Humbling generosity keeping hope alive

Just for a moment, I'd like you to step into Kairit's shoes. One day you are walking in the sand at the beach, playing volleyball and riding a bike. You feel strong, vital, and healthy. Then, slowly, over a brief few months your muscles begin to fail you. The doctors put you through a battery of tests. They don't know what's wrong. One suggests you need to be in a psychiatric hospital because he never heard of such a thing as muscles feeling like popcorn in your body. Another says you are just nervous and need Xanax. You can no longer climb stairs, or walk with your head held high, nor quickly nor far. You can no longer work. The muscles in your hands are weakening, too. You can't brush your hair because you can not hold a brush.You hold a fork and knife like a child holding a tool. Someone needs to cut your food.

You finally find out from the doctor that you have amytrophic lateral sclerosis, or ALS. When you ask what it is, you learn that it's a difficult problem for which there is no cure. And, oh, there's no treatment either.

We need to change this. Several months ago Kairit's sister, Hurmi, reached out to friends and family to help Kairit fund the stem cell implantation therapy she underwent about ten days ago. Kairit lives on a small government stipend for which she is grateful but does not provide any extras. We have learned that people are generous. The family is grateful for all the assistance.

Just today Kairit learned that a very generous Spanish gentleman donated a large sum that will cover all of the medical expenses Kairit incurred at the X-Cell Center not yet paid. Such kindness is overwhelming! It enables Kairit to focus on staying healthy with an eye on the future.

We have skyped this past week. Kairit has not had any noticeable effect yet from the stem cell treatment but she looks and feels well. There is no noticeable deterioration either. Hope is still alive.

We have started a campaign to raise funds for the Los Angeles Chapter of the ALS Association for a symposium to bring together ALS researchers from around the world. There has never been such a gathering.

This year on June 27-28 the ALS Association is holding its first two-day symposium near Sacramento. It will bring together local and regional researchers who no doubt will welcome the face to face time to discuss the data that has amassed on ALS. I so hope it will bring new ideas and help Kairit and others live.

If you would like to donate to the Leek Family Fund and help us make this international symposium a reality, please click here.

Donations earmarked to the Leek Family Fund can also be mailed to the ALS Association at:

ALS Association - Greater Los Angeles Chapter
Attn: Leek Family Fund
28720 Roadside Drive, Suite 200
Agoura Hills, California, USA

On behalf of Kairit and the extended Leek family, thank you.

Note: Videos from our trip to the X-Cell Center in Germany are forthcoming...

Thoughts on the last night in Germany

Kairit's blue eyes filled with tears that fell on her cheeks. We were having dinner in the hotel restaurant on our last night in Duesseldorf. She talked about the impact ALS has had on her life. She was an artist who worked in a flower shop while honing her craft and searching for work. She studied theatre art and glass painting. Finally about five years ago the hobby that brought her joy turned into work that she loved and could live by.

She began illustrating children's books and greeting cards. For several years, Estonia's largest chocolate company, Kalev, hired her to design their Christmas packaging. She taught art classes at the Tartu Art Institute and found satisfaction in having students find their talents through her teaching. She was able to buy a small apartment in a rural area and life was good.

Estonia is known for its cultural activities and Kairit's favorite work was in the theatre where she painted masks and actors' faces. It's in a small regional theatre in the summer of 2008 where she met her partner, Anto Siimson. Anto, who works as a musician and furniture craftsman, was performing in a play. He has been by her side ever since - in the beginning when the struggle to get a diagnosis was so frustrating and painful, and since, acting as a caregiver against what could become insurmountable odds. He's loving, kind, thoughtful and strong, lifting her out of a chair, carrying her when she cannot climb stairs or get into a car. He's a helpmate at home, too, with cooking, cleaning, and whatever else he can do. Most important, he makes Kairit feel beautiful, and despite the muscles that have shrivelled and shrunk, that she, Kairit Krikk is the most wonderful woman in the world.

Kairit's medical experience has been good at Tartu University Hospital except for some confusion as to whether or not she has ALS or MMN (multifocal motor neuropathy, a non-fatal motor neuron disease.) Not all the doctors agreed on the diagnosis (not unusual in cases of difficult diseases in which the diagnosis results from the elimination of possibilities.) Kairit says when she had the IVIG treatment (Nov. 2009) usually prescribed for MMN she was doing better, able to climb stairs carefully and the muscle-wasting did not seem to progress. That benefit lasted until the end of January. However, her next appointment was not scheduled at Tartu until mid-April, and despite her many efforts to get it moved up, she could not.

The stem cell treatment, she thought, was the only option to try and hold off any further damage to her body. She is hopeful that it will help but it may take a few weeks to ascertain what, if any, improvement there is.

I was upset to hear Kairit's story about a Dr. Katrin Gross-Paju who is known as a top neurologist in Tallinn, Estonia's capital. She could use some sensitivity training. She's not unlike some doctors we have in Los Angeles who spend more time on their television careers than paying attention to their patients. I once waited in a well-known female ob-gyn's patient room for three hours...thinking she was dealing with an emergency...when she breezily walked in and said, "I'm so sorry. The front desk should have called you." Turned out the doctor had a last-minute TV appearance. I never saw her again.

Dr. Gross-Paju's office ordered a muscle biopsy done on April 7, 2009. When Kairit called repeatedly to get the results over a period of six months, she was told by the doctor that the results were not in and she needed to wait. Kairit did not know if such a long wait was normal. Kairit had no way of knowing that the lab had sent back the results by April 27 noting the muscle biopsy (a painful procedure) needed to be repeated because the arm tissue was not enough. It had to be done on the leg. It was only when Kairit's older sister emailed the laboratory that they found out the results had gone back to Dr. Gross-Paju's office six months earlier. Kairit then proceeded to have the second biopsy which indicated ALS.

Kairit's final appointment with Dr. Gross-Paju was demoralizing and difficult. When Kairit asked about her options she was told there were none. That's true, there aren't any.

When Kairit asked if she had any help to give, the doctor said, "I can get you a breathing machine."

Kairit: "But I don't have any problem with my breathing."
"You will, and then you will come back to me," says Dr. Gross-Paju.
Kairit: "But what can I do? What help can I get?"
"I can do nothing," says Dr. Gross-Paju, "You are going to die."

Here you have a young woman who has just been diagnosed with the most awful disease...in a country with no supportive ALS services...whose tests were delayed by six months...who had nowhere to turn, no knowledge of the death sentence that had just been pronounced. Some kindness would have been welcome, even in some gentle words, saying "I am sorry for your situation. I would like to help but to date there is no cure and no therapy. We will keep in touch and I will assist as the need arises."

Doesn't take away the shock but helps to cushion the blow.

Kairit's Blog for Estonian speakers

To read Kairit's personal blog, written in Estonian, click here.

Procedure done and now we hope...

Kairit, our family soldier in the fight against ALS, was released a day early from the X-Cell Center hospital. Except for the slight fever last night and a sore neck from the positioning of her head during surgery, she has had no complications.

When I walked into her hospital room at nine this morning, she had already showered, had breakfast, put on a little make-up, and settled into the comfortable hospital bed to watch TV. The doctor had been in to see her and was very happy with her progress.

I gave Kairit a little shoulder massage and we walked (Kairit with Anto's help of course) to the reception area for a good cup of coffee. I met Margeurite, one of the administrators at the center. There are two locations in Germany but the owners are from the Netherlands. Marguerite said many of the ALS patients they have seen have worked in jobs involving toxins. While not everyone who works with chemicals gets ALS, obviously the immune systems of some people

can't handle the poisons.

Kairit said her first symptom was the feeling that her muscles were like popping corn all over her body, especially her legs. They never stopped. The popcorn feeling was intense at the beginning but has abated over the past nearly two years. Kairit was an artist working with paints and pencils but she also worked in a flower shop for 5 years.

Is ALS caused by toxins? Doctors may say they don't know but we think it may be. Our environment is polluted and our workplaces and homes are filled with poisonous substances. We are not the first to think toxins may be responsible for many diseases such as cancer, immune system disorders, or motor neuron diseases. The list goes on.

Perhaps we could deal with the consequences if there were hope for survival but there is no treatment for ALS. Kairit knows that this amazing stem cell procedure she underwent is not a cure. We will have to wait and see how successful it was...but she has at least had a therapy that may bring some improvement if the detoxifying she has done the last several months has helped her, if it's even what's needed. In any event, Kairit - but for ALS - is healthier than she was six months ago. If the new stem cells are viable enough....So much emotion involved as I am

reading the doctor's report on the transplantation:

On 10:03:10 (Mar. 3/10)

stem cells were implanted in general anesthesia via neuroendoscopic

ventriculocisternostomie 3.0ml in high concentration: 1.0 ml in basilar cistern,

1/2 ml in third ventricle, rest in side ventricle an solution intraparenchymal.

We have transplanted 4 650 000* CD 34 cells (Vitality 90.1%)

In the United States they have begun clinical trials to see if the lumbar puncture procedure is safe enough. That phase will take two years. Then phase two another two years...then phase three...and maybe after 5 or 6 years the FDA will sanction this procedure which they are now doing at the X-Cell Center. Why can't the doctors in the USA come here with an FDA official and check it out? See what they do?

My new Canadian lawyer acquaintance who has ALS was also in the intensive care when Kairit was there. He was able to have the stem cell implantation through the occipital area. He was doing well and released to his brother for two days of rest before heading home. We saw other patients as well following stem cell procedures, including two young children. We don't know what medical problems they were being treated for but we can assure the reader they looked no worse for the wear. How well the stem cell implantation works is yet unknown for these patients but others have benefitted.

Surely when people's lives can be improved it would behoove the medical professions all over the world to work together, wouldn't it? ALS is a horrible disease that attacks the muscles, causes them to atrophy, with the most severe patients losing their ability to walk, use their arms or hands, swallow and breathe while keeping their minds intact. I don't care where the best therapy comes from to help my niece and other ALS patients. I don't care if the cure for ALS comes from China, Germany, Russia, Mexico, Canada, or the U.S.A.

I am going out on a limb here...but the lumbar puncture is safe, as is the occipital procedure and the neuroendoscopic stem cell implantation done by skilled neurosurgeons under FDA-type rules and regulations. At the X-Cell Center they use the patient's own bone marrow to harvest the cells. Maybe in the future stem cells from other sources may prove more beneficial but right now this seems to hold hope for some. Yes, it's a private facility and it costs money to do this but Kairit doesn't have anywhere else to go.

Kairit, Anto, and I will spend our next twenty-four hours watching television, reading, snoozing,

eating, and talking about the incredible week we have had in the multicultural clinic. There are people from many countries performing different specialties. The waiting room is just as multi-ethnic and when it comes to health and good care, we all look the same.

A step into the future...

Shortly after noon today, Kairit Krikk stepped into the future. She is not the first ALS patient to undergo neuroendoscopy stem cell implantation but to the best of my knowledge, she is the first Estonian to have it . She said this morning that faced with a dire prognosis it is a lot easier to take that step into what may one day be more commonplace surgery throughout the world.

A cure was not promised of course, but, if all goes well, Kairit will see improvement in her condition. She can have the therapy again in about a year and if we can fast track the ALS research data into meaningful treatment, perhaps we can find a cure for Kairit and other ALS patients.

Before she went into the operating room, she told Anto that if she came out of surgery and her favorite music was no longer Sting, Police and Billy Idol, he should have the doctor wheel her right back into surgery for a redo. Her mood was light and positive. Dr. Tamaschke told us that the minimum requirements for the stem cell procedure were two million cells at 80% viability. Word from the lab was that Kairit had 2.5 million cells at 88% viability. How could you not be optimistic?

In about an hour Dr. T came out with a smile. Everything had gone well. A small patch of Kairit's hair had been shaved...an incision made and a tiny endoscope would make its way in the "space" of the brain area carrying with it Kairit's stem cells to the area where the brain controls the motor neurons. I am oversimplifying this, no doubt to the horror of any brain surgeon, but I think it's good enough for us lay people. Suffice to say the "hole in the head" as Kairit joked was sealed and she was now going into the intensive care room where we could join her.

She received the first of two IV infusions this afternoon...some clear liquid that would help keep the brain from swelling. A tight green band was wrapped around the top of her forehead like a headband.

Kairit was awake and ready to talk.

"Anesthesia is not so bad," Kairit said. "I had a great sleep!" She said she felt fine but could feel the incision area and she had a slight headache...in her words "the kind you get sometimes in the morning, maybe after having too much wine."

The doctor came in to check on her and mentioned that Kairit could take home a dvd of the operation which shows everything going on instead the head. Kairit plans to show this to her doctor at Tartu University Hospital.

At about 2p.m. Kairit started drinking water...just about two hours after the surgery she ate a small sandwich...and a light dinner came about 6 for both Anto and Kairit. I returned to the hotel to Skype with my relatives in Estonia and my family in Los Angeles. News travels fast these days...

It is now nearly 9p.m. Anto just called from the hospital where he is spending the night. The doctor had checked in a couple of times. During the last visit she removed the tight headband revealing a small bandaid over the incision. Not much hair had been cut according to Anto. A nurse also took her vital signs...Kairit had the slightest temperature which we had been told could happen and was normal following such a procedure. She was given medication and would receive another dose at eleven. Kairit had also slept, used the bathroom, and was feeling okay and just a bit tired.

Being in the future is exhausting for all of us. Good night...sleep tight.

Anxiety and Anticipation at 2 a.m.

Can't sleep...My mind can not settle thinking about Kairit's bravery and others who deal with ALS or any motor neuron disease.

After dinner Kairit fell just outside her hotel room. Fortunately she did not hurt herself too badly...a little bruised on one arm. Anto had just opened the door but before he could reach her, the muscles, worn out after today's activities simply could not hold her any longer. I think of how active Kairit was prior to this disease. My Aunt Geri was, too...so are the men and women of the military who seem to contract ALS far too often. What causes the motor neurons to fail? How do we stop it before the muscles atrophy? Is stem cell treatment the answer? Is there something else? We need answers quickly. That takes money for research.

Kairit's friends and family in Estonia have wings on their shoulders for the donations they have raised and given to help her try the treatment she will have today. There are so many people who need help and who want to live. They deserve a chance, too. Maybe the big pharmaceutical companies don't put enough into research because there's not enough money in ALS for them. Most patients die rather quickly compared with say, a cancer patient. Do I sound cynical? It must be the late hour.

In the Name of Luck

One phone call can change everything. Our free day exploring the lovely city of Duesseldorf went up in smoke after Dr. T called to say she had gone over Kairit's MRI very carefully in preparation for Wednesday's procedure. She assured us that we did not need to be stressed but did want us to return to the clinic for another consultation.

One of the things that struck me about the X-Cell Center is how differently it operates from a doctor's office or clinic in the United States. You don't have to go through a number of secretaries or front office people behind closed walls with often-closed windows. There are nurses in the hospital area but the doctor comes in herself, even to the waiting area and greets you. Dr. Tamaschke invited us into her office but not before asking us if we wanted any water or juice.

It seems that Kairit has a sort of "sling" in the area near where the occipital implantation was to take place -- basically an obstruction that made it too risky to implant there. So we were back to either a lumbar puncture or a new option that was offered to her. Kairit did not need to make an immediate decision but a timely one was necessary. Dr. T said Kairit could undergo stem cell implantation via neuroendoscopy. This is a surgery requiring anesthesia and a hospital stay for 48 hours. Dr. T. has done over 600 of such operations during the last 10 years, many on children.

Needless to say, the thought of brain surgery can take one's breath away. However, as Kairit, Anto and I processed the explanation of the procedure and the potential of the help it might bring, we decided a leap of faith is sometimes needed in the face of dire circumstances. I asked Kairit how she felt after the doctor left us alone for awhile so Kairit could ponder her decision. She said now that she was here and despite the extra cost (an additional 10,000 euros) she wanted to try the newest procedure with results that have shown to be promising. No one said this was a cure but patients had shown improvement and could do stem cell treatment again. Perhaps in a year, new research would show even more promise.

When the doctor returned later, Kairit gave her the thumbs up. We then met a charming anesthesiologist who went through an intensive questionnaire with Kairit who had never had any surgery previously. He told her what to expect tomorrow and gave her the routine instructions prior to anyone having anesthesia. He promised me he would take good care of my niece.

Next, the driver took us to another facility nearby where Kairit was filmed as her walking and balancing abilities were tested. She also had to fill in a form asking many questions about the use of her hands, legs, etc. By this time Kairit was worn out physically and emotionally. Khalid Sousi, the physiotherapy specialist, showed us a film of a Norwegian man about 45 years of age who also had ALS and underwent the same procedure that Kairit is now scheduled to have. In the before footage, the man could not walk well and needed to hold the handrails. In the after (6 days later) he was walking much better without the use of the rails. Kairit was asked to return paperwork with the same questions and a film of her condition six months later if she were unable to return to Germany for the follow-up.

Just before the driver came to pick us up and return us to the hotel, Khalid asked if we knew the meaning of Kairit's name in Arabic. We did not. He said, "In Arabic, Kairit means lucky." I nodded, "From your lips to God's ears!"

The start of the week

This week began with great anticipation and emotional charge.

Kairit, Anto and I were picked up by a pleasant German driver, Reinhard Fischer. The X-Cell clinic was less than ten minutes from our hotel. It's located on two floors of a local hospital. We first filled in the paperwork.

Kairit had previously wired the funds for the procedure We then met with neurosurgeon Dr. Uta-Kristein Tamaschke. I wanted to ask her about her training and education but the efficient Dr. T put us immediately at ease. She clearly explained the procedures but recommended Kairit consider having the stem cell implantation in the occipital area at the base of the skull. She said that in her discussions with colleagues in other countries doing similar work with stem cells and ALS, the benefits of implantation in this area seem to outweigh the lumbar puncture. It takes a giant leap of faith to do any of these procedures but Kairit is determined to make the best use of the funds and time available to her. She will sleep on her decision.

There were others in the clinic as well including two boys who seemed to be in their teens. I spoke with a lawyer from near the Toronto area in Canada with a similar diagnosis as Kairit. He was first to have the bone marrow extraction and when he returned to the lobby reassured Kairit that it was relatively simple. I spoke with him for awhile. He, too, is frustrated by the lack of therapies for ALS. He was, however, grateful to live in a country where receiving healthcare was not a issue. I cannot imagine having motor neuron disease and no insurance.

We will rest this afternoon. Tomorrow is a free day. Reinhard secured a wheelchair for us and provided us with directions on the train into the city center. We will explore, eat, and take a day off from the ravages of a disease that needs research money and lots of smarts to fight it.

In Germany...

I arrived in Germany today, after a long flight from Los Angeles to London to Dusseldorf. Kairit and Anto met me here and we are just getting settled. There is a lot of anticipation, some fear, and definitely hope. Tomorrow, we go to the XCell Center where Kairit will get bone marrow extracted from her hip. The doctors and scientists there will then prepare the stem cells in a laboratory and implant them into her lumbar region on Wednesday.

Click here to read more about what the XCell Center is doing...

I've been taking video, photos, and notes and will be updating the blog with updates as to how the treatment and this weeks' journey goes. All we can say for now is that at the very least, it is keeping Kairit in good spirits and hopeful.

Notes following an ALS Association event last week

I went to the ALS Association Los Angeles Chapter event at the Skirball Center last Thursday night (Feb. 25). Billed as a "Decade to Remember," it highlighted the many achievements of the organization since it's early days, including legislation establishing a standard of care for patients, including those in the military. It seems those who serve our country are especially susceptible to ALS. Why is that? I want to know what causes this terrible disease.

My niece is the second loved one in my family to be diagnosed with Lou Gehrig's disease but the two relatives are not related. In the mid-1980's my Aunt Geri in Toronto was given the grim news. She was my mother's younger sister. I was working at KTLA News at the time so I wasn't able to get back to my hometown as often as I would have liked. I saw her at the beginning when she had trouble walking and used a cane. I visited a few times after that but she went downhill rather quickly, falling into a depression, and losing her will to live. The last time I saw her before she passed just after turning the corner on age 60, she was lying in a hospital bed, unable to move, refusing a feeding tube and the ventilator. I really had so little knowledge about the disease but I do recall being upset to know there was no therapy, no drugs, nothing available to stop or cure the problem.

I Skype with Kairit regularly so even though she is thousands of miles away, I feel closer to her than I did with my aunt. I also have searched the internet so I have a lot more information about ALS. Kairit is the youngest daughter of my half-sister on my father's side of the family. This is not a genetic link, merely bad luck to have this terrible illness strike twice.

One of the wonderful case workers, Jackie Neff, who is now retiring but has long been associated with the L.A. Chapter of the ALS Association was honored for her service at the Skirball event. She would go out of her way to do or get whatever it was that her patients and their families needed. Jackie exemplified the true meaning of a "Social Worker." I am glad that ALS patients in California have a caring and supportive network available to assist them. Many of the services are provided free by the ALS Association. I wish there were something like this in Estonia where Kairit lives. There is not. Even her doctor in Tallinn was insensitive to the diagnosis and what it meant. When Kairit asked her whether or not she should try stem cell treatment or the drug, rilutek, assuming she could get it, her doctor said, "I don't care what you do. You are going to die. Do what you want." I couldn't believe that a doctor could be so heartless! The patient and her family is left on their own.

Despite some moments of anger (why me?, why now?) and discouragement at the lack of therapy or a cure, Kairit has a positive attitude now. She has followed a healthy diet with lots of vitamins and minerals to boost her immune system. She has tried to detoxify as much as possible. Could it be there was some lead or other toxic substance in the paints she used to use for her work? She says she always bought the best paints, the most expensive ones...but who knows what unscrupulous manufacturers may have put in them? My aunt worked in the offices of the Reliable Toy Company. What toxins were there? Toys were made there...plastics, metals, rubber, and lots of other materials in an era when we did not know as much as we do today about air quality. Did whatever toxins there were cause the motor neurons to start failing? Is ALS cause by a virus or a bacterial infection? We don't know yet.

I want more answers. There is so much data that needs to be sifted through by those scientists who know about cause and effect...who can make educated guesses and hopefully find the answers we seek. That's why I want to raise the necessary funds to get them working together and trying something new. I want a cure for Kairit and all the other patients who have no hope at the moment.

A philanthropist who underwrites a baseball tournament that benefits the ALS Association and a family who raised $60,000 for the fight against ALS were honored at the Skirball as well. I left that evening encouraged by the warmth and commitment of the people in the ALS Association, content with the knowledge that even in today's economy, there are those whose hearts are huge. ALS kills but money for research can hopefully stop it in its tracks.