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.


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.

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.

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.


Kristoffer Nordström
Temporarily home again!

Hello everyone,

here is an slightly overdue update from us.


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.


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.


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

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".

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.

Kristoffer Nordström
Treatment #8 and it keeps shrinking!

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]

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.

Kristoffer Nordström
6:th treatment...

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!

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.

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...

"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 (

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...

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" ( 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

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

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.

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.

Kristoffer Nordström
Home from the hospital!

Hi everyone.

Linnea has now come home from the hospital after nearly two months, she is now receiving regular treatment in our Swedish hospital.

We still need to wait a few weeks before we know more about the surgery in the UK, but we just want to give a huge thank you to everyone who has helped us.

Kristoffer Nordström
Arts & Crafts

Today Linnea felt better and spent the day with arts and crafts at the fantastic place in the hospital called "Play Therapy / Lekterapin"!

Kristoffer Nordström
Thank you everyone!

Thank you each and everyone who has made this miracle happen. In less than 24hour we have managed to reach the target needed for Linneas treatment and more. 

We are truly amazed by all of your support and are at a loss for words at what you have done for Linnea and us her family.

Kristoffer Nordström