The papers are in!

I've actually had to sit and read my last few posts to remember just what's been going on the past couple of days and weeks.  I mean, I know what's been going on, but it's hard to remember what was today, yesterday, or a few days ago.  The days are so long and start out one way, then end another.  It's hard to keep track sometimes.

The boys went to sleep tonight without too much of a fuss.  At times I feel badly because I've become so much of a drill sargent of late.  Now, this doesn't mean I send them off to bed and that's that.  We have a story, Carlos goes up into his bed, I give Ale all his various masages- on his feet for pooping, then the special oil I rub in his scars from surgery and on his back (for the effects of the radiation therapy), then we lie down together, snuggle, he asks if he can close his eyes, I say yes and then he goes to sleep.  By this time, Carlos is already snoring- literally.  And tonight, I was actually able to get myself up afterwards and get into my own bed and it wasn't even 10:30 yet.  In my house, that is some feat!!

So, today...  For those of you not following us on Facebook, today I finally got all the paperwork in to the regional office of the Catalan Health System (the comittee that makes the preliminary decision regarding whether or not to approve public funding for treatment in another EU country only meets on Fridays).  It was my fourth attempt, and today was it!  I had had some problems with a couple of the documents that had to be turned in.  One was signed by our oncologist and not the head of the entire section.  That was easy to fix.  Then we needed specific information from Germany regarding treatment.  There was a misunderstanding and last week I brought them an e-mail, when what was needed was an official document signed by the Doctor there.  Not so easy.  I e-mailed him last Friday and finally called yesterday when I hadn't heard back from him and Friday was just around the corner.  I'm so glad I called.  He is so swamped with e-mail, he still had 25 to go before he would have gotten to mine.  I explained the situation and this morning I received the document I needed.

 At that point we were already in the hospital for pre-op bloodword and a check-up, as well as a meeting with the anesthesiologist.  Since tomorrow is Friday and we didn't wan't to miss another meeting of the committee, I was trying to figure out how we could possibly get everything done (the regional health office keeps government office hours and closes at 3:00).  We had blood drawn and went off to see the anesthesiologist.  It turned out she didn't have us scheduled because last Friday the hospital had been forced to close all administration, consults, operating rooms, and anything else not related to in-patient or emergency situations- just another of the brilliant cost-cutting ideas of the new Catalan health minister.
 
In any event, the appointment had been scheduled by our oncologist after Friday's treatment (at least out-patient chemo hasn't been cancelled- for the time being) but since there was no one in administration to schedule it in, we found ourselves this morning insisting upon the fact that we HAD to see the anesthesiologist no matter what, due to the upcomming weekend and then two holliday days- the the 31 (another cost-cutting-hospital-closing day) and the 1st (official holliday) with the following day, the 2nd, being the day of Alejandro's sugery.  And in the end, we saw her.  That out of the way, we still actually had some time before the results of the bood work would be in (and without the results there's no check-up with the oncologist- thank you again Minister of Health- the lab is now so under-staffed that results can take longer than 4-5 hours on given days) and today this actually worked in our favor.  I was able to charge out of the hospital, down the hill, grab the metro 2 stops, run down part of one hill and up another and made it to the regional health building in under 20 minutes!!  And since the secretary on the onc ward had been nice enough to print out my document for me (thank you- iphone) I finally had all the paperwork in order.  They took it in, gave me the official stamp and now it is officially OUT OF MY HANDS!  Qué será será.  I have done my part.  Now it is up to them.  We should have the preliminary answer by mid-week next week.  I myself will do my best not to think about this again.  One less thing to worry about.  Now I can focus all my energy on the upcomming surgery.  Oh, and then I charged back down the hill, up part of the other, took the metro 2 stops, ran up the hill to the hospital (all in all, I was out and back in under an hour) and we still had to wait 2 more hours before we saw the oncologist!!!

 Tomorrow we meet with the trauma surgeon so he can explain what will take place. My heart is in my throat.  But things seem finally to be falling into place.  I need to trust that this is the right thing to do and that it will go well.  Germany is still there, sitting on the horizon, but for now our energy lies with the up-comming surgery.  And now that we have spoken to the boys about it, we can address it openly.  Tiny bits of this weight I carry around seem to be falling aside.  Now, if only I could catch my breath...

I've been meaning to write for so many days now, but by the time I actually have a moment (when I'm in bed after getting the kids to sleep) I end up feeling so utterly overwhelmed by the day's events- large and small- that I'm too drained to actually get into words everything that's been going on.

And what's been going on?  On Monday the oncologists had their weekly meeting with the radiology dept. and they reviewed Alejandro's MRI from last Thursday together with the surgeons.  This included the trauma surgeon who I spoke about in my last post.  The one who is on paternity leave.  He went in just to review Alejandro's MRI.  I was so completely stunned that someone would actually do this that when I received the news on Tuesday morning regarding their findings I could barely let the poor oncologist speak.  I just kept telling him to please, please thank the surgeon for us.  On Wednesday I spoke to our main oncologist so she could explain everything all over again.

And what did they find?  The trauma surgeon feels confident that he will be able to resect the tumor.  They were able to get a good view of how involved the sciatic nerve roots are, and the good news is that they are not encased in the tumor, which is what they weren't able to determine from the other MRI's we've had done.  What I wasn't too happy about hearing is that they were able to determine that the tumor is exactly the same size it was after the partial resection in March.  All the chemo and radiation that Alejandro's gone through in the past months have not affected its size.  Ok.  It hasn't grown or spread, but that it hasn't shrunk or right out dissappeared is scary to hear.  I haven't been able to bring myself to ask the question, but I fear that Ale has become immune to chemo.  On the bright side however, the surgeon thinks that there will be no long-term side effects from the operation.  Maybe some weakness in Ale's left leg or some manageable pain for the first few days post-op, but nothing else.  So, last Monday, right after their meeting, they went ahead and scheduled the surgery.  November 2nd.  We finished this round of chemo today so now we have to hope Ale's blood counts don't drop too much, or they won't be able to operate.  And this is kind of like a once in a life-time deal because not only did the trauma surgeon go in on Monday, but he commited to doing the surgery on the 2nd as well.  After his paternity leave ends, he has to travel and even so, he has made this commitment to Alejandro. 

And I'd like to take a moment to explain exactly why this surgery thing is such a big deal for us and why reaching a decision has been so hard.  Neuroblastoma is systemic.  That is what makes it so lethal and why, in advanced, high-risk stages there is such a high rate of relapse.  When children complete front-line treatment they are considered NED (no evidence of disease).  This means that as far as they can tell with imaging and available microscopic testing, there is no evidence of disease.  But there is still no way to fully measure minimal residual disease (MRD) so one of our largest fears is always any minimal residual disease that could be lurking out of sight ready to cause relapse at any time.  This is why antibody therapy has been such a big breakthrough.  The idea is that if the body can be taught to identify the NB cells as foreign and therefore attack them, there is less chance of relapse.  When used in front-line treatment they have acheived a 20% reduction in relapse.  With Neuroblastoma this is a VERY big deal.  So, back to the surgery.  Knowing all of this is the reason it was so hard to make a decision regarding this operation.  If we knew that having the surgery would fully cure Alejandro, we never would have doubted.  What is a limp compared to the possibility of living a full cancer-free life.  Especially if Ale is only 4.  

But the fact of the matter is that with Neuroblastoma relapse, this is no longer a reality.  They can remove the tumor today and it may never come back, or it could return in a matter of weeks, months or years in another location and probably in more than one, as is usually the case.  And this is where the dilema arose.  Could we allow a possibly mutilating surgery knowing that the cancer could return at any moment?  It was literally making us crazy having to make this decision.  Then, last week, I was finally able to speak with our main oncologist and get her opinion from a strictly oncological point of view.  She agreed that any surgery that would leave Alejandro with any kind of permanant dammage to his leg or severe chronic pain- in her words "anything that would impaire his ability to run and jump as he does now"- was not acceptable, given the nature of his cancer.  Being free of the tumor obviously would put him in the best possible situation for receiving antibody therapy, but if it would cost him his leg, it wouldn't be worth it in the greater scheme of things.  This was actually calming for me at that moment because I felt we were working with medical, and not just emotional, criteria.  And then we received the news that the tumor can be resected without causing major, permanant dammage.  And the date was set. Talk about emotional rollercosters.  

And, since the surgery is scheduled for the 2nd of November, and we had been accepted at Greifswald for the 1st, we had to request a new date.  Just this Friday we received their reply and, if there are no further delays and surgery goes well- it will, it has to!- we will be going to Greifswald on November 28.  It is all so overwhelming.  We still don't know if we will receive funding or will have to pay ourselves and probably won't know until very close to the 28th.  But the fact that things are in motion again feels good.  And scary too.  So, as they say, one day at a time.  Focus on today.  On the little things.  And, one step at a time, we'll get there. 

I realize this is probably the longest, most rambling and most boring of my posts, but I really needed to get it out. So, thanks for listening and bearing with me.

Quick Update

Alejandro slept through another MRI.  I don't know how he does it.  We had it done this afternoon, so in part he was probably tired from the chemo this morning- day 3 of round 4.  This MRI was a little different than the ones we usually do.  It was specifically the sacral-illiac region of the pelvis.  They hope to get a better idea of exactly where the sciatic nerve is in relation to the tumor.  This, theoretically, will give the surgeons more information to go on so they can make the final decision regarding surgery, which has now been moved to the beginning of November, which in turn moves the projected date for Germany somewhere from mid-November onward.  

One thing we've learned throughout this journey is that each day is unique and whatever "plans" are made regarding the future, however immediate, are always subjecto to change.  Something as "simple" as a bump on the head or a fever over 100º can change a couple of days at home into a few days in-patient.  It used to make me crazy.  Somehow, this is a part of this new world we live in that I have grown accustomed to.  

So, now we are in the midst of another round of chemo, waiting to hear from Germany regarding the change of dates, and waiting again to hear from the surgeons regarding the possibility of resection.  Just about where we were last week.

There are a couple of differences, however.  In the past few days, we have learned that the trauma surgeon that will assist the onc surgeon is one of the best.  He is the one that does all the neuro-vascular reconstructions and comes highly recommended.  The only problem is that he is on paternity leave.  We have to hope that he's back by the time Ale finishes this round of chemo or shortly after, or we may have to forego surgery (at least here).  And, obviously, a big difference is that the cost of treatment is much more within reach than before (due to my tremendous screw-up with treatment costs and hospitals- again, I'm so sorry for the confusion!!). 

All in all, I guess that since last Tuesday things are pretty much back to "normal".  Waiting and doing treatment.  Hopefully we'll know more next week regarding the MRI and then it's back to square 1- meeting with the surgeons, making decisions, making plans for Germany... But for now, at least, we have a few moments of relative peace and it just feels so good.

VERY IMPORTANT!! PLEASE READ!!

I will get right down to it.
I have made a terrible, terrible mistake with the estimated cost of the upcomming treatment in Greifswald, Germany.  In the "How Can I Help" section of this blog I listed the estimated cost of antibody therapy as being approximately €300,000 when, in reality it will be €80,000.  An ENORMOUS difference.  I was juggling many different treatment plans and costs and put down the low-end cost of treatment (roughly converted to euros) at the Childrens' Hospital of Philadelphia ($400,000-$600,000) by mistake.  I do not want this to sound like an excuse.  I should have double checked my information before including it in the blog.  I was convinced this was the price for Germany and absolutely would not have included it otherwise. I realized the mistake yesterday going over paperwork with our oncologist when it turned out that we could not locate the price estimate from Germany among all our correspondance with them over the last months.  I immediatly wrote to Germany when we arrived home and received their answer today.  All I can say is that I was beyond dismayed and appalled when I realized my mistake.

We want to make very clear to all of those that have helped with your contributions to date that, if in any way, you are not comfortable with what has happened, we fully understand and will reimburse in full or partially (however you wish) anyone who asks us to do so. We can also provide the e-mail from CHOP stating their estimated cost and the invoice from Germany via e-mail for anyone who wishes to see them. We by no means want anyone to feel that they have been misled by us, or that we were trying to manipulate anyones sentiments.  It was never our intention.  

As of today, October 12, we have raised €26,384.53 and roughly $7,000.  We have yet to reach our goal, but obviously are much closer than before.

We understand that these donations come from the heart and that is what is most important in all of this, and is why we have always felt the need to be completely transparent with all that is happening.  We beg your forgivness and hope you continue to follow the blog.  We still need help in reaching our goal.  Now closer than before.

Thank you,
Robin and Dani

2:15 am

It's 2:15.  I should be going to bed now.  I've been going over and over and over the surgery thing and keep ending up in the same place- I have no idea what we should do.  A helpless feeling.  Ale is great, active, full of energy.  What if we make the wrong decission.  To operate or not?  Which is the wrong decision?  And the right?  How will we know?  I know I need to let this go at least for tonight and get some rest so tomorrow I will be able to think clearly when we meet with the surgeons.  It is just so hard to shake off this feeling of utter helplessness.  How will we know what is best for Alejandro?  Do we decide with our heads or with our hearts?  He just seems so "healthy".  We know he isn't.  We know the situation can change in a heartbeat.  But to see him, to live with him and play with him, right now you would never know.  That is what is making all of this so tremendously difficult.  Without that tumor inside of him he will be NED (no evidence of disease) and in the best possible moment for the antibody therapy in Germany.  But I am being assaulted by all the "what ifs".  Tomorrow we will see.  We will listen to what the surgeons have to say and we will make the best decision we possibly can.  Tomorrow I'll let you know.

Correction

Some of you have brought it to our attention that it was not possible to make transfers from outside of Spain.  It turns out that we had the banking information wrong for out of country transfers.  The correct information is now in the "How can I help" page.  Thank you and sorry for any inconvenience this may have caused.

News

Ok.  Where to begin?  I am so lost in the throes of vertigo that I have decided to sit down and write to see if somehow I can stop this feeling of falling so utterly and completely out of control.  Today we had bloodwork and a regular in-between chemo checkup at the hospital and today was the day we had to sit down and speak with the oncologist about the news we had from Germany.  Specifically, we had to discuss the fact that the German doctors concider Alejandro's lesion to be operable.

The day before yesterday, the surgeons from our hospital met to review the results from the latest MRI and yesterday they met with our oncologist to give her their impresion.  Well, as it turns out, our surgeons agree with the Germans.  They too think that the lesion is operable.  It wouldn't just be the surgeon that operated in March.  In addition, the head of the trauma department, who specializes in this kind of surgery (to the pelvis, back, regions with many nerves, etc.) would be there.  We have to meet with them next Tuesday to discuss the details, but if we decide to go ahead with it, Alejandro will be in the operating room by next Thursday, or Friday at the latest!!   Whew. This is an operation that entails certain risks that I prefer to discuss in more detail on Tuesday, once the decision is made.  But, basically there are two things that could happen.  A life-long neuropathy or a "limp" foot.  In the first case scenario,  if there is a very large risk of the neuropathy being significant, I imagine we will decide not to go ahead with the operation.  In the second case,  we will want more details.  I would also like to think that there exists the possibility of telling them to go ahead, with the condition of pulling out if they deem it to risky to continue with the resection.  At least in this case, they would be able to take some tissue from different sites to biopsy.  This would be very helpful in determining exactly what we are up against, since, although contained, the tumor doesn't seem to be shrinking any more and still lights up, however slightly. 

Neither is a decision that any parent should have to make.  What to give the kids for dinner, if they should participate in an after-school activity or not, if it's ok to have a sleepover or what video game is appropriate.  These are the kind of decisions I see myself capable of making.  Not if it is better to have life-long sciatica or a limp foot in exchange for a complete resection of a tumor that could grow and metastisize, or perhapse not.  And then, of course, there is Germany.  To provide Alejandro with the best oportunity for this antibody treatment to work, he should go into it with the least disease burden possible.  If this surgery could put him back into "remission" (No Evidence of Disease or NED in NB-speak), then, isn't it worth it?  Well, now I just don't know.  When I thought surgery was impossible, it all seemed so to clear to me.  Why can't we operate if that will bring Ale back to NED?  Well, now I don't know.  With this moment staring us in the face, just days away, I find myself left with only doubts.  We will have to wait and see what they tell us on Tuesday.  And in the meantime, I hope we can find the peace and tranquility we will need to make the right desision.

Thanks for listening

Ok.  So I was in a bit of a funk yesterday.  I have found that this blog not only allows me to keep everyone up to date on what's going on, it has become an outlet for me as well.  What I wrote last night has been bottled up inside me for a very, very long time.  I make no appologies for what I write.  It is what I feel and comes from a place so deep inside.

But... what I didn't get to write yesterday, and what I meant to when I sat down at the computer, is that Alejandro started school again yesterday!  Just recess.  But it was so wonderful to watch him playing with his classmates.  The school has done such a fabulous job of including him in his class.  Even though last year he only attended 3 weeks and yesterday was the first day of this school year, his classmates know him  and consider him part of their group.  He knows that there is a place for him there.  And yesterday, to see him running around with other kids his age... I have no words to describe how I felt. He probably won't go every day, nor will he be able to attend a full day for a while (and of course we have all these new treatments lurking around the corner) but while he is able, I will make sure he goes.

And while I was watching him run around and play on the slide in the schoolyard with his classmates from the window of the teachers' room, I decided to check my email.  And there was the answer from Germany!  Yes.  They will accept Alejandro.  The projected date to start is November 1st!  The only thing is all the preliminaries that they assume are or will be taking place.  The MIBG therapy will have to be set up quickly.  And this whole thing with the surgery!  I have wanted that tumor out of him for months, but everyone has told me that due to its location, it is inoperable.  That the nerves in his left leg could be irreversebly dammaged.  And furthermore, surgery is not often concidered for relapse for the simple reason that if they remove something from one site, it most likely will pop up again at another site.  But in Alejandro's case, the lesion has been contained to date.  All tests that are not imaging show up negative.  I have had this surgery thing going around and around and around in my head.  And now here are surgeons who deem it operable.  It really threw me off ballance.  And of course our oncologist is in Caracas until Monday and it is now the weekend.  Hopefully we will have a better picture by the end of next week.

And of course, the kids are fantastic.  Yesterday, my funky mood apart, was acutally a really good day.  We received good news.  Alejandro went to school.  And in the afternoon we went to a birthday party in the park.  The kids had a wonderful time.  We got to hang out and talk to other adults- what a treat!  So again, thank you so much for listening.  I will keep everyone up to date on what gets decided in the comming days.

Two years ago today...

Today is September 30.  The 30th of September.  It is a day that I live over and over and over again.  Ever since, two years ago today, Wednesday, the 30th of September, 2009, I brought my little boy to the pediatritian and our lives changed forever.  My little boy, my baby, the love of my life, the amazing gift I thought we would never have because we were only going to have 1 child, my miracle baby, so smart, so quick, so full of energy and vitality, my youngest son, Carlos's little brother, was diagnosed with cancer.  What is it about that damn word that is so hard to say?  Cancer.  Our baby.  Cancer.  Our son.  Cancer.  Carlos's baby brother that from the day he had just the slightest bit of conciousness as to the world around him, put Carlos on a pedestal and adored him perhapse even more than his own parents.  Cancer.  As parents, I think it is one of the very few things we are truly not prepared for.  I have been living with this for two years and still  cannot accept it.  Will not.  Oh, I live with it.  Yes.  Every day.  It has laid claim to a place in my life.  But I do not accept it.  I won't.  I can't.  My precious boy has cancer.  Stage IV high-risk Neuroblastoma.  And as I sit here writing, I hear and see the resident on duty in the emergency room as she gives me the news. 
Then Dani's face as I communicate the same news to him.  And then the following day, October 1st, when I had to somehow explain to Carlos just how sick his brother was.  And Carlos, just six years old, asking me if his brother was going to die.  And all I could say through the tears was that I didn't know but we would do everything in our power to make that not happen.  And then I took him to a friends house where he stayed for a week while we stayed with Alejandro in the hospital.  And our lives changed forever. 

And yet, here we are.  Still fighting.  Trying to stay afloat in a sea that does with us what it will.  We are thrown in one direction, then another.  When we think we have found our bearings, another surge comes along and carries us to a new place and we start anew.  What was valid yesterday, may not be so today.  For good and for bad.  We have been waiting to hear from Germany.  They contacted us today.  They will accept Alejandro into their antibody program.  There are some prior steps, however.  One is MIBG therapy.  They take for granted that we are currently doing this or are about to.  This treatment does not exist in Spain either.  We have to start making plans on Monday.  They also concider the tumor to be resectable.  !!?  Our hospital has not condidered this possibility to date since the initial partial resection in February proved risky due to the proximity to the sciatic and illliac nerves in the sacrum.  Has the situation changed?  Who is right?  The surgeons at our hospital will review the most recent imaging on Monday.  We will seek further opinions from CHOP and probably Sloan Kettering in New York.  Is this good news?  Yes, of course.  It seems that Alejandro will be able to receive the treatment he needs.  And the steps prior to that?  Once again, we will have to do some more waiting.   CHOP will be a good option for MIBG therapy, but will they accept Alejandro?  More questions to ask.  More waiting.

Thanks for listening...