We Have Neurofibromatosis....

Follow-Up With Neurosurgeon

It's so nice to be able to walk into a doctors office and not have to explain Neurofibromatosis.  The health care we have been getting here in Colorado has been  REALLY good.  

I remember not to long ago, walking into my kids' doctor in a new city in Washington.  The Doctor sat down and I unloaded a list of issues that my family was dealing with.  "We have NEUROFIBROMATOSIS!"  I said expecting him to know what it was I was talking about.

The doctor just stared back at me.  "You mean Fibromylagia?"  he responded.  "No....I mean Neuro-Fibroma-tosis."  I told him.  "Ohhh ok, the Elephant Man Disease, right?"  I was shocked, hurt and unbelievably confused!

We never went back to that doctor.

Yesterday, Braden and I spent half the day talking to NF specialists about the new findings in his latest MRI scans.   Just a year ago, Braden  was "stable" and showed no signs of tumors on his optic nerves.  Now, he is presenting with a pencil eraser sized growth on his left optic nerve.

Plexiform tumors are scattered along his spine, causing balance and bladder issues.  Dr. Handler looked at me and said...."In the 'NF' world...this doesn't look too bad."  The 'NF' world??  I hate the NF world!  But at the same time, I was grateful for the news.

We were sent off to Neuro-Oncology to set an appointment and meet with Dr. Rush, who also sees Bailey, for the tumor on her auditory nerve.  We were told she would review Braden's latest MRI and would need to see him back in a few weeks.

I was feeling overwhelmed until I saw a family holding on tight, to their young son.  His bald cute little head...his bright, wide eyes.....and His hand wrapped up, with an IV tube leading up to a bag of medicine.  Chemo.  

NF causes so many unknowns, I vowed to keep living in the moment.  To make the most out of each and everyday that I have.  This is the only thing I have real control over.

Doctor Knows Best.....

Last week was filled with many doctors appointments for Bailey.... We asked lots of questions and got lots of answers. An NF team came in to examin Bailey and were quite interested in her case.

Bailey has Neurofibromatosis, and a brain tumor that first appeared to be an Acustic Neuroma or Meningioma....but a further look into this, the doctors aren't so sure.

So what is it? No one can be sure, until it is removed....but now the doctors are thinking of NOT doing a surgery. Instead they may watch the tumor for growth. Now I know these guys have YEARS of experience and probably know what they are talking about, but this just doesn't seem right.

The drs in Spokane were all set to do surgery and get the tumor out of there...while the drs here are using the watch and wait approach. Who is right? And how do we know which direction to go?

So, while Bailey is away at camp, the doctors and I are forming a plan. The first thing we need to do is rule in or out Cushing's. This is necessary because if it IS Cushing's, we can find out if THIS will require surgery--possibly coordinate it with the brain tumor surgery.

Bailey will see Endocrinology next week and have some more tests....But for now, she is having a blast at camp. Living in the moment is where we are at right now.

What's Up Wednesday?

It's been a little KRAZY at the Hopkins house lately. The end of the school year is right around the corner...and I have been busy packing for our move to Colorado. You mix in all the medical issues...and Yeah...you get KRAZY!

Bailey's MRI went well. I am always impressed at how calm and relaxed she is. Just a "go with the flow" type of girl. I am very proud of her, and I know, whatever happens, she will get through this just fine.

I was kind of upset, when I got a call from Dr. Giddings nurse. She told me the report of the MRI looked to be showing TWO masses, and that I needed to make sure I make it to the upcoming appnt.

"Okay..." I thought. "Two tumors on each of the hearing nerves. Hmmm sounds an awful lot like NF2." I had been fighting Bailey's doctors on getting a proper diagnoses, because they are sure that even with ONE tumor, she has NF2. I totally disagree.

Hubby surprised me and showed up in Washington....He knew how crazy things have been for me, and wanted to AT LEAST be there for the meeting with the doctors. It was really nice to see him again.

The appnt for Bailey went well....we talked about the surgery (and the fact the DOCTOR on sees one tumor), recovery and what the after affects will bring Bailey. All she could hang onto were the words, "complications could occur, resulting in death."

On the drive back to school, I just kept telling Bailey that THAT won't happen. She is in very good hands and when we get moved, the doctors in Colorado will take GREAT care of her. Bailey got very quiet.....I knew she had these thoughts rolling around in her head.

She's a lot like me. When stressed, I close everyone out. I never had anyone to talk to growing up, so I learned to keep things inside, stressing about everything....Then like a massive volcano erupting, I'd explode in a fit of crazed frustration.

I don't want that for Bailey.....I pulled the car over, and just held her. Told her what an amazing young woman she is. "But Mommy, the tumor isn't bothering me, why do they need to take it out?"

The Acoustic Neuroma or Meningioma that Bailey has, has probably been silently growing inside

Bailey's head for YEARS. I told her that we COULD leave the tumor there, but in 10 or so yrs, it could cause her real problems, so the doctors want to try to stop it from happening.

"I'm scared of dying and not being here anymore." she says to me. I told her that I would be there every second. "Mom, this is going to cost you a lot of money." Boy...oh boy.....my stress about the insurance has sure trickled over.

I didn't mean for that to happen, but kids seem to always find a way, to find out what's going on. The endless phone calls to doctors, and insurance companies...have exhausted me, and now have stressed out my 14 yr old! What is wrong with this picture!?!? :(

Children should ALWAYS ALWAYS have insurance. NO matter what! Parents should not have to lay awake at night, wondering how a surgery will be paid for. I have drove myself crazy with worry about transferring Bailey's case to Colorado.

I looked at Bailey and told her that I was sorry for letting ANY of my stress touch her. That all she needed to do, was to be strong and brave.

We changed the subject to summer camp! Bailey is attending NF camp this year...and I am soo excited for her. She has been talking about is all year, and it is finally getting close.

It's a good thing that surgery will be August...because now she can go to camp and not worry about stitches and recovery.

So as MAY winds down, and the summer months begin...I brace myself. There is never time to rest, or get off my guard. I need to focus straight ahead. Looking bk is okay, because I can see how far I have come....but I will not look back with regret. Look fwd with hope, drive, determination..and most of all A THRIVING ATTITUDE!

The Tangled Web of Living with NF

When I finally lay my head down at night, in complete exhaustion from the day, my mind drifts off in many directions. I often worry about tomorrow, and stress about yesterday.

I couldn't care less about the tumors multiplying on my own body, but the ones attacking my oldest child spin me into a web of guilt and sadness.

My children, all six of them bless my life, and I do not regret choosing to be a mother. What I hate is that Neurofibromatosis has its hand in my life at all....in their lives.

The Dr. is calling the tumors Acoustic Neuromas, or Meningiomas--he's not sure which they are. But they are there. Last month we knew about the one, this week, we learn there is another, slowly growing on the left side.

Bi--lateral tumors? With NF1? This web is pulling me in deeper and deeper. It's true that NO ONE can predict how NF will affect their life, and that Bailey will undoubtedly come through this, just as strong, if not stronger than when she went into it, but I'm scared.

It's easy to wear a 'THRIVING' spirit on your sleeve, but when you dig deep inside a person...That's when you truly see what they are made of. Am I strong enough to not only hold Bailey up while she undergoes major brain surgery, but also hold up myself and the other kids?

Am I just a woman who is full of talk, but very weak on the inside? This "test" is bringing me to the point where I am questioning myself...because all I want to do is break down and cry. Cry for my baby who has to deal with scalpels and saws and long recoveries and permanent hearing loss.

Are there worse things? Sure there are. But all I want to do is pull my little girl in and hide her from the cruelty of NF. But then I would be falling into what my mother did with me....Hiding in her own guilt and anger, caused me to hide from my own issues for 33 yrs.

Memories of my childhood, stop me from repeating the cycle, but I definitely understand why my mother would want to hide from NF. But like ALL trouble that you try to avoid, it will always find a way to your doorstep.

Guess it's time I opened the door and face this head on. (pun intended)