo given.

    There is so much people don't realise, the stresses, the pressure, financial strain, endless time crying, worrying if the cancer will return, and worrying about the next temperature and what it leads too.

    The only ones who do and know what it is like, are the families going through the same thing as my family.

    I wonder if life will ever be the same again.

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  • Brayden totals.

      2 November 2015
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    To date Brayden has stayed in Choc in Christchurch Hospital 100 nights and 9 nights in Timaru Hospital.

    So far there's been 80 car trips back and forth between Timaru and Christchurch.

    1 Flying Doctors flight and ambulance ride from Timaru Hospital to Timaru airport and from Christchurch airport to Christchurch Hospital.

    To date Brayden has had to have 30 blood transfusions and 8 platelet transfusions.

    He has 6 chemotherapy medications (usually 2 or 3 at a cycle) Vincristine, Topotecan, Cyclophosphamide (250mg or at 1200mg), Doxorubicin, Ifosfamide, Etoposide. Most of this chemo has 24 hour hydration, which is when he stays in hospital for 5 nights, apart from when he's on the cycle of Vincristine, Doxorubicin and Cyclophosphamide 1200mg, that's a 24 hour stay in hospital and we come back up for day 8 Vincristine and an i.v antibiotic . When he's on the cycle of Vincristine, Topotecan and Cyclophosphamide 250mg is when the hydration runs over 7 hours and we get to stay and Ronald Mcdonald House for 5 nights, followed by a trip up for day 8 Vincristine and i.v. antibiotic.

    Brayden has collected 913 Beads of Courage so far through is journey.

    Please check out Brayden's gallery of photos, there's a range of photos through out this year.

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  • Journey since surgery

      29 October 2015
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    After surgery Brayden still had 11 cycles of chemo to endure, as of today (29/10/2015), he's got 6 cycles to go with finishing mid January. At the beginning of his journey we were told end of treatment should be by Christmas but since Brayden's surgery, he's had his fair share of set backs.

    First one was two weeks after surgery, where he hurt his arm and was in extreme pain, so that took another week to get pain controlled.

    On July 19th we were in Christchurch for rountine bloods before chemo the next day, we noticed his right leg was red and hot, he had an infection. That delay was 2 weeks on i.v. anti-biotics before chemo could even start. While in hospital at that stage, Brayden was complaining of headaches and sore eyes, so an eye test was done by one of the choc doctors. She recommended go see an optometrist. Since Brayden already had glasses for reading, I rang spec savers in Timaru for an appointment. The outcome was he needs to wear glasses all the time, chemo related.

    Another dramatic setback was on 8th/9th August, Brayden was in extreme pain, we took him to Timaru hospital, after a very painful day and a CT scan we found out he had kidney stones, again chemo related. Doctor Rob from choc wanted him in Christchurch straight away. There wasn't a ambulance available, so Brayden and dad were going by helicopter but unfortately Christchurch's weather packed in, so the Flying Doctors plane came to the recuse. Brayden's first ever plane ride. Kidney stones were removed on the 17/08/2015, and a double-J stent was inserted for 6 weeks to help the kidney, the stones were very spikey devils. The surgeon said he made very unique stones.

    Chemo resumed on the 1st of September.

    On the 2nd of September Brayden's arm cast finally came off, YIPPEE!! He had cast on his arm since the 3rd of February 2015.

    Another delay which has been happening on a regular basis, is his blood count taking it's time to recover. In September they changed his weekend antibiotics to a i.v. antibiotic last day of chemo, as he was on regular co-trimoxozole from the kidney stones, they thought that was contributing to the delay in the blood count recovering.

    In the September school holidays we were called up to Christchurch early to have the double stent removed.

    On the 3rd of October we took Brayden to Timaru hospital with a high temperature, and he was complaining of sore bottom. Doctor found a small tear and gave us a script for lignocaine gel to numb that area, especially after doing number 2's.

    Around 4pm that afternoon we took him back as his temperature sored, he had an infection. Stayed 4 nights in Timaru hospital. Chemo delayed once again and had to wait for platelets to rise. So finally on the 15th chemo started, lucky it was only a 24 hours stay.

    We had to go back to Christchurch for day 8 chemo-vincristine and have his antibiotics on the 22nd, after doctor Lisa checked Brayden over, as Brayden told her about his stay in Timaru hospital, she thought she should have a look make sure it was ok, she also swabbed his inner left cheek. I said to her we'll in Timaru hospital this weekend as it's a long weekend. Mother know best, as we were. Sunday the 25th dad took Brayden to Timaru hospital as he had high temperature and a very sore bottom again.

    This proves chemo make him constipated and vincristine is the worse one for it. Bloods were taken platelets were 28 and hemgoblins were 65, later that day he had 2 red blood cells transfusions and a platelet transfusion. After the Timaru doctors spoke to choc doctor he was put on antibiotics.

    On Tuesday (27/10/2015) morning his CPR (sign of infection in blood test) was still high, so we were off to Christchurch later that day. Since Tuesday he's been on 2 sorts of antibiotics and his CPR has dropped, his bottom is still sore but with regular panadol and tramadol the pain is much less, unless he goes to the toilet. This could be a regular thing while still on chemo, just doesn't get time to heal properly.

    Today is Thursday the 29th and he's had GFR for kidney function and chemo number 6 is starting tomorrow, a 5 day hospital stay. He's to have a CT scan and MRI before we head next week.

    platelets were28 and hemgoblins were 65

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  • Cancer Free

      29 October 2015
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    After a 12 hour surgery, I am pleased to say Brayden is 100% CANCER FREE.

    Pervious to surgery Brayden endured 6 cycles of chemo to shrink the tumour and the brilliant surgeon Gordon Beadle removed all the tumour. His surgery consisted of removal of the humerus bone in his right arm and replaced with the fibula bone, from the right leg and donor bone from the States was screwed onto the back of the fibula bone to just passed his elbow. The nerves, tendons and muscles were managed by the team of Jeremy Simcock.

    The outcome of this surgery is Brayden's right elbow is now permanently fused and is CANCER FREE!!!!

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  • Braydens Surgery

      24 June 2015
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    The day is here, Brayden is having his surgery today, a big day for everyone involved. Brayden was very bright and bubbly before he headed into surgery.

    A long day ahead the surgeons said it be a 8 to 10 hour operation, alot involved, they are removing the bone and tumor and replacing it with a bone from his leg and a donor bone from the states.

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