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
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
posted by Lesley at 6:34 p.m.
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