Been a rather long time since updated for Loki.
Loki is doing amazing!!! He is now in 5th grade, and doing very well. He is learning personal responsibility when it comes to catheterizing himself, and the new self lubricating catheters have helped with his infection level.
So many change's in the household I tell you..
Little man returned to school two weeks ago and is doing very well. He is catheterizing his neobladder with minimal asssistance but I think the concept of "adequate hydration and drainage" is still lost upon him.
His incision sites are looking much better but the scar from the superpubic tube is rather nasty and puckered inward. :( All things considered it is a minor thing, but it bothers him so very much; not so much cosmetically, but I am pretty sure he has an adhesion at the site in question. He has been complaining of periodic pain in the region. We are following up with urology today.
Loki is now off all medications related to the surgery. He is still on his ADHD medication even though it does not provide the same controlled as the stimulate based medications.
Loki's sister is having a journey of her own and I think I will be creating a blog for both of them. She has PDD-NOS among other things.
Wow. I didn't realize how long it's been since I posted. Loki is just finishing 3rd grade. His cancer is still in remission. We moved to a new state. There have been so many changes that have occured during this time. Too many to list right now. Let us just say that Loki is doing very well.
He continues to struggle in some subjects at school. He has had issues with his illieal conduit and left kidney. With the repeated kidney infections since Jan 2011, we sought answers for several doctors. Ultimately it was decided that Loki absolutely needed surgery to revise the conduit created when he was 18 months old. The conduit was no longer doing what it needed to do, and had not done its job correctly for quite some time.
Loki now has a mitranoff valve through his belly button into a neobladder. It was a rather extensive surgery with several complications. He spent a total of 18 days in the hosptial during this latest procedure. He has a range of emotions from happy to disgust to anger. It hurts when he is frustrated and tells me that he hates me. And demands to know why we did this. But we know it was necessary andI know he is confused, frustrated, and coming to terms with some serious changes to his body and self image.
The mitranoff should not leak. Loki no longer has an external pouch!!!! He does need to catheterize every four hours or so. Moving forward, I am hoping that this arrangement will increase his self esteem. He does have scars, external, internal, spiritual.... but hey, chicks dig scars. :) And that's what I tell him.
Good Evening All:
I am very pleased to say that Loki's scans are NED (NO EVIDENCE OF DISEASE). Loki will be 5 years in remission in June. His next checkup with be in 2010!!!!!!!!!!
Loki's next CT scan will be Feb 16th. This should be his last set of scans, all follow up will be blood work and ultrasounds from here on out. Otherwise he is doing well. We are still having attention and behavioral issues, as well as bowel issues. The bowel issues are likely a result of his original surgery. The behavioral may or maynot be related to the cancer and subsequent treatment.
He is a orange belt in karate, and doing very well in school. We are so very proud of him.
Loki had a wonderful summer. It was determined that he needed glasses at his yearly physical, so off we went to get some. He is doing wonderfully in school, and is very much the boy. Loki is talkative, creative, and active. It is so wonderful to see.
Loki entered 1st grade this past August and is having a very good time. At his September Oncology appointment, they saw no evidence of disease, and we were told that we are approaching the major 5 year off treatment point. That milestone will be reached in June 2009. After this point, Loki will likely be followed once a year with blood work and an ultrasound of his pelvis rather than the CT scans he has been receiving since diagnosis.
Loki had his 3.5 year scans today. I am pleased to say that they are clean!!!!
So, my lil' man is 3.5 years into remission, and we are over the moon!!!!
He was feeling kind of yucky from the CT contrast, but other than that he is doing very well today.
