An emotional roller coaster

I wanted to write to you all with an update on how Linnea is doing.

The girls have now been in Monterrey since early april, and what was supposed to be a simple one-week treatment have now lasted over a month because of the radiation therapy.
And since the doctors want us to start a couple of immunotherapies they will continue to be in Monterrey for another month. Logistically it is just not possible to travel back and forwards with blood being drawn, cultivated in the lab and then treatment the following week.

The ones having it the hardest is Linnea and Kristian. They miss each other terribly with Kristian crying at night telling me how much he misses his little sister, they really are the best of friends and have never ever fought with each other. They support each other and always helps one another. 
With that being said its easy to understand why me and Kristian will be flying to Mexico next week to be together as a family for the coming month and for the coming treatments. We can't wait to see them!

At this point she has now completed more than half of the planned radiation therapy and last week we did a new PET scan of the spinal tumors that are being radiated.

We are so happy to say that two of the three tumors in the spine are gone after just two weeks of low dosage radiation.
So our fantastic radiation specialist Dr Diaz immediatelly adjusted and re-did the radiation plans, and this week he has been focusing on the third spinal tumor with 10x the radiation dosage.
Since the other two responded so well to the radiation he is confident about treating the third.

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This whole journey is an emotional roller coaster for us, last week we also discovered that the original meningosarcoma in the brain (note: Not the DIPG tumor) had increased a little in activity and size.
So after those results, Dr Diaz has now also included stronger radiation next week for treating that spot as well before it grows more in size. Since its likely the root of the spinal tumors he is equally positive about treating that one as well. Unfortunately this has meant some more expenses with extending the radiation treatment and also casting a new mask for next week.

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Seeing a picture like this of my little girl over in Monterrey, on the other side of the world is gut wrenching to me as a father, I try to console myself with Linnea not being afaraid of the radiation, she's used to it and has even decided herself early on that she is doing the radiation without sedation (no fasting, no smelly gas for sedation, and she gets out of the hospital faster every day).
She's doing her part, now we just have to do ours.

It's close to one year after Linnea finished her immunotherapy and the immunologist and the doctors want's us to do a couple of more immunotherapies to remind the immune system of how Linnea's tumor looks, and to keep treating aggresivelly to not let this tumor gain an upper hand again.
We are very glad for this as it is something we've been planning and wanting as well, however it further increases our financial load. 

With the radiation therapy and two new immunotherapy treatments, we are now looking at 50.000USD extra, 20.000$ for radiation and 30.000$ for immunotherapies. In total approximately 437 000 SEK extra. It is a stagering amount to say the least, and I have to confess it keeps me up at night...

So. Here I am now. A desperate father asking you all for help: 
- Please help spreading the word. We've gotten to this point because so many of you have contributed, but money runs out fast.
If this word gets to new people, touches new hearts we can share the burden. Linnea is everything for us. Let's do it för her!

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Kristoffer Nordström
Madame Curie - You were so right

Just 3 days after the spinal tumors were detected, Linnea and I were in a hospital and preparing for the radiation.
An MRI and CT were made, the following day the CT was repeated in situ, in other words when Linnea was in the radiation machine.
A fixation device was made for her, a casting of her torso that is applied every time she receives radiation to ensure that Linnea is in exactly the same position. I call it for the knight armour and it hurts my heart every time I see how hers is so small compared to others belonging to adults.

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Right now, Linnea will have radiation 15 times, after which a new PET scan with methionine 11 will be made to assess the effect, and after that, doctors here will determine how many radiation sessions more are needed.

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We are so grateful that the radiation could be arranged so fast. Our doctors in Sweden were also prepared to get started as quickly as possible, but it would take more weeks and the intraarterial chemotherapy would have had to be postponed, and we want to avoid that at all costs.

Now Linnea and I go to the hospital every morning. Before that, Linnea chooses which of her stuffed animals that is going to accompany her for the day.

Then we enter the hall where the radiation machine is located. The machine is actually Swedish, "Versa HD" manufactured by Elekta, so I'm joking with the staff and saying it feels like home sweet home.

After that Linnea is sedated, her armor is laid on her and she is radiated.
Everything goes very fast and Linnea says "Bye" to all the staff.

The first time I was scared by the radiation, but this time it does not feel as scary. Right now, I am reading Marie Curie's biography and she has said "Nothing in life is to be feared, it is only to be understood. Now is the time to understand more, so we may fear less."
This time I know more, I do not feel so scared. So Marie Curie was right. Again.

After the radiation we do something with Linnea: the arcade, the toy store, the trampoline park.
What makes us a little bit calmer now is that she is really good, has energy, shows no symptoms.
Yesterday the radiologist wondered how Linnea is after treatment.

Radiologist: - Does she have a headache? Is she tired?
I: - Oh no. Yesterday we were in the trampoline park where she jumped for an hour.

All the staff in the room laughed, it's so nice she likes to do things that other six-year-olds love.

It was a shocking message that she had to be radiated, that she and I have to stay in Monterrey for maybe 5 weeks instead of 1 week, to miss her brother's birthday, to miss the talent show at her school, that she's not together with her classmates to learn the numbers 8,9 and 10.
But our closest goal now is to see her on her first graduation from school in a white dress, and to make sure she starts first class come fall.

And by the way, another tooth is loose!

Kristoffer Nordström
Some mixed news, mostly positive, but some less positive as well

Last week, Linnea received a new PET scan. Her last one was done in October last year and already then showed low activity in her tumor.
A PET scan is a high-resolution scan of the body which has a higher chance of seeing cancer cells and also to measure the acitvity in those cancer cells.
The PET scan this time had some fantastic news that we enjoyed for a few hours, but there was some less positive news as well that we found out later.

The great news are that the PET scan showed that the aggressive DIPG tumor in PONS continued to decline in activity and showed "continued poor metabolic activity" according to the radiologist and continues to respond to the treatment.
This is perfectly in line with what we see in the MRIs, and also how Linnea is feeling. She's happy, active, and just looks so much healthier. 
And her apetite... it's back again!

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When she woke up after this intra-arterial treatment it was the first time since last year that her eye didn't squint even a little.

The activity was measured with slightly different markers, but briefly, activity had decreased by 33% (!) since last October when it was already very low.
It is not inactive, but we are close now and as a result, Linnea is on top and feeling great.
We keep that tumor not only under control, but it continues to respond to the treatment.

On the other hand, our doctors discovered a new spot outside PONS. They have looked at it and confirmed that this is located on the outside of the brain and is another type of tumor (a so-called meningosarcoma/meningioma).
These tumors can occur after radiation therapy and are usually benign in nature. Also in our case it's a huge benefit that it's outside of the brain and not on the inside making it much easier to treat.

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Linnea loves the pool in Mexico

The PET scan also showed an active area in the spine of Linnea and we quickly changed the planned MRI of the head to instead scan the spine. It showed that Linnea has tumors along the spinal column, and having gone initially from the worst case scenario where for one hour we thought it was the DIPG tumor that had wandered down the spine, it became apparent that when our doctor treated these new tumors intra-arterially and looked closer at the MRI images that the tumors were not on the inside of the spine but instead on the outside. This is a drastic difference and as strange as it sounds we were relieved.
Most likely, it is the before mentioned meningosarcoma that has wandered down the spine on the outside.

The doctors wanted us to start radiation therapy immediately on Linnea's spine, and they immediatelly injected gold nanoparticles to increase the efficiency of radiation.
This is something that is not routine in normal radiation therapy, but it has been done in a lot of research projects around the world, and it increases the efficiency of the radiation by ~20% without having to increase the dosage of the radiation.
We consulted with our oncologists at home in Sweden because we wanted to see if it could be done at home, we were told that a careful estimat were that it would take 2-3 weeks at the best before we could start radiation at home, more likely even later than that. 

In Monterrey they can provide the radiation therapy within 2-3 days, much easier to collaborate between the treating doctors and specialist there. But of course it comes at a cost and now Linneas Spring Fundraiser is more important than ever.
So we decided on radiation in Mexico, it meant that Giedre and Linnea met the radiation specialist two days after the news, and we have a plan, Linnea will start radiation therapy in Monterrey for 4-7 weeks.

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The forecast looks good, meningosarcoma responds well to radiation, and Linnea will in a few hours begin her first radiation therapy session. 
How lucky are we to be able to be in Monterrey, where we have such specialist, and also the possibility to start radiation therapy within a couple of days after diagnosis.

Because Linnea got gold nanoparticles injected by our fantastic doctors in Monterrey, and she also continues to go through intra-arterial chemotherapy, the doctor who is the radiation specialist thought that it would be enough with 4 weeks. 
We will make a new PET scan in 3 months to see the results.

But the prognosis looks good. And most importantly, Linnea can maintain her schedule and treat the tumor in the PONS intra-arterially, something that is extremely important to keep treating.

This is obviously a speed bump along this road for us, and we've been down about the news for a few hours, Linnea and Giedre must stay in Monterrey for at least another 4-5 weeks, and big brother Kristian and me dad at home in Sweden. 
But at the same time, this should be a manageable scenario. So far we have had no incidents in the treatment of Linnea for over 16 months, and if we have to endure one, well this one is one we will fight and manage.

We can get started fast with the therapy, time is of the most importance with cancer, and we have to pay for it ourselves, its just under 20,000USD, but we can start right away.

And in all of this, let's remember, Linnea is feeling marvelous, no sign whatsoever of having the DIPG tumor, and the DIPG tumor is of very low activity and responding to the treatment.
Once we get rid of the meningosarcoma, which we will, then we are left with a DIPG tumor that is controlled and almost inactive.
We ask you all to share Linnea's story to you friends, colleagues and everyone, a lot of people together can help Linnea, and we need your help with donations, even more now.

Thank you so much for being with us and helping us.

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Kristoffer Nordström
Hi from Linnea - And "Linnea's spring fundraiser" started

Hi,

here is an overdue update on Linnea, we know a lot of you are waiting to hear how she is doing.

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Linnea has been home since february, and back twice to mexico for treatment, and she is doing very well.
She's one very happy girl who goes to school, spends a lot of time at home together with the whole family, especially big brother Kristian. 

Those two are insperable and spend a lot of time together. They're extra happy now that we've finally gotten some enjoyable spring weather in the south of Sweden so that they can go outside and play.
Watching them play on the field outside in the evening while making dinner is something we've looked forward to, that and all the other hundreds of mundane things that you do as a family.

Giedre and Linnea is now on their way to Mexico for a new treatment, and this time we're also doing a new PET scan.
A PET scan is a high resolution image of the brain and the whole body to get a much more detailed image, and also to see how active the cancer is.
This will give us and the doctors much valuable data to help us steer and guide the treatment going forward.

One very pleasant suprise, especially for me dad, is how much Linnea is enjoying playing video games together, she loves the social aspect of playing together by the TV and she is turning into a real little gamer girl :-D
She runs around in her Mario hoodie, and is back to being the coolest girl around.

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Now that we've gotten good weather and tempreature in Sweden Linnea looks forward even more to going to school and being outside at recess, she hates the cold, so its a real treat being able to drive her and Kristian to school and then dropping her off with her teachers and her classmates. Picking her up after lunch and listening to what they have done throughout the day.

One thing we feel we must mention is how amazing Linneas school has been throughout all of this. They are there 100% and offer us all the support we need, understand completely when Linnea needs to go to Mexico, or is too jetlagged the day after returning back from her +30h trips and needs to rest.
We are so lucky to have Linneas teachers, the school and the principal, all of whom show us so much love and support.

We now are starting to plan for the coming summer and fall, what treatments to do, how often and if we should do a refill of Linneas immunotherapy since it's recommended and we also have biopsy material still left over from the tumor in Monterrey.
Remember Linnea is only one of a very few children in the whole world who get both the novel intra-arterial chemotherapy and a customized immunotherpy based on her very own tumor biopsy.

We no longer rent an apartment in Monterrey and nowadays Linnea is travelling one week with one parent for every treatment every 3-4 weeks. 
The journeys are long, but in the end we get to spend more time at home together and Linnea gets more of a normal life at home and in school.
All of this is as you know expensive and we would never had been able to save our little girl without your help, thank you will never be enough to express our gratitude.

At this time we will also be starting Linneas spring fundraiser to make sure we have enough funds for the summer and fall, we hope ever so much that you can continue helping us and donate something. 
A lot fo small donations go a long way, and just as important (if not more) is the help we get every time spreading the word, with you sharing our updates on Facebook, Twitter and in social media and traditional media.
We are so grateful and humble for the fact that so many of you have helped us raise money for the treatment, a treatment that is working and that is showing other DIPG parents in the world that there is something priceless out there: Hope

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Thank you everyone for your help and we'll be sure to post soon to let you know how Linnea is doing, summer is coming and our girl is going to have her first summer break, and the traditional graduation from school with a pretty white dress.

Oh... and just so you know, someone lost her first two teeths as well the other day!

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Kristoffer Nordström
Gravy, robots, and positive news

On friday me (dad) and Linnea arrived home after a 30 hour trip from Mexico.
First thing that she demanded, and had demanded ever since Mexico, was potatoes and her grandmother's turkey gravy.

Linnea and me spent January together in Mexico for two more treatments, and on Monday earlier this week she did treatment #13 and afterwards our fantastic doctors came very glad and announced that the tumor had shrunk further slightly, confirmed by both them and the hospitals radiologists independently.
It was also according to the doctors noticeable from the MRI that the tumor is less and less active judging from the enhancement and amount of contrast fluid that is being absorbed by the tumor cells.

 
 

It's the first time me and Linnea have been away together this long from mom and Kristian, and even though we've missed home, January in Mexico with Linnea can only be described as something magical.
We've done arts&crafts, went to the arcade to play, played lots and lots of Uno cards at home, and played video games.

We've visited, and have been visted by, dear friends in Monterrey, and its been great catching up.
Oh, and Linnea and me have had a nail salon as well were we've taken care of the nails.. dads secret to bad paint technique is overcompensating with lots of decorations.

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And Linnea wanted to build a robot, so of course we did that one evening. That girl knows no boundaries in her interests, just like it should be for a 6 year old girl.

We've arrived home to Sweden where we were picked up by grandmother and grandfather at the airport, and even though its the first time in a long while since we've seen snow, I kind of miss the weather in Mexico already, Linnea although was ecstatic that she could go outside and shovel the snow with me.

Another fantastic news is that our doctors in Mexico have announced that they want us to go to a 4 week treatment schedule followed quickly by 5 weeks in between treatments. 
We've waited for this moment since last year, and the extra week at home will be very precious for us all.
It's a testament as to how well they think we are doing with the treatment and the progress with Linnea's tumor. 

Linnea already started asking when school starts because she misses her friends and the food there, it's apparently the sandwiches.
Luckily she didn't have to wait that long before meeting some of her classmates, this weekend she went to her first birthday party in a year, she was so happy playing with the other kids and dancing.

Thank you all for this, without you we couldn't have done this, and its all thanks to you and your generosity that we are here today with Linnea stronger than before, and on the outside a normal girl back to the way she was before diagnosis.
Oh, except now she's more than a year older and its a joy to see her grow up.

If you have the possibility, then a small monthly subscription of a donation to Linnea helps us so much in securing funding for future treatments.
It is also easier and more convenient for most people to donate a small amount every month rather than a large one. 
Of course a one time Swish or Paypal donation is also ever so welcome.

Thank you each and everyone.

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Kristoffer Nordström
Arts&Crafts in Mexico...

For the whole month of January, me (dad) and Linnea are staying in Mexico for two more treatments.
The latest MRI showed a stable tumor since December and we're so happy.

Earlier we went to a local arts&crafts supply store and for Linnea it was like a dream, rooms upon rooms with inexpensive material to work with.

In between said treatments we are having a good time, doing things like arts&craft at home which Linnea loves doing.
So now we spend the days crafting, painting, and trying out new techniques.

Even though its good here, it will be good to come back home to mom and big brother.

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Kristoffer Nordström
Thank you for helping us reach Linnea's Christmas Fundraiser

We're over the moon happy to tell you all that as of a couple of nights ago we reached the goal for Linneas Christmas Fundraiser, and donations keep coming in. Thank you!
You all made this possible and this means we've secured financing until the end of april next year.
It will take a huge stress away from us as we prepare to celeberate christmas together.

Again, a huge thank you to each and everyone that made this possible.
#SavingLinnea

 

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Kristoffer Nordström
Temporarily home again!

Hello everyone,

here is an slightly overdue update from us.

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We've been enjoying being back home in Sweden since a couple of weeks, the whole family returned temporarily back home to Sweden.
It's amazing being back and the biggest news of the day is that since last week Linnea has officially started school, she's met her new, very caring, and kind class mates, and she loves every day of school (she kept asking over the weekend when school was starting again).
The first day she was a bit shy, but a girl in her class came over, took her hand and said: "You don't need to be shy, we're all friendly here. Come lets go play together", and off they walked.

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Linnea has now travelled back to Monterrey with mom for 3 weeks and will live in Monterrey for two more treatments before going home to Christmas, it will be hard being apart but family life needs to function as well and big brother Kristian needs to go to school and seeing friends.

Dad and Kristian will just have to do the Christmas decorations and cooking.

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Last week we also travelled with Linnea to Lund and our Swedish oncologist team there to do a followup.
There were tears of joy and big happy smiles that wouldn't go away when the nurses and doctors saw Linnea roll in on her scooter ("Look I'm riding with one hand!", "Now I'm riding on one leg!") , last time they saw her she was rolling out in a wheelchair.
The doctors are extremelly impressed to say the least about Linneas progress and how well the treatment is working.
Remember that for 50 years they have never seen something like this with a DIPG patient who is actually improving and getting better over time.

But we're not done yet, Linnea will need more treatments before the cancer is fully gone, and we are constantly reminded of just how thin of a line that we're balancing.

Money is running out in the beginning of next year and "Linnea's Christmas Fundraiser" is in full swing, you all have helped us raise 50% of the goal set, and we are hoping for a Christmas miracle.
Friends, family, and people everywhere are helping Linnea with small donations, initiatives and much more, we couldn't be more grateful to all of you helping us.
There are people nowadays doing things like "Linnea's Kiosk", "Team Running for Linnea", selling ribbons at conferences, and much more to help raise funds for us. And there are so many of you spreading the news and sharing our updates, for that we are truly grateful.

Thank you.

Kristoffer Nordström
Treatment #9 and Linneas Christmas Fundraiser
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Several glad news today, and the most important one first.

Linnea is now home in Monterrey from her 9th treatment at the hospital, and the treatment went without a problem.
The doctors and we see that the tumor continues to shrink a little every time and we are very happy. A PET scan earlier this week showed that the treatment has lowered the activity in Linnea's tumor.

In a week we go home to let Linnea go to school, our girl will start in elementary school and it feels incredible!
Linnea has already worked through almost the entire first math book in Monterrey, she is so excited to start school, only 4 pages left in it!
Then Linnea will be home for three weeks, going back to Mexico for three weeks, and so on.

We are also incredibly pleased that together with the artist and Linnea's godmother, Maja Hallén, we have built the new page for Linnea's fundraiser, and in connection with that, we start "Linnea Christmas Fundraiser".

http://www.savinglinnea.com

The treatment in Monterrey works and reduces the tumor every time. But the raised money runs out in January 2018, we can not let this happen.

Therefore, we are starting Linnea's Christmas fundraiser and hope that all of you wonderful people can help us spread our call for help and help us reach our new goal of 50,000 €.

We are hoping for a Christmas miracle.

 
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Kristoffer Nordström
Treatment #8 and it keeps shrinking!
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Linnea is now home from the hospital after her 8:th treatment in Monterrey.
We're very happy to get the news that the MRIs show that Linneas tumor has shrunk further a little since the last treatment.

Later we will go home to Sweden and Linnea will be going back to Mexico for continued treatment on a regular basis, and from then she will start going to school at home, seeing her long lost friends, and just play and be happy.

Linnea has always liked math, and lately Linnea has become even more engrossed in it as she prepares for school at home in Sweden, she's so excited.
Every day she brings out her math book on her own and sits and does addition and subtractions, and she's really quick at it as well.
She's even asked dad what the strange signs (* and /) are for since she sees Kristian working with those :-)

Thank you everyone who keeps helping us fundraise for Linneas treatment, without you all we couldn't have been here. 
As it looks now we have funds until January next year so we ask you all for help.
Yet again we need to ask all of you for help in sharing and spreading our message, its through the power of the many that we have gotten here, many small, but oh so significant, donations.

Please share this with your friends and ask them to share it further.

[Linneas fundraising page for donations]
http://www.youcaring.com/linneanordstrom-760690

You can also use swish for donationations: +46 723 58 09 53

If you want to become a monthly donor to Linnea, because sometimes its easier to give a little for a few months, then feel free to use these Paypal-links below.
They will lead you to Paypal and with a couple of easy clicks you can sign up for a 6-month subscription for the amounts below.
So far more than 11.000(!) people in Sweden and world-wide have helped Linnea, if everyone could donate 10 euros each then Linnea would be set for the whole 2018.

 
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Kristoffer Nordström
6:th treatment...
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Linnea has now come home again from the hospital after her 6:th treatment in Monterrey which included the 4:th and final immunotherapy.
One of the doctors came out with a poker face and then gave us a big smile telling us the procedure went very well and that the tumor has continued shrinking and that there is less tumor mass.

We've now seen images comparing the first MRIs in May to the latest MRIs, and the change in the tumor is significant, much less tumor mass and size, and it's showing in Linneas general condition as well.
She is now running and playing without any problems, she regained full function of her right hand, she's curious again and is trying new things, and her laugh, oh my her laugh is so infectious now and puts big smiles on our faces.
We couldn't be happier and more grateful. When we come home to Sweden later this fall Linnea will start school, something that is sure to bring out tears of emotion in both dad and mom, she will make new friends and learn new things in life. And mom will buy a gym bag for Linnea, something we didn't believe would ever happen. 

What we also now know is that without a doubt this is the treatment for us, it's showing results, and it is going to be the treatment for Linnea for a long time forward.
We don't know how long we will need to do this treatment since Linnea and the other children here are pioneering something never seen before in the DIPG world. A bit later this autumn we will start spacing out the treatments a bit in between and over time further more.

We've had a lot of you asking us ever since May how we are doing finacially and that we should let you know if we need more funds for the treatment.

This is us humbly saying officially that we need more funds and your help yet again. 

With the current pace and treatment schedule we are running out of money in December this year, and it would be an understatement to say that we don't think about this daily and worry about how we will do financially.

So we ask you all that have helped us in the past to help us again. 
Large or small donations are very appreciated. And equally important if not more so, help us share this with your friends and your network, because we can't do this alone, but many people together can make a huge difference.

If you want to use Swish then use this number: +46 723 58 09 53

Please help us save Linnea.

Maja Hallén
Happy birthday!
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Idag firade vår underbara Linnea sin sjätte födelsedag.

Today our lovely Linnea has celebrated her 6 year old birthday.
Half a year ago we celebrated her 5.5 year old birthday party because honestly at that time we didn't know if we were going to celebrate today.
And now our fantastic Linnea is not only doing better, but walking, running, jumping on trampolines, and climbing!

There has been lots of presents, quite a few of them Superhero inspired (Linnea is going through a Supergirl phase), guests, a pinata(!) and cakes.

Yes several cakes, because unexpectedly the staff at the clinic where Linnea was in this morning had found out it was her birthday so they made an extra errand in the morning and suprised us with the beautiful cake you see in the images, they are fantastic and so caring there. Thank you Stephanie and Adriana!
We even had a bouncy castle since a friend of us here arranged that for Linnea!

For all the images, see this facebook post.
https://www.facebook.com/kristoffer.nordstrom.792/posts/10155311563448580


Everyone of you have helped us make this day possible by supporting us, so its only right you get to celebrate with us a bit as well here.
We also humbly ask of you to help us reach the 7 year birthday party and then on from there, any donations, big or small, for the treatment are ever so appreciated.

Maja Hallén
Great news...
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"The world is full of great and wonderful things for those who are ready for them."
//Moominpappa from the book of at Sea

Great news everyone, Linnea is now home from the hospital where she did her 5th Chemotherapy and 3rd Immunotherapy.
This time around it was a big deal since it was the first time she got the custom made immunotherapy based on her own biopsy of the tumor that we managed to get shipped from Sweden to here in Monterrey (https://www.facebook.com/kristoffer.nordstrom.792/posts/10155250323008580).

Her immune system has now been given an exact map of the tumor cells to search out and destroy!
We now wait for the next MRI to see the result of this ground breaking treatment.

The doctors came out this time smiling and said that the treatment had gone very well, and that they had seen continued shrinkage of the tumor this time as well. In fact there was more shrinkage this time than compared to the shrinkage the last treatment.

Given the uniqueness of the Monterrey treatment delivered intra arterially, the 8-11 diffferent drugs for the chemotherapy, 2 diffferent immunotherapies, and now having made the immunotherapy unique for Linnea it is no overstatement to say it is very likely that this is the most advanced treatment to date for DIPG. You all helped us make this possible.
We are so lucky to have discovered this treatment and the doctors here.

You are the ones helping us achieve this, we could not have done this without the help from you all and we thank you from the bottom of our hearts. The treatment for Linnea is very expensive, but also very efficient as we keep seeing, so if you can help supporting us on this journey we would be ever so grateful. By donating to this cause you are literally giving us bigger hope, and for our Linnea better health and life itself.


Thank you for your kindness.

Maja Hallén
Logistic challenge...
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Today something amazing happened!

We have now managed to get Linnea's tumor sample safely shipped to Mexico from Stockholm and it will now form the basis for Linnea's immunotherapy! This means that Linnea will receive a tailor-made immunotherapy and her immune system will learn to recognize her own tumor. This is as far as you can get in DIPG treatment when in combination with everything else here!
Not only does she get a unique cocktail of 8-11 drugs in the chemotherapy with a unique delivery mechanism (Intra-arterial Chemotherapy), not just one immunotherapy but two ("Autologous Denditric Cell Immunetherapy" (Denditric Cells), and "Adaptive Cell Immunetherapy" (T-Cells)), furthermore, the immunotherapies will be uniquely created just for her tumor.

A few weeks ago, our professor and immunologist notified us that there was opportunity in the university at Monterrey and that they could replace the general anti-genes for immunotherapy and extract anti-genes from Linnea's own biopsy samples of tumor tissue.
However, the tumor sample had to be stored correctly, and the majority of all samples are stored in paraffin which does not work.
We had to arrange the delivery to Monterrey all the way ourselves, and the test was extremely sensitive and had to be transported in dry ice and -80 degrees all the way, otherwise the saple would be destroyed and become worthless, the only sample in the whole world.

Thanks to our wonderful oncologists in Lund, we learned that the sample in Lund was saved in paraffin, but that some of the biopsy sample stored in Stockholm at Childrens Tumor Bank is "freshly frozen tumor tissue" and could be used for this.

So just roll up your arms and take the next step then.

A wonderful and highly specialized company "YSDS - Your Special Delivery Service" (http://www.ysds.com/) was willing to undertake our assignment even though they usually do not work with privat persons.

An international delivery like this is extremely complicated, full of things that can go wrong, documents that have to be filled in beforehand and be cleared by customs, and in the end there were four different countries and two continents involved and a host of opportunities for the human factor to present itself.
Dry ice also evaporates all the time so the logistic operation is extremely time-critical with very few margins for errors.

But YSDS has done this before, fixed it like professionals, and today I was at university to see the sample being delivered to the lab.
It appeared in "excellent condition" and is now in safe storage! Several weeks of constant anxiety and tension released in just a few moments.

In the end, YSDS refused to charge us for this logistic nightmare and sees it as their way of helping Linnea in her and our struggle. I do not even dare to think what the endevor would have cost.
If you are an entrepreneur and need world-class excellence for your next delivery, consider using YSDS, they are incredibly professional and nice.

All of this we do in Monterrey would not be possible unless you helped us every step of the way and we are so grateful for all the donations, so big and small help us save Linnea, thanks from the depths of our hearts!

Maja Hallén
4:th treatment and thank you!

Linnea is back home from her 4:th treatment and although tired she is feeling well. We see continued shrinkage and less enhancement of the tumor, thank you so much everyone who is helping us on our journey!

Since we re-opened the fundraiser you have helped us fundraise 300.000SEK which covers a combined Immunotherapy and Chemotherapy, thank you so much!

If you can please consider helping us, big or small, all donations make a difference

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Kristoffer Nordström
First immunotherapy administered!

We know a lot of people are waiting for this so me and Giedre want to give you the fantastic news.

Linnea had her third Intra Arterial treatment today and all went well without complications, this was the first time that we added the immunotherapy to the treatment, Linneas immune system is now being taught how to recognise and attack the tumor cells itself (Autologous Dendritic Cell Immunotherapy)! 

The amazing news of today is that the treatment continues to do its job and we now see further shrinkage in the tumor from the last treatment three weeks ago. The doctors see a distinct reduction in size since last time!

We now know that this is a treatment that is working for Linnea and for the other children here in Mexico, there are now over 30 families from all over the world here. 
The treatment is very effective, but also very expensive, with the combined Immunotherapy and Chemotherapy the cost is 30.000USD (250.000SEK) every third week, later once Linneas immunesystem is trained the treatment will go back to chemotherapy only.

We realise we need to do this for an unforseen time going forward and looking at the costs of each treatment and our budget we need to ask all of you who have helped us get here to help us even further in saving our daughter.

Any donations, big or small, are more than welcome, thank you so much everyone who has helped us get here.

Swish donations from Sweden are also very welcome, the number is: +46 723 58 09 53

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Kristoffer Nordström
Second treatment done!

I know people are waiting for news so I won't keep you waiting any longer than necessary.

Linnea is now out of her second Intra-Arterial treatment and all has gone without any complications! 
She is currently with mom in the recovery and will be transfered to a private room in a few hours if she's feeling fine.

But the biggest news of the day is that we were shown the MRI:s from today and compared to the MRI:s three weeks ago...

There is a clear and distinct reduction in the size of the tumor!!!!
It is so apparent that even untrained eyes like mine and my wifes can see the difference.
We will have a followup consultation next week to go over the images and the plan forward in more details, but this is fantastic news today.

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Kristoffer Nordström
An update from Mexico

Hi all,

here comes an update from Mexico.
We have now been here for a couple of weeks finding our way in a new country with fantastic people and a language we fully don't master yet.

Linnea has had her first intra arterial treatment here and it went great. We only needed to spend the night in a private room and got discharged the day after.
The doctors we have are amazing and very competent people and we feel very well taken care of here. 

Linnea is doing well here, having fun and playing with big brother, there's a pool and a playground in the apartment complex where we live.
We spend the days with school work for big brother and the afternoons visiting museums, parks, or simply do grocery shopping.

Thank you to everyone who has helped us get here and we will keep you updated once we get results from the treatment.

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Kristoffer Nordström