Still here...

Hi.
Yes.  We're still here.  And fighting hard.  How can I explain in a nutshell everything that has happened since my last post.  I just looked and it's from the end of Februrary!  A lifetime ago.

Before I get down to the nitty-gritty, let me start by saying Alejandro is still going strong with stabilized disease progression. To look at him you would never know what is going on inside that little 5-year-old body.  What's in there and what he has been through.  He is dealing with nerve damage from the 1st (yes 1st) progression he suffered during antibodies in Greifswald and fortunately it isn't as severe as it could have been thanks to the incredibley swift intervention of the oncologists, surgeons and a very dedicated physical therapist in Greifswald.  His sciatic nerve has been affected and he isn't able to flex his left foot upwards- it's as if he is constantly pointing the toes on his left foot.  But the feeling has completely returned (he had lost a lot of feeling before the surgery) and recently has been able to wiggle his big and little toes- impossible even a month ago.  We take this as a good sign.  Shit.  We'll take whatever we can get at this point.  We never would have dreamed he would be able to recover mobility in his toes and there you have him.  When I discovered this a couple of days ago I practically cried.  I kept repeating to him how wonderful it was, and he just looked at me as if I were from another planet and said to me with a very matter of fact tone in his voice, "But I do it all the time inside my sneaker."  Ok.  No big deal, right?

So, why am I starting off by telling you this?  Basically to let you all know that although we have had some major setbacks in the last few months, Alejandro doesn't seem to be affected by them.  He really is my heroe. My mentor.

And now, to pick up where we left off.  We were just about finished with the first block of RIST chemo and were getting ready for radiation therapy, which was due to take place during the first two weeks of RIST II (the oral part). This included scans, bone marrow aspirate, etc.  This was in March.  In the preliminary meeting with the radiologist I had to listen (as we always do before a new treatment commences) to all the possible side effects that could occur due to the treatment.  I have to add that this would be the third time Alejandro would undergo radiotherapy, and this time there would be overlapping fields.  But there wasn't much of an option due to the need for more localized intervention, and further surgery being out of the question.  In fact, the oncologists had to convince the radiologist that this was a necessary proceedure, side effects and all, to try to stabilize tumor progression.  She was initially against it.  So I sat and listened to how there was a high risk-10% possibility- of important side effects that could turn up anywhere from 5 to 20 years from now.  The most serious taking about 20 years to mannifest.  What can I say.  20 years?  Where do I sign?  Hello.  We're talking about relapsed NB with progression.  Of course I signed.

The following day was probably the worst I've had since that day in 2009 when we had to sit and listen to the original diagnosis.  Maybe even worse.  They had taken preliminary x-rays to set up the fields that would be irradiated and suddenly the radiologist called me into her office.  The look on her face sent me into yet another free fall.  With Alejandro by my side, I had to hold it together while the radiologist pronounced the words that no one had said to me as of yet.  "I'm so sorry.  So terribly sorry".  I was trying to keep breathing, holding back the tears.  What was going on?  What did she mean?

It turned out that Alejandro had suffered another progression in the four week span between surgery and radiation therapy, while on the RIST protocol.  The tumor was now infiltrating the head of his left femur and the dispersed NB in the sacral plexus was now an official tumor.  In only 4 weeks.  And on chemo.  And there I was, with Alejandro by my side playing, trying my best to pretend that it was just another meeting.  The one positive thing was that radiotherapy was still viable by readjusting the fields, and now the radiologist was 100% convinced that Alejandro should undergo radiotherapy.  But I'd never had to listen to those words before.  I know she meant no harm by saying them.  She later explained to me that she was taking our case very personally and was very affected by all of it.  The words just "popped" out.  They haunt me still.

Back in the ward I left Alejandro playing and then proceeded to completely loose it with the first doctor I laid eyes on.  I was so upset that I had to hear of the progression from the radiologist and not the onclologists.  More than anything else, I was upset with the entire world.  The oncologists had received the scan results while I was with the radiologist, but since I was there and she had her own x-rays as well, she gave me the news.  They did their best to calm me and convinced me that at that point all we could do was give the radiotherapy a chance as it was the most immediate form of treatment.  Over the following days we would sit and talk about what to do from there.

RIST was suspended two days before we were due to finish the first block.  Unnecessary toxicity.  We started radiotherapy on March 16.  14 sessions.  Monday-Friday.  Alejandro was a real champ.  The technicians fell in love with him and I was really only needed to take him there and back.  They were absolutely wonderful.  And, after the initial shock wore, off I was back to functioning as always.  And, surprisingly, as the days went by, Alejandro became more and more active.  He was even more full of energy than before.  This is surprising because radiotherapy tends to leave patients feeling tired and Ale, in addition, had had stomach discomfort the previous two times he had been treated.  Well, this time was completely different.  And his energy level really hasn't waned since.

As soon as radiotherapy was over, we were able to come back to Barcelona for 10 days while we waited to rescan.  This was the first week in April.  We arrived on a Thursday night. After arriving home and bringing the bags upstairs, Dani sat down with me to tell me that my father was dying.  He had been waging his own battle against pancreatic cancer for the past year and a half and had overcome some major obstacles.  But recently he had been having serious discomfort and it turned out that the cancer had spread.  When I arrived home from Greifswald he had already been admitted into hospice and was unconcious.  In Florida.  On Saturday I flew to Florida.  I arrived at the hospital arround 7pm and was able to hold my father's hand tell him how much I loved him and would miss him.  He was unconcious but I believe he heard me, as I also believe he heard and was aware of my sister and his wife who were also by his side.  My father passed away that night.  He was only 72.  I am so grateful for having been able to say goodbye to him.  He was, and always will be, a tremendous force in my life.  I was able to stay only a couple of days in Florida, and had to return to Barcelona.  A few days later we were back in Greifswald.  

At this point I was just functioning.  Going through the motions.  Smiling, of course.  But shell-shocked, I think.  I am still.  So so very much in so very little time.  I hadn't even digested everything that had happened with Alejandro.  A week later we had scans.  Stable disease.  The radiotherapy hadn't reduced the tumor burden, but at least it hadn't spread.  I spent a few days discussing with the oncologists the next possible step.  They wanted him to do tandem high-dose MIBG therapy.  This is a systemic, radioactive, targeted therapy that goes straight to the NB cells and hopefully destroys them without harming the healthy tissue.  The closest possible date was June 18, because they had to get a room ready in Nuclear Medicine to do the treatment.  It was decided that Alejandro receive a round of a potent chemo regime they use for induction treatment in Germany (called N6) to bridge the gap from then until the MIBG therapy.  At this point we have one certainty.  Alejandro cannot be without treatment for a prolonged period of time due to the aggressivity of his disease.  

Since the chemo could be done here in Spain we returned at the end of April.  The chemo was scheduled for May 7th and from the time we were in Greifswald until a week before treatment, Ale underwent an oral chemo regime to try to keep everything in check.


We were admitted in our hospital on the 7th for the 8 days of N6 chemotherapy.  4 of those days were chemo infusions of 24 hours/day. Surprisingly, Alejandro handled it extremely well and bounced back quickly.  While we were in-patient, we celebrated Alejandro's 5th birthday.  5 years old.  I can't believe it!!  We also found out that we will be able to receive the MIBG therapy here in Spain. Cruces Hospital, in Bilbao, is equipped to do this highly specialized treatment and they will be able to treat Alejandro.  He will be admitted on the 19th and treatment starts on the 20th.  The first week of June we were readmitted for two more days of chemo.  Just to make sure he remains stable.


The day Alejandro was discharged from the hospital, Carlos turned 9.  We were able to celebrate together at home with Chinese food and birthday cake.  What more could anyone want?!

And now, here we are.  June 17th. 1:50 in the morning.  On Monday, after school, the four of us will head to Bilbao.  Ready for our next adventure.


Thank you all, once again, for your support and especially for bearing with me.  I realize this is an incredibly long post.  I even left some things out to condense, but as you can see...
We will be in Bilbao about a month. I will do my best to keep everyone up to date with how Ale is handling this new treatment.  

Thanks for listening.

News from Griefswald- A change of plans

Ok.  I always seem to start with an apology for taking so long to update.  I am constantly writing entries in my mind and never seem to be able to get them down in writing.  Everything changes so quickly and so constantly that most of the time I'm just trying to "stay in the rollercoster", instead of being dragged behind, banging along the tracks, as my dad would say.

So much has happened since my last post.  I think that with Neuroblastoma, the only certainty is that nothing is certain.  Anything and everything can change so quickly that there is no time to truly absorb and process, only to accept and move forward.  Always forward.  With a smile.  Even when you feel the ground crumble beneath your feet, you smile.  You smile for your child.  You smile for those around you.  You put on your "everything is great" mask and you smile.  And you move forward.

Alejandro, Carlos, Dani and I arrived in Griefswald on January 1st to begin the second round of antibody treatment.  With the first IL2 injection on Monday the 2nd, Alejandro started having pain in his left leg.  The pain worsened as the week went on.  On day 2 he was already walking with a pronounced limp.  During the first couple of days the Drs. were pretty certain it was inflamation from the IL2 that was compressing the nerve that runs through the foramen where Ale has the tumor.  But by midweek, Prof. Lode saw Ale walking in the hallway and ordered an emergency MRI for that Friday- the same day Dani and Carlos returned to Barcelona for work and school.  And there it was.  The tumor, that had remained stable for almost a year, had progressed.  And since that Friday things have moved so fast that the first of the year seems like a lifetime ago.  

Ale immediately began the German RIST chemotherapy protocol.  This is a combination of alternating weeks of oral Rapamucine and Sprycel with IV Irinotecan and oral Temozolamide (for those of you who understand what I'm talking about).  While he began the treatment, the Drs. did a complete restaging.  MIBG confirmed the findings of the MRI but at least showed that the small lesion in his thorax was gone and there was no metastisis outside the progession at the relapse site.  Alejandro also simultaneously completed the IL2 and 7 days of immunotherapy.  

To make a long story short, the possibility of a surgical intervention was discussed and the surgeons here felt they could resect the tumor in the sacrum, which now was occupying part of the spinal canal, by going in through the back and removing part of the sacrum. For this part of the surgery we would have the head of neurosurgery.  And in the same procedure, they would then turn Alejandro and proceed to perform his fourth laparotomy and remove any tumor remaining in the presacral area, this done by the head of pediatric oncological surgery.  We spoke to our oncologist back in Barcelona and she agreed that the situation was now very different from the one we had back in November.  The idea was, of course, to resect the tumor, but now there was a risk of permanent nerve damage the longer we waited.  More testing was done.  Visits to the neurology department were made to have baseline information before surgery and on Februrary 2nd Alejandro underwent a 12+ hour surgical intervention to remove the tumor.

The funny thing is, and it is really not funny at all, that the riskiest part of the procedure went incredibly smoothly and was a complete success.  they were able to remove all of the tumor from the foramen and spinal canal and decompress the nerve.  However, what was supposed to be the "easy" part of the surgery turned out to be impossible.  After carefully going in from the front to finish removing any remaining tumor, what the surgeons found, instead of tumor, was NB dispersed in the sacral plexus and invading a nerve sheath.  The latter is what had appeared on imaging as an elongated piece of tumor.  They have never seen a NB presentation like this before and there was nothing they could do, surgically.  They had called the neurosurgeon back in to evaluate, but he confirmed that if they proceeded to resect the entire "pack" of nerves within the sheath, the consequences for Alejandro would be unacceptable.  

And so, Alejandro is now free of his unresectable sacral tumor, the sciatic nerve has been decompressed and may regain full function, but he has Neuroblastoma disseminated in his sacral plexus and invading a nerve sheath.  

We spent a week in intensive care and another 2 weeks in-patient on the onc ward so that Ale could begin the oral part of RIST without wasting any time, and then move on to the Irinotecan/Temozolomide.  He also began physical therapy and goes every day Monday-Friday.  The therapist is amazing and has a great relationship with Alejandro- even though they don't speak the same language he understands her and trusts her and actually does what she says.  I wish I could be so lucky!  

And, basically, the plan for now is to complete two phases of RIST back to back.   Phase I= 8 weeks of treatment alternating Rapamucine/Sprycel with Irinotecan/Temozolomide on a weekly basis, and Phase II=2 weeks Rapamucine/Sprycel, 1 week Irinotecan/Temozolomide and so on for I'm not sure how many weeks.  We would then move on to local radiation therapy and MIBG therapy.  In about 3 weeks we will be done with Phase I and undergo restaging while starting Phase II.  So, if there are no new surprises- there just can't be- this wil be the new plan.  Our oncologist in Barcelona is willing to work with the Drs. here in Germany, so I hope we will be able to return home soon.  We came for two weeks and now we have been here two months.   

But Alejandro seems to be handling it ok.  I know he's frustrated that he's still feeling pain in his leg and it's difficult for him to walk, but he's up and about as much as he can.  We even kicked a ball around in the hallway at the hospital the other day.  It will take a lot of P.T. to get his leg back in shape (in the event there is no permanent nerve damage- if there is we will also find a solution) and Ale is not interested in waiting.  Carlos, as always, is the best medicine and his presence alone is enough to get Alejandro up and walking.

Dani came back for the surgery and now both Dani and Carlos have come to spend the weekend.  It's so incredibly good to be together the four of us and will be so so incredibly sad when Dani and Carlos have to go back tomorrow and we have to stay behind.  Yet somehow I've kept myself going. There were the dreadful 24 hours right after surgery, when we had to hear the surgeons report, that I thought that this time I wasn't going to be able to do it.  It lasted just that.  Or not even, come to think of it.  Somehow.  Somehow we keep doing it.  It just happens.  You go on.  You breathe.  Clean your face.  Paste that smile back on your face, and you go on.