Yesterday afternoon the doctors were supposed to tell us the final results of Chloe’s spinal tap. I realized by evening that they never came in to tell us. We were informed on Thursday afternoon that the preliminary results looked promising for not having leukemia cells in the cerebral spinal fluid (CSF). However we were awaiting the final word. When the oncologists made their rounds this morning, I had to ask. I figured no news was good news yesterday, but I just had to know for sure. They told me that she was clear. They said it so matter-of-factly, without any excitement whatsoever. As if they were ordering a latte. But to me this is the best news I have heard all week. As someone who really cares about spines and nervous system health, this means the world to me, that they won’t have to do weekly spinal taps in order to put chemotherapy directly into her spinal canal. WHEW!!!!!!!!!!!!!!!!!!!!!!!
I’d like to think that it was all of the chiropractic care keeping her spine healthy that kept it cancer free, but childhood leukemia is such mystery as to how, where, and when it strikes, that I cannot even get close to taking credit for that. But still, I am doing a little celebratory dance. The fact that she won’t need extra spinal taps and extra chemo is just about as good as it gets right now for us.
On an inward note, I am grieving. At first I grieved the loss of my normal life (I still am), and I have moments of grieving to see her in such misery. We grieve as we learn the reality of just how sick her poor little body is, and the fact that there’s not much we (as her parents) can do to help it. I am feeling a loss of my perception of her body being so pure, of never having had any prescription drugs or antibiotics, and now she’s going to be on medications constantly (including antibiotics) for the time to come. We are having to adapt to a life that is no longer on our own terms. I know it is temporary, but I am in it right now and it has its challenges. I miss my dogs. Terribly. Whenever I go on vacation I do no miss my dogs. But this is different. This is an unexpected long-term separation, as I will be here with Chloe for the better part of the next month (give or take). I miss the things I took for granted at home: having complete control over what I ate, cooking in my own kitchen, walking my dogs (even though it was a chore), hiking my neighborhood trails and being able to be alone with my thoughts in nature, and I miss taking Chloe to school. I miss her teacher and her class.
She has a wonderful teacher and a very special class of kids. I miss my routine, and I even miss walking around the house to get the kids ready for school or to do chores. We have been pretty immobile here so far. There is a gym on the other side of this medical complex. I hear it’s where they film the Biggest Looser show (I haven’t seen the show), so it’s a famous gym. Parents of children who are in the hospital here get to use it for free! The first thing I packed when we left home was my gym bag. At that point we only thought we’d be gone for up to a week. I’m SO glad I brought it (not knowing there was gym available). Exercise keeps me grounded in my body and it keeps me sane.
I am also pretty much going to have to let go of my chiropractic practice for the time being so I can focus on Chloe’s healing. While the mom in me welcomes a break from running a business, I will really miss seeing and serving my clients. It was the best part of my job. I will undoubtedly resume my practice once Chloe heals. Chiropractic is my life’s work and my calling, and I can’t really see my life without it. I always remember what one of my mentors Jay told me, about the order of importance of things in life. He said God (or spirituality) comes first, then family, then chiropractic. I never forgot that, and am needing those wise words now more than ever.
I’m sure that once Craig and Jordan go home, I will have plenty of time to get to the gym, and I will fall into a bit of a routine. I will hopefully have some things in my life here to remind me of who I am and what I love. I can see how it’s easy to lose touch with yourself while living in a hospital with a sick kid. I will have a chance to get to know myself better. Who am I outside of my normal routine and friends and job, which hold me up in Durango? Who am I outside of my comfort zone? I’ve already had a lot of insight into some things. A local chiropractor came here this morning to adjust us. He reminded me that our greatest gifts come from dealing with the hardest of times. I am already seeing how this is true. Despite this diagnosis, somewhere in the process of experiencing it are some gems (of heart, mind, and spirit) revealing themselves to me. Am I being too new-age-y for you? I’ll sum up and move on. Let’s just say that I am growing from this experience.
I am SO incredibly grateful to the chiropractors who are teaming up to make sure my daughter and I are cared for. At a time like this it is imperative that our spines and nervous systems are functioning optimally. For Chloe, it will help her body clear out any physical trauma from the medical procedures and the chemo drugs. For me, it will keep me feeling my best (and connected to myself) so that I can take care of her.
Overall, she handled her first dose of chemotherapy yesterday pretty well. She doesn’t even really know she’s receiving it, since it comes in through her IV. She did spike a fever afterwards, as that is a side affect of one of the chemo drugs. She was miserable with some involuntary shivering that came with this fever, which was alarming for Craig and myself. She also vomited, but she has vomited a few times over the last several days. She’s not hungry, and very sedentary and her guts are backed up. So once we get things moving again I’m hoping she will have a little bit of an appetite. We will meet with the dietitian on Monday. Right now there is no overall cause for real concern and if there were I would tell you when I report this stuff to you. (If there’s cause for concern, I will be letting you all know because Craig and I will be needing your words of encouragement the most during those times.)
The past couple of days, she’s been a bit grumpy. She takes it out on me, not on the nurses (which I am okay with!). The first 24 hours we were here she was really content and sweet, but the newness of hospital life has quickly worn off and she’s also just not feeling well. I am telling myself she is getting better every day, even if it doesn’t look like it based on her symptoms. She will have chemotherapy every day for the first 10 days, and it will wipe out her immune system. They keep her here for a couple of weeks afterwards (rather than sending her home) where she will be best protected from germs while her immune system regenerates it’s bacteria and virus fighting cells. I am marking days (of chemo treatments) off the calendar. Right now it feels good to have gotten the first day over with. Her hair will fall out in a couple of weeks and honestly, anticipating that the hardest part for me. Or at least, the part that I fear the most. She is sleeping a lot- her body needs the rest to do it’s healing work!
Please let me know if the photos (from the last post) are showing up an okay size. I think you can click on them to see them larger.
I’ll leave you with this photo- which I took in the car on the way up here. She slept for most of the drive but then really perked up at the end.
Steph and Family