Feb 3: DAY 100 !!!!!!

Incredible, but we have reached Day 100 after Ryan's stem cell transplant!  And it's amazing that there have been no significant set-backs.  His counts are wonderful.  He somehow escaped the nasty viral bronchitis that both Sophia and I had a couple weeks ago.

His IgG (immunoglobulins - proteins circulating in our blood stream that fight infection) are low, so yesterday he got an infusion of IgG to help protect him from infections.  Dr. Cutler said he thinks this is probably the only time he'll need it.  The goal is to enhance his immunity during this season of so many viruses going around.  If needed, he may get another infusion monthly. 

Last week they did nasal washings (sounds like fun, huh?!) - irrigating Ryan's nose and sending the washings to be tested for viruses.  The nasal washings were negative.  I was pretty sure that after Sophia and I had been so sick and coughing so much, it was inevitable that Ryan would get sick.  We used masks & gloves, Sophia slept in a separate room from Ryan, we didn't eat in the same room with him (you have to take your mask off to eat!!), etc.  But with so much coughing I was sure he would get sick, and much sicker than we had been.

The time of highest risk is past.  There is still a small risk of "chronic" graft vs host in the upcoming months, and infection is still a concern, but time is on his side now.  He can eat out now - takeout or eat in during off-hours in the restaurant.  The only exceptions now are deli meats, fresh veggies from restaurants and buffets.   

A friend of Ryan's and a fellow patient he met in Albany Med in May lost his battle with cancer last weekend.  Our hearts ache for him and his family.  He had a long and difficult battle, including chemo, stem cell transplant and cancer recurrences.  Ryan was already struggling emotionally, and Bob's death really hit home.  It brought up the inevitable questions - why Bob?  why not Ryan?  why anybody has to deal with this.  We had plans to get together with Bob and his family for pizza after Ryan reached his 100th day.  Heartbreaking.

Ryan has worked through much of the depression he was experiencing.  Not surprising that cancer patients - and their families - have some kind of PTSD.  What he has experienced not only leaves physical damage from the chemo and radiation, but also leaves a sense of uncertainty and the ever-present cloud of possible cancer recurrence.  Not to mention survivor's guilt.   

Little by little the "old" Ryan is returning: laughing and joking with friends on the phone and while he plays internet games with them, watching multiple episodes of "Lonesome Dove", resuming studying for his on-line classes, etc. 

On the way home from Boston yesterday, Ryan had his first takeout food in 4 months.  Today we had dinner early at Outback, before they got busy with other germy customers.  And this evening a McFlurry.

In two weeks Ryan and Sophia will take a weekend trip to New Hampshire for his 24th birthday.  A real milestone!

How heartening it is to see him making plans and moving forward.  For a while I wondered if the cost of his surviving was never living again.  But he is learning how to live again, finding a new normal.  And I can't wait to see what he does with his life.