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| January 2005 January 2 We headed into Christmas with good news with Jacob's MRI, although it showed infection now in his right hip, the infection in his spine and left hip are gone. Because of these findings we escaped more IV antibiotics and Jacob has been put on a 4 month oral antibiotic treatment (4 times a day 40ml in total).....Jacob continues to be nauseated daily, but is doing fairly well (he is fighting a virus at the moment and has had a fever since yesterday, which hopefully will pass in the next couple of days).... I can't explain how nice it was to be at home for Christmas with our family....the boys were spoiled by every family member and our house was filled with piles of wrapping paper and laughter. We are due for IVIG treatment and a consultation with the team of doctors January 24th at CHEO, we will decide if Jacob can continue on with tappering the IVIG treatments. We also got news today of the passing of another friend of ours....Renee, 16yrs, passed away at the Ottawa General Hospital December 28th after her struggle with Leukemia. Please pray for her family as they try and deal with her passing.... January 16 Jacob has been going a little down hill since my last update, he has started havng night attacks again and has been really irritable.....he had to have his IVIG treatment here in Sudbury on Thursday January 6th (2 weeks early), which entailed a five hour day at the cancer center. The infusion went really well and we are on day 10 post IVIG......the IVIG takes 11-14 days to work. We are waiting for day 11 (which is tomorrow) to see if the IVIG is going to stop Jaocb's irritablity....his eyes have really started to dance again as well. CHEO has cancelled our next visit on the 24th because he received his treatment here....we are on a day by day basis as to how well Jacob is doing as to when we will need to return. The next step if the IVIG does not help relieve the OMS symptoms is going with the ACTH injections and maybe another type of Chemotherapy.....we are still considering a trip to the OMS institution in the states if his condition worsens over the next couple of weeks. Thanks to everyone for the encouraging comments in the guestbook.......the support and love is what gets us through the rough days..... February 1 Since our last update (sorry for the delay) Jacob had another MRI to check for bone infection and I am happy to report that the infection is GONE! Jacob is now off the antibiotics and we couldn't be happier. We had a meeting with Dr. Murray regarding Jacob's OMS last week because of Jacob's relapse when we tried to lengthen the time between IVIG treatments. Jacob had another IVIG treatment yesterday at the Cancer Center, which went well. Now we have to decide whether to continue with our current course of action or whether it is time to try the ACTH. There is also a spinal Tap that can be done to determine exactly what cells are involved with the OMS, which would have to be done in the US. We found a contact at Sick KIds in Toronto, who is affiliated with the institute in the US. Dr Murray is going to contact him to see if the test can be preformed in Toronto. (which would be nice!) Jacob had a rough month, but is doing well right now. He is happy to play and 'fight' with his brother at home, and we have been enjoying our very extended time without a trip to CHEO!! February 21 Jacob celebrated his 2nd birthday on Valentine's Day, he was so excited to open his presents and blow out the candles on his "construction" cake....it was so nice to see. I will add some pictures to the picture gallery soon!! Jacob has been battling returning symptoms from the OMS the last month and it has been decided to start Jacob on the ACTH injections. In the last two weeks we have gotten the opinions from doctors in the states (St Judes) and Sick Kids in Toronto....all of which say that Jacob needs to be put on a different protocol to try and get him into neurologic remission. Jacob's eyes have started to 'dance' again and he doesn't get much sleep. We have been trying to hold off on the ACTH since he was diagnosed last June, but finally the time has come. The new protocol will last for a total of eight months (until this October) Jacob will receive a needle (either in the arm,leg, or belly) twice a day for one week, then once a day for 6 weeks, and then every other day for 4 months, and then he will remain on the every other day dosing for another 2 months but the dose will slowly be tappered. He will also receive the IVIG infusion once a month for at least another year. With the ACTH comes a lot of blood work and monitoring becuase of the likelyhood that he will develop severe complications such as weight gain and fluid retention, diabetes, high blood pressure, GI bleeding and electrolyte imbalances. We are hopefull that the ACTH will help to get Jacob into total remision and ultimatley get him off medication by next year.....I will update when Jacob starts on March 1.... |