Fun, Fun, FUN!!!

Hi all
I thought I would update after all appointments this week.We started the week Monday at UM with ECP Photopheresis. The nurse had some difficulty getting a vein and ended up giving Ty a nice bruise but other than that it went fine.

Tuesday he had an eye appointment at Kellogg eye center. Ty's eyes are very dry but his vision is still very good. The doc said to continue with the restasis eye drops but to schedule regular eye drops in through out the day at least four times a day. She also told us to watch for other issues being they are starting to wean on the steroids.

Today he had a BMT clinic appointment and ECP. His Immunoglobuling is low (325) which are basically his immunities, ability to fight off infections and viruses. Next Thursday he is going to be infused with Ivig which takes about 6 hours. Needless to say, Tyler was not happy about it! But they have been watching it and it has been going down. They say that's not unusual after a transplant. They were surprised when we said Tyler has never had it before. After three years of treatments and two stem cell transplants the most he has to be infused with is one thing of blood and that is it! He is not the usual transplant patient.He is also having a slight issue with his glucose level. It was the most it has ever been, 238 (the most we have seen is like 140). Steroids can cause diabetes so here is another thing they are going to keep an eye on!Tyler wasn't thrilled with this news either. He was rather grouchy at our visit. I think the stress just starts getting to him!
The rest of his counts were:
Calcium a little low (unusual)
Protein a little low
ALT 55
AST 17
LDH 321
WBC 11.5
HGB 14.6
ANC 9.9
Also they cut his steroids down again 64mg evey other day.

So then off we went to ECP and had a little issue with getting the IV started. She continued to poke and prod into his arm and I had to step in also because she was so determined to show she could get it in, she really made it miserable for him! The other nurse kept saying she could get it in the other arm,but to no avail she wouldn't listen to her. Then she put it inside his fore arm which continuously hurt him and we told her it had to come out! GEES!!! Don't get me wrong she is a nice enough person but.... I think we will just not let her do it anymore! Two times (days)is enough!!! So anyways he got his ECP and they had to watch his BP because it tends to run low and it did get to 93/52. That same nurse insisted he needed a big kit instead of the small, don't know why because it still took as long as before and they still had to watch because of his BP! I still don't see the benefit and I don't think I was the only one who thought that way!
Around 6-6:30pm we were on the road for home. Another LOOONG DAY about 10 1/2 hours including drive time!

Well thanks for checking in! We appreciate the prayers!
Please keep all our cancer friends in your prayers!
Including:
Nicker (wilms) praying for NED
Carly getting through her treatments
Nick B had a hard day at UM the other day
Allen with his cGVHD and has been in the hospital alot
Chelsea I hope scans come back NED
Evan just starting with cGVHD
and all our UM,Toledo Childrens, LLS board,caring bridge, carepages and Web magic board friends who are all fighting their battles so bravely!
It's so sad there are so many!
And to Babyhope who earned her angel wings may her family find peace!
Kelly