Sunday, November 20, 2011

An absolutly insane week

I don’t even know where to start.  This week has been so insane in so many ways, it has taken me this long to finally get my bearings and feel I can start to write about it.  Of course there were odd moments over the past couple of days that I felt I could use the blog to sort everything out, but I never had the time.

Tuesday we had all our appointments but one.  The neurovascular trauma surgeon who operated on Alejandro left on Tuesday for CHOP, where he goes every year, but of course no one had the foresight to schedule Alejandro’s follow-up visit with him before he left.  All in all, since Alejandro seems to be walking and running better with each day that goes by, with limited pain and numbness, this was really just a minor inconvenience.  And we did see the head of the department on Thursday.  He was very impressed with Ale’s progress and will do follow up visits every 3 months to keep an eye on his foot, which still hasn’t regained full flexibility- although it certainly isn’t slowing him down!

So, back to Tuesday.  We started the day on with Ale’s usual finger prick for his blood work and then went off to see the surgeon.  She checked out his scar and removed the adhesive stitches.  This time, his scar actually looks like a scar.  She explained that since this was the third time they opened at the same sight, and with more radiation therapy to boot, the tissue, fat and skin don’t lay the same way anymore.  So now Alejandro has some places where the scar is “puckered” and feels hard to the touch.  Hopefully it will improve over time but, obviously, this is not a big issue for us at the moment.  What the surgeon had to say, on the other hand, was a very big issue.  It turns out that although they were able to remove the entire visible tumor, an active sight still remains on the MIBG scan.  It is in a completely inaccessible part of the sacrum.  It is not a bony lesion, as I had first understood, but part of the original tumor.  What remains is very, very small.  But it is active and still there.  That was just so hard to listen to.  We knew going into this surgery that there was no way of knowing what the outcome would be until they were in there, but for those few days post surgery, before the imaging was done, we allowed ourselves to hope for the best.  To believe that they had gotten it all.  But at least this is some improvement. Surgery allowed for achieving what chemo and radiation weren’t able to.  And I’m glad we went through with it because now his disease burden has been lessened (which will be good for our next phase of treatment) and the oncologists also have an even
better grasp of exactly where the remaining tumor lies.

Then came the other part of our day at the hospital.  That morning, after Ale had his finger pricked and we saw the surgeon, we went to speak with the head of hematology-oncology to see if he had any word on our request for funding and to speak a little about Alejandro’s different test results.  The conversation with him left us felling utterly, completely, thoroughly flabbergasted, stunned, mind-boggled, confused and disoriented at once.  Basically, he told us that a study similar, if not identical, to the German study had just been approved in a hospital in Valencia and they were now waiting to get treatment up and running.  And that our hospital had taken the liberty of forwarding Ale’s information on to them to get him into their program.  That we should be expecting a call from them shortly to set up a preliminary appointment for this coming Monday and that we should cancel our plans to go to Germany.  We insisted that we would do nothing of the sort until we were sure that what was being offered in Valencia was, in effect, exactly the same as the German study, especially in regard to time frames and administration of the antibody.  Of course Valencia is right next door when compared to Greifswald, Germany, but we are not about to make a decision regarding our son’s treatment on proximity alone.  We definitely need more information.  And, if we hadn’t gone to his office, when were we to find out about this?  He told us that they had already applied for and received the OK for Ale undergoing treatment in another autonomous community!?!?  And here we were, waiting for our approval to go to Germany.  It’s still too much for me to get my head around.  When we asked if he had any idea when Valencia would be ready to treat Alejandro, he wasn’t too sure and referred us to our upcoming appointment with them.  I inquired about further treatment for Ale in the interim, in the event that we chose to go with Valencia, because it has been some time since his last treatment and we are concerned about the cancer spreading now that we know that there is still active disease.  He told us that for the time being Ale should be OK because he would be starting Accutane.  As far as more treatment was concerned, the oncologists still had to sit down with the other departments involved to discuss Alejandro’s case and make a decision.  Since it was still early, he said we would probably receive more information as the day went on.

And sure enough, by the time we had our regular appointment later that morning, things were already a bit different.  Once again, we were told that they would call from Valencia to schedule us for Monday morning (probably), but that they would not be giving Ale the Accutane because the Valencia trial does not allow for any treatment 15 days prior to starting the trial.  And if we finally choose to go to Germany, what then?  We’ll see, but, no Accutane for now.  And if the trial won’t be up and running for a couple of months and not a couple of weeks?  Ah, but since we don’t know- no treatment!  We did, however, express our intention not to cancel the German option at this point, until we had more information.  At least they thought it was a reasonable stance.  And then came all the doubts.  If this is the same trial, why does one require 14 days of Accutane prior to starting IL2 and the other prohibits it?  It did not sound like the same trial to me.  But then again, I’m just a mom, not an oncologist. 

On Thursday we received the call from Valencia to schedule us for the 28th.  Dani told the nurse that it would be impossible because we were due in Germany that day and our decision to go to Valencia or Germany had to be made beforehand.  At first, she didn’t seem to understand why we would want to go to Germany but finally offered us the 21st.  So now we’re buying train tickets for Valencia for this coming Monday, instead of the plane and train tickets we had been planning to buy for Germany for next weekend.  And the clock is ticking…

By Thursday our heads were literally spinning with the new information and we were really having a hard time managing to keep calm.  It seems since Ale’s relapse last February, nothing has turned out the way we expected only a few days previously.  First, we were supposed to go to Germany after the initial 2 rounds of chemo (TVD), which were incredibly hard on Alejandro and put him in the hospital for a week post-treatment on parenteral (intravenous) feeding each time due to mucositis, but did nothing for the tumor.  Since there was no response we moved back the date for Germany and went on to two rounds of Topotecan/Cyclophosphomide with 14 days of radiation therapy in the middle- also no response and also 1 week in-patient each time for neutropenia- and had to push our date for Germany further back.  Then we went on to Irinotecan/Temodal (4 rounds- hardly any side effects and again- no response) but we had a set date for treatment in Germany (Nov.1st).  Then the Germans saw that surgery was a possibility.  At that point I had already tried to hand in the paperwork to try and get public funding.  When surgery was scheduled for the 2nd, we once again had to move back to starting date of the treatment in Germany and adjust the paperwork for the funding.  Now, when the surgery is finally over, and Alejandro has recovered, and we have just learned that he still has a small amount of active disease, and the 28th is just a matter of days away, suddenly we have this whole deal with Valencia dropped in our laps and find out that, while our request for funding for treatment in another EU country has been paralyzed, we suddenly have approval to undergo treatment in Valencia.  A treatment we won’t know all the details of until Monday. It has just been too much. 

The one thing that has helped to calm us down in the last 24 hours has been the return of Alejandro’s “main” oncologist.  The one we have mostly been dealing with since relapse.  The one who found out about the antibody treatment in Germany for us and has helped us in pursuing it.  She had been away since the end of October.  When we just couldn’t deal anymore, Dani wrote to her on Wednesday night to let her know what was going on and to seek advice.  We wrote back and forth a few times on Thursday and since Friday was her first day back at the hospital, she told me to call.  The very first thing she said was to not do anything about Germany for the moment.  She gave me some specific guidelines for our appointment on Monday and said she would be available to the Dr. there by phone for any further information they may require.  Two of the most important, but not the only, things we spoke about were the “confusion” about administering Accutane, which we will inquire about on Monday, and the fact that Alejandro has gone a long time off treatment.  She was very clear on the fact that if, finally, we choose to go to Valencia, which most certainly would mean postponing treatment beyond the 28th, she wants Alejandro to do at least another round of chemo to keep the cancer in check.  She feels we have come this far without it getting out of control, and should take absolutely no risks to the contrary.  Obviously, we completely agree with her and feel relieved that she brought the subject up without our having to insist.  If in Valencia they do not accept this condition, we will definitly be going to Germany.  We are then scheduled to talk it all over with her on Tuesday. 

We finally feel that Alejandro is back in the care of someone who, first and foremost, has only his wellbeing as their priority.  Please, don’t get me wrong.  For my own sanity I have to believe that all of this, this tremendous upheaval over the past week has all been with Alejandro’s best interest at heart.  But there are things that just don’t make sense right now- although maybe they will on Monday, who knows?  The feeling that decisions were made without consulting us first, among other things.  I’m sure there must be a good reason for all of this.  And so I am trying hard to let it all go.  At least until Monday, when we will know for sure what is going on.  And so, once again, I leave you, and ourselves, hanging on the edge of a cliff as I repeat myself in saying, by Tuesday we will surely have the answers to our questions and know what we will be doing.


  1. can you run all this by the CHOP team? --Gig

  2. will definitly do so. just haven't had the opportunity. we are also curious about the ALK testing we had done there. still no word on results. we went with Germany initially because the COG hospitals had been waiting since last jan. for approval to run their own antibody trial for relapse. it was recently approved but we already had everything (we thought) wrapped up for going to Germany. We need this resolved yesterday! We also intend to run it by the German docs. They are on the same european comisssion (heading the committee on inmunotherapy) as the dr. in Valencia (NB committe) if it is all legit, they will have heard of what's going on...

    Thank you so much for your support!- -robin