In August 2012, days after his 5th birthday, our son William was diagnosed with severe hydrocephalus and a brain tumour. At the time of his diagnosis, the fluid build-up in his brain was very severe and had likely been accumulating for a long time, possibly years. The normal pathway of fluid drainage was completely blocked by an inoperable brain tumour (due to its location). William had surgery to insert a shunt into his brain, which now drains into his abdomen. William is dependent on this shunt to live, and will be for the rest of his life, as the redevelopment of hydrocephalus is life-threatening. While the shunt itself is completely implanted and functions on its own, adapting our lives, and particularly William’s, to protect the shunt remains a challenge.
William has a tectal glioma. It is a fairly rare tumour; around 6-9 % of all pediatric brain tumours are these kinds. It is not malignant, but it would be misleading to say it is benign, as it is a lesion that is taking up space in his brain, inside a bony skull with limited space. Brain tumours in kids are different from brain tumours in adults, and the treatment reflects this. Our neuro-oncologist has taken a wait-and-see approach with William’s tumour; William is monitored with frequent MRIs to assess the tumour’s progression. While we appreciate being able to avoid medications and their side effects for William, it is excruciating learning to be patient and wait for MRI results to see if the tumour is stable. With this kind of tumour, stability is what we are hoping for. It is not realistic to expect the tumour to go away.
Although William was able to walk into the hospital that day in August 2012, once he had surgery and the intracranial pressure began to normalize, he was unable to even sit up on his own. While he was suffering from the hydrocephalus his body had managed to find a way to keep him upright and mobile. After surgery, he was no longer able to hold himself up- but he learned how to sit up, and he learned how to stand, and he learned how to walk again. To look at him today, you wouldn't notice that he was any different from any other 6 year old playing. He worked so hard to get to this point, and he did it with a smile on his face and in his heart. He is the hardest-working 6 year old we know! However, William is still recuperating. He has the support of a wonderful Speech Language Pathologist, Occupational Therapist, Physiotherapist, and Kindergarten teacher. We work on gross and fine motor skills at home, and his therapists have also visited his school to assist his teachers. William’s rehabilitation impacts every facet of his life. After delaying his entry into school by a year, William is now attending Kindergarten part-time.
William does look “normal” on the outside, but his recovery has been difficult. We have had unplanned ER visits, some vision issues, a constant battle with fatigue, tumour growth and surgery to correct a malfunctioning shunt in February 2014. It will take years for his brain to heal from the injury caused by the hydrocephalus- and brain injury in children is particularly damaging. Children’s bodies may be very resilient and quick to heal, but their brains are growing and developing- and any damage impacts how that brain can develop. This is one reason why the medical team is reluctant to jump to chemotherapy for this kind of tumour, and radiation therapy is especially damaging to a 5 year old’s brain- so we hope to avoid it. We are dealing with the issues that we see now as best we can, but no one knows for certain how William’s injuries will manifest in the future. The constant fatigue is very troubling and difficult to manage; we are trying to increase William’s stamina but a single full day of school is currently too much. There is a pattern of issues that often develops with children living with brain tumours as they grow up, and we are trying to prepare ourselves for those issues should they arise.
William’s diagnosis really has been a nightmare, but we are so encouraged by his positive nature, his diligence, and his enthusiasm. We have had such wonderful support from family, friends, his medical team, his therapists, and his school. William knows all about his supertube (his shunt) and he remembers feeling sick and having surgery, and he remembers his rehab at CHEO and being able to play again, and just feeling like playing again. He gives 100% and rarely complains, even when we tweak his games to incorporate just a little bit more of his therapy regime. As his parents, it breaks our hearts to not be able to make him better, or do the hard work for him. William really is an inspiration to us every day. His road is really just beginning, and as his parents we are doing whatever we can to ensure we are following the right path for him, for his brother Aidan, his sisters Gwendolyn and Kristin, and for us. We are hoping William has a long, happy, and prosperous life- but he will always be living with this tumour, and we must find a way to empower him and support his journey.
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