Friday, April 1, 2011

In Limbo

Well Dylan is feeling ok, he had a cold amongst all the testing which made him feel miserable, but he appears on the mend now. He had a CT scan of his chest, hips and pelvis which came back as stable. He attempted the head MRI but was unable to handle it, so another was scheduled with an anesthesia, that came back as no brain involvement and the skull did not correlate with the MIBG spot seen. He also had Bone marrow aspirations, but the results are not back yet. We attempted a Stem Cell rescue with 5 days of high dose GCSF but the CD34 test came back showing no stem cells. That evening at 9pm we went to urgent care for an injection of a drug called Plertxafor which is also a stem cell stimulating drug. The nurse told us the injection cost $8,! The next morning after another GCSF injection we went to hospital for another CD34 test, and waited for the results. Dylan was scheduled to have a central temporary line placed then down to the donor room for harvesting. We sat in clinic at after 4 hours the results came back as 0.00 so Dr Modak came to us with a sad look in his face and told us that there are no stem cells to harvest and he will discuss Dylan in the NB team meeting and get back to me with a plan. He said that he is not in panic mode yet and that he does not feel that there will be rapid progression. I got the impression that he really didn't know and that none of us will know until his next scan schedule in 4-6 weeks. I think the thing that confuses him is that Dylan's urine markers are in almost normal range VMA 8 HVA 10, this usually means that things are stable because the hormone found in the urine is produced by the cancer cell growth. MIBG scans are very accurate for Neuroblastoma, more than other scans because the MIBG isotope piggy back the Neuroblastoma cells, hence lighting them up. I do know of MIBG scans not showing disease in some children, if anything an MIBG scan underestimates skeletal disease burden, according to this article. I have never heard of them showing disease that's not really there and failed to find any articles revealing that. I'm relieved, anxious, scared and confused all at the same time. I guess time will tell. I believe that Dr modak has Perifosine in mind for the time being, but as Dylan has already been on this study in the past, it will involve more paperwork and possible compassionate grounds for him to get the drug again. I am waiting to hear from Dr Modak on what the plan is after the meeting. Dylan had mixed feeling, he was sad that the stem cells could not be harvested as he knows how important this safety net is for on-going treatment, but he was happy that he did not need to have a central line placed. For now we will continue to take each day as it comes, make the most of each one and not dwell on the maybe's until we know where this road is about to take us.