This past week we had to make a trip to Breanna's hand doctor. She has been having pain and numbness in her wrist and hand. We saw the doctor and he examined her wrist and now she is in a custom splint for six weeks.
Last year after she had her follow up with him, he warned us that if she ever had any pain to make sure we get her in. They are worried that her tendon could be rubbing across the screws in her wrist and after a while it could cause them to rupture; so she is in the splint for awhile to see if the pain goes a way.
If after six weeks we so no improvement in the pain or her symptoms get worse surgery may be our only option. They would go in and remove the screws and plates, which in a person with normal bones this would not be much of an issue but as you know Breanna does not have normal bones in that arm.
Taking the hardware out leaves the bones more vulnerable to breaks because if though they have healed the hardware reinforces them, it kinda acts like a protector. Normal bones when they break heal relatively easily without many problems or issues, but Breanna's bones in that arm don't heal. She has been in casts and splints for years because of the problems with healing. She even had to have a bone transplant. So this surgery is not something the doctor wants to jump into.
Please pray for healing in my daughter.
So yesterday Roy had his MRI and his visit with his neuro oncologist. It was a long and draining day. Its confusing and ill try do and my best to explain it the way we understand.
First Roy has a glioma, the official name of his tumor is an Oliogodendroglioma. His is a lower grade tumor, but it can change at anytime. Roy's tumor is very large and surgery is not an option at this point. They are now treating his "symptoms" and trying to give him a better quality of life. The size and location of his tumor is a main factor in his seizures and since he has been off the chemotherapy his seizure activity has increased. His NO (neuro oncologist) wants him to start keeping a journal of them and when he goes back to her in 8 weeks discuss the results. Its all confusing because there is no straight answer. He will never be cured, this is a chronic disease that he will have to deal with the rest of his life. Chemotherapy, possible radiation therapy, seizure medications, blood work, MRI's are all things that he will have to endure.
His MRI was stable, which all that means is that the size of his tumor has not change and that no new bright spots are visible. MRi's cannot pick up or detect what is going on inside the tumor (cells dividing or dying). That's why they always look for new symptoms ( headaches, dizziness, increase in seizure activity). That is why she wants him to journal his seizures and symptoms over the next two months.
We do meet with his neurologist next month and will get his advise on Roy's increase in seizures and symptoms.
Talking to all these doctors is like asking 20 random people their favorite food or color. You are going to get many different answers, its just trying to determine the best answer out of the bunch. Only we are dealing with my husband's life.
Now on to Breanna. She has been in OT for the last eight weeks and is set to continue for another twelve. They are focusing on eye perception, life skills, along with a few others things. She sees the cranial facial doctor in a few weeks and we will get his opinion on things. This surgery is not about looks, but about correcting some of the damage this plexiform neurofibroma has done. Its about helping her jaws touch, so she can chew better, about fixing the drooping of her face, so her left nostril is not turned almost completely in. Its about giving her some confidence back. Her condition is also chronic, she will never be cured and will have to followed the rest of her life. NF can cause a slew of problems. Most people with NF have trouble with sports, 50% have some form of a learning disability, it can cause scoliosis, headaches, heart problems. These fibromas grow on nerves and some can be quite painful.
Sometimes life is unfair and continues to keep you down and no matter how man times you try and pick yourself up just keep getting knocked down. If everything happens for a reason, then please tell me what is the reason behind all of this?
I swear sometimes I don't know whether to laugh or cry. It seems we are always battling something.
Our upstairs AC unit went out yesterday and I almost fell over when we heard the cost. Its gonna cost around $5,000 for a new unit or they can try and fix it for $1,200 but since the unit is 12 years old, he cant guarantee that something else wont go wrong with it. The AC unit has a freon leak and is leaking about a 1/2 pound of freon a month. They think the leak is coming from the evaporate coils upstairs in the attic.
Last month we just had to replace the van since it caught on fire and was totaled.
Roy's seizure activity has increased over the last two weeks. He has an MRI scheduled for next Thursday. Breanna meets with the cranial facial doctor is September. Hopefully we can get some answers or at least a treatment plan.
Well today we met with the claims adjuster and signed over the title of the van. We have the rental car until Thursday, which gives us two days to find something. Nothing like adding more stress to my load. Please pray that we can find something quickly.
I talked with Breanna's pediatrician today and she echos my concerns about the diminished feeling on the right side of Breanna's face . She was as upset as I was that the doctors at Duke never followed through . She agrees that Breanna needs to see the cranial facial team sooner rather than later and was going to make some calls. It is all just so complicated, I mean this is my child and not an easy case. I have to make sure I find the most qualified doctor before I allow them to operate on my child.
Please pray for me. Pray that I will make the right health decisions regarding both Breanna and Roy, pray that we will find a reliable vehicle quickly, and please pray for my peace of mind.
Such a stressful day.. The insurance adjuster got here at 11 and said that it needed to be towed to their shop so a mechanic could estimate the damage and then we would go from there. The fire and smoke did not do anything to the body, only under the hood. AAA would not tow the car since it was just towed yesterday so we had to pay out of pocket to have it towed, but should get reimbursed for that expense. We waited all day and finally around 6:30 we got our rental car. My head hurts, I am tired, stressed, and anxious about what is going to happen. Thanks for everyone checking in on me, I appreciate it.
So today was not a good day. Roy had a pretty big seizure this morning, Breanna is still having diminished sensation on left side of her face, and well the icing on the cake was when my vehicle caught fire in Kohls parking lot. We were leaving Kohls going to Breanna occupational therapy appointment when I started my car, heard a pop, and then black smoke started billowing out from under the hood. Roy opened it and saw small flames and lots and lots of black smoke. 911 was called, a policeman was nearby and the firemen were just down the road. When the policeman got there it was still smoking black smoke but when the fire department arrived it had settled down to more of a grayish. They checked it out, unhooked some stuff and made it safe to tow. AAA towed it back to my house and now we are just waiting on insurance adjuster.
I try and be positive but it is getting incredibly hard. Cheyenne was very upset when we got home and she is usually my spiritually full daughter. She asked why bad things keep happening to us. I could see the hurt and questions in her eyes.
This is our only vehicle because there was never any need for another one since Roy can not drive. Luckily we do have car rental on our policy, but that is only a temporary fix. I just wish we could get a break for once.
Breanna and Cheyenne both have appointments coming up at Duke next week
On a positive note Friday is mine and Roy's 16th wedding anniversary and the 28th is Breanna's 15th birthday.
We saw Roy's doctors today. I swear sometimes I leave the doctor office more confused than when I entered. I guess there is nothing simple about the brain. His MRI results showed no change, which is depending on how you look at it kinda of a glass half empty/half full thing. I am looking at is a good thing because that means his tumor is not growing. His doctors are taking him of chemotherapy after this month which finishes his one year cycle. They want to give his body a rest, plus are not seeing a change in his tumor to merit keeping him on any longer. That may very well change in a few months, but for now at least he will get a break. His tumor is an Oliogodendroglioma Grade II, they said that it could start to grow at anytime and if it does they would do another biopsy because just because it is an Olio now it does not mean it will stay and Olio, The structure and cells could change or mutate. For right now they plan on doing MRI's every two months to monitor it, but again that could change. It will all depend on his seizure activity, symptoms, and of course his tumor.
I also asked about the new trials they have going on with polio and stuff and she said more than likely Roy would not be a candidate because of the size and grade of his tumor, seizures, and the swelling around it. She said that these trials increase swelling in the brain and since Roy is already prone to seizures, that it would probably land him in the ICU in a sedated coma.
I guess their hopes for him are to keep his tumor cells "asleep" for as long as possible and try to manage his seizures. She did say that more than likely his tumor will in later years cause more harm to his cognitive and functioning skills, but there are some things that we can work on that may help some.
We never can get a simple answer because Roy's case is not a simple one. His size and location of his tumor is very complex and it makes it difficult to treat.
Please pray for my sweet Breanna. She has lots going on right now. Like most kids her age she is excited about getting learners permit , but in order to obtain it, she has started occupational therapy for vision therapy and physical therapy for strength. The therapist said more than likely she will have to have an attachment for the steering wheel. Now we will have to find a drivers ed class that is willing and trained to teach her with this attachment. She also has been complaining of pain and tingling on her right side of her face along the plexiform nuerofibroma. I emailed her NF doctor and he was very quick to call me back. He said that this was not uncommon in patients with a plexiform as big and intrusive as hers. He is gonna call me back early this week and try and get some appointments set up. He may have to put her on some type of neuropathic pain medication if the pain continues.
Roy has some appointments this coming week. He has a MRI, meets with his oncologist, and blood work and chemotherapy. I think this appointment is where we discuss what the next step is with his treatment plan.
So much going on, please keep us in your prayers.
What a long night Roy had several seizures throughout the night, but seems to be better today. He is resting now, seizures can take a lot out of him. Breanna started complaining yesterday with her right ear hurting and was running a very low fever. I hope that it is not the beginning of an ear infection. She has OT later today and PT tomorrow.
I look at Roy and at times I forget about his tumor, I begin to think we "normal". Then he has nights like last night, where the seizures take over his body. He has days when he can barely walk. I am reminded when I open up the cabinet and I see the pharmacy of pills he has to take daily. Brain tumors suck!!
Had some appointments at Duke today. Today instead of Dr. V (Roy's nuero-oncologist) we saw her assistant, next month we see her and Roy will have is bi-monthly MRI. We went over things that have been on my mind a lot lately. My head is swimming with all the things we have been told over the years. Every doctor has a different answer and our emotions go up and down.
Today I asked this doctor the size of Roy's tumor. It is about 3cm across by 10cm long. Her words were it is about the size of a golf ball wide and about the size of an orange length. She said the size and location makes it a difficult tumor to treat. It is just to risky to try and remove. I also asked her if he will ever be cured.. and the answer was probably not. Chemotherapy is not going to make his tumor go away, it is basically maintenance therapy. It is trying to keep the flood gates closed. More than likely at some point in his life his tumor will change to a Grade III. She said when he finishes this cycle of chemotherapy whether it is a year, 18 months, or 24 months, it won't be his last. The longest he can be on chemo at one time is 24 months. Then he will take a break, not sure how long that will be, then go back on it ro some form of it. I am not sure when or if radiation therapy will ever be used. Its all so heartbreaking. This is our life now. He will never be cured, never go back to the way things were. He will more than likely die from this tumor or complications that arise from it. I know only God know when he will call us home, but I can't imagine how Roy feels with this ticking time bomb in his brain. He had dreams and ambitions and they are put on definite hold. He cant drive now or anytime in the near future. He is not going to be able to teach our children how to drive. I know that is a silly thing to be upset about, but it is just another thing this stupid brain tumor has taken from us. His seizures are unpredictable. Some days they are small and only last a few seconds to minute or two. Then other days they are quite intense.
The doctor basically describe this as a life long chronic problem. He will be dealing with this the rest of his life.
I set up this account to help with some of the financial burden associated with my husband's brain tumor and my daughters medical disorder. Any help would be appreciated. Below is a brief summary of our story.
Our oldest daughter was born with a genetic disorder, Neurofibromatosis. From this disorder she has a plexiform neurofibroma tumor that had grown invasively throughout the right side of her face. This has caused deformity to her face and the loss of her right eye. This disorder has also caused bone problems with her left arm. Between both of these issues she has had dozens of painful surgeries. Her left arm is significantly shorter than her right and she limited use of her hand and wrist. She has been through so much and has many more chanllenges ahead of her.
Unfortunately, our story of challenges and difficulty doesn't end there. In 2010, out of the blue, my husband suffered a grand mal seizure. The next day he underwent emergency brain surgery. The doctors found a very large tumor; because of its location, the surgeons were only able to remove enough for a biopsy. His tumor is known as oligodendroglioma grade 2. He has done many cycles of chemotherapy- 18 months, 6 months, and 12 months. He has daily seizures that no amount of medicine can control.
We have a blur of emotions associated with many trials and overwhelming burdens for the future. As a family, we have been through so much. It seems as if never-ending challenges have come our way. We pass through one trial; another more serious one presents itself, and testing comes once again.
My husband was the breadwinner of our family, but last year he was let go from his job of fourteeen years. As you can imagine with his being out of work, the financial strain has only added to our already heavy emotional burden.