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| September 6 Sorry to leave everyone hanging after my last upddate....Mike decided to work on installing a 'video card' onto the computer by himself and the computer has been out of commission since then! We arrived at the Ronald McDonald House today and both boys were excited to play with all of the new toys! Jacob has been walking on his own again for a little over a week and he is much happier. He still has a lot of nausea, but seems to be gaining strength back. We will await his blood work tomorrow morning in hopes that all liver function tests are normal, he has an MRI scheduled for friday morning to see how his neck has healed from surgery and to make sure that no new neuroblastoma has formed. We have been enjoying the last week with the company of friends and family and have actually gotten out to camp with the boys....I will keep updating this week from Ottawa as things unfold and hopefully we will be home by next week if all goes well..... September 14 Back at home and Jacob is making more gains towards remission....Jacob's bloodwork again came back with some abnormalities in the chemistry (his creatine was elevated) and a GFR was ordered before his treatment could begin last week. The GFR is a kidney function test in which Jacob is injected with a traceable chemical and then blood is taken three times 45min apart. The test came back normal and Jacob received his regular dose of Cyclophosimide and IVIG and we were able to be discharged on Wednesday morning (the nurses voted Jacob the cutest and the LOUDEST on the floor!!) We saw the 'bone' doctor on Thursday afternoon (Jacob had to have 3 x-rays on Tuesday to determine his bone age), we were expecting the worst and actually got some good news. Jacob's bone density although decreased is still 0.4 above the average. He does, however, have to start back on vitamin D drops and I have to start taking 1200mg of calcium a day to help decrease his chance of more bone loss. He will get follow up x-rays every three months to monitor the effects of the steroids. The MRI was on friday morning at 8am...Jacob woke up at 5am (NPO at 4am) and Mike and I couldn't sleep anyway. Into the car Mike went and Jacob was back asleep until 7am. Because of Jacob's fluid retention the anestesiologist decided that they would use Jacob's port-a-cath (they didn't think they would be able to start an IV in his hands or feet). Only one of us was allowed to stay in the room this time while Jacob was put under (I was fine with that I hate watching...I was out of there) they used the gas mask to "relax" him...not put him completely out which they normally do...and then accessed his port (which was not frozen) and then put him under with the general anesthetic......I could hear him screaming down the hallway and wondered what was going on.....the mask did not work!! The MRI was to determine if there was any neuroblastoma in the neck or head starting to grow again and the results will take about 10 days. We are a little anxious, but know that if there was anything wrong we would have already had a phone call..... We are due for bloodwork in Sudbury this week and are enjoying watching Jacob return to the boy we knew four months ago.... |