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


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.