JOHNNY UPDATE

This afternoon the HemOnc team gave us the results of Johnny's LP and BMA yesterday.  The good news is there are no blasts in his spinal fluid, the 'bad' news is there are still 10% blasts in his marrow, which technically means he's not responding well to treatment because the blast count should be zero.  I asked the doctor's if the recent infections, meds and GCSF would have any bearing on the bone marrow results and they say no.

When Johnny had his last BMA, the results were 23% blasts, but they couldn't really confirm the cells were true blasts because of his infections and GCSF -- all of the blasts looked immature (potential blasts), but it was hard to tell.  I asked if this was the same scenario, and unfortunately, the cells were true blasts, exact clones of his previous cancer cells -- no questions asked. 

Monday, July 14, will be day 36 of block 1 for Johnny's protocol.  Since he's not in 'remission', the protocol states regardless of what his peripheral blood counts look like, block 2 should be started immediately, no time for count recovery.  The first 5-7 days of block 2 is scheduled hospital time, which means if block 2 starts on Monday, we could be here through next weekend and possibly released sometime the week of  7/21, if things go well.

The protocol states day 36 is another BMA and LP along with three other heavy duty chemo's -- ending block 1 and starting block 2.  Patients with a hypocellular marrow (blasts) on day 36, an ANC less than 750 and/or platelet count less than 75 should have weekly bone marrow aspirate until count recovery or the documentation of refractory disease.  Basically, it says he will get a BMA until things look normal.

Of course this must be talked through with all of the leukemia, trial, and potentially the infectious disease doctors, so his protocol/treatment could change based on all sorts of variables.  You just have to be patient.

I asked about Johnny getting another port again too.  Our doctor's are going to check the surgery schedule to see if they have room either Thursday or Friday and if all of the planets are perfectly aligned, Johnny will get his port placed by the end of the week.  

I know this might not sound like terrific news, but it actually is.  ID wants to keep Johnny on most of his meds until the middle of next week, get another CT and hopefully take him off his 'ID meds' -- which means we would still be here anyway.  If we started the ID meds every 3 days like we talked about before, with the driving back and forth and the time spent at the clinic -- it would be like we never left, but just added the long drive to our day.

With Johnny getting a port as well as the next block of chemo starting soon, this all happens well before the boys ship off to Camp Periwinkle (cancer camp) at the end of the month.  That should give Johnny time to recover from the hard core chemo and with the port in place, he will be able to swim and wake skate his little heart out at camp!

As things change, we will let you know!

hugs to all

jules