In February, I introduced you to a little boy named Xander, born in 2010 with a rare genetic disorder called Shwachman Diamond Syndrome (SDS). Many areas of his health are affected (skin, pancreas, bone formation and growth, etc.), but one of his primary health problems is bone marrow failure, which can lead to leukemia. In Shwachman Diamond patients, leukemia is almost fatal. So Xander and his mom traveled across the country to a special hospital in Seattle, Washington, for a bone marrow transplant. Now that Xander's had this treatment, Liberty found time to update us on Xander's health and how we can help both him and his family.
Can you give us an update on what's
happening with Xander right now?
Liberty: Right now, we're at Day +28 (I’m writing
this on May 29.) What this means is we're 28 days post transplant (the day of
transplant is day zero.) In the last four weeks, things have been crazy. Less
than a week post transplant, Xander contracted RSV (as did I!) which was about
the worst timing possible. So, in the last three+ weeks, we've done two 10-day rounds of a drug
called Ribavirin, which is aerially dispersed, and very hazardous to bystanders
(like the nurses and me.) If I had to count how many times I was asked if I was
pregnant, nursing, or planning to become pregnant in the next year, I think I'd
run out of fingers and toes!
Now that we're mostly past the RSV, Xander is doing really well, although he
was a trooper the whole time. Despite two separate visits to ICU during this
period, to my way of thinking, he was never quite sick enough where he actually
needed it; they sent him there mostly because he needed some extra respiratory
support and the medicine load was so hefty that his nurses were finding him a
After two weeks or more mostly bed-ridden (partially because he was sleeping so
much, most of it drug-induced to keep him comfortable), Xander's pretty weak,
though strong when he wants to be - like when he doesn't want someone messing
with him! His walking is shaky, though, and he needs someone nearby to prevent
Currently, we're tapering a lot of his medicines, and working on increasing his
food intake since he's been on IV support for the better part of a month. Even
through the RSV, we had a lot of great milestones and were able to have some
small celebrations - even in ICU! Thankfully, we're out of ICU, and hopefully he
won't go back.
Me: How are you and your family holding up?
Me: What can we specifically pray for Xander, you, and your family?
Liberty: For Xander, pray that his immune system continues to
improve, that he continues to strengthen, and that the next 72 days go smoothly
(We have to hit Day +100 before we can go home.)
For me, pray for patience and
sufficient rest. It's been 5 weeks since I've slept in a real bed overnight, so
actual good, solid rest has been near impossible. I think I've had one or two
good nights the whole 35 days we've been here.
For my husband and daughter, continue to pray for
their general health and that the Lord will help them both not to feel lonely
without not just each other (they're still separated, although they had a
weekend visit over Mother's Day) but without Xander and me.
Me: Is there any other way readers can help?
Liberty: Prayers are always welcome! One other way would be a blessing to me,
and that's to help Nate. Our church is trying to support him by making him
meals a couple times a week, but with summer, the signups are dwindling. And,
while I know your readers are worldwide, and can't
necessarily take him a meal, a gift card to a restaurant helps more than you
can imagine. Many times, a $25 gift card to Applebee's or someplace like that
can give Nate two dinners, occasionally three. You can private message us for
the mailing address or restaurant preferences/availability at Xander's Facebook