Nine years ago today, I had no idea what I was in for. I was pregnant with my 4th baby, and VERY ready to meet her! My doctors kept refusing to induce..Telling me to let nature take its course.
Two weeks past my due date....Nature was NOT listening!
My next appnt was for the day after Thanksgiving in 2002. I could barely walk. My body was so swollen! I looked like I had just swallowed the entire turkey from the day before.
The drs took one look at me and told me to get to the hospital...I was induced and gave birth that night to a 6 pound 6 ounce baby girl.
When she came out of me...She made no noise. She just laid there, looking back at me as if she was saying..."Why on Earth did you take me out of there?"
From the moment Rachel entered our family, life has been a bit of a roller coaster. She was a fussy baby, who could only be soothed by being held.
Drs told me it was colic, another told me it was my breast milk....It was neither. It was Rachel. A spunky, sensitive, hot tempered little angel. MY Angel.
Years would go by before we would know the full extent of Rachel's issues (Neurofibromatosis, Sensory Integration Disorder, and ADHD) And in spite of all that...she has blessed my life in so many ways, and I am so glad God blessed me with her!
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
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 cancercells.
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!
We got up bright and early today...Got in the car and raced to be first in line. Surprisingly...We found a parking spot, nice and close!
As we walked through the doors, we saw the crowds swarming.
No...We weren't at Target, Wal-Mart, Khols, or Sears....Today was "Chemo Day".
We spent our morning on the 7th floor of the Children's Hospital.
Chemo Days are always a mix of emotions. Bailey says these days are her favorite day of the week. I love my days with Bailey too, but tend to hold my joy, until after we hear what her counts are.
Today they were low. Which explains Bailey's symptoms. (Dizziness, blurry vision, headaches, nausea)
Low Counts, doesn't always mean that we skip chemo...It just means we watch for worsening symptoms. It's a numbers game...A frustrating game of "wait and see".
Bailey just goes with the flow...No complaining, no whining. Always smiling...Always positive. She has a true 'thriving' spirit and knows that sometimes, she has to experience a period of pain, to get to where she needs to be.
How are YOU, when things don't go your way? When you experience a fork in the road? Do you whine, complain and let the world know how unhappy you are? Who are you when no one is watching? Who are you when EVERYONE is watching?
I know for me, when I find myself complaining to the world...Everything I do from that point is negative.
Do yourself and everyone around you a favor....And try smiling when you want to cry. Try saying something nice, when somebody says something mean. I know it isn't easy...Just just for one day, live, breathe, and speak a Thriving Attitude...and see what comes from it.
thank-ful-ness Adj: The consciousness of being grateful for what has been received.
My Thankfulness List
*My Family. I put this first, because without my husband and my children, my life would be meaningless-pointless-and empty. The 7 people who live in my house with me have seen me at my worst....And they still love me. They encourage me,e very single day...Even on the days when life just seems overwhelming and un-winnable. -Specifically, my husband...who for whatever reason, loves me despite all of my "flaws".
*GOD. Normally I would have put Him first...But without my family and the joy they bring to me...I HIGHLY doubt that there would be any sign of God in my life. God has also seen me at my worst. He has seen me doubt Him, question Him, get angry with Him and even at times turn my back on Him...But yet, He is always there, ready for me to come back to Him.
*My Church Family. There are those few that I have connected with on a deeply spiritual level. You know who you are...I appreciate your encouragement more than I could possibly express with words. I LOVE YOU.
*Children's Hospital. We met in July of 2010 and you embraced our family, and ALL of its medical needs without hesitation. Your quick and thorough care of my daughter Bailey has been amazing. You have touched every single member in my family in such a wonderfully positive way.
*Make-a-wish, Starlight Foundation, There with Care, FISH, Once Upon A Child. Your organizations are priceless in the way they have touched my family. You all give in selfless ways and we truly appreciate everything!
*Facebook/Blog. This has been such a wonderful tool, to be able to connect with literally THOUSANDS of families who are dealing with Neurofibromatosis. Three years ago, when I began the whole Thriving thing, I never imagined that it would become what it is today! Thank you all for your wonderful feedback. I hope that I can continue to represent A Thriving Life, and be an example of what it means to Speak and Live a positive attitude.
I wish all of you a wonderful, safe, blessed Thanksgiving.
Thank YOU, for blessing my life with your friendship.
Anybody who has a child going through some kind of long term medical treatment knows, that it doesn't just affect the child going to and from the hospital...It Affects the entire family.
While so much attention is focused on the ill child, healthy siblings can be faced with emotional challenges and need some help in navigating the impacts on their sibling as well as the stress placed on parents.
The Children's Hospital-Center for Cancer and Blood Disorders clinic in Aurora Colorado, has an amazing program for siblings of patients going through chemotherapy and has touched our family, in a big way.
A few months ago, Riley got to spend the entire day at the hospital to talk about how SHE is feeling and make friends who just "get it"...She created a wonderful project that was supposed to represent "her"..and how she feels about her life.
A few weeks ago, Riley attended the "Color Me Mine" event.
Not every hospital has this program, but if you have a child undergoing chemotherapy, it is definitely something you should ask about.
I know...I know. I haven't been great at posting updates on how Bailey is doing. But perhaps that famous saying "No news is good news", rings true.
Bailey has been doing chemotherapy for a tumor on her Corpus Callorum for 8 months now. I was surprised when I scrolled back on my blog posts and realized..."Wow...there is no way it has been 8 months!"
But it has. The crushing news that Bailey needed chemotherapy because a sneaky little tumor decided to creep up, while we were monitoring another tumor on Bailey's acoustic nerve, pushed us into the WE NEED TO DO SOMETHING category in late March of this year.
Bailey decided she wanted to do a video blog today, to let everyone know how she is. I am so proud of her! Her positive attitude has been something that has gotten her through the rough times, of the last 8 months.
I'll still talk about NF, don't worry. I'll still share updates on my family. I'll still rant.
But to truly Thrive with NF, life must be about MORE than NF! It's been too easy for me to keep a very narrow focus these last few years. There's so much to talk about in the world of Neurofibromatosis. But there's also the rest of life.
My daughter playing the violin. How to handle the madness of the holidays. That story of me throwing myself down the stairs I keep meaning to write.
I'll be honest though. I've been a bit fearful. Afraid that you won't really care about my life outside NF. Ridiculous, right?
On my website, there's a video where I and my family repeat the mantra "I have NF, but NF doesn't have me!"
Starting tomorrow, when I might finally write that stairs story (or not), "This blog has NF, but NF doesn't have this blog!" Because my life, and your life, is so much bigger, so much better, than our diagnosis.
It's tough to decide on whether or not to sedate your child during their MRI--Some children do just fine laying still for the procedure, while others may require medication to help them relax (or sleep). So how do you know?
Will my child need to be sedated?
Rachel is 8 and has NF1 and sensory integration disorder, so we thought there would be NO WAY for her to do an un-sedated MRI, but as of this year, (with LOTS of practice and praising) she no longer uses sedation, to get through the 45 minute scan.
Several factors are considered when determining if a child will need sedation, including:
• The age and developmental level of child (You know your child best!) • The length of time it takes to do the procedure (a typical scan runs from 45 minutes to an hour...COULD take longer) • The amount of discomfort expected during the procedure (Injections of contrast may have to be given during the scan)
We tried an un-sedated MRI for our now 14 yr old NF1 son. Braden has ADD, and a pretty significant developmental delay. The Drs. ordered a spinal and brain MRI, in the SAME appointment...BIG MISTAKE.
If you know the scan will be of different body parts, and you are going for un-sedated...Please take my word on this, and schedule the scans on different days! Our poor son was laying in the MRI tube, for almost 4 hours! (this was because Braden became very wiggly and uncomfortable--even with his favorite movie playing inside the tube..and the tech had to repeat many of the scans)
The scheduler will work with you to schedule the scans on different days, and even though doing it this way is very time consuming--trust me, you will be glad you took that extra time!
If you are a first timer...The following are some pros and cons, when it comes to sedation and MRI's.
**Side Note: If you choose sedation and your child has a tendency to wet the bed...It MAY be a good idea, to bring a pull-up, or change of clothes. We learned this the hard way!
PROS for Sedation
*The child will be asleep and positioned by the MRI techs AFTER they are asleep
*The child will not remember the MRI experience or hear the noise
*No need to repeat scans, unless the tech feels something needs to be looked at more closely
*Less traumatizing
CONS for Sedation
*Typically, you cannot be in the same room with your child if they are sedated...Sometimes ONE parent is allowed in the MRI room.
*Longer recovery time...It can take several hours, for the sedation to wear off...My kiddos took the entire day to recover as they were VERY sleepy and groggy afterwards.
*Depending on location and availability--Your child can watch their favorite movie during the scan
*FAST recovery--Just scan and go!
*Since MRI's are a part of life for a person who has NF--the earlier you get them used to it..the better
*You can be in the room -- to comfort your child if needed
CONS for NON-Sedation
*The child could become afraid of the noise or uncomfortable in the closed in space
*Repeat scans are common, due to wiggling
*Longer Scan times
Basically, it's up to you...and how you think your child will handle the procedure...Some kids are just better, if you sedate them...Others, do really well without sedation.
At our home, we make a BIG DEAL out of MRI day. The night before, we practice laying very still for 3 minutes at a time...If you wiggle, you have to start over. If you make it the whole 3 minutes without a wiggle, you get a treat. (M&M, or other small piece of "treat")
We talk about how important it is to stay very still, so the doctors can see their body nice and clear!
I have even taken pictures with my camera....and wiggled it on purpose...to show my kids what it looks like to get a blurry picture. We talk about how the doctors use these pictures to see if everything inside the body is okay...And if it isn't, the doctor will find ways to fix it.
MRI day is also special because the kids know that after they do an awesome job for the MRI tech...They will get some special treat for the ride home....(Yes, I bribe my children. I do what works, and it even sometimes works on my husband!)
The following is some GREAT info, that I found around the web!
How will my child be sedated?
In the majority of cases sedation is administered via an intravenous (IV) tube. Some infants — those under 2 years of age — occasionally can be sedated with oral medications. The sedation physicians will determine the way the child will be sedated on the day of the MRI.
During the MRI
While the child is sedated and the MRI is taking place, he or she will be monitored constantly. Breathing, heart rate, blood-oxygen level and blood pressure will be tracked. In addition, the child will be watched on a camera in the MRI scanner. The nursing staff will report any movement to the doctor, in which case additional sedation may be needed.
An MRI is LOUD! Your child will wear ear plugs and special head phones to protect their hearing. Even with those--the noise isn't pleasant. If the child is watching a movie, the sound will go through the headphones.
The MRI physician and staff will be outside the room behind a large window where the equipment controls are located. They will be able to see the child through the window and a camera, and will constantly monitor the child during the procedure. If the child is not sedated, he or she will be given a device that can be used to let the staff know if he or she needs anything during the procedure.
After the procedure
Once the procedure is finished, the table will slide out of the scanner. If the child did not receive sedation medication, he or she can go home immediately. However, if the child was sedated, he or she will be monitored in the recovery area until the medication wears off and he or she is awake. Parents can remain with the child in the recovery area. If an IV was inserted, it will be taken out after the procedure and when the child is awake.
*Sedation or not...It's always best to talk to your child and prepare them for the experience.
A few weeks ago, when I went to my mail box...I got a surprise letter, that stated that my daughter Bailey, was no longer eligible for medical coverage.
The letter stated that as of March of last year, my daughter did not qualify for coverage...My mind immediately goes to the date we discovered that Bailey had another brain tumor...A tumor that required immediate surgery and chemotherapy.
According to the letter...NONE of Bailey's MRI's, Surgeries, chemotherapy treatments, hospital stays--NOTHING, was covered by her insurance. (Nice of them to let us know, a year after the fact-eh?)
As you might imagine, I kinda freaked out. THIS was the whole reason I applied and was approved for disability for Bailey....To AVOID insurance issues like this one!
I immediately called the phone number on the letter, and left a message.
A day later, I get a call back from the Social Security - Medicaid office...This woman had investigated our case and informed me that a state-wide "glitch" had occurred and thousands had received a similar letter.
The woman on the other end of the phone had no idea of how much stress this had caused me. My mind tried to add up an estimated cost of the 10+ MRI's, Chemo treatments, surgery and hospital stays...When I got to over a MILLION dollars, I stopped trying to add.
I hung up the phone and breathed a sigh of relief. But....What if I hadn't called? Would the issue had just worked itself out? Could I have saved myself the stress and worry, and just ignored the letter?
Yeah...I could have. But "ignoring" has been what I had been doing, for most of my life. Ignoring everything about Neurofibromatosis; it's symptoms, warning signs and most importantly, I ignored a world that needed to open its eyes and be educated about this complicated condition.
Taking ACTION, is part of the E.A.S.Y. way to THRIVE! Explained in my book 'Thriving with Neurofibromatosis'....You cannot THRIVE, without ACTION! When you live A Thriving Life...it means your attitude and actions radiate in everything you do.
