Kye's story Home Kye’s story As Kye plays with his toys, doctors and researchers are desperately trying to find a cure for the form of brain tumour this gorgeous boy was diagnosed with last year. Mum Cinnamon explained that Kye’s doctors informed them late last year that Kye had a diffuse intrinsic pontine glioma (DIPG) brain tumour. “This tumour is in the pons region of the brain stem, intertwined between nerves and arteries that control the body,” she explained. “DIPG is aggressive, inoperable and incurable. It takes away the ability to walk, talk, breathe, swallow and survive.” “Chemotherapy doesn’t work in DIPG patients and, sadly, it has a zero per cent survival rate.” It was a Friday night – 22 September 2017 – when Cinnamon and Scott, Kye’s dad, noticed something was wrong with their little boy. “On Monday we had a GP appointment and I discussed my concerns. The GP referred Kye to a specialist paediatric doctor, which would be three weeks later,” Cinnamon recalled. “When we got home from the GP appointment, I noticed Kye was very clumsy when walking, even falling over three times in one hour. I took him straight to the emergency department at our local hospital for more answers.” At the Rockhampton Base Hospital, an MRI scan was performed on Kye. “Shortly after we were told they had found a brain tumour in the pons area of the brain stem,” Cinnamon remembered. “Kye was placed on steroids to reduce the swelling on his brain from the tumour.” Kye and his mum were flown to Brisbane and arrived at Queensland Children’s Hospital at 1am on Wednesday 27 September 2017. We were admitted in emergency and then given a room on 11a. Kye would stay here for the next six weeks. “Our whole lives have been turned upside down from that day when he was diagnosed at Rockhampton Base Hospital, however, we did not realise at the time how bad things were. “ "We thought the surgeons may be able to operate or maybe chemotherapy might help him, but, sadly we were wrong.”Donate now The family relocated from Rockhampton to Brisbane to be together – more than 600km from their home. Cody, Kye’s older brother, attended the Queensland Children’s Hospital School and both parents used annual and sick leave from work to be together and with Kye. “Kye spent six weeks as an inpatient in 11a, then another four weeks in Brisbane close to the hospital. Ten weeks total away from home, away from our family and pets and Cody away from school.” During the long stay in hospital and in Brisbane, Kye enjoyed the distraction of some of the services offered by the Children’s Hospital Foundation. “While Kye was an inpatient, we loved the pet therapy, music therapy and the bedside play volunteers. It was a fantastic distraction for him from the usual doctors and nurses.” A few weeks after finishing radiation and after the family returned home, they received a call for Kye to be part of a DIPG trial. “Kye needed to have an MRI and his first infusion within one month of finishing radiation,” Cinnamon said. “We immediately went back to Brisbane to start the trial.” Because of the trial, Kye gets a Nivolumab infusion every two weeks at Queensland Children’s Hospital. “This trial has given us some hope, where at first, we had nothing. Kye has had 16 infusions so far and the oncology team are very happy with how Kye is going. The oncology research team are also watching Kye closely and how he is doing on the trial.” Kye started Prep this year and has been on a few holidays with his family. Cinnamon has worked at Woolworths for more than 20 years since finishing school. She said her store – at Northside Plaza, Rockhampton – had been extremely supportive since Kye’s diagnosis almost a year ago. “The staff have done an enormous amount of fundraising for our family and we are very grateful for the financial and emotional support,” she said. Kye is one of 19 ambassadors for the Woolworths Regional Wall Tokens campaign. By purchasing a $2 wall token from now until the end of September, you are helping fund equipment and programs in your local hospital, which help families like Kye’s through an emotional, stressful, and at times uncertain journey. Woolworths Regional Wall Tokens is an opportunity to highlight some of the brave kids throughout Queensland and northern New South Wales, who you can help by purchasing a wall token. Read more of our ambassador stories Your donation will help fund life-saving medical research and critical equipment, and provide the highest level of care for sick kids, just like Eli. Donate Once Donate Monthly Your donation will work wondersfor sick kids today.Would you like to donate monthly? Your donation of will work wonders for sick kids Your Details Have a PO Box or can't find your address? State*ACTNSWNTQLDSATASVICWA Country Afghanistan Åland Islands Albania Algeria American Samoa Andorra Angola Anguilla Antarctica Antigua and Barbuda Argentina Armenia Aruba Australia Austria Azerbaijan Bahamas Bahrain Bangladesh Barbados Belarus Belgium Belize Benin Bermuda Bhutan Bolivia, Plurinational State of Bonaire, Sint Eustatius and Saba Bosnia and Herzegovina Botswana Bouvet Island Brazil British Indian Ocean Territory Brunei Darussalam Bulgaria Burkina Faso Burundi Cambodia Cameroon Canada Cape Verde Cayman Islands Central African Republic Chad Chile China Christmas Island Cocos (Keeling) Islands Colombia Comoros Congo Congo, the Democratic Republic of the Cook Islands Costa Rica Côte d'Ivoire Croatia Cuba Curaçao Cyprus Czech Republic Denmark Djibouti Dominica Dominican Republic Ecuador Egypt El Salvador Equatorial Guinea Eritrea Estonia Ethiopia Falkland Islands (Malvinas) Faroe Islands Fiji Finland France French Guiana French Polynesia French Southern Territories Gabon Gambia Georgia Germany Ghana Gibraltar Greece Greenland Grenada Guadeloupe Guam Guatemala Guernsey Guinea Guinea-Bissau Guyana Haiti Heard Island and McDonald Islands Holy See (Vatican City State) Honduras Hong Kong Hungary Iceland India Indonesia Iran, Islamic Republic of Iraq Ireland Isle of Man Israel Italy Jamaica Japan Jersey Jordan Kazakhstan Kenya Kiribati Korea, Democratic People's Republic of Korea, Republic of Kuwait Kyrgyzstan Lao People's Democratic Republic Latvia Lebanon Lesotho Liberia Libya Liechtenstein Lithuania Luxembourg Macao Macedonia, the former Yugoslav Republic of Madagascar Malawi Malaysia Maldives Mali Malta Marshall Islands Martinique Mauritania Mauritius Mayotte Mexico Micronesia, Federated States of Moldova, Republic of Monaco Mongolia Montenegro Montserrat Morocco Mozambique Myanmar Namibia Nauru Nepal Netherlands New Caledonia New Zealand Nicaragua Niger Nigeria Niue Norfolk Island Northern Mariana Islands Norway Oman Pakistan Palau Palestinian Territory, Occupied Panama Papua New Guinea Paraguay Peru Philippines Pitcairn Poland Portugal Puerto Rico Qatar Réunion Romania Russian Federation Rwanda Saint Barthélemy Saint Helena, Ascension and Tristan da Cunha Saint Kitts and Nevis Saint Lucia Saint Martin (French part) Saint Pierre and Miquelon Saint Vincent and the Grenadines Samoa San Marino Sao Tome and Principe Saudi Arabia Senegal Serbia Seychelles Sierra Leone Singapore Sint Maarten (Dutch part) Slovakia Slovenia Solomon Islands Somalia South Africa South Georgia and the South Sandwich Islands South Sudan Spain Sri Lanka Sudan Suriname Svalbard and Jan Mayen Swaziland Sweden Switzerland Syrian Arab Republic Taiwan, Province of China Tajikistan Tanzania, United Republic of Thailand Timor-Leste Togo Tokelau Tonga Trinidad and Tobago Tunisia Turkey Turkmenistan Turks and Caicos Islands Tuvalu Uganda Ukraine United Arab Emirates United Kingdom United States United States Minor Outlying Islands Uruguay Uzbekistan Vanuatu Venezuela, Bolivarian Republic of Viet Nam Virgin Islands, British Virgin Islands, U.S. Wallis and Futuna Western Sahara Yemen Zambia Zimbabwe < Back Your donation of will work wonders for sick kids Your donation of will work wonders for sick kids Your donation of will be charged on the of next month and the following months thereafter Your donation of will be charged today and on the of the following months thereafter Payment Details Credit Card Direct Debit MastercardVisaAmex Month*010203040506070809101112 Year*20202021202220232024202520262027202820292030 15th of every month 28th of every month What is CVV? What is Date of Debit? 15th of every month 28th of every month 15th of every month 28th of every month For more information please check our Terms & Conditions Your request is being processed. < Back Other ways you can help Everything we do for sick and injured kids is made possible by the generosity and support of our donors, partners and the community.