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| August 2004 August 11 Jacob just finished his 3rd treatment for the OMS, he received more Chemotherapy along with the IVIG and it was decided that the prednisone needed to be decreased. Because of the high dose of prednisone Jacob has been on for a month and a half he has what is called 'Cushing Syndrome" (basically he is retaining a lot of water)...his poor little cheeks look as though they are going to explode! Jacob has been doing well since my last update he is slowly gaining strength back again and has actually started taking steps on his own. Although we still have a little ways to go to reach full remission, the doctors feel as though he has made it sixty percent of the way (which is a huge gain in a month!) The ACTH will not be needed yet (and hopefully never) if Jacob continues to improve each month. Jacobs hair has also started to come in and is actually getting quite long in the couple months that it has been growing....we are slowly getting our happy little boy back and I can't find the right words to express how excited we are. We are due for bloodwork and regular checkups at NEO next week.... Although our trip to CHEO went well...yesterday morning one of the families we have come to know well at the Ronald McDonald House got news that their daughter's leukemia had returned. She had just finished treatment two weeks ago and was excited to go to school in September for the first time since January of this year. She now requires aggressive Chemotherapy and a bone marrow transplant at the Hospital for Sick Children in Toronto. I mention this in hopes that when you pray for Jacob that you could also pray for little Erika and her family to find strength to make it through her next round of treatments. |
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| Jacob at home the end of July (those cheeks!) |
| August 22 I was hoping to to be able to type the words 'remission' in this next update...but unfortunatly I can not. Jacob has made no improvement since the last treatment and the OMS has actually gotten worse. He walked for two days following the chemotherapy and actually started sleeping a little better, we were very hopeful. Since then Jacob has deteriorated and can now only walk with assistance and is very irritable...the dramatic decrease in the prednisone is thought to be the cause of the irritability and has been increased again to a higher dose and a stronger drug has been added to help decrease Jacob's chance of developing ulcers. We went for a routine check-up last Tuesday at the Cancer center for bloodwork and a doctors visit and on examination Jacob's abdomen was tender and an ultrasound was ordered (everything has since come back normal--but was a source of stress last week). His bloodwork came back fine with the exception of a couple liver function levels (which were high) which is caused by the chemotherapy. In our quest for treatment options for the OMS we have read accounts similar to Jacob's in which the treatment can reach a plateau and no new gains are made towards total remission. We are hoping that this is not the case with Jacob, and that the increase in prednisone will help eleviate some of the relapsing symptoms. We are due back for our next treatment September 6th and will be down in Ottawa for about a week and a half....Jacob is due for his 3 month MRI and testing for the neurblastoma. This is a little wierd...3 months cancer free....but yet still in a battle with his body and on active treatment for the OMS!!! I haven't actually thought a lot about the neuroblastoma and the fact that there is still a threat of relapse with cancer...but this is something that we will have to live with for the rest of our lives..... |