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 way.  Easier 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 Barcelona.  While 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 thigh.  As 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 hours!  At least we're all home now and can start focusing on the next leg of our journey, which will be starting very soon...

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 28^th.  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 21^st.  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.1^st).  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 2^nd, 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 28^th 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 28^th, 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.

So, where to begin?  As the days have gone by and Tuesday draws near, I keep thinking that maybe it makes more sense to write after our appointments the day after tomorrow, for then we should have answers to a lot of our questions;  Did they get it all?  Is there still uptake?  What about the pathology report?  Is it the same kind of tumor?  Why didn’t Ale respond to chemo?  Why haven’t we heard back on the decision to fund the treatment or not?  But so many days have already gone by that if I don’t write until Tuesday these last few days will feel like the distant past and I’d like to get down at least some of what’s been going on.

The surgery went well, and over the last few days we have seen Alejandro grow stronger and stronger until he pretty much seems like the same Alejandro he was prior to surgery.  We have been very expectant.  Aware of every little wince, flinch of pain, limp, weakness or overall tiredness.  I’m sure we’ve driven him crazy, although we always try to mask our concern.  But he seems to be fully recovering.  Since one of the most important factors we all agreed on going into this was that it should only be done if there was the possibility of him coming out of it with no long-term pain and being able “to run and jump as always”, we have perhaps been overly aware of every little detail. 

The first days at home were tough because Ale was still having discomfort and weakness in his left leg.  But in the last two days or so it seems to be subsiding.  We took the kids to the science museum yesterday to see a dinosaur exhibit and Alejandro ran around like a maniac for the whole hour and a half we were there.  He only asked to be picked up to see the exhibits he couldn’t reach on his own.  And once again he’s back to being the last one to fall asleep at night.  I know I’ve said this before, but I am so amazed at his ability to bounce back.  He is the strongest, bravest and stubbornest child I know.  Even with his leg and incision bothering him, shortly after returning from the hospital he insisted upon riding his motorcycle and running on our way to do errands.  I physically had to stop him at one point when it looked like he was really uncomfortable to tell him how strong and brave he was, but that is was ok if he was hurting to take a break and rest.  He looked up at me and said, “I know” and then continued on his way.  I ended up having to tell him I was tired and needed to sit and have a coffee, if he didn’t mind, and that he could have something to drink as well.  To that he agreed.  So we sat for about 15 minutes in a terrace before going on to the next errand.  He just blows me away sometimes.  He is only four.

 

We are also anxious, as always, to find out the results of the scans.  This is the longest Alejandro has gone without treatment since relapse and that really scares me.  The chemo wasn’t shrinking the tumor, but it does seem to have prevented it from spreading any further, so we are hoping and praying that nothing new shows up.  On Tuesday Ale will be starting Accutane, so if the surgery has left him with no visible disease, hopefully this will keep another relapse at bay until we start the antibody therapy.  And no, we still have no news from CatSalut.  I have no idea if this is good or bad.  But we do intend to find out what’s going on on Tuesday.  The date is drawing near and the hospital in Germany has to be paid upfront before treatment begins.  Thanks to all the donations, we are close to covering the cost of treatment so we actually feel like we are in a position to put some pressure on them to rule one way or another and not keep us hanging.  We have now passed the 10-12 work-days they said was needed to approve or deny funding.  I would like to think someone would be able to tell us something at this point.

And so, here we are.  Waiting, waiting and waiting.  Trying to keep calm.  Trying to focus on the here and now and not get crazy about what may happen tomorrow.  Tuesday we should know more.

Hello, all.
I just wanted to touch base quickly.  When things get back on track I'll write more about all that's been happening.  I've been meaning to write for days and just haven't been able to find the time.  We're home from the hospital after only a week that somehow seemed like a month.  Ale is recovering amazingly well for having undergone a third surgery to the same area.  Although he has discomfort in his left leg and the scar that runs from above his belly-button to his pubic bone is still healing, today he actually ran a little bit on our way to the supermarket.  This time he was in surgery for six hours.  They think they were able to completely remove the tumor- we should know by next week.   We left the hospital yesterday after

having a last minute MRI (there was a cancellation and they called up to the onc ward and our oncologist sent us running down) so between that and the urine markers they tested for between Monday and Tuesday, that's two post-op tests down and only one more to go.  Another last minute cancellation has allowed us to be scheduled for the MIBG scan first thing tomorrow morning.  This morning was spent back at the hospital getting pre-scan iodine drops and the injection of contrast.  To say the least, our heads are spinning.  We should have all test results, including pathology on the tumor, by next Tuesday at our next appointment, when we will see not only the oncologist, but both surgeons who operated on Ale as well.   
Whew!  It always takes a few days to get back into the swing of things at home and since we're still running back and forth to the hospital, it's taking a little bit longer.  So, I promise, as soon as I can, I'll get everything down in writing.  And, as always, thanks for listenting.