***ALS Walk for Life Registration has started! Please visit HERE to register to walk with ALLISON'S ARTILLERY on September 10, 2011 at Montrose Harbor in Chicago, IL. All donations and registration on the Team Page will go to Les Turner Foundation; all donations on THIS page will go directly to Allison. Please join us on 9/10/11 to walk in support of Allison and her family, and all those affected by ALS.
Allison Update 7/21/11
Allison Update 7/21/11 By Lisa Stoner and Dan Kramer
What an incredible week with Allison, Lisa and I are so thankful that we had this opportunity. Allison is smart, funny and a great hostess. We met so many nice people at the hospital and in the restaurants, and Mexico is beautiful.
The following is a summary of our week;
Sunday (7/17) – Lisa and I arrived around mid- day just missing Aunt Carol. We spent the afternoon getting to know Allison and Chesty. At 7:30 pm Sunday evening the treatments started at the hospital. Allison was in very good spirits and the treatment went well. Lisa and I proceeded to ruin Allison’s diet by loading her up with Salsa Verde chips and M&M’s; Allison made us J. Lisa and I left for a little while but came back around 2:00 am to take Allison back to the Condo. Was a very long day and night for Allison.
Monday (7/18) – While no day can be “easy” on the relative scale Monday was a good day. We had to be at the clinic at 9:00 am. Allison was in incredible spirits…it was a good day and we had all had a lot of fun. It was nice to run into the Clarks while we were there. We had dinner with Allison's friend, Don, who was very interesting and nice. Got to hear some really interesting stories from him about this part work in places like Estonia and Latvia. The restaurant had some delicacies on the menu including tongue, veal brain quesadillas, worms, and grasshoppers but we were elected for less exoctic choices. Very good.
Tuesday (7/19) – This day was not quite as “easy” as Monday. We were back to the hospital at 7:30 am…same routine. Stem cells for about 20 minutes, then stuck in the hospital bed with legs raised for 6-8 hours. The good news of today was that the anesthesia was very strong. Allison was able to sleep soundly for the first three of these hours, making it seem much shorter than Sunday's treatment. We all went for dinner at Flora Farms that night. It is an out of the way place, and we had a hilarious time trying to find it. Dan almost ran into a giant cactus before we found the right dirt road. Once we got there, it was a beautiful organic farm with a restaurant playing the Dixie Chicks music. Chesty got to go with us, which made it even nicer. The menu shared fun facts like people who live in cities have denser nose hair than those who live in the country.
Allison Update 7/14/11 (via Aunt Carol)
I arrive at the airport and made it through immigration after filling out multiple entry documents and being questioned by an immigration officer, showing my passport and my drivers license, I’m finally in.
After two very lovely trips along the coastal highway [in the wrong direction, of course] and lots of help from locals who could not speak English I finally made it to the condo. I unpacked and then had a bite to eat at a very nice restaurant close to home base and then decided to go the MegaMart. The vegetable department was a piece of cake because I could recognize the majority of vegetables and fruits. The rest of the store was a mystery as every label on everything except Activia yogurt was in Spanish. I managed to buy a case of water, two limes, a lemon, four nectarines and a cantaloupe. On the verge of hysteria I left the grocery store. Back at the condo, I couldn’t figure out how to operated the satellite TV, so the day ended quietly.
Tuesday July 12: I drive back to the airport and pick up Allison, Chesty, the electric scooter and the walker, but no luggage. Then we went to the car rental because apparently maintenance on rental cars is not a priority and it sounded like the muffler was about to fall off. We waited about an hour and they finally gave us another car and this one was in “in much better condition” per the rental agent except for the dangling front bumper. I forgot to mention that the temperature was well over 100 degrees and to this day the scooter remains in the trunk as Allison and I cannot get it out!
We finally headed back to San Jose. We went directly to the clinic, but it was closed. Dr. Moon’s assistant told us that we were to go directly to the hospital. We stopped and got a couple sandwiches to go as neither of us had eaten, then drove to the hospital. When we arrived there, they told us that Allison was scheduled for her stem cell final at 8:00 pm. To say the least Allison was not happy. Then they followed that information with the news that they wanted her to stay all night so they could give her another type of treatment at 9:30 am on Wednesday morning. We went home and ate or sandwiches and relaxed a bit before returning to the hospital. She had her spinal at about 8:30 pm and so stayed the night, but not willingly. I stayed until about 10:30 and then went back to the condo and Chesty and I spent the night together.
Wednesday-July 13: When I arrived at the hospital 7:15 am on Wednesday, with Allison’s soy latte from Starbucks, Allison was in a lot of pain from laying on the bed with her feet higher than her head for so many hours. She requested pain medicine during the night and they gave her something and then again when I arrived. At 9:30 am they began a new regimen of drugs and injections. She was going to be a while so I decided to go to Wal-Mart where I was sure I would have more luck with our shopping list so off I went. It was even worse than MegaMart. I was having a panic attack as all I could find was bananas. No one could speak English although everyone tried to be helpful. Finally an employee brought me the store manager who spoke English very well. He took the shopping list Allison and I had put together and literally walked me through the store and handed me all the items we needed except spinach. I took the groceries to the condo and picked up a salad for Allison as she hadn’t eaten since late in the afternoon on Tuesday. I then drove back to the hospital. Allison’s doctor decided that one of the treatments was not to be given as it would cause her more pain. They gave her some more pain medication. We left the hospital at 2:00 pm. After a very stressful conversation with the American Airlines lost baggage people in Cabo, Allison was told that in two hours they would have some information for her. I decided to take Chesty for a walk and when we were on our way back to the elevator a truck pulled into the guard entrance and he started to call to me and asked if Allison was waiting for luggage. Yippee! Clean clothes for Allison. I took the bag and Chesty up to the condo and Allison was delighted. She took a very long shower and changed her two day old clothes and that made her feel better although she was still suffering from pain in her lower back and legs. We went into the town and had a lovely dinner. Came home and went to bed. Too hot to sit on the balcony even in the evening.
Thursday-July 14: When we left the hospital on Wednesday, Allison was instructed to return to the hospital at 7:00 am for another spinal tap on Thursday morning. So 7:00 am we are at the hospital and they begin dripping saline to hydrate her. The anesthesiologist who will administer the spinal arrives with what appears to be a large tackle box in hand. We never got to see what was in the tackle box as there was a communication error and the stem cells for the spinal were never cultured. Dr. Moon’s assistant arrived, but only had the stem cells that are administered via a drip line. After a lot of talking and apologizing it was explained to Allison that her doctor forgot to give the order to culture both the spinal and the drip line stem cells. Allison was given some more pain medications and everything else that she should have except the spinal. Along with the pain killers, her cutie doctor showed up and that really helped her mood. We left the hospital about 2:00 pm and went directly to Starbucks. Made a stop at MegaMart where we scored some hummus and soy milk for Allison. We came back to the condo and ate leftovers from Wednesday night’s dinner. At 4:00 we drove to the clinic so Allison could talk to her doctor about the confusion of today. He apologized and she set her schedule for the next three spinals. Jim and Sue Clark arrived a few minutes after we did and we visited with them for a while. We asked them to join us for dinner, but they felt like staying close to their condo as they were tired from the flight to Cabo. Allison and I went to a Thai restaurant which was new experience for me and we had a lovely dinner once again.
Allison went to bed and I am going to take Chesty our for his last walk of the day. What a great companion he is for Allison.
That pretty much catches everyone up through today. More news as it breaks.
Allison’s Aunt Carol
Saturday, May 21, 2011
Right not we are sitting in the Clinic before Allison leaves early this afternoon to head back to Chicago. Two days ago she made it a goal and was determined to make it to the water and to put her feet on the beach. Al has not yet made it to the beach. We always are positive and look forward in the updates. At the same time, we also want to let people what is going on because we know many are concerned. Yesterday, early in the morning I woke up to Allison calling me because she was very sick in the bathroom. She had a very high fever and was vomiting. Only a couple other times had I seen her this weak and fatigued. Eventually we moved Allison to the couch and I began putting cold cloths on her chest and head. We called Dr. Cerda around 6:30 a.m. and he said he would come around 9-ish. She continued to vomit until about noon. Knowing Al likes to have background noise, I tried my best to put something distracting on - Chloe & Lamar didn't do the trick.
Allison wants me to include that she wouldn't be able to do this without me here. It was very scary - she was unable to sit up on her on and at one point, she vomited and luckily I was right there to sit her up. We emphasize this because we want people to know how important it is having someone here with her in Cabo. In the last few days, Allison has been looking at condos here in Cabo for her upcoming treatment the next few months and even considered living in a one-bedroom condo on her own. I do not think Allison realized until yesterday (nor I) how important it is to have someone with her. This is not saying that 24-hour attention is needed, or that Allison is not independent. If anyone knows Allison, we know that Allison will insist on doing everything on her own if she can - and if someone tells her she can't - watch out, she'll give it her best try and even run you over with her walker if need be. On days that she is not feeling well because of treatment or reacting to possible food viruses, someone should be there.
Around 1 p.m., Dr. Cerda and Nurse Kohori came to the condo to treat Allison. Despite being weak as can be, Allison adamantly insisted that she not move from the couch. It was Allison that suggested how to hang the IV - attaching the broom to the walker and hanging the IV from the broom. I thought she must have done this before. Sitting there watching Dr. Cerda and the Nurse fumble with the broom, trying to hook up the broom to the walker in order to hang the IV from the broom to Allison, I thought about the last time I heard a doctor making a house call and whether a doctor would make the same visit in the United States. Eventually, the IV was hooked up and vitamins and minerals were hydrating her. She received her stem cells and antibiotics and a couple other fluids.
Allison started feeling better around 5 p.m. She sat up about that time, ate some watermelon and strawberries. Shortly after, she said she was hungry and said, "I know it might not be good, but I really want McDonald's. Is it THAT bad?" At that point, I knew she'd be okay. We had some guacamole and chips and a few sips of portabello & pablano soup from Cynthia's. I also got the sweet basket, a nice cross of McDonald's just in case she was feeling better - some garlic fries, sweet potatoes and fried bananas. We had a few bites.
Today Allison is feeling much better - a bit weak and a small fever, but she's getting hydrated at the moment and anxiously waiting to get out of the Clinic and get to the cab that's arriving in 5 minutes. We're not going to make it because she'll be here another 15 minutes.
Al will be back next month. Dr. Cerda just talked to me and suggested I come back next month so Dr. Moon can put some stem cells in MY shoulder because it's the best way to heal lesions (and he thinks I can avoid my upcoming shoulder surgery scheduled at the end of June). A thought...
On one good final note, I was happy to see Chad and Emily come in the Clinic today. It was the first time I saw Chad walking with his walker. He was talking better than I have heard this whole trip and was looking good. Stay positive and look forward:)
Until next time. Thanks for all the kind notes and concern.
Thursday, May 19, 2011
Right now we are sitting in the Clinic while Allison is receiving treatment. She has completed all 4 spinal taps during this visit and has 3 more visits to the Clinic, including this one, before she leaves to go home to Chicago on Saturday. Douglas is leaving today so we are sad about him leaving. But yesterday! My goodness we had a day of all days. Allison had treatment in the morning at the Clinic. She was feeling fatigued and tired from the Manitol and also from doing a good workout in the pool the day before. I'm thinking I need to do what she does in the pool and switch up my routine because she was easily getting a much better workout than me. But for anyone that knows Allison well, being tired and fatigued combined with ALS has no match for a day on a boat on the water. She fought through as she does each and every day, put on the swimsuit, and we all made our way down to Cabo San Lucas where our Captain, Victor, awaited us on his fishing boat, Playing Hooky. We found it an appropriate name for us, and a nice warm-up for boating in Chicago this summer. Don, Bob & Maricella, Douglas, Allison and I left the harbor around noon and went on a fishing and diving excursion. The water, sunshine and boat heals like nothing else. Seeing Allison smile after a tough couple days of treatment and the frustration and pressure of finding her next condo for the few months between June through August brought comfort.
The sights were what I have never seen and gave me new opportunities to test my photography skills (I'll try to post some of my photos). We saw the famous Arch where Victor said the water is the lowest it has been in 6 years - enough where people can walk through. Apparently, the water becomes low every six years and we happened to be here this year. The waves were huge! So big that the crew said that there was either an earthquake somewhere or that a hurricane was imminent. We also hypothesize that the near full moon has had an ongoing eerie conversation with the waves and water because they are crashing so loud and hard, enough so to shake the mirrors and doors in our condo. We jumped into the water along the shores. Bob put on his wet-suit, dove and attempted to spear grouper. On the way to the shores, the fishing lines were all set to catch marlin.
Throughout the day we caught 2 grouper, 1 trigger, and 1 snapper. They were smaller fish, but nontheless, still fish. There was a sense of still wanting the big fish. As we were heading back, around 4 p.m., Allison spotted the fins of a marlin. We circled back. The marlin disappeared but moments later two of the lines caught, Bob screamed out, the crew screamed out "Fish ON!". Then the crew said, "Reel!", "Reel!". Bob grabbed a line and they were yelling at Don to grab a line, all of us not realizing that more than one line was pulling. Don thought he was just pulling the line to get out of Bob's way, only to realize seconds later that he also had a big fish to fight. After a good fight, Bob pulled up a huge tuna. Then Don pulled up another huge tuna. We're talking about two 40 pound Ahi Tunas!
On the way back, we saw the sun setting on the Arch. We had a flock of birds following our boat - all because Victor was teasing the birds with a piece of fish. Don, more than once said, Sarah! Do you see the birds, Do you see the birds? Get your camera! Ah, I have more pictures than my computer can even store right now! Once docked, right on the boat we saw them filet the Ahi Tuna and threw the remains right in the water. As Douglas says, so sanitary and beautiful all at the same time. We took one Tuna and gave the other to the crew.
Don and Bob prepared our dinner and as Allison said, it was the best dinner she has had in a year and a half, and the best dinner she will have in the next 2 years. It was THAT good. For appetizers, we ate Ahi Tuna with green onion, garlic-soy sauce, Grouper and Trigger bites both breaded and beer-battered pan-fried. For salad, we had fresh caprese salad and caesar salad with Don's famous dressing. The tomatoes here cannot be matched. They are so good. I don't know how I'm going to be able to eat another Chicago tomato, even from Whole Foods, especially for $3 a tomato. For our main entree, Bob prepared a a thick seared Ahi Tuna steak. Seeing the tuna go from the boat to our condo to our plates, knowing it's fresh and knowing what real fresh tuna tastes like - what a treat. It was an amazing day and a memorable meal. Thank you Bob and Don!!
May 14, 2011 - Back in Cabo
Hi everyone, today is Saturday and we are here at the clinic where Allison is receiving Manitol and Dex-something - a steroid injection to open the blood brain barrier, prior to receiving the stem cells. Yesterday Allison had her second second spinal tap here. Both spinal taps have gone smoothly. At this time, I am overhearing a conversation where a one of the clinicians wants Allison to have another spinal tap while she is here - making it 5 spinal taps while she is here. Each spinal tap is $1000. But that conversation only touched the surface of the one with Dr. Moon on Thursday.
After treatment clinic, Allison requested an appointment with Dr. Moon to sit down and talk about some important details of her treatment. First, she wanted to know his treatment expectations and frequency of treatment. Allison originally intended on treatment through June 2011 in Cabo. Dr. Moon said he wanted her to return June, July and August. This treatment was always possibility, but Allison was hoping to have her summer in Chicago and Michigan. She let him know that her breathing and walking had improved, but that her arm strength and decreased. Dr. Moon stated that the nervous system works as a whole so that since some of the body is improving, then certainly her arm strength can improve as well. During every day activities Allison exercises her legs by walking and lungs by breathing, and Dr. Moon believes Allison needs to making a conscientious effort to begin strengthen her muscles in her arm and hand through physical therapy.
Allison asked what Dr. Moon's expectations were as far as treatment outcome. Dr. Moon stated, "Allison, you will not die from ALS. And within 6 months, you will be married." Allison's response to that was, "Dr. Moon, many men find those outcomes synonymous!" On a serious note, Dr. Moon stated, "ALS is difficult to treat, even for me." However, he encouraged her and insisted that she continue with her monthly treatment in Cabo until a point when she can go every other month without symptoms declining (and progressively more time in between treatments).
On a lighter note, we have casually begun scoping out potential candidates for Allison's marriage in 6 months, as well as ideal Cabo marriage sites. If the candidate is willing to pay the $15K a month for her treatment, even better. We had a cocktail at the Container and felt right at home in the marina, overlooking the beautiful boats and the sun setting. We unfortunately did not find a candidate at the marina who met the requirements - only a very good looking guy that we couldn't figure out if he was part of the crew or a captain or bar owner.
Allison just received a schedule of dates that she will be in Cabo: June 6-June 15; July 11-20; August 9-18. Allison welcomes anyone to come to Cabo with her and Chesty.
As I'm sitting here, it is nice to be able to see the Clinic, meet her support network here - Jim and Sue Clark, Jim and Kim Dettle, Dawn, Emily and Chad, Bob and Jeannine Fishback. I have heard more than three people - her support network that sees Allison every month in Cabo - tell her, "Allison, your speech has really improved since the last time I saw you." Seeing Allison frequently, it is more difficult for me to note the little changes. For people that see her once a month, it is great to hear other people notice improvements, especially many people that are going through the same journey Everyone is positive and hopeful. There are ups and downs certainly. Days of tiredness, but then days of energy. If you have considered coming to Cabo at any time, think about coming June, July and August. Allison is independent as can be, but a little help to get to/from the clinic and having a friend there goes a long way.
Stay tuned for the next update.
April 22, 2011 - From Cabo back to Chicago!
Well, I'm sitting in the airport with Mr. Social, aka Chesty. I'm exhausted from treatment and people just can't leave my handsome little man alone. Yesterday while I was receiving my final spinal tap, Don picked him up and they went surfing! Chesty apparently ran into the water and rode the waves in! He is having a blast! He made friends with a puppy down here too!
Meanwhile, I am very busy healing! All of my spinal taps went extremely well. The anesthesiologist commented that I'm much "faster" than I was last month and congratulated me. I'm not exactly sure what he meant but positive reinforcement always helps. Dr. Billy from Korea was here this month and also commented that my speech has improved!
I am determined to heal and determined to fight. This is not only a journey of healing my body, I am also healing my mind. I challenge myself everyday both physically and mentally. No one at the clinic can believe I am traveling alone. I choose to take this challenge. I am challenged to ask for help and to gracefully accept help. For those of you who know me, you know I am very independent and this is a daily challenge. I believe in trying my best. The saying goes, if you don't use it, you lose it. I do NOT plan to lose it! It may take me a long time to do almost anything but I believe wholeheartedly that this treatment is giving me time and I plan to use it!
I continue to believe in mind over matter. I choose to wakeup the morning before a spinal tap feeling grateful that your efforts have made this all possible.
I don't know how to show my gratitude other than fighting! Without all of the fundraising and the mental and physical support of friends this miracle would not be possible.
I got great news that Sarah and Douglas are both coming with me next month! I have secured another fabulous condo...even better than this month!
I'm looking for volunteers to join me in June....
Thank you for you support!!!
April 17, 2011 - From Cabo - a note from Emily, Cathy and Allison
Hola amigos! I'm writing this for Al as she's lying in the hospital after her second spinal tap since we arrived. Al found a beautiful 3 bedroom condo fully equipped with a car to get around and a picture-perfect view of the ocean - an ideal setting for getting healthy. When Cathy and I got here on Wednesday, Al was feeling great so we took her to Costco loaded up on the essentials for the house. We relaxed at the pool for a bit, Al did her pool exercises and then went to a wonderful open-air spot for dinner- Mi Casa. Emily (Chad's wife) came along for a fun girls night full of margaritas to kick off our visit.
Thursday we headed over to the clinic for a few hours of treatment - the clinic is extremely modern and clean. It was great for Cathy and I to not only meet all of those being treated and Al's extended family here, but to also meet Dr. Moon and all of his supporting cast. Dr. Moon was in high spirits and we captured a pic for her website - afterward he kissed her on the forehead and whispered words of encouragement. It's humbling to be surrounded by so much love for our friend on the road to recovery as well as seeing how much this group of folks supports one another. One woman, Nancy was told after fighting brain cancer for the last few years that all of her tumors were gone. We all shared a cry of this announcement with smiles of celebration for her and hope for all. The Clark's arrived on Thursday and went directly to the clinic for treatment. Thursday night we treated Al to the Cath/Em salon by making her hair & makeup camera-ready. Just the three of us went to dinner at Al's (and now our) favorite spot on Thursday at La Fonda. Three blondes shared a braised short rib the size of Cathy and lobster burritos. Absolutely Delish! We were also entertained with a table-side preparation of flaming Mexican coffee!
Friday was an early start with a 7 a.m. ride to the hospital in San Jose. Allison got in right away for her tap and then the countdown began for the 8 hours on her back. She has her routine of entertaining herself, but we threw that out the window as Cath climbed into bed with Al and we played Taboo and Date/Marry/Throw off the Cliff - if you don't know that game ask Al for a round next time :) It's a grueling day, but Al, as always, cranks through with the highest of spirits and determination. It also doesn't hurt that her beauty attracts everyone in the hospital to stop over and check on 'the princess' as they call her :) Even laying flat on her back in a hospital bed, Al's still got it. On Friday night, another patient, Don, came over to the condo and made the 7 of us (Emily/Chad/Clark's/3 blondes) a wonderful dinner. It was an all-in effort as we helped to make guacamole, Caesar salad, crab pies and fruit salad. Al was wiped from the long day, so just Cath and I headed to a bar up the street - Baja Blue. The highlight our entire trip occurred on Friday. Jim Clark introduced us to a fabulous new drink he is calling The Noah - tequila, fresca and lime. We all enjoyed many that he made us during dinner and then Cath & I were pleased that our Baja Blue bartender - aka King Solomon was able to make us some Noahs too. We recommend everyone try this new concoction and toast to Allison.
Yesterday Al headed to the clinic again for treatment and needed to rest, so after her nap, she used the walkie talkies to radio us to get out of the pool and head out to Zippers for lunch. Zippers is a new found favorite gem - right on the ocean, serves up amazing blackened fish sandwiches while listening to live music. Don joined us at Zips and at the pool where Al and Chesty enjoyed working on some water aerobics. We then headed into San Lucas to show Cath the marina and enjoyed more Noah drinks and dinner at Soloman's. Al brought her scooter so she could cruise around the marina - seeing Cath and I in sundresses load and unload the scooter into the SUV was a scene out of America's funniest videos.
Today we were at the hospital at 7 a.m. and are waiting until about 3:00 to leave the hospital and get sushi then back to Zips for our last round of Noah's and Reggae live music! Al stays through next week and has two more spinal taps and treatment at the clinic every other day. Chad and Emily will stay on through next weekend with her for additional treatments as well. Cath and I leave tomorrow with many mixed emotions. We are so happy to have seen all of this first-hand, who Al has been referring to, how much she is loved and supported, to be here for her and see all that she's going through (and we found out about the new drink - the Noah!) But, it's also so hard to leave her, to know she's coming back to go through all of this again next month and to go back to our every day lives while she continues to fight.
Love, Em, Cath and Allison
Today is 3/29/11: Allison is now In Cabo continuing to receive stem cell treatment and gene therapy treatment. Her blog continues below on 3/9/11 from Cabo. She continues to do well. When Allison returned from South Korea, she looked beautiful as always, but even more so, refreshed and reinvigorated. Her spirits were high and her skin was glowing. When I say this, I am not being trying to give a cliche picture or over-exaggerrated idea of what I observed: truly, Allison looked well and in her words whether it sounds crazy to people on the outside whom may or may not understand, "I am healing on the inside." Though physical improvements are not expected to be seen for 6-8 months from the stem cell treatment, we can already see a change in her speech and motor functions, but most importantly, her energy level, positive spirits and a feeling of hope.
As you all know, the stem cell and gene therapy treatment is not cheap. There is not a choice for Allison to continue this treatment. We need your help. Allison will be in Cabo in April, and then off and on for the remainder of this year. People have asked how they can give. You can give directly on this website or send a check by mail (email at shgreene117@gmail for address).
There are other ways to give if money may not be an option right now, and we understand. If you have airline miles, hotel points, or even a time share or know someone with a time share in Cabo, these are all viable ways to give to Allison. She will be down in Cabo for weeks at a time, and we could not thank you enough for support in airline tickets, hotels/lodging.
Allison's Artillery has gathered forces again and already begun planning for this year's events. Please check out the event's page for upcoming events. We are planning monthly bar events, starting in May for a possible cinco de mayo event at the Mystic Celt in the works right now. Stay tuned for an Fundraising Gala at Topo Gigio for some time in June. The Les Turner Foundation is now taking reservations for Lou Gehrig's Day at Wrigley Field on May 7, 2011 - sit with Allison's Artillery and wear your walk shirts from last year! We will also begin planning for the ALS Walk set for September 10, 2011 and the big fundraising party that weekend. If you would like to help in any of these planning events, or would like to host your own event in your city or for your friends, please contact me. I have lots of ideas. Thank you again for all your support.
Allison will be receiving stem cell treatment in Seoul, South Korea
Allison and Nick Ginsberg left Chicago on Saturday, Febuary 12, 2011. Dr. Woo Chul Moon, a highly regarded doctor in South Korea and the United States, will be performing the stem cell treatment. He has performed the stem cell treatment on a number of patients with ALS in South Korea already with success.
Allison's brother, Nick, was a match for the treatment. Early next week, Dr. Moon will start taking Nick's stem cells, thru a process called leukapheresis, separating the stem cells from his white blood cells. On Wednesday, they will begin harvesting the stem cells. Allison will receive the stem cells by a spinal tap and by an IV, in which she must stay still for 8 hours. Nick and Allison will be there for 10 days in total. I hope that I have described in very brief terms what will be happening.
Allison emailed while on the plane that left at 1 a.m. Both her and Nick managed to get bulk head seats and are each sitting on the aisle - key for a 14 hour direct flight to South Korea! Both have lap kids next to them - Nick has 2 kids and 1 adult. Al's goal was to stay up until 4 a.m. and then sleep the rest of the way. I'm not sure she will have a problem with 3 kids next to both of them. The amazing part that Allison noted was that she met the other ALS patient that Dr. Moon will be treating. The couple flew from North Carolina and connected to Nick and Allison's flight in Chicago. Allison, like you said in your email, this couple is not the only believers. We believe in it, we believe in what you and Nick are doing, and you have our full support. We love you.
Allison will not be able to receive phone calls, but she can receive email while in South Korea.
What we hoped before leaving is that Nick and Allison would use the space below, energy, health, and technology-capability provided, in order to write updates about the treatment and progress. Please check back for updates.
Again, the Ginsbergs thank you for your continued support and compassion. Stem cell treatment in South Korea would not be possible without the money that each and everyone one of you gave to Allison in this past year - at fundraisers, individually, and at your own events. For her continued stem cell and gene therapy by Dr. Moon, we are looking to raise $20,000. Please contact Sarah Greene at firstname.lastname@example.org if you want to organize a fundraiser or contribute by check, or you can give to Allison's fund on-line on this website. Thank you, again, from the bottom of our hearts to allow Allison and Nick the opportunity to receive this treatment and have a chance for a promising future.
Allison and Nick's Blog from South Korea
Leaving Chicago at 1:00 am Sunday February 13th, we would have never considered the possibility of a flight at that time being loaded with kids but...
We got our seats, said goody-bye to Wendy and boarded the plane. We both ended up with aisle seats in the bulkhead giving us more leg room. Both of us were surrounded by families. Allison had two infants to her left and I had a family of three in the two seats next to me. A mom, five year-old, and a four week-old. I can't begin to tell you how valuable a good set of noise-reducing head phones can be in this situation.
Randomly we met Chad & Emily from North Carolina. Chad is the other ALS patient being treated by Dr. Moon.
For a 14-hour flight things went rather smoothly.
After landing in Seoul we met up with our ride and started our trip to the hotel just in time to catch Monday rush hour. We were still able to make it to the hotel in time to catch breakfast. The buffet had lox and bagels, miso soup, bulgogi and rice, kim chi, and all the American standards. The hotel is very nice.
After breakfast we got settled, set up Skype, and passed out. The plan was to nap for an hour or two and go explore. 6 hours later the phone rang to let me know Nurse Moon would be stopping by to give me a shot in the stomach to increase stem cell production.
My hope is to update this daily. Feel free to email me with any questions (or grammar corrections).
Stopped by the Clinic today. Everyone is really friendly. I got my second shot in the stomach to increase stem cell production and Allison and I both got blood drawn for additional testing.
After the Clinic we headed back to the hotel with plans to venture out. At the hotel we were stoped by the hotel manager Jay Woo Park and asked if we had a minute to talk. He let us know that Allison had scheduled our reservation for February 13th which is the day we left Chicago. Due to the time change we didn't actually arive at the hotel until February 14th. Because of the error we were "no shows" and our reservation had been cancelled. Mr Park let us know he could accomodate us but the rate would be different and we would have to pay for the "no show" night. For those of you who know Allison well this was not acceptable. We both told him to fix the problem or we would move to the other hotel down the road. The other patients from the U.S. were staying there and we had been working on getting them moved to where we were staying. On the way out the door we ran into Emily & Don (another patient from North Carolina w/ cancer) who were there to check out the hotel. In front of Mr Park I let them know are problem and told them they might not want to move. Our problem was fixed immediately.
That afternoon Chad, Emily, & Don all moved to our hotel.
We had dinner with Chad, Emily, & Don at the hotel. The food and company were both great.
Today I had to be at the clinic at 1:30 for my first harvest. This involves taking a couple calcium pills, getting an IV, and being hooked up to the harvesting machine. The process took about 2 and a half hours. Allison met with Dr. Moon and gave him a coffee table book on Chicago. This went over huge and it turns out he lived in Chicago for a couple years. Dr. Billy, another doctor and cancer patient, seems to be at the clinic every day. He speaks good english and is very helpful. Dr. Moon feels very confident about Allison's treatment. He said it is not a question if she will heal but how much. He identified her SOD2 antioxident gene was mutated and is very excited that he can treat that with gene therapy. The plan is to attack her disease with three kinds of stem cells.
They decided to harvest Allison's stem cells also so she got her first shot today. It increases the bodys stem cell production but also makes you a little sore.
Today we showed up at the clinic to get Allison's second shot and found out she was going to get her first stem cell treatment. They hooked her up to fluids to hydrate her and gave her a steroid injection and manitol to open the blood brain barrier. Next she received stems cells thru the IV.
Today Allison had her stem cells harvested. She found it pretty relaxing. After harvesting she received her second round of stem cells. Same procedure as yesterday. They also started gene therapy today thru the same IV. We scheduled for the first spinal tap today. That will happen next Tuesday.
Once again we went to the clinic for Allison's treatment. It consists of 30 minutes of IV fluids, 30 minutes of manitol and a steriod injection to open the blood brain barrier, and finally 30 minutes of stem cells combined with gene therapy. Allison is starting to get used to the process. After treatment Dr. Moon informed us Allison would be getting a second spinal tap a week after the first. This means she will have to extend her stay to March 2nd. Unfortunately I will have to leave on February 24th as originally planned due to work & family.
Yesterday we had the day off. Today we continued the treatment routine at the clinic. I received my shot in the stomach to prepare for my second harvest. We talked with Dr. Moon about the spinal tap procedure. We will head to the hospital in the morning and the spinal tap should happen around 2:00 pm. Then she stays in the hospital overnight.
Today Mr. Mok (Dr. Moon's Driver) picked us up and took us to the hospital. We arrived around 9:00 am and did our rounds with Chad and Emily. First chest x-rays, next blood tests, and lastly an EKG. After that we had a couple hours just waiting for the spinal tap. They came in and set Allison up with an IV for giving her fluids and a high protien meal. Next came the spinal tap. A doctor from the hospital did the tap then Dr. Moon injected the stem cells. Allison felt a sharp pain down her left leg and thinks they bumped a nerve. We are told that the first tap was 10 million stem cells. Shortly after the spinal tap I was told Dr. Moon was going to do two more...one Friday and one Monday. The plan is to increase from the 10 million stem cells today to 30 million Friday followed by 100 million Monday. I was lucky enough to be the one to break the news to Allison. She had a very positive attitude and said she was there to be healed.
Allison has 8 hours of laying still to prevent complications and or headaches.
Spinal tap went good. 8 hours was a long time to lay still on a Korean hospital bed. Today we got checked out of the hospital around 11:00 am and stopped at the hotel to relax before we had to be at the clinic at 1:30 pm for me to be harvested again and Allison to get her IV treatment. The harvesting was a little more unconfortable today but only lasted 2 hours. Today was my last day here so I spent as much time as possible making sure the other patients would look out for Allison. The rest of the time was spent packing. We talked to Jody Alger who is stationed an hour out of Seoul for the army and he offered to come Sunday night so he could be there Monday for the spinal tap. It is incredible to have such a caring friend that close!!
Today we all met for breakfast, Don, Chad, Emily, Allison, & I. Nice little send off for me. Allison and the rest of the group headed for the clinic and I left for the airport.
Talked to Allison today. She headed to the hospital for another round of Spinal Tapping. She said things went much better this time and she was more relaxed. She had Emily & Chad at the hospital with her. Chad is also recieving the spinal taps. After Don finished treatment at the clinic he stopped down to check on Allison also. This time she ended up with a little more of a headache but nothing to worry about. I wasn't able to reach her over Skype so I contacted Don via email and he went back down to the hospital to check on her for me. Everything was good.
Talked with allison again today. She checked out of the hospital around 12:00 and headed back to the hotel. Nurse Moon came to the hospital to give her the IV stem cell and gene therapy. This was nice because she didn't have to head to the clinic right after leaving the hospital. Chad & Emily leave today and Don leaves Sunday. Allison is a trouper and is in for the long haul. She is willing to do any and everything Dr. Moon recommends. The clinic has hired an American missionary to sit with her at the hospital Monday in case anything changes on base and Jody is not allowed to come. I feel she is in good hands either way.
Allison Takes Over Blog & Updates
Day off today. Jody Alger came in and had dinner with me. He will stay thru the spinal tap tommorrow. It is incredible to be in South Korea and have a close friend from home here to look after me!
I had my 3rd spinal tap today. It went very smooth and Jody was here to keep me company. The injected 100,000 stem cells in thru the spinal tap today. I have one last night in the hospital and fly home Wednesday.
Well I was supposed to leave for home 3 hours ago and unfortunately I am sitting in a random hotel near the airport in Seoul. I had a headache from my spinal tap the other day so I was laying on the chairs in the gate area and I figured why not test my luck. I explained that 2 days prior I was in the hospital for a spinal tap and that I had a residual headache from the procedure and that it felt much better when I was lying down. I asked if there was room available in business or first class so I could recline and the gate attendent said she would check. After talking with her manager and the pilot she notified me that I would not be able to board the flight unless I had a note from my doctor saying it was ok for me to fly. Long story short, I will not be flying home until tomorrow.
Well, today things went much better. They got me a new flight and I will arrive in Chicago at 2:15 pm on Thursday. They have given me new luggage tags and have assured me that my bags will be transferred. The hotel last night was great and compliments of Air Canada. The headache is Gone!! I fly to Cabo on Monday morning and have my next spinal tap on Wednesday.
Good morning! It is so nice to be on a similar time zone as you all. Good news is that I'm only an hour off Chicago time but I am 16 hours off Korea time! I was able to enjoy 3 very busy days in Chicago and I am in Cabo now. The best news is that I was able to bring Chesty! On Tuesday morning we were at the clinic at 9 am. The clinic here is luxurious compared to Korea. We all have private rooms but it is still nothing like you would expect in the states. The rooms have a twin bed with a regular comforter and an IV pole. The clinic is in a very high end strip mall that is part of the Palmilla resort. After the clinic we headed back to the condo. Tomorrow is my next big spinal tap. I will have the procedure at a very small hospital in San Jose del Cabo at 8 am and I will be able to go home around 4 or 5 pm. Much better than in Korea where I had to stay overnight!
I made it through my 4th spinal tap and it appears they just keep getting easier and less expensive! It was only $500! The hospital was tiny but they had real hospital beds and they took me into a surgical suite for the procedure and gave me a drug to relax me before the tap. I had three doctors. Dr Moon, Dr Cerda (my doctor in Cabo), & Dr Spade from Charlotte, South Carolina. After the tap, I was taken back to my room to lay flat for 7.5 hours and for my listening pleasure they had a rooster outside my window...only in Mexico! The next tap is Saturday. Dr Moon discussed increasing the stem cell count from 100 million to 200 million.
I am sorry I have been out of touch. I have received three spinal taps and six hundred million plus stem cells in the last five days!! It is exhausting healing! I found out, while being rolled into my spinal yesterday, that Dr. Moon wanted me to receive another three hundred million stem cells via spinal tap tomorrow. In the study that the U of M is performing in Atlanta, they are giving millions not hundreds of millions of stem cells. I also found out that they forgot to charge me for the anesthesiology and when that was included, the price was the same as in Korea. There is also a daily charge for the clinic use but if I see improvement, it will all be worth it.
I will be back in Chicago on the 29th of March until the 11th of April when I will return for more treatments.
I'm doing great and feeling great! I've had two days since my last spinal tap and my energy is back!I I spent 30 minutes in the pool yesterday and today. I am actually somewhat swimming with a noodle under my belly. It feels so good to move. I also did a little pilates today too. Tomorrow is my last day of treatment this month and then I have vacation with my sister. I feel so lucky to be able to enjoy this healing journey! It is truly life changing in a very positive way. My doctor really stressed the importance of a low stress life, with a healthy diet low in carbs, and pool therapy. I am ready to take this on!
The friends of Allison Ginsberg are seeking your support. Many of you know Allison either from her childhood at Gull Lake, her days at the University of Michigan, her current hometown of Chicago or her years as a successful sales rep and manager with Intervet. As you know, Allison is one of the most outgoing, active and vivacious people you will ever meet. Those who know her will agree that Allison is more comfortable giving help than receiving it. Because it is unlikely she would ever ask for assistance, a group of her friends have formed “ALL-IS-ON The Fight is on Against ALS” to ask for your support on her behalf.
Our mission is to improve the quality if life for those affected by ALS, including our friend Allison Ginsberg. We carry out this mission by participating in local and national ALS fundraising events, empowering those affected by ALS by supporting recreational and therapeutic intervention programs, and advocating for continued research in the fight against ALS.
Allison was diagnosed with ALS, commonly referred to as Lou Gehrig’s Disease. In the past, this disease was commonly known to affect men between the ages of 50-60. Now, research indicates that ALS affects as many women as men and is touching a much younger population in their 30's. More information on this devastating disease is available on the Les Tuner ALS Foundation website found HERE.
Each day Allison faces new challenges. As the effects of ALS continue to worsen, the simplest daily tasks are becoming increasingly difficult for Allison. As with all ALS patients, these routine daily tasks eventually will be impossible for her to perform independently. To manage daily living Allison and all patients with ALS face extraordinary expenses. These could include the following: a certified nurse assistant ($15-20/hour) to help with basic daily activities, a live in nurse ($130-150/day), a power wheelchair (after Medicare pays 80% it could cost $4000), a conversion van to transport the wheelchair, and a ceiling lift to get her in and out of bed ($5000). In addition, Allison and other ALS patients seek alternative treatments such as acupuncture and holistic medicine that may not be covered by private insurance or Medicare. As we all know, medical expenses can add up VERY fast. The struggle to cover the costs is exacerbated b
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