A-C-C-O-U-N-T-A-B-I-L-I-T-Y

I’m having one of those mornings where I really don’t know what to write about. After having a six-week lapse in blog posts in September & October, I’m hesitant to just let myself have a week off. Having a self-made deadline is both good and bad… I can give myself a pass–oh, you’ve had so much going on, take the week off!–or I can hold myself accountable, which is, admittedly, much more difficult.

I find I give myself a pass a lot… and with so much going on, it’s no wonder. But, I need to stop doing it. I made a commitment to write a blog post once a week, by Monday, a few years ago. Most of that time, I’ve done pretty well… Lately, not so much.

Sure, a lot of my brain power right now is being taken up with debating the merits of a non-malignant bone marrow transplant with my son. What’s left has been shifted into writing a project that really shouldn’t be getting written right now. Out of all that time, I have 30 minutes or 45 to write a blog post, but when I’m sapped, who wants that?

Despite what’s going on, though, I made a commitment. If I were to have a book deal, I’m sure my editor wouldn’t say something like, “Oh, Liberty, we know you’ve got a lot going on right now. Just get us your manuscript anytime you wish. We’ll still be here.”

Yeah, fat chance of that one happening.

I’d be out of a contract and have a bad name in the industry faster than you could whistle Dixie.

And, on the publishing front, if you follow my Facebook page, you know I did hear back from the agent who asked for my partial. “Too dark for a cozy” is about what it amounts to. So, in addition to writing this novel which really shouldn’t be getting on the page right now and weighing the benefits of a BMT on my son with the negatives, I’ve got to make sense of what to do next.

One of my critters thinks my novel’s not ready… which I can sort of see… but what to do with it? Still, I have this agent, a fairly well-respected agent as near as I can tell, who expressed that I have some good writing. What do I do with that?

I’m not sure I’m willing to let things calm down enough to give myself breathing room to contemplate it. I need to keep moving forward, even if it’s millimeter by millimeter, rather than by leaps and bounds. I’m not willing to come to a standstill (which I sort of feel I’m at now), or, worse, move backwards.

Which is why I do feel like I need to keep blogging–to keep my brain active, and not let myself fall behind.

Maybe it won’t make a lick of difference, but for now, I need that accountability.

And, it may not hurt to have a place to vent.

Until next time,

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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

It’s Coming!

… and I don’t necessarily mean in a good way!

Since my son was diagnosed with Shwachman-Diamond Syndrome, we’ve known one of these days, he’d be having a bone marrow biopsy (BMB).

Well, it’s official. He’ll have one late next month.

This has left a lot of our family and friends with lots of questions, some of which we don’t know how to answer (and are fumbling around trying to at least sound somewhat intelligent when we respond.) Why does he have to have a BMB? Will he have to have it multiple times? Will he be sedated? How long will he be in the hospital? What are they looking for?

I asked my online support group about it, and they pointed me to these two resources:

Bone Marrow Biopsy and Aspiration
Bone Marrow Biopsy Day

Am I glad I asked! I think both resources answer more questions than even I’d thought to ask. 🙂

Probably our next biggest question is how long it’ll take to get the biopsy results–TMOTH has asked this, and I told him I had no idea, but we’d probably have results by Easter–let’s hope sooner!

More on health: our son’s doing better, and it’s been 2 weeks since he’s had a CBC (Complete Blood Count) run. We go back tomorrow for another CBC. We’re watching his hemoglobin slowly rise, and I’m hopeful it’s closer to the normal range. As an aside, our son isn’t the only person I’ve learned of in the last few days with low hemoglobin levels–a friend’s child was down to 6 last week (never heard for sure if the child had a transfusion or not) and a member of TMOTH’s family also had their hemoglobin drop and had to have a transfusion. At least I can understand the worry when it happens now!

Next week, I’m going to try to get back to a post on writing or some such thing. Maybe an update on those resolutions I wrote about a few weeks ago. (Hint: I’ve lost some weight, but have no clue why! I’m not exercising like I know I should be…)

Until next time,

Liberty

Gifts of the Heart

Merry Christmas, a day late! Or, as our friends across the pond may say today, Happy Boxing Day!

I hope you’ve had a most blessed Christmas… and managed not to kill any of your family. 😉 Or is it just me that struggles with those feelings sometimes? (tee hee hee, just kidding!)

Today is my regularly scheduled post for the ChristianWriters.com blog chain, and to be honest, the topic (Gifts of the Heart) kind of has me stumped. But, I shall charge on!

When I read the topic (admittedly, about 5 minutes before I started writing this post), I thought, huh.

So, rather than do a traditional post, I think I’ll leave you with a few pictures of some of the things that warm my heart. I hope you’ll find them as endearing as I do.

Obviously, these are my kids… and my dog. 🙂 I’d put TMOTH’s picture up, but I’m not sure if he’d be okay with it. 
So, my family is my gift of the heart… I hope you can say the same for yours!
In a little sidenote, I want to give a brief update on our son’s health. Last week, we thought everything was going well, and then we went in to see his dermatologist, who, on a whim, ordered some blood work. Our guy has been sick most of the time since Thanksgiving, and when they ran his hemoglobin, it was 6.3. Normal is between 12 and 18, so he’s exceptionally anemic right now. We have his blood retested tomorrow, and his hematologist (blood doctor) is watching this closely. We’ve managed to get through Thanksgiving and Christmas without being admitted–and seeing as those were both spent at the hospital in 2010, this is a great thing. Hopefully, we’ll make it through the remainder of 2011 without being admitted again! (Now, if we can make it through cold and flu season…) 
If everything is okay, I guess you’ll hear from me next in 2012… wow, can it really nearly be 2012? It barely seems like I was getting a handle on 2011! If for some reason things aren’t as good as we hoped, I’ll try to post a short update on Tuesday or Wednesday. 
(But I’m hoping it’ll be 2012 before you hear from me again!)
Happy New Year!
Until next time,
Liberty

What *Is* That?

As I said in my last post, I was toying with doing an update on my son’s health for this post.

Because of the rareness of his condition, I’ve thought about it and decided to share.

Chances of a child getting SDS from carrier parents

While my husband and I are still awaiting genetic confirmation, it is believed my son has an autosomal disorder called Schwachman-Diamond Syndrome. While related to cystic fibrosis, it’s not the same. Schwachman-Diamond Syndrome (or SDS) mainly affects the pancreas, bone marrow, and skeleton. While we’re not sure about our little guy’s marrow, we know it’s affecting the pancreas and skeleton.

In a normal person, the pancreas excretes enzymes to help process foods. In an SDS person, the enzymes necessary to process fat (at least in our case) aren’t present. These must be supplemented, which we’ve been doing for approximately a month. This is apparently part of the reason our son hasn’t been putting on weight, and at 8 1/2 months old, has just barely doubled his birth weight (something that normally happens by the 4th month.) If you can’t process half of what’s in breastmilk, you can’t grow. :/

As for his skeleton, we know that our son’s ribcage is misshapen. I haven’t had it fully explained to me, but there are other markers in his skeletal x-rays that are consistent with a percentage of SDS cases.

SDS is extremely rare. Our doctors say it occurs in about 1 in 75,000 people, which puts the numbers in America in the 4,000 – 4,500 range. One of my son’s doctors has about five patients in our metro area (around 2 million people.)

More information about SDS can be found at the SDS Foundation website and Wikipedia.

So, what’s this mean for us right now? Well, our little guy is getting intensive treatment from his doctors. He’s seeing three specialists and we fully expect to get at least one more in the next month or so. Medications are being added to his regimen on a regular basis. And, after being on a feeding tube since Christmas, we had one doctor tell us he wants X-man (our son’s nickname) off the tube. After thinking about this, I can see the reasoning. It wasn’t necessarily that X-man wasn’t getting sufficient amounts of food, it was the fact he couldn’t process up to 1/2 of what he was receiving!

Obviously, this isn’t going to be a walk in the park. He’s at a higher risk for severe infections (like when he landed in the hospital in February with pneumonia,) leukemia, type-1 diabetes, and the need for a bone marrow transplant in the future. Whatever comes, though, I know I have support from our friends, family, and church, as well as a spring of strength from God.

Until next time,

Liberty