It’s been a while.  Time is flying and a lot to catch up on.  I spent the first couple months of 2024 taking some trips.  Following the PET scan, I went to Florida for a couple days with my friend Rachel.  We stayed with my very generous Aunt Lesley and Uncle Joe.  We had a very nice and relaxing time.  In February, Devin, the twins and I, went on a cruise with my sister Paige, my brother-in-law Nick and the girls.  It was beautiful weather and another very relaxing time.  Although cruises can be very hard if you’re on any kind of restrictive diet, I’d say I did well.  

I had another brain MRI on 3/22.  The process generally goes, MRI, labs and then meet with my doctor to review.  At that time, the radiologist has not reviewed the MRI but my doctor gives his opinion on what he sees. 

Going back to my December MRI, the radiologist had noted some spots on my brain that my doctor believed were blood vessels.  On my current MRI those spots are still there, but my doctor thinks they are unchanged.  The report from the radiologist indicates that, in his opinion, they are slightly larger.  My doctor’s thoughts were if they are in fact tumors, they would be much larger with several side effects three months later.  I tend to agree with my doctor.  Knowing how tumors grow, especially the rapid growth of Medulloblastoma, I can’t say I am convinced that they are tumors either, and frankly thinking they are tumors isn’t any good for my mental state. 

I have a follow up MRI scheduled for June 5th, so just a little over 2 months from the prior MRI.  We will see what that shows. 

At my follow up appointment, I did ask about the what ifs.  What if they are tumors?  What are my options?  Doc said there are still some other options—surgery, high dose chemo and potentially radiation but those all come with potentially additional side effects.  I could also do another round of the Temodar, the oral chemotherapy, for potentially another year.  I also remember them talking early on about a stem cell transplant and that would only be if we had to go the high dose chemo route. Just nice to be reminded of the other possible routes.

I continue to take Sonidegib daily, but I know other adults with Medulloblastoma take a drug called Vismodegib.  I asked Doc about that, and he said he’s heard of it and will ask his colleagues if that could be another option to keep in our toolbox.  It’s a very similar drug to Sonidegib.  

I am still bald.  Although, my hair seems to be growing very slowly in small patches.  Other than my head being cold, being bald isn’t all that bad.  It’s the lack of eyebrows and eyelashes that get me.  That’s strange.

That’s probably a wrap for now.  Happy Easter friends.

God, may we feel the warm embrace of your love on this sacred day. May the glory of Jesus's resurrection remind us that with You, nothing is impossible or without hope. We pray in Your name. Amen 

I have cancer, cancer doesn’t have me.

2024AGT

❤️ Darcie