Showing posts with label Thriving with Neurofibromatosis. Show all posts
Showing posts with label Thriving with Neurofibromatosis. Show all posts
Friday, April 15, 2016
Why Did God Make Me Ugly?
I was emailed a question a couple weeks ago from a woman suffering an extreme form of Neurofibromatosis. Attached was a photo. In the e-mail she asks the question..."Why did God make me ugly?"
How do you define UGLINESS? For me, when I think of that word, it doesn't have anything to do with appearances. Ugliness is an action. Same goes for the word BEAUTIFUL.
When I looked at this woman's photo, I didn't see ugliness. I saw strength. But I definitely connected with how she feels.
She asked me questions about how I feel about having NF...And if my love life has suffered.
"My husband doesn't love me anymore. And I find myself pushing him into an affair....Maybe then he will be happy."
My heart broke for this woman, and I have been struggling with how to respond to her....which probably also can explain my hiatus from blogging.
I tend to run from things that make me uncomfortable...And NF, despite my show of bravery on-line...Does make me uncomfortable to talk about.
It's mostly because people just don't get it. To them, tumors mean cancer....Cancer means sick...Sick means death....And death means sympathy....Sympathy means pity etc etc etc....
NF is not something that can be talked about casually. It's complicated, and goes beyond, 'bumps on the skin'.
The thing is I find myself asking God 'why' a lot. Why do I have to deal with this? Is this a form of punishment? Why do I have to be strong? Why won't God just wiped this disorder away?
My NF 'isn't THAT bad' right now....But what's going to happen in 5 yrs? 10? 20? Will my "THRIVING" turn into frustration, anger and bitterness? Will I be asking if I am still worthy of love?
Honestly I am scared to death of this happening.
But for now...I am trying to build myself up to be strong. Build up the people who are around me to not judge...But instead LEARN.
I hate that the woman who emailed feels ugly...And feels like her husband doesn't love her. My advice is to sit down and talk about this. People fear what they don't understand....And maybe its just that the husband is scared. So he pushes away.
It's easy to run. It's hard to face reality. It's hard to teach. But in all those things that hard...When we face them....We grow. And we can grow to love ourselves....Once we love ourselves....Others can start to love us.
THRIVE ON-
Saturday, July 19, 2014
LaLaLa....I Can't Hear You!
"Talk Bailey. TALK. That's why we are here...." But she wouldn't. Or couldn't....And no amount of nudging or prompting was going to work.
Hmmph!
Bailey is 18 now....So, technically I didn't even need to be in the room today. But...in almost every way....Bailey is not 18. She still needs me there. Asking questions and advocating for her needs.
I'm not sure if it's a coping mechanism...Or just the way Bailey is wired. She RARELY speaks when we are at the hospital....Even when doctors TRY to engage her, she often just "unplugs" and drifts off to....somewhere. But, get her in the car afterwards....and she's back.
I never shame her for this...Because this is who she is and trying to force or move her into being more "normal" would be a futile effort anyway.
Life with Aspergers is complicated. Life with Neurofibromatosis AND Aspergers, even more so.
Is it the learning disability that is making it so the Aspergers is more noticeable....? Probably so. At least in OUR CASE.
Call it an inability to cope....Lack of understanding....Or a combination....Bailey definitely knows about her medical issues...But as you can see from a very dusty blog of hers (BLOG)....She doesn't like to talk about it....or write.
While it may frustrate me - That my daughter, whose mother could talk all day about the drama of our very busy life...I get it. If I were Bailey....I'd probably want to UNPLUG too. The drama and seriousness takes MY breath away....I can't imagine what it would be like being 18, dealing with all that Bailey has on her plate.
If you ask Bailey if she's HAPPY.....She will smile and tell you "Duh...Of Course!"
So ... I guess THAT'S what matters!
THRIVE ON!
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Tuesday, May 6, 2014
Who's That THRIVING Girl?
My hubby has a blog and it's not a weight loss blog. But he faithfully checks in with his readers about once a week, to keep him accountable for how he is doing on his journey with weight loss. And I will say...He has done AMAZING! Sure - he has more "off days" than I do....But, I am so impressed with his focus and dedication to a healthier him! Check him out HERE
He and I have essentially been on the same "diet" for the last 2 years. We have been low-carbing and working out at Planet Fitness...And I found my sweet spot in doing kickboxing a few times a week....
But today....Was the very first time we actually worked out TOGETHER. Him spotting me....Then me spotting him.
It was amazing! Sure we have been at the same gym....at the same time...and occasionally catch each other's eyes from across the floor....But today was different.
I felt Supported and Encouraged. ( I feel this way a lot...but sometimes a little something EXTRA is needed when it involves weight loss ) :)
An amazing switch, from how I feel when I workout alone.
Without the LOVE and ENCOURAGE from friends, family and people I don't even know, THRIVING would be just a dream....I wanted to THANK ALL OF YOU....The people who leave encouraging comments....The ones who "anonymously" read and walk away feeling better about life, the many who defend me when someone is less-than-nice...and even the ones who are frustrated and angry with life....ALL of you have helped shape me into who I am today.
Feeling a bit MORE THRIVING than usual!
Monday, May 5, 2014
MY Review On A Book Review
Today - I wanted to address a book review that someone left about "Thriving with NF". This review caught me off guard for a few different reasons....First, and most obviously, because it basically trashes me.
I have gotten my share of hate mail, but this went on a personal attack level, that made me feel that either this person is just so angry at life, that anything positive just pisses her off. Or that maybe she just feels the need to personally attack people trying to make a difference.
Secondly, it seems like this person failed to realize that this was just a glance into my life....And how NF affected ME...My book wasn't written for educational purposes at all.
You can read the review directly by clicking HERE
(Quoted from www.goodreads.com)
"As someone with neurofibromatosis I can say with some degree of certainty that this book is pathetic. The author claims to be "thriving" with NF. In my opinion it is a pathetic plea for sympathy. I have the condition too. The author was either too lazy, too selfish or just too pathetically stupid to take the time to research her condition. Even after passing this gene on to her children she took very little time to become informed about the condition. She neglected to learn or mention that the gene for NF is a dominate gene and that she sentenced half of her children to a life of uncertainty. No mention was made of the way it can affect a persons life. No attempt was made to educate the general public on NF.
If you want to actually learn about NF I suggest you go to the website CTF.org. You will actually learn something there.
She seemed to revel in the fact that NF was a condition that qualified her child for a free trip to Disneyland.
The book is only as good as the author. In this case pathetically stupid."
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Let me address the fact that I don't ask for ANY sympathy. I simply told my story, in hopes that it would make people feel less alone in the world of NF. Growing up, for me, NF was a curse word. It was what my brother had...and it was what tore my family apart.
This reader - didn't seem to understand that as I grew up....My symptoms were ignored. I saw MANY doctors throughout my life that NEVER ONCE recognized that I had NF. In fact I gave birth to 5 babies before ANY doctor mentioned NF!
"Lazy, selfish and Stupid"....? Call it what you want.
AFTER MY diagnosis and finding out that 3 of my 6 children had NF.....I TOOK EVERY SINGLE MOMENT I COULD TO BECOME INFORMED ABOUT THE CONDITION!
My book....WAS NOT an education tool about NF....Instead, it was a look into a life where NF snuck its way around....Affecting me in ways that went undetected, until I became an adult.
"No mention was made of the way it can affect a person's life".....? Excuse me? The ENTIRE book was about how if affected someone's life! For MANY....NF isn't diagnosed at birth...or at 2, 3 4 yrs old. This was a BIOGRAPHY!
To the person who left the review,
I am sorry you felt the need to personally slam ME for living a THRIVING life. I am doing everything I can do, to live a positive and fulfilling life....and also give my children the opportunity to do the same.
Yes....I LOVE the fact that our family got to go on a trip to Disney....Not BECAUSE of NF, but because it gave our family the opportunity to make memories together, that didn't include Drs, or MRI's.
I take full responsibility for bringing children into this world that have a medical condition. I am teaching them to be strong- positive people who understand what NF is....Since I was never given that by my own parents.
I agree...If people reading my book want to know more about NF, that they research it through other means. AGAIN-My book was never intended to be an educational tool.
I hope you find a way to be happy in your life...BUT- don't BASH people who are already doing it!
THRIVE ON!
Thursday, January 24, 2013
Bailey Update!
I have the most amazing daughter! She has gone through...and is currently going through so much...But she has never once complained. I am so very proud of the young lady she is becoming!
Now - For an update.
I wish that I had better news...Or even just a hint of good.
Yesterday, we met with the Neuro-Oncology team. (Our BIG appnt is next Friday, but we had some medical concerns that needed to be addressed)
Bailey's symptoms along with the fact that her brain tumors don't seem to be going anywhere, prompted a decision to take Bailey off her chemotherapy.
We had a feeling this was coming. She has been on 4 different types of chemo, over the last 2 yrs...with no break.
The talk on the way to the hospital was how Bailey felt about this possible decision. SHE was all for it. Me on the other hand was scared to death to agree to do this....But would never voice this to my 'little girl'.
I hate the hospital. I especially hate the 7th floor. We've made that elevator ride a thousand times and the feeling never gets better. Sometimes, Bailey and I close our eyes and pretend we are taking a ride on a glass elevator...You know...Like the one on Willy Wonka's Chocolate Factory.... WHERE DO YOU WANT TO GO, BAILEY...?
We checked in and waited for us to be called back to the exam room. I hate waiting rooms too. My eyes scan the seats that line the room....And stop at the few kids that seem WAY more sick than Bailey...And I start to feel a little guilty.
We are on the Cancer/Blood Disorders floor and as far as OUR "sickness" goes, we are pretty lucky. I realize that we aren't dealing with the "C" word...But we belong on this floor just as much as the sweet little kids that are running around sporting bald heads....And this often scares me, more than I can say.
We finally make our way back to our room, after getting the routine weight, height and blood pressure check...And again wait.
Bailey and I laugh when we talk about the memories these exam room hold for us. The last 2 yrs have been CRAZY.! We have experienced being...SAD...HAPPY...DISAPPOINTED...ANGRY --If these walls could talk, I am sure they would have the most amazingly emotional stories.
Our small talk was interrupted when the doctors come in. We haven't seen them in almost 3 months. It feels like an eternity has passed.
We weren't due to see these Drs, for another week...but this issue that Bailey has been experiencing needed to be addressed. We talked about how Bailey has been feeling and what the new symptoms were...And the doctor told us that we needed to stop treatment.
STOP. My heart sinks.
I knew this was coming...But it was like I wasn't ready to hear it. It's different when it's ME talking about this possibility...But hearing Bailey's Drs say it, made me feel sick.
The "WHAT IFS" begin rolling around in my head. "WHAT IF IT GROWS?" "WHAT IF....."
What if....
I tried to hard to push these thoughts out my my mind....But I can't help it.
I hold Bailey's hand ... And we leap...Together.
"Thriving in Action"....I told Bailey.
Life holds endless "What ifs..." And there comes a time, when you just have to do it anyway...Because- you never know, if YOUR "what if" will turn out to be something amazing!
THRIVE ON.
Tuesday, December 18, 2012
Thriving with NF goes Mobile!
Today was AWESOME! Why? I got to spend the morning with my oldest daughter. She and I were invited to speak to 2 classes about Neurofibromatosis. These classes are learning about genetics and chromosomes...So the teacher(s) thought it would be perfect for Bailey and I to talk about our experiences living with NF.
Bailey made a short video about NF and showed it during our talk.
I was so proud of my young THRIVING GIRL. She hasn't let NF or the bad news we got about the complications she is experiencing get in her way...She is the true definition of what it means to THRIVE!
Thrive On!
Monday, December 17, 2012
Thrive Thrive Thrive

Thrive Thrive Thrive
As I write this, Bailey is laying in the other room undergoing yet another MRI - this time focused on her back.
A few months ago, we discovered that Bailey has Degenerative Disk Disease. "The back of a 70 yr old" our doctor told us, half joking.
After months of failed attempts of physical therapy, it is clear that something MORE needs to be done. But what? We have been told there is no surgical "cure" for DDD. Therapy has seemed fairly useless, and medications consist of narcotics, which I really don't want my 16 yr old to rely on.
Several Xrays later...We have learned that Bailey has several stress fractures, a few rotated disks and possibly the beginnings of Osteoporosis. This...To go along with 2 inoperable brain tumors...And possibly a failing liver.
Me? I am sitting here thinking of ways to stay positive. To focus on all the good that surrounds us. There is SO much good. I see the smile that seems permanently cemented on Bailey's face...No matter how much she is facing.
Finding the good is not easy to do in light of the news of Sandy Hook Elementary. I've spent the weekend crying over the many lives that have been forever changed by that senseless act.
Sometimes I let myself get a little too wrapped up in events like this- I allow tragic events like the one on Friday....Or the trial for Casey Anthony affect me in really negative ways. I wish I could rescue every little child in the world. But then I hear the buzz/kachunk of the MRI, and wish I could just save my own.
"Thrive, Thrive, Thrive."
I admit, it sounds silly. Pollyanna, perhaps. But when I close my eyes and silently chant this simple word over and over. I feel better. This word...Has become very important to me and my family....Especially when things aren't going the way we would like them to - which seems to be nearly every day lately.
People have told me "Sure, it's "easy" to THRIVE when things are okay with you and your family - you should try living MY life." And yes, when the MRI reports are "stable", and the side affects of chemo are at a minimum, it IS easier.
We haven't seen those days in months.
Today I feel like I'm stuck in the middle of the ocean - trying to swim for shore, but with each stroke towards home, I'm slammed backwards by one wave after another - constantly pulling me back into the ocean.
I'm Exhausted.
Thriving doesn't always mean spending life with a smile on my face. That doesn't equal Thriving. Often it equals lying. Thriving isn't even knowing you'll make it to the shore. Thriving is CHOOSING to keep swimming, to stay above water anyway you can. It can mean resting and floating for awhile. It means never choosing to just sink and drown yourself in sorrows, pain and fear.
I work to be a lighthouse in the world for NF, and a life preserver, or at least a piece of driftwood, for my family to hold onto as we go through this current pain. Perhaps, if enough of us band together, we can build a boat - and even if we never hit shore, we can party together through life.
Just keep Thriving.

Tuesday, October 16, 2012
It Starts....Physical Therapy
We went into Bailey's physical therapy appointment excited. Hopeful even. But as Bailey's history unrolled itself in the chart....Those good feelings quickly deflated.
Do you know what's worse than a doctor telling you that
"there's nothing that can be done to help your child?"
NOTHING.
Nothing is worse than hearing that.
Bailey has Neurofibromatosis. 2 inoperable brain tumors.
A year and a half on chemo...AND Degenerative Disk Disease.
While SOME people with DDD benefit....even IMPROVE with intensive physical therapy, this is not the case for our 16 yr old daughter. It seems Bailey has a more complicated case of DDD, than first thought....And our therapist tells us that no amount of PT will help Bailey.
But...There ARE some good things that came out of yesterdays appointment. Bailey has a couple rotated disks, that CAN be improved with PT...And the therapist offered "as much PT as Bailey can handle" to help increase core strength-Which MAY help with the pain Bailey experiences.
So...while it sucks that nothing (right now) can be done for the DDD...We ARE hopeful for the potential answers that may come in the next few months. We don't give up, and we continue to THRIVE.
Even when things don't go entirely our way.
Tuesday, October 9, 2012
Update on Chemotherapy
For those that have been asking....An UPDATE on Bailey:
In March 2011, we discovered Bailey had (still has) a very dangerous brain tumor. She began receiving chemotherapy immediately after this discovery and were confident that the carbo/vincristine combo would halt this tumor's growth....Unfortunately that did not happen.
The tumor went from a regular M&M size, to a peanut M&M size.....After 3 months of treatment.
We then switched to slightly more aggressive chemo (Vinblastine) And Bailey stayed on that for the next 9 months. We had to play with the dose a little bit, because Bailey showed signs of extreme sensitivity. (I was told by our Neuro/Oncologist that Chemo sensitivity for kids with NF is VERY common)
This tumor has stayed relatively stable during that 9 months, only changing very slightly--
Our 52 week treatment plan was over....But we still had a brain tumor, that was very much a part of Bailey's life...and it didn't seem to be going away....So we decided to continue on with a newer chemo that Bailey would take orally on a daily basis.
March 2012 we began Everlimus (Afinitor) 5mg.
Bailey's port was surgically removed and we were excited to be a part of a select group that was taking this "new" chemotherapy, and hopeful, because its reputation had been really good in treating NF related tumors.
Our "every 3 month MRI" in May showed 'no change' in the size of this tumor.
In August this tumor took a turn. While still measuring the "same"...the tumor has changed shape. No one can really tell me what this means exactly...Although I was told that it either means it is getting ready to shrink, or grow.
During the time on Everlimus, Bailey's cholesterol levels have sky-rocketed. The Drs are keeping a close eye on this, as am I- at home, with diet and exercise-
We get Bailey's blood levels checked once a month and in September the levels indicated the chemo levels were 'too high'......In October, they were 'too low'.
The Drs. decided to increase the dose from 5mg, to 7.5mg and that's when a whole new set of symptoms began.
*Mouth sores
*Leg sores
*Extreme body aches
*Exhaustion
*Mood changes
*Stomach aches
Our next MRI is in November....Those results will determine what we do next.
We live our lives 'in the moment'...We have no choice--
And when happiness comes---we rejoice!
When hard times hit-as we know they will--
We look to our Father--and stay calm and still. *Kristi Hopkins
THRIVE ON!
Monday, March 19, 2012
Third Times a Charm?
The UPS guy came today. He left a package on our door that had a big RED stamp across it that read URGENT! I knew what it was...We have been expecting this delivery for over a week. Generally, I am excited when we get a package from UPS...But THIS was Bailey new chemotherapy. Excitement, simply wasn't there.
This is our 3rd (and hopefully final) chemo...
The first chemo (Carboplatin) did nothing...Bailey's brain tumor grew through treatment...The second (Vinblastine) has kept the tumor stable...But put Bailey's body through WAY too much...so NOW we are ready for the KNOCK OUT PUNCH!
But I feel different about this chemo....When you are in the hospital--getting blood draws every week....Everything so sterile and precise....It leaves me extremely weary, of having Bailey swallow this pill every night, with no one monitoring anything (except the once a month visits for a CBC)
I can't help but wonder if THIS chemo will be it. Will my 16 yr old battle this forever? I know Neurofibromatosis is a LIFE LONG battle...But Bailey has been in a fight, that goes beyond what MOST people with NF have to deal with.
At 16 yrs old, she has had more MRI's, needles, surgeries, fevers, hair loss, hearing loss, days lost from school, nausea, dizziness (the list goes on) than ANY teenager should have to face. At 16 yrs old, she has had to face the monster of uncertainty....
I should be able to provide a comfort-zone for my child...But it's honestly something I can't offer Bailey...and she knows it. I can tell her everyday, that "Everything is going to be okay"....(And it very well may be okay in the end) But I can't promise her...And that hurts me so much.
My job, is to teach Bailey to put all of her fears and uncertainty into God's hands. Doing this has brought with it, its own comfort. We know as a family, that we are too small to handle any of this...and ONLY GOD has the control.
A 'THRIVING LIFE' means to let go of all the things we have no control over...and to rein in and focus on the light, that letting go brings in.
I am a work in progress. I want to "fix" Bailey. But what I have realized over the past year -- is that sometimes it's the most "broken" people, who are the most positive, God-loving people you will ever meet.
I am broken. And I am trusting God....and letting go.
Thrive On!
Wednesday, February 29, 2012
Rare Disease day
Today is Rare Disease Day!
My goal is to continue to make more videos about what it's like living with Neurofibromatosis.
Why not challenge yourself today...Post a video, blog post or simply talk to someone about what it's like for you, living with a RARE Disorder!
It's "E.A.S.Y." to THRIVE
EDUCATE
Watch your ATTITUDE..Take ACTION
SHARE with others
YIELD to the possibility that you can be whoever you CHOOSE to be!
THRIVE ON!
Sunday, February 26, 2012
Neurofibromatosis in the News!
Broomfield mom-daughter duo a model of positivity
They hope their way of dealing with incurable condition will help others cope
Posted: 02/26/2012 12:00:00 AM MST
FOLLOW THEM
To follow Kristi and Bailey Hopkins and their mission of thriving with Neurofibromatosis visit their blogs:
Neurofibromatosis is a hard word to say, and for medical professionals just as hard to understand. The as-of-yet incurable condition, passed along genetically, causes tumors to grow on nerve tissue throughout the body, primarily producing skin and bone abnormalities. While some people with the condition can live almost unaffected, depending on the size and location of the tumors, others can experience all kinds of complications, including hearing loss and learning disabilities.To follow Kristi and Bailey Hopkins and their mission of thriving with Neurofibromatosis visit their blogs:
Kristi's blog --http://thrivingwithneurofibromatosis.blogspot.com
Bailey's blog --http://achildsviewintonf.blogspot.com
To learn more about neurofibromatosis and how it is being researched and treated, visit http://ctf.org.
Broomfield resident Kristi Hopkins and her daughter, Bailey, know all about neurofibromatosis, or NF. The duo have been living with the condition their whole lives -- though they were just diagnosed in the past four years -- and have been confronting it head on for the past two years. In their view, a view all eight members of the Hopkins family embrace, the best medicine for the condition is lots and lots of positivity.
Kristi Hopkins first came in contact with NF about 35 years ago, when her brother, Mike, was diagnosed. Her mother carried the condition, which occurs in about one in every 3,000 births, and passed it along to Mike and -- though she wasn't diagnosed until 2007 -- Kristi.
Kristi Hopkins said the guilt of passing the condition on to her kids caused her mother to become depressed and hide from it.
"My mom ignored it and avoided it," Kristi Hopkins said. "When (I was diagnosed), of course, I wanted to deny it. I chose to at first be angry and afraid, but after (my youngest daughter) Brooklyn was born (three years ago), I realized my anger was getting me nowhere."
The Hopkins family knows a thing or two about the power of positive thinking. Dad Rich Hopkins is professional speaker and speech coach, who competed in last year's World Championships of Public Speaking. Rich Hopkins, who had his left foot amputated in 2006 because of complications from a birth defect, delivered a speech about living a positive life by living in your most positive moments and rejecting the negative moments, a lesson he passed along to his wife and daughter.
Three years ago, Kristi Hopkins was writing her feelings about her condition in an admittedly negative online journal when her husband suggested something that changed her life.
"He said, 'What if you did something positive for people that inspired them?'" Kristi Hopkins recalled. "That day I started 'Thriving With NF.'"
"Thriving with Neurofibromatosis," Kristi's blog, has been going strong for almost three years, she said, and is followed by more than 200 people. The blog, and self-published book by the same name, are dedicated to confronting NF and facing the challenges it presents head-on.
"I feel like if someone is recently diagnosed with NF and they Google it and somehow they find me, (my blog) can give them hope," Kristi Hopkins said. "Because I've gone on and gotten married and have a family, and a lot of times people who are recently diagnosed lose hope."
Mom shares her desire to help the NF community with daughter, Bailey, who was diagnosed at age 14. Bailey's condition has caused several tumors to appear in her head. One tumor puts pressure on her right ear and makes it hard for her to hear. Another tumor is near the center of her brain. While it is non-cancerous like a vast majority of NF tumors, it has been growing. Its growth lead doctors at Denver's Children's Hospital two years ago to recommend chemotherapy to prevent serious complications, and Bailey has been reporting for weekly treatments four out of every six weeks since.
. "I'm always nervous before receiving chemotherapy and relived after," the Standley Lake High School freshman said this week. "It's like, 'Alright, I can go home and play video games.'"
Despite a natural fearful initial reaction, Kristi Hopkins said her daughter has been a trooper, taking her treatment in stride and being strong for her family.
"She's so inspirational," Kristi Hopkins said. "She put her hand on my shoulder and said, 'Mom its going to be OK,' and she's had that attitude the entire time."
It was when she began receiving chemotherapy that Bailey Hopkins started her blog, "A Child's View into NF," which she has been updating for 1 ½ years. The blog, like her mother's, is anything but negative. It shows pictures of Bailey making prank phone calls while waiting to receive chemotherapy and posts discuss the 16-year-old's interests and hobbies -- including playing video games and drawing -- as well as how she deals with NF.
"I hope what comes from my blog is that I can help others and help them get through things with NF and help them find new hope," Bailey said. "I guess it also helps me express myself."
Kristi Hopkins said that in spite of her life with NF and its effects on her family, she feels blessed that she has found a way to turn it into something positive for others with the condition. She said she feels like her blog and her daughter's blog provide them with a purpose: Spread postivity.
"It's great medicine, because there is a lot of downside to living with NF," Kristi Hopkins said. "If you act like you feel bad you will feel bad, but if you act like you feel good even if you feel bad, it's going to make all the difference."
Tuesday, February 14, 2012
Who Do YOU Affect?
We are in the middle of a complete case review...This means submitting ALL financial records; bank statements, bills-Anything money related. Short from my blood type, this woman knows me better than anyone! (On second thought, she probably knows my blood type too)
Anyway...She began asking me questions about out financial "status" and how things are going. "Your bank records show me that ..." I cut her off, telling her that our financial life was basically at a stand still...Until we can ensure the life of our daughter.
Silence.
"I don't like what the bank statements say either." I told her. "It's our reality and somehow, God sees us through!" :)
She knows all about Bailey; the tumor, the crazy steps we took to secure medical insurance, the chemo...The ups and downs of this treatment...
I heard sniffling and when she responded I could tell she was crying...
This woman, who deals with hundreds of cases --if not thousands, began asking questions about Bailey. She asked about the tumor--where it is, what kind it is, and what was the prognosis.
I told her that we were one of the "lucky ones".....
"How can you possibly say that", she asked me...
" 'Cuz....Bailey is still here...Still smiling...Still relatively healthy...And THAT'S what I choose to focus on."
She says "God Bless You!" and tells me that my case will be done in a few days...Then wishes me luck for all I am dealing with.
THIS...is just one of the MANY reasons, our family CHOOSES to THRIVE. Because THRIVING doesn't just affect those who choose to do it...It affects EVERYONE you come in contact with!
Who are YOU going to affect today?
THRIVE ON!
Be Still My Heart
So, I used to HATE Valentines Day!
Valentines Day in second grade was something SPECIAL...And I wanted to be sure to give Scott something that he would remember forever!
The night before our school party, I stayed up extra late to make sure that MY Valentine to him would be seen by all! I glued and cut red and pink ribbon to a construction paper heart and wrote with scribbly handwriting: Scott + Kristi!
At the party the next day, I folded up my gift, and placed it inside the bag the hung from his desk...I went to turn and there was Scott smiling at me.
"Uh...Hi there Scott!" I said...With a mouthful of candy hearts.
He just smiled and handed me a folded up piece of paper and walked away.
I looked down at the red paper, that was folded neatly into a square, then looked back at Scott who was looking at me! He just smiled and mouthed the words, "Open it later."
Are you kidding me??? I dashed to my desk, sat in my chair and began unfolding the paper in my lap (so no one would see) I kept glancing up at the kids in the classroom, who were going around the room, comparing and swapping Valentine candy.
My hands were shaking, and my heart was racing...."What would it say? Does he like me too", I wondered.
FINALLY...I got the note open. I smoothed it out on my trembling legs and started to read.
DEAR KRISTI
You are always looking at me and smiling. I don't like you, so STOP IT.
FROM SCOTT
I began hating Valentines Day from that moment on. Until I met my hubby, who LOVES me looking at him and smiling...Or at least he has yet to pass me a note saying otherwise. :)
I hope you all have a wonderful Valentines Day!
Thrive On
Sunday, February 12, 2012
What Low Counts Look Like...
We've been doing chemo for almost a year now and have gotten used to the routine:
Chemo on Fridays
Feel Good Saturday
Feel Like Crap Sunday, Monday, Tuesday, Wednesday
Start Feeling Better on Thursday
Then...
Start it ALL OVER AGAIN....
Low Blood Counts or "Neutropenia" - Means the neurtrophils or white blood cells are abnormally low. Neutrophils are white blood cells produced in the bone marrow and comprise approximately 60% of the blood.
When receiving chemo, these levels are checked constantly.
I can tell when Bailey's counts are getting really low...
And sure enough, the blood test showed this on Friday.
Signs of Low Counts
*Extreme Fatigue
*Weak and Short of Breath
*Dizziness
*Sometimes Fever
*Pale Look to the Face
When Bailey got her blood taken, it was very "runny" and thin...She bled A LOT during accessing...It was then that I knew, even before the results came back, that her counts were going to be low.
But...They weren't low enough to cancel chemo. There is a range the doctors follow and Bailey didn't quite fall below that line. (I almost wish she had...just so she can get a chance to recover from this nasty stuff)
We have another month round of chemo...Then we will stop, and monitor Bailey's tumors every 3 months.
Bailey says she's excited to get her port removed and not have to deal with all these appnts. I have to admit, I'm excited about that part too.
Even When We're Tired....Even When We Don't Feel Well....
THRIVE ON!
Labels:
chemo,
Neurofibromatosis,
NF,
Thriving with Neurofibromatosis
Wednesday, December 14, 2011
Santa Claus!
We got a surprise in the mail today!
Letters from Santa Clause!
A special delivery from the North Pole!
Santa wrote to Rachel to let her know how proud he is of her, that she has been such a good girl! He wrote about how the Disney Princesses were proud of her too...for trying so hard in school!
Santa wrote to Riker to let him know what a great big brother he has been to Brooklyn! He says to be sure he goes to bed early on Christmas Eve so that he can come down the chimney and leave presents!
Santa told Brooklyn that he has been watching her all year long...And was happy that she has been such a good girl! He told her to tell Riker to get to bed early...and to not peek on the presents!
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The kids were so excited to read their personalized letters!! They couldn't believe that Santa took time out of his busy schedule just to write to them!
Thank You 'There with Care' for making this such a special Christmas!
Labels:
Christmas,
kristi hopkins,
Neurofibromatosis,
NF,
there with care,
Thriving with Neurofibromatosis
Monday, November 28, 2011
Is It Cancer? MPNST and Neurofibromatosis
No one wants to hear the word Cancer directed at them, or anyone for that matter. But for those of us with risk factors, we must realize the possibility of it happening.
Neurofibromatosis carries with it a number of issues; neurofibromas, pigment changes in the skin, skeletal anomalies, and learning disabilities.
Although neurofibromas are benign tumors, malignant peripheral nerve sheath tumors (MPNST) sometimes occur. MPNST, in the past also referred to as “malignant schwannoma” or “neurofibromosarcoma,” and can occur in the general population but is one of the hallmark complications of NF1.
MPNST, typically forms from unexpected growth of a preexisting neurofibroma, particularly a plexiform neurofibroma, the first symptom is typically unexplained or sudden pain, in the area in or around existing tumors.
Symptoms may include:
- Swelling in the extremities (arms or legs); the swelling often is painless.
- Difficulty in moving the extremity that has the tumor, including a limp.
- Soreness localized to the area of the tumor or in the extremity.
The thing to remember is that just because you have a higher risk in developing cancer, doesn't mean you will. Being aware of your body and noting to your doctor any changes you notice is key in staying healthy, and catching things early. Be aware of your tumors...how they feel and what they look like.
What is MPNST?
MPNST is also referred to as malignant Schwannoma, neurofibrosarcoma, and malignant neurilemmoma. This type of cancer usually develops in young or middle-aged adults, more often in men than in women. The average age of MPNST patients is between 29 and 36 years. About half of all cases of MPNST develop in people who have Neurofibromatosis.
http://en.wikipedia.org/wiki/Malignant_peripheral_nerve_sheath_tumor
http://en.wikipedia.org/wiki/Malignant_peripheral_nerve_sheath_tumor
Treatment?
To treat these tumors, a patient sees an oncologist and a neurosurgeon. Also, patients can benefit from being treated by medical teams that specialize in soft-tissue sarcoma tumors. Treatment of MPNST often involves several steps, depending on the location of the tumor, type of sarcoma, other patient circumstances and overall health.
Types
- There are three main types of treatment for MPNST. These treatments are surgery, radiation and chemotherapy. Doctors often use all three types in combination to create specific individual treatment plans for a patient.
*Surgical Removal
- The most common treatment for malignant peripheral nerve sheath tumors is surgical resection. Resection of tumors involves the removal of the tumor and surrounding malignant tissue. The doctors analyze the edges of the area removed, and if cancerous cells remain, they remove a little more surrounding tissue. This continues until the tissues the doctors remove are clear of cancer cells.
Radiation Therapy
- Radiation is the use of specifically directed ionized radiation in a medical setting. Radiation is a common treatment for these tumors, and is often very effective at different stages. Preoperatively, radiation can reduce the size of a MPNST, making surgery easier for the doctor and therefore reducing the time spent under anesthesia. Radiation helps doctors achieve clear borders without having to cut out more tissue, which is very important when the tumor is in a peripheral area such as an arm or leg. Clearing the borders without going deeper often saves the patient from an amputation. Radiation can also destroy cancer cells that surgery couldn't remove. (Radiation is sometimes used as a "last resort" with people with NF, because it has been studied that Radiation can make the symptoms of Neurofibromatosis worse. Your doctor will decide what is best for YOU and your situation
Chemotherapy
- While chemotherapy is not particularly effective at treating localized MPNST, doctors often use it to treat cancer that has spread to other areas. Chemotherapy, taken either orally or intravenously, involves taking medication that kills cells.
I didn't want to start the week with a negative post that scares people, but MPNST happens....And the more you know about it, the better chances you will have at catching it sooner.
MPNST is rare...But if you arm yourself with knowledge, IF it does happen to you, your outcome will be much more positive.
Even when it's scary....Even when it's overwhelming...A Positive Attitude is key in fighting ANY battle! Remember, it's E.A.S.Y. to THRIVE; EDUCATE yourself-Watch your ATTITUDE-SHARE your stories-and YIELD to the possibility that anything is possible!
THRIVE ON!
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