Dear Friends & Family,
If we are home....our door is open. We always leave our front door wide open. We do this because we love fresh air. Every blind in our house gets opened each morning along with several or sometimes all of our windows. We like to feel a breeze through the house. The other reason the door is open is to welcome our friends inside. We love to have friends, kids and neighbors stop by for a visit. We love to hear kids playing in the front yard or splashing in the pool. Curt enjoys hanging out in the garage with neighbors Bob & Larry or anyone else who may stop by. We always have plenty of water, sodas and beer in the fridge. We have those awesome cashews from Costco in the garage snack cupboard along with goldfish crackers for the kids. We love to entertain on the weekends. The menu is always casual and our friends always bring great dishes to share. Curt enjoys grilling sausage, steak and ribs while visiting with friends. Good music, good food, and good friends. We are thankful to have the greatest friends in the world.
Our friendships have grown deeper since Curt's diagnosis. Everyone is sharing this journey and doing what they can for our family. The Monday night meals have been awesome. What a stress relief to come home from work and not have to worry about cooking. More than that, we feel so honored that people do this for our family. It has been a true blessing and we feel the love! Curt has had so, so, so many friends over the years. Although we tend to grow apart from some friends due to work, kids and logistics; Curt has had many friends come back into his life and they have been spending a lot of time together. He has enjoyed talking about the old times while creating new memories. On the "desert guys trip" in January there were many friends from different facets of Curt's life. Curt enjoyed seeing them all get to know each other. Some shared an interest in guns while others connected over dirt bikes or Volkswagens. At the Sunset Prayer service in March we were totally overwhelmed by how many people came to pray and to share such a special evening with us. We are truly blessed.
It is hard to put into words the love that we feel. Thank you for being there for us. Thank you for praying for us. Thank you for being our friends.
Cindy, Curt, Clarissa, Cayden & Corbin
On December 7, 1941 Pearl Harbor was attacked and 2,402 people died. On December 7, 1995 Curt's Dad; Don Ziemke, died of a sudden heart attack. On December 7, 2009 a second doctor confirmed Curt's diagnosis of ALS.
Hearing it for the second time was like a second blow to the stomach. The first blow; hurts, makes you stumble and takes your breath away. The second blow; knocks you to the ground, doesn't stop hurting and takes away your ability to breathe deeply forever. It has been over 4 months since the first diagnosis and the pain only gets worse. Every decision we make is based on time. The clock is ticking. Every one's clock is ticking, but ours is attached to a time bomb. We have no idea when it will go off....months or years? Meanwhile, each day is a gift. Everyone always says to live for today and yet nobody does it. It is hard to do until you have a deadline; then you will live for today. I have learned that if I am thinking about tomorrow, I am not living for today. It is easy now to live for today; it is too painful to think about the future.
On December 7, 2009 we left Dr. DiStasio's Harbor City office after getting the second confirmed diagnosis. The Doctor told us there was nothing that could be done for Curt. He said to "go home, prepare Curt's Advance Directive, your Will, get your finances in order and travel now, because the disease can progress rapidly, so do all you want to do soon".
We left his 4th floor office and paused on the balcony that led to the stairs. It had been dark and cloudy and raining all day. But now the sun was breaking through the scattered clouds revealing bits of blue sky. We hugged and cried in each other's arms, trembling and shaking, not caring that people were coming and going all around us. We took a moment and looked at the view of Downtown Los Angeles and the mountains. Off in the distance Curt noticed a rainbow. The rainbow became brighter as we were looking at it. It became the brightest rainbow ever. The kind were you could see each distinct color. Was God telling us something? Did it mean that everything was going to be alright? Did it mean Curt would not die? Did it mean there would be a miracle? Was it a sign of Hope? Or was it just a random rainbow on a rainy day? I think about that rainbow often. I still wonder what it meant.
As I see the disease progress a little more each day and watch Curt struggle, I hurt. I hurt for him and I hurt for me and I hurt for the kids. I hurt for his mom, I hurt for my parents, I hurt for all his friends, I hurt for his brother and his sister. The hurt is heavy, my heart hurts and I can't breathe. I need strength and prayer. I need to breathe. Pray for Curt, he is also in emotional pain. He is doing his best to be strong for us, but wow, how does he do it? Thank you for caring. Thank you for praying.
Dear Friends & Family,
The beach has always been an important part of our lives. When Curt was a child, his Dad would come home from work and announce "after dinner we are going to the beach." Curt said the table was set, dinner was finished, cleaned up and all 5 kids were out the door and in the car in minutes. It was on those evenings that Curt's Dad taught him to body surf, a sport he still enjoys. Our high school summers were spent at 2nd Street in Hermosa Beach. Curt and his friends would sit near the wall which separated the sand from The Strand, which was the place to "be" and "be seen". My friends and I would sit nearer to the ocean since we spent a lot of time in the water. Our summer nights were spent cruising Hermosa, Redondo and Torrance Beaches. When we were in our 20's we would all cruise The Esplanade in Redondo and park in time to watch the sunset. Watching the sunset was the beginning of most of our evenings.
On Friday, March 26th, 2010, over 100 great friends and family members joined us at Torrance Beach for prayer at sunset. This was the beginning of our journey to Mexico. It was overwhelming to see so many people come out to support and pray for Curt.
Everyone joined in a circle and after a short welcome by me and Ray Arevalo; there were eight specific prayers (travel safety, healing, the doctor, etc.) by eight different friends or family members. After the last prayer, we all turned to watch the sunset. The timing was perfect, as we turned around the sun just began to touch the ocean and we all stood silently until it disappeared below the horizon. We thanked everyone for coming and then got together for a group photo (attached). This photo means so much to us; it is on our refrigerator and is a daily reminder of all the people who are praying for us. We know that for everyone in the photo there were many more people who were with us that night in prayer and are praying daily.
We left the beach and gathered at my parent’s home for dinner and socializing. The food was catered by Paradise and super yummy! The party was fun and lively. It was great to get to visit with so many special friends. Curt & I are so thankful to have so many loving and caring people in our lives. Thank you Dad & Mom for throwing such a great party. Mom - you are awesome to suggest inviting all 160 (+families) of our "email update" group. I loved when you said "You cannot limit who will come and pray for Curt, invite them all!" The night was a dream and vision come true. After we all prayed together at the beach I had an even deeper peace about going to Mexico. What a night to remember!
We had a great time in Santa Cruz this past weekend. We visited Cannery Row, The Monterrey Bay Aquarium, The 17 Mile Drive and The Boardwalk in Santa Cruz. We spent our time at the campground cooking outdoors and sitting by the fire. It was great to be with The Beedy Family, my parents, my cousins Erik & Alyson and nephews Dominic & Ethan. Clarissa & Cayden were awesome on the trip; always there to help Curt with whatever needed to be done. Corbin was busy exploring the campground and all it had to offer. The drive home was intense; very windy, Curt had to really work hard driving our motor home through the wind for the entire 8 hour drive. He spent most of Monday recovering from the busy weekend. It is hard to see his health so fragile and the way he gets tired so quickly. Our motor home trips may be coming to an end.
It has been 2 weeks since he received treatment in Mexico. We have not seen any improvement in his health (doctor says it will take 2 months). In fact, he is still deteriorating. He is struggling with his speech and sometimes gives up talking mid story because the words won't come out as quickly as his brain is processing them. He had a hard time getting in and out of the motor home, the stairs are steep and there is not much to hold onto. His walking is staggered and his legs are shaky. He never complains. I know that he is completely frustrated with his body, but he makes the best of it. He is and will always be my hero!
Thank you for continuing to pray.
Cindy, Curt, Clarissa, Cayden & Corbin
Sunday 3-29-2010, actually Monday 2:30 am
Mike & Melissa Pond's Home
We spent Sunday afternoon at home with the kids, swimming and laying in the sun, knowing that we should be packing for our trip to Mexico. I wasn't in a hurry to pack. Although I was looking forward to Curt receiving treatment in Mexico, I wasn't anxious to leave the kids and our comfortable home. We finally left the pool and went inside to pack. Mom and Dad came, ready to spend the next few days with the kids. We said our goodbyes and I felt sad leaving, knowing that the kids were anxious about our trip. They were all a little nervous about our travel plans and not being with their dad while he is receiving treatment in another country.
Our neighbor, Bob Knapp picked us up to take us to the airport. Little did we know that he arranged for all the neighbors to come outside their homes and wave us goodbye. We drove down Woodstock Road slowly as each family stood at the curb and waved. Some had big banners wishing Curt luck, some had tears, one family handed us a plate of fresh baked warm brownies, Mark & Kelly were doing the wave (standing up from their chairs and waving their arms) as we drove by. Many came to the car and hugged Curt through the window. We were deeply touched.
We picked up Ray and Margie from their home. Ray came out carrying a book entitled Mexico Travelers Guide. I got a little nervous, thinking, "wait a minute, you are going to have to refer to a book for help?" I thought they were the experienced ones! On the way to the airport Margie was applying mascara without a mirror. That was when I knew it would be a good trip and I would learn a lot from them. We got to the airport and checked in. Curt's cousin's husband Doug Rae met us there. He is the Assistant Federal Security Director of the Transportation Security Administration. He is in charge of the 2500 TSA employees at LAX. He and Joe (one of his managers) whisked us through security. On the way to the gate he told us all about the TSA and the extensive ways they work to protect travelers. Thank you Doug for taking the time to meet us at the airport to make sure we got our trip off to a good start.
The flight was fine. Curt took an anti-anxiety pill which helped him to relax. He said it was actually a nice trip. YAY! Mike, Melissa, Noelle and Anna Kate greeted us at the airport in Dallas at 11:30 pm. We were thankful the girls are night owls so we could visit with them! It felt so good to be with The Pond Family, how awesome that our trip worked out with an overnight layover in Dallas. That was a gift! We stopped at Whataburger for a taste of Texas and to enjoy their awesome ketchup. The workers thought we were crazy taking pictures and then taking so long to figure out what we wanted to order. Oh well!
Mike & Melissa drove us through their exclusive neighborhood of King's Mill. I have never seen such big, custom and breathtakingly beautiful homes (other than Beverly Hills). They built their home last year and moved in in December. We are so happy to finally get to see it. You guys have made it at such a young age, we are so proud of you and how hard you have worked to save for your custom dream home. Mike & Melissa's home is absolutely gorgeous. It is huge, with tons of custom cabinetry, custom details and yet, warm and cozy. You guys did a great job designing and decorating your first home. Thanks for letting us have your awesome master bedroom for the night. Ray & Margie said your guest bedroom felt like a luxury hotel room. Melissa presented Curt with her Milagros Cross from Spain. She read a letter she wrote to Curt and shared the history of the cross. Thank you Melissa for giving Curt such a special gift. We will cherish it! We went to bed at 2:30am and got up at 6:00am to leave for the airport early Monday morning. Thank you Ponds for the great visit and Southern Hospitality!
Monday Night 3-30-2010 8:00 pm
El Presidente Hotel
The plane ride from Dallas to Monterrey was an hour and 20 min. Curt did great. No anti-anxiety pills needed! YAY! We had 3 hours of sleep last night at Mike & Melissa's. We wanted to visit with them and sleep seemed unimportant at the time. Although we are feeling the pain now. The taxi ride from the airport to Margie's aunt & uncle's home was CRAZY! When the driver would see pedestrians in the road he would seem to speed up and head towards them. I was in the back seat between Curt & Margie totally freaking out. Somehow we made it to the house without killing anyone. I was so relieved to get out of that Taxi. Margie's relatives are all so nice. Each of them greeted us with a hug and a kiss on the cheek. We sat and visited for a few hours. It was fun to listen to them all speak in Spanish. I could make out most of the conversations thanks to four years of high school Spanish and her Aunt's lively gestures. She is one crazy lady, full of passion and love. Her husband, Margie's uncle, was treated by Dr. Ramirez for Dementia over 2 years ago. He said that he lost his mind one day and didn't know his family or where he was. His regular doctor gave him 2-3 months to live. Then, 23 days after being treated by Dr. Ramirez he had 80% of his memory back. Today he is very sharp and healthy.
We left the home and after a quick stop for a late lunch at Carl's Jr., we headed to the office of Dr. Francisco Gerardo Flores Ramirez, Neurologist, for our 5:00 appointment. Dr. Ramirez works at the hospital during the day and sees patients at his own practice in the evenings. The receptionist (his wife) greeted us and we sat in the simple and plain waiting room to meet Dr. Ramirez. The walls are dingy white and not a single picture or decoration was to be found. Sunlight filled the room. We had been told that the doctor would treat him today with the cells, I was feeling very anxious to find out more information, and hopefully get Curt on his way to healing. Curt has been quiet and kind of "out of it" since we left home yesterday. He hadn't slept well the last few night and then with all these travels by plane, taxi and mini van, I think he is somewhat overwhelmed.
Dr. Ramirez called us in, Margie came in to translate for us. The Doctor greeted us warmly as we entered his simple office/exam room. We talked with him for over an hour. He read Curt's medical records that I had brought. He asked a lot of questions. He asked all the right questions, things we were asked by Doctors in the states. I knew he knew what he was doing by the questions he asked. It was comforting to have Margie by my side, translating. She worked so hard to get all the information worded correctly for me. Medical terminology is not the easiest thing to translate. At one point she struggled to explain what Curt did for a living. Since I had experience designing ads for the Spanish Yellow Pages for our company, I had knowledge of Spanish words used in our industry. I told the doctor in Spanish what Curt did, and he and Margie had a good laugh that I knew the words.
Curt sat quietly most of the time, only answering questions that were asked of him directly. I am on the edge of my seat still trying to figure out exactly what he is going to give Curt. I thought it was Stem Cells. The doctor tells us it is the DNA, taken from cells and biochemically manufactured. We asked what kind of cells and he said human cells. I asked "stem cells" he said "no". We went around and around, I just didn't get what he was explaining, I had not come across anything that sounded like that in all my research. I was confused but trusted the doctor knew what he was doing and the fact that he treated Margie's uncle with great results helped ease my concern. The doctor said to come back tomorrow at 11:30 for the treatment. I left the office praying and have not stopped since. I need to research Biochemically Manufactured DNA, but my mind is so very tired, I am barely functioning on 3 hours of sleep. I just need to go to bed and pray. God brought us here. Everything with this trip fell into place, last minute, it all worked out. We are here for a reason, I am not going to research, what would it change at this point. I just have to believe that this is meant to be.
We are on the Club Level of the El Presidente, Intercontinental Hotel. The rooms were price so reasonably we could justify stepping it up a bit. Besides, like I have said before, I want all of Curt's days to be Perfect! We have to insert our room key in the elevator to get to this level (pretty cool!). There is a buffet of snacks and drinks, as well as personal service available at all times. Our room has the hugest balcony ever. The view of the mountains is incredible. Monterrey is the second largest city in Mexico and it is surrounded by majestic mountains. The lights at night are beautiful. The moon is full. The air is warm. There could be nothing more perfect about sharing the view from the balcony with Curt. Except that I wish his body was stronger and his muscles would calm from the twitching. I am hopeful that the treatment tomorrow will begin to heal his body and that we will have many more nights like tonight. We crawled into bed at 9:00 and quickly fell asleep.
Tuesday Night 3-30-2010 actually Wednesday 1:00 am
El Presidente Hotel
Little did we know that after we went to bed, Ray & Margie were picked up from the hotel by her cousins and went back to her family home to visit with more relatives. They were out until 2:00 in the morning. They are so crazy! I have no idea where they found energy on so little sleep the night before. During our trip, Ray has been so helpful with directions, taxis, pesos and whatever else is needed. Margie has been right there for us, translating, making us comfortable with her Spanish speaking relatives, and keeping us all relaxed. Ray has been to every convenience store we pass, buying me bottled water. Everyone here drinks Coca Cola, it is hard to find bottled water. I crave it constantly, so Ray has been a trooper keeping me supplied with water bottles. We enjoyed the breakfast buffet this morning which was included with our room. I think we are the only people on this floor of this hotel. The Club Level Lobby is huge, with walls of windows looking out to the mountains and we have only seen one other person the whole time we have been here. They have a full staff and great service, just no customers. Oh well, good for us!
Today is the day. Curt is super quiet. He has been since we left home. I know he is nervous and there is not much I can say. I hold his hand and try to send thoughts of peace through him. We have always said we have "uni-mind". We think the same thoughts. It happens all the time that we both begin to speak at the same time and we say the say things. Because of this, we don't have to talk today, we only need to feel each other's thoughts. I am thinking calm and positive thoughts.
Margie's Aunt and Cousin pick us up from the hotel and take us to Dr. Ramirez's office. We walk down the long plain hallway to the waiting area. After a few minutes we are told to go into the Doctor's office. Margie & Curt assume the same seats we were in last night. I glance over at the exam "cot" and notice a plastic bottle hanging from a shoestring on a nail in the wall. I realize this is the bottle of DNA cells Curt will receive. The bottle is unmarked and filled with clear liquid. The Doctor asks if we got good rest last night and we answered yes. As he is checking his email, he tells us of his trip to Canada in a few days and then to Chile. He travels the world speaking at conventions. I am once again reassured that this Doctor knows what he is doing. He asks Curt to lie on the exam table/cot. He pulls a plastic bucket, the kind you use to wash your car, over near the cot and takes out the packaged needles and i.v. lines he will be using on Curt. He inserts the i.v. into Curt's left forearm and the drip begins. The drip of life.....the drip of healing....the drip of our future...the drip of strength...I pray....I am sure Margie is praying. Dr. Ramirez sits over Curt while the drip continues. I kneel beside Curt for a few minutes, I want to be close to him and the drip. I want to breathe life, health, and prayers into the drip...into Curt. Our future is hanging from a shoestring, by a nail, in a plastic bottle.
Margie & I share some silent tears, being careful to not be noticed by Curt. I want him to see me strong and positive. Halfway into the drip, a peaceful wave of calm entered the room. I asked Margie to ask the doctor if I could take pictures. Curt told the Doctor I was paparazzi and they all laughed. I took photos of the bottle, the shoestring, and the nail. I took photos of the smile on Curt's face as he received hope for a future. I took a picture of the Doctor's leather satchel. I took a picture of the EKG machine, which looked really old and was the only piece of equipment in the room. I took a picture of his large desk and the bookcase stacked with books. One book in particular caught my eye, Curing Multiple Sclerosis, I thought of my mom and wondered if he could cure her. I later asked him and after he asked me a half a dozen questions, he said the regime my mom was currently on was the best treatment for her.
Throughout the entire 40 minutes of the i.v. drip, Doctor Ramirez never left Curt's side. He sat over him, touching his arm, checking the i.v., administering care. When the bottle was empty Curt laid there for awhile as the Doctor gave us instructions for the next step. He said to call him in 3 weeks, and then again in 5 weeks. Based on what is discussed during those calls, he may want to see and treat Curt again in June. He said there will be no side effects from the treatment. He said the progression of the disease should stop and we will see that within 2 months. He said the muscle twitching will not stop because that is caused by damage already done to his body. I am not sure how we will know that the treatment is working. How will we see the progression stop? Will he continue to get worse before it stops? I am not sure. It seems that there is no clear answer. We will just trust and believe and live our lives as usual for the next few months. By the way, when the Doctor read Curt's records he told us, as we suspected, that the disease was moving extremely fast. It was good that we made the decision to get treated now. I took a picture of Curt & Dr. Ramirez and after exchanging thank yous and hugs, we left the office. We found Ray, after a short search, on the roof of the 6 story building, praying for Curt. He was up there the entire time, praying where he felt close to God. Thank you Ray!
As we left the office, Curt was happy. It was like a weight had been lifted off his shoulders. He walked down the street with Ray to the convenience store for more water for me. He quickly got into the van and was talking and laughing more than ever. We toured the Plaza of the Heroes, it was a lot of walking and Curt was totally fine with all the walking. Margie's aunt stopped for El Pollo Loco and we took it back to the house and had lunch with her big family. A cousin took us to an overlook area of Monterrey. In order to get tot the overlook there were a whole bunch of rocky stairs to climb. Curt took off and left us all in the dust. We enjoyed looking at the big city, from such a beautiful spot, with the warm sunshine and slight breeze in the air. We were all amazed at the amount of big fancy homes filling the hillsides. Monterrey is a beautiful city. No trash, no graffiti, mostly nice homes, mostly nice people. We never felt unsafe. We saw a couple of police cars, but no big police or military presence like we had been told. Curt took his time going down the rocky stairs with Ray & I on either side of him. He struggles going down more than up. He is laughing and joking, it is so good to have the old Curt back!
We left the lookout and headed to H E B to get groceries for dinner. This was the biggest grocery story I had ever been in. There were lots of people. The store was very colorful and vibrant. We had fun looking at the items they carry. Tang was definitely big there. A huge display covered most of one aisle. We were surprised that the prices were the same or slightly more than we pay at home. We felt bad for the people who work so hard for low wages and have to pay high prices for food. We ran into Margie's Aunt who insisted she was buying the groceries for dinner, it was fun to see Ray and her fight over who was going to pay. Ray chased her through the store grabbing groceries out of her cart and putting them into his. I think he won in the end. They are very generous people and so accommodating. It was hard trying to get them to take money for food and gas. We took our shopping carts into an elevator to get to the underground parking, I realized it was kind of weird to be in an elevator with grocery carts, I pulled my camera out of my purse for a quick photo! When we got back to the house, Margie & I hung out in the kitchen as her family cooked. We learned to make an awesome chorizo and cheese dip. We also learned to fold grocery bags into tight little packages, they take up less room when storing them that way.
Dinner was served out on the back patio under the clothes line. The air was warm, the moon was full. We ate bean soup, carne asada, baked potatoes, and fresh tortillas. We drank Coca Cola and Tecate beer. We had spoons for the soup, but the rest of the meal was eaten with our fingers. The steak was hot, I could hardly hold it, I noticed everyone else had no problem holding the hot meat. It was tender and delicious. I felt like I was in a movie; between the atmosphere and all the relatives, the crazy conversations and the warm feeling of being with such a loving family.
Earlier in the evening, Margie's Aunt told me she wanted to speak to me in English. She had never spoken English before. I guess she tried a long time ago but all her children laughed at her so she never tried again. She said after she drank a beer she would speak in English. At dinner, she decided it would take two beers to work up the nerve. When everyone was finished eating she looked at Curt & I and said she was ready. She said "I want you to know that you are part of our family, anything we can do for you just ask, we are here for you, our home is your home, we will do anything for you without hesitation". Wow, she spoke those words in perfect English. She did so well and spoke with such confidence in front of her entire family. Curt & I were very touched and got tears in our eyes. What a blessing to be in their home!
We hugged and kissed them all goodbye and Margie's cousin Fernando drove us back to our hotel. He drove us to a few scenic points on the way so we could enjoy the lights of Monterrey. They all love their city, and so do we! The highways and streets have speed bumps which are not painted or marked. They catch you by surprise! We hit a few going pretty fast and decided we were done with driving in Mexico. Everyone drives very fast, they are crazy yet, courteous. There are no horns honking or angry gestures. We returned to our hotel and spent some time on the balcony enjoying the view for our last night.
Wednesday Night 3-31-10
Wednesday, Ray & Margie got up early to go look at property with her Uncle. Curt & I slept in. We all met up and left for the airport at 1:00. Our plane left Monterrey at 3:30 and arrived in Dallas at 6:30. Curt did great on the flight (no meds needed!) I think he is getting used to the whole flying thing! We went through immigration (yay, they let Ray in), and customs and had time to get a quick dinner at TGI Fridays in the airport. We boarded the plane at 8:30 pm and had a bumpy flight into LAX. Curt was surprisingly calm for such a rough flight. We were greeted at the airport by my mom, Clarissa, Cayden, Corbin and Jim Beedy. It was so good to be home and see everyone!
Overall the trip was great. We will wait patiently to see how Curt reacts to the treatment. I felt that God was with us each step of the way. We are so thankful for Ray & Margie. We never would have done this trip without them. They were so good to us on the trip. We really enjoyed our Mexican Adventure and were glad to have personal guides. Thank you Ray & Margie. Thank you to each of you who prayed so hard for Curt and this trip. We are so blessed to have so many friends and family that care so deeply! Thank you, thank you!
We are leaving tomorrow to spent the rest of Easter Break in Santa Cruz, camping in the motorhome. We are looking forward to seeing the sights and hanging out with friends and family. Thank you for continuing to pray for Curt.