How quickly the time
and it goes uphill. :-)
What happened last month?
On day 100 (mid-December) we were quite optimistic, and the blood levels were by then quite ok
of the specific T-cell that is a small special part of the white blood cells - were in mid-December to 70% new (donor -) cells. They rise only slowly, really slowly, but they rise. Good thing needs to be a while.
On day 100, many studies were in the program. EEK, ECG, echocardiography, etc at the Höhrtest Ärtzin meant, Philipp hear so much that he even hear the grass grow (a bit macabre - but that's just Spiatlsleben)
Philipp is it better every day, approved But freedoms depend very much on each of the investigating physician.
Some doctor is very careful and allows only very few things that are on the next check-up in the hospital with another doctor, with the same blood levels a lot more things allowed.
mid-December, it says that we will talk about until January's school go on February, another health care professional before Christmas but allows us to initially only 1 hour per school day and only stress-free. Philip will soon enough and it will increase even at 2-4 hours, 2-3 times a week.
Philipp often decides himself what he and we trust ourselves and what is not. We were in the Christmas holidays and again in the cinema, in the last row, so we coughed from behind and no one can stop in the afternoon if not too much was going on at the cinema.
Then the check-up came at 30.12. We know the results of day 100 (11.12.2008) and was not quite so positive. The T-cells have fallen to 62%. The WBC are rising only very slowly and were never since the Tanrsplant of 3000 are now fallen to 1700.
It prepares us for further action. If the cells continue to fall, it would be possible for Marie-Therese to remove blood and filter out only the white cells, and to give Phil. The "new" white cells to recognize the old cells as foreign and Philip eat them together.
Because you but it can not dispense so fine GVHD arises because again - attacking the other organs such as skin, gut and liver - donor effect on beneficiaries. So once again immune blockers and after construction, etc. .. The matter would push our optimistic schedule by 6 months back.
We were so busy on New Year's Eve quite thoughtfully and with us and therefore have nothing written in his diary.
On 8 January was a sister to Mobile patch changes and catheter flushing at home, and on Friday 16.1. we were back to control in the hospital and experienced consistently positive results.
The results and findings from 8.1. are again heavy fine. The donor cells are grown to 92% - hurraaaa - the WBC are just over 4000, ie almost normal healthy values.
all be back on track, the joy was great. We had a very detailed conversation with the great Oberärtzin the SCT follow-up clinic and are happy again.
Many small details in the complicated blood counts are still not quite up to normal, but quite good values correspond to the day 120th The skin will slowly back to normal. No more delicate baby skin on the hands and soles, the skin gets a healthy color and slowly becomes elastic and smooth.
provision was to Philip on Friday also equal vaccinated against the flu and we get a vaccination plan for the next 3 months. Sample all the basic vaccinations be rescheduled as well as a Neugebohrenen. Although he has taken over parts of the immune system of its Schwesetr, but we know that this is too little to counter. So now every 4 weeks Phil gets two multiple vaccinations. Currently, he may only totgeimpft, after 1-2 years can begin live vaccines.
comes from today's perspective, then 2 times at an interval of almost 2 weeks, a sister to us for the mobile home blood collection.
Philip must again until late February / early March (day 160) to control the hospital. As another bone marrow biopsy is in the log. If the blood levels remain so well developed in this train comes out also (finally) the venous catheter. Thus, Philip could shower a week later back to normal and needs no more annoying catheter care.
Philip's attendance at school must be immediately increased as well. Depending on his health, he will decide for themselves what is to create physically.
Although he may still not use public transport, that is, we are again called for a new daily schedule to organize. In the early Philip by car to school and on call at lunchtime or the afternoon pick up.
So slowly the normal daily routine. Prohibitions remain public Bathrooms and large gatherings, restrictions remain for some food. So still only boiled, no lettuce, no nuts, no salami usw.etc ... The taste buds are increasingly normalize. Philip reports that now almost taste all things back the way he was used before. He has also increasingly re-taste and fancy's cooking. A true gourmet and fine tip precisely. :-)
Another thing pleasing:
end of December, the Health Fund has approved our cure.
We are all April in a family follow-up clinic in the beautiful Black Forest and hope all in the 4 weeks to get back his strength. Now, after 11 months we are all ziehmlich drained and exhausted, that's reflected on the mood and mind.
We desperately need a charging station for the mind, soul and body.
So now it's again become a longer text, but we are doing now better. :-) After
things change no longer quite so quickly, we will probably sign in the diary again only in March after the day 160 investigations before the cure.
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