Long day...day 2, dose 2 of antibody HU14.18

Unfortunately, today did not go well.  Lisa had lots of pain.    She was sedated, but not asleep when the antibody began to run at 9:30am. At the 15 minute mark she was restless and uncomfortable; and, once again, this pivotal time set the pace for the rest of the treatment. Her vitals went crazy and she started fussing. We got the oxygen going and she settled down a little bit but was obviously in pain.  As the time ticked by, the pain got worse...at the one hour mark she was crazy with pain and they gave her a second dose of morphine. Hour two was filled with lots of screaming and tears and I tried to wrap my brain around how much pain she must be in that she was still bolting upright even after the second does of morphine had kicked in. Hour three was a bit better and she seemed to get a bit of rest in between her waves of pain.  The fourth hour was excruciating to watch (and I'm sure to feel). Lisa was inconsolable and I was mentally sending up prayer after prayer to God and every saint I could think of and sending Mike a  "get plane ticket, come now" thoughts.  Towards the end of the fourth hour, the rash that appeared yesterday, reappeared with a vengeance.  Instead of just dots, she also had the color pink traveling up her body; just looking at her made me itch. Poor thing; she was miserable as she scratched and cried. The doc on call prescribed Zantac (say what?! it's normally used for reflux but apparently has great antihistamine blockers....who knew?) and it helped calm the rash down, but not the pain.  She continued to be in and out of pain for the next two hours even though the antibody had finished infusing.  At about 3:15, she finally drifted off to sleep and continues to sleep almost two hours later.  Thank God.

She has two more days of antibody for this round and if it's going to be like today, it will be very tough for us to get through.  I can't imagine the strain this puts on the rest of her body...heart, lungs, etc.  It's a very big shock to her system.  I pray that the time we put into this is worth it and improves not only her quality of life, but her quantity.

Please continue to pray...the days are long when a child is in pain and you can do nothing to help them.