Jeff posted earlier that our sweet friend, Luke, passed away peacefully yesterday afternoon. Laura, Luke's mother, wrote a beautiful journal entry on their website. We asked if we could share it with all of you and she said that she would like that. I just want to say that over the last few weeks I have had very strong feelings about Luke's journey...and how it relates to our own. I have felt the deepest sadness over this past week which began with our last encounter with John, Laura, Gracie and Luke at the hospital. After reading Laura's words, I have been put at ease. I feel a sense of calm and peacefulness and am grateful to Laura for that. Her ability to walk through this with such beauty has inspired me and made me feel safe. Here are those words:
SUNDAY, FEBRUARY 01, 2009 11:01 AM, CST
Luke passed away at home early yesterday afternoon. He was sleeping in my arms with John sitting right next to us. Gracie, FarFar, FarMor, his Aunt Marie, and his cousin Joe were all with us. It was the most peaceful thing you can imagine. He had been sleeping so sweetly in my arms, then he pooped :), then shortly thereafter I noticed his back was no longer moving up and down with each breath. There was no indication of any pain or discomfort or tenseness in his body, no cries, no grimaces. God and the angels came to him so sweetly, held him so close, and carried him away so gently.
Luke had been steadily moving in this direction for days now, but really in the last 2-3 days he was floating into a less conscious, more sleepy state. By Friday and Saturday we could only hope and believe that he heard our voices, felt our touches, sensed our presence and love. Things in his body were somehow taking a natural, steady course, and doing so in a very peaceful way. Friday was a beautiful day. The four of us took a nice walk to breakfast with Luke and Gracie sitting side-by-side in the stroller. After breakfast, Luke migrated to my baby carrier where so many of you have seen him so many times, and where he stayed for probably a few hours. John headed to work while Luke, Gracie, and I spent some time at the Calabasas Commons. We then picked John up at work and all walked home together. His peacefulness continued in the afternoon, at times resting with Dad and at times I was right by his side. Later that day, he was grabbing and holding our fingers with his little hands, as small babies do. Strangely, or fittingly, he started doing this on what turned out to be hours to days before his death. That night instead of putting Luke to bed at a more normal baby-hour, John and I kept him in our 'playroom' with us on a comfy pillow bed until we were ready to go to bed ourselves. As we mentioned, John and I had moved into their bedroom.We were positioned to sleep in between Gracie's bed and Luke's crib. On what would become our last night together, instead of putting him in his crib for the night, we put Luke's pillow bed right in between John and I, with us at times holding his hand, checking him, making sure he was comfortable, hoping our presence made a difference to him, knowing it made a difference to us. Gracie of course was right in the room with us. We like to believe he could sense all of it.
Saturday morning we continued to spend time with Luke. John gave him kisses, soaked him up, smelled his sweet smell while Gracie and I took a shower. Luke sat with me, then he rested peacefully for some time with his Aunt Marie and then his cousin Joe. He then returned to my arms, and was sleeping with me so sweetly for some time before he breathed his last breath. He really chose the perfect time to say goodbye. Having been so close to Luke for so long, we know him like the back our hand, and we feel something changed in Luke Thursday night. We believe even in the absence of drugs his pain really diminished or went away (Friday he went all day without morphine, with no indication of any pain). It was also in those last days that he somehow reached out through his unconscious state to hold our fingers and connect with us.
Quite shortly after he passed, John and I wrapped him in our favorite blanket (he already happened to be wearing favorite jammies) and took him to the hospital where, upon our phone call, our oncologist put into action our previously arranged plan to have his body autopsied within hours of his death. When we arrived to CHLA, we had some minutes to spare while they prepared for our Luke. In those minutes we finally had the chance to visit a park close by on a hilltop that we kept saying we wanted to visit. We parked and sat in the car overlooking the beautiful city on the beautifully clear, sunny day and soaked up every minute with him. When they were ready for us, we drove back down the hill to the hospital so Luke's body could be used for science. We are hoping that his tumor can be 'immortalized' in a way and that researchers across the country can use it to study neuroblastoma for years and years and years to come. She phoned us later to let us know that the autopsy had been completed and plenty of tumor obtained.
After passing this sweet, precious, angel of a boy, whose face and body was as beautiful in death as in life, to the nurse for authopsy, John and I came home and immediately went out with Gracie for a walk to our now favorite climbing tree where Gracie eagerly stepped up with Mom and Dad next to her to walk on her favorite branch. We continued on to the Calabasas Commons where Gracie got her favorite 'present' at RiteAid- band-aids and stickers. After we returned home, Gracie stayed with FarMor and John and I spent the rest of the evening together starting to deal with a new set of feelings. We drove and then walked up 'Stunt Road', where John and I got engaged and from which you can see the San Fernando Valley, Santa Monica, and downtown - a beautiful night from the 'mountain-top' -70 degrees, stars twinkling in the clear night sky that filled our lungs with much-needed fresh air. We then went to one of our old haunts in Santa Monica for dinner, where the four of us had spent many-a-time before he was diagnosed. We needed the time to be together and start working through what the last 6 months have brought to our lives.
This morning the three of us are up and together, and while we mourn and miss our boy to the deepest core of our souls and wonder how all these feelings will weave their way through the rest of our lives, we are together and we are alive and Luke is at peace. We are thankful to God for this day, and we will honor God and Luke today by spending it in a good way. While we grieve, we will also bond with each other, love each other, and somehow enjoy this precious day with beautiful pictures of Luke running through our minds. Dare I say we will even laugh? Yes, most definitely. On this gorgeous, sunny, 70 degree day, we plan to visit Malibu and enjoy the fresh ocean breezes.
The Piersol Family