Help for the Willard Family
I set up this account to help ease some of our financial burdens that come with dealing with multiple family members with chronic illnesses.
My husband was the sole bread winner of our family but was diagnosed with an inoperable brain tumor in 2010 and since then he has lost his job and is now totally disabled due to his daily seizures , the brain tumor, and the effects they along with all the medication he has to take have on his body. He has already been through several rounds ofchemotherapy but sadly there is currently no cure.
My oldest daughter has a rare genetic disorder requires several specialist to follow her care. This has caused the loss of her right eye, facial and bone deformity, and took parts of her left arm bones. She had endured dozens of surgeries in her young life.
She has a very long and difficult road ahead of her.
My family has had its share of burdens and any help will be appreciated.
Last week, we talked with Roys neurosurgeon about his surgery. After reviewing all the data he felt that the surgery he was proposing wasn't the best option for Roy. He referred him to another neurosurgeon surgeon that specializes in tumor surgery.
We met with that surgeon today and the surgery they have presented us with is removing a portion of the tumor. It poses many risks and the outcome is not the greatest. He would have up to a 50% chance of reducing his seizures. He would NOT be seizure free, but they could be potentially less than he is having now. There is just no telling what effect it will have on his seizures.
His seizures have become so frequent and have intensified so much that we are not left with many options.
Some of the risks involved include bleeding and swelling in the brain, increased seizures, infection, loss of vision of the left side of each eye. more left side weakness.....
They can do surgery as early as next week, but we will probably try and schedule it out a few weeks.
This surgery is NOT a cure, they will never be able to remove the whole tumor. We have sent records and spoken with some of the best neurosurgeons in the country and they all agree that his tumor has just invaded too much of the brain tissue. The only reason why this surgery is even an option is his seizures and that we have exhausted all of our options.
Please continue to pray for us.
She is such an amazing young lady. I am so proud of her. She is a champ. If you count all her surgeries over the years, I bet she is rounding near three dozen.
We finally heard from Roy neurosurgeon, he wants to meet with us next month, then possible surgery in April.
There is a lot of miscommunication about this surgery, this surgery is not a "heal all, everything is going to be perfect" surgery. It is basically our last step. They wanted to do this surgery a few years ago, but the information they obtained from the readings indicated that it wasn't safe. Technology has advanced since then and this time they were able to place multiple grids through small holes intracranially instead of one large grid draped over the brain. After reviewing the new data, they determined, along with his increased symptoms (seizures, headaches, left side weakness and decreased sensitivity)that surgery would be a better option. now We will talk in great detail with his surgeon, but remember there are lots of risk with this. They are operating on his brain.
His tumor is quite large, involving three lobes. It encases much of the right hemisphere of his brain. They are going to go in and safely remove as much of the tumor as they can. They will never be able to get it all, and afterward, he will have to go back on chemotherapy. As I said before he has a very large wedge-shaped tumor. The doctors are hoping, that this will help alleviate some or most of his seizures. HOPING, not positive, not it will, but HOPING. Hoping is a big word, that can have multiple meanings. There are plenty of risks involved. It is not a simple procedure. There were many steps involved before we even got to this point. I will have my list of questions available when we meet with the surgeon again, to go over these latest test and finalize a surgical date.
But that is where we are right now. Hopefully, Breanna should be all healed and we should have some answers with Cheyenne before Roy has his surgery.
Breanna had her surgery Monday. It was a long, long day. I think they started at around 11:30 and we didn't see her until around 6 that night. The surgery was very involved. They tried to get as much of the plexiform neurofibroma as they could, but it has engulfed her whole right side of her face. It has taken over soft tissues, sinus cavity, wrapped around her facial nerves. It is even in her jaw bones. This has just taken control and shows no signs of stopping. These surgeries are just temporary fixes until a cure is found, it's like putting a bandaid on a bullet wound.
There needs to be more awareness for Neurofibromatosis, half the time I know more than the medical providers. That is why it is so hard to find knowledgeable doctors. I am so thankful for her doctors she has now. They understand this horrible disorder.
Neurofibromatosis is a genetic disorder, that can cause many complications. It is a chronic disease that has no cure and can affect you the rest of your life. Many suffer from some sort of learning disability, some have scoliosis, others can have disorders of the bones which more than often lead to amputation. Some suffer from the disfiguring plexiform that destroy normal tissues.
Today Breanna is very swollen, more so than she has been in the past. Her face is at least 3x its normal size and she is slowly starting to bruise. Her pain is under control and she has been resting which is good.
We are still waiting to hear from Roy's doctors to hear what their next step is when they might want to do surgery. He is still walking with the cane and still having a multitude of seizures a day.
Please pray specifically for her. Pray that these tumors stop growing or at least slow down some. Pray that her swelling gets better. Pray for Roy, that they are able to stop his seizures, or even lessen the frequency of them. That he gets his strength and feeling back on his left side. Pray for Cheyenne that they are able to get some answers to her swallowing issues, and pray for me. I have so much on my plate, pray the God gives me the strength, the answers I need to make the right decisions, and the financial ability to support my family
Jennifer, My heart breaks for you and your family. I often wonder why things are the way they are but then i remember that God is God and though we don't understand many times, He does. The Bible says, " come to me all who are weary and burdened'...i am praying specifically for you to feel comforted at this very moment if only for a second, to a safe refuge of our Most High.
Jennifer, I have not met you in real life, but I've been following your gofundme for quite a while and pray for you and your family. I wondered if you have heard of or seen The Truth About Cancer video series. It has so much good information, not just about cancer treatment and prevention, but how to make good choices about what you eat and are exposed to that will help your immune system fight off the many things you have described here. I will continue to pray that you get the information you need the wisdom to process that information the way God wants you to, and the strength to obey God in however he is leading you. Even though I don't know you, my heart goes out to you as you go through all of these trials. Feel free to contact me if you do not know how to find the video series. I think I first found you through Spice-line?
Breanna is such a delight - I have enjoyed getting to know her in small group on Sunday mornings and our family is praying for her and for your whole family. Praying for healing, provision, peace and faith - praying, too, that God will bring encouragement in these very difficult days.
We are praying for you and your family!