A Good Day

Whew!  I finally have a moment to sit down and write (although I did promise I would make chocolate chip cookies this afternoon!).  Dani took Ale to get his brother at school and I have the house to myself for a moment.  So many, many things to do, but I just need a breather.  For a moment. 

Alejandro has been amazing today.  Full of energy.  The 2 days off between the first and second half of this round of chemo and the fact that we actually got the kids on a more "school-like" schedule really show.  Today through Tuesday will be Irinotecan alone and Ale tends to tolerate it better than the combo Irinotecan/Temozolamide.  And by tolerate I mean that he has even more energy.  His Nintendo DS didn´t even come out today.  We played dominoes, go-fish, Uno and another game while he received the chemo.  And his appetite is great too.  At luch, after getting home from the hospital (and the park!!! I really don't know how he does it!), he had a small lamb chop and 4 pork cutlets!  His body seems to crave protein these days.  I'm not all that comfortable with so much meat (I'm sort of a vegetarian myself- although I do eat fish) but it's so hard with the chemo.  If his body wants meat, well, meat it is.

As for everything else...  We heard back from Greifswald.  They have their review sessions on Mondays so they will be contacting us by Tuesday regarding their decision.  I have yet to send out the tumor sample.  Will do so on Monday.  I had to call CHOP a few times for help on the paperwork.  I think this is the first time the genetics department has had to deal with an individual.  Thankfully, they are all so kind and so willing to help.  It makes the process much less stressful. 

Although at times it really catches up to me- do I spend time with my children, or make phone calls, or send out reports and e-mails, or eat, or sleep, or cook, or wash dishes and clothes, or go to the hospital, or take Carlos to school, or pick him up (thankfully, Dani does this because it tends to upset me going there), or track down doctors, or juggle possible treatment options, or make chocolate chip cookies??!!  If I stop to think about it it's too much.  So, I plug along and hang onto days like today that, hospital and chemo apart, just seem normal.  With two young boys who love to horse around and play outside, seemingly oblivios to everything else arround them.

Monday, September 19

Well,  we're at day 4 of this round of chemo.  Yesterday, on the way home in the car, Alejandro informed us that he liked this medicine because it doesn't make his tummy feel yucky.  He really has been tolerating this round really well.  Tomorrow is the last day of the first half and then we'll have 2 days off to relax before the last 5 days of the round.  Very draining going back and forth like this every day, but at least we get to sleep at home.  In addition, this week I got the ball rolling and sent out the cds and reports of the MRI and MIBG to Dr. Mosse at CHOP and Drs. Lode and Einsiedel in Griefswald, Germany... more waiting...

We're hoping to hear soon from the Drs. in Germany.  Our oncologist has already forwarded her medical report as to Alejandro's response (or lack of) to date.  We are hoping and praying that they consider this "perhapse" 20% reduction in tumor uptake as enough of a response to warrant antibody therapy.  We should know by the end of the week.

I also hope to get the sample for ALK testing sent out to CHOP by tomorrow afternoon at the latest. This isn't as simple as the cds and reports.  This is actually a sample of the relapse tumor.  The problem is that while everything we do here in Spain in regard to Alejandro's medical treatment is covered under Spanish health care, this test at CHOP is not covered.  Not even sending the tumor sample.  And since the hospital doesn't cover it, they can't send it and let me reimburse them.  No.  They have given me the tumor sample- which is sitting on the desk in the study- to send out personally.  This of course means that I have to fill out all the forms including the one for Spanish and American customs.  That should be interesting.  I can imagine someone on this end or over there wondering what on earth I was doing with a tumor sample!  Once they receive the sample at CHOP, it should be about 6 weeks before we get the results... more waiting...

And the kids are doing great.  Seemingly oblivious to all of this crazyness that is going on around them.  I mean, when I say "great" I am talking about Carlos being a tipical 8-year-old going on 14 (no one can tell him what to do- he knows it all!  And that mouth!  Where did that come from?!) and Ale who will not cede center stage for even a couple of minutes.  Alejandro goes to very great lengths to maintain the spotlight and has even learned a few jokes that he will gladly repeat over and over and over if nothing else has worked.  I swear.  There are days I would give anything to be the cool Aunt and not the grouchy mother.  They really are funny, but there are moments when we have to put on our "serious" masks and be parents, even when we are fighting against the desire to just sit down and laugh.

So, all in all, this week seems to be going well (even if it is still just Monday).

Waiting once again...

Well, yesterday we got the MIBG results and it "appears"- their words, not ours- that there is a slight reduction in MIBG uptake.  About 20%.  In layman terms, that means that there are labout 20% less active cancer cells in the tumor.  This is GOOD!  Alejandro still has the same lesion as far as size goes, but it hasn't spread and it appears to be less active.  

So, where does that leave us?  Waiting once again.  The results and reports are being sent off to the Drs. in Greifswald, Germany for review and we hope to hear from them in the next few days.  One of the requisites for antibody treatment is achieving at least a partial response to initial relapse treatment.  We aren't sure if they will consider this enough of a partial response to begin antibody therapy, hence the wait.  

We are also waiting to see what they say at CHOP (children's hospital of philadelphia).  Thanks to the contributions we have received to date, we can now have a genetic test done that the Spanish health care system will not cover.  We will be looking to see if Alejandro could be a candidate to receive an ALK inhibitor they have developed at CHOP.  Not all of those affected by neuroblastoma have this gene expression, but those that do may benefit from this inhibitor.  Also, if Ale doesn't qualify for antibody therapy at this point, we hope that the Drs. at CHOP will help in the planning of our next treatment.  After our brief visit there in July, we are keeping them up to date with Alejandro's progress so there is still a possibility we may end up there sometime in the future, especially if Germany doesn't work out.

And Alejandro?  He's doing great.  Today we started another round (number three) of Irinotecan/Temozolamide which means 10 days of chemo in the day hospital (5 days on, 2 day break and 5 more days).  Exhausting.  But the thing about NB relapse is that the cancer can grow and spread so quickly that we can't discontinue current treatment while waiting for word on what we will do in the future- and except for the fact that he is a little bit more tired than usual you would never know he's doing chemo.  He so amazes me.  The things that little body has gone through and yet he plays and runs us ragged just like any other 4-year-old, or maybe even more!

 So, in closing, and excuse me if I'm rambling, these last few days have really taken their toll. We find ourselves waiting once again.  But at least we know that for the time being the tumor seems to be under control. And for that I am grateful.

Para nuestros amigos castellano y catalán parlantes...

Hola. 
Gracias por estar con nosotros durante estos tiempos difíciles y darnos vuestro apoyo.  Sabemos que a muchos os cuesta el inglés y siempre, desde el comienzo, ha sido nuestra intención incluir en el blog links para visionarlo tanto en castellano como en catalán.  Solo deciros que estamos en ello y esperamos que empiece a andar como muy tarde a finales de la semana que viene.


De nuevo, gracias por estar con nosotros,
Un abrazo fuerte,
Robin y Dani

Quick update

Just a quick update.   Today, as you can see, we went in for the lugol drops-iodine- and injection of the radioactive isotope for the MIBG scans tomorrow.  Alejandro knows the hospital, nurses, doctors, techs, etc. so well that he feels right at home.  While Dani went to get juice to take the drops- cutbacks are affecting everything at this point- they used to provide the juice for the drops- Alejandro decided to turn the chair into his own personal playground (see video).  He took the drops without a hitch, the taste doesn't seem to fase him at all, and even was fairly cooperative while they looked for the vein in his hand to inject the isotope.  

On one hand this is good, but on the other, if I stop to think about it it makes me kind of sad that he has gone through this so many times that it's almost second nature by now.  

On another note, the MRI results are in.  No change.  At all.  As far as the imaging goes, the lesion measures exactly the same as it did in the last 2 MRIs.  So tomorrow is a really big deal.  We are hoping and praying that there will be no more uptake which would at least mean that the lesion is no longer active.  This would be considered a partial response and would allow us to go to Germany for antibody therapy.  Other things we need to be prepared for are no response and continued uptake but no disease progression or even bony disease progression.  All this we will know on Thursday and at that point we will start making decissions and plans.   Please just let me get through the next two days without totally loosing it.

Waiting

Waiting....
Waiting....
Waiting... 
More waiting...

The MRI (resonancia para los que siguen en español) was on Friday.  It hadn't been interpreted yet when we saw the oncologist and he wouldn't look at the images without the report.  Understandable from a common sence point of view.
But I'm all out of common sence.  I want to know now if there has been any response to this last round of chemo.  The MIBG in on Wednesday and we'll have all results by Thursday.  Dr. Gallego, I'm sure, will call us if there is anything to report.  So now every time the phone rings my heart skips a beat.  At the end of the day I'm frustrated because we still have no news.

These tests are so important.  Decissions will have to be made based on the results.  Decisions I'll write about when we know finally what we're up against and what we have to do.  So far Ale hasn't responded to the chemo, but hasn't progressed either.  I'm trying not to think to much about it becuase the kids can definately sense something is up.  

We try so hard no to let these feelings get through, but Carlos and Alejandro pick up on them immediately.  They both have had a lot of crazy energy the past few days.  Sure, school is starting.  Carlos knows he's going and his brother isn't and this is a big issue.  And Ale knows that his brother is going and that he's staying at home- also a big issue.  In addition we're trying to hold it all together while being worried to death about the test results.  So yeah, the kids are a bit out of control these days.

And it's amazing, because looking at Ale, he doesn't seem sick at all.  But it's there.  There inside of him like some perverse bomb ready to go off at any moment.  So please, please, please let this round of chemo have worked or at least have kept him stable.  And in a few days we'll be able to start another treatment.... whatever that may be....

Something that's been on my mind...

We classify our NB kids as Warriors or Angels.  Why should my son be either?  Why can’t he just be a kid.  What is this beast that comes to rob our children and their families of their innocence, of their future?  What parent should ever have to hold their child and not imagine a future for him?  Sure, we “live in the day”, take things “one day at a time”.  Give thanks for the here and now.  Today was a good day- Alejandro ate, played, had fun, fought with his brother, told us he loved us.  Yesterday he was feeling crappy from all the chemo.   He was in a nasty mood, wasn’t hungry for anything, lay around on the sofa until he played with his brother in the afternoon.  Carlos seems to be the cure for everything.  Yesterday was a good day too.  It was a day spent with Alejandro.  With both boys together.  They say this is how life should be lived. One day at a time.  Appreciating the small gifts life gives us.  But we weren’t given a choice.  This came crashing down on us one day in October two years ago with the words “your son has stage IV Neuroblastoma”.  The day our world changed forever.  This was imposed on us.  We never chose to live this way.  There is something intrinsic in thinking in terms of the future when you hold your baby in your arms for the first time.  People say they admire us for how we have adapted to our “situation”.  How “strong” we are.  We are none of these things.  We do what we must.  Nothing more.  I did not ask for this.  My husband and children did not ask for this.   I am not strong.  I do what I must to move from one day to the next, to hold my family together, to give my children hope and strength while all the while I feel as if someone has ripped the rug of all I have ever known and believed out from under me and I have yet to stop the free-fall and regain my balance.  No, I am not strong.  Or brave.  I am just a mother.

Hooray for poop!

Tuesday, August 30^th

Extract from a post of mine on a NB listserve

There is such a dichotomy of what I show/express to the "outside world", and what is going on inside my head.  I want so desperately to believe that Alejandro will beat this.  I tell myself over and over and over every day, every night, every waking moment that we will beat this, we will, but, especially since relapse in February, I find this harder and harder.  We have to stay positive.  For us and especially for our children.  But sometimes it takes such a toll.

Alejandro had been complaining for 2 days of lower belly pain but he wouldn't let me get near his belly to feel it.  Since we were on the last two days of Irino/Temo, I figured today we would discuss it with the oncologist- maybe it was related to treatment.  As it was, I decided to poke around Ale's tummy once he was asleep last night to try to put my mind at rest.  What I felt was a hard lump in his lower abdomen with a very distinguishable shape.  This was around 4 am.  Obviously, I did not go back to sleep.  As soon as we got to the hospital today for treatment (of course smiling all the way- everything is cool, everything is great) I grabbed the oncologist on his way through the day hospital and told him out of earshot of the kids what was going on.  He immediately came over and spent quite some time examining Alejandro's abdomen.  He was of course very thorough.  At this point I am imagining all the worst-case scenarios all the while with my everything is fine smile plastered on my face.  Diagnosis:  fecaloma- in other words -Poop.  Alejandro gets constipated from Irinotecan instead of getting diarrhea.  But this had never even crossed my mind.  Needless to say, I had to leave the room as I started crying out of control.  I mean, I really lost it.  And it took me quite a while to get myself under control again.  It was just poop and I couldn't stop crying. 

Just another day in the life of an NB parent.

Hello and welcome to Friends for Ale

Friends for Ale has been created to keep our friends and family updated on Alejandro's fight against Neuroblastoma, a rare form of childhood cancer with a cure rate of about 30%, and for fundraising/donations for Ale's upcoming medical expenses.

http://www.friendsforale.org