Help Elise de Groot through her battle with Cancer

Thank you all for reading, sharing, and donating to Elise and Lucy’s campaign.

Our goal was to provide Elise with a service dog to improve her function and overall quality of life. We are so grateful that Lucy has done that and so much more.  

However, Lucy will now be even more important as Elise faces a long, difficult battle with the recent diagnosis of a rare type of breast cancer.

The initial $5,000 raised went directly to the Service Dog Connection to pay for Lucy and her training. We are now looking to raise the money needed for this new battle Elise is facing.

 Urgent Elise Update:

The last couple of months have hit Elise unexpectedly hard.  At the end of April, she had a massive infection in her mouth that caused an abscess and fissure.  Unfortunately, due to risk of sepsis, Elise had to undergo extensive emergency dental work, She had to take out a loan for $5,500 to fully pay for it.  On top of that, she has been undergoing multiple tests to try to diagnose a very large mass that suddenly appeared in her right breast, and was not clearly showing in imaging.

After extensive testing, she has recently been diagnosed with a rare, “sneaky” type of Breast Cancer: Invasive Lobular Carcinoma. 



This summer, Elise will have to have a mastectomy in her right breast, and doctors are still working on a treatment plan where she will either have to perform a lumpectomy or mastectomy in her left breast as well, due to a suspicious spot coupled with possible genetic risks.  After Elise’s mastectomy, she will undergo radiation to fully eradicate the cancer.  Other therapies and staging (she’s either 2B or stage 3) will be determined after the surgical biopsy. Treatments and reconstruction options will heavily depend on how her Complex Regional Pain Syndrome (CRPS) responds to the immense trauma on her body. Targeted Hormonal Therapies will be a part of her treatment plan, but  there are risks and special considerations and monitoring will have to be made in order to keep Elise’s Adrenal Insufficiency and Thyroid levels managed. 


 










Lucy Update:

Lucy was supposed to start immunotherapy for her allergies, but sadly, the money Elise set aside for that had to be reallocated to take care of her dental emergency.  Lucy is still healthy and able to work, but because she is a working/service dog, she is unable to avoid some of the things she is allergic to, so her vet has suggested that Elise be proactive and treat her allergies before it affects her ability to work. 

Lucy’s cortisol training has been going great!  However, it has gone from being a task to improve quality of life to one that may very well save Elise’s life.  The goal was to have her giving consistent alerts by the end of the summer.  Given the current circumstances, the timetable has been moved up, so Lucy will have to meet with her trainers as often as possible to ensure she can accurately detect and alert Elise’s caretakers if there’s a problem.



 



 
Here’s Where We Could Use Your Help!

This is going to be an especially difficult year,  physically, emotionally, and financially for Elise and Lucy.  With ongoing CRPS, Adrenal Insufficiency, a slew of other secondary conditions and now Breast Cancer medical expensesThere is no way she will be able to manage on SSI/ Disability alone.  

We are asking for those who can share or donate to help us in any way possible, to help relieve some of the financial burden, so Elise can heal with peace of mind.

Breast Cancer and a mastectomy will mean a necessary replacement of bras and clothes, and many new medical supplies. Since Elise’s arms are the main source of her mobility, she will likely also require either a wheelchair or a modified standing walker, modified crutch (and eventually a different/modified mobility harness for Lucy) All of which insurance will not cover. The area she lives in has limited choices for Breast Cancer as it is, but with Lobular Carcinoma being rare, finding specialists is more difficult. She was very fortunate that there is a local doctor who specializes in it. However, they do no take her secondary insurance, so there will be co-pays. Due to her high risk status, she will need be sent to UCLA for the Plastic Surgeon and possibly other specialists. So she will have expenses related to travel as well; for both her and her caretaker. 

All who know Elise know that her first priority will be to continue to make sure Lucy gets everything she needs. We would ask for your help in ensuring that both Elise and Lucy get all the help they can get during these trying times.  


Other ways to donate:


Venmo:


donations for Lucy can also be paid directly to Kelly Sosa at www.theservicedogconnection.com

Lucy is seen by a great team at Mission Animal Hospital in SLO, and we are hoping to be able to work with them to an account for people to directly donate to Lucy’s care.

We will also be adding a PayPal link as well as a link to an Amazon shopping list.

(All team members will use this money to pay for Elise (and Lucy’s) medical equipment and bills.

 

Thank you all so much for your love and continued support of our friend!

This has been an especially difficult time especially considering all the advancemwbr she has made with Lucy this past year. Let’s try to help Elise out during this difficult, finically-burdensome time, so she can get back to improving and moving on with her life!



 

We will try to update throughout  this journey, but please follow Lucy and Elise’s Instagram account @leaning_on_lucy

For more information on all medical Conditions discussed on this campaign, please scroll to the bottom of the page

 

Please share to all your social media and friends/family!!! Every bit helps!!

Feel free to use our hashtags to help spread the word

#leaningonlucy #saveelisefromherboobs!#CrpsCANCERcortisolOHmy! #helpelisebeatcancer




—————-

(Start of previous Campaign- all still relevant on top of the new Cancer Diagnosis)

--------
Thank you to everyone taking the time to read this!  

In 2005, our friend, Elise de Groot was diagnosed with Complex Regional Pain Syndrome (CRPS-previously known as Causalgia and  RSD/Reflex Sympathetic Dystrophy). CRPS is an extremely painful, rare, neuro-inflammatory disorder, and one the two of us have in common with Elise. It is because of this common thread that we met, but it was through Elise's kindness, sense of humor and tenacity that we have become friends.  

We are writing this in the hopes to raise money to pay for Elise's own task-trained service dog, Lucy. Our friend works hard to help each of us and so many others in the CRPS community to live better, happier and more meaningful lives, despite our illnesses and/or disabilities. 
Now it is time to send her some much needed help to better her life!



A brief history:
Before Elise’s medical journey with CRPS began, she was a basketball player for Notre Dame De Namur University and graduated with a degree in Psychology. 
Her post-undergrad plans were to play basketball abroad, continue her studies in emergency trauma response and/or counseling and go on to get married and have a family of her own. Unfortunately, she suffered a serious injury to her foot half way through her senior season and was unable to go on and follow these dreams.  Elise had a severe foot injury that caused extreme pain and swelling. This injury went officially undiagnosed until she moved home after graduation, proper x-rays were taken and she was officially diagnosed with a Lis Franc Dislocation-Fracture. Elise was put in a cast and then scheduled for surgery. With surgery came more intractable pain, more swelling, severe lesions, and a host of other unusual symptoms for an injury, even a severe one.  The second surgery to remove the hardware only worsened the condition, and doctors soon diagnosed Elise with RSD/CRPS.


Just what is CRPS?
CRPS is a rare, extremely painful, chronic condition that typically affects an area of the body after an injury.  However, CRPS can be progressive, meaning it can spontaneously spread to anywhere on a person's body, even internal organs. CRPS causes an overactive and inappropriate nervous system response to trauma, causing extreme nervous system reactions—the worst being pain. However, because CRPS is a disease of the nervous system, it can affect anything the nervous system controls and/or regulates.

The pain is constant and severe, and involves a type of hypersensitivity, known as allodonyia, were even the slightest brush of something that shouldn't cause pain (the wind, pants, etc) can be excruciating.  The McGill Pain Questionnaire is a multidimensional assessment of pain and its impact on the patient. The McGill assessment classifies CRPS as the most painful chronic condition that is currently known (higher than kidney stones, childbirth, amputation of a finger without anesthesia, etc.). That level of pain is difficult enough, on its own, in one limb or body part. However, for many, people like Elise, it not only can spread to other parts of the body, but involves much more than just pain.


How does this effect Elise?
In Elise’s case, the CRPS quickly became systemic and spread to the majority of her body, in a relatively short amount of time. She experiences constant outbreaks of painful lesions on the affected areas. Additionally the CRPS has played a role in the development of several co-morbid disorders. The most severe being Adrenal Insufficiency; a disease that is life threatening, life changing and difficult to manage in of itself. The CRPS has spread to her bladder, abdomen, and parts of her rib cage, causing pain, diaphragm spasms, GI issues, and a neurogenic bladder. That latter two requiring her to use enemas and medications to empty her bowels and to self catheterize multiple times a day to empty her bladder. Due to the motor-neural dysfunction related to CRPS, Elise is unable to walk without the use of a mobility aid, and suffers frequent falls.

Elise is also impacted by other malfunctions of the nervous system; cognitive and memory issues, severe chronic fatigue, Dysautonomia, Myofacial Pain Syndrome, and Dystonia. In addition to the Depression and Anxiety that naturally come with this disease, the constant onslaught on her nervous system has left her battling Agoraphobia. And to top it off after an operation was done without proper anesthesia (no numbing at all!) to close an open wound on her CRPS foot  she has also had to cope with PTSD.  In addition to the physical, mental and emotional costs of this disease, it is financially draining. Elise and her family have spent everything they have fighting this disease. Many of the treatments that are helpful are not covered by insurance and the NDNU's catastrophic insurance has yet to pay. Elise and her family have had to fight both private and disability insurance every step of the way.

Life isn't easy for Elise. It is sure not the life she dreamed for herself at 22 years old, when this all started. However, life can get a whole lot better with the help of a task-trained mobility dog named Lucy!



Who is Lucy? And what is a task-trained mobility dog?

Meet Lucy and her trainer, Kelly:

The average cost of a fully-trained service dog costs upwards of $25,000-$40,000, and most organizations have a several year wait list even after funds are raised.  Luckily, there is a local company, Central Coast Dog Services, that works hard to provide fully trained custom service dogs for people like Elise at a fraction of the cost. 

Their head trainer, Kelly Sosa, started training an amazing two-year-old Black Labrador Retriever named Lucy a month ago for service dog work.  Once Lucy’s hip and elbow X-rays came back healthy enough for mobility assistance work, Kelly began custom training Lucy to meet Elise’s needs. 

Lucy is being task- trained to pick up dropped objects, open doors, retrieve the the phone, a cane and even her walker! Lucy will provide deep pressure therapy to Elise’s legs when she experiences tremors and spasms, block people from getting too close and causing Elise pain from brushing up against her, help with balance and giving physical feedback for Elise to know where her legs are in relation to her body. Lucy will be trained to alert her if her legs are facing the wrong direction and/or she is in danger of falling. If she begins to fall, Lucy will be trained to provide a counter balance to help Elise stabilize herself. In the event that a fall can not be prevented, and Elise can not use objects around her to get back up, Lucy will act as Elise’s brace dog to help her get back up.  

Beyond the specific tasks, Lucy will provide Elise with confidence to go out, do more things and be more mobile!  And perhaps, most importantly, Lucy will be a source of love and joy for Elise!



Sounds great, but what will this cost?
The projected cost of Lucy, including training, vet care, and supplies over the next two years,  is roughly $12,552.94. This is much cheaper than getting a service dog from most organizations. However, it is still more than Elise and her family can handle on their own. 

Here is the  breakdown of the projected costs for Lucy:

Adoption Fee - $200
Service Dog Finding Fee - $300
Initial Board/Training Cost - 10wks = $4,550
Training Sessions with Elise - twice a week for 10wks = $900
Follow-Up Refresher Training Cost - 10hr sessions = $450
Food - $40 per month x 24months = $960
Treats - $20 per month x 24months = $480
Dog Bed - $33
Food - $40 per month x 24months = $960
Crate - $148 on Chewy.com 
Leash - $15
Collar - $15 
Shampoo - $16 per bottle
Furminator Brush - $46
XL Gentle Leader - $30
Vest - $110
Bracing Harness - $165
Saddle bag pack: $34.99
Saddle bag patch: “emergency medication inside”: $14.95
Dog Tags - $15
Poop Bags - $6 per month x 24 months = $144
X-Rays of hips and elbows- $500
NexGuard - $22 per month x24 months = $528
Heartguard - $12 per month x24 months = $288
New patient Vet visit: $75
Vet Wellness Check: $75
Removal of  broken tooth: $1500

PROJECTED TOTAL:  $12,552.94

Why contribute to this GoFundMe?
Elise is one of the most determined and hardworking people we know. If you know anything about Elise and her life the past 14 years, it is that she has done everything she reasonably can to take care of and heal her mind and body. She has  tried nearly every treatment- holistic and traditional, that are available to fight the CRPS and other health conditions she has. Elise  works hard every day to maintain as much function as possible and believes if she keeps working hard, her body will heal. Lucy can help Elise achieve this!!

Elise spends what energy she has volunteering for a wonderful children’s program, Tri-Ling Kids.  A small community program, where she is adored and appreciated by the parents, teachers and students. Elise pours her heart into supporting people like us; people in the CRPS community who also struggle with this horrible disease. She shares her experiences and the research and knowledge she's gained over the years to help others find their own path to healing.  In order to support friends and family, she pushes herself past what most people even without this illness would do. Most importantly, through it all and with limited support, she has never given up and encourages others like us to keep pushing—that no matter what our circumstances, we can all find happiness and live a life of purpose.



How can you help?

We are asking for you to support Elise, like she supports others, by contributing what you can to this GoFundMe. Any amount, no matter how small will help!! 

We can't do anything to make up for the years she's lost to CRPS and all its complications, but by helping her pay for and train Lucy, we can make a huge difference and give Elise true hope for a brighter future! 



Thank you!!!!!
Thank you for taking the time to read this and for doing what you can to help Elise and Lucy become a team!!!

With love and appreciation,
Jamie and Jennifer



***We are hoping to reach our goal, but would love to surpass it! Any additional funds will be placed in a Special Needs Trust Account for Elise. These funds will then go to pay for future vet care, supplies, additional task-training for Lucy, and/or any other future service dog needs.




Want more Information?

If you are interested in learning more about Elise & Lucy or CentralCoast Dog Services, feel free to reach out!    www.centralcoastdogservices.com

For more information on CRPS:

CRPS 101: https://www.youtube.com/watch?   v=v66YHyZNPUE

https://www.researchgate.net/publication/276490415_Systemic_Complications_of_Complex_Regional_Pain_Syndrome

https://www.ninds.nih.gov/Disorders/Patient-Caregiver- Education/Fact-Sheets/Complex-Regional-Pain-Syndrome-Fact-Sheet


For more information on mobility and brace dogs and the amazing, life changing things they can do:
https://www.anythingpawsable.com/brace-mobility-support-dogs-complete-guide/



Invasive Lobular Carcinomahttps://www.breastcancer.org/symptoms/types/ilc

Blog posts by well know CRPS warrior who has also battles Breast Cancer. A different type, but a lot of insight into the challenges Elise will face.

https://www.google.com/amp/s/www.painnewsnetwork.org/stories/2020/6/29/playing-with-fire%3fformat=amp


 GoFundMe Guarantee

Only donations on our platform are protected by the GoFundMe Guarantee. Learn more.

  • Claire Vaccaro 
    • $25 
    • 9 mos
  • Karin Stortz 
    • $50 
    • 11 mos
  • Anonymous 
    • $50 
    • 11 mos
  • Matthew Adams 
    • $25 
    • 11 mos
  • Shannon Lucas 
    • $250 
    • 11 mos
See all

Fundraising team: Team Elise and Lucy (5)

Team Train Lucy For Elise! 
Organizer
Raised $1,025 from 6 donations
San Luis Obispo, CA
Kelly Sosa 
Beneficiary
Lydia Keema 
Team member
Raised $20 from 1 donation
James T Russell 
Team member
Jennifer Scinto 
Team member