21st of September, 2010

2.54pm Tuesday afternoon. Just a small update. I met with Jaanas local therapist this morning, Giselle, who was with us up in Germany and in Sweden. After I left Jaana and Giselle up there, at Jaanas first occupational therapy session after the operation, she was asked if she wrote. She then without indicating anything, leaned over the desk, picked up a pen and did this:




Giselle was amazed! Two years of trying to get Jaana to write and this just 4 days after her stem cell treatment! Lets hope it is continuing ...

20th of September, 2010

6.26pm Monday afternoon. Jaana is getting a lot better in her speech! She is now willing and able to to talk on the phone. It is not a sound without some difficulty to understand sometimes, but the difference is very much noticeable. She has her phone next to her in bed and readily answers when I call every time and answers questions, not only by 'yes' and 'no', but also with her own words. It is great to hear about all friends and relatives visiting her as they days can be a bit long after her therapy. Ritva, Jaanas mum, is there every day and walks a picks up food at a close by Hotel, should she not desire the in house selection. Deserts and chocolate seem to be consumed at the same rate as usual. Her mobility, seem also to improve but maybe not as noticeable as her speech. That said though, I saw a improvement in her balance even in Dusseldorf.
Parmi will come back home in eight days. She is very much missed and her return will be much appreciated. Upon her arrival I will stay for another five days or so before embarking on a long journey which will end with me bringing Jaana home around the 11th of 12th of October.
Ludwig is doing fine in Lugano. He does not even call that much, but seem to have found himself a great place. He really is stepping up a notch and have to organise his life a lot more and by now I am sure he has tied more ties than I have in my entire life...

7th of September, 2010

5.58pm Tuesday afternoon. Jaana has had her first rehab session at humlegarden today. I spoke very briefly with Giselle, her Barbadian therapist and it was more of a get together and evaluate sessions, so I will write more when I know.
Meanwhile, Jonathan, Camille and I have arrived safely in Barbados a few hours ago. It was clearly the right decision for Jaana to stay 5 weeks in Sweden as it is stinking hot over here. In a few months it will start to cool down, but know we are all gasping for air.
More later...

5th of September, 2010

3.05pm Sunday afternoon. Jaana is now showing improvements already. Her left side of her body, which has been very stiff and let her almost unable to lower and control her arm, is now back. She can raise her arm, extend it and more importantly, afterwards relax it. What is needed now is a intense, massive amount of therapy and hard work. In addition, she has not been crying at all and her mood seen far better than before. Balance is marginally better but is showing improvement. The next 2 months are critical for her improvement.
For all her coming visitors, please play memory games, always let her answer with words, show old pictures and so on. Enjoy her company as I am sure she will enjoy to meet all friends again. Tell fun, nice things and minimize depressing ones, as it is the least thing she needs. Visit her, bring new borns which will make her happy. Very important is that you only visit her if you are in good health as she does not need an infection after her operation.

4th of September, 2010

6.13pm Saturday afternoon. Jaana is back in the hotel! After two days at the hospital, she is back resting in the hotel. She as been a bit dozy after the operation, but is now back to the same level of consciousness as prior to the operation. Now it is time to change the status quo and for the improvements to start. I spoke again to the surgeon and he is very happy about the operation and her recovery. Jaanas therpist form Barbados is here now and has been with with Jaana in hospital all the time since she woke up. I will report before we leave Dusseldorf for Sweden. My next profession is going to be travel agent...
To all of you sending messages, emails, writing on the blog or phoning (not so many, thanks for that!), Jaana and I would like to express our deepest gratitude. Fantastic to see all support for us. Thanks!

2nd of September, 2010

Noon Thursday. Jaanas operation is done! She came out of the operating room 10.05am CET and is now and for the next 24h in the ICU. This to monitor her state so nothing goes wrong and there is no bleeding.

Jaana, my dear wife, you are a true beacon of life spirit, values and bravery. When we kissed 'so long' just before your operation, I know you were full of fear. As we shared some tears, I know we both had the same thought. With this fear, you still went ahead and completed your treatment. This takes bravery to a level I hope I one day will have. You are an amazing wife, my best friend and the best person throughout I ever met. I want you to know that as you are recovering.
Now, the difficult and dangerous part is over. It is now time for hard work again with as much training as you can. I have no doubt, that with this behind us, you will excel in your recovery. Your own stem cells will now start to do their magic and let's hope for a lot of it. Happy 1th anniversary my dear Jaana.

Parmi, you know that you are part of our family. I told you so many times, and I mean it now more than ever. Without you, both Jaana and me, would not have coped the way we have. You are fantastic! I hope you know how much you mean for all of us. I wish you a nice holiday and look forward to welcome you home soon again.

31st of August, 2010

5.13pm Tuesday afternoon. Time for a short update. Today was a rather busy day. First Jaana had some blood draw for normal blood test etc, then bone marrow from both her hips were drawn. Different from last time, this was a bit pain full, but extra marrow was drawn to make sure there would be enough good stem cells for the surgery on Thursday. After this, she rested a bit and then there was a meeting with both the anesthesiologist and then the neuro surgeon. Both of them described in detail the agenda for Thursday. Now we are back in the hotel for her to rest. Tomorrow it is back to the hospital for MRI scans to assist the surgeon on Thursday so the can do this with the highest accuracy possible. I will keep you updated on Thursday after the operation which is scheduled for 9.30am CET.

27th of August

9.07am Friday morning. As we are packing up for the summer and preparing our departure, I will not write anything more for a week. Therefore I would like to communicate the next scheduled events concerning Jaanas stem cell treatment.
On Monday the 30th of August, Jaana, Parmi and me fly to Dusseldorf. On Tuesday bone marrow from Jaanas hip will be extracted. On Wednesday there will be MRI, PET and CT scans and the stem cells will be separated from within the bone marrow. Thursday is the critical day. The stem cells will be put back into Jaans brain through neuro endoscopy. This is done under full anesthesia and even though it is done regularly and weekly at the center, it is not a small thing. To my understaning, the general idea is to be as quick as possible and be as non-intrusive as one can. The operation should not take longer than 20-30 min if everything goes well. So for all of you, Thursday is time for thoughts and prayer for Jaana. I will write as soon as possible after she wakes up. Her occupational therapist, Giselle, will come from Barbados and talk to the center about special training after the operation. I will be in Lugano on Friday to help Ludwig in this new school and will take Camille and Jonathan to Dusseldorf on Saturday. Jaana will be in the hospital until Saturday when she will be at our hotel for 2 nights. On Monday we fly to Sweden where she will undergo intense therapy at Humlegarden. Giselle will come up to Sweden to instruct the center about Jaana, what she has been doing for the past 24 months, how to treat after the operation and be close to her. Jonathan, Camille and I will fly home to Barbados on Monday/Tuesday where they will be a few days late for school.
Now, I think that is as much as I can tell you right now. So, for Thursday the 2nd of September, which is Jaanas and mine 15th anniversary as well, she will be needing everyones thoughts. Not the present I had in mind, but I hope it will be the best one I ever gave her.

9th of Auagust, 2010

3.11pm Monday afternoon. This has been the longest break between postings! Reason being, there has not been to much to report. However though, now I would like to announce that Jaanas is doing her second, and a bit larger, stem cell treatment in Dusseldorf at the end of August. As Parmi is going to Indonesia for a month and Jaana needs a lot of therapy, stimulation and attention immediately after the treatment, she will be heading to Humlegarden rehabilitation center in Sigtuna, Sweden. There are other more prominent, and maybe better centers in the world, but she will not be close to friends. The social aspect, I have found, is even more important for her than anything else. Not having her children and husband close, will have an impact, but it will far less if all friends (not having a cold etc) will visit her as much as possible. should be able to do so, talk to her and let her answer with words, play a card game, play memory, ask questions, sudokos etc etc. Do anything which will stimulate her brain. It is very very important after her treatment to cease the opportunity when the new cells try to grow and reconnect damaged areas.
To coordinate visits and ask for best timings, please contact Jaanas mother Ritva Koistinen to make sure Jaana does not have scheduled therapy when you come as it will waste your time and she needs to concentrate fully on the task of getting better. However though, go and visit her! I will get back to you with more details before she arrives in Sweden.
The children are doing fine! Ludwig will start boarding school in Lugano Swizerland in September. Jonathan, Camille and me will return to Barbados just after getting Jaana to Humlegarden. Next year, we will most likely move to Lugano and spend the weekends at our home in Italy.
Anyway, need to go but all of you, take care and visit my wife in Sweden should you get chance!

10th of April, 2010

10.34am Saturday morning. Jaana's brother with family just left a day ago after having spent Easter here in Barbados. The kids had heaps of fun which included a catamaran trip with swimming with turtles, golf and some general beach fun. Unfortunately (but good for us as we had a long draught) it was raining for 4 days so that limited some activities. Anyway, Easter eggs, BBQ and all good in the end.
Jaana is doing fine. She is doing small steps forward and I am sure as many of you have not seen her for a long time, you will notice many positive changes next time you meet her.
Kids are back to school on Tuesday. Driving starts again, but a bit more peace and quite around the house.

28th of March, 2010

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.

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.

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.

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.