I think our respite is ending. Jen had a scan on Monday and we knew when we looked at them it would probably not be good news and that was confirmed today when we met with her oncologist. I don’t have the radiology report yet but the scans will be discussed at tumor board Friday. It seems the original area of tumor continues to look stable and maybe even a little better, but there appears to be an area of new growth definitely crossing the midline now to the right side of her brain. Instead of starting what would have been her seventh round of Temodar® she is on hold until Friday. Two possibilities mentioned were CPT-11 and high dose Tamoxifen®.

This has been a hard day. I have already made some phone calls as I know from our discussion with the doctor he doesn’t think there’s much lag time before she needs to be on something. The last 4 weeks of Procrit® shots have moved her blood count from anemic to normal and she is physically active and still feeling good with the exception of some fatigue. She has been having some slight difficulty with her right hand grasping and holding but I am more concerned with her description of losing awareness of what it does. She’s having more memory problems and the beginning of some incontinence. The 29th of this month will be the end of 12 years she has been dealing with this. Enough! But it doesn’t look like that is meant to be.

Morgan was 4 years old when she relapsed. The tumor was found on a routine scan almost exactly 2 years from the day of first diagnosis. The tumor was again a medulloblastoma and it was small in size, but that didn’t matter; the only thing I could think of was that we did the strongest chemotherapy out there and it didn’t work, now what? Doctors presented us with options, and none seemed all that promising. We talked to the top doctors in the country and many of them told us that Morgan had such a small chance of survival at this point that it might be better to stop treatment all together. Those that did offer treatment told us about traditional photon beam radiation therapy whose long-term side effects could leave Morgan seriously mentally disabled. Our options seemed dismal. Then we heard about a doctor who had just started working with a new kind of radiation (proton). We got on a plane with Morgan’s scans in hand and went to Boston where we were told that the new treatment might not only cure Morgan but possibly also spare her some cognitive late effects. This was the first doctor who had given us hope. Literally the next day, Chris and I packed up our home as well as Morgan and her two younger sisters (aged 2 and 10 months) and drove to Boston. Morgan is now 18 and doing great. [To read the rest of Morgan’s story, see Chapter 25, Looking Forward].