What a long day, in fact what a long week.. Started out with our hot water heater breaking and went down hill from there..
We have been at Duke all day, Roy had his round of appointments today. The first one started at 10:15 and he has his last at 3:30.
MRI is stable, yay!! But seizures are still a daily occurrence. The oncologist feels that she can now move his MRI out to every twelve weeks instead of the eight he has been on.
Next week we meet with the surgeon about his VNS, next he has pre-op, then surgery is June 15th. I hope and pray that this helps some. It won't be a cure, but hopefully it will decrease some of his seizures.
Breanna surgery will be coming up soon. So many emotions with it. It hard enough for me, I can't even imagine what she is feeling. She is not a big talker about stuff like that.
I think when we meet with the surgeons next month, to finalize everything, sign paper work, and do all the pre-op it will start to hit home. They did mention the possibility of a blood transfusion because these particular tumors tend to bleed a lot. That scares me. Also Breanna is prone to post infections, she tends to get them more so than others following surgeries.
The next few months are filled with doctor appointments after doctor appointments. It's exhausting just thinking about it.
Ugh, summer has come at last.. Heat, humidity, and rain.. Not loving it, lol especially since our air upstairs is out. Spring and Fall are my favorite seasons, you can see all God's beauty..
Well it looks like the first week in August will be Breanna's surgery. Its kinda surreal. We have be hoping and praying for this, but now that it is here.. I am scared to death. This is my daughter, my baby, and this will be a very big surgery. I am excited for her, but my mother instincts just want to protect her from. She will be in the hospital about a week baring no complications and the home to recover. Its not fair, she has been through so much already.
We will meet with the surgeons next month to go over and finalize everything, but from what we have discussed in the past, its going to be a very long complicated surgery with multiple surgeons involved.
I had my MRI a few weeks ago and I am just waiting to hear back from the surgeon about my results and about my surgery date.
We are still waiting to hear from the neurologist about the VNS for Roy. His seizures are pretty consistent. He has so many a day he has lost count. They range from small to big. Seizures are a complicated thing. Often times they do not present themselves as you see them on tv. On tv you always see the grand mal, but that is not the only types of seizures. There are several types. They are all scary and I hate seeing him go through them.
Along with his seizures he has almost no feeling in his left leg now. Not sure what the cause of that is, if its the tumor, seizures, or a combination of both. We see is oncologist next week and he has his bi monthly MRI. Prayers that nothing has changed.
Our family is dealing with a lot, so please continue to pray for us.
Finally heard from the doctors today and we have a tentative surgical date for Breanna. It will be in August. The are booking the whole day in the OR for her, so it will be a very long, very complicated surgery. She will probably spend about a week or so in the hospital and will be very swollen. We meet for a final conference in June to go over the details.
I can remember her surgeries in the past and how much she swelled. One surgery she had when she was just three years old, I walked into the PICU and I almost fainted. She was unrecognizable, because of all the swelling, bandages, and tubes coming from her body. I hate this disease and everything it does. It is like a tornado, you hear the warning bells, try and prepare yourself, but it hits everyone differently. The symptoms range from one person to the next. One family barely effected, whilst the next it destroys everything in its path.
This will be part one, after a brief recovery time she will go back into braces and the doctors will start preparing her for the next phase of surgery.
June will be a big month for her, she will be turning 16 and I would love to do something special for her, especially with all that she has been through and all that she will have to endure.
Her NF neurologist has mentioned that there is a clinical trial going on in Philadelphia with a type of chemotherapy that has shown some progress in stopping these tumors from growing.. So if that continues to show progress, that may be something we can turn to in the distant future, but not something we wish to pursue right now with such limited results and data. She has done clinical trials before that have high promises that only lead to disappointment and it just is not worth it at this time.
Roy's brain tumor is still stable, but he continues to have increased seizure activity. He still has to get MRI's every eight to ten weeks and we are told every time we see the doctor that these tumors can change at a drop of a hat and may start to grow or change. We were also told that more than likely he will have to go back on chemotherapy at some point.
We are still deciding on the VNS implant, Vagus Nerve Stimulator. We watched the video that they sent and of course they make it sound like the best thing ever but its like a pacemaker and it will require surgery and its not a guarantee fix. The best case scenario is about a fifty percent decrease, though his doctor is suspects in Roy's case it will be much less than that. His seizures have gotten so bad though that we really don't have many choices left. He is already on a high regime of medications and this could help him get off some of those. With the VNS though he cannot have MRI's of the neck or chest and in about five to eight years, he would have to have the battery changed which would mean another surgery.
They have scheduled my MRI, just waiting for insurance to approve it. Hopefully everything will be fine with that. I don't think I can handle anymore bad news or stress at this point.
As if we don't have enough stress already, my surgeon called todayand
something came up on my MRI so she is ordering additional scans.
She said she also may need to bring in a neurosurgeon. Please pray
for my family. As of right now my surgery is on hold.
We met with Roy's neurologist yesterday to discuss his increase in seizure activity. Unfortunately we do not have many options left. The location and type of tumor he has makes everything very difficult. First his neurologist wants to increase one of his medications to see if that helps any. He said we should know in about two weeks or so. If that doesn't work he wants to try a VNS implant- Vagus Nerve Stimulator. Its kinda like a pacemaker but for epilepsy. It will require surgery and a night in the hospital. A neurosurgeon will preform the surgery, Its not a guarantee that this will work, best case is it helps with a reduction with about 50% of his seizures. He will still have to be on medication but they are hoping to bring the quantity and dosage amounts down and improve his quality of life at the same time. He gave us a video to watch and some literature to read. This does have risks and he will have to be careful with MRI's and stuff.
I met with my doctor today and they are going to try and schedule surgery to remove these plexiform nuerofibromas- one on my shoulder, my side and the back of my head. The one on the side of my face she will not touch because of the location to my facial nerves. She said that the risk of bleeding is high but hopefully I wont need a blood transfusion and as long as no complications come up I can go home the same day, I just cant drive myself home. I will have to have a drain shunt and they will make a small incision in the back of my head.
Thursday Breanna has her round of doctor appointments. I do hope to be able to get some answers regarding the time frame of her surgery. This is getting ridiculous.
Today Roy has his MRI hopefully we will be able to get some answers about his foot. He is still in a lot of pain and having a hard time getting around. We should get a punch card for MRI's like you do at sub shops after the 10th one the 11th is free.
Still haven't heard back from his neurologist its been about a week now since we called.
Breanna's case is become one big complicated mess. Ill try and describe it the best I can.
Their are not many options for surgical doctors that deal with nuerofibromatosis. This effects your body differently and it take someone who has knowledge dealing with these types of tumors and the destruction they can cause. I think a few that I know of are in Houston, TX and Washington DC.
Breanna tumor looks like it has been growing but the only way to be sure is. is to have an MRI. They don't want to do this because she will have to have one closer to her surgical date which last we heard was in July or August. Her pediatrician has been trying to get a hold of the main surgeon but this is proving difficult. She is on leave until summer and her nurse keeps putting up road blocks. Breanna's pediatrician told the nurse she just wants a "tentative date" because everything revolves around this. She expressed her concerned since Breanna is having more complications (loss of feeling, possible tumor growth, darkening of the area) but since its not a emergency she is hitting a wall. We have been trying to get some answers since the middle of February. I spoke with her pediatrician and she said she is now going to try and talk with one of the other surgeons that will be involved with Breanna's case because she is beyond frustrated with this nurse.
We have also talked with Breanna's neurologist and he said currently all the medical trials are full and there is not a current drug on the market to help her, the only option is surgery.
I just want to scream.
I feel like I am playing Jenga everything depends on this surgery and if I pull the wrong block out, everything falls apart. this surgery is setting the foundation for everything else.
What a gorgeous spring day today!! The girls and I decided to be productive. Cheyenne mowed the front yard and then I mowed the back. Whew, you can get a lot of exercise with a push mower! Then Cheyenne weeded the whole yard. Breanna gave JD a haircut, with a little help from us.
Well Easter Sunday we spent the morning at the ER which that led to a trip to the doctor the following day. Roy did something to his right foot and ankle and over the following weeks it has gotten worse. It was so bad Sunday that when he tried to stand the pain made him fall. So now he can not put any weight on his right side and his left side is so weakened and numb from the seizures that it can't bear much weight. So its quite a sight seeing him hobble around. If we go anywhere he is back in a wheelchair. His doctor thinks he has done something to his tendon so she put him on some steroids to help with the inflammation and ordered an MRI to make sure he has not ruptured the tendon. If that has happened he will have to have surgery. The soonest that they could get an MRI near us is Saturday.
I am still waiting to hear from UNC about Breanna, her pediatrician has even begun to inquire about their plans. She has been trying since last week and can't seem to get any answers. This whole thing is ticking me off, because these are highly specialized doctors and you would think they would be a little more... forth coming.
I sent them another message last night about my concerns and we will see if they respond. Breanna is having more complications with everything.
Everything has to be such a challenge.
In the next few weeks I have an appointment about my MRI results and see the surgeon to hear what he recommends. Breanna also meets with the therapist to see if any modifications need to be made in order for her to start driving.
Not sure what is going on with her arm but she is complaining with pain again in the same area as before. She said it hurts whenever she tries to lift or carry something.
Hopefully we can get some answers soon for everybody.
Well we went from winter to summer back to winter all in one week. Yesterday was cold and raining with highs in the mid 40s. We enjoyed a nice message at church then had dinner with some great friends.
This week is full again with doctor appointments. Today we went in to the girls pediatrician. Brea continues to have diminished feeling on the right side of her face. Her doctor was not happy and was going to start making some phone calls tomorrow. She wants to know what UNC plans are and a time line.
I finally heard back about my MRI and they found two spots both are plexiform nuerofibromas. I am scheduled to see the plastic surgeon next month and discuss removal. I might have to spend a few nights in the hospital, I'll know more when I meet with them. I am also scheduled to see the nuerofibromatosis neurologist next month. He is pretty positive that the plexiform on the back of my head is causing my headaches.
Roy still continues to have seizures and double vision, but we are kinda at a point where there is nothing else they can do for the seizures. His tumor is stable so at least that is a blessing.
I feel like we are at a stand still with Breanna. We met with a lot of doctors, talked a lot about different surgeries and then that is it. The main doctor is out on maternity leave and everything is put on hold until she gets back. No definite dates were set for Breanna's surgery and I know its not something that can be quickly put together because of all the different doctors that have to be involved.
I did call a few weeks ago and spoke with the doctors assistant and she was going try and get some answers and then get back with me. I haven't heard back yet.
Last week we had doctors appointments pretty much every day. We saw Breanna's orthodontist and she wants to put Breanna back into braces in September for about 12-18 months to get her teeth where the need to be for the pending jaw surgery next year.
Its all so complicated and frustrating.. because so many doctors have to be involved and yet none are communicating like they should.
Her orthodontist wants to get her started soon, but wants to wait until she is healed from the craniofacial surgery that they want to do this year that we have no date for yet. Once she's in braces again, things have to follow a precise time plan. The maxillary surgeon (jaw surgeon) has his own set of ideas and is not all that chatty with the orthodontist, but they all need to work together.
Then once Breanna is back in braces it is harder to get an accurate MRI reading because the braces interfere with the magnet. I am concerned with the plexiform tumor because I think something has changed.. Breanna is complaining a lot more that her face feels puffy and weird.. I am just going to half to call her pediatrician and make an appointment, tell her all my concerns and have her see what she can do. She is good at yelling and getting stuff done.
Roy also had some appointments last week. His MRI did not show much change. We saw his neuro-oncologist and she stressed again that he is one of her more challenging patients, in that his tumor is in a difficult area to treat and that his symptoms are just not controlled. We definitely do not want to do chemo again unless it is absolutely necessary and don't want to add on any more seizure medications, but I know he gets tired of having these pesky seizures daily and never know from one to the other the intensity or even when he is going to have one.
His neuro ophthalmologist ran a bunch of test and still can not figure out what is causing his double vision.
Monday I have my MRI and hopefully I will hear something by the end of the week. My headaches and migraines have increased dramatically, though I think that may be due to stress.
Next week I think we have doctor appointments every day but Friday. I swear, its a full time job just running back and forth to doctor appointments.
Oh, I did hear something back about Breanna's driving. We have to take her to a driver rehab program at UNC. They will determine if she needs any modifications for driving.
Please as always, say a pray for my family
I also want to thank you for all the gift cards and donations that have been sent. We are so appreciated of them and they help out tremendously.
Do you know how completely amazing my daughter is? I am in awe of all that she has accomplished This morning I wanted to see thru her eyes, to experience what she experiences everyday so this morning I closed my right eye and try to limit the use of my left hand. I barely lasted five minutes. I couldn't hold the hair brush and hair dryer at the same time, had trouble with my make-up application and this is how my daughter goes through life every single day, day after day. She overcomes each and every obstacle that comes her way. She is truly something!!
I set up this account to help ease some of our financial burdens that come with dealing with multiple family members that have chronic illnesses.
My husband was the sole bread winner of our family but was diagnosed with an inoperable brain tumor in 2010 and since then he has lost his job and is now totally disabled due to his daily seizures , the brain tumor, and the effects they along with all the medication he has to take have on his body. He has already been through three years of chemotherapy. They cycle him on/off to give his body rest. As of right now, there is no cure, just hopes of keeping the tumor stable for as long as possible.
My oldest daughter has a rare genetic disorder requires several specialist to follow her care. This has caused the loss of her right eye, facial and bone deformity, and took parts of her left arm bones. She had endured dozens of surgeries in her young life.
As we speak highly specialized doctors are discussing several surgeries for my daughter,one as early as this summer. They will require several days in the hospital. She has a very long and difficult road ahead of her.
My family has had its share of burdens and any help will be appreciated.