Halle needs Opdivo/Nivolumab Cancer Treatment TODAY!!

I am writing in concern for an emergency need for the drug Nivolumab/Opdivo. 

My daughter Halle Krawczyk, age nine, was diagnosed with medically incurable cancer "Poorly differentiated Chordoma" last August.
At the time of her diagnosis we also found out that her cancer had already metastasized to the lungs in 2 places. Concerning the severity of Halles disease and the metastasis, Halles tumour received additional funding through POG. Sixty thousand dollars was spent in order for geneticists to sample Halles tumour to see if there would be any available treatment that may help Halle. Navolumab/Opdivo was the one drug that came back as a potential help.
Our physician applied at the time of these results for us to have access to this drug, however we were denied.

Halle received 4 rounds of the most gruelling chemotherapy agents to treat her cancer.
Up until 2 weeks ago, Halle was doing great. Halles tumours from MRI 2 months earlier had shown that the tumours in all places in her body were nearly non existent.
We thought we were beating her cancer.
Halle starting having symptoms again in the last 2 weeks. Its been a very rapid onset of these all too familiar symptoms.

Halles tumours are larger now than they were when her cancer was originally diagnosed. The metastasis to the lungs is also back and larger than previous as well.
The tumour is now infringing on her spinal cord and she is showing beginning signs of this tumour impeding her spinal cord.
It would appear that these tumours are growing at an unprecedented pace. We have no time to waste or to lose which is why I ask you to sign my petition.
I am appealing to you on the basis of compassion and emergency to sign my petition that the BC Cancer Agency, Bristol-Myers Squibb, or any other company that is able, will release this drug to us today, or that the makers of this drug will give it to us on a basis of compassion.

Our Doctor from Children's hospital in Vancouver BC Canada has informed us that he is willing to administer this drug to Halle and oversee her while she would be on this drug. He has also informed us that there are already other kids at Children's hospital who are on this drug as well.
Halles father has been actively part of a Chordoma Foundation group where he has found several cases of others with Halles cancer who are responding well to Nivolumab/Opdivo. Tumours have shrunk and are now stable through use of Nivolumab.
Halle is a bright, vibrant, girl with a passion and exuberance for life like I have never seen. Halle has goals of becoming a gymnast, and she has some incredible talent in the sport as well. Halle is still incredibly strong, able to do 7 back handsprings in a row, able to climb a rope using only her hands to the height of a typical gym ceiling, amongst other talents. She has more vibrancy for life than anyone I know and as her mother I am begging you to please release this drug to us. We cannot afford to let any more time pass. We do not want to see Halle paralyzed. This tumour is currently infringing on her spinal cord.
We are a family of 4. We love our Halle.
Halle has an older sister (Hunter) who journalled this week that she doesnt know what she will do without her sister if she dies from her cancer. Hunter is devastated by Halles relapse.
If anyone can kick this disease, it is Halle. She is made of pure determination and has incredible positivity towards overcoming cancer. If anyone can do it, I believe she will!
We are in a current race with time.
This tumour at any moment could leave Halle paralyzed, those types injury are permanent.
We have already tried typical conventional therapy, even when there was potentially no hope, and no odds in our favour. We have tried what was recommended by the medical community and it appeared to have worked for a period of time.
We have exhausted all options and are desperate!
Why would a POG study be done on Halles tumour if the one drug that showed potential to treat her cancer would only be denied to her in the end? What a waste of money and a complete devastation to our family if Halle will be denied Nivolumab/Opdivo.
You have the power to turn this situation around for our family. Please, I need my precious girl! She gives me reason to live.
We love our daughter beyond words, and her sister deserves to have Halle in her life. She is largely the reason this family laughs and has so much fun together.
Please, do not make us wait another day for this drug.
Carolyn Krawczyk on behalf of all of us.
(Matt, Hunter, and Halle)

Update #15 years ago


I am happy to report that the Compassionate Access Program at BCCA has approved a course of Nivolumab for Halle - - I have just received the email!
Amazing news!
Thank you for all the encouraging messages and everyone who took time out of your day to sign my petition!
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