Thank you / Grácias

Thank you / Grácias

To all who were always by our side, to those who even across the distance kept us close; thank you for your support, for your understanding, for your generosity, for sharing part of yourselves and your families with us; for your continued hope and doing everything in your power to help Ale get into remission; thank you for mitigating the pain; thank you for your company.

We have always felt you by our side, and on these especially difficult days, we know you are here as well.

From the bottom of our heart, Thank you.

Dani (Ale's dad) 

A todos, los que estuvisteis siempre cerca, a los que a pesar de la distancia también estuvisteis siempre al lado nuestro; grácias por el apoyo, por la comprensión, por la generosidad, por compartir una parte de vosotros, de vuestras familias; por desear en todo momento y hacer todo lo posible  desde cada uno, para que la enfermedad de Ale remitiera; grácias por mitigar el dolor; grácias por la compañía.

Siempre os hemos tenido al lado, y estos días que son especialmente duros, también lo estáis.

Grácias, con el corazón en la mano.

Dani (papa de Ale)

Very short update...

This is just a quick note to let everyone know that I have every intention of continuing Alejandro's story.  It is still just to hard for me at the moment.  Many hugs to all.  And I hope to be able to continue soon.

Robin

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.

Getting back on track

I don't know how many times I've tried to sit down and write or have thought about it and haven't gotten any further than just that.  The thought of doing it.  I stare at the blank screen and my mind mirrors what is before me.  Later, lying in bed unable to sleep, entire entries form in my head and I think, "it's 3:00 a.m., the house is cold, I don't feel like sitting with the computer right now, I'll surely remember in the morning."  And then morning comes, the day begins, one thing leads to another and once again my mind is a complete blank.  And over and over.  Day after day since we've returned from Greifswald.

It was such an intense experience in so many ways.  It was the first time Alejandro has been away from his brother for so long and he missed both his brother and Dani so much.  He got through the first half of the cycle with hardly any side effects.  IL2 can cause very high fevers among a wide variety of other things.  Alejandro's fever never got too high and was easily controlled with paracetamol.  We had great advice from another NB parent whose son is undergoing the same treatment, but is further along than Ale.  Since the daily IL2 injections don't seem to really kick in until later on in the day, he suggested we do anything we needed to get done before the afternoon.  Great advice!  So Alejandro and I set up a routine, which consisted in hospital (for the blood work, IL2 injection, tests), back to the parents' house, and immediately out to get some air (for me) and do a quick errand.  It was perfect because we had 2 supermarkets within walking distance.  Each day we would go to get something at one or the other (poor mommy always seemed to be forgetting something so the next day we would inevitably have to go out again).  By the time we arrived back, Alejandro's fever would be on the rise, I'd give him his dose of paracetamol and we'd make dinner watch a movie in bed or play computer games and go to sleep.  All in all a good routine.

Carlos and Dani came to visit us over the weekend, when Ale had 2 days off from treatment.  It was such a treat.  We actually walked to the center of town and went to the Christmas fair.  And later on we made pizza for dinner.  It all felt so "normal".  When Dani and Carlos left on Sunday, it was heartbreaking.  Ale didn't want to say goodbye.  I felt so sad for him.  I am convinced we are doing the right thing, but I hate seeing him so upset. Carlos is one of the motors in his life that keeps him going and so vital.

The following day (Monday) we went inpatient at the hospital to start the IL2/antibody combo.  The first 24 hours were so hard.  Ale had the severe pain in his right thigh that I explained in my last post and then, gradually, things started to get better.  So much better, in fact, that he was off the morphine and on the portable pump for the antibody between Wednesday and Thursday.  This is not a common occurrence in the first round.  There are usually many more side effects and much more pain.  The doctors all seemed surprised, for example, that Alejandro did not require oxygen.  Many children on this treatment need to receive oxygen at some point and many have major issues with blood pressure and "capillary leak" which is like edema and can cause fluid build-up in the lungs.  Luckily, we didn't experience any of these things on this round.  However, each child is different and responds differently to each round and although the study points to each round being tolerated better than the previous one, we'll just have to wait and see if this is the case with Alejandro as well.  And, worrying mom that I am, I'm actually concerned about the fact that he didn't have all the horrible side effects, just in case this means the treatment isn't working as it should.

The only other side effect Ale experienced, toward the end of the cycle and right before we were able to go home, was horrible itching/burning in his bum and right on the tip of his penis.  It drove him nuts and only responded partially to the antihistamine they gave him.  It only really subsided once the antibody pump was removed at the end of treatment the following Thursday, once we were back in Barcelona.  There were moments in the hospital at night, after the antihistamine wore off (only after about 3 hours) and we were waiting for the next dose (not due until 3 hours later) that I wondered if this wasn't worse than the pain he had experienced the first day.  He couldn't stop scratching.  Any creams or ointments only made things worse and there was one night a day or so before we were discharged when he wanted me to scratch his bum so he could sleep.  Every time I would doze off he would freak out and beg me to keep scratching.  This lasted 3 whole hours until the next dose of antihistamine arrived.  But the odd thing is that he had no rash.  It seemed to be on the inside.  The doctors weren't very concerned and chalked it up to a less known side effect and, in effect, I was later told by another parent that this has happened to two other children during treatment, her daughter being one of them.  So there is some relief in knowing this, too, is a reaction to the antibodies and "normal" and, although horribly uncomfortable for the child going through it, at least it isn't life threatening.  Yeah, right, explain that to a desperate, itchy four-year-old.

And now, back in Barcelona, we have been trying to get back into some semblance of a routine.  Not too easy considering it's Christmas and we really have no routine to speak of.  We've been to the hospital twice now since we've been back.  Once to remove the pump and take blood samples to send back to Greifswald and once just for the blood work.  Tomorrow we go again just for blood work and to see how Ale is handling the retinoic acid (Accutane) he has to take for the two weeks leading up to the next round, which will begin on the 2nd.  I will also be speaking with his oncologist to see if she has any information for us.  It turns out that they discovered another area of MIBG uptake when they did the re-staging in Greifswald.  When they compared it to the imaging we had done at the beginning of November here in Barcelona, they found it was there too.  It is apparently very faint and they took days to confirm their findings.  But when the told me I literally wanted to kill someone.  How could they have missed this at our home hospital?  The doctors in Greifswald have tried to calm me down explaining that it is so faint that they needed the new image to compare with the one I had brought from November to confirm that it was there then as well.  And that without the new image it was very hard to distinguish from all the "background noise" inherent in the imaging.  But that once they knew where to look they were able to see it in the November image as well.  Well, this is not good enough for me.  We're not talking about some small town hospital here.  I understand what they explained to me in Greifswald, but I just don't understand how they could have missed this at our home hospital.  Maybe it's irrational thinking and I just need someone to blame because now it turns out that Ale has more disease than we have thought all this time.  Albeit, it is very faint.  But it's there.  In the bones in his thoracic region.  They still have not been able to tell me how long it has been there.  If it is new, from the lack of treatment in November, or if it has been there for some while.  They will study all the MIBG imaging since last February in Greifswald, and I have asked our oncologist here to do the same as well.  Maybe it makes no difference in the overall scheme of things, but I need to know.  Neither hospital thinks it is too important for the time being.  We'll know more after re-staging during round 3.  But they expect it should clear, if the treatment is working.  If not, at that point we will discuss changing strategies.  There are children undergoing this treatment with a much more significant disease load than Alejandro and they respond.  But just the fact of discovering there was something where we believed there was nothing is somewhat akin to being punched in the stomach while someone is pulling the rug out from under your feet at the same time.

This has a lot to do with my "absence" since returning.  I've had a lot to digest.  Apart from pretty nasty colds, they boys are well and enjoying the holidays and the time they get to spend together and with friends.  Santa brought Ale a new bike and hopefully we will take it out for a try tomorrow.  Today they are really just content to hang out on the sofa and enjoy a lazy day at home.  We've been seeing friends and the other night went to a benefit concert that was set up to raise funds for Ale's treatment.  It was a real treat.  Great music.  The boys had fun.  It leaves me speachless to see all these spontaneous fund-raising initiatives that our musician (and non musician) friends and acquaintances are involved in to help out with Alejandro's treatment costs.  I feel so indebted to all of you.  And thank you to all of those who wrote words of support while we were in Germany.  I wasn't able to answer most of you- Ale had the computer most of the time- but I just want to say here that reading your words and feeling your support has been so important while going through all of this.  So thank you for that.  Happy holidays to all.

Trust

This was going to be a quick post in facebook, but it seemed like it was getting too long...

Well, it was a tough afternoon/night.  After talking non-stop for four hours or so (morphine induced, I assume), Alejandro declared he was dizzy, closed his eyes and lay down (in that order) and slept for 3 hours.  At first, I was concerned because he's had two episodes in the past where his blood pressure plummeted and his reaction was pretty much the same, so I went to get a nurse to check him out.  His BP was perfect.  He was just wiped out from lack of sleep the night before and chatting up a storm for so many hours on end.  The boy in the bed next to Alejandro was thrilled to have such wonderful entertainment.

However, when Ale woke up about 3 hours later, he had intense pain in his right thigh.  Nowhere else, thankfully, but this was so incredibly painful he was completely overwhelmed.  I felt so helpless watching him suffer so much and not being able to do more than hold him and tell him how strong and brave he was and that by tomorrow he would be feeling better.  All he wanted for hours was for me to hold him with a firm grip on his thigh (it must have been like a severe cramp).  All this- and more- is to be expected from antibodies, but knowing this doesn't make it any easier.

Now, he is fast asleep.  He's been sleeping peacefully for a few hours and I'm just praying for the pain to be gone, or at least bearable, when awakes.  How do you explain to a four-year-old that this medicine is actually good for him?  That the pain is part of the medicine doing its job.  But somehow, I think he does understand.  I've asked him to trust me.  And to do that, I have had to put my trust fully in what the doctors are doing here.  And I've actually done that, which doesn't come easily to me.  It's a strange sensation.  One I haven't had in such a long time. Maybe, in part, it is due to the language barrier.  The nurses have limited English and my German can be summed up by "please, thank you and 'no meat'".  So if I don't trust them, I will make myself beyond crazy and will be of no use to anyone.  Trust.  I've asked Ale to trust me and in turn, I have had to do the same with those here.  It's a new sensation I will have to add to all the others this disease is teaching me.

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...