Ramping up

Becca with her new buddy "Woofy" - thanks to Great Nana's nurses at Mercy Hospital, Mt. Airy! 

So Becca's side effects of the chemo have started to come in pretty strongly, but it seems like she got away with a couple of days symptom-free following her transplant last week.  Most kids start needing a pain pump much before day +4, but Becca just started on it yesterday.  She'll be getting a steady low dose of Fentanyl, and then if she needs more, she can press a button to get an additional bump.

The docs are pretty impressed with how Becca's hanging in there and looking "robust," as they put it.  The mucositis is happening, giving Becca a croup-like cough, sore throat, abdominal pain, and lots of vomiting.  This is due to the cells dying as a reaction to chemo, and the mucosal lining of her mouth is becoming thin and sloughing off, while becoming red and inflamed.  So far she doesn't have mouth sores, which is good, but we were told to expect them.  Most kids stop eating and drinking before transplant, because of the intense pain and vomiting, but Becca just stopped eating on Sunday.  She is vomiting pretty frequently, though, and coughing a lot, but the mucositis is making the vomiting unavoidable... her belly just doesn't like all of the increased mucous, saliva, and blood, and anti-nausea meds cannot help with that.

Becca is still staying up for most of the day, and she's enjoying spending time with the PT, OT, and speech therapist in our room when they are available.  She takes it pretty personally on the weekends when none of these specialists work, though, saying with tears in her eyes, "No one came to ask me to play today."  She's spending time watching lots of movies, playing her Leapster or the Wii, doing arts and crafts, and playing card games such as UNO and war.

Ethan and I have been trying to switch off staying at the hospital this week, as Lily has really missed us (and we've missed her!), and we are attempting to remain sane.  I really enjoyed spending a whole evening and the next morning with her cuddling, watching a movie and eating popcorn, cooking dinner, and polishing her toenails and fingernails.  I know this doesn't seem like a night of "big fun" for most of you, but we are missing the simple things like this.
The most striking difference I noticed in Becca as I returned today (which luckily Ethan warned me about), is that she looks bad and it's difficult to look in her eyes.  Due to all of the coughing and vomiting and her low platelets (they were at only 3 this morning), she has burst blood vessels and capillaries in her eyes.  Thankfully Becca doesn't realize it, but they look like they are filled with blood.  Also, she has some petechiae on her chin and under her eyes for the same reasons.  Hopefully the platelets she got this morning will help with this.

Please, please keep the prayers coming for decreased side effects, Becca's stem cells to engraft properly, and for her counts to start coming in. TK


Renee and Jon said...

Loved seeing Becca and Ethan today and she kicked my tail in Uno and Old Maid! I told her I had to go home and practice for next time! Her spirits were great and I got to be there for rounds. I'm so grateful to have these amazing doctors and Children's in our backyard! I'm glad you are each getting time with Lily and please let us know if she can stay with us anytime soon! Love you all!

HeatherBHA said...

Is there anything she wants that we can get for her? We are going to CA this coming weekend for 2 weeks. If you can think of anything she would want from there - Disneyland, Sea World, Hearst Castle, the redwoods, the beach -- please let us know. I want her to know that people everywhere are pulling for her and know how much she is suffering. You all are so strong - so much stronger than I wish you had to be.

Timmiera said...

So glad that you and Ethan are having "Lily Time" too. You all need to recharge your batteries when you can. I'm sorry for Becca's side effects that are staring at you (literally). She sure is a strong little cookie! Very much like her mom and dad!
As always, I am here if you need me. I am looking forward to seeing you soon. Call if something pops up before then.
Hugs and Kisses!
Love and Light!