Jimmys brain surgery and NF battle

Neurofibromatosis- it’s a hard word to say, but it’s even harder to live with!  Jimmy is our amazing, handsome, bright, funny and cheeky 7 year old son.  Jimmy started telling us of head aches and eye pain about 3 months ago. Many tests, specialist visits and an MRI have been done which have diagnosed a few things... Jimmy has a condition called Neurofibromotosis type 1 or NF 1. Hard to say, even harder to live with, so we are finding out! This genetic condition can cause tumours  to grow on nerves, spine and in the brain, along with learning and speech disorders.  Jimmy had day surgery 3 weeks ago to remove a lump on his right foot that was getting bigger, painful and itchy. The lump removed from his foot was a nuerofibroma. This, along with an appointment with genetics at Queensland Children's Hospital and many cafe aù lait ( coffee and milk coloured marks on the skin) birthmarks confirmed his diagnosis of Neurofibromotosis.  After a visit to the opthamology Jimmy was referred  for an MRI of his head, orbits and spine the week after surgery on his foot due to suspicions of an optic glioma. Results from the MRI shows he has brain tumour, and 2 more tumours on his spine. We met with Oncology and Neurology this week to discuss the brain tumour treatment and have been booked for surgery to remove the tumour on March 17th 2020. We won't know the exact type of tumour or follow up treatment required until lab tests/biopsies are done on the tumour.  At this stage we think it is  pilocytic astrocytoma. Jimmy is his usual cheeky, happy, smiley self and apart from headaches is ok symptom wise. We have explained to him in basic terms what is going on and that surgery will remove the tumour and head aches will stop soon.  This is a progressive disorder and unfortunately will only get worse as he gets older.  We have a very long road ahead for our family. This has all happened so quickly, from diagnosis of NF to being informed of the brain tumour, all within 5 weeks.  We are overwhelmed, worried and scared, upset, angry.... all of the emotions. It has turned out life upside down.  We are very thankful we have an excellent team of specialists at QCH giving Jimmy the absolute best care and treatment available. Before Jimmy comes home from his brain surgery we need to purchase a good quality booster seat, suitable for his size, with excellent head support and cushioning as his brain surgery will be performed on the back of his head. Keeping Jimmy comfortable, safe and supported for travel is very important, and he will be travelling a lot for scans and tests in his follow up recovery plan.  He will also require a lot of meds, including epilepsy meds after surgery and in the following months.  Chemo and radiation therapy is also something Jimmy may need too.  Fuel costs and hospital parking costs are our biggest expenses at the moment. We live approx 50 mins away from the Queensland Children's Hospital and have a team of specialists on Jimmys case who we see weekly at the moment, all on different days.  Jimmy will need a whole new wardrobe of button up shirts and PJs as pulling a t-shirt over his head won't be an option for a while.  Education and  OT supports for rehabilitation will also be needed in the months to come.  Jimmy already has a severe speech disorder, and this surgery may affect it more.  Apps for an IPad that help with speech therapy are something that will be needed too.  Jimmys older siblings Noah and Isabelle are worried for their little brother too.  We are trying our best to organise things to keep life as normal as we can for them with school and sports and music.  We absolutely appreciate any donations  you are able to give to help us support Jimmy and our family through this scary brain tumour surgery and the NF journey that follows. We never thought we would have to ask and sorry that we need too,  Thank you from the bottom of our hearts Amanda, Anthony, Noah, Isabelle and Jimmy xxxxx Please keep Jimmy in your thoughts and send as many positive vibes his way as possible please! Together, we start this scary journey through brain surgery and recovery. We will update you all any news and photos along the way.