Great break, but right back into chemo. . .

We had a wonderful break from chemo and took a much needed trip to Florida to rest and recoup.  Rob's parents live out there and had us come out for about five days.  We took the kids to the beach, looked for sea shells, and mainly relaxed.  It was pretty wonderful and was our first real break since Stella was diagnosed and our lives became the whirlwind it is today. 

Stella jumped right back into chemo as soon as we returned and is now in the "maintenance" phase, which is 8 cycles of 4 weeks on/2 weeks off.  Yesterday we finished her second week of her first cycle.  She did great.  Her oncologist is very happy with her ANC count and says she is right where they want her to be. 

Things are settling into a fairly normal routine and we are all feeling good, but there are still moments that take my breathe away and make me realize how truly scary and insane this whole thing is.   As you all know, Stella's left side of her face and her left eye are partially paralyzed due to the pressure the tumor is putting on her 6th and 7th cranial nerves.  Since we have entered into this cancer world I feel like I see and am aware of so many other children dealing with this, and different types of cancers.  The scariest of all is a type of brain tumor called a diffused intrinsic pons glioma, which is a type of brainstem glioma.  The mortality rate with that type of tumor is almost 100% and children are usually given a 9-12 month life expectancy upon diagnosis.  Stella has a brainstem glioma, but thankfully it is a pilocytic astrocytoma.  I was speaking with our oncologist about how I've seen photos of several children with DIPG's who have the same facial symptoms (palsy on the left side of face and same eye problems) and I was wondering why Stella's symptoms are so consistent with theirs.  She told me that when they first saw Stella's scans in July (when we were first admitted) they were not sure if it was a DIPG or something else, but that Dr. Sun was pretty sure the tumor origin was not in the pons, but just growing into that area, which made all the difference.  That just blew me away.  I am so, so, so thankful that we are not dealing a DIPG and my heart just breaks for all of the families out there that are.  As awful as all this has been, and as sucky as it is that Stella has to go through awful chemo treatments, I know that it could be SO MUCH worse for our family and we are just thankful that Stella's oncologist fully expects her to survive this. 

I feel so compelled to do what I can to help raise awareness about this awful disease and raise funds for research, assistance for families, etc.  It is just so, so hard to do when we are simply trying to get through each day, go to treatments, schedule and be there for all of Stella's PT, OT appointments, eye appointments, take care of our other kiddos, and work full time.  I am thinking though of trying to do something like organize a race (maybe a 5 and 10K) and concert to raise funds for a few organizations that are near to and dear to me - the Northern Nevada Children's Cancer Foundation, PLGA (which raises money to research cures for pilocytic astrocytomas), and the Smashing Walnuts Foundation, which is the foundation created by the family of Gabriella Miller, who recently died as a result of her DPIG and whose tumor put pressure on her 6th and 7th cranial nerves causing a facial palsy that looked almost identical to Stella's.  The Smashing Walnuts Foundation is doing some great work right now trying to get additional federal funding directed to pediatric cancers.  I am thinking that a fundraising run/concert would be great next year in September or October, when we have completed Stella's chemo and have nice weather. I'd love to hear your ideas about this. . . . :-) 

As always, thank you for the love and support.  I will try to post some pictures from our vacation soon.