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 that have 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 three years of chemotherapy. They cycle him on/off to give his body rest. As of right now, there is no cure, just hopes of keeping the tumor stable for as long as possible.
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.
As we speak highly specialized doctors are discussing several surgeries for my daughter,one as early as this summer. They will require several days in the hospital. 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.
**** I do update often on my carepages website http://www.carepages.com/carepages/WillardFamily *
Right now we agreed on two months, partly because after the first of the year his insurance changes and chemo will be very expensive and then they want to see how his body tolerates it. It is the same chemo he has had in the past, he will take it daily for the next eight weeks. They are talking about him going back on it for a year. I just do not know what we are going to do. There is so much on our plates. Going back on chemo means monthly blood work and checks in with his oncologist, this means more back and forth trips to Duke. Add in his seizure meds, Breanna's upcoming surgery, new artificial eye she will need, and Cheyenne's recovery, I feel like I am drowning. We are trying, really trying to keep our heads up, but it is so hard.
Tomorrow is Thanksgiving and we are going to try and enjoy the day with good food and friends..
Tuesday Roy has surgery. They are going to take one of the wire clamps out that holds the VNS wires in place. It has turned and is now pushing out making a small bulged on his neck. The doctor said eventually it will work its way out and that will cause the whole thing to be contaminated and open him up to infection.
The surgery itself should not be very long or complicated and he will get to come home the same day. It is just another surgery that he has to go through.
He is still having seizures, and to look at him you would not think he is sick. He is my handsome strong husband.. but then on a daily occurrence, I see him fall, twitch, jerk, and then lose feeling and strength in his left side. It sucks and is still scary, because even though these are small partial seizures lasting less than a few minutes, they can at anytime turn into "grand mal" seizures.. Roy has only had a few of those, and those are terrifying..
Cheyenne's surgery was moved up a week, so it will be Monday November 7th. She is very scared. I don't know how long she will be in the hospital, maybe 2-4 days, it will all depend on how she does.
Breanna is doing well, we see the surgeons Thursday to discuss what's next.
My Mom already had her tickets booked for the 12th, so she won't be here for Cheyenne's new surgery date. So please keep us in your prayers, its going to be difficult to navigate this. With his seizures, Roy can't drive, so going back and forth to the hospital will be a challenge.
Dealing with three family members with chronic conditions is well overwhelming to say the least.
I miss my family, its so hard doing this by yourself. Medically though, this is the best place to be. Roy at Duke with his brain tumor and Breanna at UNC with her stuff.
Roy is still on a very large amount of antiepileptic medication all at very high dosages. His neurologist was trying to add a new medication while at the same time lower another one. He thinks that is what caused Friday's episode.
Even with the VNS and all the medications, Roy is still having several seizures a day. Roy has such a low threshold for seizures, even dropping one by a few mg triggered one. I have seen Roy off medication and it is very scary. They once admitted him for seizure study, started lower his meds and he was having seizures one after another. His body never getting a break.
His neurologist mentioned a brain implant or adding more medications. Both are risky for different reasons and neither is guaranteed to work. He also said it might be a good idea to think about chemotherapy.
While at this visit we pointed out a knot on Roys throat that popped up about a week ago, the doctor was a little concerned and thinks it is part of a wire from the VNS and wants us to see the neurosurgeon who put it in. He called today to see if we could get in, but he is not at Duke on Mondays. So now we are waiting to hear back from them.
Tomorrow Cheyenne has an appointment and then Wednesday both girls have doctor appointments.
Next week it looks like there may be only one or two appointments, but then the following week is filled.
Cheyenne surgery will be coming up soon and then before you know it Thanksgiving will be here.
I have been taking a few online classes, but finding time and concentrating is hard between everything that is going on. It is so hard on our family trying to do this alone. Every week it seems we are taking someone to an appointment. Breanna just recovered from her surgery and now we are getting ready for Cheyenne's. There is also the realization Breanna still has a long road ahead of her. With many more surgeries.
The doctors are hitting a wall when it comes to Roys care management. Do we think about adding another medication, trying chemo again, or this brain implant?
It just seems bleak.. We are juggling so many balls, dealing with so many chronic conditions, to which there is currently no cure for.
I am exhausted and I know Roy is too.
One very exciting wonderful thing did happen yesterday.. Breanna was baptized. Made this momma proud!!!
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!