When is enough... enough? How much crap can one family take. Haven't we already been through enough? Does God just not like us, is he punishing us for something?
I mean what other explanation would there be for all the crap we have been through?
Not including all the medical stuff our family has had a run of bad luck the last five years...
It all started with the house we were renting... It seems like the owner stopped paying his mortgage and didn't tell us. We didn't find this out, until the sheriffs office showed up at the house and told us we have 30 days to evacuate because it was being sold at auction. So in 30 days, we had to find a house, put an offer down, go through the whole buying process, and then move all while my husband was recovering from brain surgery.
We moved into this house and in that last few years the bottom just fell out. We have had the septic tanked pumped twice because the first time we had it pumped it was not done correctly, so together it was around six hundred dollars. We have had to have a replace the downstairs ac unit, that was like two thousand. Lightening has struck our garage door opener and septic pump, both needed to be replaced, that was another thousand. New dishwasher and washing machine, about six hundred. Refrigerator stopped working and needed some parts replaced on that.. I think that was three hundred. Stove stopped working, that needed worked on. Upstairs ac unit had to have some work done that was several hundred dollars only to have it go out completely a few months later and now we need a whole new unit. Several things went wrong with my van that needed work, that was around thousand dollars.. Then having it catch on fire was fun. Had to scramble to get a replacement car. Two weeks ago we had to have new front wheel bearings put on my car... several hundred dollars. Now our drain field is bad.. Not sure what we are going to do. We have absolutely no money to fix it.
So please tell me how a house that is only around thirteen years can have so many problems?
If you can please donate, anything will help. I am just at a loss right now.
Where to begin...
Yesterday we met with yet again some more doctors concerning Breanna and her surgery. This time we met with an ophthalmic plastic and reconstructive surgeon. He would be there for the debulking of her eye socket, sinus cavity, and eye brow part.
The doctors are still talking and laying out their surgical plans, but it looks like we might do the surgery this summer possibly July or August. We have decided to try the less invasive surgery first, the one with the implant. Most of the doctors we have talked to are in agreement that this is a good place to start. We just don't want to put her through another craniotomy unless we absolutely have to.
Cheyenne had her appointment today with the NF neurologist and everything looks good. He has an MRI scheduled for her just as a precaution. The scoliosis he noticed is very slight and he does not think it will get any worse or cause her any problems.
We did have the rug pulled out from us a little today. While he saw Cheyenne, he took a quick peek at me and found something.. um.. unexpected. He felt a mass on the back of my skull, kinda in the middle of my head. It has been there for years and I never thought anything of it. He asked if I get a lot of headaches. He seems to think it is the same type of neurofibroma Breanna has, a plexiform neurofibroma. He is ordering a MRI to confirm and referring me to plastic surgery for treatment.
As always, please say a prayer for our family.
I can pull verses from the bible and seem all philosophical but right now I am pissed. I do love and believe in God but I am angry and hurt. I don't understand why we are constantly facing these trials. Why it seems never ending. We did everything right, my husband had a good job. He busted his butt to supported our family. He was moving up the ladder with the company. We had savings and 401K. My children never went hungry, always had a roof over their heads. They even went to private school when they were little. But artificial eyes at $1800 each, chemotherapy, endless doctor appointments, travel to and from doctor appointments, parking, and everything else had us dipping into savings. Then my husband losing his job and no income for six months until disability kicked in, we had to liquidate his 401k.
I am thankful that we get disability but it is less than half of what his salary was and it is to much for any assistance. So each month we barely keep our heads above water. Bills sometimes go unpaid, home maintenance gets pushed to the side. I am always telling the girls no because we just can't afford it. We still have not fixed the upstairs heating and air. We just don't have the extra money to put in a new unit. I just started school to try and better myself so I can support our family, but that takes time. and between Roy and the girls doctor appointments, plus school for them I am stretched thin.
Last week we had doctor appointments pretty much everyday and this week is more of the same. That means gas, parking, and co-pays.
We are dealing with both Roy and Breanna's chronic illness which there is no cure for either. They are just trying to manage Roy's and keep his tumor dormant.
Breanna's is so complicated that it even makes my head spin.
Today we met with two surgeons and they both have very different ideas.
One laid out a exceedingly complex plan that involves multiple surgeries and several surgeons. It would involve cutting bone, possibly removing the bone flap that protects her brain, orbital reconstruction, possible facial nerve damage, along with many risks. At the very least he was talking two to three surgeries. She would spend probably a week in the hospital baring no complications.
The other was less invasive but is still a big surgery. It would still involve several surgeons but would not be any bone removal or a craniotomy. Instead she would take the scans and send them to a company that specializes and makes facial implants. There hope is to try and take a mirror image of Breanna's left side and apply it to her right side. Her right orbit is excessively larger than her left (like comparing a grapefruit to a grape). The implant would fill in some of that space. She would also try and debulk what she could and fill in the side of Breanna's face that has caved in with fatty tissue. This surgery would not be correcting any bone, but instead making her face appear symmetrical. Recovery time would be around four days hospital stay.
None of these surgeries include the jaw surgery that she would have to have. Now he is talking about putting that off until she is closer to 17.
Both doctors are going to discuss their recommendations to each other, then the cranial facial doctor will call me. I should probably hear something by the end of January. The soonest surgery would be, would be in July or August.
We are just trying to decide what is best for Breanna. It is a tough weight to carry.
We are still waiting to hear back from the doctors about Cheyenne. They have the referral, now it is just waiting to get her an appointment.
Roy sees the nuero ophthalmologist tomorrow to discuss his double vision.
It just seems "heavy". There does not seem to be a light at the end of the tunnel. There always seems to be something that comes up. New hurdles, new trials, new issues.
It looks like 2016 won't be slowly down anytime soon for us. We met with the NF doctor today regarding Breanna. He mentioned a possible clinic trial that he would like to get her into that is having great success with these large complex plexiform neurofibromas. The NIH is sponsoring it, so she would have to go out there initially, but afterwards he should be able to follow her locally.
These plexiforms are very scary because they will continue to grow at about a rate of 1% of their size (and Breanna's is quite large) a year. They also wrap around your nerves which makes them very difficult to remove or debulk. Hopefully this scan today will gives us more concrete answers, but it looks like the one in her face is wrapped around her facial nerves and if removed she could lose sensation in her face. We are dealing with many complex issues when it comes to surgery- her facial nerves, bone damage, chewing and jaw issues, risk vs benefit factors... just a lot to think about. He definitely thinks something needs to be done, but he thinks it might be more bone molding and shaping of her face and not much tumor debulking.
He also wants to see Cheyenne because he did a quick peek at her today and is concerned about scoliosis and neurofibromas along her spine so he wants to do a full body MRI.
We go back next week to talk with the surgeons about Breanna, by this time they should have the results back from the scans.
Thursday we see Roy's doctors and he has his MRI. He still is having daily seizures. I know they are going to once again recommend chemotherapy, but unless something has changed with his tumor he does not want to go through that again.
Later this month he sees the neuro ophthalmologist and the neurologist.
Lots of things going on, so please continue to keep us in your prayers.
I also want to thank everyone for all the donations and gift cards. They help out tremendously with things like gas to and from doctor appointments, parking, and other things that arise.
Breanna has her scan this week, so that means another trip to UNC. We probably won't hear anything this week since Christmas is Friday.. This is the first time I can remember that I am not into the Christmas spirit. There is just so much going on in the world, so much happening in my family, it's just a lot to try and take in. We still have to decide if we want Roy to do another year of chemotherapy... the doctors still can't get his seizures under control. It's so hard trying to put into words how we feel. Roy will never be cured, they will never be able to get all of his tumor (that's even if we could get a doctor to operate on him).. So every two to three months when he goes for his MRI we hold our breath, our hearts in our throats, and we wonder if this is it.. will this be the month his MRI shows change, will this be the month we are told those dreadful words.. "your tumor is growing"
And Breanna, my beautiful head strong daughter, my first born, she made me a mom, she taught me what motherly love is. From the moment I found out I was pregnant, I loved and wanted to protect her. How do we even start to make these complicated decisions, everyone says "well she is old enough to have a say" She is fifteen, how can I at 38 struggle with the complexity of this, expect a 15 year old to understand.
This is something she will struggle with her whole life, something that will have to be monitored. Her tumor is slowly growing and it will continue to cause more damage. I don't know what their plans will be once they have the imaging scan. Everything is just "talk" right now about what they think they can do. We see the neurologist in January and will see what he recommends. Breanna still has facial pain now and then and they said that will probably get worse and want to put her on medication for it.
Not to add anything else to the pot, but my migraines have become a daily occurrence and my doctor wants me to see a neurologist especially since I have the same genetic disease ( neurofibromatosis) Breanna and Cheyenne have.
Please continue to keep my family in your prayers.
Its hard to believe Christmas is only a few days away. This year with everything that has been going on, it has been hard to get into the Christmas spirit. I have been reading my Bible more and trying to find comfort in that.
I heard back from the cranial facial doctor and she scheduled Breanna for her scan next week and after she reviews it she will call us. Due to the size and complexity of Breanna's tumor, nothing will be easy or a permanent fix. They will never be able to completely remove it and it has already done extensive damage to her facial bones and structures. If we do nothing it could and probably will get worse, if we opt for surgery, it could only be temporary. Her last MRI showed some slow growth compared to the previous one. We meet with the NF neurologist in January.
Roy is still dealing with vision issues. If he gets up and starts moving around he gets double vision. We have spoken with the doctors and they seem to think it may be do to medicine since his last MRI showed no change from the previous ones. They keep tweaking his medications- adding this one, taking this one away, lowering the dosage and nothing seems to work. He still has daily seizures some days are worse than others.
There is another factor in Breanna's surgery, she will have to be in the hospital a few days and I cant be two places at one time. Someone will need to stay with her and someone will need to be here in case Roy or Cheyenne needs something.
We still have a lot to talk about before any decisions are made. Please continue to pray for us.
Stressed does not even begin to describe what we are feeling. Today was a very long day. We had a consult with the cranial facial team and our heads are swimming with all the information.
So first the team will meet on Tuesday and discuss Breanna's case. They will then contact us and talk about what they recommend. Today we talked about two very different surgeries.
One was involving her jaw and bite. The maxillary surgeon would want to put her back in braces for about a year to get her teeth where he needed them for surgery. He would make several cuts in her mouth and basically put her jaw together like a puzzle, he would also bring her chin out to try and get everything lined up. This would change the shape of her face some. Her mouth would have limited chewing ability for 6-8 weeks, basically she would be on a soft food diet. She would be swollen for a while and this is a painful surgery. It would require a hospital stay for about 4 days and of course there would be risks. He also wants her to gain some weight to make up for the weight she would lose with this surgery. Anyone who has met my daughter knows that she eats nonstop and doesn't gain a pound. She has had test ran and they all say the same thing she just has a fast metabolism. The earliest he would want to do this surgery is next September or October.
The other surgery would include her face and its bone structure. The craniofacial doctor talked about several things she would consider. Some things included re-positioning her nose so the right nostril doesn't turn in, bringing the right eye orbits up some so it appears more symmetrical with the left side, and some debulking of the plexiform. This would also be a very big surgery.
They cannot do both of these at the same time, so things would have to be done in stages.
Both doctors want a CT scan and a 3D model done so they can study and plan according without surprises.
They also want her plug back in with a neurologist and neurosurgeon.
A lot of this was just speculations and what they think they could do, they of course would have to wait to discuss it with the team and get the scans done. Maxillary also wants to contact Breanna's orthodontist to talk to her.
I don't know if it matters what surgery is done first.
We just have a lot to talk, think, and pray about.
It just doesn't seem fair that we are having to make decisions like this. I wouldn't wish this on my worst enemy. What ever decision we make will have a direct effect on Breanna and her life. How do we even begin?? Its just not fair! I am tired of making these life altering decisions. Next month if Roy's seizures don't improve he will have to make the choice of whether or not to go back on chemotherapy.
Breanna is out of surgery and home resting now. The surgery was successful. They ended up only taking out the plate(hardware) that was on her wrist, leaving some of the other screws. The tendon from her thumb was rubbing over it and was quite inflamed and irritated. He seems to think that is what was causing her pain. They also removed some scar tissue.
She was quite sore when she came out, but the nurses and doctors were great and quickly got some strong pain meds on board.. She will be in a soft cast for two week and then just a splint.
I am very thankful the surgery went well. Thank-you for all the thoughts and prayers.
So much is happening in the world, it makes you stop and think. We are never promised tomorrow, sometimes we just need to stop... stop and look around at your friends and family and cherish them.
Roy and I have discussed it and unless something changes with his tumor or his seizures get dramatically worse , he does not want to do another year of chemo. It just takes so much out of him, its hard on his body, the side effects are just not worth the benefits right now. I mean chemotherapy for seizure control and not even complete seizure control just "it may help a little" is just not something he is ready to jump back into. He is still on and would have to continue all his other anti epileptic medications. Its still early and things may change before January, but right now he just wants a break from the chemotherapy. Since February of 2011 he has done 3 years of it.
Breanna's surgery is scheduled for Wednesday. Please, please say a prayer for her. It is an outpatient, so she will get to come home that same day.
Last week we had a little scare, her MRI came back with a "spot" on it that was different from her plexiform tumor. A neurosurgeon was called in to consult and finally on Friday we heard back. He feels that it is nothing to be concerned with right now and he just wants to watch it with yearly scans.
I wont lie, didn't get much sleep last week. This week isn't proving to be much better. With Breanna's surgery coming up and that stupid anesthesia consent form that I have signed a million times, but every single thing that can go wrong is listed. Its like ok, we have done this too many times to count, but how many times do you risk it,
I know, your not supposed to worry your supposed to trust God, but its hard.
What ever Roy and I decide for Breanna will effect her the rest of her life. That is a hard decision for any parent.
Not only do we have to make decisions on Breanna's medical care but also on Roy's too.
In a few weeks we will have her visit with the craniofacial team, I cannot stress enough how important that visit is.
Like I said before, stress does not even begin to describe our household.
In a few short week Christmas will be here, that just means more stress.....
Is it only Monday???? What a trying couple of days. So Roy has still been having double vision and more of the bigger seizures , I called his neurologist last Monday and we finally heard back from him Friday afternoon. He wanted Roy to come in at 9:00 that night for an MRI.
So we spent a majority of Friday night at Duke waiting on Roy to get his MRI. Then Sunday we headed to UNC for Breanna's turn on the MRI table. They were running a good two hours behind schedule. Then today we got to travel back to Duke for his results and to talk about what has been going on.
Basically they have no clue. His MRI looks the same as always, very little to no change. They can not figure out why he is having more seizures and double vision. Their solution is to put him back on chemotherapy. They want us to talk about it and let them know when we go back in January. That is the best they can come up with... another year of chemo.. Really??? How much chemo can one body tolerate? He has done it for three years. What about the long term side effects?
Oh they finally got him into see a neuro ophthalmologist, but that appointment isn't until the end of April.
His neurologist changed one of his medications again.. Now this one comes with a whole slew of new side effects. Can cause live problems, low sodium, suicidal tendencies, most common sides effects are - double vision, dizziness, blurred vision, nausea, sleepiness, coordination problems. Umm, wait! Isn't that the same problems we were having before and now you want to put him on a new medicine that causes all of these? It makes you wonder why even bother.
I am just so frustrated!!! We can never get simple straightforward answers. Its always this or that, and every time we go, we always get told something else.
We still have Breanna's pre-op visit this Wednesday, which means another trip to Duke and then surgery next Wednesday. Coming up next month we will be at UNC hoping to get some answers with the craniofacial team. Still waiting on Washington DC for her NF appointment.
Please pray that we will get some answers and have a little less stress in our lives.
I set up this account to help with some of our financial burdens .
My husband lost his job and is now on disabilty due to an inoperable brain tumor. My oldest daughter has a rare genetic disorder requires several specialist to follow her care.
Right now I am taking classes so that I can better myself and try and support my family but it gets hard between the endless doctor appointments and surgeries.
My husband is unable to drive due to his daily seizures associated with his tumor. As we speak doctors are discussing several surgeries for my daughter, one as early as this summer and to top everything , just recently the doctors found a spot on the back of my head that they want scanned and I need to meet with some surgeon to discuss treatment