Tournament Time

Since completion of cycle 5 in early August, the Johnson household has been busy!  Despite all of the obstacles placed in front of him, Edward is a growing boy that does not understand what the words 'fear' or 'limits' mean - which leads to several new bumps and bruises every week for him and few more gray hairs for us.  His new favorite activity is watering the plants on the front porch with Katie.  This generally devolves into Edward watering himself and smearing mud across his face.  He (and we) loves it.

Given the significant delay in between cycle 4 and cycle 5 from his low neutrophil count, we had to give him daily subcutaneous injections to stimulate his bone marrow.  Not surprisingly, he does not love these shots as much as he loves watering the plants.  On the bright side, they have certainly kickstarted his bone marrow - we had a record high number of neutrophils last week: 14,000!  That number is much higher than needed and is a little inflated from the shots.  Since holding the medicine, his neutrophils have drifted down to 970 over the past 7 days.  We will keep a close eye on his labs, but are quietly confident we should have plenty for next week for his scheduled chemo.  He has an appointment 1 week from today with Dr. Shields for an eye exam under anesthesia to check on the tumors, followed by chemotherapy next Thursday and Friday at UVA.

In much more exciting news, we are actually spending this whole week in Philadelphia with Katie's family.  In even more exciting news, Edward has been chosen as the guest of honor at a local golf tournament for pediatric cancer.  Junior Golf Clubs Cancer (JGCC) was established in 2004 by some local junior golfers and their families at Whitemarsh Valley Country Club after cancer struck some of their families and friends.  They originally sold donated golf clubs on Ebay to raise money for pediatric cancer, but since 2007, they have held an annual golf tournament to spearhead their fundraising efforts.

We are incredibly fortunate that Edward was selected as the 2012 special honoree for this tournament which is scheduled for tomorrow at Whitemarsh Valley Country Club.  Some of the founding members of JGCC went to the same high school as Katie and her two sisters (Go Mounties!).  We have over 70 golfers signed up for tomorrow and a tons of great prizes available through the silent auction.  We are so grateful for all of the love support from what seems like the whole city of Philadelphia!  My brother, father and brother-in-law are flying in today and much of Katie's extended family and friends will be playing as well.  Even Edward has his own set of plastic golf clubs.  Maybe we can keep secret how terrible at golf I actually am.  Check out the JGCC facebook page and feel free to bid on any of the items!

While practicing his golf swing, Edward got into a box of Pops cereal the other day.  Thank goodness for vacuum cleaners (and dogs)!