Round 4 of Immunotherapy Treatment

Round 4 started last week Tuesday with Jonathan getting infused with a low dose of IL-2.  Since he did relatively well with IL-2 during round 2 - we were allowed to have the infusion take place at home.  Jonathan's infusion was for four days - so from Tuesday morning until Saturday he was hooked up to his machine that gave him 1 ml per hour of IL-2.  We weren't taking any chances with his nausea this time around - so at nights we gave him a dose of his anti-nausea (Zofran) medicines - especially since he is still on the machine that feeds him during the night.  His feed is five cans of Pedisure which is delivered over 10 hours.  The good thing is that his weight is keeping constant - about 48 pounds - although he can do with a bit more weight.

Jonathan is going to get admitted tonight to start four days of high dose IL-2 and ch14.18.  This time we'll have him on round the clock anti-nausea medicines including: Zofran, Adivan, and Benedryl (or another drug in the same family).  I don't expect any surprised this time around - especially since we learnt so much during round 2.  We're also coming up to another re-evaluation of his tumor - and both Gabby and I are not really looking forward to it.  Let's just say I wouldn't be surprise if his tests still come back positive - but we'll see what happens.

Prior to starting round four - we spent the weekend (President's Day weekend) at Disneyland (in southern California).  We left San Jose around 3:30 pm - when we really wanted to leave at 2 pm - and arrived in Anehiem around 10 pm.  I don't know how people could live in southern California - but the traffic there is really bad - and if I can say that as a Bay Area person - then you know it's really bad!  On the way back to San Jose - it took as two hours just to drive 30 miles!

The trip to Disneyland was nice.  We felt we needed to do it - to give the kids something fun to do.  I think Jonathan feels his Make A Wish trip isn't going to happen because we keep pushing it out.  So this quick get-away was to give them a little taste and lift their spirits.  We went with my cousins from San Francisco - so the kids had their cousins to hang out with as well.

On the personal side - I think both Gabby and I are reaching our limits with pushing on.  Everything is robotic for me now - just get through the day at work - do whatever we have to do with Jonathan's treatment and rest whenever I can.  I'm toying with the idea of taking some leave (unpaid) but we'll see.

Putting Jonathan's remaining cancer into perspective

Jonathan continues to do very, very well during this third round of receiving ch14.18.  He's been active, hardly feeling any pain, and has been able to eat.  Today is the last day in the hospital, and hopefully all goes well tonight so that he can be release tomorrow morning, so that by tomorrow afternoon we'll be on our way to Yosemite.

We also had our consult with our primary oncologist this morning - to help put into perspective what Jonathan's remaining amount of tumor cells actually means.  As with all things in life - there is some good news and there is some bad news.  To sum it all up, the good news is that we can say with some certainty that Jonathan's life has been extended.  When Jonathan was finally diagnosed with Neuroblastoma a year ago - it was almost the end for him.  We have (now) reached the stage where most of the tumor cells have been eradicated; he has no solid tumors; the amount of tumor cells in his bone marrow is small; and he is recovering - physically, mentally and emotionally.

The bad news is that he still has cancer cells - so he is definitely NOT cured.  There is also no guarantee that he will be cured because one of the characteristics of Neuroblastoma is that even with just a little bit of tumor cells - it can become aggressive and 'explode'.  I've (personally) read too many stories of Neuroblastoma coming back with such a vengeance that it's frightening.

What does this all mean?  It means we have a reprieve.  It means we (finally) have hope.  It means a little more sanity in our lives - but for how long - we don't know.