Welcome to Travis' Web Page. It has been provided to keep people updated about Travis' life with FSGS, otherwise known as
Focal and Segmental Glomerulo-Sclerosis
Travis is 13 years old. He has a younger sister, Krystin, who is 10, and a younger brother, Tyler, who is 5. This website was started to keep everyone updated about Travis' disease, but really, how it affects Travis is how it affects all of us. It's about our family.
When you read the journal entries, the history starts at the bottom and the most recent entry is on top.
APRIL is ORGAN DONATION AWARENESS MONTH!!!!!!! Organ donation saves lives! Someday, someone will cure my son of kidney disease...that person could be YOU!!!! Be an ORGAN DONOR!!!
Please look at Travis’ smile quilt! Thanks to all of the Smile Quilting Angels!
Destiny’s CaringBridge Page This cute little blonde is seven years old and was just recently diagnosed with FSGS. Destiny and her family could use some nice words left in her guestbook if you could take a moment.
Kolby’s CaringBridge Page Meet Kolby! This cutie-pie is 7 years old and has FSGS, too! Check out his page and sign his guestbook!
Cole's CaringBridge Page Cole is a 9 year old boy with FSGS also. Please visit his page and sign his guestbook, too!
Manu’s Transplant Headquarters If you need or want to know or find out anything kidney related or transplant related in general, you need to checkout this page! Thanks, Manu, for ALL you do!
FAQ for people new to Travis’ history. This idea was directly stolen from the webpage of one Cutie-pie named Kendrie
What is FSGS? Focal Segmental Glomerulosclerosis (FSGS) is a type of Glomerular Disease, one of many diseases that affect kidney function by attacking the glomeruli, the tiny units within the kidney where blood is cleaned. Glomerulosclerosis (gloh-MAIR-yoo-loh-skleh-ROH-sis) describes the scarring or hardening of the tiny blood vessels within the kidney. --That is the technical simple definition. Kendrie’s mom Kristie called Kendrie’s cancer their “suck-fest”. FSGS is our “suck-fest”. I guess “suck-fests” can turn up in all forms!
Is Travis on dialysis? Not yet. Kidney patients need to have somewhere in the range of less than 20% total kidney function to be on dialysis. Travis, thankfully, is not that far right now.
Is Travis on a transplant list? No. Kind of like the dialysis scenario.
Does this affect both of his kidneys? Yes. Doesn’t that just suck?
How long will treatment go on? As long as it takes. We’ve already been treating Travis for over TEN years. There is no “textbook” treatment. Different kids with this disease respond differently to different medications and combinations of medications.
What medications does Travis take? Currently Travis is taking Prednisone and Prograf and was on a 4 week course of chemotherapy with a drug called Rituxan in February 2006. He also just completed a second 4 week course of Rituxan in January of 2007! Prednisone is a steroid that Travis has been taking consistently for 10 years. Prograf is actually a transplant drug (also known as FK506) that we use to further suppress Travis' immune system. Travis has also taken Cytoxan (a chemo drug), Cyclosporine (a different transplant drug), and very very high doses of IV Solumedrol (steroid) at different times as different forms of treatment.
What are the side-effects of all those medications? The most visible side effect is weight gain. Steroids in children are vicious. Ever feel like you are beating your head against the wall? Steroids make you hungry ALL the time. They also make you retain water, which makes you heavier as well. Couple that with a kidney disease that makes you swell with water retention and the results are not pleasant. Other side effects of steroids are mood swings, inability to sleep, headache, blurry vision, etc. Cytoxan made Travis' hair thin, Cyclosporine had the opposite effect and made him more hairy. IV Solumedrol, well that is a more potent form of Prednisone and at the dose he got...let's just leave it at saying "it wasn't pretty". Prograf, thankfully, hasn't had any visible side effects to date, but has been shown to damage the kidneys in long-term studies...how nice is that???
Will a transplant cure him? With an auto-immune disease that affects the kidneys (which is what FSGS is) a transplant is only a treatment, not a cure. His immune system could effectively cause a transplanted kidney to leak protein and we could start this whole process all over again. The odds are 50/50. Doesn’t that just suck, too?
So, what would they do then? Give him another transplant when the time came. There are people with FSGS who have had three kidney transplants. Visit Nephcure.org to find out who!
So, will Travis ever be “cured”? Lord, I hope so! Much like a cancer cure, once Travis is in a med-free remission for more than four or five years, he will be considered cured. Although, there are adults who were diagnosed as children and went longer than ten years without a relapse or medicine only to have this disease to come back. Unfortunately, Travis' remissions are all controlled by medication. Someday though, we have hope, that he will get there.
If I think of more FAQ’s, I’ll post them here. I think I’ve covered the basics…now if only I could get some business cards to hand out to people who ask me questions. Then I could say, “No questions today, please see the web-page!”
For now, all of my non-medical updates are being moved to a new blog. Visit us at My New Blog to keep up with us.
Journal
Thursday, April 24, 2008 A corner...
It looks like we may be turning the corner. Travis' urine protein is very slowly abating. Agonizingly slowly. This is really good considering that in the seven days between infusions Travis gained 15 pounds of water.
Yes, I was panicked. And everyone knew it. Kevin and I had a conversation planning who would be in Pensacola with Travis on what days when Travis was admitted. It was that bad. But, luckily the drugs caught up just in time and that never came to fruition. And it looks now like the worst HAS passed.
He's not quite in remission yet, but I'd hazard the assumption that he is headed in that direction. We have increased his lasix doses to assist in the fluid removal. We've taken off about 8 pounds in the past couple of days. Travis says he's going to try getting on the ellpitical machine for a few minutes each day to help his sore muscles.
Putting 15 pounds on in a week canNOT feel good! So, as we down here in the South start to breathe again, please know that those of you who have needed our thoughts sent your way have always had them even when we needed them, too!
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