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 *
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!!!
This surgery will involve cutting her upper and lower jaw bones, putting them in the right position, and moving her chin forward. Kinda like putting together a new puzzle. Her jaws will have screws and brackets holding them together. This will change the shape of her face.
She will be on a soft mushy diet for 6 to 8 weeks after surgery, no chewing. She won't be wired shut, but will have very tight rubber bands holding her jaws together and it will allow very little movement.
She will also be very swollen and bruised for several months, and quite numb around the mouth and cheek areas.
Next week we are supposed to start the braces process.
We have a tentative surgery date in November, hoping to confirm that either tomorrow or Monday.
Ill try to explain how it was explained to us. Cheyenne's right side looks normal.. Like an ice-cream cone with a perfect scoop of ice-cream turned on its side, fitting into the hip socket. Her left looks like a melted scoop sliding of the cone. It does not fit into the socket and constantly rubs.
My head is spinning.. Tomorrow we meet with Breanna's maxillary doctor and talk about the next steps for her.
As always we have doctors appointments the next couple of weeks. Thankful only a few next week, but the the week after is slammed again. November is just as busy.. Appointments for Roy, Breanna, and now surgery for Cheyenne. I just want to be able to breathe..
We having been going back and forth with the prosthetic eye people. They are trying to get insurance to approve a new prosthetic .. It is presenting to be a challenge and even if they do, it will only be for a small amount. Which still leaves us with a hefty amount to cover. It cost around $2,000.
This eyes are made custom to the individual. They take molds of their eye socket, there is painting to match the other eye, making sure the pupil is even and symmetrical. Its all a very interesting and long process. I think in NC there are only three certified individuals that can do this.
As always please keep us in your prayers..
Its hard seeing your daughter in pain and she asked every day if we have heard from the doctor.
Our peditrician is looking at others ortho doctors but finding one that is familiar with NF and the complications that can arise from it, is not easy.
I am also worried because my parents live over 500 miles away and if Cheyenne has to have surgery I don't know what I am going to do. I can't be in two places at the same time. Roy can't drive and I'm not leaving Cheyenne alone in the hospital. My mom was just here for Breanna's surgery.
The surgery that they mentioned for Cheyenne, is a pretty big surgery with a long recovery time. I have read and read about it, and it scares me. Three months recovery time, possible walker, physical therapy. I just want to wrap my arms around both my girls and make it all better.
I am trying not to get all worked up until we know more, but its hard.
Next week we meet with the maxillary surgeon to talk about Breanna and when he wants to do his surgery and when to put braces back on her.
Then in a few weeks we have more post-op visits. She is healing well. I hope soon they give the ok for her to be fitted with a prosthesis. I know that will make her feel better, but that is another huge expense.
They have mentioned more surgery.. Bone shaving. It seems that as the tumor was growing the bone grew around to accommodate it and now that the tumor has been debulked you can see the difference. So they want to shave her bones down. Crazy. They actually do that. They also want to try and do the sinus surgery and eyebrow and forehead lift.
Roy has his appointment with the oncologist and his MRI in November, I know the subject of chemo will rear its ugly head.
In a few weeks he will see his neurologist to see how things have been going and to get another adjustment on his VNS.
We have a lot going on with our family, I often wonder how we will manage.. All I can do is try and keep my faith, its hard and I struggle with it daily, but I gotta try.
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!