Help Jenny Get Her Life Back
Jenny is a very loved, happy, strong and courageous person, mother and wife, who has been fighting a battle with a rare form of benign brain and spinal tumors for almost 20 years.
Around 20 years ago Jenny began experiencing problems that were very alarming.
Headaches, flashes of light and nausea were frightening and called for swift action and surgery to save her life.
She was found to have brain and spinal tumors.
At the time, no one really could identify them as they were so rare and it took quite awhile just to figure out what she had.
After 6 Weeks of being told the tumors were cancerous, the news came back, the tumors were benign Choroid plexus papilloma tumors but still very dangerous and had spread in an aggressive manner.
Choroid plexus papilloma tumors are rare, and very dangerous benign tumors arising from the lining of the spinal canal and the membranes that line the inside of the brain and produce spinal fluid.
The first surgeries were for a tumor in her cerebellum that was causing tremendous pressure on her brain and endangering her eyesight and a week later for 3 spinal tumors that needed to be surgically removed to prevent paralysis, interference with nerve signals and pain from pressure on the nerves. One tumor in her lower back was found to be inoperable because it was impossible to get out without serious nerve damage.
The cerebellum coordinates voluntary movements such as posture, balance, coordination, and speech. The tumor was causing the tremendous pressure in her brain.
The surgeries were successful, Jenny's recovery was painful and we were told they were cancerous and that she would be having chemotherapy. After 6 weeks of fearing the worst, the tumors were found to be benign. We opted out of radiation treatments and chemotherapy and she was monitored for 3 years with no sign of the return of any tumor.
After 6 weeks of fearing the worst, the tumors were found to be benign. We opted out of radiation treatments and chemotherapy and she was monitored for 3 years with no sign of the return of any tumor.
For the next 16 years, she lived free of symptoms and was happy and pain-free.
Then, four years ago she began stumbling, falling down and experiencing drop foot, a condition where the right foot would not point upward and she was dragging her leg and foot.
The falls caused extensive spinal deterioration and her spine was collapsing in on tumors we had no idea were there.
Her legs were showing signs of distress and nerve damage, very severe back pain and she had to start using walking aids to get around.
While sitting on a heating pad for hours to relieve her back pain after work,
she developed what is called a pressure sore from not being able to feel it was burning her.
We had no idea what a pressure sore was, how dangerous a pressure sore could be and how fast they can turn into a life-threatening situation because of infection. Hindsight is 20/20 and the pressure sore should have been healed up before any surgeries were done.
After an emergency MRI, radiologists discovered the tumors in her brain and spine that we thought were gone forever were back with a vengeance and about to change Jennys life forever.
After going back to her original neurosurgeon the only options that were given was a shunt and radiation, which have serious side effects
Jenny had surgery Oct 2012 to remove most of the spinal tumors. The inoperable tumor was still there and still inoperable. The brain tumors were left since they are not causing symptoms or problems.
She had a rough go of it and things went wrong.
Complications from spinal surgery and a massive infection (from a pressure sore caused by sitting on a heating pad to relieve pain before surgery), led to severe nerve damage and paralysis in both legs.
This put her in bed for the last 3+ years in massive amounts of pain from scarring, nerve damage and the inoperable tumor pushing on the nerves in her spine.
The surgery to repair the damage done from the infection is called a flap surgery.
A vascular surgeon cleaned out the wound and left a hole the size of a football. She was on a wound vac for two weeks and then had her flap surgery.
Extremely weak because of extreme nausea and weight loss, Jenny came home to a very bad situation. An Inexperienced family of caregivers and a very poor nursing service. Which we dropped. She was on a clinitron bed which floated her on sand with air blowing through it.
Changing dressings and daily care was very challenging.
Slow healing of the flap surgery sent Jenny to the ER where we received a referral to the wound care center at St Joesph Hospital.
This was our first glimpse of true professionalism and real care since Jenny was sent home.
58 round trips by ambulance for hyperbaric treatments and as I recall 12 trips by ambulance to see the wound care doctor.
The bills were piling up and very large.
Two years of learning the hard way how to take care of Jenny with very little help.
Months of very expensive in home Physical therapy and occupational therapy did some good and we met some of the most caring people we have ever known.
But it was still not enough. The extreme pain stopped Jenny's progress.
She has required caregivers, her husband Roy Barnett and children Amber and Chris Barnett mostly, to be present 24/7 for the last three+ years. With almost no caregiving help for the first two years.
Jenny has had physical therapy and occupational therapy from the finest therapists available.
She has made progress, but the pain from the inoperable tumor has hindered that progress tremendously.
An attempt at a solution to the most of the pain that has been bringing her progress to a stop has been carried out.
But it did not help, in fact, she experience agonizing muscle spasms from the procedure.
Jenny underwent a radiofrequency denervation procedure to calm the pain from the pressure on the nerves.
This was hoped to enable Jenny to pursue what she needs to do to become as capable as possible and get her life back but, in fact, caused far more problems with muscle spasms causing big pain for her.
Her husband Roy with the help of their children has been a 24/7 caregiver to Jenny with much-needed help from their children.
Roy has not been able to go to work because Jenny has needed his help, the financial expenses from medical bills, insurance costs, deductibles, and co-pays have been immense, along with the costs of daily living.
Thousands of dollars in medical bills have been piling up and there are more coming.
Expenses for a person with paraplegia are enormous, according to the Christopher and Dana Reeve Foundation, paralysis resource center, average $66,106 a year.
The goal for this fundraiser was originally $20,154. To cover Jenny's major expenses for one year and pay off her medical bills for her care.
The need for care does not stop, the expenses are ongoing and we have decided to extend the fundraiser out over the next 12 months to care for Jenny.
You can find a breakdown of those expenses here by following this link.
With the help of Roy’s Mom and Sister, we have been getting along with much less, but at a cost of Jenny’s care not being what it should be to keep her progressing at the rate that she should and severe financial stress on the whole family.
Jenny needs extensive modifications to the house, a van a new bed and special equipment (Breakdown of those are listed also) https://drive.google.com/file/d/0B3fCN51Agrt4aXhLY0hwYzFCYk0/view?usp=sharing
Advanced physical therapy approaches that Jenny needs are very expensive and insurance companies put a very low priority on it.
Only 24 visits are allowed by her insurance at this time.
At 45 mins for each visit very little seems to be accomplished except for practice getting in and out of a car.
She dreams of independence, but she needs the financial capability to pay for the special out of the ordinary care she desperately needs.
Jenny has a nursing service which supplies a nurse and some supplies, but only the minimum needed with no extras for respite care or help around the house.
So any much-needed help for relief for the family will have to be out of pocket and only available through the fundraiser.
The upcoming costs of insurance, deductibles, supplies and the costs of advanced therapy with a major disability are enormous.
She needs allot more specialized treatment from neurologists, digestive experts, physical therapy doctors, physical therapists and occupational therapists.
Membership dues at the YMCA to keep her active. The specialized equipment there is absolutely needed.
Jenny is upset by the financial pressure and the lack of progress that she knows she should be making.
She wants her life back.
She wants the ability to do more with her life.
In Sept of 2014, her husband Roy and their daughter were in a rear end collision and another in Sept 2015, just as they were really very close to finishing treatment for the first whiplash.
Severe whiplash has put both of them in pain which makes it very hard to give Jenny the full attention she needs.
More help from nurses and Jenny's caregiver is very much needed to keep Jenny progressing.
Jenny's basic needs are met, but she is not getting the extra attention and activities needed to make the progress she needs.
The challenges of paralysis are overwhelming for anyone and Jenny has exhibited a tremendous amount of courage through this whole battle.
She has been held back in her progress and has felt the pain and stress from the financial pressure.
Her life and her families lives have been put on hold. For how long we don't know.
Jenny is ready to move on, put the pain behind her and live life to the fullest that she can and her family wants a normal life again.
The success of this fundraiser through your generous gifts will change Jennys life in a tremendous way for the better and give her the opportunity to live a much better life.
And you can help.
We need good people to step up and help.
Jenny is now engaged in the physical therapy and occupational therapy needed to overcome the challenges ahead to gain more independence. It has been an extreme challenge for her. This is provided by students learning their skills at a nearby university.
A new power wheelchair for her independence is here and paid for by insurance last year and needs service because Jenny has not been able to use it because she has no van and the batteries have gone dead.
Right now covering the monthly expenses and paying down medical bills has stopped us from purchasing a van which she really needs because car transfers are really hard on her.
A hoped-for solution to the most of the pain that has been bringing her progress to a stop has been carried out. But it did not help in fact she experience agonizing muscle spasms from the procedure.
Jenny underwent a radiofrequency denervation procedure soon to calm the pain from the pressure on the nerves.
This was hoped to enable Jenny to pursue what she needs to do to become as capable as possible and get her life back but caused painful muscle spasms.
It turned out to be a setback. Pain medication is helping somewhat but is not a good solution.
Being free from pain is just the start.
Your generosity can be the means to overcome the financial burdens and obtain the equipment and supplies needed to make her dream of a much better life a reality.
How much you help is up to you, there is great power in numbers.
Thank you so much!
Please click the Donate Now button here on this page follow the easy steps to donate to help Jenny get her life back.
I know not everyone is comfortable with giving money over the internet.
You can also
Mail a check or money order to our house made out to:
Roy Barnett ( Jenny's Husband)
11016 8th Ave Ct S
Tacoma Wash 98444
Thank you so much from Jenny and her family.
Please help us get the word out
by sharing Jenny's fundraising page on your Facebook page, website, by email or any other way you feel comfortable with.
Here is the link to share.
Thank you so much,