Chugging along

Tuesday, March 26, 2013 

Dillon had a followup visit at UNM last Friday.  All of his blood work remains stable and the numbers continue to rise, indicating that his immune system is slowly becoming more functional.  My main concern since leaving Denver continues to be the belly and the weight loss.  Dillon's weight has slowly decreased by about 4 pounds since we left Denver, which is in direct correlation to a decline in appetite and ability to eat a quantity of food.  The docs in Albuquerque were not acutely worried (yet) that it is the GVH returning.  They feel it is more of an adjustment issue both for his body (increased activity levels) and his brain (the brain being the place where the "I'm hungry" chemicals are made) and as he comes off of more meds.  So, this weeks "solution" is to start an appetite stimulant.  He has been on it now for 4 days and it does indeed seem to be helping.  He is a bit more hungry and he is not getting full as fast when he does eat.  Also, the nausea seems to have calmed down a bit the past few days as well.  If things don't improve significantly by the time we return to Denver on April 8, the docs up there will decide if we need to do another scope and biopsy to make sure it is not GVH.  I convinced the docs at UNM that we don't need to come every week for blood work......so we get to skip 2 weeks before we head back up to Denver...a welcome break for my boy (who, by the way, did beautifully on his last needle poke.  With Luca by his side and me helping him with guided imagery about his dream trip to snorkel in the ocean, he did not even get teary eyed and his breathing and anxiety level remained under control).

The ingrown toenail and the cold are slowly resolving without any major issues.

Dillon and I continue our studies of 6th grade math, grammar, writing, reading, and music, all sprinkled with lots of distractions, fun physical activities (today we are going swimming after we pick Luca up from school), and some limited socialization with friends.  Things are so busy for everyone and Dillon is still a bit apprehensive about spending time with friends, so that has not been happening as much as I thought it might at this point.  Big D has been out on the court at our house quite a bit.  He is regaining strength, endurance, and agility.  When I asked him last night if he felt like his body was back yet he laughed and said "NO WAY....but it is much better than it was."  He is looking into the future to trying out for the boys middle school basketball team next year. 

I continue to have ups and downs.  I was reading some support information for caregivers that said a lot of people in my position have symptoms similar to PTSD.....the anxiety, the exhaustion, the worry, the fear, the inability to function at times.  I am slowly recovering with the strong love of my sweet Sean and the boys, as well as my parents ever present love and support.  Friends are coming to my rescue and keeping me occupied with lunches, occasional phone calls, and helping me readjust to being more than a caregiver.  The path I am on is more challenging than I could have ever anticipated.  I am trying to be patient and gentle with myself....not something that I come by naturally.