Tough week for Will

Will and I out in the 'snow' during Evelyn's Birthday party.

It has been a rather hectic week since we left for Vermont last Friday morning. Will was up all night getting sick on Friday and even this morning he was still dry heaving in the toilet. He started the last cycle of this therapy on Friday and yesterday was his last day of Temodar so we are hopeful he begins to feel better soon. He is not feeling well, he is tired, angry, lacking energy, and seeming experiencing more neuropathy than before as he has complained of pain.

He is having a Halloween party in school on Friday so we are actually going back to VT tomorrow. Therefore VNA was coming out today to do labs and he was fighting Dina over this as he woudl not put the skin numbing cream on his chest. Eventually he slapped her right across the face. Uggh.

After tomorrow there is just one more infusion/trip to VT and we will be officially D O N E with the TPI-287 trial.

It has been a very challenging period in our lives but nothing compared to losing a child to this disease so our tolerance for these things is always tempered by that reality.

I'm really starting to feel like the funding need for all of the NB work is like a house becoming fully engulfed in flamesd and all I can manage to do is toss buckets of water on it. It is getting a bit overwhelming and deflating because as wonderful as it all is the reality is that it is just never enough and I don't know how to fill the gap.

I'm hopeful that when we return tomorrow night that Will can get enough rest so that he enjoys his time in school on Friday. He is going to wear his costume tomorrow and to school on Friday so I' hope it is not in tatters come Saturday night.

Remember when Halloween was one night? Now it goes on forever and runs right into Christmas.