First week of school & re-evaluation

Wow! A first week of school is almost complete!  The kids are doing great!  I think between the two of them - Arielle is having a lot more fun at school than Jonathan.  On the first day - Arielle was all bubbly and smiles, while Jonathan was Mr. Serious - as usual.  I took the video camera with me to record the events of the morning - from waking up from bed to going to class.  I even recorded a little bit of morning assembly.  When we had first arrived at the school, we dropped Jonathan off first - because his classes start at 8 am and then we went over to drop Arielle - her classes start at 8:15 am.  What Jonathan didn't know was that we were sticking around for morning assembly.  It was interesting to see Mr. Serious in the line for morning assembly and then when he looked around and spotted me.  At first there was this look of surprise and then you saw this little crack of a smile.  The Pre-K class doesn't attend morning assembly - it just the kids in Elementary school.

On Tuesday, Jonathan had his CT scan and also got the injection of the isotope for the MIBG scan.  This was the first time Jonathan did not have to drink any oral contrast.  He only got the contrast that they inject into his Hickman during the actual scan.  On Wednesday, Jonathan had his bone biopsy aspirate and MIBG scan done.  This was the first time, in a long time, that he didn't have to go for the re-scan / second scan - which would have taken place today.  What is interesting is that he has been complaining about his back hurting a little bit though - both last night and this morning - but I suspect it's because he is not keeping himself quiet and his being active is aggravating the incisions from the biopsy.

The other interesting thing is that for almost each day we have had to give 'instructions' to Jonathan's Kindergarten teacher.  For example, on Tuesday and Wednesday he couldn't eat any food or drink any liquids because he was going under anesthesia later in the day.  What struck me was that I was wondering whether Jonathan would have gotten the same level of care and concern if he was in a public school.  This helped me realize that there are other advantages to the kids going to a private Catholic school - especially a relatively small one like St Lawrence.  I'm just glad both kids have teachers that care for them and that Jonathan's teacher is able to handle Jonathan's extra special needs as well.

Tomorrow we get ready to go to camp Okizu.  It's a special camp for families with kids with cancer.  I've never been on a camping trip - at least none that I could remember - but I figure if I like this weekend's experience then we could look at making more camping trips next year.  The cool thing is that we don't have to worry about food and there will be lots of people around to lean on for support so it will definitely make our first time experience of camping an easier one.

Fenretinide Study - Cycle #2 almost complete

Today is the last day for Jonathan to receive Fenretinide for cycle #2.  Nothing significant to report - no side effects (that we can see) and Jonathan is 'chugging' along just fine.  You can get more information about the study Jonathan is on by visiting the NANT (New Approaches to Neuroblastoma Therapy) website http://www.nant.org/nant2004-04.shtml

Next week is going to be interesting.  Besides starting school, Jonathan is having a full re-evaluation next week.  He gets the full works - CT scan, bone marrow aspirate and MIBG scan.  A couple of weeks back I was asking the medical team to consider skipping this evaluation - I just didn't want to have Jonathan go through the hassle with the bone marrow aspirate - having to get two needles stuck in his back to withdraw bone marrow.  Unfortunately my 'request' was denied as having the re-evaluation is part of the study / protocol.

I don't expect much changes to occur in the results.  I'm very skeptical that he is free of disease (at this early phase) and I'm a little concern about the fact that they were able to see tumor cells without using the special staining tests.  I guess we'll know more in about two weeks time.

Fenretinide Study - Cycle #1 almost complete

We've started the Fenretinide study.  Actually, we're almost finished the first cycle.  The treatment plan is that Jonathan will receive the drug for one week, then get a rest for two weeks and then repeat the cycle.  He is going to have six cycles in all.  If after the sixth cycle he still has tumor cells but the disease has not gotten worse, then he'll probably repeat this study - provided there were no adverse effects and the study is still open.  The cool thing about this study is that it is - by far - the easiest treatment plan we've had to date.  There are no hospital stays, no worries about his blood counts dropping and no worries about his immune system being affected.  The hardest part is the first and last day while he is receiving the drug because Gabby has to spend the entire day at the clinic for blood draws through-out the day, but I believe this only happens for certain cycles.

The first day that Jonathan received the drug was Thursday July 27th, and we were required to be there at 8 am in the morning.  This was a little tough because Gabby has been feeling more nauseous of late (for those of you that didn't know - we are expecting our third child) and we knew it was going to be a rough day for her.  Since this was an early morning event, it coincided nicely with the time I like to leave for work.  This meant I could have driven everyone up to LPCH so at least Gabby didn't have to deal with the additional stress of concentrating on driving - especially when a nausea episode hits her.  So, I drove to the train station and then Gabby and the kids headed over to LPCH.

For this particular study, the main goal is to test a new delivery mechanism, i.e. the drug is now in a powdered form vs being in a tablet form.  The powder form is mixed with Slim Fast and then the solution is ingested.  The problem is that the powder does not dissolve completely, so there are 'lumps' in the Slim Fast.  Well, Jonathan did not like the lumps and he behaved so badly when he had to take the medicine on the first day.  In order to get him to take it, it had to be forced down.  So, the usual process was adopted, i.e. we had three nurses, plus Gabby, hold him down to try and force feed him.  Of course, during the process, he was spitting it up, and my concern was that he was spitting it up on Gabby.  Although there isn't any clear evidence for Fenretinide, we were treating it just like Accutane (from his previous treatment), i.e. a pregnant person coming into contact with the drug could cause very, very, severe birth defects for unborn children.

After that episode in the morning, Gabby was stressed out.  We spend the day trying to decide whether to put an NG tube in him so we wouldn't have to deal with this struggle.  A huge portion of me was against this idea and I firmly believe that Jonathan is getting to be a big boy and must be allowed to make his own choices.  Thus, if he doesn't listen, then he'll have to accept the consequences.  Since Gabby's nausea was still acting up, and probably got worse because of the episode with Jonathan earlier in the day, the plan was for me to meet them in Palo Alto (after work) and then drive everyone at home.  Then I can give Jonathan his second dose (at home) and verify whether he was going to be a 'nice boy' and take his medicine without much fighting.

The second dose went down much easier than the first, but it involved daddy being more strict with him :) By the next day we had got it down really cool and then by the weekend I figured out that I didn't need to use the syringe to feed him but could spoon it instead.  Now, he has three more doses to go before we finish cycle #1 and it's going really well.  I've come to realize one thing with Jonathan, he is just like his daddy when it comes to trying out new things.  Sometimes, there is this huge mental block and the challenge is getting over the mental block and moving on.