Word of the day

The best days are definitely the ones where you struggle to find something to write about. Today is one of those. Nothing much happening at the moment, Bianca seems fine and of course we are now just trying to catch up on doing things around the house.

Bianca is back on oral chemo every night and so far so good. It is around 50% of the full dose. Of course after the time in hospital and with the delay in chemo it feels quite strange trying to get back into our medicine routine. Bianca is still on high dose oral Acyclovir which she has to take 4 times a day and then after that will go on a lower dose, 4 times a day pretty much for the duration of her treatment (so all the way until she is done with treatment). And she will be completely off Dexamethasone (according to Bianca's discharge notes). There were talks that they were going to put her on Prednisone, but I'm not sure as yet. And of course she will get monthly IV Immunoglobulin transfusions.

So here is a new word for you: Panhypogammaglobulinemia (wow, I wonder how many years of study is spent learning the pronunciation of these big fancy medical words).

"Please spell Panhypogammaglobulinemia"
"Can you use it in a sentence?"
"Sure, Bianca was diagnosed with Panhypogammaglobulinemia"

Now that is a spelling bee tongue twister for you... And it is a real word too all you Scrabble fans out there (although you probably won't have enough letters or space on the board to make up this word).

I noticed this word on the most recent copy of Bianca's discharge notes. Basically it means her immunoglobulin levels were low and as a result she got an IVIG transfusion.

One thing we are going to try our hardest to plan is a birthday party for Bianca now sometime in May. Her actual birthday is in June, but we are scared that that is the time when people will start getting sick. We are not saying anything to Bianca as yet because things can change as quick as a flash in this game and it is better to keep it a surprise than to say something and then she gets disappointed if for some reason it can't happen. It will just be a really small party with only a few kids to minimise the risk. But on Friday when we have our appointment at the hospital, I'll be chatting to them to try and understand the likelihood of Bianca becoming neutropenic anytime soon, if they are confident the shingles are finally gone and so on. So it may or may not happen. Either way we will definitely have a family celebration on her actual birthday.

We have a few things happening in the near future, but more on that a little later...


downeyseven said...

I love the humor in the middle of the blog - can you spell.....!! and in a sentence, no less. I am so glad your sense of humor is still alive and I love the pics. As we get ready for spring and summer, I also read with interest the reality that May is the beginning of your cold and flu season. Here's to a healthy month of May.

Clare said...

Lea - I'm sorry to have to write this on the blog, but I've lost your email address and I can't find a link to PM you. I'm getting a bit agitated about the quilt. I can't remember when I sent it (cleared the sent box out - doh!), but surely it is longer than 3 weeks????? J'adore the photo of Bianca on the bouncy castle. Can you tell her those are brilliant colours for a quilt. Someone has given me fabric with hearts and the words "love" on in pink. Wish I had had it when I was doing Bianca's so perhaps I'll just have to do her another one!!!!!!!!!!

Take care of you.