Help us save our Linnea

For: Linnea Nordström
Karlskrona, Blekinge län, Sweden
Organizer: Kristoffer Nordström
Help us save our Linnea (Linnea Nordström)
€227,635
of €310,000 goal.
Raised by 3015 donors
73% Complete

The Story

”Det sägs att det behövs en hel by för att fostra ett barn. Nu behövs det en hel by för att rädda vår Linnea”
(See English text below)

Linnea är fem och ett halvt år och kommer från Karlskrona. Hennes värld kretsade till nyligen kring My Little Ponies, cykla och popcorn... mycket popcorn. Vår älskade spexande dotter som har en enda bästa vän: sin älskade storebror Kristian.
Så var hennes värld - fram till för ett par månader sedan när hon plötsligt och chockartat blev drabbad av och akut opererad för en hjärntumör.

Efter operationen hoppades vi att de dåliga nyheterna skulle ta slut.
Men nu har vi fått veta att tumören är en aggressiv sort som kallas DIPG (Diffust Pons Gliom).
I korthet: Linneas chans att överleva är nu förtvivlat liten.
Men vi är hennes föräldrar och vägrar att ge upp. Hon ska få alla möjligheter vi någonsin kan ge henne att bli en av överlevarna. För möjligheter finns, om man går bortom de vanligaste behandlingsmetoderna, till Mexiko.

Linnea får nu en behandling i Monterrey Mexiko som är unik. Linnea och flera DIPG barn får här en behandling som hjälper.
Hon får en cocktail av olika mediciner direkt till området i hjärnan som påverkats via "Intra Arterial Chemotherapy".
Tumören hos Linnea krympte signifikant redan efter första behandlingen och fortsatte att krympa efter den andra.
Nu har Linnea påbörjat en kombinerad behandling av kemterapi samt immunterapi där hennes eget imunförsvar tränas att attackera tumören.

Kostnaderna för behandlingen och resorna är dock väldigt höga. Högre än en vanlig människa kan betala: En kombinerad behandling Kemterapi samt immunterapi kostar 30.000USD (250.000SEK). I dagsläget är det oklart hur många av dessa Linnea kommer att behöva men så småningom kommer tiden mellan behandlingarna att drygas ut.
Men vi ser att det fungerar för Linnea och alla andra barn som är här och får behandling.

Vi vägrar att låta kostnader vara ett hinder för vår dotters liv, och vi behöver all hjälp som ni kan ge för att åstadkomma detta. Oavsett vad ni kan donera så är vi oerhört tacksamma.
Det sägs att det behövs en hel by för att fostra ett barn. Nu behövs det en hel by för att rädda vår Linnea. Vi vill så gärna att hon ska få börja skolan, gå på skoldisco, ta alla simmärken, lära sig cykla utan stödhjul, bli kär, se världen, uppleva det fina som världen har att erbjuda.

Om du vill använda Swish så använd Kristoffer Nordströms nummer: +46 723 58 09 53

Eventuella medel som blir över kommer självklart att doneras till forskningsprojekt för DIPG-forskning och därmed komma till nytta för andra barn.

--------------------------

"There is a saying that it takes a whole village to raise a child. Now we need a whole village to save our Linnea"

Linnea is five and a half years and comes from Karlskrona in Sweden. Her world revolved up until recently around My Little Ponies, riding her bicycle and popcorn... lots of popcorn. Our beloved daughter who has one best friend: her beloved big brother Kristian.
That was her world - until a few months ago when she suddenly and shockingly became afflicted, and got emergency surgery for a brain tumor.
After the operation, we hoped that the bad news would end.


But now we know that the tumor is an aggressive variety called DIPG (Diffuse Pons Glioma).
The short story is that there is a heart-breakingly minimal chance of survival using established treatments.

But we are her parents and refuse to give up. She'll get all the opportunities we can ever give her to become one of the survivors. For the opportunities exist, if one goes beyond the most common treatment methods, in other Mexico.
Linnea is now receiving a treatment in Monterrey, Mexico that is unique. Linnea and several children here is receiving this treatment that is helping them in a fantastic way.
She receives a cocktail of drugs directly into the area in the brain affected via Intra Arterial Chemotherapy.
Linneas tumor started to shrink significantly already after the first treatment and has continued to shrink after her second.
Now she has started a combined Chemotherapy and Immunotherapy where her own immune system is being trained to recognise and attack the tumor.

The cost of treatment and the journeys are very high. Higher than the average person can pay for: $ 30 000 (250 000 SEK) for the combined chemotherapy and immunotherapy. This treatment is currently being repeated every third week. In the current situation, it is unclear how many of these Linnea will need but eventually the plan is to increase the time in between treatments.
But we see that the treatment is working for Linnea and all the other children that are here and receiving the treatment.

We refuse to let the cost be a barrier to our daughter's life, and we need all the help you can provide to achieve this. Whatever you can donate, we are extremely grateful.

We so desperately want her to start school, attend school discos, collect all the swim badges, learn to ride her bike without training wheels, fall in love, see the world, and experience all the beauty that the world has to offer.

If you're from Sweden and want to use Swish use Kristoffer Nordström's number: +46 723 58 09 53

Any funds left over will be donated to research for DIPG research and thus be of benefit to other children.

Fundraiser Updates

Posted on August 12, 2017

UpdateImage

Posted on August 12, 2017

"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.


Posted on August 3, 2017

UpdateImage

Posted on August 3, 2017

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!

Posted on July 25, 2017

UpdateImage

Posted on July 25, 2017

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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