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| October 2005 Happy Thanksgiving....... I haven't updated in a while, which is a good thing! Jacob has been doing really well, he is gaining muscle strength and has made it to the weaning point without any major side effects. Jake has been seeing a physiotherapist and speech therapist every three months for evaluation, and last week he started a speech therapy program. Physically is is still age appropriate and is going to contine to be followed every three months in case he starts to fall behind. He has just started to fall behind in his speech so hopefully with the help of the speech therapist he will be able to enter into main stream when he starts school in a couple years. We had our appointment with Dr Murray last Tuesday to start our two month weaning protocol with the ACTH. We are to report any return of symptoms immediatly, and hopefully we will be able to get Jake off the injections the last week of November. Jake is very swollen from the fluid retention, and has flat lined in his growth over the last year, so the sooner we can get him off the ACTH the better. All along we thought that Jake would just catch up in growth when he got off the medication, but at this point because he has been on steriod treatment for so long, he will have some permanent growth issues (Dr Murray put it in simple terms---he will not be a 6 foot baseketball player!). At the end of the weaning process Jake will be tested to ensure that his body is able to make the ACTH on its own...if not he will likely have to go on a suppliment of hydrocortisone for 3-4 months. So far so good, although Jake had a really bad night last night...hopefully this is not the start of something bad.... Jakes weaning schedule remains at one injection every other day, but the dose decreases every two weeks. I will update as the wean goes on and hopefully in November I can write the best update in two years.....he is off medication!!! Thank you to everyone for thier continued support....this means the world to us. November 26 Well we have had our ups and downs this past month...... To start the month off we had a huge scare with the ACTH. The supplier in London, England was on back order and we were down to our last dose.....Friday I spent about four hours on the phone to California (where they actually make the ACTH), London, England, and back and forth to the Cancer Center. Finally after pouring my soul out to companies accross the world....the medication was scheduled to be on a flight to Toronto the next day (we didn't even have enough medication for a full dose on Saturday)......We called Air Canada on Saturday morning to ensure that the medication was on route as planned (it was to be in at 4pm that day).....they couldn't find the medication (It never made it to the Heathrow airport)....I now frantically called the supplier, the cargo company, Air Canada at Heathrow....and for two hours I couldn't get a hold of anyone....at 12:30pm I called Air Canada in Toronto back.....and finally they found the package, but it had just been dropped off at Heathrow and had missed the next flight out, and all fllights until Sunday were booked solid....It could be at the Healthrow Airport for days.....I tried Air Canada in London again...and FINALLY I reached someone....I begged, cryed, you name it and the Air Canada employee promised to go down to the cargo area himself and put the ACTH on the next flight out which was to land in Toronto at midnight Saturday. OK Mike and I leave Sudbury at 6:30pm on Saturday to pick up the ACTH in Toronto (oh did I forget to mention Customs was another story----our pediatric nurse and the pharmacy had to send a signed letter to customs stating that we had permission to pick up the medication...). Mike and I finallly make it to Toronto around 10pm...go out for a well earned drink and a bite to eat and head back to the Hotel to get some sleep beside the Airport. We wake at 7am...and hurry over to Air Canada Cargo to hopefuly pick up the ACTH smoothly.....We find the place (a challenge in itself!), and the person at the counter says that there is no record of the letter to customs and they can not release the medication to us.....the look on my face must have said a thousand words....(thank godness we had a copy of the letter with us)...he eventually finds the OK from customs and we are sent over to get cleared (this is in a different building). Customs turns out to be the easiest of all and we are out of there in about 10 minutes. We return to Air Canada and finally get to "HOLD" the package. Mike and I feel as though we should be getting ascorted out by our own security team...and secure the ACTH in the van and head for home.....I think by the end of the weekend we both lost about 10 years off our life... Jake didn't adjust well to the last dose change and had to be brought back up to the previous level, his new plan for weaning is now only by 5 units every two weeks (which means we take a little longer to get off). We should have plenty of ACTH in the one vial we just picked up....I can't go through the stress of needing another vial in a crunch!! So far so good on the new schedule and Jake returned to normal right after we increased the dose again (he had become very lethargic and was passing out on us two or three times a day....due to low levels of the ACTH in his system). He is doing really well in his speech therapy and is really happy to go to school like his big brother!! We are going to be in Ottawa the first week of December for our scheduled testing and should everything go well we will be back for following weekend. Jake will be receiving his IVIG, and the MIBG scan over 4 days. The MIBG scan will pick up any Neuroblastoma cells if any are present. The boys are getting very excited for Christmas....and we look forward to seeing everyone over the holiday season!! |