After much deliberation about the best options for Alexander and our whole family, we have decided to have Alexander’s chemotherapy done at Lurie Children’s Hospital in Chicago.  St. Jude has been very good to us, and we would have a choice of two treatments (one published, one unpublished) if we were to return there.  Lurie Children’s only offers us the published treatment option.  We want to choose the best treatment for Alexander, but there is unfortunately no principled way to compare the two chemotherapy protocols to determine which is the better one for Alexander.

In the end, we chose to go with the published treatment protocol–which is the same protocol under which Alexander was being treated at St. Jude for radiation.  This protocol showed a benefit to children with Alexander’s aggressive tumor subtype in treating them with carboplatin concurrently with radiation.  The chemotherapy portion of that study is aggressive, but we feel it needs to be aggressive to give Alexander the best chance.  Time may show that the as-yet-unpublished St. Jude study protocol yields even better results, but we don’t have time.  We have to choose now.

Because there is no principled medical basis for choosing one protocol over the other, we had to consider other factors in making our decision.  The benefits of being at home, in a familiar and comfortable place, surrounding Alexander with family, friends, and wonderful neighbors, won out in the end.  Alexander will get to be close to Charlotte, and we will all be here to support Charlotte during this important school year.  Our mental and emotional health would be strained by splitting our family between Hinsdale and Memphis, and while life will not be easy, we feel sure we’ll all cope better here.

But again, life will not be easy here.  Alexander will spend 3-4 days in the hospital each month for inpatient chemotherapy and 7-10 days each month with practically no immune system.  Especially during those times, we will not be free to come and go as we please; we will have to take every precaution to avoid infection, because any exposure to a common pathogen could turn into a life-threatening situation.  We know there will be unexpected trips to the hospital to get care, and we have a plan in the works for that.  There is a hospital much nearer to us than Lurie Children’s; we’ll go to the closer one first and then get transferred to Lurie if necessary.

It was not an easy decision not to return to St. Jude.  We feel very comfortable there, and we know beyond any doubt that the care we received there is second to none.  Furthermore, St. Jude makes its patients feel like they are part of a larger mission, and we certainly felt that when we were there.  Returning there would be simple and comfortable from a care standpoint.  We do feel, though, that the care here in Chicago will be equally excellent, and, as I said above, the benefits of being at home outweigh the benefits of being at St. Jude.

Let me stress this: we are in no way giving up on St. Jude or any less sold on its mission.  St. Jude is a world leader in pediatric cancer cures.  We will recommend Dr. Gajjar and his team to anyone we meet faced with the horrible situation we faced.  We encourage everyone who is so inclined to donate to St. Jude.  Children from all over the US and the world get care at St. Jude that they could not get anywhere else.  We are St. Jude fans for life.

Whew.  This decision was not as fraught as the decision to do high-dose radiation, but it was a tough decision.  We’re glad it’s made, and we can now move forward in life back home.