04/30/2014

Well it has been a quiet few weeks for Evan.  He did well with this first leg of the full round of Chemo and blood work that was done on 04/22/2014 showed that the Chemo did an excellent job of killing off his white cells and hopefully any derelict sarcoma cells.  His ANC level was 0 (yes zero); he did have some mature white count but the emerging "baby" white cells were the 0 part so anything times 0 is 0.  He has been receiving Neupogen shots daily to try to stimulate white cell production but it had not happened as of Monday 04/22/2014.  He was schedule to return to clinic on Thursday 04/24/2014 to recheck white cell levels again and for the next round of Chemo if the ANC was in the range appropriate to do so.

I picked up Meghan, Evan, Matthew and belongings on Thursday 04/22/2014 and dropped them off at the clinic and came to work.  I figured his ANC would still be in the dumper and I would be leaving work early to take them back home.  Well I was correct about taking them back home but not for the reason I thought.  It seems there was a miscommunication on Monday about the next scheduled round of Chemo which was actually scheduled for 05/01/2014, he wasn't due to have the treatment just blood work.  The really good news was the Neupogen was working nicely as his ANC was 5252 and he could discontinue the shots.  This discontinuation of the shots makes Evan very happy as the shots do hurt.

Meghan also received a phone call from the surgeon that performed the resection of his tumor to find out how Evan was doing with the arm and how it was functioning.  Meghan let him know that he was doing fine and was treating his arm as if nothing happened being in pain only if he moved it a little too much.  He advised her that Evan could discontinue use of the sling and use it only if she thought it was warranted.  This made for another happy milestone for Evan as he could finally put on his shirt the "regular" way.  He was also elated that he could finally take NONO the giraffe by his right arm and put his tail to his nose like he could prior to him breaking his arm.  Life is good for him and the small things make all the difference in the world.

Eli's birthday could now be celebrated without the necessity for Meghan and Evan to be in the hospital.  The original plan was to have Frank take Evan and Eli to Legoland on Saturday to celebrate Eli's birthday and we would watch Lanie.  On Tuesday 04/29/2014 we would go to the Hampel house to open presents, have dinner and cake.  It would not be the best way to celebrate but given the circumstances it would have to suffice.  Without the hospitalization, the chance to celebrate Eli's birthday in a much better way was now a possibility and the parents decided on a surprise.  Meghan and Frank took the all the boys to Medevil Times jousting theater on Saturday night in Orlando, spent the night and then spent the next day at SeaWorld on Sunday.  We watched Lanie as she was a little too young to enjoy this type of entertainment.  I am sure Meghan decided on Medevil Times because when she was quite a bit younger Sherie and I took the family there when we were visiting Disney.  It was a night of ribald entertainment the kids remember vividly because Sherie (mom) came of of her quiet reserved self to cheer on our knight.  I wish that cell phones were as advanced as they are now as I would have great footage.  If you have never been there, this is a dinner theater with live jousting.  The patrons are divided into groups that are associated with a knight and you must cheer for you knight to win.  Suffice to say that the Hampel boys were totally impressed and most of the night were open mouthed in wonder.  Seaworld was also a great adventure.  We had everyone over to our house on Tuesday night to have dinner, presents and cake.  For the Hampel's it was two days of really normal family life in the midst of all the craziness and we are very happy they had the opportunity to seize the moment.

Tuesday was also the breaking ground ceremony for the new Golisano Children's Hospital wing at Health Park hospital.  Evan was one of the dignitary's participating in the ceremony.  At the end of the ceremony he went up on a backhoe with the backhoe operator and Evan was able to take the first "scoop" of dirt to commemorate the beginning of construction.  He was once again a television celebrity for another 15 minutes of fame.

Evan will return on Thursday 05/01/2014 to begin the next leg of this round of Chemo and I am told it is actually scheduled!  I will report any significant happenings.