Survival Tip #2: The Internet is Your Best Friend, and Worst Enemy

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When your child is diagnosed with a serious medical condition, almost all doctors will immediately tell you “Whatever you do, DON’T go home and Google this disease!” Um, yeah right. Isn’t that like telling a 3 year old not to touch something fragile? (Besides, if you hadn’t done exactly that, how would you have found me?) I have always been one of those people who wants to know EVERYTHING. I cannot just accept that everything the nice doctor is telling me is accurate, applicable to my situation, and in my child’s best interest. Case in point:

When Pumpkin was diagnosed with leukemia, we were so lost. We had never had to deal with anything like this before, and had no idea what to do about it. Pumpkin was seen by his pediatrician Friday afternoon, and by the time I had gathered Princess and Peanut from daycare, packed an overnight bag for us all, and made arrangements for my husband to meet me at the hospital an hour away from our house, it was too late for a biopsy to be done – apparantly the main hospital lab closed at 4:00 on Friday and wouldn’t reopen until Monday morning. Originally I saw this as a disaster, but over the course of the evening, and the weekend to follow, I came to see it as a blessing. We met the pediatric hematologist-oncologist Firday night. She was friendly, but pushy. She told us several times that we should have made it in to the hospital sooner (our pediatrician had said we had plenty of time to stop and do the things we needed to on the way), and that if we hadn’t made it in when we did to give him a blood transfusion he would have died. She took a slide of his blood and examined it, then came back and told us that even without the biopsy she had seen hundreds of cases like his, and she was absolutely confident that he had leukemia and that we needed to start treatment immediately after the biopsy. We were shocked, blind-sided with all of this information, and so confused. She never really bothered to explain to us what was wrong with him, how it would effect him, what the hospital offered by way of services, what kind of treatment he would need or how long he would need, or really much of anything. We spent that weekend searching the internet for answers, talking to family, and trying to decide what to do. In our research we kept coming back to St. Jude’s in Memphis. We lived near Tulsa at the time, so it was about an 8 hour drive from us. We had insurance, good insurance, but it only covered some of his expenses, not all. The hospital was in Tulsa, which was about an hour from our home, but we had no idea how long we would have to be in the hospital, if someone would have to stay with him all the time, what we would do with our other children while we were at the hospital, or how we would work out the logistics of work on top of it all – my husband worked out of state, only coming home on the weekends, and I had a full time job in Tulsa, but our daycare was in our hometown so I would have had to drive to work, drive back to pick up the kids, then drive back to Tulsa to be with our son in the evenings, provided I was able to work at all. St. Jude’s offered to pay all of our medical expenses not covered by insurance, they provided housing for us, they provided food and basic necessities, and even though it was far from home, logistically, it was easier for us all to be together out of state than to try to work around our various schedules and such in Tulsa. We told the doctor we wanted our information sent to St. Jude’s. Initially she refused, saying that there was no way they would accept us. St. Jude’s is a research hospital, and they only take children who are elligible for a study protocol in progress. She actually told us that “everything there is to be known about leukemia has already been found, so there’s no way they will be running a study that Pumpkin would be elligible for” and therefore, it was a waste of her time to even fax over the paperwork. We pressed, and eventually she relented, but only to prove us wrong. Imagine her surprise when Pumpkin was accepted. We told her thank you very much for your time, but we’re going there. She told us that delaying his treatment even by the 8 hours it would take us to make the drive amounted to criminal child abuse, and that if he died on the way, it was on our heads. She actually was on the phone with child protective services as we walked out of the hospital with our son. Knowing the outcome, I still don’t think I would have stayed in Tulsa.

Doctors are amazing people. Most become doctors because they want to help people. Some have amazing bed-side manners, and some do not. There will always be doctors you don’t like (trust me on this one), and there will be some really great ones too. But the one thing doctors are not is infallable. Despite what they sometimes think, they don’t know it all, and rarely are they looking at the perspective of the PARENT rather than the perspective of the healer. And this is where the internet comes into play.

Doctors will throw a lot of information at you at once, information you will probably be too numb to actually hear. You may take some notes, but you will think of a thousand questions you should have asked the minute you walk out the door. Some doctors are very accessible, but most are not. Not because they are ignoring you, but because they have many other children to care for besides yours. The time that they spend explaining things to you is time they are taking away from treating their patients. Having access to reputable websites (the Mayo Clinic, Johns Hopkins, etc.) to research your child’s particular disease, to be able to take the time to slowly process what exactly is happening with your child’s body, and what can be done to treat it, is invaluable.

The internet is also a great repository for personal stories. This is where the gray area comes in to play. Hearing from other parents who have gone through similar experiences is a huge blessing, and usually a huge relief. Just knowing someone else knows how you are feeling is an awesome thing, it gives you strength when you feel like you have none of your own. There are lots of support groups out there run by various outreach and support organizations. These are also a great resource. The number one thing you must remember above all else though, is NO ONE’S STORY IS EXACTLY LIKE YOURS.

There are horror stories galore of children who have died, or been horribly disfigured or otherwise harmed by the treatments that your child will have to undergo. There are stories of miracles, children who were not expected to live that suddenly went into a medically unexplainable remission, and have never been sick again. There are claims of miracle cures, whether they be experimental drugs or treatments, herbal rememdies, faith healings, and so on. But the simple fact is nothing is concrete. No one will ever be in EXACTLY the same situation as you, because every person is unique. Just like some people respond better to Tylenol than ibuprofen, some people respond better to some treatments than others. While the blogs, articles, and websites about other similar situations can give you hope, give you ideas for treatments for your child, they should never ever be used as the absolute last word for your child. EVER. EVER EVER. Information is a good thing. Being able to sit down with your child’s doctor and discuss alternative treatments is a great thing. But when you bring up an alternative treatment to your doctor, also be prepared to LISTEN. Ask your doctor why they are using the approach they are, and why the approach you have found would or would not be appropriate for your child. If your doctor is unfamiliar with the information you have found, provide them with the website, and any additional supporting documentation you have found for any approach you would like to use. Be able to rationally discuss any alternative approach, and be open to your doctor’s reasoning for not using it. Doctors are not perfect, but no matter how terrible their bedside manner may be, their primary concern is for the safety and well-being of your child.

The absolute best thing about the internet is the ability to find other people who understand what you are going through. As long as you always keep in mind that their story is not yours, having someone else who understands the feelings you have, who understands the medical terminolgy you are throwing out, is a beautiful thing. I have found several amazing bloggers, people I count among my friends, in this way. Our case is slightly unusal – we have several children with a wide range of medical issues. We are not able to concentrate specifically on one issue, so I have found a “buddy” for each of my children’s issues. While I can talk about my daughter’s heart condition with my fellow cancer mom, I get the best support for her issues from my fellow heart mom. I get tons of great information about the autism spectrum from a fantastic blog, information that my asthma support group doesn’t have because it’s not their specialty. Reach out to those who have similar situations, and you will be amazed at the amount of support they can give you.

The bottom line – the internet is a great tool, but it’s not the ultimate authority. Use it for research, use it for support, but don’t ever forget that what you find may or may not apply to you and your child.

Survival Tip #1: Medical Terminology

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There have been many times over the course of the last 6 years that I have really wished I had gone to med school. In high school, I had made plans to go to med school, up until my junior year when I decided 1, it was too much work, and 2, I didn’t really want to deal with all that… sick. I did have a brief career as a Certified Nurse Aide, working in nursing homes, a mental hospital, and an emergency room. My certification was good for 3 years, by the end of 1, I was done with it. Ha! Life has a funny way of throwing curve balls at you, doesn’t it. Surprisingly, being a CNA actually doesn’t give you all that much instruction in medical terminology, other than giving you fancy ways of saying pee, poop, and change that diaper. Oh, and something or other about blood pressure and range of motion. In other words, it’s a great introduction to being a mom, but other than that, not really all that informative. As a way to pass the time, I often read patient charts. I like puzzles, I like figuring out why things are the way they are, the cause and effect that leads up to this moment. Patient charts make for fascinating reading, especially at the mental hospital. In those charts there are a lot of words, phrases and abbreviations that did not make a lot of sense to me, so I started asking questions of anyone and everyone who would listen.

As a result, the first time I had to deal with a serious medical condition with on of my children, while my medical terminology skills were rusty, it didn’t take me long to catch back up to “nursing slang.” In my free time, I researched as much as possible, not just layman’s term definitions of my children’s conditions, but also medical journals, and anything I didn’t understand, I researched as well until I did. Yes it took a lot of time. Yes it was frustrating. Yes there was a lot of times I thought my head would explode from all the information I was cramming in to it. But when your children are sick, there’s not a lot you can do for them. You feel helpless, redundant, and completely out of your league when the doctors, nurses, and other experts come in and start throwing a bunch of information at you – information that most people have never even come close to understanding before. By doing the research I did, it gave me something to do instead of sit and feel helpless, it gave me information I didn’t have, information I could use to actually discuss my child’s condition with their provider, not just be told what they wanted to do with my child. And it also gave me a better understanding of the day to day workings of my child’s body. When my son was going through chemo, he had lab work done every day. Because I was the one with my son every day, all day, I was able to spot trends that the doctors who only saw him once a day and the nurses who saw him 4 or 5 times a day would miss – things like when a certain number was high, his mood would be just terrible – cranky, irritable, and unreasonable all day. It only happened on the days THAT number was high. Come to find out, that number is a chemical that effects moods. When you understand what all those numbers on the lab reports mean, you know what to look for in your child, and you are better able to articulate to your child’s providers what your child’s needs are.

The other benefit to having at least some knowledge of medical terminology was recently brought home to me when my dad was in the hospital. My step mother had been spending most of every day with him at the hospital, but when he took a sudden turn for the worse, the hospital started calling me to make decisions (I am his medical power of attorney). When I would call in the afternoons to check on him, I would start with “So, how’s he doing today?” and the nurses who had met my step mother but not me would just say, “Well, he’s not any better, but he’s not any worse, he’s pretty much holding in there. He’s got a little better color today, but you know that anything could happen at any time.” When I would then ask “What was his blood pressure readings and this time and this time, what was his creatinine levels, what was his temperature, how much insulin was he given, what’s the status on getting an NG tube placed” and so on, their attitude would instantly change. It’s not that they were unfriendly or unwilling to give information before, it’s just that when dealing with someone who has absolutely no knowledge of medical procedures and no ability to GAIN that information, it’s very difficult to give any other information than a very vague answer without a dramatic shift in patient condition. A working knowledge of medical terminology can give you insight into more subtle changes, and really, when it’s your child that’s sick, don’t you want to know everything you possibly can?  In my dad’s case, he had serious kidney problems and we knew he would not want to go on dialysis, but if his kidney function dropped below a certain point we wouldn’t have a choice. So we had to watch those numbers very carefully, and even the slightest change in either direction was a big deal for me because I knew how much weight that number carried.

The bottom line, when dealing with your child’s illness, you are preparing yourself for war. Arm yourself with every tool you can because knowledge is NEVER unnecessary or wasted.