Tuesday, October 10, 2006

Treatment not as soon as we had hoped

Dylan was scheduled for a work up (scans etc) last Thursday and Friday. We went into clinic on Thursday and discovered after having his blood tests that he needed a platelet transfusion. His nurse was preparing for the platelets to be giving during his bone marrow aspirations but Dr Modak came in and we talked about the “hot 3F8”. He explained that they are only able to have 2 patients on the “hot 3F8” at a time and that they would not be able to put Dylan on the study until around the 9th November. Of course my heart sank. At first I felt angry that we had waited so long and that other children were ahead of Dylan for the treatment, but then I realized that the other children were likely prioritized as maybe their condition was progressing and since Dylan is currently stable, he got pushed back. I know that they didn't make the decision lightly. I am however very nervous about the fact that it has already been a month since Dylan’s last therapy (chemo) and now he has to wait another month with no therapy. We discussed oral chemo but he would only get a week in and would have to stop in preparation for the “hot 3F8” anyway, then we discussed Accutane, but research shows it really doesn’t do anything until you are NED (no evidence of disease). Anyway, Dr Modak canceled Dylan’s work up, because it would not fall in time with the new study and he would have to go through it all again just before he started the “hot 3F8” so in that case, he will now have his scans on the 17th and 18th October instead. On Friday Dylan had a blood transfusion and started on GCSF injections again as his counts were borderline. He also had a hearing test, which showed little change since the last test in April. We spent the weekend at Long Island, didn’t really do much but Dylan loves it there and loves playing with Thomas. I of course love spending time with Lynn and Greg who are a real pillar of strength to me. Today at clinic Dylan’s counts were great, no more GCSF needed and no transfusions. This week Dylan will see his teachers daily and visit clinic again on Friday, no plans at this stage for the weekend.