Change of mind

It's amazing how my mind is so fickle!  Maybe for a good reason - who knows?  When I first received the news that Jonathan still had cancer in his bone marrow - my decision was that most likely we were going to stop active treatment - enjoy the next couple of months - and let Jonathan pass away.  My concerns were that there were no guarantee that his cancer will be cleared and that the next round of treatment - called antibody or immuno-therapy treatment - would be very painful.  I didn't know if I wanted Jonathan to go through immuno-therapy and still have cancer - that would not have made sense.

Last night (Thursday) we had a session with our therapist.  The main goal of the session was to discuss how to articulate to Jonathan that he may have more therapy (in case we decided we still wanted to do the immuno-therapy) and also the possibility of his dying.  During the therapy session I got some brilliant insights.  One such insight was that if we decided not to do any more active therapy - then the next couple of months we will spend with Jonathan would have been our second change to say goodbye to him - as a family.  My reasoning was that in mid-January of 2005 his symptoms came so fast and furious that by the time we knew he had cancer he was already in a very weaken state.  If he had died, we would not have had a good way to tell him goodbye.  I saw the present as an opportunity to spend time with him and to prepare us and allow us to say goodbye while he transitions to his other life.

After we came home - I had another brilliant thought.  Just before we were going to bed - Jonathan's machine for his feeding went off.  We discovered that the tube had actually disconnected from his NG tube so the machine was pumping his pedisure all over the bed instead of it going into his stomach.  I decided to hold Jonathan in my lap (on a chair) while Gabby wiped him off, wiped the bed and changed the sheets.  I didn't have my shirt on - so I was bare-back and Gabby took off his top.  At one point I had Jonathan curled up in my arms with his head resting against my chest and it was his skin touching against my own.  It was such a touching moment especially being able to kiss his head (which has hair incidentally) that I decided there and then that my son is not going to die.  I decided that I was not ready for him to die.  I decided that we have to try one more treatment, that I have to do more research and get more educated because I need to give him a chance to fight this thing.  I want my son to be with me in this life for a little bit longer.

The next day was interesting.  Although I woke up at my usual time to go to work - I decided to take a later train.  By doing this it gave me the opportunity to check my email.  In doing so - I decided to do a quick search on ACOR website to see what information and experiences other parents had to share about the various immuno-therapy options.  Well that lead to me calling a parent out of Texas, who then gave me a number to call a doctor in SLOAN, which lead to calling another parent in Southern California and by the time I was finished I was confident that I wanted Jonathan to do the immuno-therapy.

Jonathan's next therapy is calle ch 14.18 - here is a quick blurb I found on ACOR website given by a parent:

14.18 is a protein found in mice that have developed an immunity to human cancer. It is specifically attracted to the GD2 antigen that sits on the surface of neuroblastoma cells. The antibody 'binds" to the NB cells, and thereafter recruits other elements in the immune system to come and destroy the cancer cells.

Ch14.18 is a human-mouse "chimeric" antibody directed against GD2.  The antibody can be administered alone or paired with other elements like GM-CSF (granulocyte-macrophage colony-stimulating factor, also called sargramostim) or IL2 (interleukin-2)  that enhance their anti-cancer activity.  (GM-CSF stimulates the production of white blood cells and platelet precursor cells.  IL-2 stimulates the growth of certain disease-fighting blood cells in the immune system.)

3F8 is the antibody that MSKCC (Sloan Kettering) is testing in at least one phase II study.  It is only available at MSKCC.  It is derived 100% from mice and, like ch14.18, is directed against GD2.  However, the ch14.18 is a partly human protein (it is approx. 75% human and 25% mouse in composition), and because it has human components, it is less subject to early rejection by the body and therefore stays there longer to carry out its anti-tumor activity. Ch14.18 patients are less likely to generate a neutralizing "human anti-mouse antibody" (HAMA) against the ch14.18 molecule than they might with the 3F8. However, both ch14.18 and 3F8 can lead to an 'anti-id' response, and there is some debate as to whether this anti-id response is helpful or not. (someone else will need to chime in on this aspect)

Presently ch14.18 is only available via the COG-wide phase III study, ANBL0032. To be eligible, patients must have completed COG 3973; OR be in CR (Complete response), VGPR, (very good partial response), or PR (partial response) after treatment "per" the A3973 protocol ("per" means that the child received the chemo regimen of 3973 but wasn't formally entered in the study) or per the POG 9341/9342 protocol or per the ANBL02P1 protocol PRIOR TO a single cycle of high-dose therapy and autologous stem cell transplant. (Please note the eligibility criteria were recently expanded. There are other criteria having to do with time since treatment and evidence of disease, so have your docs consult closely with the investigators if you are interested.)

0032 is also a randomized study, so only half of those entering with will get the ch14.18 antibody. This type of study is the only scientifically valid way that docs can prove whether or not the antibody has any superior effects to standard high-risk treatment.  It may actually prove less effective, so while it is human nature to assume that getting the 'next best thing' is improving our children's chances, we can't know this for sure until this study is completed.  Also remember that antibody therapy is not an easy ride - it can be quite painful and like any therapy, carries risks.