Unexpected

It is hard to write when there is not good news to share, although I know those are the times everyone is most curious about.  At Anya's EUA last Friday we received some bad news:  her retina is detaching.  Or, at least, that is the doctor's best guess.  You see, there is a lot of fluid in her eye which most likely is coming from a hole in her retina, and that qualifies as retinal detachment.  The other possibility is that the fluid is coming from the tumor itself.  That would present a separate set of problems, but for various reasons the doctor believes it is a hole in the retina despite not being able to actually locate a hole.  What that means is that Anya needs surgery.

We left the hospital Friday not knowing much more than that as the doctor needed to consult with the doctor in Philadelphia and do a bit of figuring out.  It turns out that this problem is not very common and was very surprising to our doctor.  Fortunately, we did receive some good news to go along with the bad.  The good news is that the tumor continues to respond well to the chemo.  As one friend wrote to me, "I hope with all my heart those damn chemicals are doing their job."  Thankfully, they are.  If you have to poison your child's body, at the very least, you want it to work.  The doctor was concerned about seeding, which means the tumor leaves behind little "seeds" that have the potential to become viable.  As of now, the seeding is lessening.  The left eye continues much in the same manner as before:  it isn't responding drastically to the chemo, but no one expects it to.  The scarring from the last laser treatment looks as it should, and there are no new tumors.

Due to the new developments, Anya received no direct treatment in her right eye, and only laser in her left eye, so her recovery went pretty smoothly.  That was a relief to us all as we had some major birthday celebrating to do.

Then it was back to school on Monday, and Anya's 4th birthday on Tuesday found us at the zoo and going out for sushi (another favorite along with pork).  The actions of our days were somewhat normal, but for Will and I there was a constant underlying anxiety about what the coming days and weeks will hold.  Every time my phone rang, I was expecting our doctor, and I was constantly disappointed that it wasn't him calling with more news.

At noon today we headed to the hospital for chemotherapy round number five.  Some welcome to being four years old.  We brought cupcakes and presents for our favorite people there, and Anya received cake and presents.  We went through the ordeal of convincing her to take her two anti-nausea meds.  Then, the doctor finally called.  Just minutes before accessing her port we found out that she will have surgery tomorrow.  Chemotherapy, thankfully, is postponed until she recovers from surgery.  We just got to have a bonus trip to the hospital for a birthday celebration I guess.  Thankfully, we got the news before Anya's port was accessed as that is always a difficult process that comes with a lot of anxiety.

So, surgery tomorrow.  There are still many things that we have questions about, and hope to find out more.  The surgery she is having is likened to having a buckle, or rubber band put around her eye.  Ideally, it will stay there for life, but it is likely that it may need to be snipped in order not to impede growth.  This surgery is extremely uncommon in children, so it is difficult to find out information about what to expect.   After she recovers from the surgery, she should not feel it or see it.  For the short term, we know that she will need to wear an eye patch for a week and will need to have office visits with the doctor weekly for a month.  At her next EUA, the doctor should see her condition improving if it is going to.  For the long term, there are many unknowns.  This most certainly complicates what they can do to treat her retinoblastoma and it greatly increases the chance that she will lose that eye.  For now, we continue to live one day at a time and be thankful for our wonderful four year old daughter and one year old daughter and their beautiful, big, blue eyes.