Who is Listening?

Communication is the key to better understanding, right?  I am typically clear with how I try to get people to understand what it is I am saying.  But there are some, who just choose to not even try to understand.

I was referred to an Endocrinologist to further investigate the NF tumors scattered all over my thyroid gland.  These tumors cause no pain, or obvious symptoms, but they are there.

I met with a doctor who is in his 70's.  I could tell right away this man was going to be the type I would have to stand my ground with.  The first words out of his mouth was something about fibromyalgia...."No, not fibromyalgia...."Neuro-fibroma-ma-tosis", I said nice and clear.

He looked very confused.  "You know there's no cure for that?  What exactly were you looking for me to do?"....Uh...gee Doc...Your job, maybe?

I know there is no cure for Neurofibromatosis.  But there is nothing I hate more, than being dismissed, like I am some leper, who just needs to go back home to hide.

Being robbed of hope, from someone who has known me for 2 minutes?  Not gonna happen!

First of all, if you have read any of my previous posts, you know that this kind of attitude from a doctor, doesn't fly with me.

After the doctor said that he couldn't help me....I got up and walked out the door.  He didn't examine me, didn't take any kind of history, or look at any of the MRI, Ultrasound notes....Just simply put no effort in trying to understand me at all.

Sometimes, it takes standing up, and walking away....to get you on the right path. The path to 'Thriving', takes effort...And I know I am worth the journey.  It's time to clear the path of its road blocks, and press on!

As Always--Thrive On!

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

This Is Where We Are

One week ago today, my daughter Bailey was laying in a hospital bed, with a 104 degree fever and a ANC count of 1.  A "normal" ANC count is above 1600.  Bailey was SICK.  I was confused and scared and didn't know exactly what all these numbers meant.


The new chemotherapy that Bailey was switched to had severe side affects.  Since Bailey's tumor doubled in size with the previous chemotherapy treatment, her doctor decided to use Vinblastine...a "faster and possibly more effective treatment". 


With her blood counts going down, her risk of infection went up....And that's exactly what happened, while she was at camp.


A doctor explained chemotherapy to me in a really good way.  She said that  chemotherapy was a smart bomb: It only targets certain types of cells, particularly those that grow and divide rapidly. That means it targets "tumor cells", but it also means that white blood cells, which are produced in the bone marrow and have a rapid turnover rate, can be damaged as well. 


White blood cell counts, sometimes called leukocyte counts, drop with most chemo drugs. Neutrophils, which are a specific type of white blood cell, are the most potent disease fighters. The doctor  referred Bailey's low white blood cell count as neutropenia. 

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Neutropenia

Bailey was discharged from the hospital with a blood count of 102, which was a BIG improvement from where she started.  While it is still considered low, a rising count is a GOOD thing.

Now I find myself panicking wondering if her low energy is related to a low count again....Does she have a fever?  How can I let her go to CTF camp and be so far away from me?

I am torn between keeping her close to me and basically putting her in a bubble....Or just trusting that she needs this camp...She needs to be a kid...She needs to experience the world, not hooked up to port IV's.

I am having a tough time explaining to people how serious this really is.  Some people think that because Bailey was discharged, that she is "cured"....That God did a healing and she is fine now...And while I do believe that God definitely worked in this situation, Bailey is far from cured.

Since Bailey is having so many bad side affects from this chemo, the drs decided to hold off on chemo, until Bailey returns from camp....Then, they said, we will go "full force" attacking this brain tumor.

FULL FORCE scares me!  Wasn't that what we were doing, when she got so sick?  Isn't FULL FORCE what brought her to 104 degrees and 4 days in the hospital? 

This is why I have no answers when people ask, "what's next?"  

We live in our "today".  We enjoy the days that Bailey feels well enough to swim.  We THRIVE in our "now"....And pray for our tomorrow.

Thrive On!

More Low Blood Counts

I was SURE Bailey's counts would be higher today!

Saturday night, when I got the call from the camp Bailey was at, her blood count was at 1.  She had a 102 fever and was quickly hooked up to antibiotics and IV fluids....But they didn't help.  Sunday morning, I was called to come get Bailey from camp.  A friend from church came and picked up 4 of the kids, to make the drive a little easier.

When Rich and I finally got to the camp and saw Bailey....She didn't look sick to me.  I was shocked when I was told how sick she really was.

We were to go straight to the ER...But needed to drop Rich off with kids, so that I could just stay with Bailey for as long as it took to get her fever down, and her counts back up.

When we got to the ER, Bailey's temperature was 104.2...NOW, she looked sick.  I have NEVER seen any of my children with a fever that high.  Bailey, most certainly has never been THIS sick.

We were admitted Sunday night based on blood counts and fever.

Monday, Bailey was still running a 100-102 fever....but her counts were rising....Still extremely low....but headed in the right direction.

Tuesday she went ALL day, with no fever....She was FINALLY eating....and things were great!  Her counts increase from the previous day, and the Drs were sure that Wednesday, she would be able to go home...As long as counts continued to rise.

Wednesday morning, the doctors came in and told me her counts went way back down.

We have cultured her blood and can find no reasons why this is happening....No reasons for low blood pressure.

So we just stay here....Where Bailey can be monitored until her counts stabilize.

While extremely frustrated...We have faith that God heals!



            When you come to the end of your rope, tie a knot and hang on.  

~Franklin D. Roosevelt

Prayers for Bailey

Bailey continues to run a fever...and counts continue to be low.  Bailey is at the Children's Hospital being monitored and given antibiotics.

Thank You for all of the prayers and thoughts!

We are blessed to have so many wonderful friends!

Roundup River Ranch Camp!

Bailey left for camp this week.  A wonderful camp that is specially designed for kids undergoing chemotherapy or other treatment for life-threatening illnesses.

I was sooo happy to hear that Bailey could go.  She has been going through so much these past few months and this was a nice way to say 'goodbye' to chemo for an entire week!

I miss Bailey.  I wonder is she is feeling good enough to be having fun.  This new chemotherapy seems to be having more severe side affects and all I can hope, is that the distraction of camp is helping her keep her mind off of feeling lousy.

While we were waiting for the buses to arrive, Bailey met up with Phillip who was just finishing up his appointment at the hospital.  Bailey met Phillip at camp last year and they have become really good friends. He took her under his wing, and showed her around camp.

Phillip was the boy who was featured in the Mtv show 'True Life' in 2010.  His story broke my heart, and I felt an immediate connection with him and the struggles he faces.  Meeting him in person was wonderful.  He is a sweet and funny boy, who doesn't seem to mind when people recognize him as the "NF Guy from Mtv".

When Bailey comes back from camp, it's back on the chemotherapy.  I love that she gets a break, and hate that she has to go through this, but I also believe that in every bad situation, carries with it, a seed of good.

We may hate chemotherapy, the side affects, and everything else that Neurofibromatosis carries with it, but if we stop searching for the good seeds....If we focus on all the bad that life is doing to us....Those good seeds, will never have the chance to be planted.

Thrive On!

Just Another Day at Chemo

Today is the 2nd treatment of this new chemotherapy.  So far, I don't like what it does to my daughter.  The side affects with this new stuff are definitely more severe.  Does that mean it's doing its job?

Could  more side affects mean that the Astrocytoma is shrinking?

I worry about Bailey constantly.  Every time she says she has a headache, or skips a meal, or wants to just stay in bed all day.  I worry when she comes to me with another clump of hair, that has fallen out.  My mind is whirling, wondering if I am doing everything I SHOULD be doing.

I can't help feeling incredibly helpless. What more can I do?  I have spent the last few years fighting for MRI's and other treatments....Do I push for something MORE than just chemo?

What if this tumor grows through THIS treatment, like it did the last?

I could spend my whole life worrying and wondering.....OR, I could just focus on today...trusting that we ARE doing everything we need to do.

I'll focus on how Bailey looks forward to our "chemo slushy dates", and how all Bailey really wants to do after chemo, is swim in our pool.

I'll take the smiles as they come, and help her through the times where all she wants to do is lay on the couch.

I will trust that we ARE doing everything we need to be doing....And believe that THIS treatment will work!

THRIVE ON!