Way Too Long (Day +62)

I have to say up front. I am sorry for the delay in updating the blog. It took me a while to figure out why I was blocked. Every time I sat down to write, I ended up on Facebook, or organizing old emails, or randomly surfing the internet.

Today is day +62 since transplant. How amazing to think we are now more than half-way to the 100 day milestone!

Since I wrote last, we have had our regular clinic appointments at least twice a week, and some changes in medication.

Alex has not needed any transfusions since we left the hospital (whew), although we continue to struggle with getting him to drink enough everyday. Last week, I actually asked for an infusion of saline, to increase his hydration. He is on a lot of medications, and without proper hydration, they don't flush out of his system properly, which can lead to complications (which we have so far avoided).

Our clinic appointments usually involve drawing blood, and getting a "once over" by the doctors. We have been successful in tapering Alex off of his steroids (whew). The doctors have added a couple of medicines in response to some of Alex's blood tests.

The Cyclophosphomide that Alex took as part of his "conditioning" prior to transplant, can affect magnesium levels for quite a while after the doses are administered. About 3 weeks ago, Alex started taking 4 huge magnesium pills twice a day to counteract that effect. Thus allowing his body to recover, and start absorbing magnesium on it's own. We were told to have Alex take the magnesium for 30 days. I am not sure if we will continue, or if we will be able to cut 8 pills from his daily medicine doses soon.

The Tacrolimus medication that Alex takes to suppress his immune system can cause high blood pressure. Alex is now on two additional pills called Amlodipine per day to help bring his blood pressure back into the normal zone.

Other than that, we give Alex his medications, we flush his Hickman line every night, and we go to clinic appointments, where they test his blood so that they can adjust medications as needed.

Alex's teacher from last year, has become his school tutor, which is just awesome! They already have a great relationship, and I am proud to say that Alex is doing very well with his school work!

Now that we are past day 60, Alex can eat food from a restaurant - but only take out - no eating inside one yet. Once he is tapered off the Tacrolimus, we can start to investigate returning to school, and going into stores and restaurants. Unfortunately, we don't know yet when they will be able to start the taper. All we are doing now is just waiting for Alex's body to adjust to his new marrow, and there is no real timetable for that. We just have to be patient.