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This has been a long rough week on us all. It started with Kendal's funeral all week and on Thursday, January 13th... Ryken passed away... The photo to the left is of Ryken, he was so very precious to me and the moment I met his Momma, she was so stressed holding him and all I wanted to do was be there for them. It's crazy how yet we fight our own battles, yet God gives us the strength to allow others to lean on us. I kept telling Nicole about this little boy who just couldn't catch a break through his whole stay at Jude. I always felt like this family was under my wings. I kept close watch on him while we were at St. Jude and spent time talking with Christy his mother a lot. Ryken will always have a special place in my heart and in Nicholas' journey.
Kendal's services was incredible, there had to have been 800 plus people filling the church halls and walkways because there were no seats left. What an impact this child had in the 17 years of her life. How loved and how her strength has changed so very many people. Kendal, if I could have spoke to you before you left this world ... I would have thanked you for how hard you prayed for my son ... for showing us all to NEVER give up, not for a second, and mostly to trust that there is a reason for all of this suffering. I questioned that last week .... but it's like your mother said that you told her, "My battled had to be this hard for people to pay attention so it's going to be really tough one." I would have hugged you and told you how your faith inspired me and that I love you even though we didn't know each other ... I loved you still.
So he is all over the place walking everywhere, he's lost his appetite from this new chemo drug that's for sure. His counts ANC is 800 this week and hgb 11.0 and platelets 186. So all is well but we sure would like his ANC to be higher. Upon leaving Kendal's luncheon after the service Nick noticed Nicholas' shirt was wet .... AHhhhhhh immediate panic and stress - that meant something was wrong with his Mickey button. Even though he eats - we still use it for all his meds and extra fluid. So we got home and for about 2 hours I was pretty upset that I have to swap this out of his stomach and never have I once seen it done nor have I done it. I asked Jude to do it when I was there but they promised me it would last till we got back. Leneatha .... if your reading this ... I wanted to choke you for about 5 hours and then I calmed down ... we got him to sleep and I swapped it out. Add that to my new doctoring degree and nursing degree list!
Kendra (Nurse at Proton) , this outfit is for you girl! You said we couldn't leave Jacksonville without one and we didn't. I wanted everyone to see how great his lashes came in and his hair! He actually gets bed head now! He's looking like a healthy boy again thank you Jesus.
On top of that we have now narrowed it down to the "one" sippy cup he will carry around and drink from ... thank you Lord again. He is teething like crazy has like 4 new teeth coming in all at once and 2 upper molars in the back, ouch!
Dear Lord, I ask you to surround the Lividini Family and Bailey's as they have a permanent reminder of an empty bedroom, a voice and laugh they miss and the smell of their child's hair they can no longer smell that they will long for ... please give them strength and help them Lord to remember that our time here is limited, but our eternal life we will be able to be with them all again. Lord, I beg you to keep Nicholas cancer free .... let him remain this way Father ... As Nicole said in a post there are no magic words when a child passes, nothing with comfort what will be missed in the months to come. I pray Father that you keep our boy healthy and well ... and to comfort the families I love with your grace as they are forced to find a new "normal" without their children.
