Update on Bailey

This is how we do Chemo.  From DAY 1, Bailey has gone into her infusions, with a smile on her face.  I am so proud of her!  Not ONCE did she whine or cry about having to be stuck with needles!

Below, are the many faces of our chemo appointments---Enjoy!

 (Making Prank Calls @ Chemo)

 (Before Infusion Starts)

 (E-E-E-O-O Being Silly @ Chemo!)

In waiting room, giving a "Thumbs Up!" 

  (Tired of Mom ALWAYS having to take chemo pics)

(A "bad" day.  A visit to Urgent Care, for IV fluids and a emergency MRI) 

 (Goof Ball)

(A Happy Camper)

Bailey once said..."I know that God is with me...I know that sometimes you have to go through the dark, to eventually get to the light....and this is just my dark time."

Such an amazing quote, from an even more amazing girl....I sometimes wish I had Bailey's faith and simple out look on life.  To her, chemo isn't the "end of the world"...It's simply one road, that will get her to the next.

Bailey has lost about 15 pounds, lost a few handfuls of hair, feels tired MOST of the time, and has ingested a couple bottles of Zofran (not all at once of course).  But overall, she has felt pretty "normal". 

We have our "bad days", our "scary days", even our "angry days"....But instead of focusing on those days, we appreciate them, because it helps give us a platform to stand on, to reach for those better days.

Bailey has less than 2 months left of her year long chemo treatments left....And while we are ending chemo, with  tumors still inside my child's brain, we are hopeful for a bright future.  We will continue to practice what we preach and take one day at a time.

Urologist. AGAIN!

This has nothing to do with Neurofibromatosis.  Just a fair warning.  But it DOES have to do with our fight for proper medical care.  Sometimes, I wonder with some of the medical care our family has gotten, if the doctors are just tired of hearing "Hopkins"...That is not to say that we haven't received some great care, but there are times, when I just wish I had gone to college to be a doctor.  I would definitely treat people with more care and respect than I have gotten.

My 11 yr old daughter is being seen at the Children's Hospital Urology clinic....AGAIN.  This poor girl has battled UTI's since she was 4 yrs old.  Quite exhausting.  For HER and for ME.  The specialists can't seem to figure out why the infections keep happening, leaving all of us frustrated.  At one point my daughter begged me...."Isn't there some kind of surgery, to fix me?"

My heart breaks for her.  She knows she is different....She knows the doctors can't figure out why, and she is as desperate as I am, to find a "cure".

Riley has taken countless bottles of antibiotics, and has taken part it NUMEROUS urological tests. None of which have pinpointed the cause of the UTI's.

My daughter is now on "prophylactic antibiotics" and has been for the last few yrs.  But we still have issues.  We seem to have exhausted treatment, leaving the doctors and our family wondering what's next.

We have had to fight for every test, though.  I feel like I have become a professional when it comes to going into the doctors office, and pushing them to give us full care.  I get so sick and tired of hearing the "Oh it's nothing." or "Let's just give this a few months."  I WANT TREATMENT NOW!

I am the one who asks, "What's next?"  While the doctors are ready to put Riley's chart in a box and "let her grow out of it".

It takes effort to get what you want and need...Sometimes, it takes going to a different specialist...One that WILL go the extra mile, to help you figure out the answers.  I've been learning this...And RE-Learning this....I AM THE ONE IN CHARGE---NOT THE DOCTOR!  The doc just gets to be the one who follows through with the proper referrals and/or treatments.

It's definitely been a hard lesson for me.  I am the type of person who HATES confrontation....One who never questions anything!  So, when it comes to standing up to a person who has 15+ yrs of College, and degrees on the wall....WHO AM I?

I am a PERSON!  I MATTER!  MY CHILDREN MATTER!


Thrive On!

I'm in Control-Right?

One of the most powerful things most people want in their lives, is control.  When we don't have the control, I know for me, the tension and anxiety that comes from that is extreme. Just ask Rich - I can be a terrible backseat driver :)

Who controls NF? 

The doctors? The Pharmacists? The Insurance Companies? They all have some control in how we deal with it, but in the end, NF controls itself. The real question is, does NF control YOU? 

I know all too well how devastating living with a progressive, potentially terminal disorder is on a person, and a family. How frustrating it can be to hear that nothing can be done or that I have to simply endure my pain.  There is nothing more frustrating than the feeling of helplessness.

 

Not being able to control how bad my NF will get is something I think about every single day.  I often wonder if the tumors will get so bad, that my husband will fall out of love with me....Will my looks determine who stays and who goes?


Medically, NF has taken over - it's all over my Facebook page and the hundreds of e-mails I receive from people desperate to get back some of the control that they have lost.


It's easy to get lost in NF. To lift our hands off the steering wheel of our lives in despair, and let it drive us wherever IT wants to go. But that moment of 'easy' turns into a lifetime of hard feelings, disappointment and depression. 


Having Neurofibromatosis teaches me almost daily that the only true control I have is how I manage and deal with the things that happen in my life, from tumor pain to taking my daughter to chemo to facing myself in the mirror every mornng. 

 

Keep your hands on the wheel. Hold on tight. The road ahead is full of curves, construction, speedbumps, potholes, falling rocks, animal crossings, and traffic cops. Sounds terrifying, but it's better than letting NF drive you - because it will drive you straight off a cliff.  

Why Neurofibromatosis?

"Why do you have those bumpies on you mama?" My 8 year old daughter wraps her arms around me.  "'Cuz I have Neurofibromatosis, sweetie." I tell her.  "I know you do, but WHY do you got that?"  I snuggle Rachel in close to me and look at her cute little face...Her sweet eyes, look back at me, through bi-focal lenses.

"God sometimes chooses the strongest souls....Ones that HE knows, can handle really difficult things, and He marks them, so that He can tell them apart from everyone else." I explain to her.

"Is that why I got these brown marks all over me?"  She asks me.  "Yes, sweetie.  And God marks everyone in different ways...Some people just have marks that are more noticeable than others."

"When I grow up...I want to be just like you, mama!"   "Why is that honey", I ask Rachel.  "Cuz your God marks are really pretty!"

I can't medically explain Neurofibromatosis to Rachel...Not yet anyways...But I can help her to believe that no matter what, she is wonderfully and beautifully made by God.

Update on Chemotherapy

Bailey is officially back on chemo.

 

Last week, as we were heading to the 7th floor, of The Children's Hospital, Bailey and I prayed that her counts would be high enough to start back up chemo...Bailey stopped the prayer, smiled at me and asked, "Why are we praying for something that makes me feel so bad?  Why don't we just pray for this tumor to go away?"

So we prayed.  

"Dear Jesus--You know exactly what our hearts want.  You know how to dissolve this tumor.  We pray for a complete healing. Amen"

As our elevator rose higher and higher, I began to feel an amazing sense that everything was going to be okay.  The answers will come, as they come.  The treatment, while necessary, is not the thing that will cure my daughter....For I believe in a higher power.

Following Bailey's lead through all of this has been an amazing learning experience.  She has taught me to focus on the good stuff.  She says, "Chemo may make me feel sick...It may make me lose hair, but it CAN'T ever take away what's in my heart!"

Every Wednesday, as we ride the elevator up, to get chemo, we now pray a new prayer.  After all...God tells us to pray bold prayers, right?  Sometimes, it takes following the lead of a child, in order for you to see that some answers, to hard questions, are very very simple.

<A pic taken after 2 doses of chemo.  Bailey has lost a considerable amount of hair>

Bailey is now looking forward to High School!  The other day, we took a tour of the school, and walked through her schedule.  I can't believe my "baby" is heading off to high school...She seems so grown up! 

Bailey never questions Thriving with Neurofibromatosis...She just does it.  Does she have bad days?  Sure she does, but she isn't focused on them. :)

Are YOU Thriving Today?

Facing Mountains

I know how hard it is, to face giants.  To push against something, that is ready to crush you.  To, with all your might, go up against something that, seems, unwinnable. (is that even a word?)

I get questions all the time, asking me HOW, to stand up to doctors, who seem so unwilling to listen.  Doctors, who at times, seem to not understand the pain and frustrations that come with having Neurofibromatosis.

If you have come to this blog and are dealing with Neurofibromatosis, you have found someone who understands.  I am not a doctor, or medical professional...But, I am living with this disorder, and experience many of the same frustrations you do.

I didn't get to "Thriving with Neurofibromatosis" overnight.  In fact, there are days that I don't "THRIVE" at all!  But that bar is set....And it's something I try to reach for everyday.  Every time I face my mountain, THRIVING is my goal.

Every time I face a doctor who tells me that nothing can be done, or that I have to simply endure my pain.  Every time I face doctors who make choices for my children that I don't agree with...Or treatments, that seem to be doing more harm than good....THRIVING is my goal!

So how do I do it?  How do I stand up to the world of doctors who are obviously more educated than me?  Who seem to "know-it-all"...Doctors who wear the respected white coats, and have YEARS of experience.

First, you ARE your own health care professional!  It's important to remember this when facing ANY health care crisis.  YOU know your body and YOU know your children, better than ANY doctor.

It all starts with respect.  If you do not respect your doctor...FIND A NEW ONE!  I can respect someone, and still disagree with how or what they think...And respect goes both ways...If you feel you aren't being heard and treated well by your doctor, it's time to move on.

Another thing...Getting angry gets you nowhere...and can oftentimes leave you more frustrated than when you began.  I've been there and I know that people who don't listen, and who act dismissive of your pain, can leave you feeling very helpless, but anger only escalates this frustration and can increase your symptoms.

Two weeks ago, I faced a mountain.  A very respected Neuro-Oncologist, who was on-call while my 15 year old daughter was facing her own mountain, came into the hospital room with the results from the blood test.  My daughter's blood count had dropped 24 points overnight, and this doctor wanted to write up discharge papers and send us home.

My mountain was right in front of me, and I had no choice, but to start climbing it.  "I don't agree with going home...while her counts are still low." Is all I had to say to him.  I got the "Ya Buts...."  But the choice this doctor had made for us wasn't right.

I knew Bailey was better off staying one more night.  Confidence and respect can go a LONG way, and can help make your mountain climb easier.  It's scary, and intimidating, but if YOU don't make this climb...Who will?

I can't go in with you to the doctors office....But this message can!

Thrive On

Motivational Monday

What Motivates Me?

I've been emailed a few times about my blog, and about the way I have chosen to look at my life with Neurofibromatosis. Most of the comments I receive are very positive and I appreciate that so much. But there are few who question my positive choice. I'm not sure if they don't believe I actually live like this, or if they have so much negativity in their own life, that they just feel the need to spread it around.

I know all about Neurofibromatosis. I know about the brain tumors, loss of vision, loss hearing, chronic pain, scoliosis, body tumors, headaches, dizziness, learning disorders.

Even with all of that....I dream. I care about all the little things in life, that make life worth living. I believe in miracles. I believe in laughing when you are sad, and crying when you are happy.

Everyone has the power of choice, so why not use it for something that will propel you forward? If your life is spent focusing on the negativity, that's exactly what your life will bring you. NF sucks, there is no doubt about it. Give the power of your mind a chance to fight this disorder. Changing your perception of something doesn't change the something, but it does change the events around the something....It can make dealing with NF a little easier--who wouldn't want that?

The challenges we face in this life, build our character. The challenges reveal our strengths....or our weaknesses. Shakespeare wrote, "There is nothing good nor bad but thinking makes it so." Changing the way you choose to focus on your challenges can make the difference in if you are Thriving...or just Surviving.