Day 64 - The eagle has landed

     The whole family is finally back home!  This is the first time we've all been at the house since June 29th and it is a great relief.  Evan's trepidation to take his medicine has reached its pinnacle and I'm optimistic that he'll be more comfortable given some time to get back into a routine at home.  The medical team decided to postpone removing his PICC on Thursday during his other procedures, however they performed this task today prior to our departure.  Evan will get another port implanted in the near future upon eliminating some of the remaining pockets of pus he has internally.

Evan having his PICC line removed.

     I had an opportunity to speak one-on-one with one of the Nurse Practitioners that I admire and respect quite a bit today.  Cristy and I both tried to express our gratitude for helping get our son healed up enough to go home.  There's still a long road ahead in both his cancer treatment and overall health, but it's safe to say he's improved everyday for the last two weeks.  She shared with us how concerned the medical team was for Evan during this most recent stay and that they were collectively thrilled to see him turn the corner and get to the point we're at now.  I want to say thank you again to the entire team for helping bring my son back home where he can continue his journey.

Our home away from home.

     Evan is still a bit ornery and I'm chalking it up to the medications, fear and being too young to know how to verbalize his true feelings.  There's no doubt he's frustrated and wants this ordeal to be over and done.  The onus falls on Cristy and I to help paint a realistic picture for him so he can understand we're going to be heavy on the drugs at least until December.

Leaving the hospital in his new wheel chair.

     Until Evan's ankle is healed and his leg strength is back he'll be bound to his walking boot, wheel chair and walker, depending on the situation.  Cristy and I will be responsible for the PT work for now and although not confirmed my guess is we'll continue with the CHoA team when we go back on Thursday for his clinical work and next spinal tap.  The blood counts that were shared with us today were very encouraging and show that his body is still responding well from a cancer point of view.  In a future blog I'll share his daily drug schedule along with what role the drugs play in his recovery.

We're finally home!

     What does the weekend hold in store for us?  For Nolan and I we'll be heading down to my parent's house tomorrow to help celebrate my niece's birthday!  Happy 3rd birthday Lily!  Cristy will hold down the fort for the morning and afternoon and when I return I'm hoping we can build some momentum on improving Evan's mental state and overall comfort level.  I'd like to see us nurture his appetite to a more acceptable level and continue our physical therapy.  It goes without saying but keeping him healthy is also an utmost priority.  The family and I could use some stress free days so fingers crossed we can get back to some normalcy.

Relaxing after sitting in rush hour on the way home.