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| October 2004 October 6-Back from Ottawa and Jacob's 5th cycle of treatment for the OMS. We arrived in Ottawa on Saturday and were met by friends from Peterborough, Joshua and Jacob's favourite playmates Dawson and Caleb. The boys had a great time playing at the Ronald McDonald house. Dawson and Joshua got new "rocket cars" and played with those for the whole afternoon on Sunday...Joshua still hasn't put it down!. Jacob was admitted Monday morning for his IVIG and Cyclophosimide and we had a little scare with his Port-a-cath. When the nurse accessed his port the two needles were put in, but with no blood return....they had to pull both needles out and poke him again two more times and still no blood return . This meant that the port might not be working, and he was sent for two chest x-rays. To have a chest x-ray Jacob is put into a sausage like seat and belted in screaming (it looks very uncomfortable). His mornings ordeals were over by lunch time and we got the word that the needles were in the right place and that the port was OK. The Chemo was delayed a couple hours because the specific gravity of his urine was too high (meaning he wasn't hydrated enough) ...Jacob now pees in a cup....so getting a urine sample from him has become much easier!!! Everything got under way by 3pm and by supper time Jacob was not feeling well.....he hadn't drank much all day and now did not want to eat....the supper tray was too much for him and he started throwing up.....we decided to give him some gravol and he was out for the night by 7pm. Dr. Johnson (one of Jacob's oncologists) came into the room shortly after that and asked if I could come into the hallway to talk about the results of the MRI....I thought do I start to cry now or wait until I reach the hallway (the doctor making a special trip to talk to me about the MRI just couldn't be good news) She began by saying that the radiologist had reported that his TUMOR had decreased in size since the last MRI (what do you mean decreased he had had surgery in June to take it out)....my knees felt weak at this point. Because of this finding they had taken his scans to the tumor board on Monday to discuss the findings and they found no evidence of the tumor on the scans....Confused now (I was) They are not sure what the radiologist was looking at, but she assured me that Jacob's tumor was infact gone.....it left me with an uneasy feeling, but we have to place trust in the doctors. Jacob slept straight for 14 hours and woke feeling a little better....we were discharged around 11am and soon were on the road back to Sudbury...Jacob slept again for another 2.5 hours and the trip was thankfully very uneventfull..... We are to see Dr. Murray tomorrow in Sudbury because of a concern with Jacobs gait. He has been limping since Sunday and they are a conserned he might be in some pain from the high doses of prednisone he is on. I will update as the week progresses....... Thank you to everyone for their continued support....Mike and I are both back to work now and are finding life a little more NORMAL inbetween Jacob's treatments.... October 12 We have seen Dr. Murray twice at the cancer center since returning from Ottawa with concerns about Jacob and his condition. Jacob is still limping, they figure that the source of the pain is in the left hip. The x-rays taken last week show no sign of a break or any abnormality, so an MRI has been ordered for next Wednesday here is Sudbury (we are happy we don't have to go to Ottawa). The MRI is being done to rule out anything major. At this point the cause of the pain could be a number of things ranging from a tumor to just plain joint pain from the prednisone......lets just say we are hoping for something simple and fixable....I can't take any other news at this point! We are a little nervous and we can't help but worry about the possibility of the spread of new cancer...please pray that the MRI next week will be normal....I will write a new update as we get the results.... October 23 It is Saturday night and Mike and I are getting ready to go back to the hospital for 10pm for another round of antibiotics......Jacob has been in the hospital since yesterday and we are now out on pass between antibiotic treatments (they are 8 hours apart). Jacob had his MRI on Wednesday and CHEO called and ordered a bone scan, so friday morning we went to the Sudbury general hospital to complete the testing that was ordered for Jacob's limping. Jacob was an angel for the testing and Mike and I couldn't believe how well he did. We had a bad feeling when the bone scan was ordered that something was wrong......we got a phone call at home at 2pm from Dr. Murray....there were "hot spots" on the bone scan and the MRI showed an abnormal area on Jacob's left side just above his tail bone (along the spine)....I thought I was going to be sick. ....CHEO was called and at this point they are going to treat him with heavy doses of antibiotics in hopes that this is a bone infection. They can not rule out relape Neuroblastoma so CHEO is going to want Jacob in Ottawa by the end of this week for more testing. If the antibiotics do not take care of the "abnormalities" shown on the scans then he will have to undergo a biopsy in the area to rule out more cancer (neuroblastoma). Jacob has received 5 doses of antibiotics so far and is showing no sign of illness (because he is on such high doses of prednisone this prevents him from developing fever and inflammation at the sight). .... I will update when we know more at the end of this week and we have a firm diagnosis...... October 29 We are still in hospital for antibiotic treatments here in Sudbury and are going to be flying out via air ambulance (yes I have to get on one of those 'little' planes again!) early Monday morning for CHEO. Jacob will have his regular treatment of IVIG, but will not be given his Chemotherapy until they know what is going on (they will also be continuing the antibiotics). He is scheduled for an MIBG scan Tuesday and Wednesday, and will get the injection for this Monday morning when we arrive. The MIBG scan will detect neuroblastoma cells in the soft tissue and will tell us if in fact there is tumor present. A bone biopsy will more then likely be done as well. I will keep everyone posted as we get the results this week.....please pray for Mike and I to have the strength to make it through this week.....Thank you again to everyone for their support and prayers in our time of need, we wouldn't be able to do this without you... |