The last few days have been harder, as we get deeper into the steroids. Yesterday was by far the hardest, but I’m sure having to go to the hospital again had something to do with it.
Liv is already getting really puffy, and she will only get a lot bigger over the next few weeks. Steroids make you mainly gain weight in your face and abdomen. The extremities gain a little, but not nearly as much. Like I’ve said in previous posts, they make you feel hungry all the time, and give you crazy cravings. Steroids hold on to salt, so you want to try to avoid sodium. Unfortunately, that is also what they crave. So trying to regulate what goes into the body of a little four year old who constantly wants to eat, and only has specific foods she wants to eat, has been the biggest challenge. She craves cheese, ketchup, and chips….all full of sodium. Awesome! I try to only allow a little bit of this in the day, but every time I tell her “no” or “let’s wait a little while before we have more of that”, meltdown central happens. Haha. She starts with a whine, which turns to a cry, which turns to a wail, which turns to full on yell-crying. It’s really fun 😉
I know that the steroids are only temporary and that the weight will come off and the puffiness will leave fairly quickly after she stops the steroids, but it is still stressful to watch. She’s already having really labored breathing, and her blood pressure registered high three times yesterday while we are at clinic. If it continues to stay high, they will have to put her on blood pressure meds. I really hate for her to have to go on even more meds than she is already on, so I’m trying so hard to be careful with sodium, but it is HARD! I feel so bad for her. I know she truly feels hungry, that she really is craving those foods that are bad for her, and that those tantrums and moods are not really my Liv. Every few minutes yesterday when she would throw a tantrum, or be so rude, the nurses would give me a sweet “knowing” smile and say, “Don’t worry, its just the steroids. Hang in there! She will come back!” We had one nurse tell us that this is definitely the hardest part of the treatment, and if we can get through induction, we can get through anything. I hope that is true!
We went in to clinic yesterday for just her labs, meeting with the doctor, and a chemo push (vincristine pushed through her port, this only takes about a minute or two). We were so excited that she didn’t need any sedation or procedures done! Wahoo! The second we walked into clinic, Liv started whimpering and whining. She wouldn’t look any of the nurses in the eyes or respond to anything that they asked. It is so hard for me to watch this. Partly because of pride, its kind of embarrassing to watch your child act impolitely when you have raised her better than that. I know that sounds so horrible, and I feel ashamed when I feel that way, but I do feel it. Another part of my pride is that these nurses don’t see how cute and sweet and fun my little girl is. I don’t think any of them have even heard her say one word. That’s really hard for me. But the hardest part is that I can tell that it just kills her to go back into that place every time. She is scared and sad and knows that something is wrong. She doesn’t want to be poked and prodded and talked to about things that she doesn’t understand. I hate to see how quickly she shuts down and withdraws from everyone.
We met with the doctor and he told us she is looking great and that all of my concerns about her side effects and mood were totally normal. He was very encouraging and told us to just hang in there! While we were chatting, her blood work numbers came back and her RBC’s were pretty low. Right now, a lot of her counts are low, thats the nature of induction. They want to wipe out the bad blood cells, and then later on in induction, she will begin to make new, healthy cells. The RBC’s were lower than normal low, however. He asked if she has seemed more tired lately. I told him she has been falling asleep in the middle of the day and sleeping for 2-3 hours. She wants to play Memory with me all the time, but after about five minutes of sitting up, she says she needs to lay back down because she’s too tired. He recommended a blood transfusion. He said the number right now is ok, but by next week will drop even further and he worries she will have a hard time with energy this week.
I’m grateful there was something they could do for her, but that meant we were stuck at the hospital for another 4-6 hours. They have to cross match her blood with blood from the blood bank to make sure it doesn’t clot or react to the donor blood. That takes 1-2 hours, and then the transfusion takes 2 hours, and then they have to keep you for 30 minutes and monitor you to be sure that you don’t have a bad reaction. While we were waiting for the cross match, Liv really wanted to go get lunch at Chick Fil A. So, thats what we did. As we were waiting for her food, she was jumping up and down and giggling and clapping her hands. It was like a kid waiting to get into Disneyland. Haha! Its hilarious to see how excited she gets over food!
She had a HUGE lunch, Rick and I didn’t even eat half what she did, and then we headed back over to the hospital. We got her all hooked up to her blood, and within five minutes she was begging for food again. I made the mistake of saying, “You just had a big lunch, Liv, let wait a little while.” She started whining and wailing and the nurses came running to check on her. “What’s wrong? What’s wrong?” (they were worried she was having a reaction). Of course, Liv wouldn’t respond and just kept crying. They stopped the transfusion because they were worried. I told them that she was mad because she wants more food. Haha! They all laughed, and got her food. This literally happened every 15-20 minutes for the whole two hours. They didn’t have very much that was gluten free in the clinic’s snack stash so Rick had to keep going down to the gift shop to get more to keep her quiet. It was quite a fiasco. That girl!! Like I said, this is all normal steroid behavior, but it is so hard to stay patient with her when in normal life I would never allow this behavior.
After 2 1/2 hours, we finally got to go home. She wanted to sit in Daci’s booster seat because the 5 point harness on her carseat was hurting her port spot. Unfortunately, Daci’s booster doesn’t have a back that makes it comfortable to lay your head back in and rest. So, about five minutes into the drive she started crying about wanting to be in the carseat. Ahhhh! The poor girl looked so miserable back there, she has so much more weight on her than she is used to, she can’t really maneuver her body, and her breathing is so labored. She just looked so uncomfortable! We were glad to get home and get her in bed. But then, of course, she was up a few times in the night with insomnia and wanting food. She is on steroids for 15 more days, and then it will take about a week for the effects to leave her system. We are praying for patience over here!
Although it has been rough, I have already met so many people on a cancer journey as well with a lot worse of a prognosis, and much worse side effects to medication. My heart hurts for them and I admire their strength so much. We are grateful for Liv’s prognosis and that everything is going so well, considering the fact that she has Leukemia.
Thanks again to all who have been so loving and supportive! We have had countless gifts for Liv dropped off, meals from ward members that seem to come on the days that we need them most, gifts of cleaning services (which my house is in desperate need of since the diagnosis), words of encouragement, and our names put on the prayer rolls of so many temples across the country. We are so blessed and so grateful!