Monday, December 26, 2011

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.

Tuesday, December 6, 2011

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 thighNowhere 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 betterAll 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.

Tuesday, November 22, 2011

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 wayEasier 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 BarcelonaWhile 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 thighAs 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 hoursAt least we're all home now and can start focusing on the next leg of our journey, which will be starting very soon...

Sunday, November 20, 2011

An absolutly insane week


I don’t even know where to start.  This week has been so insane in so many ways, it has taken me this long to finally get my bearings and feel I can start to write about it.  Of course there were odd moments over the past couple of days that I felt I could use the blog to sort everything out, but I never had the time.

Tuesday we had all our appointments but one.  The neurovascular trauma surgeon who operated on Alejandro left on Tuesday for CHOP, where he goes every year, but of course no one had the foresight to schedule Alejandro’s follow-up visit with him before he left.  All in all, since Alejandro seems to be walking and running better with each day that goes by, with limited pain and numbness, this was really just a minor inconvenience.  And we did see the head of the department on Thursday.  He was very impressed with Ale’s progress and will do follow up visits every 3 months to keep an eye on his foot, which still hasn’t regained full flexibility- although it certainly isn’t slowing him down!

So, back to Tuesday.  We started the day on with Ale’s usual finger prick for his blood work and then went off to see the surgeon.  She checked out his scar and removed the adhesive stitches.  This time, his scar actually looks like a scar.  She explained that since this was the third time they opened at the same sight, and with more radiation therapy to boot, the tissue, fat and skin don’t lay the same way anymore.  So now Alejandro has some places where the scar is “puckered” and feels hard to the touch.  Hopefully it will improve over time but, obviously, this is not a big issue for us at the moment.  What the surgeon had to say, on the other hand, was a very big issue.  It turns out that although they were able to remove the entire visible tumor, an active sight still remains on the MIBG scan.  It is in a completely inaccessible part of the sacrum.  It is not a bony lesion, as I had first understood, but part of the original tumor.  What remains is very, very small.  But it is active and still there.  That was just so hard to listen to.  We knew going into this surgery that there was no way of knowing what the outcome would be until they were in there, but for those few days post surgery, before the imaging was done, we allowed ourselves to hope for the best.  To believe that they had gotten it all.  But at least this is some improvement. Surgery allowed for achieving what chemo and radiation weren’t able to.  And I’m glad we went through with it because now his disease burden has been lessened (which will be good for our next phase of treatment) and the oncologists also have an even
better grasp of exactly where the remaining tumor lies.

Then came the other part of our day at the hospital.  That morning, after Ale had his finger pricked and we saw the surgeon, we went to speak with the head of hematology-oncology to see if he had any word on our request for funding and to speak a little about Alejandro’s different test results.  The conversation with him left us felling utterly, completely, thoroughly flabbergasted, stunned, mind-boggled, confused and disoriented at once.  Basically, he told us that a study similar, if not identical, to the German study had just been approved in a hospital in Valencia and they were now waiting to get treatment up and running.  And that our hospital had taken the liberty of forwarding Ale’s information on to them to get him into their program.  That we should be expecting a call from them shortly to set up a preliminary appointment for this coming Monday and that we should cancel our plans to go to Germany.  We insisted that we would do nothing of the sort until we were sure that what was being offered in Valencia was, in effect, exactly the same as the German study, especially in regard to time frames and administration of the antibody.  Of course Valencia is right next door when compared to Greifswald, Germany, but we are not about to make a decision regarding our son’s treatment on proximity alone.  We definitely need more information.  And, if we hadn’t gone to his office, when were we to find out about this?  He told us that they had already applied for and received the OK for Ale undergoing treatment in another autonomous community!?!?  And here we were, waiting for our approval to go to Germany.  It’s still too much for me to get my head around.  When we asked if he had any idea when Valencia would be ready to treat Alejandro, he wasn’t too sure and referred us to our upcoming appointment with them.  I inquired about further treatment for Ale in the interim, in the event that we chose to go with Valencia, because it has been some time since his last treatment and we are concerned about the cancer spreading now that we know that there is still active disease.  He told us that for the time being Ale should be OK because he would be starting Accutane.  As far as more treatment was concerned, the oncologists still had to sit down with the other departments involved to discuss Alejandro’s case and make a decision.  Since it was still early, he said we would probably receive more information as the day went on.


And sure enough, by the time we had our regular appointment later that morning, things were already a bit different.  Once again, we were told that they would call from Valencia to schedule us for Monday morning (probably), but that they would not be giving Ale the Accutane because the Valencia trial does not allow for any treatment 15 days prior to starting the trial.  And if we finally choose to go to Germany, what then?  We’ll see, but, no Accutane for now.  And if the trial won’t be up and running for a couple of months and not a couple of weeks?  Ah, but since we don’t know- no treatment!  We did, however, express our intention not to cancel the German option at this point, until we had more information.  At least they thought it was a reasonable stance.  And then came all the doubts.  If this is the same trial, why does one require 14 days of Accutane prior to starting IL2 and the other prohibits it?  It did not sound like the same trial to me.  But then again, I’m just a mom, not an oncologist. 

On Thursday we received the call from Valencia to schedule us for the 28th.  Dani told the nurse that it would be impossible because we were due in Germany that day and our decision to go to Valencia or Germany had to be made beforehand.  At first, she didn’t seem to understand why we would want to go to Germany but finally offered us the 21st.  So now we’re buying train tickets for Valencia for this coming Monday, instead of the plane and train tickets we had been planning to buy for Germany for next weekend.  And the clock is ticking…

By Thursday our heads were literally spinning with the new information and we were really having a hard time managing to keep calm.  It seems since Ale’s relapse last February, nothing has turned out the way we expected only a few days previously.  First, we were supposed to go to Germany after the initial 2 rounds of chemo (TVD), which were incredibly hard on Alejandro and put him in the hospital for a week post-treatment on parenteral (intravenous) feeding each time due to mucositis, but did nothing for the tumor.  Since there was no response we moved back the date for Germany and went on to two rounds of Topotecan/Cyclophosphomide with 14 days of radiation therapy in the middle- also no response and also 1 week in-patient each time for neutropenia- and had to push our date for Germany further back.  Then we went on to Irinotecan/Temodal (4 rounds- hardly any side effects and again- no response) but we had a set date for treatment in Germany (Nov.1st).  Then the Germans saw that surgery was a possibility.  At that point I had already tried to hand in the paperwork to try and get public funding.  When surgery was scheduled for the 2nd, we once again had to move back to starting date of the treatment in Germany and adjust the paperwork for the funding.  Now, when the surgery is finally over, and Alejandro has recovered, and we have just learned that he still has a small amount of active disease, and the 28th is just a matter of days away, suddenly we have this whole deal with Valencia dropped in our laps and find out that, while our request for funding for treatment in another EU country has been paralyzed, we suddenly have approval to undergo treatment in Valencia.  A treatment we won’t know all the details of until Monday. It has just been too much. 

The one thing that has helped to calm us down in the last 24 hours has been the return of Alejandro’s “main” oncologist.  The one we have mostly been dealing with since relapse.  The one who found out about the antibody treatment in Germany for us and has helped us in pursuing it.  She had been away since the end of October.  When we just couldn’t deal anymore, Dani wrote to her on Wednesday night to let her know what was going on and to seek advice.  We wrote back and forth a few times on Thursday and since Friday was her first day back at the hospital, she told me to call.  The very first thing she said was to not do anything about Germany for the moment.  She gave me some specific guidelines for our appointment on Monday and said she would be available to the Dr. there by phone for any further information they may require.  Two of the most important, but not the only, things we spoke about were the “confusion” about administering Accutane, which we will inquire about on Monday, and the fact that Alejandro has gone a long time off treatment.  She was very clear on the fact that if, finally, we choose to go to Valencia, which most certainly would mean postponing treatment beyond the 28th, she wants Alejandro to do at least another round of chemo to keep the cancer in check.  She feels we have come this far without it getting out of control, and should take absolutely no risks to the contrary.  Obviously, we completely agree with her and feel relieved that she brought the subject up without our having to insist.  If in Valencia they do not accept this condition, we will definitly be going to Germany.  We are then scheduled to talk it all over with her on Tuesday. 

We finally feel that Alejandro is back in the care of someone who, first and foremost, has only his wellbeing as their priority.  Please, don’t get me wrong.  For my own sanity I have to believe that all of this, this tremendous upheaval over the past week has all been with Alejandro’s best interest at heart.  But there are things that just don’t make sense right now- although maybe they will on Monday, who knows?  The feeling that decisions were made without consulting us first, among other things.  I’m sure there must be a good reason for all of this.  And so I am trying hard to let it all go.  At least until Monday, when we will know for sure what is going on.  And so, once again, I leave you, and ourselves, hanging on the edge of a cliff as I repeat myself in saying, by Tuesday we will surely have the answers to our questions and know what we will be doing.

Sunday, November 13, 2011

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

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

The first days at home were tough because Ale was still having discomfort and weakness in his left leg.  But in the last two days or so it seems to be subsiding.  We took the kids to the science museum yesterday to see a dinosaur exhibit and Alejandro ran around like a maniac for the whole hour and a half we were there.  He only asked to be picked up to see the exhibits he couldn’t reach on his own.  And once again he’s back to being the last one to fall asleep at night.  I know I’ve said this before, but I am so amazed at his ability to bounce back.  He is the strongest, bravest and stubbornest child I know.  Even with his leg and incision bothering him, shortly after returning from the hospital he insisted upon riding his motorcycle and running on our way to do errands.  I physically had to stop him at one point when it looked like he was really uncomfortable to tell him how strong and brave he was, but that is was ok if he was hurting to take a break and rest.  He looked up at me and said, “I know” and then continued on his way.  I ended up having to tell him I was tired and needed to sit and have a coffee, if he didn’t mind, and that he could have something to drink as well.  To that he agreed.  So we sat for about 15 minutes in a terrace before going on to the next errand.  He just blows me away sometimes.  He is only four.
 
We are also anxious, as always, to find out the results of the scans.  This is the longest Alejandro has gone without treatment since relapse and that really scares me.  The chemo wasn’t shrinking the tumor, but it does seem to have prevented it from spreading any further, so we are hoping and praying that nothing new shows up.  On Tuesday Ale will be starting Accutane, so if the surgery has left him with no visible disease, hopefully this will keep another relapse at bay until we start the antibody therapy.  And no, we still have no news from CatSalut.  I have no idea if this is good or bad.  But we do intend to find out what’s going on on Tuesday.  The date is drawing near and the hospital in Germany has to be paid upfront before treatment begins.  Thanks to all the donations, we are close to covering the cost of treatment so we actually feel like we are in a position to put some pressure on them to rule one way or another and not keep us hanging.  We have now passed the 10-12 work-days they said was needed to approve or deny funding.  I would like to think someone would be able to tell us something at this point.

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

Wednesday, November 9, 2011

Hello, all.
I just wanted to touch base quickly.  When things get back on track I'll write more about all that's been happening.  I've been meaning to write for days and just haven't been able to find the time.  We're home from the hospital after only a week that somehow seemed like a month.  Ale is recovering amazingly well for having undergone a third surgery to the same area.  Although he has discomfort in his left leg and the scar that runs from above his belly-button to his pubic bone is still healing, today he actually ran a little bit on our way to the supermarket.  This time he was in surgery for six hours.  They think they were able to completely remove the tumor- we should know by next week.   We left the hospital yesterday after
having a last minute MRI (there was a cancellation and they called up to the onc ward and our oncologist sent us running down) so between that and the urine markers they tested for between Monday and Tuesday, that's two post-op tests down and only one more to go.  Another last minute cancellation has allowed us to be scheduled for the MIBG scan first thing tomorrow morning.  This morning was spent back at the hospital getting pre-scan iodine drops and the injection of contrast.  To say the least, our heads are spinning.  We should have all test results, including pathology on the tumor, by next Tuesday at our next appointment, when we will see not only the oncologist, but both surgeons who operated on Ale as well.   
Whew!  It always takes a few days to get back into the swing of things at home and since we're still running back and forth to the hospital, it's taking a little bit longer.  So, I promise, as soon as I can, I'll get everything down in writing.  And, as always, thanks for listenting.



Thursday, October 27, 2011

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 anesthesiologistSince 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...

Sunday, October 23, 2011

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 MRII 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 usOn 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.

Friday, October 14, 2011

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.

Wednesday, October 12, 2011

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 €80,000An 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 mistakeI 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

Tuesday, October 11, 2011

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 heartsHe 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.

Saturday, October 8, 2011

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.

Thursday, October 6, 2011

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.

Saturday, October 1, 2011

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...