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...