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Help for Maximus and Family

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      1 January 2017

    Written 30/12/16

    Flight NZ 429. We're on our way home! What a year it has been nevertheless it appears that 2016 has extended it's various hurdles, trials and challenges to most. May we all come out stronger for it.

    Thank you to every single one of you who have helped relieve the pressure of our journey. It has been said before but we are so grateful and humbled.

    Maximus is progressing well. We were told that he received "the mother load" of conditioning treatments however he got through the initial transplant better than most. "Above the curve" to quote his consultant again. Yes the days were extremely hard requiring morphine and the like however we soon found him rising from the depth of the bone marrow transplant and into the green zone sooner than expected.

    Maximus was improving daily but Graft versus host disease then presented itself which he is still receiving treatment for. A silver lining to this is the Graft versus leukaemia effect which also takes place meaning a less chance of relapse.

    Next week our Champion will have will have an operation to remove his Hickman line (a central venous catheter inserted in May) and this will be momentous as he'll be able to shower properly as the sight covering his chest must remain dry. He also plays so unreserved/ rough and I often find the boys wrestling so Mama's nerves of it being ripped out will thankfully be relieved too. It will be a day of freedom.

    So here we are staring 2017 in the eye and looking back at what was. As Maximus immunity won't be fully functional for 12 months we'll have to do 2017 a little differently yet we see this as an adventure. Uncharted territory yes but an adventure for our family.

    God bless and thank you all.

    ps When we arrived home Maximus hugged our house.

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  • BMT

      16 October 2016

    Here we are in Starship Hospital, room 16, a room with a view and the perk of having the rescue helipad below our window. It's day -02 in our calendar so to shed some light we thought a overview may be helpful.

    A bone marrow transplant (BMT) is a process in which damaged marrow is replaced with healthy marrow. Maximus is receiving an Allogeneic transplant meaning the stem cells are donated by another person who's tissue type is comparable with his.

    In Christchurch we were told a BMT was only an option if his one sibling Matthias was a match. This significantly reduces the risk of graft versus host disease (GVHD), an immune system reaction commonly seen after an Allogeneic transplant. In GVHD the donors immune system recognises the patients body as foreign & attacks it (protecting it's new home). So a match he was minimising such risks.

    We can break the transplant up into the following stages.

    Day -12 - -02 CONDITIONING

    Before receiving the transplant Maximus underwent 9 days of conditioning therapy. This is to make space in the bone marrow for the new cells. It is also used to suppress the immune system to reduce the risk of the donor stem cells being rejected.

    We are currently on day -2, our last day of this stage. Our champion just had 9 general anaesthetics over a course of 6 days down in radiotherapy and finished chemo this afternoon. It has been very hard but our trust has been and is in Jesus.

    Day 0 THE TRANSPLANT Tuesday 18/10/16

    Our delightful Matthias will go into theatre at 7.30am where stem cells will be extracted out of his bone marrow. He may require a blood transfusion and some initial pain is to be expected so we will very much so be caring for him. The precious bag containing these cells are then delivered to Maximus's room.

    Unlike Matthias's intrusive morning the transplant itself is somewhat straight forward. The stem cells are infused through a central line (to the heart) as were all his other blood transfusions and he could well be playing Lego at the time if able. These brilliant little cells then travel through the bloodstream until they find their way to their new home.

    DAY 0 - roughly DAY 28 PRE ENGRAFTMENT

    After the cells are infused there is a period of roughly 14-28 days where we are waiting for engraftment. This period can involve a lot of pain and severe sickness due to mucosisit. He will also have no immunity.

    DAY 14 - 28 ENGRAFTMENT

    The graft is starting show as indicated in the blood results. Mucosisit will begin to subside but other complications, infections, viruses and GVHD will now be closely looked out for as they only eventuate at this time.

    RECOVERY

    The immune system will take quite some time to recover so we'll have to take precautions to reduce the risk of infection.

    30 - 60 days later Maximus will be weaned off immunosuppressant drugs (used to suppress GVHD) and the risk of infection will decrease as a result. These drugs can also make patients feel lousy so it's a milestone in more ways than one.

    9 - 12 months. A fully reconstruct immune system.

    After all that information we really want highlight the endearing bond between Maximus and Matthias.

    They are always by each other's side. Maximus's is constantly getting smothered by Matthias's affection. It was Matthias who first made Maximus smile after he withdrew 2 1/2 years ago in Christchurch. As parents we have been known to extort this lovefest threatening Matthias with not being allowed to visit the hospital if he doesn't cooperate. This would be true deprivation therefore he always complies.

    Lastly the name Matthias was never on our horizon as we were fond of Zion throughout pregnancy but during those 'interesting' hours of labor the name Matthias was mentioned and surprisingly chosen. The meaning of his name is 'Gift of God' and we can testify what a gift this child is and now especially to his big brother.

    Zion is his middle name.

    Strange fact. Maximus will have Matthias DNA as shown in future blood tests.

    Love, thanks and gratefulness

    The Mathews

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  • Winter

      31 August 2016

    It's the last day of Winter and Spring is upon us. As we know Winter has it's blue skies but also storms to boot, such is the gondola of oncology life.

    Yesterday Maximus was back in theatre for a lumber puncture and to check his appendix wound as 2 weeks prior it became infected again so had to be opened and cleansed. The good news is it's healing nicely now and his treatment has been amended so this doesn't occur again. All I can say is Maximus has gone through some SAS training and my threshold for goriness is a lot higher.

    We've been here for 4 months this weeks and we have nothing but praise for the services of the Oncology Ward at Christchurch Hospital and Ronald McDonald House. Every day we're so grateful for what is freely given to us but we're on the move.

    As Maximus relapsed while on treatment it has been decided that it is in his best interest to have a Bone Marrow Transplant at Starship Hospital. Conditioning for this is booked for the 10th of October and we plan to be there for 3 months.

    So life in the south is coming to an end but one of the ways the children can see how much they have endured is through the Beads of Courage initiative- a different coloured bead to match the various procedures.

    Maximus has accumulated 558 beads in Christchurch alone. 104 overnights stays in hospital. 92 of those days confined to his room (to protect him). 33 blood transfusions. A dozen times in theatre to name a few. We couldn't be more proud of him and also his little brother who has daily been his sidekick.

    Thank you for your love. We'll update again closer to Auckland.

    The Mathews

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  • Thank You!

      4 July 2016
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    Amazing to see all the support from the Titahi Bay community. It's moving and humbling for us.

    We are immensely grateful for each and every contribution. From family and friends to the private, we thank you!

    Pictured here is the coin trail taken up by the Titahi Bay School.

    So Special!

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  • Post Surgery update

      27 June 2016
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    Update from Maximus' amazing parents: Maximus has made a great recovery after surgery and has improved vastly.

    His appendix had ruptured but amazingly the rupture was contained in an isolated spot and did not spread throughout his stomach.

    Since the surgery he has enjoyed one night out at the Ronald McDonald house, this being his first night out of hospital in 6 weeks! He has also started to eat small portions, play and managing to walk. These are great feats in our eyes.

    A few days ago we started another phase after a very beneficial week off treatment to recover post surgery. Thank you immensely for your love and generosity.

    Chris and Lisa

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    • 27/06/2016 by Penelope

      (From Ruben)

      Dear Maximus,

      Your behaviour is so good and we like that, we are so sorry that you are sick. We couldn't make it to the coin trail I had to stay home sick too. You can come and come for a play over at my place when you are back, you are welcome. And everyday if you want to come over, you can choose, it's ok if you don't want to, just let your mum know. Your pirate costume is so good, I really like that one and I want one too.

      From Ruben Kaiwai,

      Dear Lisa & Chris,

      I showed Ruben the photo of Maximus and he wanted to send a 'card' to him. I'm so humbled by his simple, loving and welcoming words that he has expressed towards Maximus. It is great to see that Maximus is showing some recovery following surgery, our thoughts and prayers are with your beautiful family.

      We hope that you are managing being so far from home.

      Nga mihi maioha, Pene

  • Surgery today

      14 June 2016
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    Hey there, due to infection & some other complications, Maximus will need to have his appendix out this afternoon. As most of you know, this legendary 5 year old is undergoing treatment for Leukemia in Christchurch currently. It's a big move to operate during this time & there are big risks - Your prayers would be deeply appreciated for this little champ!

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