Home Sweet Home - Our New Normal

Since our last post, Cole celebrated his sixth birthday as well as his six month post transplant landmark.  He has been living at home in his own section of the house while we remain diligent about keeping him healthy.  We continue to clean everything with bleach, wash hands constantly, prepare his food carefully, run air purifiers non-stop and keep him away from groups of people.  He wears a mask when out of the house and continues to take his medicine three times daily.  He's even begun home schooling.  We live in constant  fear that he'll get a viral, bacterial or fungal infection, but at least we're all in the same location and have some normality to life again.

Two weeks ago, we drove back to Cincinnati for a check up and got the green light not to return for 4 months.  It's a blessing and a curse to be out of the hospital.  A blessing that we're not confined to the physical location of the hospital, but a curse that we don't have the security of the doctors and medicine there.  If something goes wrong, we're a 12 hour drive to comfort.   

Cole's levels continue to swing and settle out - we hope.  His engraftment has been hovering in the mid 60's which would mean that he doesn't have to go through another transplant.  His thyroid, ANC and other blood counts fluctuate, but seem to be trending in  a positive direction. 

Being home has been a great mental boost for Cole.  He's  seen close friends from a distance and spends some time with his older brother and sister.  After his chest wounds from his port healed, he was even able to go in the swimming pool for the first time in over a year.  It occurred to me how many things he's missed in the past year.  His sense of humor and perspective is very advanced since he's spent so much time with adults.  I'm hopeful that he'll adjust quickly socially when he's able to be around his friends.

Physically, the effects of the steroids and chemo are starting to wear off. He's beginning to grow his blonde hair back, his weight is dropping off and his body hair is disappearing.  He's less self conscious and becoming more physically active daily.  I remain concerned about the long term effects of the medicines he's taken, but we'll enjoy each day.  

I clearly underestimated how long this process would take and how taxing it would be on everyone.  Physically, mentally, socially.  The anticipation, logistics and fear of the unknown take their toll.

The power outage from Hurricane Sandy created additional stress, but we continue to count our blessings.  We continue to learn of other families who lost their children and recognize how fortunate we have been so far.  

Also a shout out to my parents, especially my dad, for helping out over the past few months.  After Janet's mother so selflessly spent several months with the kids while we were in the hospital, my father has been helping make the logistics easier at home now that Cole is there.  We couldn't have done this without the support of family and friends along the way.  Thanks to you all.  Count on a big thank you bash to all in the Spring...