Thursday, December 1, 2011

An Unexpected Field Trip to NYC

I was also thinking of titling this blog post “Did I Jinx It?”.  Yesterday, I posted about how well Isabella has been doing, but today, she woke up vomiting and breathing weirdly.  After about an hour or so, she settled down and was able to get back to sleep and breathed normally, but this little episode got us upset.  Since her tumor is in an area that affects her breathing, we immediately suspected that the tumor had grown to a critical mass that her breathing was being affected.  Isabella was originally planning on going on a field trip with her class today.  Instead, we called our doctor and made plans to go into NYC to have her looked at.

Surprisingly, Isabella started feeling better on the way to NYC and actually felt pretty good when we got to the children's clinic.  She even smiled for the nurses and cooperated with no complaints as they took her vitals.  Since she hasn’t eaten or drank much the last couple of days, they also hydrated her and checked her blood counts.

When we finally met the doctor, she also commented on how good Isabella looked.  She was expecting her to look much worse with how we had described her breathing and vomiting.  She thinks the breathing episode is probably tumor related.  If the existing treatments don’t work at curbing the tumor growth, eventually, Isabella’s brain will tell her to stop breathing and she’ll die.  It won’t be a sudden thing, but maybe something that will deteriorate over the course of several days or weeks.

Was this the start of that?  We won’t know for several days (or maybe even weeks), but we’ll be watching her closely to look for signs.  In the meantime, we’ll continue with the low dose chemo treatments until we’re sure they’re not effective or if they begin causing more harmful side effects.

So right now, Isabella is sitting on my lap and watching Toy Story 3.  These are the moments that I want to enjoy at the time, instead of worrying about the uncertain future.

Tuesday, November 29, 2011

Post-Thanksgiving Update

Isabella has felt better over the last couple of days.  She’s actually been able to walk around the house (with assistance) and has been able to go up stairs (again, with assistance).  Her speaking has also improved somewhat as she tries to speak sentences now, although it is still difficult to understand what she is trying to say.  This usually leads to a lot of crying since she gets frustrated at not being able to communicate, but we’ve gotten better in trying to figure out what she is trying to say.  We’ve thought about using picture boards so she can point to common requests (hungry, thirsty, bathroom, etc.) but just like with muscles, we want to encourage her to speak so that she doesn’t lose the ability completely.

Treatment-wise, Isabella is on a low dose chemo regimen.  With the low dose chemo, we don’t have to spend a week in the hospital and we don’t suffer from some of the more serious side effects, such as neutropenia (low blood counts) and hair loss.  In fact, Isabella’s hair has grown in nicely and is starting to develop their representative curls.  We still have her on a minimal dose of steroids to minimize the effects of swelling in her brain, but we hope to taper her completely off the steroids soon.  Tapering off steroids needs to be done in a slow and controlled manner, otherwise Isabella could have severe reactions.  A couple of times when we dropped the steroid dose, Isabella began to exhibit some neurological symptoms (not being able to walk, talk, etc.) until we raised the dosage.

Over the last couple weeks, we’ve kept busy around the house.  We took advantage of the great Fall weather here in CT and repainted the front porch and railings, which were in bad need of a refresher.  We also got a head start on Christmas and decorated the outside of our house.  I believe this is the earliest we’ve ever had our house decorated.  We’re going to wait until this weekend for the tree since we don’t want it to dry up and die before Christmas.


Speaking of the great weather, we spent one last night roasting marshmallows before we prepped the deck for the winter.  Here’s a picture of us sitting on the deck.


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