I am finally able to write fully what is going on here with Eli.
We have been warned and told that specifically this round of immunotherapy is EXTREMELY painful and best case scenario is that it gets done over the 10 hours a day for 4 days but they allow for 20 hours a day because most people can’t tolerate the pain so they slow it down or even shut it for periods of time.
Immunotherapy as I understand it (and yes I’m probably not exactly correct) is thru cancer research they have realized after injecting mice with neuroblastoma the mice with their own antibodies have been able to fight it and be cured without treatment. What they are ultimately doing is injecting these antibodies to help the body have more weapons if CV the machla ever tries to come back. So basically they are taking antibody from mice and injecting it thru IV into the human body. Since the human body doesn’t have the same genes or antibodies that mice do, the body tries to fight this and that’s what causes the pain. This weeks antibodies were 2 different ones when its usually only 1 antibody that’s why its generally the most painful.
So here’s the story: We prepared ourselves emotionally, physically and every way possible to make it in our heads as easy as possible for Eli and ourselves. I’m not sure in what or whose zchus but putting it mildly we may of had the easiest week in CHLA since Eli was diagnosed. To say that it was pain free is an understatement. Not for one second did Eli have pain and the DRs and RNs were completely shocked as they have seen kids have less pain then others but to have none is never seen. He didn’t push his morphine drip button once. In comparison the first week of immunotherapy Eli was pushing it almost as often as it allowed him to.
The IV ran every single day and not once did it need to pass 10 hours started at 12 noon and was done every day by 10PM. Aside from a few fevers which are almost for sure going to happen and 2 blood transfusions this week couldn’t of been more picture perfect as far as the DRs are concerned. They didn’t want Eli off the floor as they needed to monitor him for CV any side effects. But Eli said to bad we are going for a walk outside which we do every day they allow and he’s up to it and we did just that and felt so good after.
The reason I did not elaborate all week was simply for the fact that whenever we celebrated anything early the next day didn’t turn out the way we would of liked. And being that this week was planned as being the hardest and was the easiest I didn’t want to have any ayin horas.
Eli was visited by a few friends and he appreciated and enjoyed every single one of them. He was in a great mood which BH lasted all week long. He also has a new addition to his bed as he got a new HUGE teddy bear with the words “WE LOVE YOU KING ELI” from his aunts and uncles and he loves it.
We look forward to leaving CHLA for IYH a 3+ week break of immunotherapy. Eli hasn’t had a normal night sleep all week as they need to give tylenol every 4 hours and check vital signs every 2 hours. They also had him on medication at night which caused him to use the bathroom more often then usual so all in all we haven’t slept all week and we look forward to making up for it over Shabos and the next few weeks of “vacation”.
The plan is after a night of observation and his TPN IV is done to be discharged sometime in the AM hours on Friday. As long as Eli has the strength which we hope he will have the plan is to send him to school as often as possible for as many hours a day that he can handle starting next week.
This is all great news and we hope the news always stays as good if not better for Elimelech Ben Basya as we continue helping him get to the ultimate goal of a refua shelayma. Please as always continue to have him in mind in all your tefilos.