Earth Hour and other happenings

Little Peeper's blood work is pretty much following the same trend as last time I posted, that's to say everything is still coming back up, but his neutrophils are still alarmingly low, so we're keeping to ourselves as much as possible. The only time we se other people is when we go to his appointments orr to the counseling, but we're hoping that his values will come back up during next week, so that we'll maybe get the chance to see at least my sister for easter, as we have an extra week at home before the next chemo treatment.

Alex has the next week off from school and, in a moment of weakness I promised him that he would get to decide the menu for the whole week. The only condition was that he would help me cook the meals he picked out and, that he included vegetables. It'll be good practice for him...

We started off nicely by making our own pizza. The result wasn't too bad and, it was nice to get the chance to do something with him for a change, as little Peeper of course takes up most of my time...

We went for a long walk today too. I've been keeping track of distance, average pace etc, with Run Keeper and, we have walked over 30 km since Sunday. It's a good trend and, I hope tomorrow will be warm enough to keep it up.

Today was sunny enough, but the wind was pretty bad and, awfully cold. But at least we didn't get woke up by a blisard like my mom and my brothers. Either way, March is definitely going out like a lion.

Earth Hour ended a little over an hour ago and, considering what a good time it was to play word-games with Alex and B and, to sing songs together at candle light, we should turn all electric stuff off more ofthen. Little Peeper especially enjoyed the last part and, he loved to look at the candles.

Surprisingly enough, It seemed like a lot of people in our neighbourhood showed mother earth some respect and turned their lights off during Earth Hour. I didn't expect that, this isn't the type of neighbourhood where people believe that they can make a difference. They prefer to sit at home and complain about the crappy government running this country, instead of casting their votes on their oponents to make sure that the bastards lose their seats in the parlament.

You'd think that they'd join the ones who argue that turning everything off for an hour isn't going to make any difference and, how we will use up more energy by starting everything back up again, but for once I was glad to find that I was wrong...

By the way, of course it doesn't make a lot of difference from the energy perspective, but the whine-bags are missing the point...

Earth hour is about raising awareness about how much energy we're using up and, about the environmental situation, which is getting more desperate every day and, jus the fact that the world's largest volontary movement to save the environment has reached even the semi-ghetto where we live, is proof that it's working.

I wish there was a way to raise awareness about baby loss and childhood cancer that was just as effective.

10 months!

10 months! And we are at home!

• waking up in our own bed!





• Getting up to change little Peeper on our "own" changing table and, Putting on one of our "own" clean diapers.





• Picking out something nice for little Peeper and, dressing him in clothes of his "own".





• Having breakfast Together, all of us, in our "own" kitchen!





• Playing with little Peeper's "own" toys on his "own" little playmat!





• Playing music on our "own" CD and dancing around with him just because we're happy to be alive and, well enough to be out of the hospital.





• Perhaps going for a walk here in a little while, if the weather allows it...

We celebrated 8 months in the hospital and, 9 months as well, but today there's:

• No Hospital room,





• no hospital bed,





• no hospital clothes,





• No canula to worry about when we're playing, bathing, or putting clothes on





• no hospital breakfast with only Peeper and me,





• and, more importantly, there is no super sick little baby!

I know his blood work is still atrocious and, he threw up again a couple of times yesterday, but I noticed last night that His 8th tooth had broken through, so I'm hoping that can explain some of his stomach trouble. He seems to be feeling alright this morning at least.

And That is all it takes to make me happy.

A double up

It feels like all we've been doing this past week is to go back and forth between our home and the hospital, but at least peepers trombosites are coming back up so the emediat need for a blood transfusion is if not gone, at least postponed.

His white blood cell count has gone up a little bit as well, to 4,0, but his neutrophils are still at 0,2, which means that he still has close to no protection against infections.

His red blood cell count is stable between 85 and 90, 85 at the low and 89 at the high, so he's staying clear of the 80-mark.

We've actually had a good experience with the transportation for the first time. The hospital has been raising hell over there because of how the drivers have been acting, so now they're actually sending someone who knows what's going on. It may of course also be because we haven't been using the transportation service much, that remains to be seen.

The weather has been quite warm, so We've been getting a couple of nice walks in. I'd take that over the cab-ride every day. There hasn't been that many chances to get excersise while dealing with little Peeper's cancer treatments, which has been difficult for me, since working out regularly has been an important part of my life for a long time.

Losing the ability to work out is of course an insignificant thing if I look at it from the perspective of what little peeper has to go through, but after being a player on the national showdown team for several years, working out was almost part of my identity.

It's been almost 2 years now since I was able to play, since first the bed rest wile expecting our little miracle and, then just the daily life of being a parent of a wonderful little rainbow baby got in the way, but I was just preparing to start practising for the EC this summer when our lives were put on hold because of the cancer.

It'll have to wait of course and, all I really care about is for Peeper to get well, but I still value every opportunity to go for a nice, long walk. If this spring weather is here to stay, there should be several chances coming up, even if it's just taking our little one for walks back and forth to the hospital.

Nice weather always helps and, though it has been grey ou there for the most part, at least the blistering cold is gone for now and, there's been a few splashes of sunshine here and there, so I'm hopeful. We need every opportunity to raise our d-vitamin levels in this part of the world anyway, but it's even more important now when there's been so much to pull us down. d-vitamin helps to elevate one's mood and, fight depression and, God knows that every little contribution when it comes to that is much needed and appreciated.

More over, all that fresh air is good for all of us and, going back and forth is definitely preferable to being stuck in a room at the infection ward.

Peeper will be 10 months here in just a few days and, I hope we can stay out of the hospital this time. Perhaps we'll have a bit of an early birthday celebration if we do. When one is all-in with cancer, there's reason to celebrate the little things in life...such as a double up of trombosites, or turning 10 months in one's home, when one turned 8...And 9...In the hospital.

Another transportation service mess

All Peeper's blood work came back attrociously low today and, we know from experience that he hasn't hit rock bottom yet, so it's a bit worrisome. After some deliberation they decided to wait until tomorrow before giving him a blood transfusion. Mostly, I think, because they had to get blood from another hospital and, it wasn't enough of an emergancy to worent an emediat order.

Hemoglobine at 85, trombosytes at 29, white blood cell count at 2,7 and, Neutrophils at 0,2.

There planning on giving him a transfusion of trombosites tomorrow, but he may need a regular blood transfusion instead, it depends on what his blood work shows tomorrow.

All I can do is hope that cooking nutritious food for him, high in c-vitamin and iron will somewhat help his red blood cell count. At least that makes me feel like I'm doing something to help him.

We do skin on skin time as well, that is always good for the immune system. He's getting to be too big for sleepin on me now though, but he still likes it and, mommy does too, so I just let him fall asleep like that and then lay him down beside me when he seems to be deeply asleep.

Getting him to sleep has become a problem lately. I guess it always has been, but he doesn't just wake up because he's hungry anymore. He's also having a lot of nightmares and he wakes up screaming several times every night.

Separation anxiety perhaps. He's at the right age for that, but at the same time It's not like the last couple of months haven't given him reason to dream bad dreams.

With his blood work being as low as it is, we of course also had another round with the transportation service.

Some day in the future I'll come back and read this and, wonder if it's really true.

The guy today showed up on time, I'll give him that, but it was down hill from there.

Knowing how they have behaved before, the nurse made sure that the driver would come pick us up at the ward this time, so that Peeper wouldn't have to wait around in the reception area in case they were late again.

She also made sure to ask him about the car seat.

He had one, and yes, he knew how to fasten it in the car. But no, he did not know how to adjust the belt in the car seat itself, to make sure that a baby was safely buckled in.

Upon learning this, she asked if he wanted her to come with to help him out, but he just snapped that he'd solve the situation with the help of the parents.

She then told him that it was their car seat, and since both parents are legally blind they could not be expected to figure out how a car seat that belongs to the transportation service works.

He then again snapped that he'd solve the situation and opened the door to the hall with the elevators.

As soon as the door had closed behind us, he tried to snatch the stroller from me. He didn't ask me if I wanted help or anything. He just tried to literally rip the handle out of my hands.

I held on to it and told him that i would manage without help thank you.

In spite of the indicator above the elevator door showing wich way the thing would go; up, or down...He had us get on the wrong elevator, and we went all the way up to the top floor before we finally could go back down to the main entrence.

Normally I wouldn't care about that. Everybody makes mistakes, but he was swearing under his breath the whole time and, more or less behaving as if it was our fault that he had been stupid enough not to look.

When we finally got out on the bottom floor, he again tried to snatch the stroller away from me. Stating that: "I was doing it wrong." This, I assume, because I pull the stroller instead of pushing it, since it's impossible for me to use my cane to ensure that there's nothing in the way otherwise.

I again held on to the stroller and told him that I could manage it, but he refused to let go and kept trying to forcibly get me to let go. Brandon stepped in as well and told him that I could take care of things myself, but he had to tell him several times before he finally released his grip and took his filthy hands off my stroller.

When we got to the car I didn't want to give little Peeper to him, so I put him in the car seat myself, and then stepped aside so that he could adjust the seat belt. It only took him a few seconds to fix it and, knowing that he had said that he didn't know how to do it, I was surprised, it usually takes them a while to figure out how it works. I asked him if he had been able to buckle him up safely and, he said "yes, no problem," so I got in the car and, while I was still putting my own seat belt on, he started driving.

As soon as I was done with that, I as usual put my hand on little peeper to make sure that everything was alright and, also to assure him that all was fine and, it only took me a second to realize that the driver had only just put peeper's arms trhough the straps that are suppose to go down over his sholders and buckled on his stomach together with a strap from between his legs. This, however was not done, cause the strap was, as I had noticed earlier, to short and had to be adjusted. I was later told that this is something that has to be done from the back of the car seat somehow, but I couldn't figure out how.

I of course told the driver to stop right away, but he just started arguing that "he had indeed buckled the baby in safely." I can only assume that he thought he'd be able to fool me because I'm blind, but when he realized that I wasn't gonna fall for that. He got out of the car and slammed the door. He came around to peepers side and, started trying to use force to fix the straps, so I took Peeper out of the car seat.

After about 30 seconds, the driver snapped that he couldn't figure out how to do it and, that there had to be something wrong with the "fucking thing". but I could just let Peeper sit in the car seat without a belt, or hold him on mhy lap on the way home.

I got out of the car and, told him to call his boss to see if they could send someone over to help him, or preferably send another cab to pick us up.

Brandon, who only had a vague idea of what was going on, since he doesn't speak enough swedish to pick up that whole conversation yet. Couldn't do much other than take the stroller out of the trunk when I asked him to.

We stood around for a while waiting for the driver to get a hold of someone from the transportation service and, he was fiddling with the car seat the whole time. When he finally got a hold of someone over there, he had apparently figured out how it worked, cause he just said something about that "the parents were a problem and, that they had thought that there was something wrong with the car seat, but he had it figured out now."

He then hung up and turned around and almost yelled:

"Are you going or not?"

I again explained that:
"We would only go if he had fixed the car seat."

He snapped that he had fixed it and, at least this time he was capable of telling the truth and, we got homme without further trouble.

I called the hospital as soon as I got home and, they'll report this incident as well. That's all we can do...

It'll be interesting to see how it goes tomorrow when we're going back for more blood work.

Just shut up!

I don't wanna hear about how your cough kept you awake all night... it's just a stupid cold and, you'll live!

I don't wanna hear about your aching back either... I'm sure it hurts to throw it out, but right now I don't care...Again, You'll live! You'll survive! You'll be fine!

Stomach flu... Well, poor you, but it could be worse!

Your baby's colicky?

Teething?

Just fussy for no apparent reason?

Aaawww poor you; I'm crying!

You know...My baby is battling cancer! So just shut the fuck up and, be grateful for what you've got would you!!!

Just a little update

It was time for some blood work again today and, as usual after the chemo, everything is going down, down, down. The doctor was a bit concerned and, we're gonna have to go back in for another check-up on Monday, to make sure that they catch it in time in case little Peeper needs another blood transfusion.

His Hemaglobin was 93 today, which means that it can drop another 13 units before the blood transfusion is absolutely necessary, but we know that it'll keep going down during the next week. It always keeps falling for about 10 to 14 days after the treatment, so I'm glad they'll be keeping a close eye on him.

More over, if the weather only decides to be as nice as it was today, we won't mind walking back and forth to the hospital. Today was the first bit of fresh air that we have gotten since we got home from the last treatment, so being able to walk around out there without a coat on was definitely a more than welcome change to the cold and rainy weather we've been having thus far. Not too mention how good it felt to get out of the house for a couple of hours.

It was a bit chilly on the way over there this morning, but it was 10 degrees C out there when we were walking back home and, I would imagine probably 15 or so in the sun, though it may of course have been a little more or a little less. either way it was wonderfully warm and, spring is finally, finally on it's way.

I'm looking forward to taking lon walks in the sunshine again. It'll be great for all of us. Little peepr is going to be old enough to go to the playground here pretty soon as well... Now if only he could get to feel well enough for more than a couple of days at a time we'll spend as much time as possible outdoors.

The first few days after this last treatment were a bit ruff on him with a lot of nausea even in spite of the medecin. He has been a little feberish too. Not enough to go to the hospital, but right on the edge. He has just now gotten better and, he seems to be back to normal now. It's a little bit hard to tell though, since he's super cranky because yet another one of his upper teeth broke through yesterday and, there's another one on the way. That may explain the fever though and, I'm glad that it was teething and not complications from the chemo that caused it.

He's got 7 teeth now. He's growing up so fast and, He will turn 1 years old here before we know it. I just hope we don't have to be in the hospital when he does.

There was a little boy turning 2 the same day that we left the childhood cancer ward this last time. We didn't see him, but there was a sign saying "happy second birthday" up on the door to his room. It made me cry and, I have thought of him and his parents ever since. Children shouldn't have to celebrate their birthdays in the pediatric oncology ward. We left a couple balloons for him outside the door to his room. It wasn't much, but it was all we had and, we had a train to catch. I hope he was strong enough to play with them.

The ward was full this time. I've never seen so many children over there at once and, way too many of them are just little babies. It's a very difficult place to be. So many had to stay over the weekend too. Normaly that doesn't bode well. I know we stayed that first time cause they were going to begin the chemo therapy treatment, so there was no point in going home as we would have lost almost 2 whole days to traveling anyway. It's just that there are other explanations for stayint the weekend as well and, when the little ones are staying in their rooms instead of being out in the playing area it's usually one that hurts too much to think about.

Why is life so unfair!? Why can't all children at least get a good start in life. It seems like they should have a right to it.

I guess ultimately I shouldn't worry about celebrating his birthday in the hospital. At least his prognosis is such that we will get to celebrate many more with him. Not all parents are that lucky.

I've been very down lately. It should be the other way around with the good news we received last time, but could, would and should, never seem to be a reliable source for how things actually turn out.

Life itself is hard to deal with and, I'm so worried about my older brother too. But everything is making me kind of sad right now.
Especially that little peeper is growing up too fast and, Alex is too; he'll be going away to collige before we know it. I wish there was a way to slow the time down some times. But on the other hand I'd like it to speed up so that we can get done with the chemo and, hopefully start living again. I feel like our lives have been on hold ever since the first suspicion of cancer was raised.

I should really try to take my own advice and find joy in all the little things such as that little peepre is getting to be so talkative now, responding with a million different little sounds every time we're saying something to him. But I feel as if I do for the most part even though it definitely doesn't sound that way right now. There are plenty of reasons for happiness even in the difficult times we're going through. As always it comes from the children, but there is more: such as the fact that we actually are in love with each other still after all that has been going down.
Or the joy that was plain for anyone to see throughout B's whole being that day little Peeper decided to call his dad "baba."

As for other words, He already says:
"Mamma" for me, and, "hey" and, "no" in swedish. No english words yet though other than "Hey," wich sounds the same in both languages. He doesn't have a word for Alex yet either, but his whole little body is full of joy every time he sees him. Especially this past week, since Alex is getting home a lot later than usual.

Everybody in Alex's class has been trying out how it would be to have a job this past week and, the music store where he's working closes at 6, so as he's walking home, he's not here until 7 or so. Normally he's home somewhere between 3:30 and 4 o'clock and, little squeeker is definitely noticing the difference.

I hope this weekend brings more lovely weather, so that we can spend some more time outdoors in the sunshine. I'm sure that'll be good for little Peeper's blood count as well. He's neutrophils were at 0.9 today, so at least that's not alarming yet, but if his history is taken into account we can be pretty sure that his headed towards neutropenia anyway and, what ever little help he can get to boost his energy levels is more than welcome right now.

2 down, 1 to go

Our little miracle has just completed his third chemo therapy treatment and,isn't feeling any too well... But part of that is also because 2 bottom teeth suddenly decided to break through over night and, I mean that litterally. I haden't even noticed any signs of that they were on their way this time, until he started chewing on my finger earlier and, there they were... So my big boy's now got 6 teeth...

believe it or not, but there haven't been any mishaps at all this time and, what's more, is that we have gotten wonderful news!

2 tumours down!

That's right! The 2 tumours in his right eye seem to have disappeared, died and, dissolved into nothingness. Ah maybe not quite, there's a couple of scars left, but they are at least inactive now...

The one in his left eye has shrunk considerebly, but it requiered a little bit of laser treatment this time as well.

The doctor could now also say for sure that the sentre of the macula of the retina, which is the part of the eye that is responsible for central, high resolution vision, doesn't seem to have been effected by the tumours at all. In other words, his vision is not severely damaged and, it seems, barely damaged at all.

Complications can of course stil occur, but things look very promising right now.

Little kangaroo-cub still has one treatment left to complete this cycle of chemo therapy, but hopefully, hopefully, he'll be done with that after next time.

It seems as if I spend every moment that he's awake hugging on him and, telling him that "he'll be alright now. He has done so well and, he'll be alright now..."

Almost doesn't count

Little peeper managed to stay out of the hospital for 17 days this time and, I almost thought that we would beat the Neutropenia this time even though his Neutrophils were low at his last check up.

But as we all know, almost doesn't count...

So here we are again and, little Peeper is sicker than ever. 40, degrees C in spite having recieved both parasetamol and another, more effective medecin. I have spunched him off with cool water and, we have to keep the window open now as a last resourt too help him cool off a little bit.

I hope he doesn't get Febrile seizure on top of everything. He's got enough to deal with as it is.

My poor little miracle. I'm so sorry you have to go through all this. I wish I had known that I could pass that gene on to you. I'm so terribly terribly sorry.

Here we go again

Little peeper's nutriphil count is at 0,3 again, which means that I'm more or less just waiting for the moment when we'll have to take him to the hospital for neutropenia again.

Thus far he's not doing to bad however.

He's got a bit of a cold and, he's had a pretty bad cough ever since he received the chemo treatment, but he doesn't have a fever and, he's stil active and, all in all a happy little baby.

It's been 14 days now since the treatment, so hopefully he's blood count will start to come back up in a couple of days. 10 to 14 days after the chemo is usually when the neutrophils are at their lowes point, so I'm hoping that 0,3 will turn out to be the turning point.

I'll be surprised if he can stay out of the hospital after today though...

It's really irritating to me that he was expected to be low this time, but they still wouldn't let us use the transportation service to bring him to his appointment. The weather was pretty bad, so we couldn't walk to the hospital, which meant that we again, had to take the bus with him...And people were sneezing and coughing everywhere...

Not that the transportation service has proved to be any help thus far, but it's the principal of it all.

They ordered a cab for us to go home from the hospital however and, it was almost as chaotic as last time, so on second thought it was probably a blessing in disguise that we didn't have to deal with them on the way over there as well.

The driver showed up 30 minutes late and, he didn't know how to put the car seat in correctly; am I the only one who can see a trend here?

. I'm grateful that I was putting peeper in there myself or, there might have been a disaster to deal with. I'm seriously beginning to think that all the people they're hiring over there have "idiot written" all over their CV.

This one didn't just bail on us though, I'll give him that, but we had to stand around outdores for another 30 minutes and wait for them to sen over somebody who could show him how it was suppose to be done and, it was almost storming out there.

I don't understannd why the idiot couldn't just let us wait in the car or show me how to get back in the hospital. He just told me that it wouldn't be that long until help showed up and, after that I don't know where he went. More over, since he had taken my cane when I was gonna put peeper in the car seat I couldn't exactly just start walking.

I would have if I didn't have Peeper to carry, but I couldn't risk tripping over something when I had him in my arms.

The driver had of course also moved the stroller, so I couldn't even put Peeper in the sleepingbag to get him out of the cold and the wind as much as possible. I found it after a while, but poor little peeper was already cold as ice. If he was at a high risk of infection before we went in, he's definitely bound to come down with something now.

The last thing he needs is to get sick again. He celebrated 8 months in the hospital and it'd be nice if he could be allowed to turn 9 months in our home.

A little bit of normal

Alex has the week off from school and, he actually went to his second lan party of the week last night. I'm so glad he's getting a chance to hang out with friends and live a little.

This experience has been hard on all of us, but life is confusing enough for a teenager without this extra added to it and, all in all it has been very isolating for all of us, including, or should I say especially for him.

Not all kids his age would head straight to the hospital after school to spend the afternoon with their sick little brother instead of hanging out with friends.

This makes me doubly thankful that little Peeper is doing well. He needss the strength he gains by not being sick and, we all feel better just by seing him well and happy.

Lately I've begun to feel as if our whole little family's got cancer, not just our little miracle. All that worrying and the many sleepless nights has turned into another rapidly growing tumor that's coming between us and, B especially is having a lot of problems managing his anger. But nobody's feeling well psychologically and, we're snappyish with each other all the time, so this chance to just rest and briethe is more than welcome.

Peeper's got a bit of a cold, but he's happy for the most part. Colds we can deal with.

He's playing and exploring and, his favorite thing to do seems to be opoening all the drors and cabinets in the kitchen and throwing all the stuff out on the flor.

If it wasn't for that I know what it means to see him as my little kangaroo-cub, when he doesn't have the energy to do anything but sit on my lap and cuddle, or be carried around in the carrier, he'd probably drive me crazy; nothing is safe from those curious little hands of his.

In other words, he's doing all those things a 9-month-old baby should do and, it is wonderful to see! I don't mind having a little gremlin in my kitchen, as long as it's a happy little gremlin.

International Childhood Cancer Day 2012

Today, The 15 of February is International Childhood Cancer Day 2012. This is a day to turn your thoughts and attention to children suffering from cancer all over the world and, to show support for them as well as their families.

The day is marked by local activities, information and, fundraising all over the world.

Each year, more than 160,000 children are diagnosed with cancer, and about 90,000 die from the disease. With prompt and effective treatment, most childhood cancers can be cured – but global statistics expose a shocking disparity - in developed countries, around 80% of children with cancer survive, but in low resource settings this figure falls to 20% or even 10% in the world's poorest countries.

Poor diagnosis coupled with too few specially trained doctors and nurses and the mistaken belief that child cancer is too difficult to cure combine to create very low survival rates. In fact, at least 50% of child cancers can be cured even in resource-poor environments with relatively simple and inexpensive drugs and procedures which have been known to doctors for decades and, yet tens of thousands of children die needlessly every year from the disease - most dying without any effective pain relief. .

The "international childhood cancer day" day was established in 2002 by The International Confederation of Cancer Parent Organizations (ICCCPO) to raise awareness of the importance of early detection and diagnosis in the treatment outcome of childhood cancer all over the world.

The International Confederation of Childhood Cancer Parent Organizations (ICCCPO) was set up in 1994 and is an umbrella organisation currently representing 148 parent organisations in 81 countries.

The experience of a child undergoing cancer treatment is traumatic, distressing and isolating for parents and siblings as well as the patient. The impact on the whole family has been well understood by health professionals for many years, as has, the medical needs of the child, but also the necessity to provide services which look after the emotional and social needs of the family of the child.

Parent support groups have been formed over the past thirty years to provide information and practical, emotional and financial support for families to enable them to cope with the difficulties associated with lengthy treatment - often many miles from home.

To treat certain cancers in low and middle income countries can cost a fraction of the price of treatment in the developed world due to the treatment used and technology available. Therefore, anything you can fundraise or donate will have a significant impact on children’s lives.

Support World Child Cancer today!

Things, can always get worse

There's a small voice wailing in the corridor outside room 23 at the pediatric oncology ward.

A little newborn baby by the sound of it.

The parents are walking back and forth...Back and forth...Waiting for a nurse to help them...trying desperately to comfort their little one...But nothing they do can soothe the little baby's echoing cries.

So they're waiting...

That's all we do here...We wait...And wait...And wait...

They've been walking up and down the corridor for 20 minutes now...

, And I'm wondering if the little one has got a portacath...And if so; did that needle get screwed up as well? Is he or she in pain due to the cannula slipping out of the vein, causing the chemo drugs to leak out under that soft baby skin...bringing on God only knows what damage to the tissue...Until there's no more room and, the medication start wetting that white little shirt. Contaminating the skin...Possibly making him or her violently sick in a few weeks...And if nothing else, robbing him or her of the much needed effect of the chemo and, prolonging the treatment...

When the nurse finally does come. Will he or she scratch their head and, make them wait another 15 minutes for the doctor, without checking things, so that the leak isn't discovered until the little one's clothes are soaked and, the chemo meds are coming through to his or her mom's clothes as well? Spreading the toxic substances to her skin ...Perhaps making her sick...Perhaps causing a miscarriage or a birth defect in a little baby later on...And, most definitely increasing her chances of developing some kind of cancer herself in a few years...

Those are the thoughts that are going through my head, but it's of course possible that they don't screw up every day and, that little peeper and I are the only ones whom will need to worry about those things today...

And here I was worried about what the chemo in his body fluids could do to me...

On a positive note, the first chemo treatment has just proved to be successful and, the eye doctor was able to start laser treatment on all 3 tumors this time.

Yes, they're 3 now, but it's not because they have been seading... The tumor he had in his right eye turned out to be 2 that had grown together, so that they gave the impression of being one bigger tumor instead of 2 smaller ones. Apparently there was a suspicion of that after the EUA last time, but nobody saw fit to let us know about that particular little detail....

I suppose though, that ultimately it doesn't change anything. The treatment will go on according to plan - a plan that they probably screwed up big time now that most of the Etopocide ended up under and on little Peeper's skin and, the rest found it's way to mine...

All the oncologist had to say about it was that it was "unfortunate" but it happens and, the eye doctor said that he didn't think it should have that much of an impact; but nobody knows how much, if any, of the drug that he actually received. I guess we can be grateful that it was one of those that one should just wash off with soap and water if it ends up on the skin; there are others that are caustic...

So, as always, it could be worse...

There's another little girl here, at 6 and a half months, who's got the same diagnosis as our little miracle. She has however not been as lucky and, has after 6 chemo treatments lost one of her eyes, while the tumors in the other one has proved to be more aggressive than they thought. She will now have to go through another cycle of chemo therapy with stronger drugs, which hopefully will save at least some of her eyesight.

In the light of that, we're incredibly lucky...And, it could be worse...

In a rich man's world

If I was rich...

That's probably something all of us who don't have a fortune stacked away in the bank really like to dream about; what would we do with $1 M?

What would you do? Quit your job? Travel? Invest? Buy an apartment, a house, a mansion? Give your kids everything they wanted? The options are unlimited... Or, at least they use to be...

I know it's such a platitude, : but "money can't buy everything..."

I know, I know, to quote one of my favorite characters in the literary world, Rhett Butler from "Gone with the wind": "generally it can and, when it can't it can buy some of the most remarkable substitutes."

If you had asked me a few months ago I would have agreed with that wholeheartedly, but when it comes to having a 8-month-old who's been diagnosed with cancer, there's only so much that money would be good for...And yet we're in need of money more than ever...

Even here in Sweden, where the health care is so affordable compared to many other countries, one would almost have to be rich to be able to afford to have a child suffering from cancer.

So you see I haven't stopped dreaming about money, but I dream of other things.

If I was rich...

I would have been able to take a cab home from the hospital with my baby today, instead of waiting around for almost 4 hours before the transportation service came to pick us up.

My baby, who by the way is so prone to get infections due to chemo treatment that he's not allowed to be around other people, much less take public transit.

This means that the hospital makes sure that we will get a cab at a reduced prize. They even let me borrow a car seat when they released us this past Saturday, which was a great help and, something that I sincerely appreciate.

At first it was said that I could borrow it until we had been able to buy a car seat of our own, but it turned out that I would have to return it when we came back to the day time ward for blood work today.

I know I know, I had planned to get one earlier, but with all this tripps to hospitals all over the country, I had to prioritize...

With both of us being legally blind and, obviously not able to drive a car, a car seat seemed to be something we could live without for a little while longer. Little did I know how much we would need one...

Now I was stuck at the hospital all Saturday and, there was no way I could get that taken care of yesterday, so I had planned to walk home. But the temperature has suddenly decided to drop to 17 below, so I obviously can't run the risk of dragging my little one around out there for the 30 minutes it takes to walk home from the hospital.

"No problem however," since the nurse at the day time ward had figured out that the transportation service would have car seats available and, as long as the hospital book the transportation, little Peeper would have the right to his own cab with a car seat installed...

Does it sound too good to be true? Well it was...

On the way over there I of course still had the car seat that they loaned me a couple of days earlier, so I never thought to ask the driver about it. It turned out that I was lucky to have it, or there would very likely not have been any blood tests today.

The interesting part started when the same driver came to pick us up to go back home. He showed up at 11 o'clock, just like he was suppose to. That is otherwise generally where they fail; most of the time they're at least 20 minutes late, which is why I prefer the buses. But you gotta do what you gotta do and, in a situation like this one, it's of course invaluable to have the option to take our little one straight home....That is, until the driver obstinately claims that they do not provide car seats for babies and, if I don't want to hold the baby on my lap while he takes us home, there is nothing he can do for me...

I of course refused and, asked him to wait a minute to see if I could borrow the car seat from the hospital again, but he just snapped that he did not have time for this "bullshit" and, just like that, he got in his car and left.

The nurse who took care of little Kangaroo-cub's blood work of course called the transportation service right away. They explained that there had been a mistake, but they'd send a car over as soon as possible...At 2 o'clock...

Yeh at 2 o'clock...

So..We sat around and waited for 3 hours in a room used for counseling at the day time ward, so as to keep us separated from the other children.

At 2 o'clock, a nurse walked with me to the main entrance of the hospital and decided to wait with me to make sure that nothing went wrong this time. The cab driver arrived shortly and, told her that there was nothing to worry about; he'd make sure that we got home safely.

We got as far as to his car and, I even got to put Peeper in the car seat and, that's when the trouble started again...

The driver did not know how the car seat worked you understand...

I obviously didn't know either; it was the wierdest contraption I've ever seen! There just didn't seem to be a way to adjust the straps for the seat belt, so we couldn't buckle him in there.

The driver kept complaining of how:
"he didn't have time for this"
"Didn't have any education that had taught him about car seats..."
"Couldn't be expected to know anything about Kids and their stuff."
"Couldn't understand why I hadn't just bought my own car seat."
"Couldn't understand why I couldn't just hold the baby on my lap, cause he really didn't have time to call the people responsible for the reservations and, try to get someone else, who knew about these things, to explain or, come over"

On...and on...And on...

Finally he said...Yeh, you've guessed it... That if I wasn't willing to just hold the baby on my lap while he took me home...There was nothing he could do for me..And, so he too, got in his car and left...

I did however get this one to call the transportation service first to tell them to send someone else over and, his definition of the solution to the problem was to tell them to "send some women over who could be expected to know about kids and car seats..."

I still can't believe that this was the second driver with in just a few hours who thought that "a car seat wouldn't be necessary" and that "It wouldn't be a problem to cheat a little just this once."

Did I mention that, aside from the obvious security reasons, this is also not recommendable since it's against the law to have a baby in a car without a car seat in this country?

I wonder if they'd still would think so "little" of it if my baby died in an accident in their f**king car...

Anyway, Back into the hospital we went... To borrow the phone from the lady in the reception this time...

She got upset when she heard what happened and called the transportation service herself to make sure that they would get a move on, but...They didn't have any cars available until 2:40. By then that was just 20 minutes away, so there was no point in getting someone to walk with me to the day time ward again, cause we would have to turn around and come back right away.

This of course meant that I had to expose my little Kangaroo-cub to all the potentially harmful people sitting and waiting around us or, just passing through the reception area, whom for all I knew could be crawling with bacteria, germs and viruses...

I know that sounds absurd, but that's more or less how I think of other people these days, cause they are all a potential threat to my baby's vulnerable health.

If I was rich...

I would have had a way to tell B not to worry about us and, he wouldn't have been forced to wait around out dores for us in this cold weather....

But since we only have one set of keys at the moment, since Alex has lost 3 sets by now, including the new set that my uncle got after losing the remaining one, B had to stand around over here and wait for us after he got back from his appointment at 12:30 or so... We should have been home waiting for him by then.

A new set can be had for 1000 Sek, about $170, so that, like most other things, will have to wait for now...

When I got home B had gotten tired of waiting around and, gone over to the hospital to look for me. I had not been able to call him, cause just the day before we were suppose to go to Stockholm for the first Chemo treatment, we had the pleasure of figuring out that Nokia phones do not like microwaves...

A new cell phone with accessibility potential, meaning one with the Symbian OS, which can be made accessible with either: Nuance Talks or Mobile Speak, doesn't come for less than $400 or so. The alternative is an iPhone, which has built in speach, but an iPhone 4 is right now around 6000 Sek, or $1000 , so go figure...

By the way, Nobody knows how the heck the phone ended up in the microwave, but we're incredibly lucky that I was just gonna warm up some water for little Peeper's cereal. Had it been left overs for dinner or something like that I might have left the kitchen and, so I would never have heard the strange sound that got me to immediately turn the freaking thing off.

Bye Bye apartment...

In the light of that I guess it's no big deal that I had no way of notifying B of the situation with the transportation service, but you know how it is; it could always be worse. But that doesn't stop me from wondering why...Why... out of all times... did it have to happen right now...

If I was rich...

I would hire someone to change my baby's diapers for 72 hours after the chemo therapy, since I cannot change him with gloves on...nor can I clean up if he gets sick and throws up, cause when one is blind, there's just no other options available than to use ones hands to make sure that everything's clean. The thing is, that even though we of course wash our hands thoroughly afterwords, the chemo drugs are highly absorbent, so who knows how much of them that ends up in the blood stream anyway.

While the chemo drugs are being administered the nurses have agreed to change him for us, but once we're released we're on our own...

This even though they recommend all parents to wear gloves during 72 hours after the chemo treatment, because the drugs are present in all body fluids. Especially urine and vomit...

Naturally, I've demanded help with this, but all of a sudden the chemo drugs aren't very dangerous at all...

"Oh no, it's enough to just wash one's hands after the diaper change; no worries..."
"The gloves are just a recommendation; not a necessity..."
"Don't we know that it's the parent's responsibility to take care of their baby?"
"A little chemo never hurt anyone. and, they only wear protection because they work with the medications every day."
"no they cannot understand why we're freaking out about this."

Right...

That must be why they recommended gloves from the start; I'm sure...

It must also be the reason why exposure to chemo drugs are asociated with:
Miscarriage, birth defects and, several types of cancer...

Yup...I'm convinced that's how it is...

I guess we'll find out, since I'm at a 50 % chance of getting some kind of cancer before I reach the age of 50 anyway, due to the Retinoblastoma gene mutation, which is present in all the cells throughout my body. So why not add a little chemo drugs exposure and make certain that I don't fall outside of the statistics...

Also, now that we've figured out that preimplantation genetic diagnosis (PGD) can be used in conjunction with in vitro fertilization (IVF) to screen our embryos for the RB-gene to avoid passing it on to another baby. Yeh then a couple of birth defects would of course be welcome instead - That's what all of you would want for your children; right?

If I was rich...

We wouldn't have to be hungry while staying in the hospital...
I know, it's completely ludicrous, but it's the truth.
There are no stores close by the hospital and, since both of us are legally blind, we can't exactly start taking buses in the search of one and just hope for the best.

This means that it's impossible for me and Brandon to eat anywhere but in the hospital cafeteria, where a hot meal is 80 SEK, that's 160 SEK a day, just for dinner. A sandwich is 45 SEK, so add another 90 for breakfast. Add something to drink and that'll be another 50. I suppose we can make it through on that, but that's still 300 SEK, or $50 that we have to pay daily, just to eat and, eat a little at that...

But at least it's only for 5 days every 3 weeks.. and, the coffee is free, so it's not like we're going to starve, but still...

If I was rich...

I wouldn't sit here and stare at a budget for hours. Calculating and re- calculating. Hoping maybe money would just magically appear...So that we can fly home after the chemo, instead of dragging little Peeper around on a train for 8 hours before we reach our destination.Knowing every second that he could contract something that'll mean going straight to our local hospital when we get home.

No such luck however!

3400 SEK one way for the plane tickets, As oppose to 1200 Sek for the train tickets speaks it's own language; we can't do it... My brain is spinning in a million directions; I just am so frustrated!

I suppose, Since we can't sue neither angels nor demons for giving us such a shitty start to 2012... Perhaps we should just try to sue Nokia for not having a warning about cell phones and microwaves... I don't know... All I know is that more money can feel free to materialize in my bank account any time!

Updates from room 23

• Same squeaky bed.


• Same, unfortunately a lot sicker, baby sleeping in it.


• Same devastated mom sleeping next to him.


• Same desk next to the bed.

Same tv on the wall...

The tv can at least distract us somewhat from the depression that comes poring out of the walls in this place;we're watchin a movie together every night before Alex and B have to go home...

• Same 2 chairs over by the window where Alex and B can sit during the afternoons.


• Same little coffee table between them where we can take turns having our meals.


• Same smell of antiseptics in the air covering everything like a sticky blanket.


• Same room where the seconds are crawling by no matter what we do.


• Same dreary Hospital...

The days are long here; but the nights are longer...So, so much longer...

• Same empty couch/bed where B should be sleeping.


• Same loneliness lingering here late at night...


• Same panic trying to swamp me.


• Same worries of losing my little miracle drowning out all rational thinking.

Different day and, Different reason however, as Little peeper now has developed a fever, which may, or may not, mean that he has bacteria in his blood. He also has a terrible cough and, a lung x-ray has been made to exclude pneumonia.

They have also detected a slight heart-murmur and, an ultra-sound is to be made as soon as possible. They find this in about 60 % of all children and, only about 1 % really have a heart problem, but they of course have to investigate to make sure.

There is a suspicion of chicken pocks as well, but he's only got 2 little blisters so far, so it may also be something else. On top of that the incision on the side of his neck, where they went in while inserting the portacath seems red and irritated and, may be infected.

My little kangaroo-cub is mostly sleeping and, is for the most part too tired to play when he's awake. He's just sitting there on my lap, all quiet and, when Alex or B tries to take him he cries.

he gets a little bit of energy When the paracetamol kicks in and, at those times he even laughs a little, but after a while he just cries and cries again.

He's eating a little, so thus far it hasn't been necessary to put in a tube, but instead he's on an IV to keep him from becoming dehydrated.

He's getting antibiotics every 6 hours, some other kind of medecin 5 times a day to help his immune system fight chicken pocks. Paracetamol to keep the fever down and, the medication against nausea when needed. I realise that it's necessary, but I feel like he's being turned into a living pharmacy.

Another problem is that the antibiotics may help him right now, but it'll weaken his immune system even more than before. I don't know what kind of side effects the other medications may bring on, but I can tell you that his stomach is not reacting well.

We have changed a million diapers today and, the fun continues; I changed the last one about an hour ago and, like most of them to day, it was leaking all over the place... But worst of all is that it adds to the pain he has to deal with and, increases the risk of dehydration even more.

I Hate the cancer that does this to my baby!!! And I hate the Chemo therapy too!!! The only thing that can help him conquer the Retinoblastoma is making him more sick than the cancer itself. That would change, I know, but before we started the chemo treatment he was, if only outwardly, a perfectly healthy little baby.

MY LITTLE KANGAROO-CUB

Everybody around us has been wonderfully supportive through the beginning of this ordeal and, I'm thankful to be surrounded by such caring and loving friends and family.

Little Peeper's God-parents got us a Babybjorn Comfort Carrier right before we went to the children's hospital in Stockholm, so that we wouldn't have to bring the stroller on the train. There's really no good place to put a stroller on there, at least not if one is a bit skeptic to believing in other people's honesty, something that I'll admit I gave up on years ago.

I prefer to be able to keep my belongings close by at all times when I travel, especially after the time when an old lady almost got away with stealing my suitcase, containing pretty much everything I owned at the time, or at least all that I could carry, including 2 weeks worth of clothes and, my beloved laptop.

I had been abroad participating in a tournament and, after that I had visited with friends, so I had been away from home for a while.

Alex had been staying with my mom and, the train I was on to get home was gonna make a stop at a station near by where my mom lives, so she was gonna put him on the train so that we could go on home together.

It was only luck and, my observant 10-year-old which allowed my mom to catch the thief. Had she attempted to steal it at any other station along the way, Alex would never have seen her and commented on that the lady had mom's suitcase...

My mom of course just thought she had one that looked like mine, but when Alex joined me, we went to get the laptop out and, discovered that my luggage was gone. I called my mom and, she just yelled that she saw the witch who took it and, then she ran...

The witch in question appeared to have been collecting stuff both here and there, cause she had a million different suitcases, backpacks and bags to drag around, which was good for us, cause she hadn't gotten very far.

At first she tried to hold on to the suitcase and say that it was hers and, when my mom said that it belonged to her daughter and, pointed to the name tags which were left on there from the plane ride, she tried to say that I had asked her to get it off the train for me and, then I had disappeared. Still she would not let the suitcase go, but she got scared when my mom mentioned the police.

We should have reported her anyway of course, but my mom's main concern was to get the suitcase back to me before the train left and, by some kind of providence the departure had been delayed so she managed to hand it over right as we were getting ready to leave.
Meanwhile the lady had of course disappeared, so there was no point in calling the police; after all I had gotten it back, so they wouldn't waste their resources on trying to find the thief. Anyway, this is why I don't want to bring anything that can't be stored above my seat on the train.

For that reason and, many more the Babybjorn works great for us, I totally love it! He doesn't feel heavy at all to carry around for hours and, he loves to be that close to me all the time. Except when it's windy or raining outside of course...

There's no easy way to protect him from the wind and the rain blowing in his face and, the first time it happened he got so scared he was shaking all over before I could turn him around so that he was facing me instead of facing forward. But with the way the wind is here on the west coast, not even turning him around keeps him completely sheltered from the weather.

There's a cover one can by extra that'll keep the baby warm and, protect against wind and rain, but to be honest we can't afford it right now. We weren't rich before this ordeal started, but the traveling back and forth to the children's hospital in Stockholm and, the living expenses up there is not gonna help matters one bit. The medecins aren't cheap either even though I know that we can thank the stars above that we're living in Sweden where health care is a lot more affordable than in many other countries...

Sorry, I'm complaining a lot, but the reason I have a blog is after all that writing allows me to vent as much as I want to so, I'll just go on complaining a bit more thank you...

Our little Kangaroo-cub turned 8 months this past Wednesday.

I read other rainbow baby blogs and, there are of course some rainbow babies who are the same age as our little one, who I up until now have loved to read about. But right now I'm at a point where I wanna comment on all of the posts I read, telling all these mothers, who have already suffered the loss of a child, to enjoy life while they can, cause tomorrow their precious little one may be diagnosed with Cancer.

I wanna tell them to hug their children while they can. Enjoy that they're developping normally, in their own way, while they can. Be grateful that they fussed all night because of colich and not side effects from chemo...

I feel a little bit like I did after I lost little Andreas. I envy all mothers that they can right down their babies new abilities while I'm forced to watch my baby being less and less interested in anything but being carried around in my arms and, at the same time I feel like a horrible person, cause these mothers don't need reminders of how fragile their happiness is...

I keep telling myself that I'm still lucky in a way; I have my little rainbow here still. My arms are not empty this time. Life just diddn't turn out the way I wanted it to... But I feel robbed just the same.

And always... Always... There is the fear of losing him... Of being left with arms aching to hold, a longing to care for, and a heart overflowing with love, but with no one to give that love to...

We thought we would get released from the hospital as an 8-month birthday present, but Unfortunately the delivery to the pharmacy had gotten delayed and, we still could not get his anti-nausea medication.

We got to go home over night though and after spending 8 days in the hospital in Stockholm and, then only getting out of that one to end up in another hospital for 5 more days 20 hours later, I kind of felt like I was being released from prison.

Our little kangaroo-cub was happy to get out of there as well, It was easy to see by the way he was smiling at everybody when we were leaving. I carried him out of here, but he was quite happy to be in the stroller as well once we got outside. We walked home of course, we can't take the bus now unless it's absolutely necessary, not with a baby with a week immune system. If one wants to catch a virus of some sort, that is probably one of the best places to hang out.

Little kangaroo-cub is by the way his new nickname in addition to: "little Peeper," and, "little Squeeker." Little Peeper is being used a lot more again, cause he has started to make little peeping sounds again, just like after he was born. Kangaroo-cub came about cause now that we got the Baby carrier, that's where he wants to be, all the time. Though I guess it doesn't matter to him whether he's in my arms or in the carrier as long as he can b close to me and, that's a kangaroo-cub for ya.

It's really sad, cause he was getting rather independent there right before we started the chemo, but with him not feeling good all the time, he has not really tried to crawl during the last week or so and, he almost loses his balance when I try to let him walk now. Just holding on to my hands like before is not enough, I have to hold him up under his armpits.

He has always loved jumping up and down, even when they gave him the chemo, it was hard to get him to stay still and, to keep those little curious fingers away from needles and lines. But perhaps that was just a trick of the blood transfusion... I don't know...

All I know is that I want my old little bundle of energy back.

He is better now and, that is something to be grateful for. But he is not back to normal and, I wonder when he will be and, how much this will set him back. In just 10 days it's time for another round of chemo and, I just wanna cry...

He is enjoying toys again especially the keyboard they have in the hospital, but he plays too quietly now. How I wish my arms were tired from helping him jump up and down again...

He's in pain a lot of the time and, he ate almost nothing for several days, he's got some catching up to do, so of course that takes it's toll on him. It's not that I don't understand that... I just wish things were different...

Another day another hospital

We're back in the hospital again... Closer to home, but the hospital is the hospital is the hospital...And, we've just about had enough of those lately.

Little Peeper does not want to eat. He's getting better now, but all in all he's more or less refused to nurse since Thursday unless he gets medication first and, at all other times that's his favorite thing to do.

I mentioned in my last post that he wasn't any to keen on food during the train ride home from Stockholm, but I thought that some of that could be attributed to the long trip and, all the distractions around us on the noisy train. He would however only nurse once during the night between Thursday and Friday and, at the time that was the first he had eaten since around 9 AM that same morning, before we left the hospital in Stockholm.

In the beginning he would take a few swallows here and there when I offered him the nipple, but towards the end he just turned his head away as soon as I started to unbutton my shirt. We did manage to drip a little bit of water in his mouth with his bottle, but he didn't want any too much of that either.

We need to change his diaper at least every 3 hours during the chemo treatment and, for the next 3 days afterwards to protect him from the chemo drugs, as they are present in all his body fluids during that time. So when I noticed at 5 this morning that for the second time around his diaper wasn't even remotely wet, which meant that I changed the last one that had anything in it on the train around 10 PM or so, we of course went straight to the ER. This would be alarming for a little baby under any circumstances, but the chemo therapy makes him even more prone to dehydration than usual, so it was very worrisome there for a while. God how I hate this Retinoblastoma!

He did however have a wet diaper as soon as we got there, so at least they didn't have to hook him up to an IV right away like I thought they would.

At first they just wanted to keep him here in the hospital for observation, during the day but that has turned into 5 days and counting.

The first doctor we met thought that he was constipated. She wanted to give him an enema, but wasn't sure if she could do so, since the chemo
drugs makes him bleed very easily and, we're not even allowed to use a Rectal thermometer to take his temperature.

She got off before she got the chance to do anything at all really and, the next doctor, who we new from little Peeper's time in the NICU, thought that he was probably suffering from nausea due to the chemo and, wanted to keep him here to see if he would need a little extra support with an IV and, perhaps a tube. He mentioned that one should be careful when putting a tube in, just in case he was refusing foods because of constipation. On the other hand it wasn't that strange that he wasn't going to the bathrom when he wasn't eating, so in his opinion it shouldn't be a problem to do so.

When we got to the pediatric ward, a third doctor seemed to share his opinion, but apparently the nurses objected to the tube for some reason.

They came in here with all kinds of theories:

He could be teething, his throat could be sore, or he could be constipated. He could not however, be nauseas due to the chemo therapy, since he had not been throwing up...

We all know that right? We absolutely have to vomit every time we feel nauseous...

The most outrageous theory they presented was however that he could simply have decided that he was too old to nurse...

As if he would just quit nursing when it's impossible to get him to take a bottle and, he only eats solids if he's extremely hungry. Would a baby really refuse his only supply of food because he thought he was too old to nurse? Talk about grasping at straws to be able to convey your own opinions and values!

Well I'm sorry, but I'm not going to apologize for breastfeeding my 7-month-old just because somebody else thinks one should quit at 3 months...

I've never been more determined to keep breastfeeding than I am now. What ever antibodies he can get through the milk will make a difference to him when the chemo makes him susceptible to all viruses and infections that happens to come our way.

More over, He'll need all the closeness and safety he can get.
Not that you can't have that when you're bottle feeding. It's of course possible to hold your baby every time you feed him or her with a bottle as well. It's just that most people don't...Not at this age when they're old enough and often want to, hold the bottle themselves.

Either way it'll be a while before there will be a good time to try to wean him off of it and, quite frankly, as long as it helps him, I don't care if he's still nursing when he's 3 years old.

I seriously don't understand why the doctor wouldn't just put his foot down. He said that they would need to put the tube in around 1 pm, but just to please the nurses, little Peeper had to go without food and water until 8 o,clock, when they finally excepted that he wasn't going to eat neither hot cereal, mashed fruit nor formula. Something they thought he would do if he only got hungry enough... This even though his diaper at 4:30 was completely dry

The same logic does of course apply here, when there's nothing coming in, there's nothing going out, but who knows what this will do to him considering that the chemo drugs weren't being flushed out of his system the way they were suppose to.

I argued and, argued, but to no avail...

We didn't see that team of nurses again during our stay and, I think they should be grateful that we didn't, cause when we finally got them to accept that he needed medication against nausea he started eating again just fine. Believe it or not, but that took almost another 24 hours...

They finally put a tube in that night, but Peeper totally lost it when I started to give him food. I have never heard him scream like that and, he was gagging every time I pushed in a few more ml through the tube. I later thought that the syringe containing the food felt awfully hot and, I wonder if they had gotten the milk too warm, but I'll never know.

After 30 ml I gave up, cause he just would not calm down. The nurses just shrugged and said that they were use to babies getting angry, but with a baby who hardly said a peep during the whole ordeal with surgery and chemo treatment, I had no doubt in my mind that something was awfully wrong and, I again tried to tell them that he was nauseous, but got the same answer "but he's not vomiting, so he can't be..." This time however I made them call the doctor again.

At times I thought he was constipated, cause he was screaming in the same way that he did when we were here for the suspected block in his bowels, but on the other hand the nausea could be enough to make him cry like that as well.

A 4th doctor now came to see us, but I trust this one, he was the one who noticed that little Peeper's blood count was low when we went to the ER and, then went out of his way to make sure that everything was done to get him the best help possible.

He even contacted Stockholm to make sure that they had his results in case that would alter something with the upcomming chemo therapy, which it actually did, cause they had blood ordered ahead of time for the surgery, so they were prepared when his red blood cell count dropped to 71 during the procedure. It's possible that they would have been prepared anyway, but I'm sure that the extra warning didn't hurt.

Anyway, he didn't really have any answers either, but he said that peeper's throat looked as if it was very sore and, he had blisters in his mouth, another side effect from the chemo,but he didn't think that should be enough to keep him from eating for this long, since there's no swelling or anything like that...

To rule out constipation, he ensured that he was given an enema, cause even though one's not suppose to give that during chemo treatment he said that it was safe as long as peeper's blood count was still normal.

Our little one seemed to be feeling a little bit better after that and, he even ate a little bit, though it wasn't more than like a third of what he usually devours.

During the night he managed, true to his old habits from the NICU, to pull the tube out...

The next morning, he had lost 200 grams and, he didn't have any wet diapers, but the same team of nurses from the afternoon before was back and, the, now fifth doctor, thought we could wait to put a new tube in, cause "the baby would probably eat when he got really hungry...."As if we hadn't tried that already... Shouldn't he be hungry enough as it was? He had barely had anything to eat since Thursday morning for heavens sakes!!!

I don't give much for that docter in any case, cause he prescribed a pain medication for peeper that he is not allowed to combine with the chemo therapy drugs; some doctor eh?

I've gotta say that I'm surprised at the ignorance among a lot of these people. I realise that they can't all be oncology experts, but if I hadn't known the simplest things such as that they're not allowed to use a rectal thermometer, neither to take his temperature nor to remedy constipation, God only knows what would have happened.

Same goes for fever. He's not allowed to get a temperature higher than 38 degrees C, cause one of the things we must look out for is bacteria in the blood due to the etoposide he's been given, but they calmly stated that anything less than 38,5 was not considered a fever at the pediatric ward, as it's always manageable up until that point...

The new team of nurses came on around 3 pm and, . By that time I made a point of showing every single one of his diapers to a nurse to make sure that they didn't think I was making it all up.

One of them is on the oncology team for children, so she finally made sure that something was done, though we had to wait for another doctor to come on her shift since the one from that morning apparently wouldn't change his opinion.

It was the doctor who first saw us when we came into the ER who was on call for the night and, she immediately started making phone calls to the pediatric oncology ward in Lund to look up side effects of the chemo drugs little Peeper had been given. She then quickly prescribed medication against nausea and, about an hour later he was eating again. She also made sure that he would get extra food through the tube to make up for all he had lost during the time without food and, liquids the next morning his weight was back up again.

We were ready to go home Monday, but they were out of the medication he needs at the pharmacy and, they won't get a new delivery until Wednesday. At the same time they have apparently run out at all the wards here in the hospital as well, so the only alternative is to keep giving it to him intravenously. So by the looks of things, we will celebrate Peeper's 8-month birthday by going home from the hospital.

Doing good; from the perspective of the paediatric oncology ward

It's been 2 weeks since the eye doctor walked out of surgery and told us that she suspected our little miracle to have retinoblastoma, a rare form of rapidly growing malignant eye tumors which can also spread to the brain and bone marrow...

2 very long weeks...

I think of the day a few months back when the thought of putting our little miracle through just 1 EUA, had me terrified and, the many sleepless nights I've had since another eye doctor told me about the likelyhood of me passing on the gene mutation and, that there would have to be about 30 EUA:s done between now and his 8th birthday.

This is when I realize that it all comes down to perspective...

In the past 2 weeks he has had 2 EUA:s done:
One where first suspicion of the eye cancer was raised and, another, on Friday the 13th out of all days in the calender, which confirmed what the first eye doctor had said, just like we knew it would.

She called me 2 days after the first examination, just to make sure that the hospital in Stockholm had contacted us and, also to check on us and, to see if she could help us by refering us to counseling or the like. I asked her straight up if the changes she saw in his eyes could be anything but the Retinoblastoma. She said that she was not allowed to say, cause the second EUA done, to find any possible metastases in his brain or bone marrow. For the same reason, a bone marrow examination and, a lumbar puncture was also made.

On top of that he had a portacath, the main form of a central venous access device, inserted so as to avoid damage to the smaller blood vessels and, skin and mussel tissue during the Chemo therapy. With the portacath one is now enabled to deliver the drugs quickly and efficiently via the circulatory system.

After all this, which by the way took 4 hours to complete, he also required a blood transfusion, since his red blood cell count dipped to 70 during the surgery.

Next up he also had to have a x-ray of the lungs, to rule out that the portacath had in any way been placed so that it could injure the lung and, when the x-ray confirmed this he was all set for his first round of chemo therapy.

This was around 8:30 PM Monday night, but the doctor on call for the evening still thought that we should just go ahead and start the chemo treatment. The nurse however disagreed. She thought it'd be better to wait until morning when there would be plenty of doctors around, since it would be his first cycle of chemo therapy and, one couldn't be sure how he would react.

They asked us what we'd prefer and, we of course said that we wanted to wait until morning, but then the doctor said to just get it started anyway, which makes me wonder why they asked in the first place. There would be no chemo that night anyway though, cause wouldn't you know it, but his chemo drugs somehow came up missing, which the nurse calmly stated was "for the best"...

The chemo was administered during Tuesday and Wednesday and, little peeper didn't complain half as much as an adult with a cold. He is so brave my little miracle!!!

Through it all I must say that I have been surprisingly calm. I was more upset before we actually got to the hospital and got everything explained to us. Even when the news are terrible, it is always better to know what's going on.

That doesn't mean that I haven't cried and, I almost lost it when they had him in surgery for 4 hours, even though the nurses said that this was quite normal. But I later found out that he had been awake in between the examinations.

It makes me extremely sad to know that he was awake and, that we weren't there to comfort him. They told us that it's standard procedure not to call the parents down to the recovery ward until they are done with all that needs to be done, but I would have been there had I known.

You know that he must have cried for me and, it's unforgivable to let him lay there in need of and, calling for his mommy and, not let me answer that cry when he's waking up confused and hurting among strangers; I could kill them for that!

Still, this is the pediatric oncology ward and, we are among the lucky ones here..

Alex and B, who have been in and out of here to go to the store and such, have seen parents take their suitcases and leave without their children. There's a heartbreaking explanation to that which I can't really bear to think about right now.

This is a place where a good prognosis such as little peeper's gives new meaning to the word " gratitude"

he's got tumors in both eyes, but they are small and, far away from the optic nerve, which makes it hard for them to spread to the brain. More over, they should be easily murdered and, he will by the look of things right now, even get to keep enough eye sight to be able to drive a car some day in the future.

The MRI confirmed that there are no metastases in the brain and, no signs of Pinealoblastoma or trilateral Retinoblastoma, tumors of the pineal gland. This is extremely rare, but sometimes develops along with tumors in both eyes, bilateral Retinoblastoma.

The lumbar puncture confirmed that there are no strangely active cells in his cerebrospinal fluid.

We haven't gotten the results for the bone marrow samples that were taken from his legs yet, so as of right now, that is the darkest storm cloud hanging over us. Everything else we can deal with even though it's difficult, but the last thing he needs is complications. The battle of conquering cancer is much greater than what any baby should have to fight anyway.

The reason for me being so worried about metastases in the bone marrow is that I took him to the ER just 2 days before we left for Stockholm, because of a strange lump on his head, which has turned out to be nothing at all, but during that examination they also took some blood tests and, both his red blood cell count and his white blood cell count was too low, so it's no wonder they dropped during surgery. This could, at worst, indicate that the cancer has spread. If you pray, please do so... If you don't; please send him healing thoughts...

He has been wonderful throughout this whole ordeal. He is so incredibly patient and calm, even when they're poking him with needles, keeping him on the IV for hours and hours, so that he's not allowed to move around and play and, even now, after the 8 hours it took us to get home, during which he has refused to eat the whole time, he is super good and, has mostly just played and slept.

We didn't see our regular doctor when he was released from the hospital and, the woman who showed up instead claimed that he wouldn't be needing any medications when we got home. This is incorrect, I know that it was said that he would need medecin against nausea among other things. One of the drugs in particular, Vincristine, has really bad side effects, but the etoposide is not exactly a dream to deal with either.
Nausea, pain in the jaw, legs or arms, Blisters in the mouth, and, or, altering of flavor experience, making sugar taste bitter or salty, are just some of the things he may have to deal with.

I'm no doctor, but common sense tells me that a little baby neither can nor shall be expected to deal with such things without help...

He has eaten a little bit now, but I'll have to take him straight to the ER if he doesn't want to eat next time he wakes up. I contemplated taking him in as soon as we got to the station, but he had just had a wet diaper, so at least he's not dehydrated and, I thought just being in the calm environment of our own home could help make him feel better, but we'll see...

Caught in a nightmare

What can I say...
Last night I was worried about nightmares... Today I'm living in one...

I did the research. I tried to be prepared for the worst, but somehow I must still have been stupid enough to think that life would finally cut me a break, but I see life gives breaks to no one.

Nothing in life can prepare you for the day that a doctor walks out of surgery to tell you your 7 month old baby is very likely to have malignant tumors in both eyes. That because of the necessary treatment of this disease, the life you dreamed of having with him is not the life that you will get to live...

He was such a little warrior today. We had to get up at 4 AM to be able to be in Ludn by 7:30, so that the eye drops which dilates his pupils would have time to take effect before the examination. He was also to get something to make him calm before he was given the anesthetics. I honestly thought it'd be a hard time getting over there, since he wasn't allowed to eat, but he was so super good the whole time during the trip over there and, during the 30 minutes we had to stand around and do nothing while waiting for the department for day surgery to open.

They let us in around 20 after 7, so I thought that we might even be starting early, but they didn't even do anything for the first 30 minutes, except give me some paperwork to fill out, which they by the way did not want to read to me, so Alex had to do that. The nurse didn't straight up refuse, but when I pointed out to her that I would need help to fill them out she quickly turned to Alex and, asked him why he couldn't do it. I again, pointed out that he's 14 years old and, that it's important that everything's done correctly, but she just shrugged it off and walked away.

I'm assuming that she didn't want to listen to little peeper screaming from such a close distance, but hey, I'd be screaming too if I was starving and nobody would give me something to eat.

You'd think that could motivate them to hurry things along a little bit, but instead they let him cry for 20 minutes before they finally gave us a room and, got him the medication that he needed. There were no other patients there, so lack of time was not the reason for this. Needless to say I was about to start screaming myself...

He got sleepy right away after he had gotten the medication however. He didn't fall asleep, but he was super calm. I was a little bit worried about that, cause that sort of medication had the opposite effect on me when I was little. If my mom is to be believed that is; it may just have been that I of course, like any child who has been forced to go through difficult treatment, had learned to fear the hospital.

I went with to the operating theater and, stayed with little Peeper until he was asleep. They couldn't find a vein at first, so it took a little while before they could start. I had put a anesthetic cream on his hands, but I was worried about that too. I'm allergic to that cream myself, so I wasn't sure if he would be too. That and it was very hard to get the band aids to stay on. They use the same ones for babies and adults and, it doesn't take much to figure out why that is a bad idea.

They were way too big, so he could easily get a hold of them and pull them off. That and, he kept trying to eat them, so I was afraid that the cream wouldn't have had any effect at all even if he didn't have a reaction to it. I'm really grateful that it worked, cause he didn't feel a thing even though they had to try over and over.

He just kept trying to eat on their hands and, he was talking away to all of them in his own adorable way. The people in there were great and, I was a lot calmer coming out of there than I had been walking in.

I wasn't allowed to stay during the procedure, but the whole thing took no more than 15 minutes and, I knew right away that something was wrong, cause the doctor asked for a private room where she could speak to us and, if he had been alright she could have just said so there and then, cause there were still no other patients around in the waiting room.

She suspects one tumor in the center of his right eye and one to the side of Macula in his left one. She's not allowed to say that it's Retinoblastoma, cause we have to go on to Stockholm for further testing, but that is still what we have to prepare ourselves for.

B wants to believe that there is still hope that it won't be the cancer, but I don't think so. It's better to be prepared and, try to take in that that is what it is. There's no reason to be an ostrich. It won't all go away no matter how deep we try to bury our heads in the sand...

After the meeting with the doctor we could go sit by Squeaker's bed and wait for him to wake up. I'm not sure how long it took, but maybe 30 minutes or so. He didn't even fuss or anything when he came too. He was content with that he was finally allowed to eat and, after that he just wanted me to hug him and, he kept wanting to give me kisses over and over.

I just wished that I could curl into a ball around him and, protect him against all evil. Or that I could take him back into my body so that he'd never have to know about vile things like Retinoblastoma.

As parents, our basic instinct is to strive to protect our children. We'll live for them. We'll fight for them. We'll die for them. If I could take the cancer for him I would. But there's nothing I can do... Nothing... Except watch him suffer and, try to motivate him to fight. Though I'm not sure how to do that, when all I want to do is cry...

All I can do is hold him when he cries and, try to comfort him and, lie that everything will be alright. It will not be alright!

He will have to deal with all sorts of terrible side effects from the Chemo. He will lose his wonderfully downy hair, He will be sick. He will be hurting. He may even lose hearing and, in the end he may lose his vision anyway. He will be in pain. He will be crying and, he won't understand what's going on. And there's nothing I can do... Nothing...

It’s like being struck by a bolt of lightning on a cloudless day. One day life seems so normal. The next, you are snatched out of that existence and thrown into a world where everything seems like a nightmare. No warning! No way to prepare or put things in order. The world as it has always been, has changed its course forever and, nothing will ever be the same.

I've learned the hard way that life, more often than not, refuses to deliver our hopes and dreams. Once upon a time I had a dream about a miraculous recovery for my little Andreas and, it was to no avail. It took time. But finally I dared to dream again; oh for a healthy, wonderfully soft and warm little baby to fill the void of my existence... And this time... It came true.

My little rainbow, the apple of my eye, my Joy, The reason I wake up happy these days even without the antidepressants. My every day motivator and, the reason I remember even in my darkest moments that there is always the sunrise to look forward to. The reason I tell people that even when there's nothing else, there is always hope. Along with his brother he is all those things and more, but he is now also one more thing... He is a cancer patient; and my world, my dream, my heart are all dying...