The chemo started immediately after she got her IV line put in. It started with two drugs, administered on a specific schedule over a three-day period.
Chemo affects your appetite, but at this point, it didn’t make much difference. She was still in recovery from that major brain surgery, and was not even sitting up, much less eating or drinking. Her nutrition was administered through an NG tube, which we would very soon learn to maintain.
We found ourselves getting a crash course in nursing. Since I would be the primary caregiver, being the one with her most of the time, I received most of the instruction.
The NG tube was the simplest to learn, in part. It was a simple matter to administer meds, water, and food all in the same manner. Bactrim on Monday and Tuesday, Keppra every day, and that wasn’t even counting the other medications that cropped up over the months. Fluconazole, Bacitracin, Cinnamycin, Cyclohexamide… I grew to recognize the names and was able to converse with the nurses about which ones she was getting. Not too long ago, the doctor first mentioned the name “Choroid Plexus Carcinoma,” and the words sounded like gibberish from his mouth. Now I was becoming familiar with medical terms, medications, and processes.
We also learned how to place an NG tube – a tense process for anyone involved, and by no means a one-person job. One would physically hold her down, while the other was to shove the long rubber tube down her throat, hoping it went in right and there was no gagging. I eventually learned the exact placement of the dressing for the NG tube, the tape designed to hold it in place, so that it would best retain its stickiness instead of being peeled off by a very active two-year-old.
The next stage of “nurse mom” teaching was for how to maintain her internal IV line. She had a “double lumen Hickman” line – the fact that I even knew that and could quote it to any nurse we met at our outpatient clinic appointments later on was testament to how much my life had changed. Each side was maintained via a flush and a Heparin dose, to prevent clotting in the line.
This one was more nerve-wracking. The line fed directly into her body, bypassing the body’s first defenses for keeping out germs. The slightest contamination could introduce infection into her battered body.
Yet, over time, this, too, I came to manage without a second thought. It was a simple matter to sit down and administer the necessary procedure; even little girl knew what it was all about and helped with the prep.
We still needed to learn how to change the dressing for the IV, but they allowed us a grace period while we adjusted with everything else. But finally, the day came when we would learn how to change that one, too.
Like with the IV maintenance, the dressing absolutely had to be a sterile environment. Peel the tape off, swab the area with a carefully constructed array of cleansing tools, wait for it to dry – we learned the hard way that if you apply the new dressing too quickly, before it’s dry, then it can cause a rash. Apply the biopatch, arrange the IV in just such away, and place the sticky tagaderm.
Tagaderm was another word that became familiar. It was also included in the stack of items we found ourselves adding to the diaper bag.
So much had changed since that first midnight ride to Seattle. A sudden, unexpected surgery, followed by a whirlwind of medical care, treatments, and crash-course learning. We were not just any “normal” family now. Our life became defined by medical care. Were we going to stay out late tonight? Bring the evening meds. Going anywhere for longer than an hour? Store the assortment of NG tube care. Overnight? Don’t forget the packet to maintain the IV line. And never, ever leave without the smaller packet for the dressing or the emergency IV line care.
We were the ones in the restaurant giving our kid her water through a tube that ran up her nose. We couldn’t give her Tylenol, but we knew just how to administer medications that most people couldn’t pronounce. A fever was possible cause for alarm. Most parents would wait and sweat out a fever. For us, anything over 100 would put her in the hospital, or even a prolonged low-grade fever. Prolonged for us meant anything longer than eight hours.
I found myself coming up with small games, ways to get her moving, to use the right side, which had been devastated by the surgery. It was a small victory when she was able to sit just for five minutes on her own, happily playing without Mommy nearby. Where I once was concerned about health and nutrition, now I cheered just to see her eat a few bites of McDonald’s chicken nuggets.
Being a nursemom became my world. I never had any interest in the medical field, but now I found myself playing full-time nurse to one little girl. And in spite of it all, that tiny superhero kept trooping on, fighting both disease and the effects of chemo.
We are home and settling in, our things still scattered between the back of the van and the living room floor. Little girl is excited to be home, rewarding us with cheerful grins and spurts of laughter. She is getting her cuddle time in with some of her favorite people, Auntie and Grandma and Grandpa.
I’m sure the word has gotten around by now about our latest chemo update, so here are the full details. The board met on Wednesday to discuss our case, and we received a call from Dr. Geyer, her oncologist, the next day.
The surgery went well, he said. The surgeon was very satisfied with the results, and when asked about certain “spots” that had shown up on the MRI post-op, he said that his opinion, based on physically being there to see for himself, was that it was just scar tissue.
The piece they removed during the surgery was mingled scar tissue and tumor. The tumor itself was small, about the size of a fingertip – sounds small for a tumor, but with this kind of cancer, we weren’t leaving anything to chance. They examined it under the microscope to check the status of the cancer, and found promising results. The tumor was sickly, and did not at all look like a healthy tumor, or one that would be able to grow. It seemed that it had been affected by something – ostensibly, the chemo.
They are confident that they were able to extract all of the tumor. However, there is no way to test for the individual cells, the roots, so to speak. Based on that, the doctor recommended finishing up the two rounds (each a month long) of chemo that we had left – “just in case, since obviously it has had some effect so far.”
This leaves us with a window of opportunity, where we can decide for ourselves where to go. We never cared for the chemo itself, but without knowing more about it ourselves, there wasn’t much option, especially since it was such a definite that it was needed. Now the playing field has changed. We have progressed into a gray area, one where even the doctor was on the fence about whether to proceed. His was not a definite answer, but a “just in case.”
Part of the consideration is the knowledge that this type of cancer has a high chance of being caused by a genetic mutation, one that increases the risk for cancer. Chemo itself causes cancer, so with this gene, her chances for future cancers are even higher. The verdict is still out on that as we wait for test results, but it is definitely enough to be thinking about. We are meeting with the doctors in just under two weeks to discuss everything.
There is also the possibilities of other treatments, as well. Some, we are already doing, and others we will be looking into.
For now, the immediate concern is recovery. She doesn’t appear to have any setbacks from the surgery, since it was much smaller this time, but she is still not quite up to walking yet, still building her strength. Her appetite also fluctuates quite a bit, so we are working on getting her back on track for eating and drinking.
They are keeping a close eye on her ventricles to be sure she does not develop hydrocephalus, which is swelling of the brain fluid, in which case she would need a shunt.
We are done with chemo, but it by no means that we are done with our journey, or the costs of it. We will still be making our way to Seattle for quite some time – next week alone we have two separate appointments. On the home front, being home suddenly brings up the need for a separate room, which up to this point has been pushed to the back burner. Currently, we are staying with my in-laws, where we moved to after the diagnosis, in order to better focus our attention and finances where it needed to be. The plan is to refurbish the back room, which is separate from the house, and to extend it slightly.
It’s been a long six months to get here, and the journey is hardly over yet – just the first stage of it. Your continued prayers, gifts, and notes have been a huge blessing to us – something I will write about specifically very soon, I imagine.