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.
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