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!!!
Showing posts with label Anger. Show all posts
Showing posts with label Anger. Show all posts
Monday, March 19, 2012
Tuesday, January 31, 2012
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.
Friday, January 27, 2012
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...
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...
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