Daylight come and me wan' go home
Rhab, me say Rhab, me say Rhab, me say Rhab
Me say Rhab, me say Rhab-a-a-doh
Daylight come and me wan' go home
This has been going through my head all morning with the voice of Harry Belafonte, clearly capturing the nuance of this short word for rhabdomyosarcoma in place of Day-o.
We just sent our son Zachary off for his fourth surgery since diagnosis Rhabdo, at 7:00AM. This one is scheduled for a full 8 hours. They plan to remove any residual tumor(after radiation), remove 6 to 8 teeth (due to chemo and radiation rotting them away), remove most of the bone in his jaw joint, reconstruct the jaw joint with a prosthetic if there is enough bone left to attach. If there is not enough bone they will wire his jaw shut for 4 to 6 weeks and then build a custom approach to his jaw.
Rhab, me say Rhab, me say Rhab, me say Rhab
Me say Rhab, me say Rhab-a-a-doh
Daylight come and me wan' go home
This has been going through my head all morning with the voice of Harry Belafonte, clearly capturing the nuance of this short word for rhabdomyosarcoma in place of Day-o.
We just sent our son Zachary off for his fourth surgery since diagnosis Rhabdo, at 7:00AM. This one is scheduled for a full 8 hours. They plan to remove any residual tumor(after radiation), remove 6 to 8 teeth (due to chemo and radiation rotting them away), remove most of the bone in his jaw joint, reconstruct the jaw joint with a prosthetic if there is enough bone left to attach. If there is not enough bone they will wire his jaw shut for 4 to 6 weeks and then build a custom approach to his jaw.
The reward is survival for hopefully a long time. After all this is why we do this. Or perhaps we do this because we all need something to believe in and even though the treatments all come with their various outcomes (I could say treat as in TREATment but having a deformity does not seem like a treat) we know that if we do not continue to pursue this aggressively, Zach will not improve his prognosis for a long life.
We simply ask that you pray for us today as well as the surgeons and the staff and that God guides their hands to be excellent and give Zach a better prognosis. We also ask that you pray for other families that face the same circumstance. We ask that you pray for anyone that has a struggle that has turned their world upside down. There seems to be so many things that are happening to so many families job loss, sickness, loss of faith, a loved one passing and just general despair over what is happening in the world. We are facing such despair (for now) but no different from many others.
We do however believe that life is full of more delightful times than horrific times. These life changing events just magnify the fact that life is really good and that we are reminded of what a really magnificent world we have.
Thank you Plainfield, our family and friends, Mikey Corbett Foundation, Bear Necessities, Chicago Bears (Peanut Tillman) Make A Wish, Zabiki family, our friends at Rhabdokids, and anyone else we may have forgotten.
Please see the latest pictures from an outing with Charles Tillman of the Chicago Bears and his Charles Tillman's Cornerstone Foundation.
Love,
Kevin, Paula, James, Zachary, Gage and Sierra (a smile that radiates like sunshine, that fills our hearts with love.)
