Around this time a year ago, our little rainbow baby had arrived safely and, was finally sleeping soundly on my chest. He was early, but week 34 was above and beyond anything we could have hoped for.
The c-xection that I had been so worried about had been a walk in the park and, he didn't even need an incubator. The tube-feeding didn't upset me, I had done it all before with Alex and, little Peeper had already made his first attempts to nurse. He hadn't started making the little peep that gave him his nickname yet, that didn't come until he had gotten rid of the fluic in his lungs. Instead he was making a little crying noise every time he exhaled.
It was a bit disconcerting, cause it reminded me of when Alex had pneumonia as a baby, but they said that it was nothing to worry about, he was getting rid of it on his own. I was feeling too euphoric to be especially worried about anything. All I wanted was to savor every second with this wonderful little bundle of joy.
I could lay like that for hours, whith my little miracle sleeping on my chest and, though a year has passed I find that I feel much the same way; I want to treasure every moment with him. He's getting to be too big to sleep on my chest however. He still falls asleep that way, but we can't lay like that for very long anymore. More over, since that day about amonth ago when his dad fell asleep with him like that and, little Peeper almost fell off the bed, I'm a bit afraid that I'll fall asleep with him like that myself.
We're gonna have to start sleep-training here to avoid accidents I think. This baby still refuses point blank to sleep in his crib. I don't blame him. If I had the option to choose between sleeping in a lonely crib and, having someone who loved me more than anything in the world close enough to hold me every time I woke up, I'd pick the latter alternative as well.
In all honesty it's nice to have him sleeping here next to me and, it's more convenient too, since he wakes up so often in the night, but it would probably be good for all of us if he could take naps in his crib at least.
There's no hurry however. I just want to enjoy that he's healthy and, full of joy and laughter. I feel like I don't want to rush anything these days. He has been through so much already and, he'll grow up so quickly anyway.
So much has happened in this first year. During those first happy months We didn't exactly think that getting rid of tumors would be included in our baby's milestones, but he has showed more patience and courage than anyone could have asked for. His ability to laugh and smile at everyone through it all has pulled me through as well; how could I do less?
If I had a swedish crown for every smile and, a golden ten for every laughter he has bestowed upon us, i'd be in the top ten list of the world's richest people and, that doesn't even count all the smiles he has put in my heart. In that I'm probably richer than all of them.
I was going to post pictures here as well, but Alex is in the next room making a video with a selection of photos from his brother's first year; seriously, how many 14-year-olds will take the time to do that.
My heart is so full... So full of love for them both.
A rainbow baby is a baby born after the loss of another
The beauty of the rainbow does not negate the ravages of the storm. It doesn't mean the storm never happened or that we're not still dealing with its aftermath. What it means is that even though storm clouds still hover, something beautiful and full of light has appeared in the midst of the darkness, to provide color, energy and hope.
Friday, May 25, 2012
Friday, May 18, 2012
Chemo free and cancer free
And it's finally sinking in; our little miracle is cancer free!
We haven't had a single appointment this week. Not one! It's been a very long time since I could say that.
It's so wonderful not to have to view everyone around us as a potential threat to our little miracle's health.
We've even we've been to IKEA his week to get that high chair finally! Time to put away the bumbo seat!
That's actually something that's way overdue, but it has been impossible to go to places like that while little Peeper still received chemotherapy and, it's been just as impossible to get B to go pick out a high chair on his own.
It feel's a bit strange to have the freedom to go where ever I want to go, when ever I want to go again. Well, within limits of course, but at least we're now limited by ordinary things such as the assets in the bank, which as usual spells the word disaster around here, but when you're at the bottom you can only work your way up and, we might as well get use to the idea that we're not going to have much as long as we have to keep going to the hospital in Stockholm every month.
Next time we'll be going to the eye hospital instead of the cancer ward. I've been looking forward to that, but it's still a bit of a double edge sword, since it's also kind of nice to be in a place where we know our way around and, of course where there are people who care enough to take the time to come to our room and welcome us back.
Alex was still at the camp for siblings of siblings with cancer, so it's actually even better now that we've gotten the chance to prove to the ones who have been making ignorant comments about Alex taking care of his blind parents, that we can manage just fine without him.
One of the nurses who worked at the pediatric infection ward at the hospital here in our city has gotten a job at the oncology ward, so she was there to welcome us as well. She told me about that last time we had to stay in the hospital with little Peeper, but I had forgotten all about it. I'm not so sure she likes it over there, but it could of course just be that it takes a while to fit in. She's a nice person and I hope things will work out for her.
I almost wanna go back there just to see how she and Peeper's favorite nurse are doing. It feels kind of strange to hope that we'll never see them again.. At least not in that place.
On the other hand I've been dreading to come back every time and, the only reason I wasn't freaking out this time was because we were fairly certain that there wouldn't be any chemo this time. As certain that one can be in this world of constant apprehension and uncertainty that we entered the day the suspicion of cancer was raised.
It's not very likely that there would be new tumors while he still had the effects from the last chemotherapy treatment in his system. I know that it happens, but it's not something I want to think about and, though I also have days where I sit and look up facts about trilateral retinoblastoma and, the odds of getting other forms of cancer due to the gene mutation that caused the cancer in the first place, that sort of thing easily becomes a fear of the future that's threatening to swamp me.
Education is a curse sometimes and, so are worthless genes. People like me should never have children and, if I had known I wouldn't have had any. At least not the regular way.
For the most part however, I try to maintain a positive attitude. The fact that he has responded so well to the treatment thus far was, and is, a good sign and, right now I'm gonna let the fact that there's still no new tumors reinforce that there's hope... There is always hope...
The pediatric oncology ward is still a difficult place to be. There's no way to shield one's heart when there's so many suffering children everywhere and, I'm sure the eye hospital will be a less stressful environment for all of us. More over, we'll only have to be gone over a 24 hour period, so Alex won't have to miss school to come with us every time.
On another note I must say that the doctors sometimes don't seem very concerned with privacy. The eye doctor always communicates his last discoveries with us in the waiting room. That may of course be because he's only had positive news for us thus far, but on the other hand one of the oncologists was standing around in the corridor outside our room, discussing with a devastated couple that a bone marrow transplant would be the only option for their child now.
I went straight to the website and got an application to get on the donors list and, quite frankly, so should you. These children's lives depend on that people are willing to help, so please, please, take the time to consider becoming a bone marrow donor.
Find an international donor center in your country(Germany, Israel, Netherlands, Norway, Sweden, US(
Or if your country is not mentioned above:
Send an email to "questions@ndmp.org to find out how to become a bone marrow donor in your country.
Also, please remember that it's world retinoblastoma awareness week, so I would greatly appreciate if you could take a few minutes to read and share my post on the subject. Thank you for taking the time.
We haven't had a single appointment this week. Not one! It's been a very long time since I could say that.
It's so wonderful not to have to view everyone around us as a potential threat to our little miracle's health.
We've even we've been to IKEA his week to get that high chair finally! Time to put away the bumbo seat!
That's actually something that's way overdue, but it has been impossible to go to places like that while little Peeper still received chemotherapy and, it's been just as impossible to get B to go pick out a high chair on his own.
It feel's a bit strange to have the freedom to go where ever I want to go, when ever I want to go again. Well, within limits of course, but at least we're now limited by ordinary things such as the assets in the bank, which as usual spells the word disaster around here, but when you're at the bottom you can only work your way up and, we might as well get use to the idea that we're not going to have much as long as we have to keep going to the hospital in Stockholm every month.
Next time we'll be going to the eye hospital instead of the cancer ward. I've been looking forward to that, but it's still a bit of a double edge sword, since it's also kind of nice to be in a place where we know our way around and, of course where there are people who care enough to take the time to come to our room and welcome us back.
Alex was still at the camp for siblings of siblings with cancer, so it's actually even better now that we've gotten the chance to prove to the ones who have been making ignorant comments about Alex taking care of his blind parents, that we can manage just fine without him.
One of the nurses who worked at the pediatric infection ward at the hospital here in our city has gotten a job at the oncology ward, so she was there to welcome us as well. She told me about that last time we had to stay in the hospital with little Peeper, but I had forgotten all about it. I'm not so sure she likes it over there, but it could of course just be that it takes a while to fit in. She's a nice person and I hope things will work out for her.
I almost wanna go back there just to see how she and Peeper's favorite nurse are doing. It feels kind of strange to hope that we'll never see them again.. At least not in that place.
On the other hand I've been dreading to come back every time and, the only reason I wasn't freaking out this time was because we were fairly certain that there wouldn't be any chemo this time. As certain that one can be in this world of constant apprehension and uncertainty that we entered the day the suspicion of cancer was raised.
It's not very likely that there would be new tumors while he still had the effects from the last chemotherapy treatment in his system. I know that it happens, but it's not something I want to think about and, though I also have days where I sit and look up facts about trilateral retinoblastoma and, the odds of getting other forms of cancer due to the gene mutation that caused the cancer in the first place, that sort of thing easily becomes a fear of the future that's threatening to swamp me.
Education is a curse sometimes and, so are worthless genes. People like me should never have children and, if I had known I wouldn't have had any. At least not the regular way.
For the most part however, I try to maintain a positive attitude. The fact that he has responded so well to the treatment thus far was, and is, a good sign and, right now I'm gonna let the fact that there's still no new tumors reinforce that there's hope... There is always hope...
The pediatric oncology ward is still a difficult place to be. There's no way to shield one's heart when there's so many suffering children everywhere and, I'm sure the eye hospital will be a less stressful environment for all of us. More over, we'll only have to be gone over a 24 hour period, so Alex won't have to miss school to come with us every time.
On another note I must say that the doctors sometimes don't seem very concerned with privacy. The eye doctor always communicates his last discoveries with us in the waiting room. That may of course be because he's only had positive news for us thus far, but on the other hand one of the oncologists was standing around in the corridor outside our room, discussing with a devastated couple that a bone marrow transplant would be the only option for their child now.
I went straight to the website and got an application to get on the donors list and, quite frankly, so should you. These children's lives depend on that people are willing to help, so please, please, take the time to consider becoming a bone marrow donor.
Find an international donor center in your country(Germany, Israel, Netherlands, Norway, Sweden, US(
Or if your country is not mentioned above:
Send an email to "questions@ndmp.org to find out how to become a bone marrow donor in your country.
Also, please remember that it's world retinoblastoma awareness week, so I would greatly appreciate if you could take a few minutes to read and share my post on the subject. Thank you for taking the time.
Thursday, May 17, 2012
World Retinoblastoma awareness week
World Retinoblastoma Awareness Week is an opportunity for all organisations, families, survivors and treatment centres worldwide to join forces in raising awareness of this potentially lethal and blinding, but highly curable cancer.
Retinoblastoma is an aggressive childhood eye cancer that kills more than 7000 children every year.
The most common and easily recognised early sign of retinoblastoma is a white glow in the affected eye, like a cat's eye caught in headlights at night. "Leukocoria" is the medical term for this white eye reflex. The whiteness is usually only seen in dim light, or in photographs where a flash has been used.
This cancer is easy to diagnose, and treatment is very effective when tumours are found early.
In developed countries, survival is above 96%, but 95% of children experience moderate to severe vision loss or complete blindness due to late diagnosis.
Suffering is highest in developing countries where most affected children live and where 8 out of 10 children with retinoblastoma will die a slow and painful death.
The goal is of course that no children should have to lose their eye sight and, much less their lives when it could be totally preventable if everybody had access to correct information and adequat medical care.
In 2007, Daisy's Eye Cancer Fund and the UK Childhood Eye Cancer Trust held a joint week-long event to promote global awareness of white pupil, the most common early sign of this childhood cancer.
The Week was a great success, and the event has now become an annual campaign, running for seven days from the second Sunday in May.
The 2012 campaign focuses on raising awareness of white pupil and highlighting how children can live well even when their eye must be removed to save their life, as well as raising vital funds to improve care.
By being a part of these global efforts, you bring hope of earlier diagnosis and better care to children and their families worldwide. With a united voice around the world, the message is so much stronger. You now have a chance to help by sharing this information in your workplace, school, place of worship, community group and, of course your social networks, to help bring awareness to as many people as possible.
Statistics show that parents hav often seen the white pupil and wondered about it for several months before their child is diagnosed with the retinoblastoma, but with your help the next mother or father confronted with this sign of cancer may be aware of that it's crucial to seek help for their child as soon as possible.
"Childhood eye cancer is 3 words, it should never become a sentence."
Retinoblastoma is an aggressive childhood eye cancer that kills more than 7000 children every year.
The most common and easily recognised early sign of retinoblastoma is a white glow in the affected eye, like a cat's eye caught in headlights at night. "Leukocoria" is the medical term for this white eye reflex. The whiteness is usually only seen in dim light, or in photographs where a flash has been used.
This cancer is easy to diagnose, and treatment is very effective when tumours are found early.
In developed countries, survival is above 96%, but 95% of children experience moderate to severe vision loss or complete blindness due to late diagnosis.
Suffering is highest in developing countries where most affected children live and where 8 out of 10 children with retinoblastoma will die a slow and painful death.
The goal is of course that no children should have to lose their eye sight and, much less their lives when it could be totally preventable if everybody had access to correct information and adequat medical care.
In 2007, Daisy's Eye Cancer Fund and the UK Childhood Eye Cancer Trust held a joint week-long event to promote global awareness of white pupil, the most common early sign of this childhood cancer.
The Week was a great success, and the event has now become an annual campaign, running for seven days from the second Sunday in May.
The 2012 campaign focuses on raising awareness of white pupil and highlighting how children can live well even when their eye must be removed to save their life, as well as raising vital funds to improve care.
By being a part of these global efforts, you bring hope of earlier diagnosis and better care to children and their families worldwide. With a united voice around the world, the message is so much stronger. You now have a chance to help by sharing this information in your workplace, school, place of worship, community group and, of course your social networks, to help bring awareness to as many people as possible.
Statistics show that parents hav often seen the white pupil and wondered about it for several months before their child is diagnosed with the retinoblastoma, but with your help the next mother or father confronted with this sign of cancer may be aware of that it's crucial to seek help for their child as soon as possible.
"Childhood eye cancer is 3 words, it should never become a sentence."
Thursday, May 10, 2012
The record that noone wants to hold
As I may have mentioned several times before, It is always more or less difficult to obtain the blood needed for little peeper's tests, but today just goes above and beyond what a little baby should have to endure.
7 times!
And no, I'm not kidding...
I wish i was.
My brave little miracle doesn't even cry. He'll just tense up his whole little body for a few seconds and, make this little sound in his throat. Almost as though he's trying to clear it and, then he just goes on to dividing his time between playing with a toy and, trying to get involved in what the nurse is doing. He is so quick now that It's a wunder that he hasn't been able to take the tube from her or, kick it out of her hand yet.
She tried once. And didn't get enough blood...
Twice. And could barely get what she needed, but finally decided that it would have to do...
It always gets a bit messy, since it's hard to get him to sit absolutely still, so she cleaned off his foot and put on a band aid as usual.
And then She saw a clot in the tube...
So we started over...
Time to try the other foot...
At the third atempt she managed to get him to part with enough drops to fill the tubes up in a desent amount of time, and everything looked fine. So she cleaned him up again and, put on another band aid...
We discussed the option of going home and wait for the results, but decided that we'd stay and make sure that the lab wouldn't have any complaints.
After about 50 minutes she came back with the cart where she keeps all the necessary equipment for blood work, so it was a good thing that we didn't leave, cause we would have had to turn right around and come back.
I do appreciate the extra opportunities to exercise, but another 5 km through poring rain was just not on my wishlist for the day.
Again, there had been a clot in the tube, so this time, she gave it a go with his big tow, to see if she could get the blood to flow a little bit quicker, even though that one is generally less cooperative than the others. Though it of course should be the other way around and, it should bleed more easily.
Nothing makes sense when it comes to our little guy and blood work however. It should be easy as pie to obtain a blood sample from him most of the time, since his platelet count often is very low due to the chemoherapy treatments, but it's just never easy. Except when the nurse has already gotten as much as she needs; then the blood will flow ever so willingly.
This time was of course no exception to the rule and, it took another 3 attempts to gather enough drops for round number 3 of tests.
Our little peeper just sat there as patient as ever. Until he had finally had enough shortly after the 6th time the needle punctured the skin of his poor little foot and, let her know with an earsplitting yell that he was mad, hurting, sad, and tired of it all.
And all I could do was to let him know that he was right...
That he could yell as much as he wanted to.
That I was proud of him for being so super brave, but enough is enough.
The nurse was apologetic and, said that she understood him too. I could tell that she felt really bad, even though it wasn't her fault.
She is the one who's responsable for little Peeper, so she usually does the tests. I honestly thought she was kind of weird at first. But she was just weirded out by the fact that I'm blind.
It's a common disease.
She got over it pretty quickly though and, she's really good with little Peeper. He still smiles evry time he sees her, even though she always has to hurt him.
I almost felt sorry for her. There was nothing she could have done differently today.
It's another thing with a venous test. in that case a failure could be due to a mistake, but with capillary tests, there's not so much one can do wrong.
Little peeper kept crying and, trying to turn around to hug me and, my heart was breaking for him.
It made me feel like the first time they ever pricked his little foot, when he was just a few days old. It was the same that time, it took them forever to get enough blood for the test and, he was crying his eyes out. All I wanted to do was to pick him up and hold him and, I knew that was all he wanted as well.
And just like that time, Both his mom's and, his dad's eyes were swimming with tears as well.
It felt like an eternity had passed when the nurse finally started to tidy his little foot up. And, another eon passed before she had put the band aid on.
Again the sample looked fine and, surely everything would be alright this time.
Back to wating...
Another 45 minutes or so passed and, then she came back again. Without the cart this time, something which B commented on and, said must be a good sign. But "no", unfortunately all it meant was that she had asked a collegue to give it a shot, as she didn't want to try again.
Yet again, there had been a clot in the tube... but they now thought that they had finally figured out why.
It turned out that there was something wrong with the blood specimen tubes. Apparently they contain a powder anticoagulant and, this powder needs to be kept at the bottom of the tube, to avoid that it spills out when one opens it up to use it for a test. This means of course that one has to keep them in a place where they can be in an upright possition all the time. But some inteligent soul had probably had them laying down. There had been a similar insident a few weeks back...
Nothing to do but take our little miracle on my lap again and, let them try a 7th time.
I thought he'd get upset right away this time. As soon as he realized what was gonna happen, but again he endured it without so much as a peep and, at least she only had to try once.
I think that if I hadn't known her I would have been ready to let someone's head roll by that point regardless, but there's really no way to get mad at someone who takes the time to call you up at 5 o'clock after everyone has gone home, just because they wanted to apologize for forgetting about bringing you coffee when you were in for tests earlier that day.
Seriously, who does that?
The day time ward was crazy that day and, they were up to their necks in work. I can't even understand how she had the time to remember that she had forgotten to bring it to us, much less felt bad enough about it to call me and apologize...
The explanation with the tubes seemed to be correct, cause this time everything worked out the way it was suppose to and, the good thing about this whole ordeal is that his results are great. Hemoglobine 119, White blood cell count 7 point something, Neutrophils 2, something and, platelets around 300. Sorry, but that's what you get when they give the numbers to B; he only pays attention to the first one, decides that it's fine and forgets about the rest...
Oh yeh, and there's one more good thing; Peeper's new little favorite dog, who could come home with us from the day time ward, as a reward for bravery.
7 times!
And no, I'm not kidding...
I wish i was.
My brave little miracle doesn't even cry. He'll just tense up his whole little body for a few seconds and, make this little sound in his throat. Almost as though he's trying to clear it and, then he just goes on to dividing his time between playing with a toy and, trying to get involved in what the nurse is doing. He is so quick now that It's a wunder that he hasn't been able to take the tube from her or, kick it out of her hand yet.
She tried once. And didn't get enough blood...
Twice. And could barely get what she needed, but finally decided that it would have to do...
It always gets a bit messy, since it's hard to get him to sit absolutely still, so she cleaned off his foot and put on a band aid as usual.
And then She saw a clot in the tube...
So we started over...
Time to try the other foot...
At the third atempt she managed to get him to part with enough drops to fill the tubes up in a desent amount of time, and everything looked fine. So she cleaned him up again and, put on another band aid...
We discussed the option of going home and wait for the results, but decided that we'd stay and make sure that the lab wouldn't have any complaints.
After about 50 minutes she came back with the cart where she keeps all the necessary equipment for blood work, so it was a good thing that we didn't leave, cause we would have had to turn right around and come back.
I do appreciate the extra opportunities to exercise, but another 5 km through poring rain was just not on my wishlist for the day.
Again, there had been a clot in the tube, so this time, she gave it a go with his big tow, to see if she could get the blood to flow a little bit quicker, even though that one is generally less cooperative than the others. Though it of course should be the other way around and, it should bleed more easily.
Nothing makes sense when it comes to our little guy and blood work however. It should be easy as pie to obtain a blood sample from him most of the time, since his platelet count often is very low due to the chemoherapy treatments, but it's just never easy. Except when the nurse has already gotten as much as she needs; then the blood will flow ever so willingly.
This time was of course no exception to the rule and, it took another 3 attempts to gather enough drops for round number 3 of tests.
Our little peeper just sat there as patient as ever. Until he had finally had enough shortly after the 6th time the needle punctured the skin of his poor little foot and, let her know with an earsplitting yell that he was mad, hurting, sad, and tired of it all.
And all I could do was to let him know that he was right...
That he could yell as much as he wanted to.
That I was proud of him for being so super brave, but enough is enough.
The nurse was apologetic and, said that she understood him too. I could tell that she felt really bad, even though it wasn't her fault.
She is the one who's responsable for little Peeper, so she usually does the tests. I honestly thought she was kind of weird at first. But she was just weirded out by the fact that I'm blind.
It's a common disease.
She got over it pretty quickly though and, she's really good with little Peeper. He still smiles evry time he sees her, even though she always has to hurt him.
I almost felt sorry for her. There was nothing she could have done differently today.
It's another thing with a venous test. in that case a failure could be due to a mistake, but with capillary tests, there's not so much one can do wrong.
Little peeper kept crying and, trying to turn around to hug me and, my heart was breaking for him.
It made me feel like the first time they ever pricked his little foot, when he was just a few days old. It was the same that time, it took them forever to get enough blood for the test and, he was crying his eyes out. All I wanted to do was to pick him up and hold him and, I knew that was all he wanted as well.
And just like that time, Both his mom's and, his dad's eyes were swimming with tears as well.
It felt like an eternity had passed when the nurse finally started to tidy his little foot up. And, another eon passed before she had put the band aid on.
Again the sample looked fine and, surely everything would be alright this time.
Back to wating...
Another 45 minutes or so passed and, then she came back again. Without the cart this time, something which B commented on and, said must be a good sign. But "no", unfortunately all it meant was that she had asked a collegue to give it a shot, as she didn't want to try again.
Yet again, there had been a clot in the tube... but they now thought that they had finally figured out why.
It turned out that there was something wrong with the blood specimen tubes. Apparently they contain a powder anticoagulant and, this powder needs to be kept at the bottom of the tube, to avoid that it spills out when one opens it up to use it for a test. This means of course that one has to keep them in a place where they can be in an upright possition all the time. But some inteligent soul had probably had them laying down. There had been a similar insident a few weeks back...
Nothing to do but take our little miracle on my lap again and, let them try a 7th time.
I thought he'd get upset right away this time. As soon as he realized what was gonna happen, but again he endured it without so much as a peep and, at least she only had to try once.
I think that if I hadn't known her I would have been ready to let someone's head roll by that point regardless, but there's really no way to get mad at someone who takes the time to call you up at 5 o'clock after everyone has gone home, just because they wanted to apologize for forgetting about bringing you coffee when you were in for tests earlier that day.
Seriously, who does that?
The day time ward was crazy that day and, they were up to their necks in work. I can't even understand how she had the time to remember that she had forgotten to bring it to us, much less felt bad enough about it to call me and apologize...
The explanation with the tubes seemed to be correct, cause this time everything worked out the way it was suppose to and, the good thing about this whole ordeal is that his results are great. Hemoglobine 119, White blood cell count 7 point something, Neutrophils 2, something and, platelets around 300. Sorry, but that's what you get when they give the numbers to B; he only pays attention to the first one, decides that it's fine and forgets about the rest...
Oh yeh, and there's one more good thing; Peeper's new little favorite dog, who could come home with us from the day time ward, as a reward for bravery.
Tuesday, May 8, 2012
Support and, hope for children with cancer and their families
The house is strangely silent and, empty again...
No one is playing the guitar, nagging about computer time, turning up the volume of the tv too loud, staying up too late, or slamming the door to his room shut.
And no wonderfully contagious laughter is heard along with that adorable baby giggle.
Alex went to a camp with his class mates last week and, this week he's at a camp for siblings of children suffering from cancer.
There'll be various activities and, a great opportunity to connect with others going through a similar ordeal. , Along with lectures about different types of childhood cancers and, schoolwork. All expenses payed for by the Swedish Childhood Cancer Foundation.
I miss him, but I do believe that this will be a great learning experience for him and, a chance to have fun along with kids his own age, who understand why it still may be hard to laugh sometimes.
All this have been tremendously hard on me and B, but I can't even begin to imagine how Alex must feel, spending hour after hour in the pediatric oncology ward, where the air is thick with anxiety, when he should be in school, or hanging out with his friends.
It can't be easy to be 14 and, locked up in a hospital room, where he has to watch his brother get hooked up to machines all day long and, then endlessly helping out by reading the message flashing on the screen of the IV-pump, pushing the button to silent the alarm or, pushing another button to call the nurses to let them know that there's an issue with the IV, again.
And if it's not that, then he's trying to help out with keeping his brother entertained when he feels sick, or preoccupied with something other than those thin, ever so interesting lines, where one poison after another slowly is dripping into his little baby body, to fight the greater poison lurking within.
The Swedish Childhood Cancer Foundation are helping out with entertainment as well. Every day there's different activities for the children: clowns are coming to get them to laugh. There's a music group where someone will play the guitar and sing with them and, there's a art and creativity group, where they can paint and draw and have fun with colors.
There is also a person appointed by the Swedish childhood cancer foundation, who's job is to support the siblings. She has been taking Alex and he other kids out for treats, such as an afternoon at the movies, a bite to eat at McDonald's, a sky view tour on the outside of The Globe and, she's also been trying to keep them preoccupied while at the pediatric oncology ward, with baking and the like.
It has been invaluable and, I'm ever so thankful for every time that Alex has gotten a moments break from what's been happening around him and, to his baby brother.
Still, every time he leaves our room to get on the computer they keep in the kitchen, he's surrounded by sick children, likewise hooked up to machines, but with the strength and, energy to laugh and play anyway. And, by parents with cheerful, supportive voices, but with broken hearts and a haunted look in their eyes.
They have reason to worry...
For even though the treatment of cancer in children and in teenagers has improved considerably over the last decade, especially in the subsequent quality of life of these children after treatment. Some children may still experience permanent adverse effects.
Cranial radiation in small children may damage the development of the brain, and cytostatic agents result in adverse effects influencing growth, fertility, hearing loss, and organ failure. However, one must remember that failing to give treatment to children with cancer is the most “serious” side-effect of all.
Children are the most admirable little fighters in the world. If you can fight like a kid, chances are that you'll be well on your way to achieve your goals. Even when they're sick beyond comprehension , they'll be crying one minute and, laughing and playing the next.
And yet, 25 % of the children here will never make it to adulthood...
It is a heavy notion to bear...
Still there's so much hope in the gigantic leaps forward that survival rates have taken in this country thanks to research during the last 30 years. A research, which to 90 % is finance by the Swedish Childhood Cancer Foundation.
Cancer in children is no longer a death sentence. Instead, since 1995, three out of four Swedish children with cancer survive. The partnership between research and clinical work has resulted in this impressive achievement. The future ambition of the Swedish Childhood Cancer Foundation is of course the same as the one of their families, that all children suffering from cancer will be cured.
Most individuals agree that being healthy is very important. It is hard to understand why children should fall ill with a fatal disease, and the thought of our very own children or grandchildren suffering is almost impossible to bear. Children should not fall prey to life-threatening diseases, it is unfair and senseless.
This view is precisely why a lot of individuals, as well as associations and companies, pledge their time and/or money for this cause. All activities carried out by the Swedish Childhood Cancer Foundation are financed by means of donations and legacies and, every single one of you, no matter how great or small the contribution, have my deepest, innermost heartfelt gratitude.
No one is playing the guitar, nagging about computer time, turning up the volume of the tv too loud, staying up too late, or slamming the door to his room shut.
And no wonderfully contagious laughter is heard along with that adorable baby giggle.
Alex went to a camp with his class mates last week and, this week he's at a camp for siblings of children suffering from cancer.
There'll be various activities and, a great opportunity to connect with others going through a similar ordeal. , Along with lectures about different types of childhood cancers and, schoolwork. All expenses payed for by the Swedish Childhood Cancer Foundation.
I miss him, but I do believe that this will be a great learning experience for him and, a chance to have fun along with kids his own age, who understand why it still may be hard to laugh sometimes.
All this have been tremendously hard on me and B, but I can't even begin to imagine how Alex must feel, spending hour after hour in the pediatric oncology ward, where the air is thick with anxiety, when he should be in school, or hanging out with his friends.
It can't be easy to be 14 and, locked up in a hospital room, where he has to watch his brother get hooked up to machines all day long and, then endlessly helping out by reading the message flashing on the screen of the IV-pump, pushing the button to silent the alarm or, pushing another button to call the nurses to let them know that there's an issue with the IV, again.
And if it's not that, then he's trying to help out with keeping his brother entertained when he feels sick, or preoccupied with something other than those thin, ever so interesting lines, where one poison after another slowly is dripping into his little baby body, to fight the greater poison lurking within.
The Swedish Childhood Cancer Foundation are helping out with entertainment as well. Every day there's different activities for the children: clowns are coming to get them to laugh. There's a music group where someone will play the guitar and sing with them and, there's a art and creativity group, where they can paint and draw and have fun with colors.
There is also a person appointed by the Swedish childhood cancer foundation, who's job is to support the siblings. She has been taking Alex and he other kids out for treats, such as an afternoon at the movies, a bite to eat at McDonald's, a sky view tour on the outside of The Globe and, she's also been trying to keep them preoccupied while at the pediatric oncology ward, with baking and the like.
It has been invaluable and, I'm ever so thankful for every time that Alex has gotten a moments break from what's been happening around him and, to his baby brother.
Still, every time he leaves our room to get on the computer they keep in the kitchen, he's surrounded by sick children, likewise hooked up to machines, but with the strength and, energy to laugh and play anyway. And, by parents with cheerful, supportive voices, but with broken hearts and a haunted look in their eyes.
They have reason to worry...
For even though the treatment of cancer in children and in teenagers has improved considerably over the last decade, especially in the subsequent quality of life of these children after treatment. Some children may still experience permanent adverse effects.
Cranial radiation in small children may damage the development of the brain, and cytostatic agents result in adverse effects influencing growth, fertility, hearing loss, and organ failure. However, one must remember that failing to give treatment to children with cancer is the most “serious” side-effect of all.
Children are the most admirable little fighters in the world. If you can fight like a kid, chances are that you'll be well on your way to achieve your goals. Even when they're sick beyond comprehension , they'll be crying one minute and, laughing and playing the next.
And yet, 25 % of the children here will never make it to adulthood...
It is a heavy notion to bear...
Still there's so much hope in the gigantic leaps forward that survival rates have taken in this country thanks to research during the last 30 years. A research, which to 90 % is finance by the Swedish Childhood Cancer Foundation.
Cancer in children is no longer a death sentence. Instead, since 1995, three out of four Swedish children with cancer survive. The partnership between research and clinical work has resulted in this impressive achievement. The future ambition of the Swedish Childhood Cancer Foundation is of course the same as the one of their families, that all children suffering from cancer will be cured.
Most individuals agree that being healthy is very important. It is hard to understand why children should fall ill with a fatal disease, and the thought of our very own children or grandchildren suffering is almost impossible to bear. Children should not fall prey to life-threatening diseases, it is unfair and senseless.
This view is precisely why a lot of individuals, as well as associations and companies, pledge their time and/or money for this cause. All activities carried out by the Swedish Childhood Cancer Foundation are financed by means of donations and legacies and, every single one of you, no matter how great or small the contribution, have my deepest, innermost heartfelt gratitude.
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