Monday, August 25, 2008

YEP it's GVHD

Tyler had an appointment at U of M today and we were not suprised when they told us he has gvhd on his shoulders, arms,back and chest. Possibly some on his face. Of course it is still in his mouth and also in his eyes. Now the trick is to keep it under control! Dr Yanik described it as balancing on a balance beam. Lean too much to the right (no gvhd) hodgkins would probably come back, too much to the left and gvhd could be life threatening, we want him right in the middle!Of course they don't wish for gvhd but they have found that chronic gvhd may ward off lymphoma from returning. We were told that hodgkins can come back, generally in 6 to 12 months, and maybe that is what is going on and maybe that is why this is really kicking in because it see's it as an intruder. Problem is it see's other cells as enemies also.
Anyways he is feeling ok, just some dry mouth,eyes and skin is dark and patchy. He has steroids by mouth and to put on his skin and some to rub on his lips and inside his mouth. They have increased his Tacro (anti-rejection) meds and magnesium. We go back on next Tuesday and they want to check his lungs.
I want to thank everyone for checking in.
I also want to thank all the doctors,nurses,technicians etc,etc,etc, at Toledo,Sylvania and Ann Arbor for always taking good care of Tyler!

Here is a web site that shows some of what gvhd can look like etc.

http://www.marrow.org/PHYSICIAN/Patient_Care_Post_Tx/PDF/QuickRefGuidelines_cGVHD__screening_Part_II.pdf

Kelly

Saturday, August 23, 2008

Just an update

Tyler started college and really seems to like it although he said a couple of classes are pretty long. He has four classes, three on M,W and two on F. I think just being able to attend school is something he really missed (Can you believe missing school?!).
We have an appointment on Monday at Ann Arbor (just a check up) but we have noticed his skin getting kind of red and patchy. No real bad reactions to it but just different. We went on marrow.org and it kind of looks like more GVHD. Hopefully this is as bad as it gets and it kicks in that graft verses lymphoma effect!!!!!
We also have an appointment for his younger brother Ryan for his knee. Looks like torn cartilage according to the MRI. The doc said may need surgery. One thing after another.

I also want to take a minute and give thanks for such good friends and family! There are so many of you that I couldn't begin to name you all (I include you all as either friends or family :) or both!!! We are truly blessed for all the caring,love and support.
I want to thank the amazing young man who gave his time and his cells to give Tyler another chance at life! Your are truly a great person!

Please make sure to keep all our young friends in your prayers.

Some extra prayers for our friend Ryan S. who is having a little scare right now. And also for Nicker who is fighting a great fight against wilms, baby carly, Chelsea C, Nick (breakthru) ,Allen who is back in the hospital (he has been in for months).And Tex's mystery (hopefully they will figure it out). Also Evan S who grandma lives where I work, hope all is going well with his transplant!

Congrats to Chelsea for her new Job and starting college!You Go Girl!!

Colleen K congrats on your new school,have a great year and "Don't break anything"!!!

And "HI" to Amy and Megan F, I hope Megan is doing well! CALL ME (Not Saturday mornings, I am at work until 2:00)

Also a big Congrats to Jody Madaras, we're missing ya! Hope the tour is going well!

Love to all

Kelly and Tyler

Saturday, August 9, 2008

August 9, 2008

Well we went to University of Michigan. Everything looked pretty good but it looks like Tyler is getting some Graft verses host disease (GVHD). All his blood work up looked good, but inside of his mouth is some whitish bumps that we believe is GVHD. Tyler said he didn't realize it was there except he did feel that his mouth seemed dry.
Right now the doctor gave him some penicillin in case of infection (which they say can happen in liver etc.) and also he is back on Bactrim as long as his counts stay up. As long as his GVHD doesn't get carried away he should be ok. Right now we are on a watch and see how he does. If it starts getting bad he'll be put on steroids and increase his tacro (anti-rejection) and he will be back on stronger restrictions.
We go back on Monday the 25th unless things start getting bad. So far he feels ok.
This Monday he has an appointment with our local college about getting him in and maybe get him into a program with a lesser work load.I know it's going to be difficult getting into the swing of things again for him.
John has alot going on for him this week being I have a full work schedule. Tyler also needs a MRI on his knee for a bump that has been giving him some trouble and Ryan has been in therapy for his knee that he first injured back in the spring. And then the college appointment! CRAZY!!!
Well thanks everyone for checking in
KJC