If At First You Don't Succeed

One of Our Favorite People Stopped By

try, try again.  Day 2 of Apheresis started off with a bit of uncertainty.  There was concern because Jalen's white cell count dropped significantly from the day before.  Although the white count was low, another cell marker almost doubled, which was very positive.  The decision was made to proceed with harvesting Jalen a second time and if necessary a third time to get what was needed for Mireya.  Regardless of what was harvested the second time, Mireya was scheduled for the transplant later in the day.  A second transplant would be coordinated for the following day with the additional cells collected. Jalen was in favorable spirits.  Since the lines and IV were already in place, it was simply a matter of connecting him to the Apheresis machine and starting the harvesting/collection of his cells. Within the hour, it was apparent Jalen needed something to allow him to relax and/or rest to complete the process.

Jalen is very inquisitive, he needs to know specifically what is going on at all times and why.  What I observed is, even though things have been explained to Jalen, he is still waiting for the unknown to occur.  As a result he was very restless.  The excessive movement caused the machine to stop on more than one occasion.  I asked the Doctors if they could give him something to help him calm down so the harvesting could be completed in a timely manner.  The medication took effect and Jalen's  disposition changed to agitated and argumentative.  He started talking very roughly and without care.  I then asked if they would give him something to allow him to sleep.  Within minutes he was asleep and the process was well on its way. Three hours later, and the harvesting was complete.   We now had to wait and hope we got what we needed.  Within an hour, the Head of Pediatric Hemoc came in to tell me we got more than we needed.  They collected over 7 million cells in that sitting for a total of over 9 million cells.  Thank you Lord!  Jalen needed the additonal day on the GCSF for his levels to peak.  Enough cells were collected from Jalen for two full transplants or one transplant and two boosts.  Amazing!  Those additional cells will be stored off-site and available in the event they are needed again. We're believing that will never be the case for us.  

Jalen will need to eat lots of foods rich in folic acid and receive iron supplementation twice a day for about 3 months. His hemoglobin took quite a hit during this process too.  He will need to take it slow for a few weeks, but Jalen is otherwise healthy and we expect his body to replenish those cells soon.  The PICU team had hoped to remove all of Jalens lines (i-port, iv and the line from his leg) while he was still asleep or at least coming out of his rest.  It didn't quite work out that way, they were about 15 minutes shy of a more peaceable situation, but we were finally able to get it done.

Jalen had to be monitored for another four hours before he could be discharged.  We would not be able to see Mireya before her transplant.  A second transplant day is not necessary because all the cells were assembled and given during the scheduled transplant.  Quentin and I were communicating from opposite ends of the hospital, keeping one another abreast of what was going on with both of the children.  Reya had been given a medication in preparation for the transplant that altered her otherwise sweet disposition and had her bouncing off the walls, ceiling and floors.  By the time Jalen was discharged, it was late and the transplant was complete.  Mireya was visibly tired (bouncing off the walls for several hours will do that to you).  We were all exhausted.  Jalen and I didn't go to bed until about 3am, because he spent the majority of the night hallucinating about glittery things floating in the air, spiders on the walls and some sort of little black things squirreling around in the clock.  Drug side effects are no joke.  Quentin and I quickly said our good byes with hopes that everyone would settle down for a good night's rest without issues or incident.

I'm extremely proud of Jalen for all he has endured to help preserve his sister's life.  He can't fully grasp the magnitude of what it all means, but he knows he's done a good thing for his sister.  Last night he wept, telling me how much he loved his sister(s) and how he never wanted her to be sick again.  The totality of his emotions seemed to surface at that time, it was truly a heart wrenching moment. 

The next few weeks are critical in this process.  For now we wait.  We wait for Mireya's body to accept the cells (the love and the prayers behind them) and for engraftment to occur and her counts to increase. We appreciate the prayers, posts, calls and messages.  Continue to pray over this process and for Jalen and Mireya as their bodies recover, heal and spring forth new life.