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| December 2005 WISHING EVERYONE A MERRY CHRISTMAS AND HAPPY NEW YEAR...... Our week of testing the beginning of the month went smoothly, and we just got results....everything was negative for Neuroblastoma!! Jake loved to see all of his friends at the hospital and it was nice to be there for a short visit!! The protocol for Neorolastoma is now officially over!! Jake will be re-scanned again in June of 2006 at CHEO, and will be monitored yearly with MRI's for his OMS. Jake's protocol for the ACTH will not be over until the third week in January 2006....we are trying to go down by 5 units at a time to try and minimize the chance of relapse. Jake has had a rough last week.....he has been having a lot of episodes, but has caught a cold and we are hoping that is what is causing the symptoms we are seeing. He has become very irritable and is starting to wake again in the night and is not able to get back to sleep..we noticed his eyes starting to bounce again on the weekend, and he has started his back arching again. It is tough to see him like this again after all of the gains we have made with the ACTH. We are keeping out fingers crossed this is not the start of a full blown relapse..... Our tree is overflowing with presents and we can not wait to see the look on the boys faces when Santa comes this weekend...please drop by for a visit over the holidays and say hi......hoping everyone has a great holiday season! January 2006 January 20, 2006 Jacob has not had a good start to the New Year....On Christmas Day Jacob started relapsing with the OMS...ahd three days later he was into a full attack. We took Jacob to the Sudbury Pediatric Unit on the 27th of December for an emergency infusion of IVIG....but after just 15min Jacob had an anaphylactic reaction (his face swelled up and he got hives all over his body...thankfully his airway didn't close over). He had to be given IV Benadryl and also hydrocortazone, which counteracted the reaction he had. Because of the reaction Jacob was unable to get the IVIG and we were sent home. By this point Jacob was again crying upwards of 10 hours a day, he had developed tremors, his eyes were bouncing, he was sleeping only a couple of hours a night, and he was beginning to try and hurt himself....Mike and I were beside ourselves and were not sure whether we could make it through another attack like this....Dr Murray agreed that we needed the opinion of the specialist in the US at the National Centre for Pediatric Myoclonus, and an urgent consultation request was faxed off the beginning of January. We will travel down to Springfield, IL on January 31 for a scheduled consultation on Feb 1, 2006....a spinal tap will be done and various other tests to determine down to the cellular level what kind of OMS we are dealing with and what the best course of treatment will be to try and get Jacob into remission. On Jan 6th Jacob returned to the Pediatric Unit to try a different kind of IVIG (this kind takes 8 hours to infuse and is a more diluted solution)...and thankfully Jacob did not have a reaction and he was able to have the infusion. Jacob was also put back on the ACTH injections every day to try and get his symptoms under control. To date he hasn't shown much improvment and Mike is the only person that Jacob will let near him.....which makes for long days for Mike (Mike has been unable to go to work since the beginning of January---we tried a couple days and I ended up having to take Jacob to the firehall just to calm him down). Jacob's blood pressure has been a big problem since beginning a high dose of the ACTH again, and his meds had to be doubled. Jacob has also been started on Trazadone which is an antidepressant to help him sleep at night (this is given 30min before bed and it knocks him out for a good 10 hours most nights). Jacob has also started to have what is thought to be hallucinations due to the inflammation in his brain....when he eats he takes a bite and wants the food back out of his stomach, he wants his skin off, he wants his arms and legs off....and he has started asking to die....all of this has been really hard to deal with...but we try not to take the things he says to heart and try to remind ourselves that it is the OMS causing his brain to miss-fire. We are anxiously awaiting our appointment in the states to hopefully receive some good news with treatment options. Jacob likely has "T" cell invovement which is the hardest to treat and there are not as many treatment options available. We have been doing a lot of late night research and a stem cell transplant is something we will be discussing at our visit. Thank you for everyone's thoughts and prayers in the last couple weeks....we are thankfull for all of the support we are receiving during these hard times... February 2006 February 8 We left on the 31st for our appointment with Dr Pranzatelli in Springfield IL, our trip from Sudbury to Toronto was funded by Hopeair, and volunteer pilots flew us from Sudbury to Toronto on the 31st and back from Toronto to Sudbury on Feb 2nd. Hopeair is a not for profit organization that connects patients and families with free airline service for medical appointments within Canada, they are funded by Air Sponsors and Corporate Donors. Pilots volunteer their time and airplane to fly patients to thier appointments, which is amazing. We booked our flights from Toronto to Springfield with United Airlines and our trip down and back went very smoothly. Our appointment with Dr Pranzatelli was excellent and it was very apparent that they had a lot of experience with children with OMS. Dr Pranzatelli took a very indepth history from me while the nurse practitioner took Mike and Jacob out in the hallway to do developmental testing. We learned heart breaking news in our appointment....every time Jacob relapses it means another 2-3 years of treatment. Our appointment lastest more then two hours and at 11:30 we were taken downstairs to day surgery to have Jacob's spinal tap done. The hospital's policies were very different then we were used to in Canada, and we were not allowed back to the recovery room when Jacob woke up.....this meant that by the time we were called back to see him he was in a complete attack. It took 4.5 hours to calm Jacob down, and Mike and I were not impressed with the way he had been treated. He was left with bruises on his face and chest (we still are not sure from what). Jacob thankfully had no side efffects from the spinal tap itself and we were able to return home as planned the following day. Dr Pranzatelli called on late Monday night with results of Jacob's spinal tap, and as suspected Jacob has high B and T cell involvement. With both B and T cells involved Jacob's OMS is very difficult to treat. Dr Pranzatelli is recommending that Jacob go on two Chemotherapy protocols, Rituximab and 6-MP. The Rituximab is infused once a week for four weeks and the 6-MP would be started at the three month mark. Rituximab depletes the body of all B cells for 6-9 months, which means that Jacob would be at high risk for serious infection during the first 6 months and up tp one year after the first infusion. The 6-MP is given at a low dose and would decrease the circulating T cells. Jacob will remain on the ACTH injections every day at a high dose until he is symptom free and then they will try reducing him to every other day and slowly tapper the drug off from there. Jacob will also remain on the IVIG infusions every four weeks. If Jacob relapses or if the treatment does not work, Dr Pranzatelli is recommending that we try a procedure called Plasmapherisis, in which a catheter is inserted into Jacob's neck and he is put on a dialysis machine to filter his blood and the B and T cells would be removed manually. If Jacob fails both these treatments then at that point a stem cell transplant would be offered as a last resort. We will be meeting with Dr Murray to discuss all of our options...and we will be starting on a new protocol hopefully next week. Jacob is still very ill and is continuing to go down hill. Although his rage attacks have decreased, he still requires Mike to be with him 24hrs a day or he goes into a full attack. The tremors still plague him with use of his extremedies, and he only walks when forced to. Our guestbook is not working at the moment (the sponsor is having problems with spam mail and is fixing the problem)....please feel free to leave us messages on our home e-mail at mdsquarz@sympatico.ca ... |