On Friday October 29th Evelyn was taken to the Emergency Room at Sick Kids Hospital. She was displaying rotatory nystagmus - a slight twitching of her left eye. After hours in the ER, multiple blood tests and an MRI, we were told that Evie has a tumor growing on her brain (to be clear, this is not brain cancer, nor a brain tumor, but a growth on her brain). This tumor is classified as benign, however because of the unique placement, pressing on her optic nerve, alongside the hypothalamus, it was affecting other areas of the brain - hence the twitching. She has been admitted to Sick Kids and is currently a patient in the Haemotology / Oncology Unit.
Evie's tumor has affected several areas and as a result she is currently being seen by a large group of doctors including Neurology (as the tumor is on her brain), Opthamology (as the tumor is putting pressure on her optic nerve), Endocrinology (as it is close to the hypothalamus) and Oncology (as the best option of treatment is Chemotherapy).
To date we know that surgery and radiation therapy have been ruled as they are both considered to be too risky given a) the placement of the tumor, and b) Evie's age. After being checked out by the Opthamology dept. we know that despite the pressure on her optic nerve, and the twitch she is displaying, the nerves in her eyes have not yet been damaged. The endocrinology team are currently testing to see if there are any hormonal concerns, but have told us today that almost any issue can be treated with some form of medication.
Evie's treatment will be a low dose / high frequency chemotherapy. Though we are currently In Patients residing at Sick Kids, we are told that once her treatment begins we will likely become out patients and return to the hospital once a week for her chemotherapy. Over the next weeks, months and years (to be expected) we will have regular check ins with all four departments, including frequent MRI's to determine the status of her condition.
As for Isabelle - we want everyone to know that she is ok. She has been given very limited information on the situation, knowing at this point only that Evie is at the hospital to get her eye fixed. We will be telling her more as we go along, but are using discretion - please respect our wishes her if and when you are talking to her.
The past few days have been extremely difficult, however we are slowly learning how to deal with our situation. We want everyone to know that Evie is not actually in any pain and in fact her demeanor has not changed at all - she is a happy, smiling, laughing, sometimes fussy, often curious 6 1/2 month old. We are thankful that she is unaware and has cooperated with all the nurses and doctors checking in on her as we have been told we have a long road ahead of us. In a matter of days our lives have been changed forever, but we recognize that we are also lucky to have caught her symptom so quickly and that we are fortunate enough to have access to one of the best facilities - Evie really is in the best place she could be right now, she has the best people looking out for her and taking care of her. We are taking things day by day and would advise everyone else to do the same. We need to focus on the good things we hear, no matter how small they may be, and we need to worry only about the next step in the process - anything else is simply to hard.
One last note: As for communication, I am emailing on purpose. We have had so many meetings with doctors and so many phone calls relaying information that we are already exhausted trying to keep people up to date. We understand everyone is concerned and we are happy to email an update every week or so to anyone that wishes to be included on that list.
Please help us stay strong for our little girl, she needs all the support she can get - and so do we.
Paul and Kristine
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