I'm angry. I absolutely HATE Neurofibromatosis. Today the only good thing that came our way, was all the love and support we got while we were waiting and after we got the results from today's MRI.
THANK YOU!!
Neurofibromatosis...How DARE YOU! While you have made me stronger...Your constant beatings are exhausting. NF...You are nothing but a thief!
Seeing the doctor every 3 months is weird for us....It sorta makes me feel like we are less of a priority now, but in fact Bailey's tumors are HIGH risk for causing major issues. The fact that she hasn't had any of those major issues, doesn't make me worry any less.
Today was our 'every 3 month' MRI...To check on Bailey's brain tumors. We also had a fasting blood draw, to check on what the new chemo is doing to Bailey's body.
The days that led up to today had my mind whirling. The "what ifs" have driven me (and I'm sure Bailey) crazy...But we tried to stay as positive as we could.....
BELIEVE--TRUST--THRIVE
I was in the waiting room...The possible outcomes of the MRI running through my head. I sent up many MANY prayers, knowing that our family is just plain tired of all this chemo stuff.
"We are so ready for some GOOD news Lord!" was my silent prayer.
But the news wasn't good.
Dr. Rush showed us the MRI scan from December....And compared it to the one from today. The word NO TUMOR patient wants to hear.....GROWTH.
My heart dropped to the floor.
The light in the room flickered...and I had to have Dr. Rush repeat what she just told us.
GROWTH.
UGH
She told us that we would continue with the same course of treatment...But if this tumor shows growth in the next 3 month scan, we will HAVE to take action......Dr. Rush puts her hand on my shoulder and looks me straight in the eye...."We aren't there yet...Ok?"
But this didn't make me feel any better.
I looked over at Bailey, who had her head down and was playing with her ipod....I am SURE she didn't quite understand what was just told to us. The full meaning of today didn't come until we were in the car leaving the hospital.
"My tumor grew?" Bailey asked me.
"Yes, honey." I replied.
"The one that can kill me?" Bailey continued inquiring
"The 'important' one, yes." I told her.
Silence filled the car and was almost deafening.
I throw my hands up. Not in a 'giving up' sense though. I throw my hands up to the Lord. I ask HIM to take this from us and DO something with it. Change it. Make it disappear. Have it help someone else....SOMETHING!
I realize the only control we have in this, is how much FAITH we have...And how we use that FAITH to make a difference.
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.
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!
It's really frustrating talking to people doctors, who do not understand Neurofibromatosis. It's even worse, when the doctor admits, that they know "nothing" about the disorder and couldn't really explain the complicated results from the MRI tech.
Don't bother calling me, just to tell me you are under-educated! Don't bother trying to explain something you don't understand...and please....PLEASE go take a class, or open up a book and learn about this common genetic disorder, that 1 in every 3,000 people live with!
When the phone rings...It's sad, that I automatically assume it's someone calling with bad news. Bill collectors, someone sick at school, or doctors calling with results from a test. When when the caller ID displays "private number", My gut wrenches. I hate hate hate talking to doctors over the phone. Times like this...I wish I had a personal secretary that could take the message.
Bailey's pediatrician is a good doctor. She is thorough and seems to genuinely care about the issues our family is facing....But she does NOT get an 'A' for tact. Blurting out, "the tumor has changed and she has 'something else' going on with the corpus calorpum part of her brain." Unable to explain further, she stumbled through notes left and apologized for not understanding what it meant.
Now I am left waiting for the actual Neuro-Oncology visit a week from now. I googled the information I did get, only to find myself in an overwhelming web of confusion and worry. I know better than this!!!! I just want answers. CLEAR answers. Then I want a course of action. That's not too much to ask, is it?
Unfortunately, for people living with Neurofibromatosis....it IS too much to ask. Far too little is know about NF, much less understood...and the course of action...is often, to "watch and wait." Wait for what? For things to get worse?
So, next week....we will hopefully get a more clearer understanding of the tumor changes and the new findings in Bailey's brain. She will have a hearing test, to confirm the loss of hearing in her right ear, and then we will see what is next.
Chemo? Surgery? We don't know yet. All we can do is to remember that whatever will be, will be...and take comfort in knowing that the Lord is with us every step of the way.
