Grace’s MRI/MEG

Hi Everyone,

As you can imagine life is crazy and phone calls tend to lead to tears. Good news… we are home!! Not everyone is in the loop so let me back track. Grace’s MRI/MEG did not go as planed on Oct. 12. They discovered that they had misdiagnosed Grace and her tumor was not benign but malignant and had grown to 10x its size in 4 months. As a result she had an emergency resection within 36 hours and we have been at Sick Kids for the last 24 days. The first 2 weeks we where in Neurosurgery where after a successful resection (99.5% removed) we were faced with poor biopsy results and excessive fluid on the brain requiring a second surgery to insert a shunt. Grace’s high dose Chemo followed a 3rd surgery to insert a Central Line last week. We have now completed her first of 6 rounds of chemo. The first 2 days of Chemo were very hard since Grace did not respond to the standard anti-nausea meds used. However, things have improved and we will be at home for the next 5 days with a nurse visiting daily for Central Line care as well as injections. Sick Kids has arranged for Grace’s “every other day” blood work to be preformed at Credit Valley so it will save us a bit of a drive. On Friday we return to Sick Kids for an out-patient chemo and then back on Sunday/Monday (depending on blood counts) for the start of round 2 as an inpatient again. Each of her first 5 cycles will last aprox a month (depending on if she gets an infection, fever etc. which would push every thing off) and then for her 6th session we will be inpatients for several weeks since it is followed with a stem cell transplant. Grace is doing well right now. Very tired and irritable and on tons of meds (over $1000 worth a week… thank god for a good drug plan) but we are hoping she settles and benefits from being at home (no 4am blood work of vitals every two hours (even through the night) as per the hospital). Due to Grace’s high dose chemo she will be isolated to our home when not at the hospital and as much as we would like to see you all, we can not have her in contact with anyone during this critical time (to decrease the chance of infection). Thank you all VERY MUCH for your prayers, good wishes and Grace now owns more Dora stuff than Toys R Us. Every last toy has been put to good use… helping her get through many tests without sedation (which is usually standard for her age). The additional knit blankets where a god send while she was vomiting since the hospital did not have a washer and dryer for us to use and Grace would not settle with out a “blankee”. The meals that were sent really helped since we would often find ourselves far too busy to run down to the Cafeteria to grab something (and after a couple of days of Caf food… simply lacking the motivation to do so). I will try to call when I get free moments. Keep our little lady in your prayers.

Take good care,
Les