Tuesday, February 9, 2016

Teach your kids!

Yes. My son has an incurable disease. But there is so much worse out there than Neurofibromatosis. I am thankful every single day that Kyle is a healthy happy little boy.  And so far has a healthy, happy mother and sister!  Just recently we read about a family who does not have it so lucky.  When my kids and I read about this family, we knew we had to do something.  See their gofundme page for details and then watch the video that the kids made of us and our little story !




If anyone is interested in donating money and receiving a necklace or bracelet in return, please contact me at Aimeehess@aol.com


Friday, August 8, 2014

It never gets easier.

MRI time. I really can't decide what is worse. Knowing everything that is going to happen, or being oblivious.  I always use to be aggravated that the anesthesiologist never took the time to explain anything, and rushed us in and rushed us out, as he was putting our son to sleep. This time was quite different, as Ken and I listened as the doctor rattled off all the things they would do to prepare Kyle to go out, my anxiety grew.   When I questioned myself if I was getting upset for nothing, I looked at my ex-husband who turned white as a ghost and that's when I knew I wasn't over reacting.  It was time.  We went into the exam room with the MRI machine. I hate this part. First of all, not only is the room intimidating with the high, large, sterile white table to lay on, but the big machine behind it, and all the sounds you hear.  The beeping of the vital machine. The swoosh sounds of the oxygen machine. And about 4 nurses and the doctor all surrounding the bed. This was the only time that my son said he was scared and personally, I do not blame him.  All these ideas went running through my head of how they could and should make this a more comfortable setting for kids. They did let him pick out a scented chap stick which they spread across the mask that they would put over his nose and mouth, so he would smell that instead of the medication that he was inhaling to be put out. I grabbed one hand, Ken grabbed the other and my big strong boy took it like a champ and did everything the doctor told him. Kyle's eyes started to roll back and that's when they usually tell us that it's time to go.  He was out but not out, out.  This time though, the doctor let us stay right up until he was completely out. Seeing a child get put out is awful.  His whole body jerked rapidly toward the end.  And then it finally happens where he just goes completely limp. The nurse told me to give him a kiss, which I did, and I told him I love him and was ushered out the door.  As hard as I try and fight it, the tears come and the anxiety swoops in because all I can think about is that is my little boy in there and I can't be with him for about an hour now.

 Ken and I walked, mentally exhausted at this point, to go get coffee at the cafeteria.  We sat and talked and I was grateful he was there.  We actually laughed and was able to have a good conversation. We distracted each other with stories and updates about the kids. We talked about work and his dog, and other random things. We talked about the past a little bit. And touched on the future. Today with him gave me hope that we could come out of the divorce ok and we could maybe, some day, be friends again. 

 We walked back to the waiting room after 45 minutes and this is when I start looking at the clock.  It seems like they will call every name in the book except for your child's.  When the nurse came and finally called "parent for Kyle" I instantly stood up and Ken let me go first to see him. In the past, Kyle would be real lathargic right after. I was so pleased to see that he was alert and even sitting up! I gave him a hug and kiss and told him how proud I was of him. He drank some apple juice and after the nurse checked him out, we were transferred from the recovery room to a regular room where we would wait for another nurse to check on him before we could go. He was pretty nauseous, dizzy and sleepy but after he was cleared to go, he got right up and got dressed and out the door we went. He did vomit twice on the way home, but now he seems to be doing fine.  

Today is Friday, so I can not call for results until technically Wednesday but I will start leaving messages on Monday or Tuesday.  All I can do is pray to God that it comes out fine with zero concern and have the neurologist tell me that we don't have to go through this for another 6 months, or year, which would be fantastic. I call this disease "the disease of the unknown" because you do not know what could happen or when or if anything even will.  All I can do is pray, hope, and rely on friends and family to get me through.  I could not love this little boy more. We will deal with whatever comes, together.   <3

I’m participating in NF Walk 2014 Rochester, NY and need your support.  Could you please contribute to my fundraising efforts?   http://bit.ly/1u9P2bJ

Tuesday, April 1, 2014

MRI time. The only time I really think about NF.

So it was time for Kyle's MRI.  It's hard to believe that it has been two years since his last one. It's always the same feelings I get though.

  Right before, I get worried about how I am going to let him know that he is having one. And then when we finally approach it, I worry how he will be during the course of a very long day at the hospital.  Then, there is the anxiety of standing next to him while he is being sedated and trying to be strong and not break down when I see him go out. And finally, I worry about the results.   But all my worries were diminished because this little boy handled everything like a champ.  

Before the MRI, he didn't say much about it. Just said "ok mom" when I told him we needed to go get pictures of his brain again.  Then,the morning of the MRI, he said he was scared. I have to give Women and Children's hospital a lot of credit here.  They have this amazing woman named Tara, whose title is a "child life counselor" and she walks around the waiting room and talks to the kids if they look scared. She sat with Kyle for a long time, explaining to him what the radiologist was going to do and showed him everything that they would use. He was able to pick out a special scent (Chapstick) and put it on the mask so it wouldn't smell bad. This helped ALOT.  I thank God for this woman. He seemed fine after that.  We got him on the table and Ken and I held his hand and we watched him go to sleep.   

That was Thursday.  The nurse at the hospital said to call the office on Friday and see if the results were available. So I did.  I already knew I would have a problem.  First of all, when you call the neurologist office, you rarely get a human to speak with.  I left a message on the voicemail requesting a call back. That was at 9am.   By 2pm, I still had not heard back.  I called again, and finally got the nurse. I explained that I was waiting for my sons MRI results and that I was very nervous about them and if she could please have the doctor call me back.  That's when she told me that the doctor is out of town, and I would have to wait until Tuesday.   I couldn't believe this. Was there not a covering doctor there to read it?  I asked this and she said no.  So more waiting. 

Monday came and I thought I would just double check to see if possibly my pediatrician got a copy of the results and maybe she could give them to me.  She said she would try and get them but a copy was not sent to her yet.  I heard nothing.  Tuesday.  I called the neurologist at 9am and left another message stating that I was extremely nervous and I would like a call back from the doctor ASAP.   It was almost 2pm when I gave up waiting for them and called the pediatrician back, practically begging them to see if they could give me the results.  Kyles ped then called the neurologists office and then called me saying that she left a message telling them to call me back. 

15 minutes later.  Finally the neurologist called me. The spots in Kyle's brain that were already there, have got bigger. And he has a new cluster of spots on one side of his brain. After the doctor told me this, it was like he read my mind and instantly said "it's not tumors but we need to have him get another MRI in a year to watch them". 

So what do I do with this information? Cry. Worry.  Cry some more.  But I can't control what is happening and maybe it will end up to be nothing and maybe it won't.  All I know is that I will do whatever it takes to take care of my child.  My beautiful sunshine.  My 8 year old boy.  My Kyle. <3. 

Hailey and Kyle...  We all deserved icecream today :)

Sunday, December 18, 2011

My son and dealing with knowing he has NF type 1.

  "Mr. and Mrs. Hess, I am Dr. ****** and I am here to tell you that your son has a condition called Neurofibromatosis type 1."  

Have you ever seen a movie where somebody is talking to somebody else and that person is hearing the speaker in a echo.  Kind of like they are not really there but some form of speech coming out of nowhere.  That was me that day when the neurologist at Children's Hospital told me our son's diagnosis.  Except this was not a movie or a bad dream.  It was real and when the tears finally stopped coming down and I was able to ask questions it was too late.  The doctor was a fast talker and did not want to get into detail.  The most he told us that day was that the disease is typically genetic as he stared at my skin and looked at both Ken and I up and down. He said it was incurable and can progress or not progress and sometimes can get worse during puberty.  He said it could cause tumors behind the optic nerve or in the brain and MRI's would need to be done consistently.   He handed me a little booklet that only offered websites to follow and maybe an address or two of NF foundations to donate too.  I was scared, confused and lost.  I felt all kinds of guilt thinking that maybe if I breastfed this would not have happened.  Or maybe it was because I drank pepsi while I was pregnant.  I had a million things running through my head that day and I could not even talk about it because talking about it would make it real and it was still not reality to me yet.  It was just a bad dream.

Picture taken from Web MD .  Cafe au lait spots. 

Of course we asked everyone in the family.  "Have you heard of this?  Do you know anyone that has or had it?"   The only response I got from anyone was "What is it called again?".  "Neurofibro-what?"  "How do you know he has it?"  Finally a good question.  When Ky turned around 8 or 9 months old these "spots" started showing up on his body.  He had around 5 when I first noticed.  Then a month or two later it was 10.  A little while after that I counted around 20, all in various places on his body.  The pediatrician told me they were called cafe au lait spots and they were normal birth marks unless a person had more than 5.  The tests would need to be done.  She set up Kyle for a MRI of the brain and that's how we found out that he also had a spot in his brain that confirmed he had NF.  I remember getting the call like it was yesterday and ended up writing about it in support group forum called inspire.  (www.inspire.com).  Here is a copied version of it.  To date it was one of the worst days of my life.

Well, I finally got a call from Kyle's neurologist letting us know what the MRI results were. No tumors, lesions or masses to be concerned about, however, the MRI did show spots called NF1 spots in his brain. All this means, according to the doctor, is that he most definitely has Neurofibromatosis. He wants to see Ky every 6 months. 

I knew this already right? I should not have been shocked. But I guess I had it in my head that the MRI would be fine and the doctor would tell me that Ky would be fine and we dont have to see him anymore. I guess I was being overly optimistic. If everything happens for a reason, like I say I believe, then why is this happening to my son? Why him? And I know there could be worse things, I do, but why should he have to go through anything at all?

So after hearing this, I went to Borders to see if they have any books on Neuro. The man there was really nice and politely told me no, we dont have anything. Then I went to Barnes & Noble to see if they had any books on it because I am really striking out online. I go up to the counter where a man was standing. He looked 30ish, tall, skinny with glasses. Definetly looked like he belonged there. I asked him to check his computer for any books about NF1. He says to me... "Isnt that like the Elephant Mans disease, ha ha" I just looked at him. I said nothing as he checked his computer, only to tell me that they didnt have anything. He looked up at me and saw my face, which, I know was pure devastation. He walked me over to the kid-parenting section. Handed me a book on Autism. I just looked at him again. Then he says to me, "I can order a book for you, but its like 790 pages and it is meant for doctors." Oh boy...here comes the tears. In the middle of Barnes & Noble, here I am crying to this skinny little punk that I just wanted to punch. I told him..."Maybe I am not ready for this yet, thank you." As I turned around to leave I hear him behind me telling another co-worker that he thinks he just made a customer cry, bragging, I should say, since there was not even a hint of sympathy in his voice. 

So my story continues along still confused and hoping to get more information from anyone or anywhere.  I googled NF online which was a huge mistake for me at the time, reading how NF patients can end up deformed and in wheel chairs.  I would read and cry and read and cry asking myself, Ken and God, why?  Why my son?  In my internet search I found a children s book called NF Buddies.  I highly recommend this book for anyone trying to explain to their child what NF is and why they are seeing so many doctors and going to the hospital from time to time.


Now we fast forward a bit to last summer.  I am at Zebbs with the kids eating lunch and my phone rings.  Its the neurologist.   Looking back, I should not have taken that phone call at that moment.  I should have finished lunch with my children, taken them home and then called the doctor back.  But because I was anxious to hear the MRI results I took the phone call.

"Mrs. Hess I am calling to tell you that the MRI showed some spots in Kyle's brain that we did not like so we would like to have him do another MRI a little earlier than usual."   All I could focus on in that moment were the words "spots we do not like".  The tears started flowing and my anxiety level went sky high.  I wanted to ask a zillion questions but with my son being right there I did not want to scare him.  So I managed to get out the words "ok"  and "yes, I will call and schedule the MRI".    Later that day while we were at a friends house for a play date I got a call from Kyle's pediatrician who also read the MRI results.  I was able to ask some questions and she answered them the best that she could and was much more supportive saying that the spots were typical in NF patients and to try not to worry to much until after his next MRI.   

How has NF affected Kyle so far?  Looking at him you would never know he has anything wrong.  He is a sweet, sensitive, caring, beautiful little boy that everyone adores.  If you look at his skin he does have many cafe au laits.  That was my first clue.  Then when Ky was 2 years old and still not talking much, that was my second clue.  NF causes many delays.  Kyle has had struggles in school but we are lucky enough to have full support from the school system and he has received many services that have helped him get this far.   He even went through a special program called Tomatis which I believed helped him immensely.  I am proud to say that this is the first year he will be working without a special education teacher by his side assisting him and he is in a regular first grade classroom.  He is still pulled out for speech therapy, occupational therapy and physical therapy.   He does have muscle weakness but my husband signed him up for Tae Kwan Do this year and we believe that is helping a lot.  My husband and I are very proud of Kyle.  He is working so hard and wants to succeed!  

His next MRI is January 31, 2012.  I am dreading it.  They have to put him under anesthesia because he is unable to remain still for the 45 minutes that it takes to get images of his brain.   He is scared and so am I but I try to be strong for him until he can not see me anymore and that is when I usually breakdown to my husband.  Then we wait for the results.  I pray everyday that he will only carry a minor form of the NF and the MRI will come back as normal as possible.

Why did I write this?   Besides being a minor venting session for me, I hope it brings on awareness and support to others.  Here is a link that I found the most helpful (and less scary)     http://www.nfcalifornia.org/index.aspx

Basically, all I can do is hope for the best and try not think about it everyday. I have to keep positive and be strong for Kyle and make sure we are keeping up with all of his MRI's and doctors appointments and helping him with his delays and being supportive and proactive.  As long as I am doing that I feel like I am doing everything I can do to help him.  We love him more than life itself.

I am asking all my family and friends to read this and please know that I am not looking for your sympathy but only your SUPPORT as we go through this journey with Kyle.  I will keep everyone updated as much as possible.  We love you all <3

 Any money that is earned from this blog using AdSense will be donated to this important cause.  Thank you for reading.