Fall seems to have arrived and we are loving it. Love the fresh air and cool breeze that flows in the windows.
We are are still waiting to hear back from the surgical scheduler for Breanna's arm surgery. Today she was complaining about pain again. I hate seeing her like that. She has had so many obstacles to overcome and sadly will have many more in her life.
Its hard for people to understand chronic diseases, I myself don't understand them, but that is what we are dealing with between both Roy and Breanna.
This is something my beautiful headstrong spirit filled daughter will have to deal with the rest of her life. She will have to be followed by MRI's. orthopedics, and ophthalmologist. Artificial eyes will have to be made periodically throughout her life. The finical burden she is looking at terrifies me.
Roy is doing about the same, but I know he carries the weight of the world on his shoulders. He essentially has a ticking time bomb in his head just waiting to go off. No one knows when or if it will grow all they can do is monitor it and hope for the best. He will have to deal with seizures the rest of his life, more than likely with have to go back on chemotherapy, and there is a very good possibility that they will recommend radiation therapy at some point. I just thank God for the good days.
I also want express my gratitude for all the donations. They help in so many ways. We use them for co-pays for Roy's medicine, help pay for parking at the hospitals, for household bills, and food on the table.
So we saw Breanna's arm doctor last week and it looks like she will need surgery. She is still having pain in her arm and wrist despite the splint. What they want to do is go in and remove the hardware that was put in when she had the free-fibula transplant when she was seven. It helps hold the bones together. After many years, her bones have finally healed, but her bones have been dependent on this hardware for years and taking it out can leave them vulnerable. As you may be aware, her bones are not "normal" and a simple break is not a simple break in her case and can have devastating results. She will have to wear a splint to protect her arm when she is doing activities that may open her arm to injury. This could be as simple as riding a bike or shopping at the mall ( when she was five she fell while we were looking at carpet samples and this is what started this all)
Hopefully though, after this surgery, she will be pain free. It kills me to see her in pain.
Busy busy!! Last week we had several doctors appointments for both Roy and Breanna and it seems like this week and next is more of the same.
Roy is about the same he still having daily seizures. He saw his neurologist who once again increased one of his medications. It seems that he will never be completely seizure free. The best we can hope for is small less frequent ones.
Today, though, he is having issues with dizziness and double vision, so bad that he can barely stand. I don't know if it is the increase in medication or not. it is just so complicated and frustrating.
Breanna had some issues come up, so her pediatrician is ordering an MRI and is getting her to see an ENT. Prayers please.
We finally heard back from UNC and we see the whole cranial facial team in December. They will at that time discuss their plans and recommendations.
Her pediatrician is still trying to get a hold DC because they have a more comprehensive NF clinic and doctors that are highly specialized in this area. She feels that Breanna needs to be followed by a neurologist (so do I) and DC has one that is head of the NF clinic and comes highly recommended.
Between this week and next Roy and Breanna have several appointments coming up. He has his nuero oncologist and MRI and Breanna sees her eye surgeon and orthopedic surgeon. She is still having pain in her hand and arm.
Breanna is still in occupational therapy once a week and is making remarkable improvements.
I am a worrier, I don't like situations I can't control. I worry about today, tomorrow, the next day, years from now. I worry about Roy, the amount of medication he is own, his tumor, the uncertainty of his future. I worry about Breanna. We have had to make some very important very complex decisions in her life, ones that have impacted her life. At 2 days old we met with surgeons to discuss surgery on her eye, then there she was having her first surgery at 11 days old, unbeknownst to us this would become a trend in her life. Then at 2 years old we had to make the decision to have her first craniotmy and the removal of her right eye. She had that surgery at just three years old, then not even two weeks later she had a raging life threatening infection and once again decisions had to be made concerning her care. At four years old came the decisions on her arm, then again at 5, and finally a bone transplant at 7. In between those surgeries, came more surgery and more decisions.
I often wonder if we made the right ones, if she will regret the decisions we made for her.
Now here we are again, making life altering decisions for her care.
Meeting with these different surgeons, deciding the best course of action. One wrong decision can have dire consequences.
I worry about when Breanna gets older and will have to take over the financial constraints of this horrible genetic disorder.
I worry about her finding a loving husband, if she will be able to bare kids. All this keeps me up at night.
I worry about birthdays and Christmases and if anything will be under the tree.
What comes in for Roy's disability goes out for household bills and day to day living expenses and not much is left over.
I am trying to do better, in January, hopefully I will be returning to school to make a better life for my family.
I know all thru the bible over and over it says to trust God, lay all your burdens on him, but it's hard, especially for someone who likes to be in control of the situation.
Today in Cheyenne bible study there it was
That is why I tell you not to worry about everyday life- whether you have enough food and drink, or enough clothes to wear. Isn't life more than clothing? Look at the birds. They don't plant or harvest or store food in barns, for your heavenly father feeds them. And aren't you far more valuable to him than they are? Can all your worries add a single moment to your life?
Frustrating!!! Yesterday we met with the cranial facial doctor to talk about Breanna and their plans. We have been talking about this pending surgery for many years, but now their tone has changed. They keep coming up with many different excuses. Their tones is just different than what it was a few years ago.
I had a phone conversation with her pediatrician last night and she was less than happy. She even echoed some of the concerns that Roy and I had that maybe this surgery is beyond these doctors expertise and instead of telling me that, they just keep pushing it off.
She is going to call around and talk to a few other faculties, she even mentioned going back to Washington DC, but dealing with insurance is going to be a battle.
Breanna's case is tricky because of all the past surgeries and complications that has arose from those surgeries she has had over the years. In addition to that, the plexiform fibroma is wrapped around some of her facial nerves and has done damage to her bones and structure to her face.
We started this plan of action but seem to be in a definite holding pattern. Her orthodontist cant continue with her treatment plan until the surgery is done. She is even frustrated dealing with these doctors. We started with this two years ago and now its all falling through the cracks.
The NF clinic is a joke. Nobody communicates with one another, some of them don't even know who the other doctors are.
This is a big problem because kids with severe cases like Breanna need to be followed more closely than others. Her pediatrician said she has never saw such a disorganized clinic for such a big hospital and specialized specialty.
Now onto Roy. He is still having daily seizures but not as many as before since they increased one of his medications but now he is battling insomnia. He talked to his neurologist and this is a side effect of the medication so he wants him to decrease the medicine which means the seizures could increase in quantity again. We see him later this month and hope to come up with a new solution.
In October he has an MRI and we see his neuro-oncologist. This will be three months since they decided to take him of chemo. Depending on his scan and symptoms they will discuss further treatment options.
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.
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.