Long term maintenance:
Kalani still wont eat any food due to the intense chemotherapy. Kalani is feed only by Nasal Gastric Tube. Kalani requires intense speech pathology training and her up keep of medical formula and machine maintenance is very costly.
Kalani also requires intense Occupational Therapy and Physiotherapy to teach her to bare weight on her legs. Kalani still has tremours and is unstable even when sitting due to her surgery and the location where the Brain Tumour was located. Walking if and when she will walk requires medical equipment. Kalani also has to wear leg splints at night to stop her from constantly pointing her toes.
Other long term complications include Kalani requiring growth hormones when she is older. Kalani has also lost high pitch hearing and is deemed infertile. Kalani may also face further surgery on her eyes if her eyes dont stop turning in, also a result of her surgery and brain tumour. We have also been told to expect some learning difficulties as a result of Kalanis treatment.
Kalani is now 2 years old she remained NED (No evidence of disease) throughout most of her treatment. In May 2018 Kalani completed treatment. On the 18th October 2018 our dreams of Kalani being being cured shattered. Kalani's recent MRI has shown that she has relapsed both in her medulla (brain stem) and her spine. There is no cure left to treat her relapse. Kalani will have neurosurgery again next week to remove as much cancer as possible to try to prolong her life. Hope's of a full ressectiom are no longer available due to the relapse on her brain stem. Kalani will then start a targeted therapy trial to try to stabilize the cancer from progressing. The nature of ATRT is extremely aggressive and resilient and we know that we only have a matter of a few months left with her now.
Please help our family be able to support Kalani throughout her treatment so that we can try and stabilize her cancer with whatever alternative means and therapies we can access. We still pray for time so that perhaps by miracle a cure will become available to save our baby girl.
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