Let's Get It Started

Jalen started his conditioning regimen to increase his cell counts in preparation for their debut later this week.  He's scheduled to received these injections daily until Thursday.  The Medical Team believes Jalen has Gilbert Syndrome (prounounced jeelbear).  Gilbert is a mild liver disorder that affects the break down of red cells in the body.  As a precaution, he will need to be monitored very closely during this transplant process.  Stress and anxiety are common factors in elevated bilirubin levels with Gilbert.  We fully understood the extent of Jalen's alarm and worry over having to be his sister's donor again.  We expressed our concerns and loosely suggested Jalen have some sort of contraption available that would allow him to inhale nitrous oxide or some sort of relaxing solution as needed.  It probably sounded crazy and over the top to them at the time, but after having Jalen retested and the level still being double where it was a year ago, we're having discussions about putting things in place to help eliminate his level of stress and worry.  Included in our arsenal of relaxing medicine, breathing exercises and numbing cream, we have now added freezing spray (basically the artic freeze for shot locations), an i-port (subcutaneous to eliminate multiple sticks) and the Anesthesia Team is on tap as needed.  The insuflon catheter (i-port) is awesome.  Having it placed, was not without opposition or tears (mine and his), but it made administering his injections today a breeze.  From zero to done in twenty seconds.  Go Jalen!  I love my boy and I'm so proud of him.

Today marks the beginning of the process.  Mireya's chemotherapy has started.  My heart is heavy.  It's difficult to leave the hospital and live your family life in this mode of separation.  It's already been a pretty long day and we're back at it tomorrow.  Continue to keep us lifted.  Special thanks to Lisa, Fran and the volunteers of Connors Heroes for pulling off the unimaginable....another amazing room for my Princess. Simply beautiful! Mireya LOVED it.  Makinley and Jalen also appreciate how you (as always) included them. Quentin and I also love the 'Parent Pack'. Thank you for making our space on the Unit feel like a lovely place to be, despite our days ahead.  You are a blessing to us and in the lives of so many children and families.