It wasn't just the leaving, of course. It is also the fear and worry about what is going to happen over the next few weeks. As one of our favorite doctors explained last night, the high dose chemo (busulfan) is very different from the regular chemo that a cancer patient gets. In normal chemo treatment, a patient's white blood cell count gradually drops over a ten day period. It gets low (say 1200), but it doesn't bottom out. And, they treat the low counts with drugs that help your stem cells produce new white blood cells very quickly. So, the recovery time is relatively quick. With busulfan, a patient's white blood cell count drops to zero and it drops very dramatically, over the course of just a couple days. In addition to killing all the white blood cells, the drug also kills all of your stem cells. So, they can't give you any medicine to help your stem cells reproduce or produce new white blood cells. You have no stem cells. If they weren't transplanting stem cells, a patient would die from this level of chemotherapy. Thus the need for a transplant. When they transplant the stem cells, it is then a waiting game...waiting for the stem cells to get in the body, reproduce and begin to create white blood cells. During this time, a patient feels pretty terrible and is at great risk of infection. Even after a patient is discharged, it can be six months (or longer) to completely recover.
Busulfan also carries risks above and beyond just the blood count issue. Too much of it and a patient goes into organ failure. They start with a test dose (that Parrish had on Tuesday). During and after that dose, they closely monitored Parrish's stats--drawing blood several times over the course of three hours after the dose. The doctors want to see how long it takes the chemo to get out of the bloodstream. They take all of Parrish's stats and plot them on a graph, which then tells them how strong to make the next dose. This monitoring continues during the entire treatment. It is a fine line...they have to give him enough of the busulfan so that it kills what it is supposed to, but not so much that it causes permanent damage (organ failure, cardiac arrest, etc....as in, serious damage). So you can see why we are worried and a little bit edgy about the next week. Nausea, vomiting, mouth sores, nose bleeds, hair loss, even risk of infection...these aren't necessarily pleasant or even insignificant. But they start to feel that way when you are advised of the major complications that could occur. Needless to say, even though they encourage family members not to spend the night in the BMT unit, regardless of where I am sleeping, I will be waiting on edge for a phone call from the nurse.
That is one of the reasons that my mom came back yesterday (well before she medically should have). She couldn't not be here, pain or not. She might not be able to lift or even stand for long periods of time. But, she has to be here because of the "what ifs" that I don't have the luxury of not thinking about. So, thankfully she is here. The boys are thrilled, and she got here just before I left with Parrish for the hospital. So, her arrival was a much-needed distraction for Ivey and Campbell. (Many thanks to Aunt Cathy for driving her back!)
Many of you have asked what or how we have told the boys. Parrish and I talked to them on Monday night over post-dinner ice cream sandwiches on the porch. Obviously Campbell doesn't really understand it all, but we talked to Ivey about how Daddy was going to have to go to the hospital for a little more medicine and how he was going to have to stay there for a little while. His response to our discussion was that he wanted to go to Emme and Guh's house in Memphis right.now. And then he listed all the toys he wanted to play with there and all the places he wanted to go right.now. Classic Ivey. He hasn't stopped talking about it either. It is his way of saying (I think) that he needs to escape to a super happy place for a little while. He gets that Daddy is going to the hospital, and he gets that life at home is going to be different...and that, try as we might, it is going to be a little bit sadder. So, he wants to go to Emme and Guh's, where it is, at least in his mind, all fun and games, all the time (which it really is). Depending on how things go with my mom's neck/back and how things are here, I am hopeful that we will be able to let the boys escape to Memphis soon.
Regardless of whether they flee to their happy place for a little while or not, it is going to be a rough month. There is just no way around it. A therapist told me that the best thing I can do for them is just to recognize that. Regardless of their age, the boys are going to feel the loss of Parrish at home. Of course children are resilient...but please, please don't tell me that. As the therapist said, my concern is not that they turn into axe murderers as adults because their father had cancer. My concern is the present. Resiliency really doesn't matter. The present does, and it is just going to be hard. According to the professional (I take no credit for the thoughts), the most important thing I (and others) can do for them is to provide consistency, compassion and connection. Consistency means being in familiar places, doing familiar things, seeing familiar people. This isn't the time to ship the kids off to stay with a random aunt in a place they have never been. This isn't the time to try out a new babysitter or change schools. Compassion is recognizing that this is tough for them. They might not be able to articulate it in words, but we should watch for cues in behavior or needs or wants and let them express their feelings however they see fit. Connection is making sure they maintain a relationship with Parrish during this time, albeit a long distance one. My kids aren't the best at FaceTime or Skype...it can tend to upset them more than anything. But, there are other ways to stay connected. A friend whose husband was in the hospital for awhile said that she would pass fist bumps back and forth between her husband and the kids. A quick and simple reminder that daddy was thinking about them. The therapist suggested that Ivey create a weekly book of his activities that I can bring to Parrish--we can print off photos, Ivey can draw pictures or dictate what I should write. And, on the flip side, I can take pictures of Parrish's hospital room, his nurse, his doctor, etc and show Ivey where Daddy is and what he is doing. Daily reminders that Daddy is still here and thinking about his boys, which of course he constantly is.
Right now, Parrish is almost done with today's busulfan dose. The nurse is about to don the hazmat gear to disconnect his IV. Ironically, the nurse has to wear special gloves, a thick protective gown and goggles when handling the container with the high dose chemo. And, the medicine comes in a special glass container, not a plastic drip bag. They don't want to risk any of the toxic chemical leaking out. Of course, then they hook Parrish up and put this chemical directly into his blood stream. The irony is not lost on us for sure.
Many thanks for all the thoughts and prayers as we head into the next phase of this journey. We appreciate them more than you will ever know.
Much love,
Molly
Will and I have been paying for you since we met you Tuesday. May God give you strength.
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