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Hoping. Healing. Believing. Team Tiago

  • Angel wings.

      13 May 2015

    A message from Jo via Tiago's Journey FB page….

    Heaven has received another brave yet tired soul to care for. Jose Tiago Gordon Pinheiro gained his amazing, fast, shiny, superpower wings yesterday afternoon.

    We really believed until that moment that our darling cherished big boy could beat his nasties, but they took his smile, they took his mobility, they took the sparkle from his eyes and in the end his spirit left that shell of a body and rescued my baby.

    Our big boy, 4.9 years old. Living and laughing with nasties since he was 2.5 years old. He is loving, he is clever, he is adventurous, he is amazing.

    "You can shed tears that he is gone, or you can smile because he has lived.

    You can close your eyes and pray that he'll come back, or you can open your eyes and see all he's left.

    Your heart can be empty because you can't see him, or you can be full of the love you shared.

    You can turn your back on tomorrow and live yesterday, or you can be happy for tomorrow because of yesterday. You can remember him only that he is gone, or you can cherish his memory and let it live on.

    You can cry and close your mind, be empty and turn your back.

    Or you can do what he'd want: smile, open your eyes, love and go on."

    I have learnt much from my son. To never, ever, give up.

    There is no Cancer in heaven, he knew this and really liked the sound of it.

    Team Tiago is still open for donations… In turn the family will be making donations to 809 foundation and Dream Chaser Foundation.

    Thank you so very much for your support in the past few months - we have gained so much strength and positive energy from you all.

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  • These days...

      20 April 2015

    The new normal is slotting into place ...

    We continue to need blood transfusions every 4 odd days at the moment but I hope that is temporary.

    We have got Tiagos pain more under control by introducing Ozone to his regime. The ozone has reduced his pain from needing oxymoron (morphine equivalent ) to a couple of doses of pamol a day. Yay!!

    Ozone is not commonly used in NZ so if you have questions about this please ask us.

    Tiago has started weekly playdate with True Colours who are a play therapy specialist charity here in Hamilton. This is Tiagos high light of the week!

    The Vit C / glutathione infusions are going well and we are slowly digesting and implementing changes from the genostics report (the bloods we sent to Europe ) we are currently looking for all sorts of treatments that may help our boy!

    Physically Tiago is weak. He does not walk a lot at the moment...although it depends on his motivation .

    Thank you all so much for all the support ... It is the only way we are able to investigate treatment options for Tiago!

    HOPING..HEALING..BELIEVING .

    love Team Tiago

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  • Home but not so happy!

      12 March 2015

    We are home...but that doesn't mean it's easy. T is in constant pain and needs constant attending overnight. We need a new way of doing this.

    Feeling broken and tired.

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  • Back into hospital....

      12 March 2015

    Update time

    We are still in Waikato hospital, today is day 6. T was admitted with a lung 'thing' and low blood count again.

    So we have been treating with IV antibiotics and a blood transfusion last week.

    His bloods have dropped again and we have decided to transfusion earlier now so when his red blood cell count drops below 90 we will transfuse instead of waiting to below 80. The difference for T is huge.

    T gets a lot of joint pain when his count is below 90 and he stops walking. His lungs also play up when the count drops.

    Apart from that T has recovered well, when he has blood he is great. We have made another new friend who he played with yesterday, hi Patrick! ! Having friends visit makes the day go fast .

    I haven't had a chance to welcome and thank the many people who have donated to Tiagos give a little page since the news paper article. We have been soo amazed by the generosity of our community and country. Thank you too to the people who have contacted us with offers of help, organic fruit and vege, professional services and consultation.

    Tiago got a new cousin this week which is super exciting, we love you Ms Sage!!

    Hopefully we will be home today or tomorrow, I'm not rushing. (Update: home tomorrow)

    Thanks again for all your love and support. We will get there.

    Tiago told Patrick yesterday " the doctors don't think I will survive but I think they are stupid"

    Not a word I usually teach my kids...but he will be ok.

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  • SO GRATEFUL x

      7 February 2015

    Jo and Andre would like to send a MASSIVE thank you to all who have donated thus far… they are totally over whelmed by the generosity of their friends, family AND…complete strangers!

    This is the latest update from Taigo's fb page… Tiago's Journey.

    Hi everyone.

    We had a great long summer holiday at the beach creatign the best memories ever. We came back to our current reality in a big heap though when Tiagos MRI showed progressive disease last week. The cells have now taken over his entire right humerous and lymph nodes on right shoulder area.

    Just as well we were already on track to start Vit C treatment this week eh!

    So Tiago had his first treatment ( the january one was a practice run) on Tuesday and our routine will now be Tues and Thurs mornings every week he will do Vit C.

    I have gone back to the drawing board with the plan, and really I just have to get back to basics, juicing, detoxing, exercising, vitimins, and loads of positive energy for Tiago to feed off.

    He has sensed my anxiety this last week and it really affects him so I have to shake the scary thoughts out of my head and get positive again.

    We get knocked down...but we get up again!

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