Unit 1
Weight: 13.1 kg
Nurses: Kelly/Amy
WBC: 0.0
Well we are struggling today to say the least. Your mouth sores are so bad, but you still have hunger pains. This is a vicious cycle of wanting to eat and then being unable to eat it. You ask for the food, sometimes even try to eat it and then decide you can't eat it. As much as we tell you that you can't eat the food or that the food hurts your mouth you throw a fit until we bring the food to you. I try to remove the tray and put it out of your eye sight but you actually find a bit of comfort with the food around you. It is very frustrating and requires a lot of patience to help you right now. You scream for food and insist we go and make it, which we eventually do because we want to keep you calm, but then you get upset because you can't eat it. I wish someone could tell us what we should do but there doesn't seem to be an answer.
You are visibly swollen in your cheeks due to the mouth sores. You also still have bum sores, which cause you pain when you are sitting up. Your eyes are a bit swollen, especially when you have just woken up. The good news is that you do not have excess secretions this time and have no problems with your respiratory system. All we can do now is work with APS to get you comfortable. Just when we think we have your pain managed, you seems to get worse. Again, we are on the PCA and I am thinking dad will probably be up through the night pressing it.
There were some positives today. Mark, the music man, came to play in your room. At first we thought you might not want to play today, but you quickly change your mind. I video tape you dancing and moving to the music, which you now watch over and over again. Another highlight was when you were lying down and you whispered to me that you wanted to kiss your nurse and you were upset that she left and you didn't get a chance to give her a kiss. When Amy returned to the room I told her what you said to me and she came over and you gave a kiss on the cheek. You and Amy were very happy...lol. Lastly, you pulled your blankie over your head when the Resident came in to check you over. You stayed like this during the entire examination. Thank goodness for some of these small moments to help through all the difficult ones.
You had some visitors today. Maggie Harrison, Dr. Harrison's wife (our family doctor), came to see you. I have met with Maggie and she has been a great support as her son had Leukemia too. It is nice to connect with someone that has gone through something very similar. Also, Sarah came to visit. She was up for a day trip and stopped in to visit with you. You didn't visit too much with anyone, but I know you enjoy listening to conversation. The visits certainly help your dad and I.
Well I am hoping for your counts to go up so you can start healing. I just wish I could take this hurt away but all I can do is try to stay patient and make you comfortable. You are such a little warrior and I am amazed everyday with your incredible strength.
Love you buddy,
Mom
I just want to add that I am feeling very frustrated with this whole process. I was very diligent with the mouth washes and overall oral hygiene during and after your chemo treatment. I did this with the hope that you wouldn't be back with these mouth sores. Somehow I was convinced that we wouldn't be dealing with the mouth sores to the extent that we are again. It beats me down and makes me very negative, which I know is not what is best right now. It looks like in our next cycle, we will be using the same meds, just at a lighter dose, so I must get my mind around the fact that this going to happen again. I really hope that we are able to get back to Medicine Hat once your counts recover. This environment is draining on both of us. We aer con
Love,
Dad
Here are some pictures of you playing music with Mark.
Here is your smile for the day...
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