Hey to you all out there!!
My name is Marlene, and I'm a mother to this boy and a girl i will tell you about.
His name is Julian and he is 7 years old. :) And he is the most sweet and kindest little boy i know. He has never done any harm to anyone, speaks very nice and kind to others, he loves his friends so much. And he has so much love for his family.
Now I will tell the story that happend just for a little while ago, like 3 mounds ago. Its shorten in a bit ofcourse, cause if i did tell you the hole story it would be extremly much for you to read.
I hope also that people will showe respect after this and let us have a peacefull time. <3
Julian was getting sick, like very sick. He lost his energy, and had this extremly pain in his head. And after some days he was starting to trow up, alot. We took him to the docktor and they didnt know what was going on because everything was okey on his blood tests and he responded ok to all the other things they tested him on also.
( one year ago on this same time of year he was also sick like this. And that time it last for like 5 weeks and one day he was back to him self)
So we tough maybe it was because of stress, because he started a new school with many new people, and we had just been moving to a new place so it was alot that was new for him.
So we waited for some more answers from the doctor while we looked after him at home. He wanted to go to school one day he was a little better so we tried that, but after 2 hours the school called and told that he was crying because his head hurts to much. The day after that he was so tired and he had not been eating any food in like two days. He tried to eat a icecream. But he trowed up 3 times while he stilled havent finished the icecream, so that was it. His father called the doctor again, but another place, told the long story of everything and they said that we have to come right away. After they had takeing picture's of his head they came in to his father, that was with him on all of this and sayd that they had to rush to another hospital called Rikshospitalet. Why? Well because they found a tumor in his head and he had to get surgary really fast to get it out. He remember that everything STOPED for a moment. I called him when he was on his way in the ambulanse and his words when he told me what was going on... It was like someone kicked my knee's and i droped down before i really understand what he was saying. Our son, had a braintumor? What..
Isabella ( his sister ho is 5years ) was safe with a friend. And you will hear more about her story also after a while reading here.
So all i was thinking about was to get to the hospital to them. No one of us could belive it, it was the worst message a parent can get..
When i got there it was just some minutes untill they took him in to operation. It was a big, and a long operation. We have never been more scared then now. They also took alot of test during that time, and when it was over we got information that in 2 weeks we will know more about this type of canser.
The questions we had was: Is it a good one? Is it a bad one? Will he make it? Will his life be this short? AND MANY MORE OFCOURSE!!
The next days its still a little blur because it was so many doctors and nurses that talked to us with new informasjon every time.
He was laying on observasjon for 2 weeks.
They had to lay him in narkose many times because of everything they had to prepare for him. He got a CVK out from his chest, its for bloodsempels and medicatoin. It was so painfull to see he go trough that. And in this period he got this ugly cough, and made him trow up again... Again!?
They took COVID 19 tests from us all, but no..
Then some new picture from his head.. There could they see a black mark, and they was afraid that the canser already was back - in that same conversation we also got the news that this was a very bad type of canser. Its called : Ependymom . And its two kind under this name, one that has a good chance to go away - and the other one is a more agressiv type that makes it diffucult and has more chances to die from. He was in the bad one.
After that i dondt remember that much in the conversation.. The tears was just taking over compleatly.
For almost four weeks our lives was in the hospital.
And now we got a little break during the easter. It was extremly good to come home for some days. We brought the "hole" family home for some days. That meening his sister and brothers.
It was nice, but also exhausting because in this time our minds have just been on everything thats going on, how to make everything as good as possible...for Julian, but also the other siblings..
While we was home we got new appointments to the hospital, so it was alot of driving there and back home again. He had to take much test's and more pictures. He needed to make a mask for the time that we now have in front of us, because he needs radiation therapy for 6 weeks. He had to clean this CVK he had and we as parents needed to talk more with the doctors. ( In one month is was maybe 10 days we got a break from the long drives and the stress around the appointments.)
Julian was still very up and down - meaning he threw up may times during the days.. still.. It wasnt a moment that we could be 100% calm and relax around his situastion. And its very difficult to find words thats explaining how we felt.
I rembember i looked at some pictures hanging on our wall. It were a picture of Julian and Isabella, right after Isabella was born. She was laying on his lap and he was looking down on her. You could see how proud he was to be a big brother. <3 My eyes just filled with tears right away. My emotoins was taking over so bad. How did this happend? God we really need extra hope in this moments..
The need you feel to be sure that this is going to be okey, its so intens. And it are nobody who can say for sure that everything will be 100% okey. That is the worst..
And maybe you can understand, maybe not. Thats okey.. But our days where like this, still are.. Extremly ups and downs. Tears coming without any warning. Thoughts running in our heads all the time.. Because all a parent wants are being sure your kids are fine and dondt having any pain. In every ways!! Right?
Then it came..
AND NOW MORE MADNESS ON TOP OF ALL:
Our little girl Isabella i told about in the beginning also had appointment in the same hospital that Julian. In the same time of period.
( little of her story comes her ) She stardet to have alot of pain in her leggs in about 1,5 years ago. So painfull that she could not walk or stand on her own feets. We have been to so many doctors, tried fysioterapy. Taking alot of bloodtests and been waiting for someone to take us seriusly around this.
She needed to go in for narkose and they had to drain some "water" out of the legs and her knees. While they did they also put some medication inside to make it better. She got the diagnos children arthritis.
This last period of time Julian, Isabella, father and me has been trying to make as much time possible together. In this days now, we have a apartment thats from the children's cancer association - just some meters from the hospital. Because Julian needs so take 6 weeks with radiation therapy. After that he will have 4 weeks with time of anything around the hospital before he has to have 14 weeks with chemotherapy.
Its really taking on everyone.. And we really want to do this time the best possible for Julian and also Isabella. But if we dondt get any help from some place we cant do that. Because the money situasion has taking on so bad. All the money for driving, not been able to work, all the extra small things on top of this.
We didnt have alot from before and now its even more diffucult to make it go around at all.
If it is anyone who can help us making a good time to come this next months, for our kids...we will be so grateful.
Living in a bubble and not knowing whats going to happend with our boy is so scary, and we want to give him the most memorable time he possible can get.
So if YOU can give us anything at all, you will be helping us so much on this way we have to go in to..
The money will give us possibility to for exemple:
* Take them to our camping during the 4 weeks we will have a "break" from everything.
* Buy some new toys we know they want. Special for Julian. He has been wanted a playstation 5 for a time now, and it would be super awesome to give him that specially this time when its so much time we use in the apartment and must be carefull that he dondt get more sick while he is in radiation teraphy. ( but its important that Isabella dondt feel she's forgoten in all of this )
* Eat some other places other then hospital or the apartment all the time.
* Give Julian the chance to go to Tusenfryd, its a place they have alot of carousels. (this year he is big enough to take almost them all)
* And most of all, have the chance to say yes if he askes for someting he wants there and then.
Because right now we dondt have that.. :( and thats very sad and painfull to have to say no - also when he askes for food from for exemple mc donalds. Its been so much expenditure in this period, so thats why i feel our only hope is to ask you people if anyone can help us out.
Forever gratefull mother and father. <3
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