Tuesday, November 22, 2011

Off to Greifswald we go!!

So, that's it.  The decision has been made.  Well, actually, it was made a long time ago and suffered a bump in the road along the way.  But it's settled.  Germany it is.  We met with the doctor in Valencia yesterday.  We learned a lot.  The trial that will be opening up is at a European level.  Valencia will be the only hospital in Spain that will be running the trial.  The problem is that it is not exactly like the one they are running in Greifswald.  There were a few fundamental differences that made us doubt.  One was the Phase I/II nature of the European trial.  The primary part of the beginning of the trial would be "dose finding".  They would adjust the dose to find the most effective/least toxic/best tolerated dose.  Also there will be 4 different cohorts (branches) of the trial for testing the administration.  Looking toward the future, this will be an important study, but we really feel we should go with the "sure thing" for Ale at this time.  Another factor is that although they consider him a candidate in Valencia, and he would probably be the first child treated, the final decision on candidacy is made by the director of the trial for all the European countries involved.  We could run the risk of him being rejected- for whatever the reason- and then find ourselves missing out on the trial all together.  The third, and ultimately deciding reason was the fact that although the trial has been approved, the participating hospitals have not yet received the antibody and don't know exactly when that will be.  This would entail having to treat Alejandro with more chemo while waiting for the hospital in Valencia to be able to start antibody treatment.  This was also our oncologist's feeling when I ran the information by her this morning.  We already have a start date and Alejandro is already accepted in Greifswald.  So, off we go!  Treatment starts on the 28th- next MONDAY!  And we have yet to get our plane tickets...

As for funding... since Europe will be running a trial similar to the German one, and since they paralyzed our request in lieu of this new trial, we probably shouldn't count on any kind of financial assistance (although our oncologist will still try to persuade them based on the differences in the trials and not the similarities.  But, as I said before, thanks to all the fundraising and donations, we will be able to make the payment ourselves.  Thank you thank you thank you thank you.  To all of you.  For not only your financial support, but especially for your emotional support in everything we've been going through.

And, as for the children.  The day yesterday was nuts.  Carlos had slept at a friend's house so they could take him to school while we traveled to Valencia.  We got up at 6 so we could get going by 6:30.  When we went to get Ale up he was warm.  We got him dressed anyway and I tucked away a thermometer just in case.  We took the train and got into Valencia at 10:30 (1/2 hour delay due to rain) and went dashing off to the hospital for our 11:00 appointment.  By this time Ale definitely had a fever.  We saw the nurse briefly and she sent us down to administration to get the paperwork for the transfer out of the wayEasier said than done.  While the doctor and nurse were expecting us, hospital administration was not.  They had not received the corresponding paperwork from Catalunya and were insisting that we did not have an appointment with the doctor!  But we do, I insisted.  She is waiting for us upstairs as we speak.  A LONG time and a call to our hospital later, we were finally upstairs.  Ale was NOT a happy boy.  Between the fever and the fact he was scared, he was a mess.  By the time we finally saw the doctor, it was past 2.  We left her office at 3, went running down to the day hospital for a dose of Tylenol and then we were off and running to the train station to catch the 4 o'clock train back to BarcelonaWhile we were on the train, halfway home, we received a call from the friend who had picked Carlos up from school to take him to soccer.  They were in the emergency room at the medical center.  Carlos had hurt his knee in school and couldn't walk.  Thankfully, nothing was broken, but he is now bandaged from his ankle to his upper thighAs if that wasn't enough, they sent him home without any crutches!  Our friends wheeled him home in a wheelchair which we then used to get him back to our house.  

Today I was able to rent 1 crutch and will get the second tomorrow.  (Don't ask!)  Then, he should be able to go back to school.  On Friday afternoon he has the follow-up appointment with the orthopedics Dr. and hopefully they will remove some of the bandaging.  And Alejandro woke up this morning vomiting.  Once he was done he felt better and his fever was gone.  Since his defenses are up, I checked in with the hospital, but didn't need to bring him in.  So, all in all it's been a very hectic 24 hoursAt least we're all home now and can start focusing on the next leg of our journey, which will be starting very soon...


  1. Always good to have a decision made! We'll be checking in with Debbie/Lois along the way -- good luck, take care. --Gig

  2. Never a dull moment! It is hard to believe the treatment starts so soon- i feel so grateful for all of the support you have received a that the treatment is possible because of the donations is just amazing. Hug those boys and big kisses from aunt Debbie!

  3. I just sent a message to Joe Smith (drummer) who's now living in Berlin with his new wife, Nadja. Maybe they could help somehow.

  4. Molta sort! petons