Sam Through The Years

WEDNESDAY, MAY 14, 2008 07:04 AM, CDT

Well this is my first time updating the journal. We didn't have a very good night. Fever wasn't a factor. But Sam had 4 pukes and 2 poops between 9pm and 2am, waking up restless every 45 minutes. Of course, at times he would just fall asleep then the monitor would start beeping or the nurse would come in. At 2am I asked the nurse for something for nausea for Sam. When I came back in the room he looked at me and said ' I wish we could whoosh these germs away' (meaning the germs in his brain). I said me too buddy.

I told him during the night if he needed me to just call out DAD and I would come. A minute later he did that, I got up and looked at him I said are you feeling sick he looked at me at said 'yes' with a quick 'just kidding'. After 2am he puked at 3am and 6am. He was still restless the remainder of the night. At 6am after I wiped his mouth he looked up and said 'I didn't sleep at all last night'. Hopefully he will nap today!

Pray for a better day and night.



TUESDAY, MAY 13, 2008 06:47 AM, CDT

Sam handled day 1 of ATG pretty darn good. Fever hung out at 102 with a top heart rate of 170 and the throwing up continued through the night but Sam managed to sleep good otherwise.

Keep praying for minimal side effects today!


MONDAY, MAY 12, 2008 07:03 AM, CDT

I couldn't have asked for a better Mother's Day morning yesterday. The sound of my precious boy saying "Happy Mother's Day Mom" will never be forgotten. At 8am we did a couple laps then to the kids room where Sam helped both myself and Rick make cards for our moms. From there is was off to the PT room for tennis, baseball and bowling on the Wii. Chemo time rolled around so we brought Wii sports to the room and Sam continued on with boxing & bowling.

A little after noon Sam was done for the day, the naseau resumed and the TV was on. He was asleep for the night by 6:30 and woke several times to puke and pee.

Today begins the final stage of his immune system destruction known as ATG and it is not an easy 3 days. I need some words of encouragement from you veterans out there and Sam desperately needs prayers from the rest of you. Fever, chills, allergic reaction, rash & muscle aches are all common side effects.

Thursday is the day for the umbilical cord stem cell transplant which will drip like a regular IV through his veins. There were 4 umbilical cord stem cell matches for Sam. A bit of each were sent to Dr. Weinger's Lab and the one with the highest level of

Aryulsafatase-A was determined. Thanks to the parents of a precious baby boy with a blood type of 0+, Sam will receive the stem cell transplant he needs. As his cells begin to grow we all have got to be praying that it is his donor cells growing and not his old cells growing over. Please start praying today for this.

Thanks for checking on Sam today!


SATURDAY, MAY 10, 2008 07:00 AM, CDT

Life the past 2 days in 5202....

Sams been throwing up. He throws up after he eats, he throws up when he stands up, he throws up walking the halls, he throws up watching tv. It doesn't happen each time he does one of these things it's just sporatic. He could not hold down one of his oral meds last night-I don't understand why everything cannot just be IV.

Sam *loves* going to art or bingo in the afternoons. They don't have any activities for them on the weekends and I think that needs to change! :) There is no weekend for the kids here.

Sam slept great last night but is already dizzy this morning so it looks like we may be in for another day of buckets.

Sam's big sister Kar Kar is graduating from Georgia Southern University today. Dad drove down to Savannah last night to attend the ceremonies today and we are just so darn proud of her.

Picture journal has been updated:

Please pray for the naseau, headaches and dizziness to go away today. Sam could sure use a break.


THURSDAY, MAY 08, 2008 06:31 AM, CDT

Yesterday Sam got sick several times from the chemo-He was pretty miserable at the start of the afternoon, and the nurse gave him some Ativan-that was a wonderful thing. He really relaxed after that, did not throw up again and made it down to the kid's room for Arts & Crafts. He is very unstable and it took both my mom and I to maneuver him up and down the halls.

Sam had a great nights sleep last night. He woke very briefly when the nurse came in for IV swaps and bp checks-at the 5am check he stuck his arm out and said "I know what to do" in an exasperated tone. But we no longer have the screams and tears-that is a wonderful thing.

Thanks for checking on Sam today!

WEDNESDAY, MAY 07, 2008 06:31 AM, CDT

Yesterday was an awesome day! Thanks so much for your prayers! New nurse came in around 8 for the dreaded blood pressure check, Sam saw it and started to freak. "Sam how many seconds did it take last night to check your blood pressure?" And that was it. The game was on for the day to see if the previous record could be beat. No tears, some big exhales and discomfort but what a difference!

The dylantin made Sam extremely unstable when walking. His right foot was almost at a 90 degree angle yet he wanted to get to Bingo and play the Wii and go pick out games and movies so that made for some fun hanging on to Sam and maneuvering the IV pole.

I came back to the apartment where my mom and dad were waiting (yay, dad got out of the hospital), and had a great nights sleep.

The only news I have from 5202 is that Sam was getting extremely dizzy last evening so it seems the side effects from the chemo are kicking in. I'll try to add on an update a little later once I hear from Rick as to how they passed the night.

Please pray for Sam today. Pray for minimal effects from the chemo and pray for a great day like yesterday!

***UPDATE*** Sam had a pretty decent night. He did get sick but just one time and that was around 6pm. In the evening he was tired of being in bed so he hung out in the recliner with Rick for a while. He slept through the first blood pressure check-woke a few times for the potty and subsequent bp check. Woke up around 6:30.


TUESDAY, MAY 06, 2008 05:52 AM, CDT

Sam had his central line put in as planned yesterday morning. Felt a bit of discomfort through the day but not enough to keep him from Art Fun in the kid's area or an hour and 1/2 of Wii with dad in the PT room followed by another few hours of Playstation Pro in his room.

Sleep? What's that? I think I accumulated about 3 hours worth last night. Sam was quite hyped up and could not settle down-a side effect of the Dilantin they started him on yesterday. We finally both feel asleep around 10 only to have one of his alarms go off 5 minutes later. It was not a cause for concern (as was the case for 19 out of the 20 alarms last night) but they wanted to check his blood pressure. They want to check his blood pressure every 4 hours-let's just say that did not go over well, they tried again at 11 and again at 12 and each time Sam would scream and cry and they were unable to get a good reading. We finally got a good read at 5am with the promise of whatever movie or Playstation game he wanted as soon as he woke up. So a good read, some blood drawn and chemo started. All at 5am.

His line was itching him like crazy, his chest was sore, he was hot, he was cold, each bag of IV fluids that went in, had to come out(hourly it seemed) his monitors would go off followed by an empty IV line alarm, -hustle and bustle out in the hall, kids crying and so day 1 of life on 5200 rolls into day 2.

Today chemo has already started, dilantin will continue. I hope he sleeps in this morning, his little body needs it. He will get a dressing change on his central line site this morning and that's not going to go over well.

Please continue to pray for no infections at the line site, and pray that Sam would begin to handle the blood pressure cuff-I know that may sound silly but it really upsets him. Pray that Sam would have a restful day! And please pray for my dad. He is in St. Joseph's hospital in Savannah right now hopefully getting discharged today. On their way up here they stopped over in SC for the night and dad's heart got out of rhythm. They transferred him to Savannah, got his heart back in rhythm, kept him for observation last night and they should be here sometime today. Pray for dad's heart and his strength to rebound!!


MONDAY, MAY 05, 2008 04:50 AM, CDT

"Did you hear that dad? They said the first lap was for the kids at Duke! That's me! Let's go!" And so Sam walked. 3/4 of the first lap of the Rainbow Walk of Heroes.

Day -10

So it begins. We check in at the hospital at 6am this morning for Sam's central line to be placed and life begins on unit 5200.

Sam's pain level is so low, I'm worried that he's going to be in alot of pain this afternoon following the procedure and over the next few days. Please pray that this is not the case. Please pray that there are no complications through this journey with the central line. No clogs, no infection around the site, no continued tenderness.


FRIDAY, MAY 02, 2008 05:24 AM, CDT

Sam will have his central line placed on Monday and be admitted to the 5200 unit at Duke. Tuesday the chemo will begin and the probable date of transplant should be May 14th.

Yesterday Sam had an MRI and CT scan done, both with contrast. It is gut wrenching watching Sam's reaction to needles and the fluid being injected through them-I'm not handling it well at all!! And of course obviously neither is Sam!

Today Dr. Prasod wants to visit with Sam for a bit and then we will head over for a follow up Nerve Conduction Study. When we were here a few weeks ago and had it done, Sam's levels were not even recording on the results so Dr. P wants to confirm them which will be done with just 1 or 2 "buzzes" - Anne & Jayne(our wonderful nurse coordinators) are going to make sure of that!

Rick's parents and one of his brothers are coming up today for the weekend along with Rick's middle son and girlfriend. Sam's good buddy Camp from back home will be in town this weekend.

Tomorrow is the Rainbow Walk of Heroes and I've created a "team" called Amazing Sam. If you would like to make a small donation in honor of Sam please click here - I just added our team this morning so I'm sure it won't be up on the team list yet so simply leave it at No Team and put Amazing Sam in the comments section.

Keep praying!


TUESDAY, APRIL 29, 2008 04:10 PM, CDT


We are going forth with the transplant. There really is no way of knowing whether Sam has this syndrome at this time. Their standard route would be to wait a few years and see what develops and of course we cannot do that with Sam.

Thank you everyone...... I'm breathing easier tonight.

TUESDAY, APRIL 29, 2008 05:42 AM, CDT

Colonoscopy and endoscopy this morning-we will find out the results today. There is nothing left in Sam after the magnesium citrate yesterday. After the 1:30am trip to the bathroom he drank some water which promptly came back up-thankfully it did not continue.

The blood draw yesterday was horrible. I have asked for the GFR to be postponed so that he doesn't have to have anymore blood drawn this week.

Please be sure and check out the beautiful video of Sam on our main page-I absolutely love it, it captures Sam completely:

No HHT's!


MONDAY, APRIL 28, 2008 05:38 AM, CDT

The 2 things on the schedule for today are bloodwork and magnesium citrate.

Tuesday brings the endoscopy and colonoscopy which Sam will be sedated for. We are tentatively scheduled to meet with a Geneticist later in the day. Wednesday Sam is scheduled for lung functions testing as well as a swallow study.

Thursday comes and Sam gets an MRI/MRA of the brain and a CT of the chest, abdomen and pelvis. Friday brings a glomerular filtration rate(GFR-a test to measure kidney function and another (much hated) nerve conduction study.

Saturday is the Rainbow of Heroes Walk. Have I ever mentioned how much Sam *loves* balloons? No HHT's Lord, no HHT's!

P.S.-a photo journal has been started:


SATURDAY, APRIL 26, 2008 05:27 AM, CDT

Sam was exhausted yesterday. Thursday really took a toll on him. We met with the pre-op lady who took Sam's history with anesthesia and gave us the do's and dont's for the central line on Monday. Then a really great gal got on the floor with Sam, laid Ernie on the table and she and Sam did everything to Ernie that Sam would be having done on Monday! Great folks at Duke I tell you!!

Rick and Sam headed over for an eye exam and I went up to Clinic and met with Dr. Prasad and Anne. Sam's eyes were dialated and he did not care for the sunglasses he had to wear on the way home! He then enjoyed a wonderful afternoon with his brother going from the Wii to the DS and back to the Wii 100 times over.

In my meeting with Dr. Prisod he went over the few questions I had and then we discussed Hereditary Hemorrhagic Telangictasia's(HHT's) alos known as Osler-Weber-Rendu Syndrome:

I've got it and Sam has a couple of suspicious areas that are a cause for concern. One blood test that has been done (which holds just a 65% "guarantee") came up negative for me and Sam this week-alot of good *that* did since we *know* I've got it! <insert big exhale here>

So, the new plan is-no central line on Monday, colonoscopy and endoscopy on Tuesday to check for any signs of the Osler-Weber-Rendu syndrome. The chances of them *not* being in there are definately in our favor. However, if he's got any we cannot proceed with the transplant at this time. <insert even bigger exhale here>

So the huge prayer this weekend which needs to flood the gates of heaven is no HHT's for Sam.


FRIDAY, APRIL 25, 2008 08:17 AM, CDT

I used to be such a good sleeper. It's been over a month now since I've had a good night's sleep.

Yesterday was a *long* day.

We ended the day with a tour of the 5200 unit-it's really starting to hit home as to what we are in for. There was a wonderful little boy in the activity room who showed Sam his central line and told him what it did. Sam asked him if it hurt and he said "No, would you like to touch it?" Sam politely declined.

Today is a short day, we have a Pre-Op screening consult for his central line placement on Monday, followed by an eye exam at 10:45.

The central line is being placed on Monday due to Sam's peripheral nerve system. He is extremely sensitive to touch and pain and we have a long week ahead of us this next week with multiple blood draws so that's the reason it's being placed early. I asked about starting him on Neurotin and should hear about that today. The Neurotin assists with the nerve pain.

Rick's oldest son (Bubba) is here for the weekend with his wife Ashley so Sam is in 7th heaven!

Keep praying for Sam!


THURSDAY, APRIL 24, 2008 05:55 AM, CDT

We made it to Durham. Rick drove the 9 hours here yesterday without an inch of room to spare in our Durango and Sam and I took an afternoon flight.

We hit the ground running today with labs to be drawn, virus swabs, chest xray, echocardiogram, dermatology exam and "education" session.

Please pray for Sam today!

THURSDAY, APRIL 17, 2008 05:12 AM, CDT

I have come to realize that while I have given you a good bit of information I have left out a ton. We leave Wednesday for Durham, NC. We will be there 4-6-8 months. We are staying in a furnished apartment about 10 minutes from Duke. I will have a way for you to get our mailing address if you’d like it. Give me until tomorrow for that!

!Scratch that! E-mail my friend Chantelle and she will give it to you:

When we leave on Wednesday, Sam will have about 10 days of preliminary testings on an outpatient basis and will have his Hickman catheter put in:

On May 5th(tentatively) he will be admitted and begin a 9 day course of chemotherapy. He will then receive the umbilical cord stem cell transplant. There are several factors involved in determing how long Sam will be in the hospital. Could be 30 days, could be longer. Once discharged, there will be daily appointments for continuing care, platelet infusions, catheter care etc. etc. etc.

Today on April 17th we will celebrate Sam’s 7th birthday which is officially May 17th. Sam has been talking about a *surprise* birthday party for several months now-however in the past few weeks has stated that a surprise party may scare him and he does not want that! So… we will be having a “quiet surprise” bowling party for Sam at 4pm this afternoon at Bellair Lanes! He will be beyond thrilled!


TUESDAY, APRIL 15, 2008 05:34 AM, CDT

The word is slowly beginning to spread about this monster of a disease-take the time to watch this video:,0,1836601.story

We spent a wonderful day at SeaWorld yesterday.

Several people have asked about the Stem Cell Transplant.


Newborn infants no longer need their umbilical cords, so they have traditionally been discarded as a by-product of the birth process. In recent years, however, the multipotent-stem-cell-rich blood found in the umbilical cord has proven useful in treating the same types of health problems as those treated using bone marrow stem cells and PBSCs.

Umbilical cord blood stem cell transplants are less prone to rejection than either bone marrow or peripheral blood stem cells. This is probably because the cells have not yet developed the features that can be recognized and attacked by the recipient's immune system. Also, because umbilical cord blood lacks well-developed immune cells, there is less chance that the transplanted cells will attack the recipient's body, a problem called graft versus host disease.

Both the versatility and availability of umbilical cord blood stem cells makes them a potent resource for transplant therapies.


MONDAY, APRIL 14, 2008 05:27 AM, CDT

We had a wonderful family weekend:

All the kids came home, Sam got a WII, extended family and friends came for visits, meals were provided in abundance by the best group of gals you ever did want to meet :) and a photographer came to the house yesterday afternoon for a family photo session.

We simply cannot thank you enough for the calls, the e-mails, the posts and the prayers....


FRIDAY, APRIL 11, 2008 06:21 AM, CDT

It's Friday, we are home. We have made the decision to go forth with the transplant for Sam. It was not an easy decision but it is most definately the right one for our family. We feel at peace with our decision which gives us hope for our future with Sam. The road ahead will be far from easy. But the prayers and support from family and friends will help us through.

We will be moving into our apartment in NC on Wednesday April 23rd and plan to be there at least 6 months.

Please pray for Sam.

Tuesday April 8, 2008

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.

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.

Wednesday March 26, 2008

-We simply cannot believe that this is happening to our precious son Sam and we know that he is just as precious to many of you as he is to us.

The radiologist summation is "Diffuse white matter disease. Suspect metachromatic leukodystrophy." (MLD) Our neurologist confirmed yesterday that it is in fact a leukodystrophy, however, while an MRI can indeed confirm leukodystrophy it cannot determine which one it is. “Leukodystrophy derives from two Greek words; "leuko" means white, referring to the white matter (myelin) of the nervous system, and "dystrophy" means abnormal growth or development.”

There is a strong possibility that a Bone Marrow Transplant will benefit Sam depending on which form of this he has. The one positive light is the fact that Sam’s intellect has not been affected at all yet and if we can get the Bone Marrow Transplant done quickly it will drastically slow the progression. In many of the leukodystrophies I’m reading about the mind is one of the first things affected.

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