Day -5

I was woken up at 5:30am to have some blood drawn and an EKG carried out. While the nurse was in, I asked her to wrap up my PICC line to keep it clean and dry so that I could have a shower.

Then it was the wait for my breakfast order, as I was quite hungry. After breakfast, the nurse returned to administer the pre-medication of steroid, Ativan, Mesna and Zofran into my PICC line. I was also given some anti-viral tablets. 

Now it was the wait for the Cytoxan (cyclophosphamide) which had been scheduled for 10:00am.

While I was waiting, Dr Burt and Amy Morgan dropped by to check on my progress. As we spoke, Dr Burt became increasingly distracted as he noticed a patch on my head that had become visible after my hair fell out. If I could have drawn his thought bubble, it might have read “It’s as I suspected, not CIDP”.

Amy Morgan and Dr Burt left, and Vineetha could see a group of them in deep discussion outside my room as she returned from her breakfast at the food court. 

Vineetha was called over and put under inquisition by Dr Burt, and as she walked back into the room her whole body was under complete stress. As she looked at me, her thought bubble read "You idiot! Should have worn the hat!".

I told her to relax and wait to see what happens.

Anyhow, at 10:00am the nurse returned and connected the Cytoxan to the PICC line, and so we were on our way for the next 2 hours.

During this time, a dermatologist had been sent by Dr Burt to inspect my patch. She looked at it and told me it was a birthmark, and left totally unconcerned.

The Cytoxan feed was over, and then it was time for some lunch.

Now it was time for the 10 hour feed of rATG (commonly referred to as rabbit ATG).

The Science Bit

So what is rATG? In layman’s terms, scientists gave some rabbits human T-lymphocyte cells, watched the rabbits’ immune systems kill them (the T-lymphocyte cells, not the scientists), extracted the antibodies the rabbits’ bodies created, and these antibodies would be administered to patients like me. The goal is for the rabbits’ antibodies to kill the patient's T-lymphocyte cells.

During the afternoon, I had unexpected visits from another dermatologist and the neurologist, Dr Allen. Both of them examined the patch on my head, and neither of them had any concerns at all. The relief in my dear wife’s face was a picture!!

I had been pre-medicated with Benadryl prior to administration of the rATG, and it had a similar effect as yesterday i.e. sending me to cloud cuckoo land.

By dinner time, the worst of the drowsiness had worn off, and I was coherent enough to have a video call with my daughters over Skype. We’re still missing them terribly, but I felt better after the call.

The rATG infusion has just finished, so it’s just the Mesna and saline drips for the rest of the night.

Tomorrow will be a repeat of today, with the same 5:30am start.

I can reflect on another successful day, with the worst effect being drowsiness. There was no nausea or pain, and I can only pray that this run of good fortune will continue for the duration ….

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• SA u need to write a book... ur totally descriptive, where was this talent hiding!?! oh, and congrats on the discovery of the birthmark! . Remain strong....and message to Vineetha....stop stressing so much.... as if u continue to do so...those sexy dresses won't look as awesome on u, as you'll start to look older then your years...if u stress so much...have faith, you guys are there, because this is meant to happen....wishing you both even more luck and hope for success! xxxx

  18 July at 05:41
• PN Reminded me of Omen. Birthmark hidden under hair. Take a picture if allowed. Lotsa love.

  18 July at 06:31
• WM I agree Ben you should write a book the daily reads are so factual and a very good read poor vinny bet the relief was immense for both of you keep up the good work looking forward to tmrw update xx

  18 July at 07:35