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Halle's Medical Fund

$59,796 of $100,000 goal

Raised by 399 people in 23 months
Created September 29, 2017
Reaching out to old friends, near and far.  

Matt and Carolyn Krawzcyk's youngest daughter, Halle, has been diagnosed with a rare form of cancer called Chordoma. They have found a tumor in her C1 vertibrae, and Halle may have to have chemotherapy before radiation treatment.  Because of where the tumour is located, they cannot perform surgery and the family will have to travel to Boston, MA, for a procedure called 'proton beam radiation'.
 

The family has been housed at the Ronald McDonald House in Vancover, BC for the last two weeks.  They anticipate their stay at RMH in Vancouver could be as long as six months, with an additional 9-10 weeks in Boston.  Carolyn has been off of work for over a month now, and Matt has been flying back and forth between Armstrong and Vancouver to try to continue to work as bills pile up.  It breaks Halle's heart when her Dad has to leave.  

Halle is 8 years old and full of life.  She loves to climb trees, run, bounce, and play.  She is very active in gymnastics and loves hiking with her parents and her big sister, Hunter.  She has a heart of gold and is not afraid of anything.  She is quiet and shy at first, but will become your dearest friend once she gets to know you.  

Please, let's join together to help our friends cover their expenses so they can concentrate on what's most important;  Halle's health and the four of them being together as a family.  Our thoughts and prayers are with them all at this time.  

Thank you and God bless! 




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Update from Carolyn:

This photo is Matt doing a nightly flush on Halles PICC line.

So it’s been 3 weeks since scans... we didn’t mean to keep you waiting-but we too have been kept in suspense, or rather extreme stress!
There was a discrepancy between our pet scan and mri where some things showed which was cause for extra attention.
Halle is still considered to be stable however we will have scans again in another 3 weeks time to keep a watchful eye.
We have an amazingly supportive team/Dr/Nurse Clinician-and we love and respect them dearly. Our team is keeping a very watchful eye.
We have found a phase 1 trial in Toronto (as also recommended by the 12 Chordoma specific Drs we met in the United States) and our oncologist here is making necessary arrangements in case we need to move in that direction.
Life can feel so difficult! Stress levels are running high and this is now heading into year 3 of the uncertainties life has held for our family.
Next week (Aug 28) Matt turns 40-on the same day as our initial diagnosis, and last year our secondary diagnosis.
We tend to be on edge near the end of August as this has proven to be a very difficult time of year for us 3x now. We thought we would be celebrating big.. but we’re exhausted. We’re not planning anything apart from hopefully enjoying some time at home together.
We continue to try and make the most of every day.
We’re currently back in Vancouver again for regular scheduled treatment tomorrow.
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Update from Matt and Carolyn:

Nearly a year ago we were being sent to Canuck Place-what a year it has been!
Halle is currently feeling well and was able to finish off her Competitive Gymnastics (level 4) for the year even winning some medals.
Halles tumours in her neck still remain. The new Immunotherapy drug is currently holding the disease (and has shown shrinkage of tumours initially) with no further progression. We are nearing the one year mark of being on this new drug-travelling the Coquihalla Highway to Vancouver every 10 days for treatment. We now have PET scans, CT scans, and re-imaging/MRI every 3 months.
After year one of Nivolumab we are told it is unlikely to see further tumour shrinkage but Halle would be able to remain on this drug as long as she can tolerate it (Autoimmune reactions etc), and as long as it continues to work.
In April we were able to take Halle to The National Institute of Health & National Cancer Institute (this was not arranged through our medical system) in Bethesda Maryland where Halle became part of a new trial.
Matt and I were able to meet and have a private board room discussion meeting with 12 of the worlds best Chordoma specific Drs in each of their respective fields regarding Halles health. We were able to glean a lot of new information regarding future of treatments etc and now have these Drs involved in future of care. We are SO very thankful for all of her care team!
It is likely that in the very near future we will enter a new trial in Toronto and we will also likely travel to Boston for 3+ months for Proton Beam Radiation.
Due to Halles diagnosis, (Stage 4 Chordoma/ w/ metastasis), Matt and I remained off work the greater part of the last 2 years living away from home predominantly the first year, & much of the first few months of the second year.
We have been so thankful to have been able to be home 10 days at a time in between Immunotherapy treatments more recently once Halle adjusted to the new treatment. Matt has also now been able to return to work for a few months.
The future is still very unknown and we live trying to make the most of each day.
When Halle feels good and appears to be doing well, we are well.
When there’s glitches with pain, medication side effects, not feeling well, or any vomiting, we are brought to our knees very quickly and it’s hard to turn our minds off.
We continue to research and do our best to support Halle in this uphill battle.
We have all of our scans & re-imaging coming up again in the first week of August. This is always a very unsettling time.
We continue to keep all hope.
Thank you for supporting us!❤️
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Update from Matt and Carolyn:


Today has been a great day.
Our pet scan affirms the mri and chest scans.
There is no sign of previous metastasis to the lungs, they’re clear.
In the neck, where the tumours were large and pressing on the spinal cord, they’re small enough now that they’re hard to measure. They do still illuminate on the PET scan so we know there’s still cancer, however we’ve been granted another year of the Immunotherapy drug today.
We can continue hitting the cancer with the same trial drug (Opdivo/Nivolumab) we’ve been using for the past 12 weeks.
Those involved with the Personalized Onco-Genomic (POG) testing of Halles tumour at BC Cancer Agency are also pretty excited at these results. We would not have found this drug without POG testing. This is very exciting news!
It feels slightly easier to breathe tonight.
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Update from Carolyn:
A little update:
Halles first infusion of Opdivo/Nivolumab was last Friday. It seemed to go fine. Since the first infusion through her pik line, neck pain increased, and nausea and vomiting all came on.
We were having to give pain meds round the clock. Rough estimate by day 4 she was pretty good again. Nausea is gone. Pain is minimal, meds not needed..
We will likely not know how things are going for 3 months. We don’t want to scan too soon b/c we need to give this drug a chance to work before rescanning. We don’t want to lose the drug by scanning to soon with no results. Her next infusion is Thursday.
We remain ever so hopeful. Emotions are high alongside stress.
Matt has not been sleeping well and is sick today. He didn’t sleep last night b/c of feeling aweful.
We’re Hoping it’s just a bug-or stress that has finally caught up w him?
It adds to the stress! He’s kind of our rock.
Posting a few brutal shots to the reality of life right now. Even though it feels brutal-we really try to make the best of every day.
Reality shots! Lucky for me, I’m always the one snapping photos-so I don’t have to be in them.
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$59,796 of $100,000 goal

Raised by 399 people in 23 months
Created September 29, 2017
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