let bygones be bygones

This past Thursday was the day. The most dreaded day of this month. It was time for the monthly EUA again.

I wonder if I'll everbe be able to go in that room and wait for the doctor to come bring us the news of whether our miracle still is free from cancer, without being on the verge of a nervous breakdown.

We were in a privat room this time, that is one of the advantages with this hospital. Another is that they set us up at a super nice hotel, instead of in a dreary hospital room. It does make the food bill a bit more difficult to fit, but I'm hoping that we'll be able to find a couple of cheap places to eat as we get to know our way around the area. There seem to be plenty of restaurants to pick from.

I think I'm as happy about the hotel as I am about the privat waiting room in the hospital. When we were staying at the children's oncology ward all parents had to be in the same waiting room, so those having their kiddos in the operating theater had to sit and watch the children who had an appointment with the anesthesiologist play on the floor.

Personally, I find it very difficult to be around little ones, when I've just had to leave my own little miracle under anesthetics in a room full of strangers.

I smile at their games just the same, but it's still a painful reminder of that my own baby is not there to play as well and, I always, always, wonder if I'll see him again.

I know that there's no reason for that illogical, irrational fear, but it doesn't matter that i know that it's a very light anesthesia and, that the likelihood of comlications is very low, the aching knot of fear in the pit of my stomach is still there, every time.

This time B came with to the operation room, that was a first as well. Ordinarily they only allow one parent to come with, so since peeper is very much mommy's little baby, I'm always the one to go. They made an exception this time however, just because it was our first time at this hospital.

It was a very difficult experience for both of us. They use the hateful mask at this place. We were told that this is standard procedure. I'm relieved that they won't meddle with the portacath, the less they touch that thing, the less the risk of bacteria in my baby's blood. But i hate that mask! Hate it with the same passion that I hated it when i was little and, they had to chase me down the hospital corridors as I ran for my life.

Little Peeper kept coughing and coughing and, I had to hold his arms to keep him from pulling the mask off. It was awful! It sounded like he was suffocating and, the anesthesiologist just kept pressing the mask down over his little mouth and nose.

All I wanted to do was to pull that monstrosity off of his little face myself, knock the anesthesiologist out in the process, gather my baby up in my arms and flee; flee for our lives!

Unfortunately, B was just as upset as I was and, could barely choke back the tears, so there'll be no strength to draw upon coming my way from that direction. It isn't an accusation you understand, just a fact. Ultimately it won't matter, cause I assume that I'll be the one going with our little miracle every month for a long time still and, B will be there waiting to hold me when I come back out. That may actually be a better alternative for all of us.

All we have to do now to make these appointments run smoother in the future is to get rid of that obnoxious counseler they provide at this place.

According to the hospital's routine, a counseler is available every time we're up to get the virdict about our baby's health and eyesight. That is a good thing and, I'm sure that there are parents who benefit immensely from this. More over, I'm sure it could be great for us as well, had it not been that this person seem to know every single trick in the book to rub us the wrong way.

Yep, both of us, neither one of us can stand her and, that is very unfortunate.

It's been that way since the first time we met her and, she told us that it was obvious that we weren't especially devastated after we had just gotten confirmation from the Retinoblastoma expert that eye cancer was indeed what our baby was suffering from.

"Not especially devastated?!" Are you kidding me?!

How could we be anything but, when we've just heard the doctor say that she was sorry, but our baby had at least 2 tumors, one in each eye.

Excuse me, but just because people prefer to mourn they're broken dreams privatly, instead of breaking down and sobbing hysterically in front of strangers, does not mean that they're not devastated!

We already knew that that examination would confirm the diagnosis. The first doctor had told me so, even though she also said that she was not the expert and was therefore not allowed to say, but it was clearly tumors that she had seen and, she couldn't give us hope about it being something else when there wasn't any.

We had both been crying day and night for a week before we got this second confirmation and, tried to focus on the good parts of what the eye doctor was telling us, to kee from falling apart at the seams.

The 2 tumors, which actually turned out to be 3, where 2 of them had grown together so that they looked like one, were far away from the optic nerve, which was a good sign, as it made it less likely that they had spread to the brain. They were also not very likely to damage his eyesight very much, cause even though they were located in Macula of retina, they were not in the sentre, which meant that he would get to keep mowt of his central, high resolution vision.

Still, there we were, right after we had received the information that our beloved little innocent baby had cancer, waiting to speak to the oncologists about starting chemotherapy treatment as soon as possible and, not knowing whether the cancer had spread to the brain or bone marrow, but the counseler didn't think we were especially devastated? I'm sorry, but that makes me wonder where she got her education at.

At the children's hospital we had the option to grimace, growl, shake our heads, cry, curse and let bygones be bygones, as she would only show up to our next meeting if we called and asked her to do so. But now that we have been transfered to the eye hospital, she can apparently come barging in as she pleases.

This time, she started out by telling us that there were 2 more children suffering from the same cancer at the ward that day, so we should go to the play room immediately and meet their parents.

I don't mind connecting with others going through the same thing, but I do mind being ordered to do so. Giving orders does however seem to be something she enjoys more than anything. She tried to tell me when I should put my baby down in the crib, where Alex should go wait for us to come back from the examination, when he should leave, on and, on and, on...

She also, very kindly pointed out that it was obvious that B was the more nervous one out of the 2 of us.

I didn't know it was a competition.

B took the experience with the anesthesia very hard and, was trying not to break down, so did I, I'm just a better poker player and, this wasn't the first time for me. She doesn't know us, so what right does she have to make statements like that? Again, where did she get her education at?

More over, when B told her why he was upset, she did the right thing and, told him that the older children often hold the mask themselves when it's time to sleep for a bit, but then she destroyed the good impression by saying that we didn't have to go with him into the operation room if we didn't wan to.

Are you serious?! Am I suppose to leave my baby all alone under such terrifying circumstances because I'm scared? If the fear is hard for me to handle as an adult, then how overpowering must it be for him. What kind of a parent does that?! And what kind of a counseler gives that advice?!

She did however give me some useful information, which includes that they never give another round of chemo, even if they, God forbid, should find more tumors. They treat them with laser, cryotherapy and, radiation instead.

It makes me wonder why the doctor in the cancer ward wanted himm to keep the portacath however, so I'm not entirely sure that she knows what she's talking about. Either way, I'm sure she wouldn't have said it if it hadn't been her experience that they never use chemo again and, considering that she also said that she has worked in the eye hospital for 8 years, it is good news no matter how we look at it. It gives me more hope that we'll never have to go back to the cancer ward again and, there are days when I need to count off every reason there is for hope, to be able to function and breathe.

I'm glad that I swallowed my hot words and went to meet the other parents as well, as I know from my experience with the baby loss community, that only someone else who has walked the walk can truly understand me. Also, every child who is alive and well and, doesn't have a relapse adds to my list of good reasons for hope.

We hung out in the play room for a little while and exchanged a little bit of experience, while Peeper got thurrowly hugged and kissed by the sweetest 2-year-old you can imagine. She obviously knew no better toys than living dolls. It was super cute.

The whole thing wasn't much fun for B however, as the conversation took it's course in Swedish, but Peeper was happy as could be, with all the attention he received.

The same thing actually happened 2 days earlier, when we finally could go back to see our regular nurse, who's been responsable for checking his weight and height and for giving him his immunization shots. He got litterally attacked by a little girl in the waiting room. Children are so wonderfully spontanious. It's a shame most of us lose that ability as we grow older.

We were actually at the doctor's office because it was time for Peeper's 12-month-immunization, but we're gonna have to wait until after the summer at least, as a minimum of 3 months have to pass after the last chemo treatment before it's safe to give him the vaccines. But the nurse was able to measure and weigh him at least. He was 76 cm tall and, is now a 10,2 kg bouncing baby. Not so easy to carry around anymore.

It always feels better to know his exact weight when he's going in for the EUA, so I'm glad we could get that done before we left for Stockholm.

It was nice to see our nurse again too. Nice to be back in the regular place, for his regular check-ups and, not have to get that taken care of at the day time ward at the hospital anymore. It reenforces that our little miracle is well now and, I am thankful for every opportunity to enjoy the reenforcement of that mesage.

He is well...

Alive and well...