4.53pm Sunday afternoon. Jaana is doing very well at rehab now. She is very willing and much more able to participate and with that, comes better result. The stem cell treatment definitely has had a positive effect. We are very much considering doing the larger treatment option during the summer to see even more profound effects. Anyway, all is well, but after over two and a half year of care taking both Parmi and me (specially Parmi) is having a few aches. Even though Jaana has lot a lot of weight, her lack of balance when she walks has to be compensated for by the one assisting her. Even though Jaanas balance is improving, this is obviously a heavy work load. We have another lady, Nancy, who helps out full time so that ease things up a bit.
The kids are off school now for two weeks so that is fun. We shall be resting here in Barbados and try to do a lot of sports etc.
At the end of April, I will do a trip to Europe of a week, and a wife of a good friend down here will stay with Parmi and the kids during my absence, even though this is a long way from now.
It has been very dry down here lately. The grass is all brown and there a fires raging all over the island. Yesterday we got a first 30min of rain in over 6 weeks, so this was very welcome.
Sunday, March 28, 2010
Friday, February 19, 2010
19th of February 2010
11.13am (CET) Friday morning. I am writing this from our hotel room in Flims. Me an the children return to Barbados via London tomorrow morning after a 7 day skiing holiday. Camille who had never stood on skis in her life is now woozing down red sloops and giggling with laughter. Ludwig and Jonathan picked up where they left off in Switzerland 7 years ago and ski very well. We have had a great time and I will post some picture later.
Jaana has improved her initiation measurably since the stem cell treatment. She puts a lot more into her rehab sessions and she is willing to try to speak a lot more than before. It is still early days so we shall see the full effects around 4-6 weeks from now. Early signs are very positive though.
Jaana has improved her initiation measurably since the stem cell treatment. She puts a lot more into her rehab sessions and she is willing to try to speak a lot more than before. It is still early days so we shall see the full effects around 4-6 weeks from now. Early signs are very positive though.
Thursday, February 4, 2010
4th of February, 2010
2.41pm (CET) Thursday afternoon. Jaana her separated stem cells reinserted into her spinal fluid yesterday. They found a bit less stem cells than hoped for, just 1,840,000 but they were of good quality. The neurosurgeon said though that the quality was more important than the quantity. Anyway, we will have to wait for between 4-6 weeks for signs of result. One can also repeat the treatment in the future as needed. Jaana felt no pain at all during the short 5 minute procedure. She is now resting in our hotel room in Dusseldorf, and tomorrow morning we fly back home to Barbados. Camille has been with us for the whole trip and Jaanas mother will join us on the trip back. Jaana has been in a great mood during the trip even though she is a bit tired now.
Kids and I will leave Barbados already after six days to go skiing. We will be joined for four days of my BFF Luca and my godson Philip in Laax/Flims. We are all very excited about the trip and some long awaited skiing.
Kids and I will leave Barbados already after six days to go skiing. We will be joined for four days of my BFF Luca and my godson Philip in Laax/Flims. We are all very excited about the trip and some long awaited skiing.
Tuesday, February 2, 2010
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.
Wednesday, January 27, 2010
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.
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.
Friday, January 15, 2010
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.
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.
Monday, November 30, 2009
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.
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.
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