Alexander ("Xander") |
Soon, Liberty and Xander made a trip to see experts in Seattle, Washington, who agreed a transplant is necessary to save Xander's life.
Xander was born in 2010 with a rare genetic disorder called Shwachman Diamond Syndrome (SDS). While many areas of his health are affected (skin, pancreas, bone formation and growth, etc.), one of the primary problems it causes is bone marrow failure, which can lead to leukemia. In a patient with Shwachman Diamond, leukemia is almost always a death sentence.
This March, Xander and Liberty will journey to Seattle Children's Hospital and the Seattle Cancer Care
Alliance so he can receive a life-saving bone marrow transplant—before he develops leukemia. A fully
matched donor has been identified; now his family just has to get to and pay for treatment…and it is costly. That's why I'm asking for your help. As a mom who's had a child whose been near death, I know well that any additional burdens can seem completely overwhelming. Please, first and foremost, pray for the Spiedels. Then please consider helping Xander's family shoulder these costs. (For easy ways to do that, scroll down to the bottom of this post. To learn more about the Speidels, read on.)
The Speidel family. (Photo by J. Smith innovations Photography) |
Me: Liberty, what was the first sign of Xander's condition? What lead you to seek medical help for him?
However, it was a severe case of eczema that sent us to a dermatologist at Children's Mercy Hospital that fall. At the time, our pediatrician believed his eczema could be related to his FTT, and in a way it was. I will always be thankful for our dermatologist because she was and remains a bulldog on his medical care. She had him hospitalized twice - once over Thanksgiving, and again over Christmas - trying to get to the bottom of why he just would not gain weight. We didn't get any answers then, but when a routine blood test came back with abnormal liver enzyme levels, it was his dermatologist who told us she wanted him to see a hepatologist (liver and gastorintestinal doctor.) Very quickly, our hepatologist realized Xander had Shwachman Diamond Syndrome. A genetic test confirmed this, and that opened up a whole other ball of wax.
Xander and his sister. |
Me: Would you mind sharing a little about how his diagnosis affected your family - both practically and spiritually?
Me: Why does Xander have to go all the way from your home state of Kansas to Seattle, Washington?
Between the drugs and the expertise, it seemed like the best option for Xander was to take him to Seattle. But believe me, it was no easy decision. My husband and I spent two months debating it before I finally agreed to go to Seattle.
Me: You'll be going with Xander to Seattle. What will happen with the rest of your family?
Me: How long will you be in Seattle?
Liberty: We expect to be in Seattle between 4 and 6 months, depending on how well Xander recovers. If he has a lot of problems, we could easily be there longer, but typically, 100 days from the day of transplant is when most patients are released and can go home.
Me: Statistically, it's difficult for marriages to survive the illness of a child. How are you and your husband safeguarding your marriage?
Liberty: This is a difficult question to answer, because I don't feel like we've been terribly proactive on this front. I'm trying to find a way that my husband will have his own computer so we'll be able to Skype so we get more than just a voice on the other end of the phone. We've already agreed that I can't make any big decisions regarding our son's care until I've talked it over with him. With the two hour time difference, this could get interesting!
I do know one thing: I will be very happy when our doctors tell me Xander's healthy enough to come home. I may not be able to wait for my husband to get a flight to help us drive - I may be so eager to get home, I'll drive all 30 hours by myself!
You can help!
1. Pray.
2. Eat at Chick-fil-A (7500 W 135th Street in Overland Park, Kansas,) from 5 – 8 PM on
Thursday, February 28th, 2013. 20% of all receipts designated for Xander's Transplant will go to
the family for travel and medical expenses. In order for your meal to go into the fund, you must tell
your cashier it's for Xander's Transplant.
3. Buy skin care products. Two of Liberty's friends are hosting fundraisers through their skin care companies. Please contact the host prior to making an order for additional instructions on ordering.
Intuitiv by Nature
Host: Maria Holiday
www.bioceutica.com/maria
Arbonne International
Alexander Speidel's Transplant Fund
c/o US Bank
15610 Shawnee Mission Parkway
Shawnee, KS 66217
Donations may be taken to any US Bank location nationwide. If your location has trouble locating the
account, they can call the above location at 913.248.2850.
This is heart wrenching. We will pray, and please keep us updated on Xander as you are able. Too bad her husband's family doesn't have the family medical leave act in place. This definitely would qualify! Praying!!!
ReplyDeleteStaci, My husband's work must comply with FMLA, however, they don't have to pay him in that time period. So, that's another part that's keeping him home rather than with us!
ReplyDeleteMost of Xander's grandparents' companies will pay during FMLA; his grandmas are already planning to take some FMLA to help care for Xander's sister.
When would the cut-off to send money be?
ReplyDeleteAmanda,
ReplyDeleteXander's needs will be ongoing for quite a while, possibly even after we return home (prescriptions for anti-rejection meds), so we actually don't have a cutoff currently. Obviously, there is a need now, but there will be a need later as well. We're going to try to get some local fundraisers going while I'm gone, too.