More info

We found out more info on echo: Injection fraction is 63% and Shortening fraction is 45%.
In other words he still has a NORMAL heart!!

http://www.acor.org/ped-onc/survivors/cardio/cardiotests.html

Tyler also started ECP Photopheresis today and he said it was a breeze! Hopefully it will do it's job against GVHD. I asked what an "average" length of time would be for doing ECP and I was told an average could be 18 months to 2 years! But... it might start at every 2 weeks then eventually be changed to 3 weeks, 4 weeks,once a month, every other month. It also could be a shorter time or longer just depends.
Also blood work looked good
Alt on it's way back down
WBC a little high (caused by gvhd we think) but not too bad
Platelets a little low but not bad
Over all another good day!!

Love to all
Kelly

Woo Hoo!!!

We got a call from Dr Stein, she said PET CT Scan looked good!

NO SIGN OF RELAPSE!!!!

He's only 6 months out but I was very worried this time!! Don't know why but a feeling that we needed to get over this hump!

Heart Echo was good(45%?)don't understand the number but we were told it was good,down a little, but good.

Pulmonary Function test, not back yet but the tech thought it was down just a little from March but still normal range.

We go to University of Michigan tomorrow and I'm sure they will explain more.I was at work when Dr Stein called so I couldn't ask everything I want to know.Also tomorrow we start ECP Photopheresis. Here is a web site that kind of tells about it.

http://www.photopheresis.com/patients/index.jsp

This one below goes into a little more detail look under general background pages 1,2 and GVHD page 5

http://www.cigna.com/customer_care/healthcare_professional/coverage_positions/medical/mm_0320_coveragepositioncriteria_photopheresis_extracorporeal_photochemo.pdf

Thanks everyone for the prayers!!

Kelly

Bone Marrow Drive

2008 NASCAR Foundation Blood and Marrow Drive

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http://www.marrow.org/ABOUT/Your_Contributions/Hendrick_Marrow_Program/index.html

Hi
Ryan , my younger son had his knee surgery Friday and is doing well! He was so funny after they gave him his pre-meds. He said and did such goofy things. The nurses just loved him! He is at a homecoming dance at this moment, beieve it or not! I think he's going to be sore afterwards but what do I know, I'm just mom!

Kelly

Michigan Renaissance Festival

Scans and photpheresis

Tyler had his appointment at UM today.
This was just a re-check.
His GVHD looks better but still there and his liver enzymes (alt and ast) are elevated enough to put him back on actigal. Also his white blood cells and his glucose is elevated. From what they told us this is probably from the gvhd and some from the steroids he is on. Funny (not really) he went from about three pills twice a day to about ten pills twice a day in about 2-3 weeks.
But he is doing good and we are going to start photopheresis on the 18th. So far he will do this 2x a week every other week until they feel he doesn't need it anymore (if it works or doesn't). The hopes are to get him off steroids before they do damage to his body.
Also PET-CT, PFT, Heart Echo on the 16th. We will post when we find out results.
We're feeling all the love and prayers coming our way!
THANK-YOU
Kelly

Another day

Another day at U of M. Appointments went ok. Tyler's GVHD is of concern to the doctors. They are afraid it will get away from them and get into his organs and so forth. They increased his Tacro (anti-rejection) meds to 2.5 mg a day, new steroids Medrol,64mg a day, Flucmazole for fungal infections and another cream for his face. They also would like to start some treatments called ECP Photpheresis. This is where they would take your blood from one side of you, seperate T-cells (part of your white cells that fight infection, cancer etc) expose them to UVA light, and return them to his system. The result is suppose to stimulate the treated cells to attack cells causing disease. Like a vaccination. There is a lot more medical gargan that goes along with it and there are many sessions.Tacro limits the cells, kind of keeps them under control, Steroids kill off cells, thats why they're limiting amount, and this ECP trains cells (basically).
It's all well and fine, but Tyler so strong and so in control, had a breakdown after we left. He would not be happy if he knew I said anything,but I told him it was good to get it out. It's so frustrating for him! He just would like a chance to be a normal kid! Even if he is 19 now, he hasn't had a chance to be just a kid since 10th grade! I am helpless, I can't "make it all better" isn't that what mom's do?! I have always tried to help my kids work thru any problems they had, and I guess that's all I can do! Be there for him. It's just so unfair how these kids have to go through this!

Thanks for listening
Prayers appreciated
Throw in few extras for those fighting this awful disease

Kelly