brianutter.net

Guess who? Transformer and Tinkerbell ready for Halloween.

Well, we’re now officially into phase IV, Delayed Intensification, and so far so good.  AJ started a new drug called doxorubicin.  This is a potent reddish-colored anthracycline that apparently can damage your heart in high doses.  However, the dose that AJ is getting is fairly low and he only gets it 3 times, so we’ve been told not to be too concerned.  They will monitor his heart for any changes.  AJ also re-started the steroid, dexamethasone.  You may recall from phase I that this is really the only drug that has given AJ a lot of side effects – so we are expecting moodiness, muscle pain, food obsession, swelling and weight gain.  At first we were glad to see that he will only take the steroid for 7 days on, then have a 1 week break, then take it for another 7 days (as opposed to the 40 day run he had earlier in the summer).  However, at our last appointment we realized that the dose he is getting in this phase is almost double what he had before, so it will be interesting to see how it goes with a shorter duration but much higher dose.

On Thursday AJ went in for yet another spinal tap (he will get 30-40 spinal taps over the 3 years of treatment – he’s probably already had around 15).  This requires general anesthesia.  While he was under, he was also given 2 intramuscular shots of PEG-asparaginase.  He seemed pretty run-down after, but said he didn’t feel bad.

Delayed Intensification is often the most difficult phase for ALL patients.  It’s the last series of hard-core drugs that is meant to wipe out any remaining trace of leukemia that may be hiding in the body.  We’ve been told to expect that the next 8 weeks will be hard on AJ.  This phase often requires hospitalization.  We of course are hoping he will tolerate everything well and will not have any bumps in the road; however, it was good to have our expectations set so that we know what is “normal” in this phase.  After seeing the treatment calendar, we can see why it’s so hard.  There will be a couple weeks where he will be at Children’s for some sort of chemo every day, including Thanksgiving day.   Needless to say, we’ll be staying at home for the holidays this year!

We’ve been able to prevent AJ from catching anything, including the flu, even though both Camille and Sarah have had it.  Camille came down with it a couple weeks ago and Sarah had it this past weekend.  Both cases were relatively mild with fever, body aches and a cough.   Just as Camille was recovering, AJ came down with a fever.  Although the fever was low-grade, we took him to Children’s to get checked out in case it was the flu.  While he was at the hospital, his fever ended up going away.  But just to be safe he was tested for H1N1 which came back negative the next day.  We were given some Tamiflu in the meantime while waiting for the results, which we ended up not needing (though we are saving it just in case).

Although he was able to get the seasonal flu shot a couple of weeks ago, the H1N1 vaccine is still in very short supply so AJ has not gotten one yet.  At this point we will likely have to wait another 3-4 weeks when he is off steroids.  As a result, we will probably have a low-key Halloween weekend.

We’ll keep everyone posted as we go through the next few weeks.  Please keep AJ in your thoughts and prayers and let’s hope for a smooth ride.