There have been a couple of changes to Jack’s situation recently. 

First, we went to the hospital last week on Thursday for Jackson’s radio-isotope blood test (the six-hour one).  Once we were checked in and everything was ready, we had to quit because blood was not drawing out of his broviac tubes.  Thinking there might be a blood clot, they sent us across the street to the pediatric oncology clinic to have the nurses there administer TPA (tissue plasminogen activator).  TPA is a genetically engineered blood clot-buster.  We were finally able to coax Jackson out of the radiology unit of the hospital (much harder than you might think) and across the street to the clinic.  Once there, they decided to give his tubes another try before administering the TPA.  Of course, it worked just fine and blood came right out.  The only problem was that by then it was already early afternoon and far too late to go back across the street to start the blood test.  So we went back again Friday morning for the blood test. 

Friday morning everything started out just fine.  His first couple of blood draws went fine, and they injected the isotope.  Then, when it was time to draw blood again, his tubes quit working again.  After exhausting all of my tricks, and those of the blood-draw guy, we again had to abort the test.  The inconvenience of two failed tests is one thing, but Friday’s was much worse because that time Jack was left with an unnecessary radioisotope coursing through his veins.  So we went back across the street and got our TPA, which appears to have worked.  We’ll be trying again Monday morning.

Second, and more importantly, it appears we likely will not be starting the final round of high-dose chemotherapy/stem-cell rescue (HDC/SCR) that he was scheduled to begin on Halloween.  At this point, that round of chemotherapy has been canceled due to potential drug allergies.  As you may know, following the previous round of HDC/SCR, Jackson got a fever and an “impressive rash” which took quite some time to heal (he’s actually still itching).  None of the virus cultures were positive—so it does not appear to have been viral.  Also, it did not appear to the doctors to be an extremely rare reaction to the stem-cell transplant called “autologous graft vs. host disease” either.  It appeared by all opinions to be a drug allergy; however, it has not been determined which of the many drugs Jackson takes is the culprit, and perhaps it never will be.

The doctors informed us that they are of the opinion that it is possible that the allergic reaction was to one of the HDC drugs, and decided that at this point, at least, the risks may outweigh the benefits of going forward with the final round of HDC/SCR because the allergic reaction may be worse next time.  They have scheduled another MRI for next Thursday to assist their decision.  It is possible, but probably not likely, they may change their minds after Thursday’s MRI and revert back to the HDC round.

We are not normally in the habit of discussing treatment decisions on the website before they are made.  However, we realize that canceling the last round of chemotherapy treatment begs the question.   Just know that the doctors at UCSF have already met and decided upon their next proposed course of treatment (assuming they don’t revert back to the HDC) and meanwhile, we continue, as always, to consult outside doctors to render assistance and alternate proposals in such a manner as to not delay any treatments.

   
The photo above is of Jackson in the Halloween costume he was going to wear to the hospital for his since-cancelled Halloween admission date.  Instead, he wore it at our SF home.  We chose the outfit because (1) we needed a costume that had a button-up shirt to provide easy access his tubes at the hospital; and (2) I am trying to indoctrinate him into becoming a Red Sox fan before my brothers can try to stick him with their sorry teams.