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.
We talked with Breanna's surgeons and have her next surgery scheduled for the end of April. This is going to be a big surgery.
They are going to use a previous incision (the will be cutting her across her scalp from ear to ear, picture a headband) and will pull down her skin to expose her forehead. They will then debulk any plexiform, place the custom implant on the left temple and try and lift her eyebrow. Next they will use the incision by her right ear.. From this they will again debulk any plexiform, place the implant to fill in the divot, tack up her right cheek, try again to lift her nostril and debulk the plexiform that has grown there.
This is a very complicated surgery because Breanna's anatomy is not 'normal'. These surgeries tend to bleed a lot. There is a increased risk of infection, and because of location of the surgery there are several important facial nerves. She could lose function of several of those.
Please pray for my daughter. My beautiful, strong, amazing daughter!!
Roy is still having several seizures a day. They are getting longer and more intense and this worries me. Please pray for him. Pray for God's healing and his comfort.
I just wanted to crawl into bed when we finally made it home. Our emotions have been all over the place and Thursday was no exception.
First we find out his oncologist is leaving the end of April, not sure who is taking her place.
Then the doctor starts her evaluation..
"Any new symptoms? I'm going to give you three words to remember. Ball, chair, green. Squeeze my hand. How many fingers am I holding up? What am I pointing to? What's 100 -7? 93-7? 86-6? What was the three words I ask you to remember?"
After she finished this, she pulls up his MRI. My stomach is in knots, it gets this way every two months.
They are noticing more flares than before. The flares are the large white area around his tumor. They at this point don't know if his increase in seizures are causing it or if the tumor cells themselves are changing.
His symptoms, more seizures and headaches, indicate tumor change..
They want to give him two more months on temadar and then maybe talk about a different chemotherapy(pcv) or radiation. His oncologist said since his tumor is still classified as a lower grade tumor insurance does not typically cover other chemotherapy forms, they would rather do radiation. That is not something we want to do, given the fact that
1st- it would be pretty much his whole right brain.
2nd- there are a lot of side effects
3rd- that would be our one and only time to do radiation, so if his tumor becomes a higher grade we would be out of options.
We then met with his neurologist and told him our concerns and he came up with this plan.
He wants to admit Roy to the hospital for a few days, play around with his seizure medication and see if taking him off one that he has been on for the last six years and replacing it with a different one, might help. The last time they did something like this Roy was having seizures every few minutes.
Now Roy is one their more complex cases. He is currently on four different anti convulsive medications along with his VNS. He has tried nearly every seizure med available and none seem to work, or they have what is called a honeymoon period.
His neurologist is thinking, if we can get even a small decrease in seizures then maybe his next scan will look a little better and it will have been the seizures causing the flares and not the tumor changing.
We also don't want to jump into anything with the changing of his oncologist.
So he agreed to try the few days in the hospital and hope and pray that maybe this will work, because every day he has a headache, more and more seizures, and his left side pretty much stays numb. We are waiting to hear what dates they have available. They were thinking soon.
Now on to Breanna. We are meeting with her doctors this Thursday to discuss and plan her next surgery, it should be some time in April.
Cheyenne also has some doctors appointments coming up on Friday and a MRI Saturday to look into all the headaches she has been having.
Please pray for our family as we try and deal with all that is on our plates.
Its so hard watching her go through all this and know that she still has a long road ahead of her.
Chemo seems to be taking its toll on Roy this time. Its a fickle character, some days he is fine and others he finds it hard to get out of bed.
His seizures have not improved, in fact I would almost say they have gotten worse, especially if he over tires himself.
Next week he sees his multitudes of doctors, has his MRI, and labs. This is almost like a recurrent nightmare we can never escape. It is a unimaginably burden we deal with, the fear of every two months having to see a doctor that can change your life in a moment. We never know whether she will say his tumor is stable or growing. The endless amount of drugs he takes just to keep his body limited to the dozen seizures he deals with on a daily basis.
I hate it.. I hate that we have hit a wall and the doctors really don't know what else to do for his seizures. I hate that he has this invader in his brain that could end his life and take him from us. I hate that there is no cure and that it is inoperable. I hate that my daughter can't seem to get a reprieve, that her whole life has been a struggle, that she had had to ensure one surgery after another. I hate that the worrying keeps me up at night. That I am always waiting for the other shoe to drop.
I hate that I am so angry at God, that he has put not one, not two, but three family members with chronic illness on my shoulder and no matter how much I call out to him, my prayers seem to go unanswered.
Roy has been doing better this week with the nausea, but I'm sad to say his seizures have gotten worse. In a few weeks, his has his bi-monthly MRI, sees his oncologist, labs, and chemo appointments. If you could, please say a prayer for him too.
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!