The Willard Family Fund

 
Raised: $4,345.00
Goal: $20,000.00
 
 
 

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Jennifer Willard

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As my husband and I look back over fourteen years of marriage and our older daughter is now thirteen, we have a blur of emotions associated with many trials and overwhelming burdens for... more

 
 
 
 
 
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Updated posted by Jennifer Willard 1 day ago

Most people don't ever face the trials and tribulations that my family face on a daily basis. I can honestly say that I never imagined being a mom and a wife could be so incredibly hard. I have had my heart felt like it has been ripped from chest, felt like my lungs were being squeezed until I was gasping for breath. As a mom we are giving children to love, nourish, and prepare them for life. We are to teach them about God and how to lead a christian life. Much of you know about Breanna's medical struggles, the hell that she has dealt with since she came into this world. The times we almost lost her.. She faces painful surgeries and recovery times almost yearly She deals with looks, comments from people on a daily basis.. She know she looks different when she looks in the mirror, but we tell her every day how beautiful she is.. She is a girl and we have all been through that "awkward stage" but imagine going through that as my daughter.. with one arm noticeable different than the other, with facial deformities.. How would you feel? This prosthetic eye that we just had made last year, was clearly not made and is causing problems with her eye socket.. She is going to have to have another one made and the cost is staggering.. The price 3500-4300 depending on the complexity of the eye. They will file insurance as a courtesy but we are expected to pay the full amount. I have been on the phone all morning with our insurance company trying to figure things out. It just makes me sick.. that first I can not give me daughter this.. second that there are only three people in NC that do this, and third the exorbitant price they charge.. I as a mother am supposed to provide for my child, but how can I with this... Doesn't my child deserve to be happy too...

Then move on to my role as a wife... I never imagined we would be dealing with something that could take my husband's life. Never thought that a brain tumor could take so much away. He is a man.. God gave men certain roles, but this as taken much of them away. I know he hates that he can no longer drive, that he has no short term memory, that he gets easily fatigue, that he takes several medications a day, that these daily seizures are slowly killing off brain cells, that every time we get an MRI we hold our breath that his tumor remains stable.. and now we have the added worry about his Chemotherapy that he took, that later in life he does not face added complications from this and the word radiation keeps rearing its ugly head.

I lay awake many nights with all this swirling around in my head.. I just want to have a "normal" life with "normal" problems.. Want to take my kids on vacation, be able to go through one day with out having to get the endless supply of medical bills that come in the mail, not have to make my rounds of calls to doctors, insurance companies, and pharmacies.. I wonder about all the "what ifs"..

 
 
 

Updated posted by Jennifer Willard 4 days ago

What a long week.... I hate to be such a debbie downer, but come on!! This dang rain cloud that seems to linger over our house needs to move on. We had to get two new tires for the van, which is life I know, but wait that was just Monday.. Next we had to get 3 of Roy's anti-seizure meds which were a couple hundred dollars, he has two other medications we are waiting approval through the insurance company, and now the doctors want to order a sleep study and possible cpap machine. We went to one of his doctors on Thursday, waited 3 hours to be seen, and when we finally were, that was for about 15 mins or so. His vision was good, but there is some growth on his eye they are going to watch and if it gets any bigger will have to be removed. Then today I took Breanna to one of her doctors because of all the issues she keeps having with her eye and there is something going on with her eye socket. They want to put her on steroids and antibiotics drops for at least a month to see if it will "calm down her eye socket". We have to go back in a month to see her. She said more than likely a new prosthetic will have to be made which cost a small fortune.. I am obviously not taking her back around here because she has had 3 made within the last few years and they are not "working" so I found one in Winston-Salem but I have know clue on the cost. I have to call and check on that Monday. The doctor also said she will probably need surgery for a drain. This means we will have to see an ocular plastic eye surgeon, as you know nothing is ever simple with Breanna's case. I still have not called her arm doctor because of everything else that has been going through but I need to do that soon. She has just now fully recovered from this last surgery. I am not sure how much more she can handle.. she is still a child and carries so much on her shoulders. Well then we get home today and our refrigerator is not working. So we have everything in coolers, I just don't know what to do.. I feel like crying. I constantly have migraines, so bad it makes me nauseous, my right eye feels as though it is going to pop out and my neck just throbs. I made an appointment for Monday for that.

 
 
 

Updated posted by Jennifer Willard 12 days ago

Well it has been a little over two months since Roy had his surgery, and I wish I could say things have improved, but sadly they are a little worse. His seizures have returned and they have become a daily occurrence. They are still centralized to the left side and only last from a few moments to a few minutes. He is back at work, since they will know longer accommodate him to work from home. He uses his cane to get around most places, but does have his wheelchair as a back-up. We have been in contact with his doctors and w His seizures are coming from his tumor, and since the area they are coming from is inoperable, we are left with really not many options. The device they had mentioned before, would most likely not work with him, because your use of MRI's is limited and his tumor needs to be monitored.
They had mentioned radiation therapy again, but it would be such a large dosage over a large portion of his brain and that poses many many side effects. Also if we went that route, he could not get radiation again for 10 years. Right now Roy's tumor appears to be stable (we will know for sure in May when his next MRI is scheduled) and we are not sure we want to use our last card now. So if he went for radiation to see if that would stop the seizures and his tumor changed we could not do anything, because he maxed out on chemotherapy and he would have used his radiation therapy. Also there is no guarantee that it would work.
It is all so frustrating!! It kills me to see this disease slowly take over his body and take so much from him.

 
 
 
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Created by Jennifer Willard on March 13, 2013

As my husband and I look back over fourteen years of marriage and our older daughter is now thirteen, we have a blur of emotions associated with many trials and overwhelming burdens for the future. As a family, we have been through so much. It seems as if never-ending challenges have come our way. We pass through one trial; another more serious one presents itself, and testing comes once again.

We have two daughters, Breanna and Cheyenne. Breanna was born with a genetic disorder called Neurofibromatosis. At just eleven days old, her first surgery was performed; then she had another at two months and yet another a few months later. This would become the cycle her first year of life. Initially, doctors thought they were treating pediatric glaucoma because her left eye was noticeably larger and bulging. Despite treatments, something still wasn’t right, so Breanna had her first MRI when she was still a baby. She was diagnosed with a plexiform neurofibroma tumor that had grown invasively throughout the right side of her face—affecting soft tissues, her cheek, facial bones, nasal, and sinus cavities.

As we waited to find a doctor that could handle her case, we noticed that her left arm appeared to bow, and it was ultimately diagnosed as psuedoarthrosis of the ulna and radius. Finally, in September of 2003, after medical evaluations in three different states, a team of doctors performed a ten-hour surgery on our three year old. Because the tumor had invaded most of her facial bones, she had to have facial reconstructive surgery, a craniotomy to remove some of the tumor, and she lost her right eye. Though recovery initially appeared to go well, she developed a serious post-op infection as well as a brain abscess and had to have emergency surgery (another craniotomy). This time she had to spend over a month in the hospital while doctors battled to control the infection; we came very close to losing her.
Five months after her first craniotomy in February of 2004, surgery was performed on her arm transforming her left forearm into one bone and placed a rod into it to reinforce the bone. This worked until just ten months later when, while playing with her sister, she fell and broke her left arm. The doctors performed another surgery, but unfortunately this time the bone just wouldn't heal. So in 2007, a free-fibula transplant was undertaken by another highly specialized team of doctors. The surgery lasted twelve hours, and Breanna was in the PICU for over a week. It was very painful, and she cried all the time.

Over the years, this cycle of surgeries to her face and arm have continued for Breanna. Every eighteen months or so a new prosthetic eye must be made and inserted to accommodate her eye socket as it grows and changes. Doctors have to monitor her closely as they plan and prepare for how this tumor will affect her the rest of her life.

Unfortunately, our story of challenges and difficulty doesn't end there. In September of 2010, out of the blue, my husband suffered a grand mal seizure. The next day he underwent emergency brain surgery. The doctors found a very large tumor; because of its location, the surgeons were only able to remove enough for a biopsy.


His tumor is known as oligodendroglioma grade 2. He completed eighteen months of chemotherapy in hopes of minimizing the tumor’s growth. Additionally, he adheres to a strict regime of several different high-dose anti-seizure medicines on a daily basis. Earlier this year, after cycling off the chemotherapy for several months, he had a significant setback and was placed in the hospital for several weeks
Often, he was having seizures every five minutes. There was no choice but to place him back on chemotherapy. After 6 months of chemotherapy he was taking back off while the doctors search for other options.

My husband is the breadwinner of our family, and as you can imagine with his being out of work for several months, the financial strain has only added to our already heavy emotional burden. Medical bills as well as transportation costs for travel to and from doctors and hospitals for two members of our family with serious long-term illnesses are staggering. Add to that the “ordinary” challenges of life such as car repairs and home maintenance, and stress levels soar. It is my prayer that as a wife and mother I would be able to homeschool my children and minister to the emotional and physical comforts of my family as we walk this difficult path. What a blessing it would be to have some relief when I sit down late at night, alone, to sift through bills that are well beyond our capacity to address.




**** I do update often on my carepages website http://www.carepages.com/carepages/WillardFamily ****
 
 
 
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Recent Donations (62)

$4,345 raised by 62 people in 13 months.

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Stefanie Hansen

1 day ago

 
 

Continued prayers and thoughts are always with you.

 

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Anonymous

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$100.00

sandi long

4 days ago

 
 

Loads of love and hugs...

 

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Anonymous

27 days ago

 

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Seema Sondhi

1 month ago

 
 

Thinking of you all!

 

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Trudy Rundle

1 month ago

 
 

Keep strong and continue to trust in the Lord. He is faithful.

 

$130.00

Gretchen Eck

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Praying!

 

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