They did warn us that mucositis would be extremely painful, but I wasn't quite prepared for seeing him like this. The nurse gave him morphine, and after a light massage of his back, he fell back asleep. Of course a couple hours later, I called for the nurse again as Keian was snoring - he doesn't snore and the only time I have heard that was just prior to his diagnosis when he had a mediastinal mass obstructing his airway.
Being in the hospital can very reassuring, but it definitely doesn't take away worry. Every day that I'm not at the hospital, it's as if I panic that something will go wrong when I'm not there. Especially at times where he has fevers and infections. Heck, even when I'm right beside him I barely sleep.
When he was born, we were so incredibly happy. He was so well behaved, rarely cried and slept through the night right from day 1 - Ryan and I often reminisce about how we had to set out alarms so that we could wake him up to eat, as many times he wouldn't wake on his own. Not in a million years would I think it would turn from being blissfully happy, to checking nightly to make sure he's still breathing. I can't even describe the feeling.
He woke this morning with a completely normal temperature, and seemingly felt better, but just before lunch, he spiked to 39.4 (103) again. Cultures still haven't came back from his blood, nor from his NPW. The waiting is like walking over hot coals numerous times a day.
I'm starting to get very scared for what is coming - it's coming so close, so fast. March 12th, Keian will be readmitted (hopeful to have a week between this admission and the next, so that he can get some fresh air at least) to begin his transplant conditioning and radiation. On March 22nd, Joren will be admitted and the process will begin. He's been through so much in these past few months and I know things only get more complicated.
Tomorrow we will get the key for the trailer - I am SO incredibly thankful to have the opportunity to stay on-site, while Keian faces the hardest part of his treatment.
Throughout this admission (Since January 29), Keian's spirits have been nothing short of amazing. He's always joking with the nurses, making funny noises and giggling.
Last night, Keian said; "I hate having leukemia and being sick, it's so boring". I can't even believe that the first thing that comes to his mind about his sickness is boredom. I think I could learn a few things from my own little boy...maybe we all could. He's taught me so much already - how to be the kind of Mother he needs, he's taught me patience, he's given me strength and courage to help him to possess those very things, he's taught me what it truly means to have hope and most of all, he has shown me how easy it is to love someone whole heartedly. All this from a little 5 year old.
And just as I was about to post this, vitals were being completed and Keian has yet another fever...it just won't quit and there are still no answers as to why.
"Your illness does not define you, your strength and courage does"