Tag Archives: treatment

Vaccines: The Other Side of the Coin

This quote showed up in my newsfeed on Facebook. This topic is one I’ve been wanting to comment on for a while, as I’ve been given a different perspective on things after my daughter’s cancer ordeal. The quote –
“Whether you’re pro-vaccine, anti-vaccine, or fall somewhere in the middle, the questions you need to ask yourselves are as follows:
Do you want to live in a world, where you cannot freely refuse a medical procedure that carries risk of injury or death? I’m not questioning your comfort level with today’s vaccine schedule, because today’s vaccine schedule will change. New vaccines and additional doses are added all the time. children today receive as many as 49 doses of 14 vaccines before they reach age six, which is roughly 12 times higher than the number of vaccines administered to children back in 1940. With more than 220 new vaccines in the developmental pipeline for children and adults…and no end in sight..the question you must ask yourself is ARE YOU CERTAIN you will be 100% comfortable with vaccines that are added to the mandated list in the future? If you say that yes, you’re comfortable, then you’re either a) not expecting to be a parent or grandparent, b) don’t have to worry about it because your kids are grown and out of the house, or c) lying to prove a point. No critical thinker, no honest person, would ever sign off on the sight-unseen vaccine schedule of the future. And yet that’s what you’re doing when you condemn the people who are fighting for your right to refuse. YOU have the right to refuse, should you ever choose to use it, because the very “anti-vaccine” people you demonize have been fighting for us all. 
Right now, the burden of “herd immunity” falls on small children, but that is changing. Vaccine manufacturers see an untapped market in adult vaccines and are coming for you next. What will you do if your state, your employer, or your insurance company forces you to get a vaccine that you simply don’t want? It hasn’t happened to you yet, but if the right to refuse is eroded, it will happen to you sooner than you might think. Who then will you turn to? Your legislators who get campaign donations from pharmaceutical companies? The CDC that has former pharma executives sitting on the board? Who will you turn to if you ever want to say no? There will be no one. 
Once we enter the slippery slope of removing and individual’s right to refuse medical procedures that carry a risk of injury or death, once we remove an individual’s right to speak for him/herself and his/her children, we open ourselves up to an insidious new era, where other drugs and other procedures can be mandated. I heard (on NPR, interestingly enough) that there are people who want to test for a gene marker that’s been found in mass shooters in the hopes that they can put the carriers of that gene on medications in early childhood. Sounds great, right? But many of us carry genes that will never be expressed. You could be a carrier of that gene. Or your child could be a carrier. So if we follow the “for the greater good” mentality behind vaccines (or the Nazi’s “for the greater good” mentality behind eugenics (breeding out illness), we are looking at forcing people who may never express a sociopathic gene to take antipsychotics, just in case. Because that’s what forced vaccination does. It asks children who may never come into contact with a particular virus to accept a vaccine just in case. And that’s what eugenics was all about. It sterilizes people who can pass on a genetic disease just in case. Forced vaccination is a human rights violation, and to support it when you know that the government’s own Vaccine Adverse Events Reporting System exists and lists people who have died as a result of vaccines is unethical at best, sociopathic at worst.
The ethical thing to do is to allow people their right to refuse and leave it up to doctors and big pharma (who have marketing budgets larger than the GDP of some countries) to do a better job of convincing parents that vaccines are safe. We can start by reversing the law that grants vaccine manufacturers total immunity from vaccine injury lawsuits. Because as it stands, you can’t sue a vaccine manufacturer if your child is injured or killed by a vaccine, even in cases where they could’ve made a safer vaccine and chose not to or when they failed to recall a contaminated lot# in a timely manner. Think about that. You can’t sue the manufacturer. That immunity from liability does more to shake parents’ confidence in vaccines than anything else out there.
— Magnolia Crawford”
I disagree. A year ago, and I might have agreed. But – I spent a year dealing with Lanae’s cancer and the after effects. A year getting to know other families who are going through similar trials. And they often post their perspective as well, which have given me room for thought – not to change my mind, but simply to adjust my stance.
The kids I’ve gotten to know – they have no immune system. And their parents have stayed with them, through one treatment after another, in a world that has gone chaotically upside down. They find themselves trying to keep up with changing medications and a non-functional immune system. I’ve seen it. Lanae’s gotten sick at least once a month, sometimes more, since we finished treatment. And that’s just a cold – so seeing how easily their kids fall to a basic virus, imagine the parents terror at imagining something more severe, like whooping cough. Anyone who says “it’s not all that bad” (sadly, a common argument with anti-vaxxers) don’t have a child who struggles against a cold. I’ve seen kids end up in the ICU from just the common cold, never mind more serious diseases.
These parents would whole-heartedly agree to an unseen schedule. Without a doubt. And they do. And they are still critical thinkers, and honest, contrary to this person’s statement. But they also see their children in front of them, limping along without an immune system, and it’s heartrending. No critical thinker, no honest person, wants to see that child end up in ICU – to turn around this lady’s quote. But yet, that’s what happens.
And so they agree to vaccines, now and forever. And yes, they get it for themselves. Or if they can’t, they do literally huddle inside their homes, afraid of the germy world outside. And it’s because of a few simple reasons – fear, not the average, every day fear of what could happen, but what (for many) is almost inevitable to happen. They fear for their own children, who can’t get the shots and are susceptible to these viruses that go around. So they trust the word of the doctors that recommend it. And it’s more than a trust that most parents have, of taking their child to an annual checkup or when there’s a basic childhood illness. It’s a day-to-day trust, one they have to rely on, because there’s nothing else. Every day, they get up and put their trust in the hands of the doctors who’ve read the medical textbooks, because this parent doesn’t have the time to sit down and read through all the medical jargon. Their child’s life depends on those doctors, through surgeries, medications, lab draws and blood counts. They have no choice but to trust that the doctors really do know best. And because of this trust, they have to trust that the doctors know what they are doing when they recommend vaccines, no matter how many is added.
Trusting vaccines is not about just “knowing the facts.” It’s knowing them, and then weighing them, evaluating the risks. And when a parent is already expending so much energy just to keep their child alive, they are not going to chance it on something that could so easily come in and take that life.
It’s not just rights to refuse medical procedures. As much as you have the right to refuse a medical procedure for the sake of your child, so these parents also have the right to determine what is best for their own child. Sometimes, that means looking and seeing what can be done as a society. Because in reality, what one side does will inevitably affect the other, either in perception or actuality. And that’s a big responsibility to take on, whichever side you’re on.

Nursemom

Mommy and LanaeThe 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.

DONE with chemo – update!

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.