Physical therapy, auntie therapy, chemotherapy

Today was a bit of a bummer- Daniel did not feel well most of the day. He threw up again this morning about 40 minutes after he had taken his meds, although the color indicated he had kept most of them down, so they decided he didn't have to retake them. Which is a huge relief, as bad as his dexamethasone (steroid) tastes, any time we don't have to take it twice is a really good thing. Mary spent most of the day caring for Alex while I spent time with Daniel and Bobby went to work for the first time since this all broke loose, since no procedures were scheduled. The physical therapist came by to assess his not-walking issue, and worked with (infuriated) him a bit. Her theory is that aside from the pain in his bones from the cancer, he has some sensory processing issues with his feet making him unwilling to put weight on the balls of his feet or his midfoot, just the heels or the tops of his toes. So she worked with me, showing me how to try to desensitize the bottoms of his feet so he might be willing to have them touch the floor again, and with Daniel, encouraging him to do things by himself. Then it was across the hall to an oncology class, basically what to expect with treatment and protocals for when we take him home. Our next several years will be ones of intense frequent hand washing and Purell by every door, screening anyone we come in contact with for their entire medical history (ok, just that they aren't sick and have not been around anyone who is sick, especially with the vaccine preventable diseases like chicken pox that can go systemic, throughout the entire body and affect organs, deadly for a child with no immune system), dietary and food safety stuff, like requesting that they open a fresh bag of buns at a fast food restaurant to minimize the chances of bacteria, no buffets, no food that has sat out for any amount of time. We also went over dozens of protocals of when to call in, when to race to the emergency room, how to present our child's condition when we got there so we didn't get thrown into a waiting room full of contagious people. And we have to keep our pet clean and vaccinated. And a bath every day. All these things so contrary to our lifestyle of easy, breezy, germ-friendly confidence that bacteria won't cause any real harm, and just adds to our immunity in the long run. Which it does. Until someone in your household has no immunity and no ability to build it. Then germs threaten his life, and we have to take them seriously. The magnitude by which our life is about to change overwhelms me a bit. I know we can do it, but it is a new normal. One that will take a bit of adjustment.

Speaking of which, I find myself feeling incredibly sentimental over the bubba-who-was, and the last few reminders of him. I lie beside him as he sleeps, staring at and memorizing the way his long, silky lashes lie over his porcelain cheeks, the way his eyebrows slope tragically down his forehead, and I mess his hair obsessively, feeling the way his blonde curls slide between my fingers. In two to four weeks, these reminders of my healthy boy will be gone. Six bald months is a short time in the scheme of things, but it only took about six weeks to almost forget that there was ever a time he could walk, even run, jump, and climb, so I know that all too soon, I will hardly be able to comprehend that once, my child looked normal, with sandy little boy curls and the longest, blackest lashes rimming his beautiful blue eyes.

The latest word is that perhaps we will be allowed to go home tomorrow, if he tolerates his first dose of pegaspergase, another chemo drug, in the morning. His neutrophils are at rock bottom, which they should be at this point in his treatment, and his immunity is nonexistant, but there is nothing in particular we need to be here for except for ongoing chemo, which can be done in the clinic as an outpatient. We can monitor him at home and bring him back to be admitted again if he develops a fever or a bacterial infection, which it sounds like almost certainly will happen at least a few times. It is terrifying to me that I am taking home a boy who has very low platelets, so he could lose his ability for his blood to clot, low red blood cells, and extremely low white blood cells, but as the chemo does it's job and his bone marrow begins to function as it should, these issues should slowly resolve.

And our gratitude continues, because chemo is predicted to be all we need. Other kids in this unit have had and are having ongoing chemo, radiation, none marrow transplants, and cannot be seen by anyone not gowned, masked, gloved, and hair netted. They are hostages in isolation. This is not us. We are the lucky ones here. Again, we marvel at the irony of our new definition of things like good luck, good news, good days.