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 are in a holding pattern for Roy. They are working with insurance to try and get this new medication covered. Meanwhile his seizures are increasing, his balance and short term memory are getting worse, and he has little to no feeling in his left leg. This all effects his walking and gives him what we call a "floppy foot"
His peripheral vision has never returned, but his brain has adjusted to the loss.
Next month he has another MRI and we see the nuero oncologist.
The surgery he had earlier this year has done nothing for his seizures. It did give him a reprieve for a short time, but they have returned with a vengeance.
I just want to be able to take a breath before we are hit with something else. Just some breathing room.
The stress we deal with on a daily basis is indescribable. Every three months, we go see his neuro-oncologist, have an MRI and hold our breaths to see if his tumor has changed in any way. Its like a ticking time bomb in his head, is always there.
We just have to remember to keep our faithin God.
This week we met with several of Breanna's surgeons to discuss another surgery. It would most likely be a collaboration between three surgeons. Her plastic surgeon would lift the right cheek, debulk more of the plexiform neurofibroma, and try and get rid of the pocket that has formed on the lower cheek by her ear. Her oculoplastic surgeon will work on her eyelid and possible eyebrow. Her craniofacial surgeon will remove the screw that is starting to push its way out of her jaw.
She will also need to see the prosthetic eye guy to either have her current prosthesis adjusted or another one made.
It has been a long hard journey, Breanna has undergone many many surgeries and I feel like we are finally starting to make some progress. I hate that she will have to endure another painful long surgery. It takes her weeks to months to fully recover from these surgeries, between the swelling and bruising.
Surgery will probably not be until after the holidays, maybe next January or February.
Breanna has been complaining of facial pain. She noticed a bump forming on the bottom of her right chin. She had me feel it, and it feels like a screw trying to push its way out of her skin. This very concerning, especially since she just had jaw surgery last year. I emailed her maxillofacial surgeon and he wants to see her Monday. I pray that it is nothing serious. In two weeks she also has appointments to see both her plastic surgeon and oculoplastic surgeon. They want to see how she is healing and evaluate if another surgery is needed. Depending on their treatment plans. We will then need to have her refitted for another artificial eye, but they decide to have surgery, she will have to wait on that.
Roy has been experiencing more intense seizures. They are larger, last longer, and take several hours to recover from. He has also been plagued with debilitating headaches. Often requiring him to stay in bed all day. His team of doctors is aware of this and we had a conversation with them this past Monday. They had mentioned starting back chemotherapy because even though his MRI’s have shown no change, with his symptoms there could be changing. They also think that the chemotherapy could help with his seizures. Roy has been on chemotherapy so many times, he is just not wanting to go down that road again unless it is his only choice. The chemo is rough and it takes so much out of him. The fatigue, bouts of nausea, just the crappy way it makes him feel. Not including the blood drawls, the lifestyle change and the fact that is something he would have to take for at least a year.
His neurologist mentioned a new drug that is coming on the market for seizures in the next month or so. It's a cannabis-based drug, it looks promising, but his doctor said getting insurance approval may be a problem.
So right now we are in a holding pattern with both Breanna and Roy. We are waiting on the surgeons' recommendations for Breanna. And will have to see how the next few weeks to month goes with Roy.
I dont know what the future holds for our family, what Gods plans are, but please keep us in your prayers.
They are just guessing at this point. It is frustrating not getting anywhere, never any answers or solutions.
Breanna may require another surgery. She had another post-op visit yesterday and it was brought up. They have scheduled another consult in a few weeks to meet with her other surgeons and we will talk about their opinions on the matter.
Since her very bad allergic reaction, she has been taking off the trial medication and there had been no further discussions on what the next steps may be.
Pray... pray for a cure for all of my family... They are each battling something.
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!