Clemency's been granted, sort of

And just like that, we are done with another trip to the eye hospital. Time has really gone by so fast this time. I guess it always seems like that in retrospect, but with my family coming to visit and, our little midsummer excursion, the month has just wizzed by.

We had a pretty good time in Stockholm this time around. We went for a walk down town, but honestly, there was so many people everywhere that it was difficult to navigate the stroller. That little detail got on my nerves after just a short while, but it was fun while it lasted. We debated whether to try out a new restaurant or not, but in the end we settled for Burger King. Not the most exciting place to eat, and definitely not the healthiest either, but we had Indian food the day before, so I figured I had pushed my reluctant family into trying new stuff enough for one week.

Actually B is the reluctant one here. When we met he didn't eat vegetables, had never ordered anything remotely exotic, and was all in all not very open to try anything he hadn't had before. Especially not in a restaurant where he might have to pay for something he didn't like.

I am his polarity, in this as in so many other things. I'll try almost anything that smells good, and I would have missed out on so much if I didn't. I'm trying to teach my children to look at hings in a similar way, which would have been a bit complicated if B didn't want to participate.

But we've come a long way in these four years, and this family actually eats almost anything I put in front of them with pleasure. That being said, B still like to play it safe when we're eating out and, we needed to find something fairly cheap anyway. So Burger King it was.

After that, Alex and B spent about 2 hours in the hotel pool and sauna. I had a somewhat less relaxing 2 hours however, as Peeper's stomach suddenly decided to act up, which meant that he threw up on the hotel sheets and, blew up his diaper twice in that time.

At that point I was convinced that we would have to set up a new appointment for him at the hospital, as it would be dangerous not to let him have anything to drink under such circumstances, especially in this heat. According to their rules, he's not allowed to have neither food nor drink after midnight, but they're just too lazy to specify what he can and cannot have. I know that that rule only applies to solid food really, so I stick to the rules from the other hospital, where it was said that he could have water up until 6 hours prier to the anesthesia and, that I could breastfeed up until 4 hours before he was scheduled to go in.

After that little incident he was perfectly fine however, so it must have been enough to get rid of what ever was troubling his stomach, and he hasn't had anymore problems since.

Next time it'll be my turn to chill out in the sauna; be sure of that. There's a gym too, and I'm already looking forward to a good workout. Everything is just so much more relaxed now that we're staying in a hotel instead of in the cancer ward for children. It's only two months behind us but, sometimes it almost seems like it all happened in a different life.

I wanted to take our little guy to the zoo today but, on second thought I decided that with the eye drops they give him to dilate his pupils, he probably wouldn't be able to see very much of the animals anyway.

One would think that I'd be able to remember that after all these years with regular cataract examinations of Alex's eyes, in addition to the 6 months that have gone by since little Peeper was diagnosed with the retinoblastoma, but it just didn't occur to me until the nurse gave him the eye drops this morning.

I don't know if it's age, stress, or the fact that vision is a pretty abstract concept to me to say the least, beings that I'm blind myself. Perhaps it's a combination of all three of those things. Either way we had to change our plans and, we'll make sure to take him there the day before the next EUA instead.

The next one is planned six weeks from now. They couldn't offer us one at the regular 4-weeks-interval, due to vacation time, but the doctor said that 6 weeks would be just fine, although they could schedule an examination in 3 weeks instead if we would prefer that. We decided to go with his recommendation of 6 weeks, but I'm already changing my mind.

It was a decision made during those first moments of relief, right after our monthly roller coaster had come to a standstill, and we were just grateful to get to live another month, with a cancer-free baby.

During those moments, I always believe in medicine. The rest of the time I'm not so sure...

But I'm kidding of course, I believe in it wholeheartedly. It's just that medicine and truth telling doesn't always mix, and, unfortunately, nor does medicine and safe routines, as we've had reason to point out so many times during little peeper's cancer journey. There's been so many things, ranging from that the nurses don't know that it could have fatal consiquences to use a rectal thermometer on a patient who's receiving chemotherapy. To that the doctors don't refer us when they should. To that nobody has told us that the Portacath has to be flushed out with a certain interval of time. Presumably 3 months. At least that is what a nurse I trust at the day time ward told me when I asked her last week.

The oncologist who released us from the cancer ward however, said nothing of this, and when I asked at the eye hospital, they just let me know that "that's something for the pediatric oncologists."

The same was by the way said about the problems with his MRI appointment. Not at first. I emailed the doctor who diagnosed the retinoblastoma and, she promised to help me as soon as she got back from France, but As we had an appointment at the eye hospital before that, I decided to ask there instead.

That was something I came to regret right away, as the doctor we met with this time even tried to dismiss it by saying that that was a new routine and, they didn't even do MRIs as of 2 or 3 years ago. As if that would somehow make me realize that my concern was uncalled for...

It was a new doctor who we hadn't met before though, so perhaps it was more a matter of that he just didn't want more things than necessary on his plate, as he then made a complete turnaround and said that as long as we could get an appointment in September, there was nothing to worry about. He couldn't warrant an emergency referral, but if the x-ray department didn't get it set up as soon as the vacation time was over, he'd get them to hurry things along.

It's just getting to be a bit too much, as we also had to wait way too long for our little ones first EUA. Just like we now have to wait way too long for his MRI. And we all know what the result was last time...

Luckily for us, there's a nice nurse at the day time ward who cares, and so we've got an appointment scheduled for the 3 September. But that's still two months too late. And two months is a long time when one's dealing with potential brain tumors.

No matter how I try not to let my thoughts wander off down that road of potential terror, where my little miracles hands could be as cold as those of his little brother, forever sleeping among the trees, there are still times when I constantly have to block that thought process.

And fact still remains, two months can make all the difference in the world.

It would have made all the difference in the world...

But I don't mean to be so down when we've just been granted clemency for another 6 weeks. It's been a long day and, our little guy has been super cranky after the examination, so the long train ride home wasn't exactly a walk in the park. On the other hand he was such a little angel all the way up there yesterday, kissing and hugging on us, playing, and laughing for no reason at all, or at least no reason apparent to us. It's been a hard day for him and, he has a right to balance things out just a little. Tomorrow will be a better day, and if the weather forecast is to be believed, we've got a couple of lovely summer days coming up. We plan to enjoy them.