Feb 14, 2013

This Child Needs Your Help

Alexander ("Xander")
In August of 2012, doctors at Children’s Mercy Hospital in Kansas City, Missouri told Alexander ("Xander") Speidel's parents his marrow was failing and a bone marrow transplant was needed. Xander's mommy is my friend, Liberty Speidel. 

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?


Liberty: Xander was a full-term, seemingly healthy baby. He was born at 8 lbs, 1 oz. - so not exactly small! But it took over a month for him to get back to his birth weight. By the time he was 3 1/2 months old, he still hadn't cleared 9 lbs. At that time, doctors said he had "failure to thrive" (FTT). 

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.
As to why he needs a transplant, we've never really seen anything "wrong" with him that would indicate he's sick. Yes, he's small. Yes, he has to take medication literally with every meal. If it hadn't been for a routine bone marrow biopsy (routine for people with Shwachman Diamond), we may not have known that Xander's marrow was failing. 

Me: Would you mind sharing a little about how his diagnosis affected your family - both practically and spiritually?




Liberty: Right now, we just keep on keeping on. We take everything a day at a time. But I'd be lying if I said I just accepted everything in the beginning. There have been many days I've been mad at God, even second-guessed whether marrying my husband was a good idea in the first place (because this is a genetic disease; we got "lucky" in the genetics department and are both carriers for the gene that causes Shwachman Diamond). For about the first six weeks after we learned Xander needed a transplant, I cried at the drop of a hat - and I'm not what you'd call an overly-emotional person. We're very fortunate to have groups through our church to support us, to pray for us, and who check-up on us. I just wish they could go with me to Seattle!

Me: Why does Xander have to go all the way from your home state of Kansas to Seattle, Washington?


Liberty: We have good doctors here. I'd be very comfortable having Xander's transplant done in Kansas City. However, the top specialist in Xander's disease is in Seattle. And the Fred Hutchinson Cancer Center in Seattle had access to a low-dose chemo drug that isn't widely available in America - most certainly not in Kansas City. Because Xander already has some very minor liver damage, we're worried about what chemo drugs will do to him. This chemotherapy regimen is specially designed to bypass the liver, which will, in turn, give him a greater chance of long-term health post transplant. 

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?


Liberty: Because we need to be able to maintain our insurance, my husband will be staying home for the most part and working. I've been trying to prep our daughter (Felicity, 4) for the last couple months that she'll be going on a "great adventure" when Mommy takes her brother to Seattle. When I'm up there, and Xander's inpatient, she won't be able to stay with me because siblings can't stay overnight in the hospital room. So, she'll be spending a lot of time with grandparents and aunts and uncles (and cousins!) around the Mid-west until she can come out and stay with us for short periods of time. Both of them will be coming out to visit as they're able.

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! 



But, you know, after thinking about it a bit, my husband and I have been through some pretty tough waters already in our 10+ years of marriage - things that would probably have caused many couples to split. And, though I've told him I'm afraid of the repercussions of my being gone for so long, I do believe that God will get us through this trial. I can't see the path, but I'm clinging to Him to guide us one step at a time - me in Seattle, and my husband in Kansas City. 

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 
mariaholiday08@gmail.com
www.bioceutica.com/maria 

Arbonne International
Host: Liberty Brammer
lbelle5@juno.com
www.arbonne.com/products/index.asp

4. Send a check to:
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.

For more information, follow Xander's page on Facebook. 

4 comments:

  1. 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!!!

    ReplyDelete
  2. Staci, 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!

    Most 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.

    ReplyDelete
  3. When would the cut-off to send money be?

    ReplyDelete
  4. Amanda,

    Xander'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.

    ReplyDelete