We began the day yesterday on the 4th floor of Duke's Children's Hospital for a background & evaluation on Sam. Yesterday afternoon we met with the Dr.

I can't help but stare at the photos above and wonder how this horrific disease can possibly be happening to us. There are many risks associated with doing the stem cell therapy and there are many risks associated with not doing it. We get to make the choice-you cannot imagine what we are going through.

Please pray for wisdom and guidance for us this week.

Saturday April 5, 2008

If there can be a shining star in all of this it is the people at Duke. On top of scheduling our complete "itinerary" for next week, their compassion is truly heartfelt. We will be leaving Sunday morning and have appointments scheduled each day through Thursday.

Please pray for all of us this week.

Friday April 4, 2008

9am: It is Metachromatic. We are headed to Duke next week. http://www.emmasfoundation.org/KurtzbergVideo.aspx

6am: We will find out today if Sam has Metachromatic Leukodystrophy(MLD). After pouring through numerous personal websites the past several days Dr. Krutzberg's name was ingrained in my brain. On a whim I decided to e-mail her to find out how we would go about getting evaluated should umbilical cord stem cell therapy be a viable option for whatever form of Leukodystrophy Sam may have. With her e-mail address posted on Duke's website, I was afraid my e-mail would get lost in a mountain of SPAM and prayed that it would not. 3 hours later my cell phone rings and it is Dr. K's office calling for a complete background on Sammy. WOW!

I then called the Lab in PA asking for the findings to be released to Duke when they are available and I spoke with Dr. Weinger himself who said they would be ready TODAY! I am not sure if we will know what other form it may be if it is not MLD today and I have no idea what form we want it to be but to get such a swift answer on MLD is a good thing. I will update this afternoon once we find out.

Please pray today that God would continue to open doors for us and lead us to the right people.

Wednesday April 2, 2008

The last of the bloodwork(for now) was drawn yesterday and Sea World is being held over my head. Sam is *much* better after just 2 days on antibiotics so that is a relief. Hope to get back in our normal routine today. Normal is relative.
Our next neurologist appointment is April 17th but I sent them a fax yesterday asking to be notified of all bloodwork results as they come in. The ticking clock is our enemy right now.

Please continue to pray today for the bloodwork to get processed swiftly.

Tuesday April 1, 2008

There was an angel in the lab at Halifax Medical yesterday. She called me back there and had all the paperwork in a semi-circle on her desk. Asked me a few questions, I showed her a few things in the paperwork, she crossed some items off of her notepad and was ready to make phone calls! We were there about 2 hours but Jefferson University will be receiving Sam's blood this morning.

We do have to go back today or tomorrow to have a bit more blood drawn for another test as they had a limit for his weight that they would draw. Sam's ok with that though since he earned a trip to Sea World out of the ordeal yesterday. We came home and started Sam on his antibiotics for the bronchitis I passed on to him and he had full control of the Remote for the remainder of the day.

Please pray today that Fed-Ex delivers the bloodwork to Thomas Jefferson University safely and on time and that the staff at TJU have everything they need. Also that the 4 other tests arrive intact to where they are going and get processed swiftly.

Monday March 31, 2008

Bone Marrow Transplant, Stem Cell Therapy, metachromatic, globoid cell, Krabbe, ataxia, Refsum.... What's in store for us?

The common cold, fever and bronchitis have worked their way through our home the past few days but today we will have Sam's blood drawn to begin the process of determining what form of this monstrous disease Sam has. Sam's oldest brother "Bubba" was here this weekend with his wife Ashley. Sam was in 7th heaven playing the Wii, eating ice cream and playing putt putt! Thanks so much for the calls, the cards and the posts. They mean the world to us. Please pray today that the clerk at the lab has compassion and does what we need her to do with the bloodwork without a hassle-we are asking them to send a sample overnight with special packaging and instruction to Thomas Jefferson University and I'm sure that's not something they deal with regularly and I'm worried about that. Also, please pray for our health insurance, that claims and requests will be processed swiftly and that whatever we ask of them regarding pre-authorization will be honored.

March 27, 2008

We are overwhelmed by the love and support we have received through this simple site and thank each and every one of you from the bottom of our hearts. Many of you have inquired about the Bone Marrow Transplant and how you can help. There is a kit you can order that costs $52.00 and you simply swab the inside of your mouth and send it back. Here is the link: Join the Donor Registry Sam spent his day on the couch yesterday running a fever and catching a cold. We hope to have the bloodwork done today which will be sent to Jefferson Medical overnight for analysis. From the Physician's Orders it seems as though we can check for Metachromatic as well as Adrenoleukodystrophy with what is to be drawn.

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