Today we have a plan......home. Julia has improved clinically and is responding well to the IV antibiotics. Her counts continue to be bottomed out but she has been afebrile for 3 days now. I negotiated with doctors to let us go home and continue the antibiotics at home. Julia's nurse will come in twice daily to administer the IV antibiotics at home and we will come back for clinic on Friday for follow up. She will get an antibody infusion this morning called IVIG in an attempt to boost her immune system. Crossing my fingers she does not have a reaction and we get home as planned.
This has been an extremely hard couple of days as I have watched a 4 year old little girl lose her battle with this deadly disease. Last night a beautiful 4 year old girl died (2 doors down from us), as her poor little body just couldn't fight anymore. Julia and this little girl have been in hospital together over the last year and were neighbours a lot of times. Her mother hugged me so tightly the other day in disbelief. I just broke down, there was nothing I could say to this poor mother as she watched her baby girl slipping away. She sat on her bed crying and screaming making sure her little girl knew how much she loved her. The life in here is beyond explainable. And if you've never been touched by cancer you can not even imagine what these poor kids endure and than to lose the battle after fighting for so long and so hard is heart breaking. I can not bare to see one more innocent child lose their battle. I have seen more children die in 3 years than most of you will in a lifetime. As I sit here crying for that poor mother I am overwhelmed with fear. Fear that this deadly disease can strike at any time and despite the fight these kids give its not always enough. How could life be so cruel. The mother said to me yesterday "how do I leave here without her". That comment hit me hard as I could not imagine coming in with your child and leaving without them. I realized that as much as some days I am tired of this place and just don't want to be here, without this place would mean I would be without Julia. The thought is too much to bare. So no matter how many days we spend here or how many times we keep coming back I realized that as long as I'm here so is Julia. I have spent a lot of days in the past 5 years asking God WHY? Last night I spent it in Julia's bed holding her as tight as I could thanking God for giving her the strength and asking him to always give her strength to overcome what is thrown her way. I am a complete emotional mess today.
I ask that you all say a prayer for that little girl's family as they deal with the most devastating event life can bring. I pray that God gives them the strength to go on. My thoughts and prayers are with them all.
I will keep you all posted on Julia and how her time at home is.