Updated posted by Jennifer Willard 1 day ago
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"..
Updated posted by Jennifer Willard 4 days ago
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.
Updated posted by Jennifer Willard 12 days ago
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.
Created by Jennifer Willard on March 13, 2013
Have Questions? Contact the organizer of this campaign now:Contact
Recent Donations (62)
$4,345 raised by 62 people in 13 months.
1 day ago
1 day ago
4 days ago
22 days ago (Monthly Donation)
27 days ago
27 days ago
1 month ago
1 month ago
1 month ago
1 month ago
1-10 of 62 donationsNext