Birthday Wishes....

Happy Birthday Mom!!!

We all love you soooooooooo much!!!

Day 5 Update....Last Day in El Paso & Juarez

Arrived at clinic about 11:00 Am. Immediately went into room for IV. Jan got amino acid IV. Dr Karam then injected stem cells into IV. About 1 hour later Jan went into Dr. Saenz's office. A brilliant plastic surgeon. He injects growth hormones and stem cells into throat, neck abdomen, and head. This was difficult on Jan, but as always, she was a trooper. Dr. Karam held her hand and I tried not to worry to much. Dr. Karam said that the hair sample he took of Jan showed that the Cadmium is not recent. Jan had been exposed years earlier than now. He is using his contacts to see if the exposure and source can be defined.


That was the end of the day. Returned to Double Tree. Spoke with Dr. Karam. He is going to set up a conference call with us, Dr. Cohn, the CDC, and his heavy metal specialists at Emory. He will advise us when that will take place, hopefully next week pending everyone's schedule.

We said a heartfelt goodbye to Dr. Karam. He was very appreciative of our thanks. I have said this before, he is a wonderful Dr. He cares deeply about Jan and our family and is doing more than what may be imaginable to help us all.

Paul J. Metzger

Day 4 Update from Dad...

Arrived at clinic about 11:00 AM. Mom & Jamie went right in for stem cell injections and IV of amino acids and stem cells. BTW, Mom is doing GREAT. After that, Mom & I went into the hyperbaric chamber. Mom is having difficulty relieving the pressure in her ears as we travel down in atmospheres. It is painful for her, but she is a trooper. We were in for about 1 1/2 hrs total time. After that we were done for the day.


Dr. Karam asked us all if we liked steak. Obvious answer from all. We left his office, drove about 3 blocks and proceeded to enter a REAL Mexican eatery. Mom & Jamie had a rib eye, and I had a fillet. Not a morsel was left. Beef in Latin America is great, I know from my days in Honduras. We also had avocado, refried beans, chips, salsa, and pork skin rinds. Jamie's comment, we finally had great authentic Mexican food, and it was.

We waddled out of the restaurant and proceeded to the border crossing. We had the longest wait so far, about 1hr. 15 min. The girls decided they wanted to shop (real surprise). Dr. Karam dropped us off at Saddle Blanket of El Paso. Got here at 4:45 and found out they close at 5:00. Mom & J shopped fast and out we went. Cab back to Double Tree.

Really a good day except for the ear issue with Mom. I am not going to let her in the hyperbaric tomorrow. She needs some rest before we get on the plane Saturday.
My LOVE to all,   Paul J. Metzger

Day 3 Update from Jamie

Today we went in to Juarez. Not bad...got in pretty fast.

 

11am- An IV is started on my mom and an infusion of growth factors, amino acids and proteins.

11:43am-Dr Karam begins to push in moms IV about 13 million stem cells (15 mL). It burned some but was done by 11:50am and the burning subsided shortly after.

11:58am- Dr Karam injects about 300,000 stem cells each injection into the area above her patella (knee cap) and one on either side of her calves into the myotendonal junctions. Those all hurt and burned but again, shortly after subsided.

Shortly after her infusion finished. She felt lightheaded as they expected but overall still doing great.

Mom and Dad then went into the hyperbaric chamber for a little over an hour. All went ok, just hurt moms ear (you know that terrible feeling you get when the plane is descending and nothing gets rid of it...that is the one feeling she can't get rid of right now).

After that I met mom with Dr Karam, Dr Saenz, and another doctor and I held moms hand as Dr. Saenz injected mom with growth hormones, growth factors and some other factors (forgot the name) into her throat, pituitary, all along her head, near her belly button and lower abdomen. It took about 20 minutes. Dr Saenz was amazing with the needle. Mom handled it all with a couple "ow's" and than a "that's it?"...so it went well.

 

We hopped in the car and all came back leaving the clinic aroudn 2:30pm. We are back at the hotel, mom is resting and we will venture out again for some Mexican food...I am determined to have good Mexican food other than at the hotel (which is really good).

 

That's it here on our front. Tomorrow more stem cells in the legs then hyperbaric...that should be it. We will talk tomorrow.

 

Love
J

Day 3 Photos

Quality time in the Hyperbaric Chamber

The first stem cells going in...

Waiting...I think Dad likes the scrubs!

The chamber!

Day 2 Update from Jamie

Day 2...Mom with Dr. Karam and Jamie

Today has been an informative day. We traveled about 10 minutes from the hotel to Dr. Karams office in New Mexico, where he discussed with us the results of Mom's muscle biopsy. He showed us the changes in moms cells that are different from "normal cells". He also showed us in the cells how much cadmium is in her body...a lot! (Cadmuim is a toxic element, and we have no idea why Mom has so much in her.)  Dr. Karam is going to be sending Mom's samples to Emory University to be examined by toxic metal experts who will hopefully identify where mom may have gotten this type of exposure and advise her as to treatment. They are also going to test Mom and Dad's hair tomorrow. Hair samples can help determine if the exposure has been recent since it holds information for about 2 years.  If it is present in Dad as well, it will tell us that it is a recent, possibly ongoing exposure (ie. something in their house or water).  If it is not present in Dad, it can be assumed that her exposure was years ago. Did these metals cause ALS or ALS cause the metal toxicity to be expressed??   We don't know. Either way this is very mysterious and Dr. Karam is very interested in getting to the bottom of this. That being said...our goal right now is to slow the progression of this disease by this stem cell therapy and removing the metals by chelation when Mom gets home. Tomorrow, we head back to Juarez. There I will go into the treatment room with mom and a couple of doctors while they poke and prod at mom and together decide where to inject these stem cells. The injections should take about 45 minutes. Then back in the hyperbaric chamber where my mom and dad can spend some quality time together...wink wink! LOL
Please pray for a painless day for my mother tomorrow and a steady hand for the doctors that will be working with her. Also pray for wisdom for these doctors as they investigate the cause of the heavy metals in Mom and determine her future treatments.
Love
Jamie

Day 1 Update from Jamie...

Day 1-
Well I am here...in sunny, very sunny El Paso. Mom and Dad were already picked up by Dr Karam and taken into Mexico when I arrived, so I hung out at the hotel and waited for them. They left about 1030am and came back by 4pm. While there, mom had muscle biopsy from her arm and calve as well as 5 more vials of blood taken! She handled it like a champ. She recieved some more nutrients via IV, and then my mom and dad camped out in the hyperbaric chamber for about an hour with another father and child as they all watched Shrek and were taken down 4 atmospheres. Sounds deep to me!! They spent some time talking with Dr. Karam about Mom. He is quite interested in why these heavy metals in her system are so high. It's as if she was sitting in a furnace while cadmium, lead and mercury were being melted for hours and all the time while she absorbed all these metals in her system. Where did all this come from is the mystery question. We don't know yet, but Dr Karam has some ideas he wants to share with us tomorrow. That really was it for today. We finished off the evening with quesadillas and enchiladas. Tomorrow, we will head to Mexico and get to spend some personal time with Dr Karam and talk about my mom and what he is thinking. My mom and dad once again felt very comfortable with Dr Karam and have a sincere sense of trust with him. Thank you all for your prayers and love. It is truly felt here.
Lots of love,
Jamie

Mexican Comfort Foods...

Mom and Dad are in El Paso this morning, heading across the border into Mexico later today.  It will be the first stamp on their new passports, so to celebrate, I thought I'd share a couple of my favorite Mexican comfort foods.  The Mexican clam dip is one that Casey or Jamie found on www.epicurious.com, our favorite food website, for Mom's 50th Birthday celebration in Boone, nine years ago this week in fact.  It was so good! Everyone loved it, and it has since become a family staple.  The second one, Sopapilla Cheesecake, is a new one from my friend, Rachel.  I made it for everyone when we were in Miami last month, and let's just say it was a huge hit! Uncles Dave and Mike were scraping the crumbs from the pan! 

Mexican Clam Dip
12 oz. cream cheese, room temperature
3/4 (6 oz.) cup salsa verde
1 40z. can diced green chilies
1/2 cup chopped fresh cilantro
3 6.5oz. cans chopped clams, drained well
Fritos for dipping (Yes, it must be Fritos, not Tostitos. Trust me.)
Beat cream cheese till smooth. Add the salsa, chilies, and cilantro. Add the clams and mix well.  Add salt and pepper and more cilantro to taste. Transfer to an ovenproof dish. Bake at 350 till bubbly, about 30 minutes.

Sopapilla Cheesecake
2 (8 ounce) packages cream cheese, softened
1 cup white sugar
1 teaspoon vanilla extract
2 (8 ounce) cans refrigerated crescent rolls
3/4 cup white sugar
1 teaspoon ground cinnamon
1/2 cup butter, room temperature
1/4 cup honey
Preheat an oven to 350 degrees. Prepare a 9x13 inch baking dish with cooking spray. Beat the cream cheese with 1 cup of sugar and the vanilla extract in a bowl until smooth. Unroll the cans of crescent roll dough, and use a rolling pin to shape each piece into 9x13 inch rectangles. Press one piece into the bottom of a 9x13 inch baking dish. Evenly spread the cream cheese mixture into the baking dish, then cover with the remaining piece of crescent dough. Stir together 3/4 cup of sugar, cinnamon, and butter. Dot the mixture over the top of the cheesecake.  Bake in the preheated oven until the crescent dough has puffed and turned golden brown, about 30 minutes. Remove from the oven and drizzle with honey. Cool completely in the pan before cutting, or serve it hot and gooey!

Enjoy!

Fighting Part III...More about Mexico

Rob took the kids out for a while, so I'd better keep writing while the house is quiet! 
We all had lots of questions and concerns about this stem cell treatment as I'm sure you do too.  Feel free to ask questions if I don't address them here. While we are all far from experts on the subject, we have learned quite a bit and I think between me and Jamie we can maybe answer them! 
Why stem cells?
The future in diseases like ALS, Parkinson's, MS, and paralysis seems to be in stem cells.  Dr. Karam was quick to point out how mysterious it all still is, even to doctors like himself. He said no one really understands why the stem cells do "good things" in the body and not bad, but they do. He likened it to prayer...He can't explain how and why prayer helps people get better sometimes, but he has seen it happen many times. (I have some ideas on how and why prayer works, but I'll save it for another post!)  They seem to have the most success when the patients own cells are used, as opposed to donor cells or embryonic cells.
Why Mexico?
A big question for all of us was why Mexico?  Dr. Karam explained to us that because our government makes it so difficult to get FDA approval for a study like this and ties their hands with parameters which limit who they can help, they have taken this to Mexico. There are none of those regulations there, and they can work freely on whomever they wish.  While those regulations are designed to protect people, I'm sure, people like Mom with a disease like this don't have time for bureaucratic red tape. So off to Mexico it is!
Is this legitimate and safe?
Dr. Karam is a real doctor who works with other read doctors and real nurses. This research project is through the University of Juarez. The clinic in Juarez is as state of the art facility as any here in the states. It is barely across the border and far from the crime and such we have heard of in the news lately.  There have been no adverse reactions experienced by any of the patients who have received this treatment.
How successful has this been for other patients?
Dr. Karam said they have about an 80% rate of success.  While that sounds great, the results vary greatly from patient to patient.  Success for one person may not look the same as that in another person.

Prayer Requests for this Week...

• Pray for peace for Mom. She is so nervous about this, particularly about the injections. She calls it the "torture sessions"!
• Pray that it all goes well and is not as awful as Mom fears.
• Pray for safety as they fly to and from El Paso (Jamie flies in tomorrow), and also as they drive into Mexico on Wednesday through Friday.
• Pray for success! Pray that the cells go where they need to go and do what they need to do to reverse Mom's symptoms. Pray that we see good results from this that are long lasting, even permanent.
• Pray for wisdom for Dr. Karam and his team, and that the work done with Mom this week will serve to advance their research and help more people in the future!
• Pray for strength for Dad and Jamie as they support Mom this week. 

Look for updates from El Paso and Juarez later this week!

Fighting Part II...South of the Border

Sorry for the delay in this one!  As I type, my Mom and Dad have just landed in El Paso, Texas, where they were picked up from the airport by Dr. David Karam.  Talks of this trip began way back in April, not long after Mom received the diagnosis of ALS.  My sister, Jamie, a pediatric nurse in Miami, was working at the time on getting her Master's degree through FIU. (She just finished and is now a Nurse Practitioner...Congratulations, James!!!)  When she shared Mom's news with the doctor she was training under, the doctor immediately said, "There's someone I want you to talk to." Within hours, Jamie was on the phone with Dr. David Karam, a neurosurgeon working in El Paso, Texas doing experimental stem cell treatments on patients with neuromuscular diseases and paralysis, primarily ALS patients!  It was the first of several conversations with Dr. Karam where he described in detail his research, the treatments, and the possibilities.  In July when we were all in Miami, I along with Mom, Dad, Jamie, Casey, Uncle Dave and Aunt Laurie spent close to two hours on a conference call with Dr. Karam where we learned more about his research and asked our many questions.  Mom and Jamie were able to meet with Dr. Karam in Miami a few days later.  After much talk, thought, and prayer, Mom decided to go forward with this treatment.  I'll do my best to explain it to you here...
Tomorrow, Mom will be evaluated by Dr. Karam and the team of doctors who work with him.  They will harvest stem cells from Mom, from her blood, fat, muscle, and/or bone marrow. Hopefully, the first three will produce enough good cells for them to work with, thus avoiding the more invasive bone marrow procedure.  They will send Mom's cells to a lab in Juarez, Mexico where they will grow over 2 days to a number over 20 million.  On Wednesday, Thursday and Friday, Mom, Dad and Jamie will be driven about four blocks across the border to the clinic in Juarez where Dr. Karam and his team work.  Mom will have her multiplied stem cells put back into her body, some intraveinously, some by site-specific injections which target the areas where Mom's muscles are deteriorating.  She will receive injections in her mouth and throat to help her speech and swallowing, her feet to help her mobility, and other areas that are being or will be affected by the degenerative nature of this disease.  She will receive the stem cells, and then spend time in a hyperbaric chamber, which will flood her body with oxygen and help the stem cells get where they are going.  They will then be brought back to El Paso Doubletree to spend the night. So much is still unknown about this disease, and while this is not a cure by a long shot, the stem cells do seem to cause a slowing of the disease progression and a temporary reversal of its symptoms in many of the patients who have received this treatment.  I'll write more later and try to answer some of the questions you probably have, and Jamie will be blogging from El Paso this week, keeping us all up to date on how the procedures are going!

From Aunt Laurie...

I have had a full week to say the least. My house has never had so much activity, with all 4 of my kids home, as well as Carol's kids, and they don't come home alone! Of course they all want to be together. I think at one point I had 10 kids sleeping in every corner of my house and I loved every minute of it! As always when the kids are home, and this time was no different, they ask, "Can we go to Aunt Janet's"? So at the beginning of the week we spent an evening visiting with Aunt Janet and Uncle Paul. We sat on the deck, laughed a lot, and just enjoyed being there. Carol and I both know that our kids particularly love Aunt Janet's house because it's just nicer than ours, and we all know Aunt Janet usually feeds them better!  Now today, Saturday the kids were all taking off and asked, "Can we go see Aunt Janet before we leave"? Janet and Paul are leave tomorrow for Mexico where Janet is to receive an experimental stem cell treatment. I will leave the details of this for Shannon to fill in on her next blog as she is a much a better writer than I, but today was a different visit for these kids. They wanted to pray for their Aunt Janet. What a precious moment to see these kids surround their Aunt Janet and pray Gods protection, peace, and healing on her. And one by one each of them embraced her, comforting and being comforted. They will forever be touched by her. Laurie Martin