Surgery #9

Hi Everyone,

It's been a crazy month! Last I updated we were scheduled for Neuro Onc clinic on Fri. May 5th to discuss the suspicious spot on Grace's brain. Neuro Onc referred us back to Neuro Surg because they felt it was essential for us to know exactly what this spot was in order to decide if her treatment was complete or needed to be continued. We were booked to see Neuro Surg on Tues. May16. During the week of Mon. May 8 to Friday May12 Grace did well, just lots of trips to CVH for blood work but no transfusions. Finally by the Friday it was decided that Grace was independent of blood products and her own bone marrow was functioning well (producing WBC, RBC and platelets on it's own). We then saw Grace's surgeon on Tues. May 16 and they told us that they would be able to do another surgery within the next month. Then things got crazy. On Thurs. May 18 Grace had a great morning and was looking forward to spending the afternoon with her Nana and Papa while I was going to do some stuff for the new house. I heard her coughing while napping and I went in to check on her when I discovered she was vomiting all over her bed and was full of diarrhea. Nana and Papa had just arrived and as we began to clean her up she became very lethargic and we had to call the ambulance. When the ambulance arrived she was unresponsive and they insisted on bringing her to the closest hospital (Oakville Trafalgar). This was a challenge only because they were unsure of how to work Grace's lines etc. They were very good and were on the phone constantly with Sick Kids until they got her stabilized enough to transport her to Sick Kids. We got to Sick Kids in 22min via ambulance in rush hour. After lots of blood work, CT Scans, MRI's, shunt taps etc... etc... we found out that Grace had come down with a gram negative infection that had gone septic and was very toxic to her body which resulted in the lethargy and unresponsiveness. The bug had been acquired at the hospital during one of her stays and they believed it had lived on her skin until it invaded her blood stream. After 48 hours of antibiotics Grace started doing well again and Neuro Surg decided after consulting with Infectious Disease that they were OK to go forward with surgery. Grace had surgery on Thurs. (May 25), This was her ninth since Oct.. It lasted just under 4 hours and they took 19 biopsies of all suspicious areas of her brain. HERE'S THE GOOD NEWS: all preliminary pathology reports suggest that all tissue taken for biopsy is benign (not cancer)!! We will have final word by Wed. or Thurs. of this week. Grace also had a lumbar puncture that was also clear of malignant cells. So what's next: a few more days in hospital for observations post brian surgery, finish up the antibiotics for the gram negative infection, stitches and staples to be removed from her head on June 8th, possible removal of her central venous line and finally MRI's every 12 weeks to make sure her cancer does not return. Recurrence rate of her cancer is quite high (around 50%) but we now believe Grace has been cancer free since after her second round of chemo so we are very hopeful that she has had a lot of chemo in excess of what was used to clear her cancer and hopefully this will be helpful in decreasing her chance of recurrence. As a result of Grace's latest surgery she has lost some gross motor skills in her right arm (not able to lift it over her head and having difficultly curling it at her elbow) but this seems to be recovering and we will work on it when we work on her right leg in physio (lost some right leg strength in her first surgery so no longer walks independently). Grace is scheduled for ENT clinic to determine if her hearing loss is enough to need hearing aids. Even with all this going on, Ian and I feel so blessed to still have our baby with us and we decided a long time ago that if we can beat the cancer we could handle the side effects of treatment. So here we are with a baby who is very possibly cancer free and just having to have physio, OT and speech therapy.... AMAZING. So many times during the last year we thought we may lose her and this is the first time I think we both feel there is a very good possibility we will have her for many years to come... WOW! Again, thanks to everyone for all your support... We just may be approaching the end of this nightmare. I'll update everyone on final pathology once we know.

Lots of love!
Les

We're HOME!!

Hi Everyone!

Grace was discharged on Monday. We enjoyed a glorious day at home yesterday and spent today at Sick Kids for BMT clinic. We are home tomorrow and then at Sick Kids on Friday for Neuro Onc clinic. All went well in the last couple of weeks. Grace is off GCSF (the drug that stimulates her bone marrow) & all antibiotics, antifungals and antivirals (well except penicillin and dapson but she'll be on these for 6 months). Her counts continue to recover slowly with her platelets still having to be transfused every 3-5 days. Her WBC are 1.6, polys .62 and RBC over 100 so still very neutrapenic (at risk for infection) but OK. She remains in strict isolation at home for 3 months post transplant (just parents and grandparents) and then it will open up to a few of her friends given they have either had the chickpox or been vacinated for it in the 3-6 month time frame. At six months she's free to see everyone!! So far we've been lucky with fever (which means she has not had one in a while). If she does get one we will readmit for IV antibiotics. Her MRI last week did show the suspicious spot on her brian but her spine looked good. All the Neuro minds at Sick Kids will discuss her Thurs. at the Neuro meeting and advise us at Friday's clinic whether we will be back in for another surgery. Grace is in great spirits... playing, laughing, singing and bossing me around every moment she's awake (which is all day since she's decided she no longer needs to nap). We are thrilled to be home enjoying the simple pleasures like eating off plates (instead of out of take-out containers) & all going to bed under the same roof. We thank you all for your support during this insane time. Although we know we still have a big battle ahead of us, we are enjoying every moment while we can.

Take good care. Thanks for your prayers!
Love,
Les