Part of our overwhelm here is all of the help we are getting. Her hospital room is a constantly revolving door of any and all kinds of helpers. This is the most comprehensive care facility I could ever imagine. They care for whole families, not just for patients. They have a person for everything from someone to dump her pee (yes, they measure her fluid intake and output), someone to help us with family resources (i.e., procuring funds from organizations designed to help families of leukemia patients), psychotherapists, social workers, and my favorite: child life specialists. Having never heard of this before this week, I have learned it is a position which requires a 4 year degree and maybe even a master’s degree, whereby their sole purpose is to explain to child patients and their siblings on their terms what is going on with their illness and treatments. They possess the calmest, zen-est, most soothing demeanor that I or anyone could ever ask for. And they do this without being the least bit patronizing or condescending. They also make sure that Craig and my needs are being met around all of the communication with the kids, and they are chock full of ideas for how to involve Jordan so that he doesn’t feel left out. And then, there are the toys. Chloe has gotten a stuffed animal or toy after every procedure, and just a while ago the child life specialist brought a stack of games, toys, and puzzles for each of the kids, “Just because” (or maybe it was because she was getting her first chemo treatment). Each of the kids got a lego set and so they are thrilled. It’s the happiest Chloe has been all day. I had trouble capturing it (her happiness) on camera.
I found out yesterday that they even have a teacher on staff, to communicate with her school and help her finish second grade. This really warmed my heart, that they even take care of her schooling while she’s here. I was worried that she might have to repeat 2nd grade, which would affect her socially, forever, if she had to fall behind a grade.
The majorly impressive aspect of our care, of course, is the medical staff. They truly embody the love of service. They are here to help us, and it shows in everything they do. Every time we meet with a doctor, they ask us if we have questions. After we are done asking them our questions, they ask us if we have any more questions. They speak to us kindly, with compassion, and all of the clarity and confidence of world class experts in oncology. They are not in a hurry to leave our room. We have not once been given any sort of information or attitude that is not positive. There are some harsh realities to the side effects of the treatment, and also there’s the reality of the risks of having a suppressed immune system. They are obligated to educate us on the risks and how to best avoid them. But everyone is just so absolutely confident that she will heal from this. It helps us tremendously, as we need pillars of strength to lean into. The nursing staff is so wonderfully present and supportive. I feel like I’m not exactly putting it into words. But their clarity is starting to seep into us as well, as we are uploading this new world into our systems. It is somewhat comforting and healing for us to be in this medical bubble, given the circumstances of her illness. This being Chloe’s first day of chemo, combined with the fact that my mind is still struggling to wrap itself around the harsh reality that my daughter needs chemo to heal, I broke down two separate times and cried on the shoulder of an oncologist and a nurse today. They really get the pain of this process for the families. It helps.
This morning Craig bonded with the chaplain for the oncology floor (floor number seven). He is going to come by and visit us early next week. Today was such a(nother) whirlwind that he didn’t have time to come into our room. This morning Craig and I took a class on chemotherapy (lovely) and what to expect and how to protect her weakened immune system from infection.
This afternoon, we had a visit from Needham’s own Sallie Kautter, the counselor there. She brought us some towels from home, which are much needed since the RMD (Ronald McDonald House) has these tiny, starchy towels. She also brought a whole package of hand-made get well cards from her classmates and a knock knock joke book that they made for her. I could tell the class put a lot of thought into their projects and they were well received by Chloe. We are going to hang the cards all over the walls in her room.
Saturday, January 24
I spent the night with her last night, and it was a much quieter night than the first night that I spent here (Tuesday). She wakes up every couple of hours to use the bathroom (since she is on IV fluids), and she presses the call button to get help from the nurse. I hear her say, “I need to go to the baffroom,” into the microphone on the pager. I love hearing her sweet voice while she takes care of her own needs. She needs help walking around because she is hooked up to an IV cart with many cords and wires on it that can potentially drag and tangle in the cart wheels.
I will be posting much more. It looks like weekends are pretty quiet around here, as all of the non-medical support staff are not in on the weekends.
Steph and Family