2nd of February 2010

9.35pm (CET) Tuesday evening. On Monday they extracted bone marrow from Jaanas hip which took only 15 minutes. She said it did not hurt at all and is just very excited about the whole procedure. They have been very accommodative and professional at xcell-center and at 10.00am tomorrow, her stem cells will be put back through the Lombard puncture, just as planned. I will write again when Jaana is done with the treatment and before we leave on Friday morning.

27th of January, 2010

8.49pm Wednesday evening. Jaanas upcoming stem cell treatment at the Xcell Center in Dusseldorf (www.xcell-center.com) can be described as follows. On Monday morning, 1st of February, blood tests will be followed by stem cell collection from Jaanas bone marrow in her hip. The collection is done under local anesthesia and should not last much more than a half an hour. This has been known for some people to be a bit painful, but pain should recede soon after collection. During Tuesday, a government approved lab will separate the better stem cells from the bone marrow. On Wednesday morning, Jaana will undergo a Lombard puncture where a small amount of spinal fluid will be replaced with the collected stem cells. This procedure should not last longer than an hour or so, after which Jaana will rest in the clinic. Thursday is yet again just a day for rest and on Friday we will be leaving Germany to go home. The whole procedure is out patient, that is there is no need to stay at the hospital, but rather come in for the treatments.

As with anything in life, this is not a complete risk free procedure. However though, by eliminating the surgical procedure, the risk for infections will be kept to a minimum. This is also enhanced by the short amount of time actually spent at the clinic and most at the hotel. The other highlighted and more severe risk is that of potential cancer as a result of the stem cells multiplying in an undesirable way. With adult stem cells, research have shown that this risk is much smaller than with umbilical cord or placenta stem cells. It is true that this has been observed in trials with adult stem cells as well, but only when these have been allowed to multiply and grow outside the body for a lengthy period of time (6 months plus). This is not the case for Jaana, when the cells are not cultivated at all and placed with in 36 hours of collection. Hence the risk should be a lot smaller and I have not read any report of that this procedure has proven to have led to any tumor.

Benefits of these kind of procedures have been noticeable, but as the science is relatively young, I have not found any comprehensive report about results statistics (excluding parties with commercial incentives). The reason for this could be both the lack of more than tens of thousands procedures and the fact that they are done at many different facilities around the world. Saying that, from various sources on the Internet (commercial) and talking to Jaanas therapists who have first hand seen results of patients treated with adult stem cells, there are noticeable and remarkable result. One could expect in Jaanas case for her speech and balance to improve. As the Lombard puncture is placed further from the affected areas in her brain, benefits will be some what less and take longer time than if the larger surgery would be done. The surgery is still an option for when we arrive in Europe in June. As an indication from the center, the effect could be up to 50% better with the surgery, but this is obviously a huge guesstimate.

It is my subjective view, after reading as much as I have been able to, with Internet as the major source of information and with communicating with doctors (who all have their subjective view) that the benefits far out weight the risks. I find the risks greater that she will fall and hurt herself, choke on food or suffocating not having the energy to turn around in bed with her current condition. Any improvement with these issues, will dramatically decrease her day-to-day risks. Furthermore, her benefits to her mental improvements should this be successful can not be underestimated.

Finally, and possibly very important for Jaana, if I were in her situation after fighting for more than 2 years, and she had collected the same information which have been available to me, I would do the treatment in a heart beat. I suggest we all rally behind her and hope for her speedy recovery and for the best possible outcome from the treatment.

15th of January 2010

9.41am Friday morning. Happy New Year to all of you! It has been some time since the last post, but pre Christmas was quite hectic, as I am sure it was for everyone. Now kids are back to school and things are more or less back to normal. Jaana is continuing her daily fights of recovery, even though she is a bit lack luster for the moment. She does not give her best all the time and try to escape by wanting to run to the toilet during sessions. Anyway, the stem cell treatment will most likely first be done with a lombard puncture and not the surgery. This is an easier treatment and she would not have to stay in the hospital for a week afterward. As the weather in Europe is rather cold which would increase the risk of cold and infections, I think she will do the bigger treatment during summer time. For the lombard treatment, we are still waiting to hear when it is available to do (within a few months at the most). There have been other patients from Barbados who have done the surgical treatments in South America with good results and no complications, so let's keep our fingers crossed.
Kids are doing fine. I will take them for a weeks of skiing holiday during the mid term break. Where has not been decided as of yet, but we are looking forward to this.

30th of November

7.23am Monday morning. I have sent out requests to other neurologists and neurosurgeons who have assessed Jaana before to get a more complete risk/reward profile. As with everything there are always risks, so I think it is prudent to get as much information from resources not having anything to gain financially by their opinions. However though, get 10 people in one room (specially doctors, I have learned...) and you will get least 10 different opinions. Anyway, we are not in an immediate hurry, so we will take our time and get the best possible solution for Jaana. It is very encouraging though, that there is a method which seem result in vast improvements.
Kids finish school on the 11th already and it seems like they have already to slow down the pace with various activities such as plays and football games. It is also independence day here today which gives them 2 more days off.
Christmas is coming closer even though, as a European, it is hard to get the spirit with beaches and swimming pools.
The new bbq terrace is now ready and there will be suckling pig, tenderloin, chicken and rabbit on New Years eve.

13th of November

5.16pm (CET) Friday afternoon. I am writing a very late entry from Cannobio. I am on a short trip dealing with a few things back in Europe. Among others, I visited a centre called XCell Centre in Dusseldorf, Germany. They specialise in stem cell treatments, and are very positive that this could help Jaana. Since this is a rather new method (a few years), there is not so much statistics as from other treatments, but the result they have so far is very very promising. The most effective way to would be to take Jaanas own repair (or adult) stem cells from her bone marrow, purify them and then place them close to the effected areas in her brain. This procedure will generate the absolute best results and can do remarkable things. At this centre, they also treat other deceases (diabetes ...) so visit their web site should you be interested for friends or family. This could be a major break through and with significant improvements, even though a full 100% recovery of Jaana is less likely. As I miss my old Jaana immensely, I will put our hope and faith in this brilliant technology and pray it will a pivotal point in her recovery. After a successful direct placement, she would have to rest for just a week, but as it was explained to me, result will come very quickly, if all is well.
Kids are doing fine and Parmi as doing a marvellous work in keeping the home and family in order!

4th of October, 2009

10.15am Sunday morning. All good and well. Parmi came back two days ago from a one month plus vacation in Indonesia. Her travel back seem to have gone ok, but UK immigration had her for questioning for 20 minutes. Anyway, all fine now so no problem.
Jaana has been having therapy for some weeks now and is performing well. There are still long way to go before she walks, but everyone is impressed by her strength and she is still making progress. Many have the assumption that the window of opportunity for recovery after is shut after 12 months, but I can definitely confirm that she has made more progress after 12 months than before.
Kids have a good time in school. In two weeks they have mid-term break and me and the kids will head for New York for 3 days then onto Orlando and some parks. They are very excited and we are very much looking forward to the trip.
The picture is Jaana on her birthday 6th of September, with a friend of ours at lunch in Barbados.

13th of September, 2009

6.28am Sunday morning. As many of you already know, we arrived back in Barbados safe and sound. We had a good trip without any complications and Jaana has now started her therapy again. Her therapists noted the fact that her strength was of no problem and was even a lot better than before, but she needs to practise the techniques of walking a bit more. This includes moving your weights properly, moving your hips and controling balance etc. Yesterday she took two steps completely on her own walking up the stairs holding on to the railing. I might be too optimistic (certainly more than doctors and therapists), but I think she will walk with some aid again within 6-12 months or so. To do this she will need to focus a lot on what they teach her, but she certinaly has all attributes to succeed.
Kids are back to school and were happy to see their friends again. Ludwigs class had a lot of turn over though so he had many new faces in his class. Camille and Jonathan were more lucky and many of their friends were still there.
Parmi and Anna are still in Indonesia and will remain there until beginning of October. Jaanas mother is down here for another week help me out and I do have some more assistance cleaning etc.