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.
It has been a frustrating week.
We actually had a new doctor come by today and agree with us. She reached out to Cheyenne's neurologist and they both agreed on a plan. Neither agree with the previous doctors diagnosis.
They are starting her on a new medication and hopefully releasing her tomorrow, she will be seen by her neurolgist next week and he will be running his own tests. He is working on getting those ordered .
In the meantime, Cheyenne will go home with a wheelchair and walker.
We also have Breanna's surgery coming up that first part of July.
Roy has had no improvement on his vision and still having seizures.
It just seems endless. We are tired. We would just like a break for once.
How can one family have so much stuff on their plate?
Please pray that they are able to get some answers and find a solution.
Brain tumors are complex, they don't care who they hurt or what they take from you. Most of the time they are silent until a symptom appears. They range in locations, severity, and symptoms. You have Grade I, Grade II, Grade III, and Grade IV. Some are malignant and some are not.
Looking at Roy, most would not think he has a brain tumor. Looks can be deceiving. His tumor is an Oligodendroglioma. Most don't understand what all a brain tumor can take from you. Just because it is slow growing lower grade glioma, does not mean it is not dangerous. It is still harmful. That is why he has been on chemotherapy not once, not twice, but three different times. Each time ranging from six months to eighteen months. Life expectancy is all over the map. Depending on the location of your tumor, your symptoms, and the rate at which it grows. That is why they monitor Roy so close. It's like a ticking bomb inside his head. The stress he endures every day, not knowing from day to day what is happening inside his head. Every two to three months he has to go to the Oncologist to see if this is the time they are going to tell him it is growing or changing. We are always holding our breath.
They were not able to safely remove all of his tumor, they just took a potion out hoping that it would help with his seizures. These tumors have a mind of their own, they don't care about you.
Roy's last MRI was .... disturbing.. The doctors are not sure what to think of it. The radiologist thinks there may be a concern for reoccurrence, but his neuro-oncologist and neurosurgeon are hoping that it is just his brain trying to heal after surgery. That is a huge weight we are carrying until his next scan in July.
His loss of vision in the outer half of both eyes has not returned, he has double vision, still experience smaller seizures, some short-term memory loss, and fatigue.
Please continue to pray for our family as we "watch and wait". We are keeping trying to keep our focus on God because he is ultimately in control.
Roy is still dealing with the loss of half his visual field but now he has a new symptom. He is having double vision in the part he can see. This causes him to have almost constant headaches.
He is still experiencing daily seizures but not as many of the "larger" ones as before the surgery.
Brain surgery is a difficult surgery to recover from, on the outside you may look fine but on the inside your body and brain are still recovering.
He still experiences extreme fatigue, weakness, headaches. His team of doctors are still monitoring his recovery process, with more appointments in the next weeks to months. They want to give his brain another month to heal before they repeat a MRI and at that time will evaluate the next steps. They will take in to consideration his current symptoms ,MRI scans, and then discuss how they want to proceed. His last MRI was a little unsettling, but hopefully it was just his brain recovering from surgery.
This week we meet with one of Breanna's surgeons to discuss how she is recovering from her surgery a few months ago and talk about the next steps for her. She already has a surgery date in July with the occular-plastic surgeon but this appointment will see if she needs another surgery with the plastic surgeon.
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!