May 12, 2017

Just a quick update on Gabby.  She has recovered amazingly from her surgeries and is back to doing all her regular activities.  We are learning what are normal effects of having craniopharingioma and what are possible symptoms of complications. 

She has been having headaches about once a week and we were worried that it may be a symptom of her tumour growing back but she had a CT scan done and everything looks the same as it did after the surgery so headaches may still be part of her "new normal" living with craniopharyngioma.  

Gabby has also been gaining a kg per week which is worrisome and a sign of hypothalmic obesity.  We have seen a dietician and have drastically changed our diet to exclude added sugars, processed foods and carbs.  This seems to have slowed down the weight gain and we are hopeful that we may be able to get her weight gain to level off.

Gabby has been doing a great job keeping track of her food intake and any pain or symptoms she experiences.  She has been amazing and is very responsible.  She is very much a by the rules kid and if one of her doctors asks her to do something she is very conscious about getting it done.

Gabby still gets tired easier than before her surgery and we still notice some short term memory loss.  Her left pupil is still dilated more than her right and she still has some vision loss in her left eye which thankfully can be corrected with glasses.  We will find out in the 19th how much this has improved since her surgery.

I am counting down the days to the 19th when we will go in for an MRI, opthamology appointment and lab work for endocrinology.  On June 1st we will have our first clinic when we meet with all of our team and find out what the plan is going forward.  This will be the day I am hoping many of our questions will be answered.  Until then we won't really have any updates unless something goes wrong. 

Tomorrow Gabby is leading the Teddy Bear walk in town to raise money for the Stollery and Children's Hospitals of Alberta!  Just a small way we can give back to the Stollery which has been amazing and will continue to be a huge part of Gabby's treatment and management of her tumour.