Day 57 of Lochlan’s healing journey with nearhaploid leukemia was a long and boring one. We filled the time with lots of movies and video games and chats together but the days here can feel like lifetimes when you’re 9.
Lochlan’s bloodwork showed he needed a little top up of red blood cells since his hemoglobin was low. So after antibiotics he had a unit of blood given to him. Because he was hooked up all day they didn’t change his port dressing or “de access” him. He was relieved about that after a morning of worry and tears over the thought of it.
Because his vitals are so good and he seems to be doing so well, they are thinking of moving ahead with his regularly planned treatment. So tomorrow, he more than likely will have the lumbar puncture and big chemo that he originally was supposed to get back at our home hospital today. No real break in his treatment after all. I’m actually happy he’ll get his procedure done here because they use a lighter sedation than they do at home, and so I can be with him longer and away from him less. I also like that the sedative isn’t as potent on his little body when he has so much going on already.
Lochlan told me today that sometimes he wakes up in the morning, and just before he opens his eyes he wishes he could be empty—- empty of tubes and devices inside of him, empty of medicine, empty of chemo. Just empty. Sigh.
His hair is really coming out quickly now. He finds it fun to pinch a bunch and pull it out since it doesn’t hurt at all. He laughs about it while I weep.
Mitch asked me today how I was doing, and my answer was simply tired. I’m tired of having to be strong for Lochlan. I’m tired of having to be “on” 100% of the time, answering a million questions and remembering and relaying every single tiny detail for medical professionals. I’m tired of having to be on guard all the time. I’m tired of watching my baby go through this. I’m tired of being away from my husband, and my 12 year old and the life we’ve built together. I’m tired of not being me and doing the things I love. I’m tired of it all. But Matthew 11:28 says, “Come to me all who are weary and I will give you rest”. I’m relying on that tonight.
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