Friday, March 5, 2010

A trip to St. Louie....

So yesterday was the big day. Lu and I drove the two and a half hours to St. Louis for her appointment at Children's Hospital. We had to get up early and get ready and leave. Neither of us is good with early. Oh yeah, there was an emergency stop at Starbucks in our future. Because just in the half hour drive to the nearest town? I found myself creatively naming the other drivers and resisting the obscene urge to flip off absolutely everyone I happened to see. Convo~

Me: WTH?! Is today national drive-for-shit day and I missed the memo?

Lu: You didn't get that email?

Me: Damn spam filters! I miss all the good stuff.

But after fortifying myself with a Venti Caramel Frappachino, I was feeling a bit better. Oh, other people were still driving for shit, especially as we got into the city, but I was coping better. And then I was forced to whip out in front of a truck. Truly sorry, I hollered my apology~

Me: Sorry Mr. Truck Driver. It's national drive-for-shit day! Just doing my part!

I doubt he heard me. But thankfully he did not run us over.

We got to the hospital on time, found a spot in the parking garage and headed to the lab. We were done in minutes and Lu only squinched up her face a little bit when they took her blood. Then we proceeded to the ninth floor where her appointment was. Apparently every hospital pairs hematology with oncology. Because there was a waiting room full of kids waiting for chemo treatments. Yeah, I said kids.

We've gotten used to the waiting room at our cancer center, but it's very rare to see kids there. Sitting in a waiting room with children with cancer sucks the joy right out of your soul. As always, I look around feeling equal parts blessed (because my own children are cancer free) and guilty (because my own children are cancer free). And while Lu's disorder is serious enough, she's not dying. And she's not going through chemo. And she's getting to live her life, pretty much without restrictions. And it doesn't seem fair. And I know that life is rarely fair. But there just seems something cosmically wrong about small bald children in surgical masks stoically awaiting chemo. And while Lu sat with her nose stuck in her book (denial is that girl's best friend), I sat silently offering my many thanks to the powers that be that we are indeed fortunate and blessed in our daily life.

I know that one of the comments I received on my post about Lu's ITP said that they liked how I never seemed to ask "why us?". Well the credit for that has to go to Hubby. When we got CJ's autism diagnosis 17 years ago we were both still very young ourselves (22 & 20). And during one of my crying jags and our discussions I said exactly that. "Why US??! I did everything right for my pregnancy. I did everything I could to ensure a healthy baby! Why us?". My husband looked me right in the eye and said~

Husband: Baby, don't you think everyone who has something bad happen asks that same question? Do you think someone who's in an accident and is paralyzed looks up and says "well thanks God. I totally deserved that." Do you think parents of children who die think "you're right God. I needed to be taken down a peg or two." No, honey, they don't. It's not fair. Life isn't fair. But there's no use in asking "why?" because the only answer is "because". The question is "what are we going to do about it?". Because really that's all we can control.

That he had that attitude at 20 never ceases to amaze me. It was the last time I ever questioned why something happened. You get dealt your hand in life and the only thing you can control is how you play it.

As for Lu's appointment, they sure do things different in the world of pediatrics than they do in adult medicine. We had a female doctor come in, take the case history, and talk to us. She said they really don't treat kids unless their counts drop to 10,000. The hell? That seems scary to me. What if you need an emergency appendectomy? They won't even operate unless your count is 70,000. We discussed Lu's age at onset, the fact that she's moving in 6 months, and the fact that she is in those childbearing years. That Doctor left and brought in the head doctor (who I refer to now as Dr. McHottie. Because, well, wow.). He discussed some options and really made sure Lu understood the basics of her disease. The game plan? They are going to monitor her platelet counts for the next four months. If they stay above 100,000 and level off on their own it's okay to not treat. If they continue to drop or crash and get below 50,000 then we will look into a treatment called Rituxin. It would mean a weekly trip to St. Louis for a several hour infusion for four weeks. After that, she may be susceptible to colds and viruses for another 9 months, but then? Immune system back to normal, possibly cured for life!! Very few side effects. Me? I was like why can't we just do that, if it might cure it? Apparently the drug is not FDA approved for the treatment of ITP even though it's also used for that purpose. So most insurances don't cover it and it's very very expensive. Apparently, they don't understand that I will do whatever it takes (sell a kidney, sleep with a millionaire, humiliate myself in public, anything) to get her a cure. But for now, we wait.

So three hours later, we left the hospital. And then we hit the Galleria Mall. Three stories of shopping bliss, because why waste a trip to St. Louis? And the best part? She didn't even make me go into Aeropostle or Hollister. We did hit some awesome stores though. Victoria's Secret, Hot Topic and a funky little boutique called Francesca's. She also took me into Heritage 1981/Forever 21. Because somehow she ended up with a gift card to there. And this was the conversation:

Lu: C'mon let's go into Heritage 1981 and you can look at all the clothes you wish I'd wear.

Me: Huh?

Lu: You'll see. *she pulled me in and we started perusing the racks. finally she found me again* Did you find anything I might wear?

Me: No. But I found loads of stuff I'd wear if I was thinner. Look at these combat boots and this awesome skirt!!

Lu: Did you pull that out of your closet circa 1986?

Me: Yeah. I used my "hot tub time machine" to go back and get it.

She did end up with a dress, a shirt, a jacket and we both got necklaces. I only hope she has the guts to wear the dress because she looked amazing. =]

Have a wild & wonderful weekend,


  1. Rituxin is WICKED expensive, and not a whole lot o' fun. Some people are highly allergic which can lead to a whole mess o' trouble, so be careful. Also, has any body every told her to cough before they jab her? Something about that action makes your body a little less susceptible to pain for a hot second. I think it works, anyway.

    Your husband is adorable. Lick him for me, k?

  2. I am glad that Lu got to see someone, though, and that they have a "game plan" of sorts for the future. Best wishes and hugs and all that!

  3. Hmp. Hubs is a pretty super cool dude. Not that I should be surprised ... but you know ...

    Glad you and Lu had a decent time ... after.


  4. Woah, cured for life? That would rock!
    I hope it all works out, and tell Lu good luck for me!

  5. Hi Spot!
    I see you around Unabridged Girl and Zeldagirl a lot. I thought I'd hop on over and read a spell. I'm glad I did.

    All I can say is that I'm happy you and your husband adopted the mindset of dealing with life straight on. I had to do the same.

    God speed!

  6. Your hubby is a very wise man. Glad they do have a plan for Lu and hopefully a cure soon. Sounds like you two have a blast together.

  7. Elly~ thanks for the info and the tip. I will pass that on to her. She really hates getting stuck. They did mention the possible allergy to us and said they start very gradually and give Benadryl IV too. My research is finding that it's not quite the miracle they made it out to be. I will lick hubby and tell him it's from you. He'll probably really like that. =]

    UnA~ thank you dear. It helps to have a plan!

    Dani~ yeah. That's why I don't smother him in his sleep. =]

    Dorkvader~ I will indeed pass on your sentiments. Thank you!

    Hadassah99~ Thank you for stopping by and for commenting! I love new peeps.

    SuziCate~ Thank you. He can be. Haha. And we do have a blast. Nearly always.


  8. You are lucky to have such a smart husband, but you are a pretty sharp cookie yourself. And wow, a possible cure! What great news. And plus, no treatment required for now is also great news. Both of those in the major category. In the minor happiness news, new clothes, necklaces and Dr. McHottie! Guess that will make those trips to St L not quite so bad. Any chance that this thing could get better on its own?? Or enough so that maintenance and monitoring will be all that's needed? I hope so!

  9. What an amazing attitude for your hubby to have at such a young age. You are a very lucky lady. I find it amazing you can feel blessed, with all that your family has been going through medically. You are truly an amazing woman.

    I really hope everything goes good with Lulu's numbers.