Support for Kaihautu in his challenging start to life. Born with Aggressive Soft Tissue Cancer.

Kaihautu, a special wee soul and our little blessing was born November 2nd 2020. There were no indications throughout the entire pregnancy that anything was a miss. After he was born however, a lump protruding from his right flank was noticed. Gemma (mum) & Mia (dad) were assured it was nothing to worry about. The next day the family went to ultrasound and pediatrics and were again advised not to worry so they were discharged and went home to resume normal newborn family life.

The next hospital visit was December 3rd 2020 to meet with the pediatrician who again advised not to worry about the protrusion and got a secondary opinion from a doctor. This is when the term tumor was first mentioned, and an operation to remove it was discussed as the tumor was thought to be benign [non cancerous].

The operation was on December 14th 2020, with the preliminary biopsy result being a malignant tumor. Kaihautu was again discharged waiting on the pathology results.

On the eve of Christmas 2020 the pediatrician called the family who had remained positive, but advised that the results showed the tumor was a very agressive soft tissue cancer and at this stage medical staff were unsure what they were dealing with. Christmas day was a very emotional and stressful day.

On the 28th of December 2020 Gemma, Mia, Kaihautu, and their 2 year old (Mahaki) flew to Christchurch and met with surgeons and doctors at Children's Haematology Oncology Center to discuss a tentative future treatment plan. What couldn't be discussed was the type of cancer Kaihautu had, resulting in a long agonising wait. January 6th 2021 they were notified that Kaihautu had been diagnosed with a very rare Extrarenal Malignant Rhabdoid tumor. An aggressive pediatric soft tissue sarcoma that arises in the kidney, the liver, the peripheral nerves and all miscellaneous soft-parts throughout the body.

On the 15 Jan Kaihautu was taken into surgery enduring an agonising 5 hour operation, to remove the remainder of the tumour and hopefully gain clear 2cm margins for a successful excision of the tumor site.

9 rounds of chemotherapy started on 18 Jan and will be administered over the next 6 months resulting in Gemma remaining in Christchurch Hospital throughout the whole treatment while Mia and Mahaki fly into Christchurch from Masterton via Wellington to support and spend time together as family as much as possible.

The family do not know how Kaihautu will respond to treatment and chemotherapy but are keeping positive and hoping for the best possible outcome.