Ever been rear-ended while watching it happen in your rearview mirror? If so, you understand the feeling of pure helplessness... knowing that the impact is really going to hurt, yet being paralyzed as you watch, cringing, unable to do anything about it. That's how I have felt for the past few days. I have been dreading this weekend, knowing that Becca is going to be "flattened" by the chemo, miserable with mucositis, and perhaps experiencing flu-like symptoms. She has been feeling great all week, yet literally bored to tears. Friday night she broke down at bedtime, saying, "What are we going to do tomorrow, Mommy?" I replied that we would probably do some arts and crafts, puzzles, and play some games, and she countered with, "Are we going to be here FOREVER?! It's boring here!" with crocodile tears in her eyes.
We had a tough discussion about why she cannot leave the room. She explained that she's not sick (which is true... no fever and a good ANC), so I told her that we don't want other kids to get her sick before her bone marrow transplant. We then talked about why she's getting a bone marrow transplant. Her body's blood-making factory is not working, so some nice man is giving her some of his factory so that it can help her body to make healthy blood. Becca wanted to know how they will take his factory and put it in her body. I explained that for her it will not be a big deal at all... it will just go in through her tubey (central line) with no ouchies, and it will just look like a bag of blood hanging on her IV pole. I then told her that for the nice man, he would get a pokey in his back, like she has had in the past, and they will take out some of his factory. She processed that for a little while then asked who got her factory when they took some of her bone marrow out the last time she got a pokey in her back. Oh, this is so hard to explain to a six year old!
So the rear-ending happened this afternoon. Following Lily's visit this morning when Becca was feeling great, full of energy, and really enjoying playing with Lily, Becca started complaining of her tooth really hurting, actually screaming in pain (and this child has a very high tolerance for pain, mind you). It will be the first tooth she has lost, so the feeling of a dangling tooth is new to her. We thought that maybe the chemo could be exacerbating her nerve endings, so it could be making her more sensitive. I asked the nurse if she had any Orajel or something similar they could give her, and we discussed if we should just pull the tooth to give her some relief. The doctors wanted to avoid giving Becca an open wound in her mouth intentionally (which I totally get), so we decided on some Atavan to take away the pain a bit. About fifteen minutes after taking one of her oral medications and getting the Atavan (also used to combat nausea), she began vomiting. When she complained of severe stomach pains and kept vomiting, they ordered some Ben-Phen (Benadryl/Phenergan), and she fell asleep in the fetal position clutching her belly before 6pm, telling me, "I don't want to be me, Mommy."
Oh how I wish I could take on this pain for her! It sucks. I know it's "to be expected," but that doesn't make it any easier for Becca (or us) to endure. Our daytime nurse today was working all day to get Becca some type of pain medication that could be used PRN, just so that when she needs it, she won't have to wait forever for the doctor's orders, etc. Needless to say, it's now 10pm, and she still has no pain medication available. I'll be bringing that up on rounds tomorrow.
At least we have a wonderful night nurse who is going to get Becca's anti-nausea meds double-covered over night, staggering them so that she's getting something every two hours or so. The good thing is that she will probably sleep a lot, but the bad thing is that they need her to have urine output every two hours to make sure her kidneys are happy. I woke her up around 7pm to go, and she vomited again upon standing. Around 9:30, when I was debating trying to wake her up, she sat straight up in bed and vomited, so there was my opportunity to get her on the toilet without having to wake her up. It's not easy to wake a drugged child up to go to the bathroom, by the way. Wish me luck the rest of the night! I can tell I'm going to be at the top of my game for rounds tomorrow...
It's time for my request to you:
Please, please keep up the prayers and positive thoughts for Becca and the rest of our family! They have worked wonders so far, and they will be critical this week as we struggle through what we anticipate to be the trenches. In the midst of the trenches, though, is "infusion day" on Thursday of this week. This is the day when Becca will receive the bone marrow given by a 21-year-old male that could save her life. We are so grateful to this young man, and though we cannot thank him in person yet, we look forward to someday expressing our gratitude for saving our baby. We also ask that you pray for the donor's bone marrow to engraft well and for it to adapt to its new "home" without attacking the host (Becca). Maybe some of you will wear your Becca's Believers shirts this week to remind you to think and pray for her often. I'm wearing mine right now as I type...