Some bad words

Some words are inherently bad words; you know the words I’m talking about, all those that fall into the category that I was taught as a child not to say, or rather repeat – since my mother, growing up speaking Slovak but also Hungarian, a language revered for its ability to express the foulest sentiments to an unparalleled and untranslateable degree - could swear like the best of them; the adults-only locution started to appear somewhere around my late teenage years; by college, gems like ‘sh-t,’ as in “oh ‘sh-t.. sh-t sh-t sh-t sh-t sh-t!’ what did he/she/I do last night?” were part of the weekly discourse. By law school, my swearing increased with an algorithmic certainty, and by the time I was a county serf (I’m sorry, county litigator…) and battled daily with a cast of Public Defenders, my sense of verbal propriety flocked to higher ground and I developed the mouth of a sailor.

Then there’s a different category of bad words. Much more nefarious than a mere dropped explitive post stubbing of toe, and one that doesn’t just fall into the adult world, but into that of children.

Motherhood has changed me in a million ways. For the better. Usually. But I’ve also become sensitive… hyper-sensitive? Overly-sensitive? Sympathetic? Less selfish? To explain: I’ve never been a crier. But for some reason, post-child, tears come a lot more easily. Call it hormones, sleep deprivation, fear of losing my happiness, or a greater appreciation for the preciousness of life… all of the above. In our little community, and San Clemente is really a little town – you can’t walk out the door without bumping into just about everybody (therefore, lip gloss always in the bag, sunglasses on if I haven’t had a chance to shower…) – other moms’ heartaches become my own, other moms’ pain haunt me.

Which brings me to the part about bad words. Recently, I’ve had to learn about that whole second category of bad words; evil, terrible, cruel words that strike at the heart of parents and their beloved children.
Words I wish I would never have to know include Diffuse Intrinsic Pontine Glioma. This, is the worst category I can think of…
This past week, beautiful 5 1/2 years old Maddie James from Capistrano Beach, who looked like she could have been Alex’s older sister, passed away after a terrible and brief battle with an inoperable pediatric brain tumor – see above DIPG- that took her away only 2.5 months after her initial diagnosis. I have shed tears throughout the last 10 weeks as I followed her caring bridge website, which was brought to my attention by a mutual friend. This full of life little angel, whom I never met but still mourn, said goodbye to her parents, after having learned some of the worst words ever. Her parents have set up a foundation to honor Maddie, and are hoping to raise sufficient funds to build the Maddie James Seaside Learning Center at the Dana Point Ocean Institute. (See http://maddiejamesfoundation.org/about.)

And there have been a lot of tears these past couple of months in our house. And this time there are more bad words that hit a lot closer to home. Other evil words: Aplastic Anemia.
In February we got a call from Pete’s baby-sister, 16 yrs old Brianna whom many of you might remember from my wedding (our flower girl). She had just been released from Children’s Hospital Los Angeles after a 2 weeks stint, and now had the battle of a lifetime ahead of her, following a diagnosis of the above bad word.

When she told us about it, she really didn’t explain what it was. Rare. Blood Disorder. Anemia. OK. Have heard of anemia before. Pregnant women, we get tested for it. Iron pills, right?
Nope.
Peter and I immediately went to the Mayo Clinic website before we got in touch with his parents, and this was the beginning of all the scary words I never wanted to know.

Aplastic anemia is a rare blood disease (only approx 300 Americans per year are diagnosed) that stems from a failure in the bone marrow to function properly- basically, no red, white blood cells, no platelets. The causes can vary – from resulting as a side effect to chemotherapy or other aggressive drugs to being a side effect of an auto-immune disease or an unfortunate result of pregnancy; then there are the genetic cases (which are universally lethal – the life expectancy is to age 20, and since Brianna was adopted and our family doesn’t have a full medical history of extended family, my in-laws went through an excruciating week waiting for pathology to see what Brianna’s fate was in terms of the type of anemia she suffered from.) Finally, there are unknown as to cause cases; this is where Brianna falls. There are various degrees of the disease, from serious to very serious to fatal. Brianna is in the very serious category.
The day before the whole nightmare started, Brianna had a dance concert, had been tired and not feeling well, and had been bruising a lot more than would be expected from rehearsals. Still, aside from the basic concern, nothing seemed out of the ordinary. The day after the concert, she felt ill, tired, so she stayed home from school. And collapsed. My sister-in-law, Alex’s beloved Aunt Ali, was home when it happened, found Brianna, and she and her mom dialed 911. Chaos ensued, terrible other diagnoses were thrown around the ER (apparently the default in the ER is leukemia… but for the fact that this is the polar opposite- instead of over production, this is total lack of…), and finally, at Children’s Hospital LA, the pediatric hemotologist tossed out the correct bad words.

Since Brianna’s stay in the hospital, she’s been able to be home which is considered more sanitary than the hospital. She’s taking a bunch of strong medications and the prognosis is hopeful; we all remain cautiously optimistic, as she has responded to treatment well. She’s had to have transfusions at the beginning, but luckily from a single donor, and her piccline has made life a little bit easier; poor thing is bruised from all the initial needle pricks, and already had to have a bone marrow sample drawn (we don’t like to talk about the alternative if the medication doesn’t work… the only option at that point is a transplant.) She has not been able to return to school since the medications kill her immune system so that it can rebuild itself, but hopefully by the end of spring/early summer, she can star in another role in the school play… (she had to give up the lead she worked so hard to get in a production that is on tonight – the good news is that she’s finally well enough to be allowed out into public, and is able to attend the play.) She’s basically homebound, but since our visit last weekend, she has been able to go to a restaurant and of course, tonight is date night with her adorable boyfriend at the high school.

We’ve visited her up in San Marino a few times, spirits are high, she’s got youth and positive vibes on her side.

I just wish never knew what aplastic anemia meant.