Laurie's Brain Tumour Treatment
$95,182 of $92,270 goal
Laurie and Terry Vanderheyden and their 7 great kids, really need some help. Specifically, $92,270 CAD ($70,000 USD) to fund her therapy treatment in the US.
Laurie has a type of brain tumour that is called an acoustic neuroma. It initially caused partial facial paralysis, including the inability to close her right eye.
Hearing loss (which seems to have begun)on the same side is another effect of the tumour as it grows.
The paralysis began Aug. 15, 1992 but the tumour was not discovered until 2005. The tumour has been slow-growing but now measures 4x3 cm (1.75x1.25"). There is now also an extension over the carotid artery which is very concerning.
Because the tumour continues to grow, Laurie and Terry have been looking at various treatment options for some time.
The surgeon she has dealt with would like to remove it, though is concerned with the possible risks to the surrounding area and has said it would result in hearing loss and complete facial paralysis of the right side.
Their radiation oncologist confirmed that surgery is not a good option for Laurie, nor is conventional (termed "gamma knife") radiation therapy. The head of radiation oncology for Princess Margaret Hospital (Toronto) has recommended "fractionated proton beam" radiation therapy, a less harmful and more appropriate and effective type of treatment for her type of tumour. Proton Beam is only available in a handful of centres worldwide.
Furthermore, Loma Linda University (where the treatment was invented) published a series of 30 cases of acoustic neuroma treated with proton beam, all of which completely resolved with the treatment.
Sadly, Laurie has been denied coverage from the Ontario Ministry of Health. The Ministry of Health reasoned that she should take an optional treatment in Ontario, but as mentioned earlier, the safest and most effective treatment for her situation is the Proton Radiation.
She needs to get this treatment in the US.
THE COST ($70k USD IS FOR THE TREATMENT ONLY)
The treatment encompasses 7-8 weeks, starting with a pre-consultation 1-2 weeks before commencing 6 weeks of daily radiation treatments (Monday-Friday).
Laurie and Terry plan to travel as a family as it would be too long a time for the family to be separated and also because Laurie home-schools the children. Terry will be working part time on-line, helping with the homeschooling and making sure Laurie gets any needed rest.
Laurie and Terry are hoping that some of you generous and loving people will be able to help them out. If you cannot help personally, please pass this information on however you may, and please pray for Laurie's healing.
God bless your generosity!
It has been a year since my last update. (Today is, once again, Thanksgiving, and we again have very much to be thankful for!)
This summer, Laurie had her second post-treatment follow-up MRI with her oncologist at Princess Margaret Hospital in Toronto. The MRI showed that the tumour is stable, i.e. it has not grown. So, things are on track; in other words, things are good! We were recently told that Laurie may actually be eligible for a small life insurance policy!
Also, Laurie had surgery in Toronto this past summer. Because of the tumour, one eye never closes completely, so there was a gold weight placed in the eyelid to help her eye stay partially closed. The problem is that every 10 years or so, the weight migrates out of place and has to be reattached. The surgeon was concerned that this may be the last opportunity to replace it, as the delicate tissue of the eyelid can only be operated on so many times. So, she has had the weight removed for now, while the tissue heals, and a new weight will be sewn in place in the next month or so. We are in very good hands.
We're so thankful that Laurie was able to get this treatment. Again, thank you all so much for your great generosity! We love you all and pray for God's continued blessings to be showered upon you.
We are especially indebted to our wonderful Boston benefactors, who have themselves endured great hardship and loss over the past year. Please pray for them.
We wish all of you a blessed Thanksgiving!
Terry & Laurie Vanderheyden and Family
It has been some time since we've updated you all, and we apologize for this.
Today, Canada's Thanksgiving, we have much to be thankful for! Not least of which is the great generosity and kindness we have experienced from all those who helped us get this treatment for Laurie.
This summer, Laurie had a post-treatment follow-up MRI with her oncologist at Princess Margaret Hospital in Toronto. The MRI showed that the tumour is stable, i.e. it has not grown. This is what we were told to expect at this point, from the oncologist in Boston. This is very good news!!
I asked the oncologist's resident about the mechanism for protons - how they affect tumours. She said that the protons disrupt the DNA of the tumour cells, so when these tumour cells try to divide, they can not. And so the brain slowly resorbs the cells as they eventually die. Thus the tumour slowly disappears over a lengthy period! In fact, they told us they would only expect the tumour to shrink in size after 1-2 years (or more) of follow-up, when looked at with MRI.
It's truly a breathtaking treatment and we're so thankful that Laurie was able to get this treatment.
Again, thank you all so much for your great generosity! We love you all and pray for God's continued blessings to be showered upon you.
We wish all of you a blessed Thanksgiving!
Terry & Laurie Vanderheyden and Family
p.s. the new family picture was taken when visiting to the Toronto Zoo. We visited while in Toronto for Laurie's appointment. The kids loved the Orangutans. A colleague just asked me if that was me in the middle of the picture.
Laurie completed her treatments Tuesday Dec. 1st; she rang the bell, a tradition shared by those undergoing tumour treatments, to mark the completion of treatment.
Laurie felt very well throughout. The proton beam radiation is amazing in so far as that it preserves the surrounding tissues so well that there are almost no side effects - at least not with Laurie's tumour type. She has been very blessed. She felt some fatigue immediately after treatments and in the latter weeks a bit of ear ringing, which the oncologist said was likely treatment-related.
All in all they say the prognosis is very good, but that we should not expect a big change in the tumour as far as size in the next 6 months or even year. Their goal is to arrest its growth with the hopes that over the longer term it will slowly regress. The entire process can take years, but she is now out of the woods, so to speak, as far as the tumour no longer growing. We are very grateful for that. We continue to pray that her related symptoms continue to regress as far as the paralysis and such.
The children loved Boston. We tried to skate once per week. I was surprised at how popular ice skating and hockey are there! It feels a lot like home. I've found the people in general to be very nice, courteous, even the drivers. The traffic there is something else, but it somehow hasn't erased the humanity of those behind the wheel.
Laurie's aunt and uncle very graciously gave us a membership to the New England Aquarium. The kids were thrilled to be able to pet sharks and manta rays, and to see up close a wide variety of penguins, and many kinds of fish and aquatic animals.
Laurie is thankfully able to do all her follow-up MRIs and oncology appointments at Princess Margaret in Toronto. We will definitely update you all whenever there are any updates. Also, we will try to upload a picture or two, or even a video from time to time.
Once again, thank you so much to you all for your great generosity! God bless you and may His love fill you this Christmas.
p.s. Dear friends of ours 4-month-old baby died on Saturday. They are a beautiful young family; please keep them in your prayers at this difficult time. Also, a fund has been set up to help them with funeral and burial costs, in case anyone would like to donate or share: https://www.gofundme.com/s3e48kgk
We give thanks too to all of you. You are family and you are friends. Some of you have never even met us and there you are offering us so much help and hope.
And the list goes on:
We thank the many priests who have prayed with us and encouraged us to remain hopeful and trusting in God's great love.
We thank the O'Connor family here in Boston who have given our family the use of a house to stay in during treatment and much support in many other ways as well.
We also thank a number of new friends we have met here in Boston. They have been so helpful as well, in so many different ways.
We can only say Thank you, Thank you, Thank you! to all of you, to each one of you, and we will pray for you in our continuing prayers during the days and months ahead.
On the business side of things:
We want to mention that we had stopped donations from coming in as we were able to pay for the treatment in full (70,000 USD close to 92,000 CAD!) We should also mention that $70,000 USD is, in fact, a "charitable" rate.
The GoFundMe site indicates that $95,182CAD has been contributed. Of this, $54,182 came in to GoFundMe directly. Subtracting administrative fees of 5% for GoFundMe and 2.9% for WePay this meant we actually received $49,274.86 through GoFundMe. On top of this, $41,000CAD was donated offline ie. through other sources, totalling $90,274.86CAD. We had added most the offline contributions to the list on GoFundMe to keep everyone updated on overall progress towards our goal (minus those we have not yet been able to contact).
Also some relatives and friends offered a donation that they wished to be used for other expenses outside of treatment. Of course there have been other expenses in addition to the treatment costs so we are very grateful too for all the generous support for those who gave over and above the actual treatment costs!
I hope that this is clear enough to be understood. We are so thankful for everyone's kindness and help and we want you to know that we have taken it very seriously to be prudent with each donation.
God bless you all!
Love, Laurie (& Terry & the kids)
Please post and share Laurie's GoFundMe to all your personal and business lists. The picture you see here is of my husband - who Dr Terry helped when he was given no hope by oncologists and palliative care teams. 5 years later this is my husband ringing a bell of celebration, and of hope to all. Laurie needs to be able to ring this bell too! Canada can't offer the safest treatment for this tumour - so we help by giving in faith & love.
Laurie, I'll certainly be praying for you. I do believe in the power of prayer! I too, am facing the same thing...diagnosed about 8 months ago. My acoustic neuroma is on the 8th nerve, rt side. Making it more complicated, I had Menieres about 15 yrs ago & after 3 inner ear surgeries lost all my hearing & balance already on the left side. I wasn't prepared for this. I'm glad u have your family with you to help you through this difficult time. May God bless you and your family.
we love you so much.has this been sent to all the donors?moeder.