What's The Plan?

On Thursday we got a visit from Dr. Horton, the Dr. in charge of the study Johnny is on, and currently Johnny's primary Oncologist.  She wanted to talk about Johnny's progress through block one of his chemo, and what will happen moving forward.  Last week Johnny had a bone marrow aspiration (BMT) to check for cancer in his bone marrow.  Anything less than 5% means he is in remission, and the doctors were hoping to see 0%.  His BMT showed 10%.  Obviously, block one did not go exactly as planned.  Because of all of the secondary infections it took Johnny two months to get through what should have been a little over four weeks of treatment.  He has also been pumped full of medications that are needed to fight the bacteria and fungal infections, but did nothing to kill the cancer.  The end result is that all of the delays in chemo may have given the cancer a chance to recover, or it's possible that the chemo just didn't work as well as we had hoped.  At this point no one is really sure.  Dr. Horton also noted that there wasn't a lot of cells of any kind (good or cancer) in the fluid from the BMT, and there is a small possibility that the results are inaccurate.  Johnny is already scheduled for a bone marrow biopsy on Monday (that's were they actually take a piece of the marrow test and not just fluid).  The results of that test should be much more accurate, and the plan for block two will be based on what is found.  Block two starts with 5 days in the hospital for daily chemo by IV, then a nice break for the rest of the month to recover.

Plan A:  The biopsy shows less than 5% cancer blasts, and his ANC is already above 750 (very unlikely).  He will start block 2 on Monday and receive all of his chemotherapy next week.  This would be the ideal scenario for his health, and it would allow him to get his hospital stay for chemo out of the way while he is already here for the Anfo since they will not consider changing the dosing of that until the 16th at the earliest.

Plan B:  The biopsy shows less than 5% cancer blasts.  There will be a break before starting block 2 to allow for count recovery.  His ANC should be at least 750, and his platelets at 89 (I think).  Unfortunately he is still on the Anfo, so he won't be able to go home until they pull that back to three days a week.  Once they slow that down hopefully there would be some time at home before coming back for the five days in the hospital to start block 2.

Plan C:  The biopsy shows more than 5% cancer blasts.  Johnny would officially not be in remission.  Block 2 would start on Monday regardless of ANC or platelet counts.  This would be the toughest on Johnny since he would not have time to recover there is a good chance he will drop to 0 again (we've been there before), and we will be on high alert for more infections.

We are hoping for Plan A or Plan B, but are preparing ourselves for Plan C.  We should know on Monday for sure which path we will follow.

A bigger question is what happens after block 2.  Normally the doctors would like patients to finish all three blocks prior to going to transplant.  However, if Johnny is in remission after block 2 there will be some discussion about sending him straight to transplant while the cancer is under control.  Block 3 mainly consists of two heavy chemo drugs, one of which is very similar to the PEG which Johnny apparently can no longer tolerate.  They will run some tests to try to confirm if it was really the drug causing his pancreas problems (he had a lot of bad things going on when he developed that problem), but if so then they may decide to skip block 3 all together.  We will cross that bridge when we get there.

All of Johnny's doctors think he is doing really well right now.  He has a lot more energy, and his spirits are up.  Because of the rotations some of them did not know Johnny when he was really sick, but Dr. Horton is pretty amazed at how Johnny has weathered all of the really bad infections while still battling the cancer.  She was talking to Joey, and said "Your brother reminds me of the Karate guy...Chuck Norris."  Then the two of them started a stream of Chuck Norris jokes inserting Johnny's name.  Dr. Horton:  "When Johnny jumps into a pool he doesn't get wet, the water gets Johnny."  Joey:  "When Johnny was born my parents named him Switchblade Killingsworth, but changed it to Johnny Romano because it sounded tougher."  This went on for quite a while, and we were all cracking up.

On a more sober note, one of the kids who frequents the 9th floor passed away on Thursday night.  We only knew him as "Batman" because of the Batman costume he wore 24/7.  He had been here off and on a few times during our stay, and had seen him at the clinic a few times.   We will definitely miss him running the halls and  keeping us safe from villains.