I'm sitting here wanting to update but I just don't know where to start. The past two days have been hard but at the same time, I'm surrounded by people having a harder time. I told a woman today that in my "real life" people would be feeling sorry for me but around here it's just Tuesday. She has a three-month old waiting for a liver transplant so yeah, get in line with the sympathy.
I was really hopeful, and a bit in denial I'm sure, that interferon would be no big deal and she would sail through it. Yesterday they hooked her up about 5:30 PM and she got her first infusion and she was feeling fine so I'm thinking, "Woo hoo! Home free!" Oh sweet naivety.
As soon as we walked out of the clinic she started complaining of a headache. Within ten minutes she was outright crying from the pain of it and I started to get worried. What do I do? Is this normal? They can give a person a huge list of side affects and one can shake her head and say, "Yes, yes, I understand," but until it's your kid who is freaking out with throbbing head pain it doesn't really sink in that the side affects train is headed your way and you can't stop it. So, I took her back up to the pediatric floor but they were closed down. I ran into a nice oncologist who said, "Interferon? Yeah, that's normal." So, with the hopes that he was right and my child wasn't going to have a sudden brain aneurysm I took her "home".
Last night was not fun. The headache was followed by stomach pain and that was followed by copious amounts of puke. I've cleaned up puke before but this was the absolutely most foul smelling vomit I could have imagined. I'm trying to get it all cleaned up and doing my best to not add to it and Rachael, noticing me dry heaving says, "What are you doing? Are you going to throw up too?" I'm all, "I'm trying not to!" and she laughed! Head pain, stomach aches, puking and she still has it in her to laugh at her mom about to lose her cookies.
After she threw up she got cold. Really, really cold and three blankets did nothing to help. She was just shivering and crying. And the shivering made her puke some more. So, we finally drifted off a little bit and suddenly she goes, "I feel heavy!" Heavy? I didn't read that on the side affects list. What does that mean? She, in typical Rachael fashion, gets irritated with me that I didn't know exactly what she meant. "You know mommy. Heavy!" Then she throws the blankets off her and begs me to turn the fan on her. The room was cool but she was so hot and thirsty and please, please throw me in a bath of ice cubes I'm dying of the heat.
She was so hot to the touch. So unbelievably hot. It was at this point that I realize I don't have enough tylenol to last us through the night and - can I be more stupid - I didn't bring a thermometer from home. And it's 1 AM. I say to her, "Rachael, I am going to need to get a thermometer and some more medicine. Do you think I can leave you for a little bit?" She said okay and with furious prayers that she doesn't have a seizure I go out in search of a 24-hour CVS. I get back within 20 minutes and thank you Jesus she was okay. Her temp was 103.1 and this was 30 minutes after I gave her a dose of tylenol. So I give her motrin and within 20 minutes it started to go down. About an hour later it was normal and she felt fine. And we slept.
This morning we get up to do it all again. Today the symptoms were longer lasting but not as severe. No puking (yet) but she had a nasty headache all day long and her stomach hurt. Plus her body hurts and she's cold. And tomorrow guess what? We get to do it again!
It dawned on her today that we're going back and what they are giving her and that the two are connected. This was not met well and at one point she even said that she doesn't want Daddy and Marc to come visit us because she will be sick. How sad is that? I assured her she'll feel better on the weekend because she won't have to get the medicine on those days but right now, three days seems like an eternity.
She did get to participate in the Children's Art Project today (it's every Tuesday morning) and this evening she was talking about it as, "Remember what we did yesterday?" So, the days are long right now. And it's hard without support. It's hard to get to the grocery store and do laundry and shower when I have a child who is hurting. And it's hard emotionally because she is mad and guess who gets the brunt of that? She told me earlier that she is sick of me being her mommy. And Tom is discovering it's hard running a household and taking care of a child who has homework and getting everything done when one works full-time. This would be easier to handle at home but I do not regret or doubt the decision because the long-term benefits will outweigh this hard time. But it's still hard.
I want to get her in school but she's in no shape yet. Tonight she was lying on the couch while five little girls around her age were running around squealing and having a blast and she had zero desire to join them. She wanted to be here so bad and enjoy it but she just feels like crap. It's so sad.
For the first time, I'm really feeling like I have a child who is fighting cancer and though there is compassion here, sympathy is something that others cannot spare.
2 days ago