So... we got the much-awaited results of the chromosomal breakage test in the late morning, and Becca does not have Fanconi's Anemia! A small victory, but a victory nonetheless. She began chemotherapy (Cytarabine) around 6pm, and it will continue for the next four days, twice a day. Idarubicin will be added tomorrow, and will also continue through Sunday morning. Prior to her first dose of chemo, we had to give her steroidal eyedrops to prevent infection, and she needs them every six hours. That doesn't seem like a big deal... only four days of chemo... but check out the syringes in the first dose she is getting today. The chemo that Becca received when she had ALL was nothing compared to this stuff! Then, we just wait for all of the side effects to happen, and her counts to come back up. On the calendar they gave us this morning, the doctors plan on us staying for thirty days, but in reality, if her counts don't come up, we could be here a lot longer.
It (Cytarabine or Ara-C and Idarubicin) is going to be much stronger and harder hitting, and the side effects are really scary. Besides obviously lowering red and white blood cells and platelets in the blood, nausea and vomiting, loss of appetite, and losing her hair, she will also likely develop something called Ara-C syndrome which comes with high fever, aches, pains, chest pain, a nasty rash, and conjunctivitis. Luckily this syndrome will subside when the chemo ends, but she will be receiving it each month for the next few months. They will be watching her potassium and calcium levels closely, as well as her uric acid to avoid kidney damage. She has also had lots of issues with fluid collecting in her lungs since her admission last Tuesday, and the Cytarabine will add to this, making it difficult for her to breathe. I'm not going to mention some of the other "rare but serious" side effects, because honestly, I don't want to think about them right now.
On a positive note, we have had a good day! We have asked that behavioral medicine be called in to assist us. Needing help in telling Becca that she has cancer again, that she is going to lose her hair, that she is going to need to be in the hospital for a long time, and that she is going to feel much worse before she feels better is going to be tough for us, and the fact that Becca has no sense of time, what cells (good or bad) are, etc. makes it even more difficult. Angela (psychologist) came in to do a puzzle with her, and she bonded quickly with her, so that is one step toward her building a relationship with someone here who will not hurt her. We are going to try to develop as many of these as possible through music therapy, OT/PT, speech therapy, the school program, holistic medicine, and any other services that can help (and distract) her.
We also had cuddle time watching Mamma Mia!, and she sang along to all of her favorite songs with smiles. I thoroughly enjoyed it... it was probably the highlight of my stay so far. Some of you remember her lip synching to a couple of these songs when she was three years old and was just getting her hair back after chemo. Here are two of the links if you want to smile:
Two big doses of Ara-C... Becca's first IV chemo for AML
Such pretty claws
Great Nana Russell's cookies...yummm!
Good ol' grilled cheese and fries - the first "real" food I had since being admitted (well, except for the cookie)
I was ready to post this entry for the blog when Becca began exhibiting her first flu-like side effects from the Cytarabine. Man, this is going to be a LONG week!