Owen’s Leukemia – Day 125

We had a clinic visit today.  He was scheduled to get PEG- L-asparaginase this morning.  They do it by IV and it takes one hour to infuse.  They monitor his vitals every 15 minutes for 2 hours, and for the first 15 minutes, the nurse needs to stay in the room.  This is because it is really dangerous if they have an allergic reaction to the medicine and typically, if you are going to react, it happens within the first 15 minutes.  It took us approximately 7 minutes for him to react.  They hooked him up and started the pump and not long in he said “Mommy, my heart is beating really fast”, and seconds later he turned almost neon red and started coughing (because his airway was constricting), then he vomited.  We went from having one nurse in our room to about 6 in less than a few minutes.  They gave him benadryl,  prednisone, pepcid, zofran, and saline, all to counteract the effects… what an incredibly scary situation.

So, he only got about 4cc in him out of the 50 that he was supposed to receive, so it didn’t “count”.  We talked to the head of the Oncology Department since our Doctor was caring for inpatients on the other side of the floor.  He was explaining the chemo medicine and what are options are going to be.  They obviously can’t give the PEG again due to the reaction, but the asparaginase part of it he most likely will be able to tolerate.  The thing is, the PEG part has a longer 1/2 life (which means it stays in your system longer) of 2 weeks, where the asparaginase he would need to get more doses.  This used to be the protocol before the PEG was transitioned in, so it is still efficient at killing the cancer cells.  The bad part is that he would need to get it 3 times a week for 2 weeks and they do it by giving him a shot in his thigh.  Apparently, in Europe the do it via IV and have been doing it for years, but it isn’t standard practice here in the States yet.  There is a current study that is going on, and Children’s Hospital of Pittsburgh is participating in it, so that might be an option for Owen.  I think that sounds so much better than having to get it in his leg.

After Owen’s nice 1 1/2 hour nap at the hospital, we got to go home… well, actually to Nanny’s.  Thankfully, Nanny was with us today since Jeff had to work.  I don’t know what I would have done without her there.  On the way home, Owen said “I want to go to Poppy’s Daycare to play”!  Poppy has been a HUGE help in watching Logan all the days we go to the hospital.  I think Owen thinks he is missing out when Logan is there and he isn’t.

Tomorrow we get a break, but back to the hospital Wednesday for more chemo!