Jun 3, 2013

Update on Xander

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.

Me: 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 full-time job!

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 falls.

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?

Liberty: We miss each other a lot. I know it's very tough on our daughter, especially, because while she can grasp the fact that her brother's sick, she doesn't understand that his variety of sick isn't one that you don't get over very quickly. Skype and FaceTime have become lifesavers, and we're working to come up with a weekend in June where my husband and our daughter can come visit. I know all of us will be relieved when we can be together again, especially when it's permanently!

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 page: Facebook.com/AlexanderSpeidelTransplant.

2 comments:

  1. So glad Xander is doing better. May the next month pass by quickly! Just so you know, the link at the end for the FB page does not work.

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  2. Thanks for posting about us again, Kristina!

    The link is what it is typed (obviously the link is currently not working properly, but if you type it in, it will take you right there!)

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