Victoria's BMT Journey to Cure: Frustrations

Day +343 Sudden clinic visit due to skin issue
Day +335 Follow-up clinic visit
Day +321 Clinic day

Recap on clinic visit on September 18th

WBC: 5.00
HGB: 11.0
Platelet: 239
Flu shot and pentamidine aerosol done
unable to phlebotomy due to a very sluggish port: tried TPA medicine but didn't work, may need surgery to revise a port soon or later
Discontinue Lasix
Keep cyclosporine at 0.5 mL every 12 hours
Start triamcinolone ointment to body and hydrocortisone ointment to face twice a day for rash
May give atarax for itching
Goal oral intake: 1.5 Liters of water a day

Her labs looked awesome but, I'm concerned because, Viki has been developing very dry, itchy and bumpy skin recently. I've showed some of following pictures to the Dr. and they thought this could be a sign of chronic skin GVHD(graft-versus-host disease). Since we are in the middle of weaning down on her cyclosporine (immuno-suppressive) medication, any immune related side effects that was inevitable would show now. Also, her EOSINOPHILS count (one of CBC indicators of GVHD level) almost has doubled in the past month. However, good news is that doctors didn't seem to worry much because it is still in a mild stage. They prescribed steroid ointments and wanted us to come back in two weeks.

Pictures taken 9/7 through 9/17

Recap on follow-up visit on October 2nd

WBC: 6.38
HGB: 11.4
Platelet: 213
Stop steroid ointments
Decrease cyclosporine to 0.4 mL every 12 hours

With steroid ointments, her bumps went away but, her skin was still very flaky, itchy and blotchy. Again, the doctor didn't seem to be concerned and still wanted to go down on her cyclosporine. We are only a month away from her 1st BMT anniversary and I thought we are almost there but, why this is happening now??? So Frustrating!!!

Pictures taken 9/27 through 10/1

Sudden clinic visit on October 10th

I called first thing in the morning and insisted on coming because, Viki's skin texture totally changed in the past week. Her skin looks a lot like chicken skin and it feels exactly like it too. In another word, she was a mess! Honestly, I was okay with all the rash, itching, and dryness of her skin but, the change of her skin texture, I freaked out and couldn't handle it any more.

Pictures taken 10/3 through 10/9

This is what I call a chicken skin.

And some parts of her skin got thicken

Contrary to my worrisome, the dr. didn't take me seriously at all. Instead, I was told that I should go see a doctor for my anxiety attack. How rude!!! I really didn't appreciate what she said. How could she say that to a mom that already went through so much? Every doctor we've seen in the past 6 weeks mentioned that this was GVHD but, no one is really bothering to do anything about it. They wouldn't even let me take Viki to the dermatologist. I'm so frustrated. I wanted to scream!!!

What they did this time, they increased cyclosporine back to 0.5 mL and switched the skin care to Aquaphor ointment. We will see how it does and what they have to say in our next appointment on the 16th.