Busy Two Week
Hi Everyone!
It's been a crazy couple of weeks. Where to begin??
Round 4 was uneventful (from what I can remember) until Sat. 21st. I was at home for a "night off" when I received a call from Ian asking me to return to the hospital because Grace had just had a seizure very similar to those she had prior to surgery. I raced back and we stayed up all night to monitor her condition. She had "shakes" all night that were very different from her other seizures but very concerning for Ian, myself and the doctors. First thing Sun. morning her Neuro Surg team ordered a CT Scan which showed us that Grace's tumour had not grown back and she still only had the one highlighted area that was evident on her last MRI. We were relieved! The Neuro Surg team referred us to Grace's Neurology team who immediately increased her meds and ordered an EEG for early in the week. Grace had her EEG Tues. morning which came back good and Grace has been stable (no "shakes" or seizures) since her meds were increased. We were released from Sick Kids Tues. at dinner time only to return to Credit Valley Hospital at 9pm that night because Grace's Inseflon (sp?) had come out. An Inseflon is a patch with a small tube that goes into Grace's muscle and that's where I inject her daily needle. A nurse at CVH reinserted her inseflon and took blood for a CBC because Grace had had a blood transfusion earlier that day at Sick Kids and we were not sure what her new counts were. On Wed. we received the news from CVH that Grace's counts were good and Sick Kids called us and asked us to come in for an earlier MRI apt on Thurs instead of the following Monday as originally scheduled. Thurs was uneventful at Sick Kids... Grace handled her MRI like a trooper and we did not see any doctors (always a good thing). Friday we were back into CVH for a CBC which showed Grace's counts low but OK and Grace had her first physio apt. at home that afternoon. Sat. Grace spiked a fever so we headed into Sick Kids instead of CVH since Grace had a bunch of pre bone marrow transplant apt. on Monday and we knew we would be admitted for 48 hours because of the fever. Grace's fever got as high as 40 and the antibiotic's could not seem to get it to break. She came back positive for a bacterial infection in her blood and her antibiotics were changed to reflect this discovery. A fungal "work up" (3 CT scans + blood work) then showed possible fungus in her lungs and she was started on an antifungal that resulted in another "all nighter" because of the possible side effects of this med and Ian and I felt it important to monitor her. Grace's CVL (line that goes into her chest to accommodate her chemo drugs) was pulled out (a short surgery) because it was possible that the bacteria was colonizing in it and these may have been lending to why we could not get Grace's fever to break. Finally once the line was taken out and after several med adjustments Grace's fever broke. And after all that we were able to bring Grace home for a quick get together for her Birthday yesterday. Her MRI results were stable (same as last time... one highlighted area) which is good news but we do really continue to hope that everything just disappears so we do not have to wonder if this spot is malignancy or scar tissue. The doc's say they don't know and they will only know if they go in. There are no plans to do this right now. Grace's pre bone marrow tests were pushed off but Sick Kids has received her umbilical cord (which we froze with Mt. Sinai) mid last week so we are ready to move forward with that when Grace is ready.
So the plan for the next little bit is:
Audio/GFR testing in next two days
CVL reinsertion Wed
Chemo (round 5) Wed/Thurs
Mega dose Chemo to begin 4 weeks from the start of round 5
Bone marrow transplant to follow Mega dose
Keep praying that our baby continues to get better.
Love,
Les
It's been a crazy couple of weeks. Where to begin??
Round 4 was uneventful (from what I can remember) until Sat. 21st. I was at home for a "night off" when I received a call from Ian asking me to return to the hospital because Grace had just had a seizure very similar to those she had prior to surgery. I raced back and we stayed up all night to monitor her condition. She had "shakes" all night that were very different from her other seizures but very concerning for Ian, myself and the doctors. First thing Sun. morning her Neuro Surg team ordered a CT Scan which showed us that Grace's tumour had not grown back and she still only had the one highlighted area that was evident on her last MRI. We were relieved! The Neuro Surg team referred us to Grace's Neurology team who immediately increased her meds and ordered an EEG for early in the week. Grace had her EEG Tues. morning which came back good and Grace has been stable (no "shakes" or seizures) since her meds were increased. We were released from Sick Kids Tues. at dinner time only to return to Credit Valley Hospital at 9pm that night because Grace's Inseflon (sp?) had come out. An Inseflon is a patch with a small tube that goes into Grace's muscle and that's where I inject her daily needle. A nurse at CVH reinserted her inseflon and took blood for a CBC because Grace had had a blood transfusion earlier that day at Sick Kids and we were not sure what her new counts were. On Wed. we received the news from CVH that Grace's counts were good and Sick Kids called us and asked us to come in for an earlier MRI apt on Thurs instead of the following Monday as originally scheduled. Thurs was uneventful at Sick Kids... Grace handled her MRI like a trooper and we did not see any doctors (always a good thing). Friday we were back into CVH for a CBC which showed Grace's counts low but OK and Grace had her first physio apt. at home that afternoon. Sat. Grace spiked a fever so we headed into Sick Kids instead of CVH since Grace had a bunch of pre bone marrow transplant apt. on Monday and we knew we would be admitted for 48 hours because of the fever. Grace's fever got as high as 40 and the antibiotic's could not seem to get it to break. She came back positive for a bacterial infection in her blood and her antibiotics were changed to reflect this discovery. A fungal "work up" (3 CT scans + blood work) then showed possible fungus in her lungs and she was started on an antifungal that resulted in another "all nighter" because of the possible side effects of this med and Ian and I felt it important to monitor her. Grace's CVL (line that goes into her chest to accommodate her chemo drugs) was pulled out (a short surgery) because it was possible that the bacteria was colonizing in it and these may have been lending to why we could not get Grace's fever to break. Finally once the line was taken out and after several med adjustments Grace's fever broke. And after all that we were able to bring Grace home for a quick get together for her Birthday yesterday. Her MRI results were stable (same as last time... one highlighted area) which is good news but we do really continue to hope that everything just disappears so we do not have to wonder if this spot is malignancy or scar tissue. The doc's say they don't know and they will only know if they go in. There are no plans to do this right now. Grace's pre bone marrow tests were pushed off but Sick Kids has received her umbilical cord (which we froze with Mt. Sinai) mid last week so we are ready to move forward with that when Grace is ready.
So the plan for the next little bit is:
Audio/GFR testing in next two days
CVL reinsertion Wed
Chemo (round 5) Wed/Thurs
Mega dose Chemo to begin 4 weeks from the start of round 5
Bone marrow transplant to follow Mega dose
Keep praying that our baby continues to get better.
Love,
Les
posted by Lesley at 5:32 p.m.
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