Had a good day today. We saw Dr.V (Roy's neuro oncologist) and she is very happy with the way things are going. This particular chemotherapy regimen seems to be working. His seizure activity is much less than it was a few months ago, back then he was having a dozen or so a day, and now it is less than half of that. His energy level is up too. The MRI shows that the tumor is stable with no new enchantments or lesions. Dr. V is hopeful that in a few months we may even see a slight decrease its size.
I am DONE!!!!! This gonna sound bitter and angry,but I DO NOT care!!! After the first of the year, we have no health insurance at all. The coverage we have now only goes until the end of the year.
This Obama care is not the golden goose everyone thinks it is.. First you have to find out which plans are accepted at you doctors office, then you got to see if they cover certain things like MRI's, plus you have got to look at if they cover prescriptions like chemotherapy and seizure medications (which surprisingly a lot of them do not).. and then you have to add in co-pays, co-insurance ect, this can add up to the thousands.. One we were told has a deductible of $8,500.. Finally the cost of the plan per month..
I have prayed, begged, pleaded with God to show me the light.. and you know what we are still in darkness..
I have two family members that require specialized care..
I Roy needs his medicine to stay alive, to function.. If he even misses one dose, then he seizures start, like non stop convulsing
Most people either do not get it or just do not care..
Disability is not the holy grail either, because first you get very little, second if you get approved there is a 5-6 month waiting period before you receive any payments, and third disability insurance has a 24 month waiting period before you are covered, (this means you have to go on obama care until that kicks in)
The reason I know this, is because we have talked with social services, disability office, the social workers at the hospital.. It just plain sucks!!
All of Roy's medicines are generic so they have no assistance program to help pay for them.
My last job was at a bank almost 15 years ago... I have always been a stay at home mom..
I just do not know what to do..
How are you to explain to you children, that I am sorry daddy is sick but we cant afford his medications? I know without them he may die ooh and Sorry, no Christmas either..
I know some people question the whole good vs evil thing, whether there truly is a God or a devil. Well I believe there is, because how can one family experience so much heartache if there is not. You can't say that its all just a run of bad luck. There has to be outside forces at work. We have dealt with so much.
Look at my baby girl, look at everything she has been through, and will have to go through. She is so beautiful, but sadly the first thing people see is that she looks "different" and some people use that against her. We saw her cranial facial surgeons the other day and they looked at her MRI and did not see any need to jump into surgery immediately, but said that as she grows, it will continue to get worse. Her right side of her facial will continue to drop and shift , but they don't want to do anything until her bones have stopped growing. We still have to see ophthalmology because the tumor has damaged her tear ducts on the right side.
I need to call about occupational and physical therapy for her, so she will be able to operate a car when she gets old enough too.
Roy has an appointment with his oncologist and a MRI in a few weeks. He is still taking the chemotherapy daily, along with his regimen of anti seizure pills.
Breanna's occularist finally received payment from Roy's old insurance company for her prosthetic eye, but out of $1800, they only payed $993. They said that is what they estimate a prosthetic eye should cost. That leaves us with around $800, which we have no way of paying, because we have no income.
I am still so angry that a huge company, one that has multiple branches in every state, could treat a loyal employee that way. An employee that always received glowing evaluations. In the fourteen years he was with the company, he never once was reprimanded, written up, or even received a black mark on his employment history. A company that now, given my husband's medical condition and history, know there is no chance that he can look for employment in the same field he has worked and trained for these last fourteen years.
Its not like he has a cold, we have to have highly specialized doctors to care for him and Breanna. and that cost's money. He has to take medications everyday to sustain his life.
We have had so many people come and go in our lives, and it is just becoming so hard to trust anyone anymore.
I am not asking for pity, I am just asking you to try and "walk a mile in my shoes" imagine if it was your husband and daughter. Imagine that you had our health problems, but still worked everyday.. Even when you could no longer drive because the seizures took that away, or you watch your daughter cry herself to sleep because she is tired of looking different. What about the aspect of losing your husband because of something growing in his brain. Holding your breath every time he gets a MRI because you don't know if it has grown or not. Knowing that if it starts to grow, your time with him will be limited. Now on top of that, you have no clue how you are going to keep a roof over your head or even provide medical insurance.
Yesterday we went to Duke to see Roy's doctors, get blood work, and pick up his chemotherapy. Next month we repeat the process with the exception that he will get a MRI. Everything is about the same except he is having around one to two less seizures a day. That is a little breath of fresh air. I pray that one day he can get down to no seizures.
We heard from Breanna's doctors, they want to see her next week for a consult. My beautiful daughter is growing up. It seems like yesterday she was twirling around playing princess and now she is wearing make-up, texting, and just becoming a teen. Where does the time go? Sometimes I just wish I could hit the pause button, just keep them little for a little longer.
Once again that damn roller coaster is hurdling us down to the ground. Breanna had her MRI yesterday and the NF doctor called me first thing this morning. Her MRI images are not great due to the fact that she has braces and a prosthetic eye, but he still feels the need for us to meet with the cranial facial doctors. Now if you remember, we had talked to these doctors before about her and we all agreed to wait to do surgery unless something came up. They wanted to wait until her bones have stopped growing. We saw them the beginning of this year and really had no plans to see them again for another year or so and now I get a call that her NF doctor wants to try and get me in with the surgeon as soon as possible for a consult
On the phone today, he had talked about possible facial nerve damage from the tumor. He does not think that is happening now, but he wants to double check with the other doctors. Now I know this does not mean surgery, I mean we gotta talk to them, get their opinions, and way everything.. but it is still scary that we are even talking about this. Hopefully we can still just wait and monitor things until she is older.
As of right now, I am waiting to hear back from the cranial facial scheduling coordinator for an appointment for Breanna. I also put a call into her pediatrician to see if she could but some light on this. Right now, I am more confused than ever.
Cant we ever just get a break? Maybe just a little room to breath.. Lets us catch our breath before something else is thrown at us..
Somedays I really dislike insurance companies. We have been dealing with Roy's old insurance company (the one he had before he was let go) to cover Breanna's prosthetic eye.The one she got earlier this year. We had all this pre-approved, but they kept denying the claim. Every time we called, we would get a different answer. Well they finally paid the claim, but her eye was $1800 and they only paid $900. They said that is what they determine a prosthetic eye should cost. I have not found anywhere in North Carolina or any surrounding states that charges less than $1800, most charging upwards of $4500. Like I had stated before, there are 3 maybe 4 ocularist in the state of North Carolina. I don't think any are in South Carolina. It just makes me so mad because this is something my child needed, and now we are left to pay the remainder ,because an insurance company says that it should only cost this amount.. But this same insurance company has none listed as "in-network" providers anywhere.. Not in NC, SC, GA, VA.. anywhere. It is just so frustrating.
We heard from Brea's pediatrician and she got the MRI ordered, it will be this Thursday. Many prayers please.. Please pray that her plexiform neurofibroma has not changed. Also Breanna is not a fan of MRI's, the last one she freaked out a little in. Prayers that she handles this one better than before.
Then the following week, we see Roy's oncologist, have his blood work to check his levels, and then pick up his chemo.
All in all, he is tolerating this chemotherapy regimen better than ones in the past. I think, though, instead of losing weight, this time it is making him gain it. Maybe its stress... because his eating habits are the same.
We are still dealing with seizures, though they don't seem to be as frequent as they were.
I want to thank you all for the love and support that has been shown to us. It seems whenever I wonder how are we going to pay for this months electric bill, water bill, or even our mortgage... We receive an anonymous donation in the mail, or I will get a notification from my gofundme page.. and we are once again shown God's grace and that people really do care about our family..
So thank you from the bottoms of our hearts..
Love and Blessings,
Well we saw Roy's neuro oncologist and so far she is happy with the way things are going. His tumor appears to be stable. Her plan is to see him every other month and have an MRI done and then on the in between months, she wants her PA to see him, so every month he will see someone. His seizure activity has changed some, but all in all everything is good for now.
Thank-you guys for the continued prayers and for all the generosity you have shown us.
Saw Roy's oncologist today and everything looks good. We have to come back next month for a MRI and recheck. His doctors want to do MRI's every two months, they seem to be more pro active here than other facilities we have been to. Next week we meet with a new neurologist to get his opinions on Roy's seizure treatment. All in all we are happy with Duke's treatment plans so far.
This process has all been so scary.. So much has changed. I still wake up every day in disbelief. All we can do is try and get through one day at time. Please continue to keep us in your prayers. We are still trying to figure out what we will need for long term health insurance and how to provide for our family.
Well the girls are in Florida for a few weeks visiting family and the house it to quiet without them. I am so thankful to my parents for flying them down, its the break the girls needed.
This past month has been a huge change for my family... Our whole world was turned upside down. We are still trying to navigate through it all. It is just all uncertain and scary.. I mean one minute Roy had a job and the next it was gone.. We now have no income, so basic things like how we are going to pay our mortgage and utility bills consume my every thoughts.. My husband worked his butt off to get where he was, and then one day, its all gone.
We have been giving an incredibly hard burden to carry.... Not only trying to deal with two family members that have chronic medical conditions, but also now dealing with no income to support our family...
Roy has now been on chemotherapy for almost two weeks and as the toxins are circulated through his body to try and stop this huge mass in his head from growing... his days are filled with good/bad. Isn't it crazy that he has to put something into his body to try and save his life but on the pill bottle there are bio-hazard warning labels. He is not even supposed to tough the pills with his bare hands.
You see all these homeless people holding signs, and I would give them a few dollars here and there... and now I wonder... could that be us????
So yesterday Breanna had an appointment with her orthopedic hand surgeon and we actually got some good news..
Her arm looks good, the bones and plates look solid. We do have to watch for any pain, swelling, or catching of the wrist because he said the tendon can sometimes start to rub over that plate in her wrist and can tear the tendon. When she is old enough to start driving she will have to see an occupational therapist so they can teach her the skills and modification she will need for driving since her left arm is so much shorter and weaker than the right. He also said that when she is old enough, and if she wants, he can go in and clean up that huge scar and extra skin she has on her arm from all the past surgeries, but for now we are good!! Yay!!
The only other thing he noticed, is when she walks, she turns her ankles in putting a lot of pressure on her them. He recommended getting her a good pair of sneakers (going somewhere and having someone fit her) to help support them. I am sure they are not cheap but if that does not work, then he would want her to see a podiatrist.
I want to thank you once again for all the compassion that has been shown to my family.
Roy started chemo Monday night and so far seemed to tolerating but today was not his best day.. Much of the day he stayed in bed, he was just really nauseous. I hope that today was just a fluke, because he has a long hard road ahead of him.
We spoke with the doctors at Duke and they are hoping with this new chemotherapy regimen that they might be able to shrink the tumor some. They want to do MRI's every two months to monitor his tumor. They are also hoping that this will help with his seizures.
We spoke to another one of the doctors that we sent our records to for a second opinion and he agrees with the treatment plan that Duke has planned for Roy.
They both said since Roy's tumor has the 1p 19q co- deletion, it responds better to chemotherapy than those without it. They also said they would not recommend radiation at this time.
So many changes has happened this month.. New doctors, loss of job, income, and insurance. It has been a bit overwhelming. I will admit some days it was hard to just get out of bed, but all the support you guys have shown to me and my family has made it so much more bearable.
Tonight Roy starts his year long regime of chemotherapy. I hope and pray that this works. Its hard watching him go through this again, hearing him gag on the chemo pills knowing he will have to take these for the next 365 days, watching the seizures ravage his body, and listening to the girls ask God every night to heal their daddy.
Feeling like we are riding a never ending roller coaster. We are filled with hope and flying up with the clouds one minute, then the next that hope is taking away and we are hurdling straight for the ground.
Today we heard back from Duke, and they are hesitant to do any type of resection, instead they are recommending chemotherapy for a year. He would have to take it everyday. They are wanting him to start as soon as Monday.
We are still waiting to see their neurologist and see if there is anything else he recommends to help with Roy's seizures.
I just do not know what to think. We have been told so many different things now.. It is just all so confusing. I do know that we are not going to do radiation. That is just to final and we are not ready to take that "step" at this point.
If we agree to do chemotherapy.. Roy would be on a lower dose than he was before, but he will be taking everyday and it will eventually put a huge strain on his body and mind.
What ever we decide it going to impact our lives in a huge way.
I am often asked "How are you" or "How are things"... and I really don't know how to respond. We are still trying to take everything in, still trying to process it all.
The days are filled with a mix of emotions. Shock is a big one, another is fear and worry. I can't even begin to think of what is going through Roy's mind. I know this has got to be weighing on him. Then this makes me worry, because stress and lack of sleep is not good for someone who has epilepsy.. in fact it can even trigger seizures. I know that he is thinking about the future... The doctors are talking about a possible resection and starting chemotherapy again.
Then I worry about my children. I know they can sense the stress and they don't need to carry that on their shoulders.
Our days have been filled with filling out paperwork.. We have filled out this form and that form, talked to this person and that person...
I have a list that never seems to get shorter, I cross of one thing and ten more replace it.
I do want to thank you all for the support that has been shown to us. Words can not begin to describe how grateful we are to all the emails, cards, and donations that have been sent our way.
We are going through a very difficult time right now, but with your help it has made things a little easier.
Shock and disbelief..
It is just so much to comprehend.. 14 years my husband devoted to his job, 14 years he got up, went to work, 14 years of loyal service and then in a matter of seconds it was gone.
I still can not belief it. My husband has had a job since he was 16 years old. We have been married for 15 years and he has done everything he could to provide for us, to keep a roof over our heads, food on the table, clothes on our backs, and made sure that we had health insurance to get the care we needed and now that is all taken away. Its gone.. Out of the blue, he now has no job, no income, no insurance.. nothing..
I just can not fathom all of this.... I am hurt, angry, scared, sad,.......
I worry about my girls, worry about my husband. We are a family that has already had to deal with the weight of the world.. now how can we deal with this too??
So yesterday, I think my heart hurt about broke into a million
pieces.. A very dear friend of mine.. her 7 year old daughter.. a
child who is not much older than my young niece, offered to give me
all she had.. Her last $8..
I was so overcome with emotion, I lost it. What a huge gesture..
A child was willing to give me all that she had, to help our
Ever feel like you are in a nightmare and all you want to do is wake-up? Well that is what this last week has been for us. Except this is not a nightmare, this is our life now. I have felt so many emotions this week... It have cried till I thought no more tears could fall, but they do.. They continue to fall everyday. We have been put into a incredibly hard place, one that I never fathom we could be in.
We have filled out form after form.. Spoken to so many different individuals. and we still have answers.
Our insurance expires at the end of the month, and we are still waiting to hear from social services about medicaid, but that could take 45 to process. We can take Cobra, but that is very expensive.. It is not an option, my husband and my daughters HAVE to have insurance coverage..
Today Roy had some doctors appointments and their opinion is to hold off on radiation until it becomes a last resort...
Instead they want to talk with their neurosurgeon and see if surgery is an option, and then they also talked about doing chemotherapy again, but it would be a different dosage and he would have to take it every day instead of the 5 day cycle he was on.
I am so overwhelmed with things right now. We have so many things on our plate.
I am going on virtually no sleep, usually when I do fall asleep, it is because of pure exhaustion setting in.
After many years with this company. . 14 years.. they let my husband go. This is signing my husbands death warrant because without his medications he will die
I am so angry. I pray and pray and pray.. and nothing!! Now we could be homeless, hungry, possible lose my husband, my daughters are gonna suffer.. Where is this great loving God??? Why has he abandoned us??? Tell me what are we supposed to do????
As I sit here today and think back about the day Breanna was born, I never thought the journey would be so hard. In a blink of an eye she had grown up, soon she will be driving and venturing out in the world. If I thought she had it rough as a child, I can't imagine it as an adult. As a child, she has me to protect her, but what about when she is an adult. I mean just think of driving. I know there are adjustments and modifications that can be made, but it is something most families never have to deal with. I mean in all honestly.. She has one eye that has vision and one arm that has full use. I don't even know where to go for something like that.
Many sleepless nights, I lay awake praying that God will protect her. That he will watch over her.Then I think about how she will pay for her medical expenses when she is an adult, Roy and I can not even do that now. I also pray that she will find a good man, one that will love her unconditionally, one that will take care of her. She has many obstacles she has overcome already and yet she still has a hard road ahead of her.
She is my first born, my baby girl, and I love her so.
Parenting does not come with a “how to book” There are no parenting 101 classes to take. There are no books, classes, pamphlets that can prepare you for all the emotions you will feel. The overwhelming love when they lay your child in your arms for the first time. The first time your heart leaps in your throat when you see them in pain from getting a shot, or joy when they utter those first words, or even when you see them take their first steps. How much your heart can break when you drop them off at pre-school for the first time and they wave good-bye and you pray that they have a good day.
There was nothing and is nothing to prepare you for when you child hurts. We tried to make the best decisions we could at the time we had to make those decisions. Yes we look back and realize we made mistakes, but we were young and put our trust in the doctors.
Breanna has got to be one of the bravest strongest individuals I know. She just has this amazing spirit about her. She has got to be, to handle all she has been through. If you ask her, she will say she doesn’t remember much about her surgeries… but I am not sure if she just hasn’t blocked those out.
I can remember her first big surgery like it was yesterday. It was on a Monday morning, in early September and Breanna was just three years old. They had just given my baby her “margarita cocktail” and the meds were already beginning to take effect. She tucked her dolly Molly under her left arm and waved good-bye to us with her right chubby little toddler hand. We went to the waiting room to well wait. We tried to play monopoly to take our minds of things and pass the time, but we watched the seconds turn to minutes and then the minutes turn to hours. After about eight agonizing hours, they called us back to ICU.. There was nothing that could of prepared me for what I saw. My little girl had her head wrapped up, she had tubes coming from everywhere, and her poor little face and head was so swollen she was unrecognizable. It took all I could not to lose it. Whether it was right or wrong, my motherly instinct took over, and I crawled up in bed with her and scooped her up and held her for the next few hours.
How hard it must have been for her, not to understand what was going on. The last thing she remembers was waving good-bye to us, then the next she is waking up in a strange place in pain, not able to see, and have all kinds of gadgets sticking out of everywhere.
You would think that would be in the end of it, but a few weeks after she was released and back home in Florida, she had to go back into the hospital because of a post-op infection. There she was poked every damn day by so many different doctors and techs. She had PICC lines, heart monitors, just all kinds of crap to deal with, and all she wanted to do was go home and play with her sister. Again I just did what God told me to do. I crawled in her hospital bed with her and held her.
Once again, her ordeal does not end there. She had to have more surgery over the next few years, one just a few months after that. I could go on and on about her surgeries over the last 13 years, but we would be here forever.
I know we all have our problems in life, but if you could please just keep my daughters and my husband in your prayers, I would appreciate it. They have been through so much suffering all ready, they cannot endure anymore.
Being a parent is one of the hardest roles in life. I never realized how two human beings can hold my heart. I am so thankful that God has entrusted me with these two beautiful children.
Today I am angry…
This is a picture of my beautiful daughter. Notice something?? Her eye?? She can no longer wear her artificial eye prosthesis because it was made so incorrectly that it actually rubbed her eye socket raw and she had to be placed on antibiotic and steroid eye drops. We have switched ophthalmologist and they recommended a different occularist who was amazed what an improper fit her current prosthetic eye was. Now we need a new one made and the cost can range upwards of $4500. This particular Occularist charges $1850. Our lovely insurance does not have any “in-network” doctors. Currently in North Carolina there are four Occularist and none of them are covered. We have been fighting and arguing with the insurance company to cover this cost at an “in-network” rate, but we have been told by the Occularist that the new “in-network” price for our insurance is quite low (only a few hundred dollars) and we would be responsible for covering the rest. It is so frustrating, that insurance companies can do this. Most do not realize that having a prosthetic eye is a must for many reasons. It holds the space in your eye socket, it helps give your face shape, and let’s not forget cosmetic reasons. So now because of the insurance company refusal to pay the full amount, my daughter is going to suffer. If we go anywhere Breanna wears her sunglasses, even in stores, because she hates the looks she gets.
It has been well over a week since my husband as requested his medical records and when he called today, they said they were going to try and get them sent out today or tomorrow. We have chosen to wait on radiation therapy until we hear back from a few more doctors, and we cannot hear back from the doctors until they review his records. I hope and pray that we are able to get some answers.
So we just left the Radiation Oncologist office. I want to vomit! I just really feel sick to my stomach. We are so confused. Everyone keeps stressing that this will not prolong my husbands life but help with his quality of life. They keep talking like within the next few years or so, that he will be gone. I ask them, what they think the life expectancy is, and then I get the deer in the headlights look.
The doctor was very nice and thorough. He went over all the side effects with us and then the benefits. He is wanting to start right away. They already have him on the schedule for his CT scan and the procedure to make his radiation mask. Our minds are swimming, we haven't even decided if this is the path we want to take.
We are in the process of sending his records off for second opinions, but that is a long and drawn out process, not to mention quite expensive.
No family should have to make these decisions. They should not have to worry about radiation, chemotherapy, a living will, and such matters.
So today was hard. Its all a bit confusing and we are still trying to wrap our heads around it. Roy had his MRI, then we met with his oncologist to discuss things. He is pretty much maxed out on options for seizure medications, but continues to have seizures. Right now they are centralized to his left side. His tumor appears to have "stable" but all this means that it has no new progressions, no new lesions. Technology can only pick up so much. They seem to think that since his seizures are getting more frequent because the "structural make-up" of the tumor is changing inside and this is bad. His tumor is not like a ball, it is more like a hand with fingers that stretch all over the right side of his brain.
So we met with the Radiation Oncologist after our appointment with his Nuero Oncologist. They reviewed all his past MRI's and talked at great length with us. They want to start radiation therapy. It would be 5 days a week for 6 weeks. Right now they are working on authorizations and such and then we would go for our consult and to talk more about it. They are hoping that this radiation would "stabilize" his seizures to where they would be less frequent and not get any worse.
Apparently with this type of tumor it is not a matter of if but when he will need radiation. So the question is do we start radiation now with these smaller but frequent seizures or do we wait until his seizures get larger and more dangerous to him? Even these little seizures are doing damage to his brain. There are a lot of side effects with radiation that can happen even several months to years down the road.
We just have a lot to think and pray about.
Most people don't ever face the trials and tribulations that my family face on a daily basis. I can honestly say that I never imagined being a mom and a wife could be so incredibly hard. I have had my heart felt like it has been ripped from chest, felt like my lungs were being squeezed until I was gasping for breath. As a mom we are giving children to love, nourish, and prepare them for life. We are to teach them about God and how to lead a christian life. Much of you know about Breanna's medical struggles, the hell that she has dealt with since she came into this world. The times we almost lost her.. She faces painful surgeries and recovery times almost yearly She deals with looks, comments from people on a daily basis.. She know she looks different when she looks in the mirror, but we tell her every day how beautiful she is.. She is a girl and we have all been through that "awkward stage" but imagine going through that as my daughter.. with one arm noticeable different than the other, with facial deformities.. How would you feel? This prosthetic eye that we just had made last year, was clearly not made and is causing problems with her eye socket.. She is going to have to have another one made and the cost is staggering.. The price 3500-4300 depending on the complexity of the eye. They will file insurance as a courtesy but we are expected to pay the full amount. I have been on the phone all morning with our insurance company trying to figure things out. It just makes me sick.. that first I can not give me daughter this.. second that there are only three people in NC that do this, and third the exorbitant price they charge.. I as a mother am supposed to provide for my child, but how can I with this... Doesn't my child deserve to be happy too...
Then move on to my role as a wife... I never imagined we would be dealing with something that could take my husband's life. Never thought that a brain tumor could take so much away. He is a man.. God gave men certain roles, but this as taken much of them away. I know he hates that he can no longer drive, that he has no short term memory, that he gets easily fatigue, that he takes several medications a day, that these daily seizures are slowly killing off brain cells, that every time we get an MRI we hold our breath that his tumor remains stable.. and now we have the added worry about his Chemotherapy that he took, that later in life he does not face added complications from this and the word radiation keeps rearing its ugly head.
I lay awake many nights with all this swirling around in my head.. I just want to have a "normal" life with "normal" problems.. Want to take my kids on vacation, be able to go through one day with out having to get the endless supply of medical bills that come in the mail, not have to make my rounds of calls to doctors, insurance companies, and pharmacies.. I wonder about all the "what ifs"..
What a long week.... I hate to be such a debbie downer, but come on!! This dang rain cloud that seems to linger over our house needs to move on. We had to get two new tires for the van, which is life I know, but wait that was just Monday.. Next we had to get 3 of Roy's anti-seizure meds which were a couple hundred dollars, he has two other medications we are waiting approval through the insurance company, and now the doctors want to order a sleep study and possible cpap machine. We went to one of his doctors on Thursday, waited 3 hours to be seen, and when we finally were, that was for about 15 mins or so. His vision was good, but there is some growth on his eye they are going to watch and if it gets any bigger will have to be removed. Then today I took Breanna to one of her doctors because of all the issues she keeps having with her eye and there is something going on with her eye socket. They want to put her on steroids and antibiotics drops for at least a month to see if it will "calm down her eye socket". We have to go back in a month to see her. She said more than likely a new prosthetic will have to be made which cost a small fortune.. I am obviously not taking her back around here because she has had 3 made within the last few years and they are not "working" so I found one in Winston-Salem but I have know clue on the cost. I have to call and check on that Monday. The doctor also said she will probably need surgery for a drain. This means we will have to see an ocular plastic eye surgeon, as you know nothing is ever simple with Breanna's case. I still have not called her arm doctor because of everything else that has been going through but I need to do that soon. She has just now fully recovered from this last surgery. I am not sure how much more she can handle.. she is still a child and carries so much on her shoulders. Well then we get home today and our refrigerator is not working. So we have everything in coolers, I just don't know what to do.. I feel like crying. I constantly have migraines, so bad it makes me nauseous, my right eye feels as though it is going to pop out and my neck just throbs. I made an appointment for Monday for that.
Well it has been a little over two months since Roy had his surgery, and I wish I could say things have improved, but sadly they are a little worse. His seizures have returned and they have become a daily occurrence. They are still centralized to the left side and only last from a few moments to a few minutes. He is back at work, since they will know longer accommodate him to work from home. He uses his cane to get around most places, but does have his wheelchair as a back-up. We have been in contact with his doctors and w His seizures are coming from his tumor, and since the area they are coming from is inoperable, we are left with really not many options. The device they had mentioned before, would most likely not work with him, because your use of MRI's is limited and his tumor needs to be monitored.
They had mentioned radiation therapy again, but it would be such a large dosage over a large portion of his brain and that poses many many side effects. Also if we went that route, he could not get radiation again for 10 years. Right now Roy's tumor appears to be stable (we will know for sure in May when his next MRI is scheduled) and we are not sure we want to use our last card now. So if he went for radiation to see if that would stop the seizures and his tumor changed we could not do anything, because he maxed out on chemotherapy and he would have used his radiation therapy. Also there is no guarantee that it would work.
It is all so frustrating!! It kills me to see this disease slowly take over his body and take so much from him.
How much can one person take before they are pushed to their breaking point? I ask myself this question everyday because it seems like more challenges get laid on on us everyday.
We had a rough week with Roy, and now will have to make the incredibly hard decision about radiation since we really have no other options left and with that comes so many other side effects.. many could happen later in life.
Yesterday afternoon Breanna was taken by ambulance to the hospital. She woke up with the whole right side of her face swollen, so I called her surgeon and he was out of town and suggested I take her to our local dentist to check things out. Well I ran her up to the dentist and they immediately saw a very bad post op infection. They suggested possible IV antibiotics, so they were on the phone to her doctor when Breanna just passed out and her head hit the floor so hard people from other rooms came running. She looked out of it and the ambulance was called. They took her to Wakemed and their they gave her iv antibiotics, some fluids, and did a ct scan. We finally got home after midnight, but had to be at UNC this morning because her oral and maxillary surgeon at Duke wanted her to see an oral and maxillary surgeon at UNC since he was out of town.
So we went to UNC this morning and they had to give her a local anesthetic because they had to go in and remove the infection. They got most of it, put a drain in, and she is now on a very high super bug antibiotic along with a oral antibiotic mouth wash.t She is sore, tired, and swollen.. Poor thing is sleeping now. We are home though!!
I also got to go and get Roy's wheelchair today, but on our way home from the hospital my check engine light came on.. Lovely...
So I will ask again, how much more can one person think before they are pushed beyond their breaking point..
I am tired and exhausted.
We saw a few of Roy's doctors today.... they gave us a lot to think over the next few months. Its all so scary and the outcome uncertain. We have to make some life altering decisions soon since his seizures are still not under control. Also now there are studies shown that patients who received temodar are developing leukemia later on in life (like a few years after treatment ended). Roy received this drug for 24 months, it is just so much to take in... please, please, please continue to pray for my family. I know that everything is all in God's hands, but I can't help but wonder why he has laid this incredibly huge burden on us. It seems like we have been struggling for ever with no end in site.. sometimes I think we are never gonna get are happily ever after.
Thought I'd post a quick update...
Roy is still doing physical therapy twice a week and is very slowly making improvements. He still gets tired very easily and just walking up stairs takes all his energy. He is getting around better with the help of his cane, but for long distances he will need the use of a wheelchair. On Tuesday we went to get his stitches and staples out, boy was he glad about that. Wednesday we went for Breanna's post op and everything looked good. Then Friday the girls went to Lego Fest with some wonderful new friends. They had such fun.
On Saturday I got to have a much needed moms day out with Mary. It was so nice to have a girls day, nut unfortunately Cheyenne started feeling bad Saturday night, and by Sunday morning she had a fever, sore throat, and was throwing up. Poor thing is upstairs now feeling miserable. She has not moved from her bed all day.
We were able to get a glimpse of spring weather today, but winter is coming back with a vengeance tomorrow. My favorite season is fall, but that is closely followed by spring...
In the next few weeks we have a few more appointments coming up with Roy's doctors to talk about what the next steps will be, please continue to keep our family in your thoughts and prayers.
We are home. Breanna is swollen and sore, but she is upstairs resting and watching Cloudy with Chance of Meatballs 2. Thank-you redbox.. Molly (her doll that she has had since an infant and one that has went through every surgery with her) is resting beside her. We often look at children in their teen years as "grown" because they are in the weird in between stage but days like today I am reminded of the child Breanna really is. She still gets scared and still needs her mommy, and you better believe her doll molly went with her for this surgery,, Now don't mistake Breanna for being "childish or babyish" because that child has been through more pain and suffering than most grown men can handle, but she is still a child that has been through more pain and suffering than most grown men.. its kinda like a double edge sword....
A lot happening at the Willard house.. Today Roy starts physical therapy and this morning the authorization came through for Breanna's surgery. So Friday she goes into the hospital (outpatient) and gets 5 teeth removed. This is the first step in the very long process of facial reconstructive surgeries. Poor baby is gonna be swollen and sore, lots and lots of ice cream for her.
I need to call her arm surgeon about her arm, its has been over a year since her last surgery and we need to make sure everything is healing correctly.
The doctors are still tweaking Roy's anti seizure medications since we had to take him off that one, he popped a rash and we don't know if it is from the new medication or if it is the new fabric softener that I got.
As you can imagine we are all extremely stressed and carrying tremendous burdens. Please pray for peace, comfort, and healing.
I sit here today and look at my husband, and see how hard these surgeries have been on him. I see how much they have taken from him and difficult normal every day task are and I am brought back many years ago, when Breanna was only 3 and having brain surgery.
How scared she must have been not being able to understand what was going on. I wonder if she thought she was being punished for something. From the moment she came into this world she had surgery after surgery, but at three years old she had her first major surgery... I cant imagine what was going through my toddler's head when she awoke in a hospital room not being to open her eyes, being in so much pain. Having tubes stuck all in her body. Wondering why she was in a hospital, why she just couldn't go out and play. Then just when she was starting to feel better and was able to sleep in her own bed, she had to do it all over again. This was when she got that bad post op infection, when we almost lost her. This was when she had to go back into the hospital for over a month. My baby daughter had to stay away from her sister and daddy for over a month, only able to see them a few times a week Had an IV stuck in her arm with medicine constantly going through it. Having to poked and prodded all hours of the day. It just brings me to tears to think what all she has been through in her 13 years.
Then I think about Cheyenne watching all this, and how as a baby barely over a year old, wondered where her mom and sister was. How many night she cried her self to sleep because mommy wasn't there to tuck her in. How today at only 12 that Roy's and Breanna's doctor appointments and surgeries have become normal to her
Next I look at Roy and see what this tumor has done to him. It has taken away so many things.. Because of it, he has seizures that are not manageable, he cannot drive, cannot be left alone, cannot go outside and run and play with his kids, he tires so easily often needing to take naps through out the day. It has made him forgetful, and is slowly taking away his short term memory. He takes a large quantity of pills daily just to survive.
Finally I sit here and thank about what these years have done to me. How that when I became a mom and wife I never ever imagined how hard it would be, how strong I would have to become, and how much I could love.
Well not sure what is going on. We just had to put a call into Roy's neurologist. He is having a lot of pain in his left side below his waist. He can not even stand with assistance because of the pain and the fact that he is very weak. He also still tires very easily, often only being able to stay awake a few hours at a time.
It is so hard seeing him like this. These two surgeries have taken a lot out of him. He is left totally dependent on me to help, even with some of the basics needs. It is still to early to see if the new medicine is working, I hope and pray that it does.
I am in the process of checking on physical therapy. So much on my mind and my to do list is never ending!
I want to thank you again for all the calls, texts, emails, messages, and cards. They mean so much. Also for all the meals, gift cards, and donations. I may not get around to sending out personal thank-yous but we are very grateful for everything. When you are back and forth to the doctors as much as we are, with them being at least an hour drive one way, and the amount of medicine Roy is on, plus parking, and then you add in everything else it can add up fast.
Every little bit helps and we are so thankful for everything. Please continue to share our page and please keep our family in your prayers
So Roy has been home a few days now.. He got to come home last Friday. He is doing well, but very weak. He is using a cane to get around, but somebody has to be beside him because he can fall at anytime.
This year our insurance through his job changed quite a bit , we have very high deductibles and when I went to get one of his prescriptions filled on Sunday and I about fainted. For a months supply the cost would of been over $1,100 and that is just for one.. Remember he takes 3 other seizure medications as well.
So I talked to his neurologist yesterday and they are taking him off the one that is 1,100 a month and putting him on a different one. I did have to get a few more days worth to wean him off,because it is not a medicine that you can just stop. Those pills ended up averaging around $17 a pill. His new one was around $70 for a months supply. It is all so frustrating! The plan is to wean him off the one and then at the same time slowly add in the other one.
I hope that he will be able to tolerate this new medicine and that it works. It is difficult adding or taking away medicines because first he is on so many and second it would be very dangerous for him to have a seizure at home right now so soon after surgery, he could fall and bust open his stitches.
Thank you for all the calls, text, emails and cards. Also thank you for all the meals, gift cards, and donations doctor appointments, gas, and medicine can get very expensive and every little bit helps.
It is nice to know that we are not walking this battle alone and that we have people helping us to march forward.
Left the hospital a little while ago, he seems to be doing much better today. He actually talked and joked with us for about an hour before the meds took effect and he drifted back to sleep. as long as they keep the pain meds on board his headache is manageable. They did start him on some strong IV antibiotics since he kept running a fever. They did culture his blood to see if anything grows, this will take a few days for results. Tomorrow the doctor will do the brain mapping and then discuss the results with us on Tuesday and whether he thinks surgery will be successful. The game plan has drastically changed since they were able to find out exactly where his seizures are coming from. They are coming from a much more difficult area that poses a lot more risks. We have a lot to think about and appreciate the thoughts and prayers.
I know that you look at him as patient that happens to have a tumor and seizures.. and your goal to is fix him.. but please remember he is not only your patient but he is also a husband to a wife who loves him dearly, a father to two little girls who need him, a wonder friend to many who love and care for him, a son to our heavenly Father, and the breadwinner to his wife and daughters... so when you make these decisions and I question you, its not because I doubt your expertise, its because he means so much to so many and without him we would be lost. So please remember this and care for him like you would your own.
This was yesterday before surgery, They had to place these stickers all over his head.
Yesterday- prepping Roy for surgery
So i just got off the phone with Roy's ICU nurse and got an update. I forgot to ask about his seizure medicine and if they had started the tapering off yet. It's so hard to try and remember everything to ask. I can't afford gas to drive there and back plus parking everyday, but I am going to go there tomorrow. I will feel so much better when I can see him.
This is what the ICU nurse told me....
He is awake and alert, they took the breathing tube out last night and took him off sedation. He is in pain (worse headache imaginable) so they gave him morphine. He should get to move out of neuro ICU and on to the Neuro/EMU floor today. He can follow commands and move all his limbs. The only thing right now that is a concern is he has some right side paralysis on his face. It is only evident when he smiles. The doctors are aware of this and I was told it was probably from the bleeding he had during surgery and it should resolve itself, but they will keep close eye on this.
Continued prayers please..
Well today Roy had his first of two surgeries. They took him back around 9 this morning and finished around 4. They were able to get the EEG probes where they wanted them, he did have some bleeding but that was to be expected. The probes were a little tricky to get exactly where they wanted because the tumor is so large and extensive and goes into the mid-line of the brain. At this point it has not crossed over (which is very good). They are planning to taper his seizure meds tonight and try and start to stimulate seizures tomorrow. It is all so scary. I feel so overwhelmed.
Please continue to pray for us.. I just left ICU and Roy is pretty swollen and has a breathing tube and several iv's and other things. He is still sedated, we are waiting on the MRI and CT scans to be done. They want to check for bleeding, swelling, and correct placement. Once that is completed and ok from the doctor they will try and take the breathing tube out tonight and take him off sedation. I haven't been able to speak to him and I just saw him briefly in the ICU. It is so hard to see him like that. I think I will breathe a little easier when he is awake and can speak, follow and understand commands, and move all his limbs.
I will update again when I know more.
Yesterday we met with Roy's surgeons and talked about his surgery. He has some pre-op appointments that need to be done before, but everything is still ago for next week.
This is what his schedule will look like. On Wednesday morning he will go to the hospital and have a CT scan done, after that will be taken to the operating room. In the OR they will make an incision (pretty big cut) and place the EEG probes directly on his brain then close him up leaving the wires hanging out to plug into the EEG machine. This should take about 5-6 hours. Afterward, while still under anesthesia they will take him to get a few more scans and then onto ICU. He will be in ICU about 24-48 hours, he will then be moved to the neuro floor where they will try and stimulate seizures and do the brain mapping. very scary.....
Ok next one of two things will happen. If they determine surgery is NOT and option they will take him back to the OR, open him up remove the EEG probes and then close the incision or if they determine surgery IS and option, they will take him back remove the EEG probes and the part of the brain tissue and tumor that is causing the seizures.
As you can imagine there are a lot of risks with this type of surgery- some are infection and clots (since he will have two surgeries within a week of each other) others are left side paralysis and loss of vision. I want to remind you that this is not something we have entered into
lightly. These doctors have had meetings after meetings about Roy's case and have talked at great lengths to us. They have made it clear that this is not a cure and will not extend his life, but they are hoping to give him a better quality of life. We realize that only God can determine how long you will walk on this earth, we just pray that he lets Roy lead a long and prosperous life and that he gives these doctors the wisdom and steady hand to help my husband through this.
These next few weeks are going to be some of the most challenging so far, so please keep our family in your prayers.
Christmas has now come and gone and as I sit here with the end of the year fast approaching, I look back on what has been a heck of a year. I am so very thankful at what God has done in our familys life. He brought so many of you into our lives to go on this journey with us. You have given to our family so generously, and for that we will always be thankful.
A few months ago, we had no idea how Christmas was going to be possible for our children. We had many sleepless nights just lying in bed trying to figure out how we could do anything for our girls. They do understand that Christmas is not about getting presents but still we did not want them to not have anything to open Christmas morning. We hoped and prayed for an answer. Many tears were shed by me, and God heard our prayers and cries and he answered them through great people including our church family, friends, and many people we had never even met before. With overwhelming kindness we were blessed. Our girls awoke to a Christmas morning with things beyond ours and their wildest dreams. Roy and I were absolutely blown away at your generosity. You gave my children more than just gifts, you gave them hope and the power of Christ to make things happen when you think you have hit bottom. I know many of the gifts were anonymous, but I just wanted you to know how grateful we are. God is great and we have never been shown that as much so as over the last few months. This has made us become even closer in our relationship with Christ and our walk with him. We have made many new friends and become closer with our church family. We can only hope to someday be in a position to show another family the power of Christ when things seem to be at their worst and you don't see a way out. Again all we can say is Thank You so much!!!
Our girls can be kids again. They can play with their gifts and not have to worry about other things going on in our family. Thank You again for showing us the good heart of man and the Power of God in putting the right people in out lives.
The Willard Family
We were gone all day yesterday for Roy's neurocogntive testing. They said everything looks fine, it looked just as they thought it would. So now on Wednesday he goes for his PET scan, and I guess as long as nothing new or suspicious shows on that, we can proceed with the surgery. The doctors are dotting their I's and crossing their T's which is fine with me, I want them to be completely prepared before they start operating on my husband's brain. They are still shooting for the 22nd for the probes and the 29th for the resection. He has been having more of those break through left side seizures (the ones where his whole left side goes numb and it jerks and twitches)
Freaked out a little yesterday evening. Breanna and Cheyenne were playing around in the house and somehow Breanna fell out of a dining room chair and it fell on her. I was in my bedroom folding clothes, and she comes in there crying holding her head. Yep, there was a HUGE knot, and it was on her right side between her eye and ear, right on that bad side of her face. The side that has the plexiform neurofibroma the side the doctors told us to be careful of. I called my friend a few houses down who is a nurse and she walked down to look at it. We put a bag of corn on it (didn't have a ice pack) and gave her some ibuprofen, and that helped. I just checked on her a few minutes ago and it looks a lot better than it did last night. I think I am going bubble wrap her and Roy.
So Dr. Hadar's (neurosurgeon)nurse called today and it looks like this is the tentative schedule. They want him to come in on January 14th for a pre-op visit and at that time we will get answers for all of our questions. Then on January 22nd they will start the Phase II testing. This is where he will go into the operating room and they will placed the EEG probes directly on his brain. He will then go into the Neuro ICU for 24-48 hours and once he is stable be moved to the neuro floor. He will then be monitored until the 29th, on that date he is scheduled for his actually tumor resection. The nurse had said he could be in the hospital 2-3 weeks. I am not sure if she means total time or recovery time after the resection.
Next week he has a few appointments at UNC that have to be completed before they proceed. This has been a long process between the chemotherapy, endless doctors appointments and hospital stays, daily seizures and blackouts, and the vast amount of medication he takes. I know that this will not prolong his life, but hopefully it will give him a better quality of one. I know this has to be scary for him, because I am scared to death. It is so hard seeing him go through this, and what it has robbed him of. Also it is incredibly hard on the girls, please keep them in your prayers. They have already been through so much, Breanna especially, now they are watching their dad battle this... Please pray for my husband, my daughters, and that God will give me the strength to hold it together for all of them.
Please continue to pray for our family.
I hope everyone has a joyful Thanksgiving. My parents are on their way here from Florida to spend it with us. They are brining my 9 year old nephew, so the girls are super excited. It will be nice to spend Thanksgiving with them. Its been about 5 months since I saw my parents (they were up here in June for Breanna's birthday) and about 2 years since I saw my nephew.
Roy heard from one of his doctors today.. Shin, Hin, Wu, Hadar, Chestnut.. What a combination of names! but anyway, Dr.Shin's assistance called and said she has got Roy set up for the neuropsychological evaluation and a PET scan for December 9th and then on December 12th an appointment with a neuro opthamologist. After that his doctors will meet again and see when they can get the Phase 2 testing scheduled, it will all depend on the neurosurgeon's schedule and when a bed is available in the EMU floor. I guess this may happen this year, I hope though that they can push it off to January. I am still not sure of the details of the actually tumor resection. I dont know if they will do the Phase 2 and the surgery in the same time frame, or if they will do the Phase 2, keep him for the 10-14 days, send him home and then bring him back at a later date for the surgery. We will find out more information when we talk to the surgeon.
Please continue to keep my family in your thoughts and prayers. These next few weeks and months are going to be very scary.
I feel sick, deflated, angry, just about every emotion there is. As of this moment we are waiting for a bed at the hospital for Roy. His doctors were concerned about the incident that happened on Sunday that they want to admit him for further testing. They said they would call when they have one available.
So I guess we begin the merry-go-round again. Maybe this time, something will actually get accomplished. This past year has been so incredibly hard. He has been in the hospital so many times that I have lost count- if I had to guess I would say around 5- with each stay probably being 5-11 days long. Then he was out of work on disability for several months due to all of this. Which caused a downward spiral and now he is once again going back into the hospital. I mean imagine if your husband or wife had to go into the hospital not once, but several times, and for several days each time and they were the sole supporter of your family. Then add in all the doctor appointments, medicine, and treatments not only for him but for two other members of your family also. The holidays are coming up and there will be nothing under our tree. How am I supposed to stay positive?
In the past, we have always tried to help others out, grabbed an angel here and there from the angel trees, and now this year we are the ones in need.
I am so tired of this. Why, why can't we just be a family with normal everyday problems? Do you know how exhausting it is to go to the doctors all the time and never seemed to get anywhere? This has been going on for 3 years now, with the seizures becoming more frequent this year. He has been on chemotherapy, talks of radiation, and now possibly surgery. I am trying to balance everything and it is just so overwhelming. We need lots of prayers and comfort.
Well we had a fun morning, before church Roy blackout and fell twice. The second one he fell and hit the wall in our bedroom and we now have a nice hole there. Just lovely!! It also took a long while to get him to come around. He opened his eyes but it was like he wasn't there. he just keep staring at me. I kept calling his his name but nothing. Finally he just "snapped out" of it. When he has these types of episodes, his doctor thinks they are seizures. It was all very scary! I walked by and think he fell so hard that when his head hit the wall he knocked a hole there, a mean a hole!! How can that be good? We were however able to make it to church, but I was just zoned out. It is just too hard. I am constantly worried all the time. I am not asking for an easy life, I am just asking why cant we have the "normal" everyday problems like most people? Why do I worry everyday that this is gonna be the day that he falls and breaks his neck? Like I said, we have our good days and our bad ones.
Well we heard from Roy's doctors this week. They want to admit him to the hospital December 1st for 3-5 days for more testing. They have spoken to the tumor board here and the doctor in Chicago and they all seem to be in agreement about this and once the results come back from these testing we go from there.
Now, as you can imagine Roy does not want to go back into the hospital, since he has spent much of this year in/out of it and is so close to the holidays and Cheyenne's birthday. We are so tired of all this, if he goes back in that means missing more time from work, and we are still trying to crawl out of the hole we got into with all these other times he was in the hospital. His doctor feels like this is the best option and we want to do whats best for Roy, but it is just so hard.
Roy has his good days, where he takes one nap, plays with the girls, and seems to be a hint of his old self and I think he's good, but then he has days where he can hardly get out of bed and has dizzy spells, double vision,fainting spells, and those left side tremors. I never know what the day will bring, I just got to hope and pray for the best.
Tests, tests, tests! It seems like they are always ordering tests. We met with the Cardiologist today, and he ordered an ultrasound of Roy's heart, which thankfully we were able to do in his office today. We should find out the results from that by the end of the week. He also ordered a stress test, that should be set up in the next week or two. Right now he is trying to eliminate things. He did say the one episode that Roy had a few weeks ago, sounded like it was a mild heart attack. Scary!
Next we saw his neuro oncologist and that is a long complicated story... I will try and summarize it the best I can. His tumor appears to be stable- this means it does not appear to have grown, but she thinks that on the inside of the tumor itself, that its changing. She sent his reports over to the radiation oncologist to get his opinion. We also talked at great lengths about surgery. She is going to talk to a local neurosurgeon about possible doing a small resection. She would like to do an epilepsy surgery, that way hopefully they will be able to determine on what part of his tumor is sending out the signals that are causing his seizures and remove that part. She did ask us if we would be willing to go to Houston, Texas for the surgery, but I told her we just don't have the funds for that. It appears that the other morning when I could not get Roy awake, he had a "silent seizure" in his sleep. His doctor wants to get his seizures under control, because she said eventually the part of the brain that keeps seizing will die. There is no absolute cure, nothing that is going to prolong his life but what it can do is give him a better quality of life.
Roy is still having his black out episodes. He passed out twice yesterday, once in the morning and the other last night. The one last night happened when he was walking down the stairs, which of course cause him to tumble all the way down the stairs. He does have an MRI coming up this Saturday, and then appointments with the cardiologist and oncologist on Monday. We will discuss the results from the MRI and the reading from his heart monitor. I am anxious to hear what they have to say. Hopefully we will get some answers. We can not continue to go on like this. One of these days, these blackout will seriously hurt him.
We are meeting with some surgeons the middle of November to talk about what needs to be done with reconstructive surgery for Breanna. This will go over the long complicated process of what needs to be done and the time frame of it.
Our family as been through so much and my heart is just heavy anymore. I know your supposed to look to the Lord, but it does get discouraging after a while.