Let’s Talk About Measles

There is an outbreak in the US. And it’s in California. And, more specifically, measles are in the county I live in. Patients have been treated for measles at the hospital where Jack receives chemotherapy treatment, even.

I’ve been really good about not freaking out, even though I have every right to freak out. I have no explanation for why I am not coming completely unhinged as the news reports more and more measles cases every day.

Both of my kids are in danger. Desmond, at 5 months, is too young for the MMR vaccine and chemotherapy has wiped out Jack’s immune system – including many, if not all, of the immunities he used to have. Jack attends public school and Dez goes to daycare. Jack won’t be able to get the live virus vaccines (MMR & Chickenpox) until a year post-treatment – so, March 2016. Dez will receive his immunizations after his first birthday in September (at least, I think that’s the case – Jack’s health status may delay that!).

Until then, it feels like my kids are sitting ducks.

I know there is a debate right now about keeping unvaccinated (by choice) kids out of schools. I am not convinced we can require everyone to vaccinate, but frankly, I am not arguing against making it mandatory to attend public school – it would certainly make me feel better to know that Jack was that much more protected against a nasty disease that could kill him while going about normal life.

At the same time, I can see the case being made that immuno-suppressed kids be kept out of school, too. I mean, the measles could kill Jack. So why wouldn’t I sequester him?

How can I do that, though? How can I take more away from Jack? He has missed out on so much over the last three years. He has fought so hard to beat cancer and to live as normal a life as possible. He missed half of kindergarten and first grade and so many other days of school, and it has had an impact on his educational performance, as well as his self-esteem. I don’t want to take more away from him!

Further, he’s in danger at places besides school. When I took him to the oncology clinic a couple of weeks ago, we were advised to put a mask on him while in the elevator because there were measles patients being treated at that hospital.

It hadn’t occurred to me that he would be in danger at the oncology office, of all places! And, COME ON! It’s 2015! Measles has no place being on the top 10 list of things I worry about!

In any case, have you ever tried to keep a mask on an 8-year-old? It’s near impossible for longer than 20-30 minutes. And what about a drooling, grabby 5-month-old? That’s just plain crazy-making! (It’s a fun idea for a party game, though.)

So, what I’m saying is…I’m relying pretty heavily on those around me to keep themselves – and us – safe. I’m relying on herd immunity to protect my kids from vaccine-preventable disease because I am powerless at this point.

And, unfortunately, there are many in my community that don’t even think of my kids when they refuse vaccinations. Instead, they think measles is not a big threat to them. They think a vaccine is more dangerous than the disease itself.

All I can think is…is this real life?

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Tips for Caring for a Kid with Cancer

When Jack was diagnosed with Leukemia, I looked for tips on how to prepare our household for the journey ahead. I didn’t find much in the way of practical tips, so I’ve made my own list in the hopes that it can help others. If you have something to add, please feel free to leave your suggestions in the comments!

Items to Make Life a Little Easier

Get a CaringBridge (or similar) website, so that you only have to go to one place to tell all your friends and family what is going on. It will save you a lot of grief!

Stock up on soothing tea to help with nausea and sore throats. We really like Traditional Medicinals ‘Just For Kids’ Throat Coat and Tummy Comfort.

Buy hand sanitizer in bulk and place it strategically around the house, particularly near food items. Also store it in the car, your purse, and the kid’s backpack. Throw in some Clorox wipes, too.

Pills can be administered by using various liquid substances (and you may find yourself trying them all): pudding, yogurt, applesauce, peanut butter, nutella, whipped cream, jello, jam, chocolate syrup. You can also try FlavorX. Crushing the pills into any of these substances or making them into candy is an option, too.

Buy some disposable cups, plates, eating utensils for when you are just too tired to properly sanitize dishes.

A pill organizer is a godsend. I prefer a pill organizer that has slots for multiple times per day. It’s best to organize the pills into the little compartments a week at a time–you can then easily see what refills you might need ahead of time and get the refill request in ahead of time.

Get some books to help your family (especially kids) understand what is going on. Often these books are free from foundations like the ACCO or your social worker can recommend some titles. Some of our favorites are The Famous Hat, Little Tree, and Taking Cancer to School.

Keep two thermometers on hand. That way you can cross-check temperature readings if something looks weird or you’re feeling extra paranoid.

If you are doing dressing changes (with a Broviac catheter, for instance), order adhesive remover to make it easier. (Some hospitals may provide this; ours did not.)

An adjustable, compartmentalized organizer box is fantastic for keeping medical supplies such as Heparin, specimen tubes, and dressing supplies in.

Practical Advice for Caregivers

Don’t argue or joke with a kid on steroids–it’s just not worth the drama.

Buy foods that have individually packaged servings to avoid throwing away leftovers. When you have an immune-supressed child, you won’t want to feed him/her anything that is even remotely questionable.

Keep a variety of foods in the house–you never know what the chemo-affected appetite will call for. The kid may suddenly become sensitive to sweet stuff and prefer salty stuff, for instance.

Teach the kid how to let his friends know about being careful around any dangling medical apparati. We let everyone who plays with Jack SEE his Broviac catheter so that they don’t forget it’s there and accidentally pull at it.

Attend events for families dealing with cancer. The support is amazing, and you can gain so much perspective from others’ experiences.

Stock up on cozy things, such as soft clothing, pajamas, lovies, and blankets. When a body aches or a child needs comfort, soft things are the BEST. Jack’s favorite pajamas are long-sleeved flannel and button up the chest; this way he can be warm and cozy while he’s getting a dressing change for his chest catheter.

Embrace convenience–meal delivery services, drive-thrus, prepackaged meals, protein shakes.

Assign a friend to screen medical information in books or on the internet. They can then relay the important information to you MINUS the horror stories.

Avoid and Relieve Burnout

  • Get out of the house/hospital/etc. Don’t worry about what people might say/think/etc about it! Take any kind of relief you can get during this super stressful time. This can mean a vacation, a stiff drink, physical activity; what relieves you may vary from what relieves someone else.
  • Don’t be afraid to ask for and accept help. You need it–otherwise you WILL get burned out. Cancer is a long journey.
  • Help includes financial: Accept money offered. If you don’t end up needing it, you can give it back later. There are ALWAYS surprise expenses that insurance or foundations won’t cover.
  • Take a nap. It’s easier to handle things if you’ve had rest.
  • Consider getting a prescription sleep aid and an anti-anxiety medication for yourself before problems arise. It’s likely that your sleep will be interrupted at some point, and panic attacks often hit at the least convenient times.

You can’t be too cautious or careful. If you feel like you need to take your kid in to see the doctor, DO IT. Better safe than sorry!

Remember: Hang in there and take it one hour, minute, second at a time. Somehow, you’ll get through this.

Tips on staying sane and making life a little easier while caring for a child with cancer.

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