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| March 2005 March 19 I can't believe I haven't updated the site in almost a month....time seems to have flown by. We were to start the ACTH on March 1, but that still has not happened..... Jacob has deteriorated again and his prednisone has been increased to every day and he is getting another IVIG treatment at the Cancer Center on Monday...Jacob also needed another bone scan the beginning of the month because of increasing pain in his back, the scan came back negative and we were releaved that the bone infection was not back....although it did not explain the crying spells about his back in which we still has......The ACTH in which we were to start on the 1st is not approved in Canada (as we found out 2 days before he was to start) and we have been working day and night along with Sylvie (our nurse at the Cancer Center) and Dr Murray, in order to get the drug here and then the bigger issue pay for it (ACTH costs $10,000 american for only 8 weeks---Jacob needs it for 8 months!). Mike's benefits will not pay for the drug because it is not approved in Canada and Health Canada only has a "special access" process which allows us to bring the drug into Canada, but does not speed up the process of getting it approved (which could take up to 18 months). We tried contacting the National Organization for Rare Disorders in which provides financial assistance in obtaining drugs for children with rare disorders, but they only provide assistance for residence of the USA....they gave us a contact for the Canadian Organization for Rare Disorders and we were hopeful, but the canadian version does not have the funding, and are still awaiting the government to pass a bill for the Orphan Drug Act (which would then allow them to provide assistance in obtaining rare drugs)......We are at the point in which we could cry....we are so frustrated with all of the red tape involved in getting such a vital drug for Jacob's health into Canada.... let alone find some way of paying for it. I will update as soon as we know when we can obtain the ACTH and how Jacob does as he starts..... April 2005 April 20 I am sorry to all who have been looking for an update in the last month (gosh I sound like a broken record!) i will keep the site updated weekly from today forward.....we have been working hard on getting the ACTH into Canada....Sylvie, Allison and Dr Murray worked for months and finally the ACTH arrived this past Friday (all the way from Great Britain)! We seem to have found a way to get the OMS under control somewhat while waiting for the ACTH, the IVIG every three weeks seems to be holding off the major neuological symptoms. Jake still has good days and bad, but we are praying that the ACTH will do the trick. The ACTH looks like Maple syrup in the vial, as I hold it in my hand I wonder how we can put all of our faith ino this drug. But that faith is what has got us this far and hopefully this will work. Jake gets two needles every day 0.5ml's for a week and then once a day for 6 weeks and then every other day for 6 months...it is so thick it is hard to even push into his little arm. It breaks my heart every time we have to give him a needle (he screams for us to stop, and I can't help but think is this worth it). He seems to be tolerating the treatment well so far (we are on injection number 4). Today he was a little lethargic, but is in good spirits. He needs a daily blood pressure check by homecare, and needs bloodwork twice a week, and his urine tested daily for glucose (this is quite a challenge!). With the ACTH also comes a lot of serious side effects, which can occur at any time, the most concerning are; high blood pressure, diabetes, conjestive heart failure, electrolyte imbalances, optic nerve pressure (blindness), depression of skeletal growth, osteoperosis, and permanent in-ability for the body to produce the hormone on it's own. We look forward to hearing from everyone, please leave messages in the guestbook (we still check every day).... |