Ashtyn looks so much better than a week ago. She isn’t nearly as sick, however she still feels crummy. Of course she does. I have no idea what it feels like to have no white blood cells, low platelets, and have a body that is recovering from chemo. Her throat and mouth continue to hurt. Swallowing is still painful. She does try to drink a sip or two of water a day. She has a rash that is affecting most of her body. Her white blood cell count hasn’t gone up. The thought is that she’s probably making white blood cells but they are being used to heal her mouth and throat before being counted in her blood tests. Most of her medications were stopped once she no longer had a temperature. She continues to be on a couple antibiotics, IV Benadryl for her rash, one medication for nausea, and a narcotic every two hours for pain. Today she had another platelet transfusion. IV nutrition is continuously going through her central line since she is still unable to eat or drink. On the up side, she is no longer being annoyed by thick mucous in her mouth and lungs, and she is walking and talking well. The last time she left her room was when she visited with her brothers and sister, posted under “Ashtyn’s Siblings Come To Visit.” After 16 days she left her room and walked in the halls with physical therapy. You go girl!
We are both on a nocturnal schedule. Right now it is 3 am and Ashtyn is wide awake watching the Disney channel. She normally sleeps all day, with occupational or physical therapy waking her to do some sort of activity at 2 pm. She is never happy being woken up. After 4 pm Ashtyn’s body finally wakes up and doesn’t really fall back asleep until after 2 am. The medical staff informed me that this “habit” isn’t abnormal. Good. That makes me feel less irresponsible.
Ashtyn does look forward to when she gets to go home. Whether she goes home in a week or two, it seems far distant for her. “It seems like my throat will never feel good to where I can drink without pain. It’s hard to think that I will actually be able to sit in a restaurant and drink without any effort. It doesn’t seem like I will ever get to where I feel good.” Being the talker that I am, I always have something to say, “Ashtyn, remember when you would get sick from time to time throughout your life when you didn’t want to go to school? You didn’t feel up to doing anything except sit around. Eventually you always would feel better and back to yourself. I know you aren’t feeling well right now. Soon you will. You will then feel up to talking to people on the phone, having visitors, and FaceTiming friends and family. You will want to look in the mirror and notice how beautiful you are. You will enjoy coming up with cool fashions you can do with different hats. You will feel well enough to be happy and have fun. It will come.” She agreed.
I decided to start a nightly routine having Ashtyn tell me five things she is grateful for that day. Tonight was our first night so she came up with ten things. Ashtyn is grateful…
- “for the Broviac and that I didn’t get a port.” (A lot of leukemia patients get a port that sits underneath the skin. There are pros and cons to each. With a port a needle poke is required to access it at least every week. I’m not an expert on ports. Ashtyn is just grateful for her Broviac central line because she never has to be poked with a needle.)
- for blankets.
- hydrocortisone cream that helps my itchy rash.
- that one day I will be able to drink.
- for beds.
- for tissue.
- for lotion.
- for technology to text, call, and FaceTime.
- for Chapstick.
- for prayers.
President Thomas S. Monson reminds us, “We live in a unique time in the world’s history. We are blessed with so very much. And yet it is sometimes difficult to view the problems and permissiveness around us and not become discouraged. I have found that, rather than dwelling on the negative, if we will take a step back and consider the blessings in our lives, including seemingly small, sometimes overlooked blessings, we can find greater happiness.”