How High Can You Jump?

So, things are moving a little faster than anticipated.  Last week, I stated we hoped to go out of town soon for my son's treatment. Within TWO HOURS of posting last week's blog, I had a call from the hospital. "Can you come see us next week?"

Next WEEK? Are you KIDDING ME? Do you realize we live 2,000 miles away????

It's really amazing how things can come together in just a few days with less than 10 days warning. People have stepped up to help us out, which has been the biggest blessing of all. I've been truly stunned and humbled by the assistance we've received. It's made a stressful time less-so.

Photo by Vox EFX

I'm a little anxious about the trip... mostly because I've read too many horror stories about the TSA, so the thought of going through security with 2 strong-willed kids, and a headstrong momma (me), I'm a bit afraid something will happen that will make the news.

Seeing the doctors, being on the plane, that doesn't bother me. Being subjected to something that in my mind is a direct violation of my 4th Amendment rights (that's the one about illegal search and seizures, folks) puts me on edge. Heck, with my background, I should be scared of being on an airplane. My dad has worked for one of the airplane manufacturers for most of my life in the department that fixes crashed airplanes, so I've seen more crash photos than the average person. (I am also more than aware that the most dangerous place for a plane is on the ground--not in the air. More damage is done by stupid ground people than pilots that have been drinking too much. Maybe sometime, I'll tell you my favorite story that my dad repeated to me, about a "crash" on the ground...)

Really, I'm glad that we're going out now rather than later. Waiting makes me nervous. But, it does make me concerned that they felt so strongly about his case that they felt the need to get us in this soon. Maybe it's not as serious as I'm fearing, maybe they're just being pro-active. (Please, please, please let this be the case!) Still, I'll be glad when we're back on the ground in good ol' Kansas City...

Until next time,

Liberty

P.S.: I've received a lot of questions about how people can support us during this time. Prayers are always welcome! But, additionally, if you're between 18 & 44 and in generally good health, you can get tested to become a potential donor. Search for a donor drive at this link, request a test kit here, and maybe even consider hosting a donor drive! Marrow.org has additional information, just surf the site and see what's there! Also, if you know a woman about to have a baby, urge her to donate her umbilical cord blood for use in transplants (and for research.) -- LS

Life Goes On

Life goes on.

This is the lesson I got in the last week.

I also got this lesson: don't count your chickens before they hatch.

What am I talking about? Is my son's health okay? What's going on?

Well, here's the long and the short of it: life continues happening even in the midst of trials. And it can make it completely crazy, but it can also give you bright spots during the times you're in the deepest, darkest canyon.

Take for example what's happened in the last few weeks. If you read one of my last blog posts, you know my son's been marked for a bone marrow transplant. Not the most fun thing, especially when the two-year survival rate for someone with SDS is somewhere between 45 and 60%, depending on what method and drugs are used to prep for transplant. For this reason, my husband and I decided to get a second opinion, since we want to be absolutely sure that this is the road we'll go down.

Which led to a flurry of activity, and ended with me having a lengthy conversation with one of the doctors who is probably in the top three in the nation, if not the world, with experience with Shwachman Diamond kids. Of course, we can't stay in Kansas City to get our second opinion. After speaking with this doctor, which I'm going to call Dr. S (because her name is too long and difficult to pronounce!), it was decided we'll be heading out of town, we know not when, for that second opinion. Hopefully, sometime in the next few weeks to a couple of months.

So, while we're waiting on the answers, we find out our daughter is NOT a match for her brother, which means we have to go to the national registries. Mixed feelings about that. Glad she doesn't have to go through that, but at the same time, now we don't know whether he'll have a match.

Enter: a bright spot.

You know how a few weeks ago, I said I was giving up on "Homebody"? That I'd decided it was time to tell it goodbye, thanks for the memories, all that? (Here comes the "don't count your chickens" part.) Yeah, I may have spoken too soon.

With everything going on, I hadn't checked my business e-mail in 6 weeks or so. Last week, I decided I'd better do that because I *thought* I may have a short story out somewhere and probably should see if I'd received any mail on that.

Well, I didn't have anything out on my short.

But, I did have a reply from an agent I'd sent "Homebody" to back in--get this--February. FEBRUARY! This was a query only agent, which means I didn't send anything to them besides a letter. I saw their e-mail in my spam box, and thought, "Oh, here's another rejection." But I opened it anyway.

First, there was an apology for the long time in getting back to me. But then I read these words: I'd look at the first 75 pages and synopsis after 8/20 if you don't have an agent.

Did I read that right? I got a request for a partial?

HOW COOL IS THAT?!

So, the day I actually read this, I went around the rest of the day with a stupid grin on my face, unable to do anything. After that, it's been a mad rush--is everything ready? I did some changes to the opening scene--does it read okay? And about that synopsis, I never was happy with it, so let's rewrite that on the fly.

And, I have to admit: I haven't sent in anything yet. But, I'm close to doing it. Hopefully later today. I'm nervous, excited, and at the same time, if this is meant to be, let it happen. Maybe I wrote off this book too soon. If not, maybe I'll get some decent feedback, and perhaps, the agent would be willing to look at another project when I've got them done. We'll have to see.

Funny thing is, I looked at the day they sent the e-mail. It was the day before my son's biopsies. I find that kind of meaningful, but that's just me.


In closing, I thought I'd share something that proved especially meaningful last night. My husband and I have seen "The Fellowship of the Ring" dozens of times. We saw it in the theater when we were dating. But, we hadn't watched it in a while due to the demands of parenting. Watching an episode or two of "Castle" or "Stargate" in the evenings is all we have time or energy for, let alone a 3 hour movie!

Near the closing of the movie, Frodo says, "I wish the ring had never come to me."
Gandalf replies, and I'm paraphrasing, "So do all who live in perilous times."

While I wouldn't say my life is perilous, at least not at the moment, it hit me. I could really get Frodo in that instant. Since we found out our boy has SDS, I've prayed, "Don't let him need a BMT. Don't let him have cancer. I can handle diabetes, but please don't let him ever have to face cancer treatment." Not much different than Frodo's lament.

Oh well. I have a request for a partial, and while it doesn't make my troubles go away, it does make them a lot more bearable.

Life certainly goes on.

Until next time,

Liberty

Topsy-Turvy

The last ten days have been anything but normal. And, the news TMOTH and I got last week has definitely turned our world on its ear.

Our son is headed for bone marrow transplant.

When I got the news a week ago, I fell apart. My world has been rocked. How could this bubbly, hyperactive, absolutely most adorable little boy in the world need such a risky procedure?

But, at this point, he does. We've got a lot of steps to go through before the ultimate decision will be made. And, we have to find a donor--it's not certain any of his immediate family will be a match. The likelihood is 25% for his sister, and 2% for both TMOTH and me--29% chance that one of the three of us will match.

The dust is just starting to settle and I can think straight again after getting the call last Tuesday. But most of my energy is being spent trying to figure out what's next, and looking down the road to the next few stages of treatment. Still hoping that when we go in to do another biopsy prior to transplant that the numbers have changed and we can hold off. I'd rather deal with biopsies every 3, 6, or 12 months than transplant.

I don't know what this means for my blog, or even my writing in general. I know I'll need to write to deal with the stress. And it seems like I've had three major things happen in just the last few weeks: first, deciding it was time to say goodbye to "Homebody" and move on; second, a personal decision to work on something I'd been struggling with for a long time; now, this. All in a matter of just a few weeks.

I'll check in when I can, try to post as I'm inspired or led... and this blog may turn into more of a journal of our journey, at least for a while.

Thank you, loyal readers, for any prayer you happen to send my family's direction.



PS: If you should feel so led, please consider becoming a marrow donor. It's an easy, painless process to get on the registry (although there is a small fee unless it's associated with a donor drive). Please check out Marrow.org for more information. -- LS