Somehow last week, we hit our one month in the hospital mark and didn’t even notice. It’s hard to believe, yet the time is taking its toll on us.
This week, we’re all finding we miss our old lives, everything from our food from home to waking up in the same house to just being able to go outside and breathe fresh air whenever we want to, to pick up our boy and walk with him wherever we like without dragging a big bulky IV pole with us.
When we learned of Caemon’s diagnosis, we knew our world was being turned upside down, but it takes time to grasp just how different life will be. It’s almost impossible to comprehend such a life revolving around blood draws and beeping machines, nurses/janitors/doctors/dietitians coming in at all hours of the day and night, eating out of boxes, and sleeping on fold out beds–or staying in a house for families of children who are ill. One never expects to be that family, and even in the midst of it, it doesn’t quite seem real.
Jodi and I are craving time at home just sitting on the sofa after Caemon falls asleep, cooking in our kitchen, enjoying the last of our garden, snuggling our cats, hearing our boy running down the hallway because he’s got something really important to do. Caemon is missing it too. He’s talked about some of our things like our rocking chair as something we used to have. A month is such a long time in the life of a three-year-old. It’s getting harder for him to realize that home is still there, that it’s a place where we will return.
We don’t know yet, though, when we will get to go home. At present, Caemon’s blood counts are very, very low. He has almost no white blood cells, nearly no neutrophils, enough red blood cells to keep him from needing a transfusion today, but barely. This is all very good, as it is what the chemotherapy is meant to do. Now we wait for those counts to rise again in hopes that the leukemia cells (blasts) don’t come back up too. Once the counts rise, they will biopsy his bone marrow again, and we’ll find out if we can go home (this depends on how many leukemia cells are found in the marrow at that time). If he is in a sort of remission, we’ll go home for a few days–no more than a week–and return for his next round of chemo. This next round may be his last round before we move on to the bone marrow transplant, or he may need another. Whether or not he needs another, when exactly transplant will happened are also still to be determined. If, however, leukemia blasts are still present in his marrow, the likelihood of us going home will be pretty slim. Because AML is so aggressive (as opposed to JMML, which is more of a chronic state), it is also fairly unpredictable. Last time Caemon had a downturn, it happened in the course of a day. We can’t risk that happening at home, of course, so if the cells are there, we stay here. We’re preparing ourselves to be here. It will be a glorious surprise if we are able to go home for a few days’ respite, but in our minds, we’re here for the long haul.
Meanwhile, we’re trying to find a way to feel better here. We are making sure Caemon is allowed to be unhooked from his IV for a couple of hours a day so that he can play at the playroom untethered. This has been very special for all of us. We’re making food as much as we can and have found some lovely neighborhood markets where we can pick up a few of our family favorites. Caemon, for example, is presently working on getting his weight back up by eating something like four Brown Cow Cream Top maple yogurts every day. We have cleaned out those neighborhood stores of their supply. Jodi and I are joining the gym that the hospital staff and students use. We’re doing everything we can to make this tolerable for us all. The fact still remains, however, that we miss our lives. We’re all homesick in the worst way, and not knowing when we’ll get back to our lives is just plain hard right now.