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| November November 5 Aside from a week of non stop stress, I can't begin to express our relief from the news we just got.....The MIBG scan was negative meaning that the abnormallity along his spine is not neuroblastoma. The condition that Jacob has is called "Cronic Osteomyelitis" . Because of Jacob's weakened immune system he will need to be treated with IV antibiotics for 6-8 weeks and then put on oral doses for four months after that. This still means many hospital visits, but this we can deal with!! The Oncologists will be meeting on Monday morning to discuss Jacob's case and we will know what the plan is from there. Jacob's OMS is still active as well (Jacob received his regular IVIG and chemotherapy this week) and more than likely he will be put on the ACTH injections before we return home. This week has been tough both on Jacob and on the family....the Ronald McDonald House has not been a place of happiness, but of dispair. One of the families we have come to know over the past year is taking thier daughter home today for the first time in 6 months, the cancer is spreading so fast that she only has two weeks left, and they want her to feel the comfort of home. Another family is holding out hope that their daughter will make a two week deadline in order for precious stem cells to grow to hopefully save her life. We can only pray for our friends to find the strength to somehow go on each day, we have been blessed to have Jacob cancer free and hope that we will never have to face the choices that lie ahead should the cancer return. Thanks to everyone for their support over this past week....we are looking forward to returning home next week.... November 9 Well we are still in Ottawa, Jacob is being scheduled for another MRI this week and the doctors want to go in and do a biopsy of the site to have a final diagnosis and to make sure they are treating the infection properly (they met at the tumor board last night--we are not sure whether they still feel as though there is something to worry about or not---no one is talking!). Because of the location of the infection they are likely to have an orthopedic surgeon come in to do the biopsy...we are hopeful that this can all be done this week and we can get home next week.....Jacob is still getting his IV antibiotics 3 times a day at CHEO....his port only has to be changed every 7 days which we are thankfull for!!! Please pray that everything goes well with the MRI and the biopsy....I will update when we get results and know more... November 24 We are finally home from Ottawa and with good news.....We returned home last Tuesday after the tumor board meeting on the Monday night. Jacob has fluid build up on his spine and in his left hip now from the infection, and no disease was found on the MRI. Jacob will remain on the IV antibiotics until the 7th of December and then switch to a four month course of oral antibiotics to treat the Osteomyelitis. While in Ottawa Jacob's blood pressure also became an issue, and Jacob has been put on Lasix to help his body rid itself of excess fluid, and a blood pressure medication to lower his blood pressure. Becase of these new medications his blood pressure has to be monitored twice daily and blood work done once a week to check for electrolyte imbalances. We started home care here in Sudbury last Wednesday and I have taken over administration of the IV medications, this we are thrilled about---no more hospital trips for us...Jacob has to get his port-a-cath needle changed once a week in which he can have a bath in between treatments (this he loves)....Jacob only has one port working now, and the poor little guy is really bruised and swollen from a rough day last Monday at CHEO. His bottom port clotted on us and he was accessed a total of five times in four hours...a solution was pushed into the port to break up the clotts (called draino!), this took four hours to get 1.3ml into the site and then it was left for 24hrs at which point they gave up (we had given up hope the day before!). The condition is called a reverse clott full blockage in which a huge clott was working as more or less a trap door inside the chamber of the port-a-cath. We are lucky because Jacob has a double port and his top port is still working fine (we were worried that the blocked port meant more surgery for Jacob). We are due back to CHEO this Monday (Nov 29) for one more Chemo and IVIG treatment and follow up testing for Jacobs bone density tests. They have decided to try one more Chemo with Jacob in hopes that he will reach full remission from the OMS once the Osteomyelitis is under control. If this does not happen by the end of December then a descion will have to be made regarding the use of the ACTH injections and maybe a trip to the states for a consultation with the leading research hospital in Springfield. We are hopeful that this next trip to Ottawa might be our last until June of 2005 (Jacobs IVIG can be administered in Sudbury)....We are excited about the prospect of a somewhat NORMAL life back for the boys and our families.... |