Charlotte's Journey

I stared at my blank screen for a while. There are no words that sound sufficient. Austin's miracle we all prayed for was not meant to be. His family had to say goodbye to him yesterday. Thank you for joining us in praying for this family who has come to hold such a special place in our hearts . The faith that has poured out of his mother while on their journey to heal Austin has been awe inspiring. Can we all please pray for them to find some peace and comfort that surpasses all understanding? I truly believe Gods grace will blanket them as evidence of HIS love for Austin and for them. They will have to go back home to florida without their little boy. I had hoped we would be able to play once they were out patient sometime, and maybe they could be pen pals of sorts after he went back home but when I think about all of the hopes and dreams his own parents would have had for him that will never come true... I cannot make sense of this. I cannot imagine the pain and anguish. I do

There is a little boy who sits up coloring, paying the closest attention to fine details while slowly honing his fine motor skills as he becomes quite the color master artist extrodinaire. He smiles a playful smile while flirting with his nurses that he calls his girlfriends. He doesn't know that the doctors have told his parents that they have done all that they can and all they can do now is keep him comfortable.  He doesn't know there is an invasive infection overcoming his lungs and that his medical team has run out of ideas as to how to help him recover. All he knows is that he is surrounded by loving and caring people. He knows no fear or worry. But his parents have reported there is little hope now. They need a miracle to save their son. They believe it may be time to start saying their goodbyes and to help their daughter in this process as well. But as I write this post to help pool together all of our collective prayers, Austin is still here. Still awake and alert and

After we arrived at our hotel in Philadelphia Sunday night, there was a mother in the lobby. She watched us as we checked in, smiling at Charlotte. She softly said "can I ask? what does she have?" The hotel was a mile from The Childrens Hospital of Philadelphia so I knew in that instant she was probably a mother of a sick child too. Brian told her "Neuroblastoma" and she said "my daughter too". Then, a 9 year old daughter hopped into her lap, curling up looking sleepy. She then asked us a question that still haunts me. She asked, "Is this her first time having Neuroblastoma?"  In my mind I thought to myself "YES it's her first time! How many damn times does someone need to have this damn disease!" And then my heart sank. I knew it then that her daughter had beaten this beast and was now fighting a relapse. Anger started to flare briefly but not at this tired mom but at this notion. We are here because we believe what we are doing gi

It should come as no small surprise that when we asked for prayers for a little boy who is special to Charlotte, our village rose to the occasion, lifting Austin and his family up as they go through this unimaginable time in the PICU. Please keep thoughts and prayers focused on Austin as he continues to be in the fight for his life. The latest update states that multiple invasive infections have caused severe lung damage, hindering his own capability to breath and sustain healthy oxygen saturation. There is still hope alive that the team, who is working with specialists elsewhere, can create/alter medications to help stop further spread of infection and subsequent damage. Keeping him stable and letting medications clear his lungs are key, but the family has prayed for a miracle as his lungs have been so badly damaged that they could be looking at difficult long term quality of life issues and even impact overall chances of survival. This made me think about the word miracle . I believe