Monday, November 6, 2017

Meal Planning is going to Drive Me Crazy!

Disclaimer: I received a product for free in exchange for this review.

Years and years ago, we were on a budget so tight we couldn't have squeezed a penny out of it. Because we were that broke, I learned how to meal plan. Often, we would eat low cost protein like cheese or eggs with a small serving of meat. As the kids grew, we supplemented many meals with pasta or home made bread.

But then, the shit hit the fan.

And that caused our food choices to change, big time.

With N.'s gut issues, her doctor suggested a gluten free diet. For A. and R., a diet with no added sugar is best. Larry is now eating heart healthy, and I do low carb, as advised by my doctor.

In short, trying to plan meals that work for everyone is sometimes an exercise in futility.

Over the last several weeks, I have been putting together a spread sheet and meal plan guide that would help me plan suitable meals and sides for every meal, for every person, throughout the week. The theory was that if I could write everything down, then shopping and meal prep would be much less of a jumble.

And it worked, for the most part.

First, I created Pinterest Boards. I have one for Gluten-Free lunches, one for Keto lunches for me, one for lower carb, kid friendly lunches (and also one for high protein breakfasts) for the younger kids, and a healthy lunches board for Larry. Over the weekend, I have everyone head over to their board and pick out what they would like for lunch.

That works really well for us, except that, initially, we had to spend a good bit to get some meals stockpiled in the freezer. The rule is that each person can choose one new meal, but has to choose their other meals from what's in the freezer for them, or they can make themselves a sandwich for lunch that day, or they can choose to eat any leftovers.

They also have to help cook what they pick. This helps them to understand the huge amount of work that goes into meal planning, especially for a family with our issues around meal planning. When you have kids on special diets, you can't just grab the sales ad and pick up what's on sale, although that worked really well for us in the past!

For lunches, the kids pick their sides (I have stuff available like peanut butter crackers, cottage cheese, goldfish crackers, etc.), some fruit, and a juice. When I'm feeling really adventurous, we put this all together on the weekends, but usually, I'm shoving apples into lunch boxes at 7:22 in the morning as they kids are standing there with their outstretched hands.

I've tried to help the kids choose lunch boxes that fit their personalities. This has been a struggle for this lunch box from Aafly. It's colorful, but in an understated way.
N. She's far too grown up for a kids' lunch box, no matter how much she loves Transformers and Star Wars. But at the same time, she likes having a lunch box with a little personality. That's why I love

I'm also really happy with the inside. It's lined so that it keeps everything cold. It's really frustrating to send lunches to school and not be sure that the lunch meat or apple slices haven't shriveled up and died because the lunch box sat on a counter in a warm classroom. There's plenty of room for a thermos, and any snacks that need to be kept in there. N. is a bit of a grazer, so we can pack it full of stuff for her to munch on all day.

The lunch bag is big enough to fit everything she needs, but folds up flat, so she can fit it securely into her backpack after lunch. In my house, any day that someone's lunch box isn't left behind at school is a good day. We often use these disposable food containers because with my son's memory problems, it's not unusual for us to realize that all four of his lunch boxes are at school. We usually find them in the bottom of his locker. The disposable food containers help us make sure that no science projects are brewing in there-or that clean up is easier if they are.

While the food planning plan does help to keep me organized, it's not fool-proof. The first weekend I Instant Pot helped a lot with that, but it still took forever. Because we had to plan for several meals initially, we had to spend quite a bit of money to get things up in running. Next year I will start planning in early August, so that I will have time to build up some freezer stock prior to school starting.
tried to use it, it took me hours just to plan, not to mention all of the cooking. My

We also had to buy some other supplies to make this feasible. For my husband I bought this thermos. My kids have these. I bought some Pyrex dishes to freeze entree portions in, but I would need dozens to build up a good stock. Plus I forget to take them out of the freezer and move them into other containers after they freeze. Instead I bought these mini loaf pans.

All in all, organizing our meals is helping a lot. But it will take time before the system doesn't totally drive me crazy. In the meantime, I'll be doing next week's meal planning with a glass of wine.

Friday, November 3, 2017

It's My Party, and I'll Cry if I Want To

Two years ago today, I was looking forward to my birthday.

I was born seven days after Halloween. It's kind of disappointing to me. Come on, Mom; you couldn't have done some jumping jacks or had some sex so I could at least be a Halloween baby? That would have been so cool!

No. I'm a November baby, destined to have that ugly topaz as my birthstone.

Thanks a lot, Mom.

But I digress...

You know how you get on the far side of something bad, and think, "Wow, I'm a different person today"?

I was talking to my BFF Lisa the other night. She's doing some writing about her life, and was asking me about some of the events in my life, so she could check her own timeline.

She mentioned that my dad died just five months after her mom died. She hadn't realized the depth of how much she hadn't been there for me when he died.

But honestly, I'm not sure it would have mattered.

It's weird how memories work. Every year, I have a hard time remembering the date. It's like I block it out in my mind. But I remember every minute of the twenty or so minutes before I was told about his death. We were eating dinner. Larry's phone rang, he talked for a few minutes, and went back to eating. I'm pretty sure that I finished eating, and picked up R. so that I could nurse him. When I was done, Larry motioned for me to come with him.

I remember walking into the bedroom.

I don't remember the words he said, but they all added up to "Your dad has died."

I remember feeling like I couldn't breathe. Like there was no air left in the universe.

Like my heart was literally broken.

It was weird, you know. I had experienced the physical pain of childbirth four times. My boys were huge. I've broken all of my toes, several of my fingers, and a foot. I fell off an airborne bicycle. I've skidded through intersections on my shins on obviously not airborne bicycles. But this? The physical pain was worse than anything I had ever known.

Some time later (minutes? hours? maybe even days?) when I could think straight, I realized that my mom had called him, than he had finished eating dinner, and then told me.

Y'all, I was mad.

I mean straight up ready to shank a bitch mad. He waited. He took his own comfort first. She couldn't even talk to me. She knew what the depth of my anguish could be and she chose to bail like a butterfly escaping a Mason jar.

I was pissed. Those raw wounds, so freshly gouged, hurt just a little bit more because I felt betrayed by the two people who should have been the ones to be there to support me, to love on me, to hold me when I was fighting to catch my breath because the sobs just would not stop.

And I swallowed it.

At first, I swallowed my rage for the reason all parents, at some point in their parenting lives, have to swallow their feelings. I had to tell my kids that their grandpa was dead.

And I did it. A first, because she was closest to him. I knew she would need some special attention. I knew the depth of her despair. Then N and S together, because they didn't have as much of a bond with him. They cried, and were sad, but not to the furious level of A's emotion.

Then I cried some more.

Those days are all blurry. I know we had to borrow money to go to the funeral, but I don't remember the trip home. I remember sitting in the recliner at my mom's house nursing Roan. I remember being asked to speak at his funeral, and being beyond the point of forming words. I remember holding my brother's hand as I walked him to his seat, because he, too, was desolate. I remember looking back at the crowd and realizing that my dad had brought a standing-room only crowd to mourn his loss.

I do know that I was mad at every one, and every thing. So I'm not sure that Lisa would have been much help even if she hadn't have been mired in her own deep despair. I remember talking to my aunt, my grandfather, and another close friend, but I don't remember any of the words they said. They may have imparted some deep wisdom on those days, but I couldn't tell you what a bit of it was. I was so lost, I wasn't able, or ready, to be found. And I don't know that even Lisa could have helped with that.

My dad was quick at everything. Quick to laugh, or to make you laugh, quick to hate, and quick to love. He loved me through the roughest times in my life, and taught me how to be the bigger person
even when a tiny demon spawn blames you for every thing that has ever gone wrong in her life. He loved quietly and he loved with gas money and air in my tires. He loved with laughter and Taco Bell runs because his cooking was atrocious. He loved furiously and sometimes got angry that way too. But he forgave me every sin I ever committed. He held me to a higher standard and pushed me out of the nest I had been tied to by my mother. He drew the line and broke the rules and showed me the how and why of both.

And even now, twelve years later, I'm crying as I write.

Larry's forgiveness came on a long cold night, when I was up late writing, several years after my dad died. I just suddenly realized that he hadn't waited to tell me because he was a coward. He finished eating because he knew that once he had told me, I would be unable to do anything for the rest of the night. If he was to be able to take care of our four week old infant and get the other kids to  bed and help comfort bruised and broken hearts, he needed to be able to finish dinner because he wouldn't get another chance. In taking his own comfort, he was thinking only of mine. Of my need to grieve the man who may not have given me his DNA, but had been my father in every way that mattered, in my way.

In talking to Lisa the other night, I think I finally realized why I was so completely pissed off when my mom died.

It wasn't that she gave up, even though she did.

It was because I never got to tell her how utterly pissed off I was that she had told Larry instead of me. That she couldn't accept the burden of my grief. That she knew it would be bright, shining, as intense as the rays of the sun after a week of cloudy days, and that she chose instead to not deal with it.

Forgiveness was not something that I had been able to grant my mother. I may not ever.

My dad has been around a lot this week.

The other night, a song he loved was on a show we were watching.

S asked about him.

The conversation with my BFF.

A rude comment I made while watching Ice Road Truckers that came straight out of dad's mouth.

I'm not quite sure what he's trying to tell me, but I'm listening.

But also crying. My birthday also brings that anniversary of my dad's death, just a few days later.

It's my party. But I might be crying.

Thursday, October 26, 2017

Finding Distraction: What I'm Reading in October

In Colorado, fall means less evenings spent outside. It's snowing tonight, so we're definitely in the house! It gives me the chance to fold some laundry, clean up the kitchen, and get some reading done.

Okay, who are we kidding?

I'm reading. The laundry can wait. The dishes are done, sure, but everything else can sit until tomorrow.

Here's what I've been reading this month:

#momlifeinc by Leah Cupps. I picked this up from http://momlifeinc.com/ hoping for some business inspiration.

Savage Embers by Cassie Edwards. I went a little old school with some nineties era romance.

Asperger Syndrome and Adolescence by Teresa Bolick. Found it at a used book store, and decided to give it a try.

What's on your list this month?

Wednesday, October 25, 2017

The Challenges of Oral Chemo for Children

Disclosure: I received the Genevieve Avani water bottle for free in exchange for a review on my blog.

My 10 year old daughter takes an oral dosage of chemotherapy every day.

It sucks.

While the goal of chemotherapy is to kill of cancer cells (or, in her case, to destroy her extra platelets), there's no denying that every night I have to give my daughter a pill that's so dangerous I'm not supposed to touch it with my bare hands.

When A. was diagnosed with Essential Thrombocythemia, her platelets were almost one million. A healthy adult has between 150,000 and 350,000 platelets on any given day. If you're fighting off an infection or recovering from something like surgery, your platelet numbers can surge to about 450,000. So at diagnosis, A.  had enough platelets for two grown people.

She was put on daily aspirin therapy, but her platelets continued to rise. She was being treated by a hematological oncologist at Rocky Mountain Hospital for Children, but that doctor had never treated a patient with ET. By the time we found a doctor experienced in pediatric ET, her platelets were 1.5 million. Shortly after we changed doctors, A. was diagnosed with Acquired Von Willebrand Syndrome (caused by the ET). AVWS causes a malfunction in the clotting factors in her blood. She was immediately put on Hydroxyurea.

While the Hydroxyurea has reduced her platelet count (she had a normal platelet count for the first time in over a year, in August 2017), and her symptoms of AVWS, it's hard to give her that pill every night.

One of the things that helps the Hydroxyurea do it's job is water. A lot of water. A. carries a water bottle with her everywhere. Our tap water has a high mineral content, so we buy bottled water. That, of course, raises it's own concerns. I wanted a BPA free water bottle for her so that we would be
minimizing the effects of water sitting in a BPA lined container all day. When I was given the opportunity to review the Genevieve Avani BPA free water bottle, I jumped at the chance.

We received our bottle just over a week ago, and it has been A.'s constant companion. It's made the journey back and forth to school, and we took it with us when we ran errands over the weekend. It's performance is exactly what I had hoped for. It came with a stainless steel straw brush, so it's easy to clean out, even when she put apple juice inside. In fact, A. enjoys cleaning with it just to play with the brush.

We haven't had any issues with the water bottle. Sometimes, when she tilts it completely upside down, a few drops spill out. But it's not meant to be used that way, so I don't see that as an issue!

You can check out the water bottle for yourself at this link!

Thursday, October 12, 2017

Why Is It So Hard to Get Treatment for Mental Health?

I don't remember a time in my life when mental illness wasn't a factor.

I distinctly remember, as a little girl, my grandfather coming to our house and confiding in me that he was a special agent for the government. Or that he hadn't been to see me in months because he was being followed by bad guys. It wasn't until later that I heard more stories, from other family members, about the elaborate worlds he constructed, the stories he told, the jump from family man to panicked man on the run that could happen in an instant. My memory of him, tarnished by his alcohol abuse, made sense when I realized that he may have been using alcohol to self-medicate. As the oldest son of a proud Southern family who could accept a little eccentricity in the elders, but couldn't imagine a man being broken by a mental illness or PTSD from his time in the military, it must have been difficult to get help.

My dad and I had long suspected that my mom was bi-polar. On more than one occasion, we talked
about starting the process to have her involuntarily committed, but we felt she never quite fit the criteria. Even when she pointed a gun at him and threatened to shoot him because he wanted to clean one of her hoarded storage sheds. Even when she destroyed our things in an effort to hurt us. When she screamed at us for hours, accusing us of trying to 'gaslight' her, of spreading rumors about her, of deliberately trying to make people see her in a bad light.

After the birth of my daughter, my mother attempted to disown me several times. Whether this was emotional abuse or mental illness, we will probably never know. My mother was horrified at the inconvenience that I, by giving birth at the age of 19, caused her. The stigma. The scandal. What would the neighbors say, anyway?

My dad and I knew that even if we had managed to have her committed, my mother wouldn't continue on medication. She never thought there was anything wrong with the way she behaved. Again, I think a large part of this was due to the stigma that having a mental illness creates. It's acceptable, maybe even funny, when Grandpa forgets the neighbor's name or leaves his dentures sitting on the coffee table because he's 90. It's a dirty secret when someone in your family is so depressed their children have to go live with grandparents because mama can't get out of bed to make dinner.

When I was older, anxiety began creeping into my own life. As a smoker, it took me a long time to recognize it for what it was, because nicotine can hide the symptoms of anxiety. Someone more scientific than I am will tell you that it's because nicotine does something to the serotonin production in your brain, acting much like SSRI's, used to treat anxiety, depression, and other mental health disorders. When I quit smoking, my anxiety became unmanageable without help. It took me years to get back to anything remotely close to the person I had been before; relatively fearless, ready to take on any challengers, grabbing life and making it my bitch.

Today, my formal diagnoses include Neurosis, Anxiety, Depression, Post Traumatic Stress Disorder, and Obsessive-Compulsive Disorder.

A few years ago, my middle daughter was diagnosed with anxiety. While her doctor wanted to try some natural therapies and ran some tests to see if her liver could be to blame, she was started on a small dose of valium. For a while, this helped her sleep and often alleviates her anxiety on an as-needed basis.

I was bewildered by her symptoms. She came to me one night when she was fourteen, in a panic about paying for college. The star pupil in elementary school, high school had become a struggle for her, as it does for many kids as the work gets harder. She was suddenly obsessed with the fear of failure; so much so that some days she didn't want to go to school.

Things came to a head for her when she became so ill that she required emergency surgery. All in all, she missed about a month of school. She was so behind that there wasn't enough time to catch up, and not all of her teachers were sympathetic. One required her to copy notes from the days she had missed from a friend and then marked her down when those notes weren't verbatim. We had to fight to have allowances made given the timing of what she missed.

For my daughter, these were arguably some of the roughest years of her life.

For me, as her mother, most of this didn't make sense. Growing up, Nick had seemed like a pretty typical kid. She didn't sleep much and had dental issues, but by and large, I had hope that she would have a life without mental illness. But her early teen years were rough. Nick wasn't comfortable in her own skin. I wasn't surprised when she came out to me as gay. We saw the first signs of Nick's anxiety when she was 13, but I hoped that it would go away, because, dammit, isn't 13 hard for everyone?

But as Nick grew older, her anxiety increased. Seeing her brother have his first tonic-clonic seizure probably didn't help. I'm sure that hearing her sister's cancer diagnosis added another level of weight to her anxiety.

Nick finally started therapy. I'm hopeful that learning some coping techniques and strategies will help her be better in the face of her anxiety. But this isn't an easy road for her. Her therapist isn't attached to a clinic that offers medication management, and her therapist and I no longer feel that the valium is effective for her. We've had to get her into another mental health clinic where we've set up Split Care, and will have to go through several visits there before we get to see a doctor. It's going to take months to have her evaluated by a mental health specialist who can prescribe the right medication for her.

I read this article today about how we're seeing more anxiety among teens. Part of the article talks about how one patient, in particular, was hospitalized several times and was on different medications before finally seeing progress. I'm wondering why it's so hard to get our kids mental health care. Why is there such a stigma attached to the process? Why do so many medical professionals wait until our children are on the verge of suicide before we take them seriously?


Wednesday, July 12, 2017

Medication is Risk vs. Reward

At some point many special needs parents have to make the decision about whether or not to medicate their child for their condition.

This is never an easy decision.

I mean, there'a s lot of shit to take into consideration. Immediate side effects. Long term side effects (Thalidomide was a wonder drug for women suffering extreme morning sickness, until the babies started being born with phocomelia). Stigma. Costs (at one point, the cash cost of R's meds was $1000 per month). Other treatment options.

Recently, someone in an epilepsy parent support group on Facebook asked about the choice to medicate (or not). This is my answer:

Medication is risk vs. reward. 

Medication has been a positive experience for us. We went from hundreds of seizures per day to 2-3 per day now. Before we found a better med combination, he would be so disoriented after an absence seizure that he once almost walked into traffic. But our meds aren't perfect. They don't give us 100% control, and his current side effects include a tiny appetite (but better than the tremor and hair loss he experienced from previous meds). But it's better than him never being able to be more than a few feet from someone else because of worry that he would get hurt as a result of the disorientation. It's better
than us trying to find a way to make pool noodles stick to the corners of the walls because he would often run into them just walking to the bathroom. It's better than him missing 40-90% of what his teachers were saying. It's better than him starting the same sentence ten times because he's clustering so quickly he doesn't realize he's already said those words. It's better than him spending hours on my lap or laying with me on the couch because his brain is rebooting every 6-10 minutes from a seizure and it's scary to him to lose time like that. Today he's sitting in the living room while I'm in my bedroom, watching a show he loves on Netflix, after doing some typing exercises for Occupational Therapy, and his chores, which include putting away dishes. He'll make his own lunch soon (he's 11), which he couldn't do for awhile because he would forget what he was doing (the microwave died when he forgot to put his food in it before turning it on). After lunch, we'll do some reading/recall, again for Occupational Therapy, and if it cools off enough we'll go outside and play (which we still have to do together because he does still have some seizures and we don't have a fenced yard). He may need services for the rest of his life, but what we have today is 1000 times better than what we had a year ago, and that wouldn't be possible without meds.

I can promise you that I am most definitely a hippie mama. My house is fully stocked with medicinal teas, herbs, and essential oils. Just like you, I want the best for my children. When that means caring for a cold or muscle sprain, I most definitely go for the crunchy methods. But epilepsy? I'm not willing to risk the long term effects that could happen by playing with herbal remedies for that. No. 

There is a time and a place for crunchy cures, and there's a time and a place for medications. You'll have to make that decision for yourself. But for us, it was a no-brainer.

Friday, March 31, 2017

What is Essential Thrombocythemia (Essential Thrombocytosis)

I've mentioned a few times that my daughter suffers from Essential Thrombocythemia, also known was Essential Thrombocytosis. Every time I say or write those words, people look at me as if I'm speaking a foreign language. Even my spell check doesn't recognize either of those words.

The short version is that Essential Thrombocythemia, or Essential Thrombocytosis, is a condition in which your bone marrow produces too many platelets. Platelets are the components of your blood that make your blood clot when you cut yourself. They're the reason we don't bleed to death when we do something stupid like hold the bagel wrong while we're slicing it, or cut off the tip of our finger
Blood cells
when we're using a meat slicer. Clots are good!

However, clots can also be bad. Clots are what cause strokes, because blood clots form inside of veins and cut off oxygen to the brain. Clots can cause pulmonary embolus or can lodge in the heart or lungs.

My daughter, forever known here as A2 (because she's the second child with the first initial of "A") was given a diagnosis Essential Thrombocythemia when she was nine. We suspect she may have had it for longer. Here's her story:

A2 started having headaches that I thought were migraines when she was six. We have a family history of pediatric-onset migraines, so it really didn't strike me as strange, although there's no doubt that it sucked. We took her to the doctor, and we had an eye exam that showed no problems. Doc suggested that dehydration was probably contributing, and we moved on. They eased quite a bit once we started making sure that A2 got plenty of water every day.

When she was eight, they came back with a vengeance. We again took her to see a doctor who said she was probably deficient in magnesium. On her orders, we started treating her with a daily magnesium supplement and giving her Milk of Magnesia when she got a headache. While the MoM helped her headaches, the magnesium supplement did little to change the amount of headaches. We went back to the doctor and she suggested more magnesium and a B vitamin. By this time, I was a little pissed that we hadn't been referred to a neurologist and she hasn't done blood work; in short, she was guessing about the magnesium deficiency. Some weeks, A2 was having three headaches a week. We decided it was time to switch pediatricians.

While we were waiting for our new patient appointment, she got a headache so bad that we took her to the ER. The ER doc suggest caffeine in the mornings and daily ibuprofen until we could get in to see a neurologist. He put in a call to our new pediatrician, and was able to expedite our appointment. Our new pediatrician immediately ordered an MRI, did a blood draw, and gave us a referral to a neurologist. He called the next day and told us to stop the magnesium and B vitamin. Her levels of mag were high, and her levels of B were stable. His nurse called a few days later and told us that her platelet levels were high, and that they were referring us to another doctor. She gave me the number and told me to call to set up an appointment.

I was a little nervous. The nurse, who I've known since she was in junior high school, wanted us to be sure to call the new doc today. Said it was urgent that we get her seen as soon as possible, even though it meant driving over four hours to the specialist. I called the doctor's office and they answered the phone "Rocky Mountain Pediatric Hematology/Oncology Clinic." I almost dropped the phone. I scheduled the appointment. I remember thinking that my voice sounded funny. I debated calling my husband, and then decided that this was "in person" news, not phone news.

I can tell you, I've had some moments as a parent when I've been knocked for a loop. My oldest kid routinely ended up in the ER because she inherited my inherent gracefulness and managed to fall down or bump her head hard enough to knock herself out or some other goofiness several times during her late teen years. Seeing her in an ambulance was scary. Seeing my son having a convulsive seizure in my hallway was scary. But those are fear in the moment kind of things. You're scared and then things calm down and the fear eases somewhat.

But knowing that your child has an appointment with an oncologist? That shit doesn't ease. It sits there, marinating in the dark recesses of your brain, where every single ugly, negative scenario that you can imagine plays out in high definition slow motion agony. I called my BFF and confided in her, then tried to get my shit together to go pick up the kids from school. Once, when I was in high school, a cute boy said hi to me and I felt all of my marbles fall out of my brain. I couldn't think of a single reply. I just stood there, smiling, trying to remember what I was supposed to say to reply to him. Now, as an adult, I spent much of the afternoon of that phone call trying to find my marbles, but every time I found a few, they would scatter all over again.

I didn't actually recover all of my marbles until a few days later. I had to wait to tell my husband, because I wasn't yet emotionally able to offer the support I knew he would need. I barely had all of *my* marbles together; there was no way I could help him pick up his when they fell.

Essential thrombocythemia is generally diagnosed through elimination. First, we had to have another blood draw at the oncologists office. Often, high platelets are caused by something going on inside the body. This is known as reactive thrombocythemia or reactive thrombocytosis. Our doctor noticed that A2 had a low ferretin level, which both could cause the high platelets, and could cause her headaches. She immediately put us on an iron supplement, and scheduled us for another blood draw (we did most of our follow up blood draws locally, thank goodness).

In the meantime, she had an MRI, which came back clear. When we saw the neurologist, we gave him the CD of the MRI, and he said that she was young for pediatric onset migraines, but that it wasn't unheard of. He prescribed Maxalt and anti-nausea med, and told me to call him if anything changed. He told us we could stop the caffeine and the ibuprofen, but the oncologist had told us to keep taking the ibuprofen, because it makes platelets less sticky, so they are less likely to form a clot.

This continued on for several months. A2's platelet levels continued to climb. After four months, our doctor had us come back up to Denver where she did another exam and then did a blood draw for a genetic test. If A2 had indeed had reactive thrombocythemia, her platelet level should have returned to normal either with time, or with the iron supplement. Instead, her platelets had continued to go up. She told us it would take six weeks for the tests to come back. It took almost eight.

Finally, we had our diagnosis. Essential thrombocytosis, positive for JAK2 mutation. Our oncologist switched A2 from ibuprofen to aspirin, because aspirin does a better job of preventing clots than ibuprofen. Of course, we were hesitant about that choice, because aspirin causes Reye's Syndrome. So not only did I need to read about her new diagnosis, I needed to read about this as a possibility. Most people diagnosed with Essential Thrombocytosis are over 50; taking aspirin is no big deal for them.

We were about to learn just how rare A2's cancer is. I joined a Facebook group for Essential Thrombocythemia, and found only a handful of parents there. The vast majority of members in this group were in their 50s or older. The few parents in the group started chatting, and before long we formed a group for pediatric onset essential thrombocythemia. I learned that A2 is one in ten million, and most of the treatments available to her weren't proven; there were hardly any studies on life expectancy of children who developed this form of blood cancer, because there have been so few cases. Of the few parents in our Facebook group who are active, only a couple are from the United States. The rest are spread out throughout the rest of the world.

For the worries about Reye's Syndrome, we were cautioned that A2 should not get the flu or chicken pox. For the first time, we all got the flu shot in 2016. Chicken pox is no problem, since she's vaccinated for it. We put together a health plan with the nurse that explained to teachers that they needed to watch for signs of deep vein thrombosis or stroke. It's odd that I have a ten year old child who is at a much higher risk of stroke than most elderly people I know. Because of her aspirin therapy, we also have to make sure she doesn't get cut badly.

In November, A2 had a bone marrow biopsy and an ultrasound of her spleen. This was a relatively easy procedure (the bone marrow biopsy was done under general anesthesia) done at Rocky Mountain Hospital for Children. Everything went well. No scarring of her bone marrow and her spleen isn't enlarged. Her platelets continue to climb (as of this writing her platelets are 1,453,000; normal is around 350,000). We are considering obtaining a second opinion; it's not that we don't trust our oncologist, it's that this is so rare that we're concerned we may be missing a treatment option.

Mostly, we just keep going. Some days, she's really tired. She has random bone pain that is probably due to the Essential Thrombocythemia. We met with our local first responders to make sure they understand how critical her situation is; that way we don't worry about them thinking we're overreacting if we call 911 because she's having stroke symptoms. Because yes, our ten year old could actually have a stroke. We've changed our diet to be more healthy; less gluten, more whole grains, more raw vegetables, etc.

Whether you're the parent of a child who has a diagnosis of Essential Thrombocythemia (or Essential Thrombocytosis) or an adult who has that diagnosis, I've put together some links you may find helpful.

First, read my post about what to do if your child is given a shitty diagnosis.

This .pdf, from the Leukemia and Lymphoma Society, is a great starter information sheet for caregivers including school nurses and teachers.

This site gives a broad overview of ET.

This site has a pretty comprehensive FAQ about ET.

Voices of MPN is a great site put together by Incyte Corporation. They send you brochures, bracelets, and ribbons to help you build awareness.

National Cancer Institute has some good resources, too.

Facebook Essential Thrombocythemia Group

Facebook Pediatric Onset Essential Thrombocythemia Group