Post-op

Not a huge fan of the "hug machine"

Logan did a great job recovering.  A little sleepy, cranky and sore Day one, but bounced right back to his usual energetic self Day two (Just in time for the return of Parker and visits from family).  Happy to show of his new "bandaids" to everyone. 

"I like my bandaids"

Healing well

Nap#2 of 3 post-op

After spending the last few days with Grandma and Dude, Parker returned home.  He LOVED his time away but who wouldn't with all the fun things he did.  Fishing (Parker caught at least a dozen fish and Dude caught ZERO), watching airplanes, shopping, riding the ferry, playing with animals and the biggest Lego model's he has even seen!

Reunited with big brother just in time for fruit

mmmmm.. Thanks Aunt Bee

Special thanks to my parents and Aunt and Uncle for taking him in for a couple days.  It really was so helpful to have one less kid.  I know if he were around, Logan would not have gotten the rest that he needed.  Logan got the attention he needed and Parker got some much needed attention as well.  He is ready to go back and do it again!!

"cubby" time with Dude

...and grandma

The good news is, Logan is begging to go back to the doctor.  Nothing will come between Logan and his love of doctors.  When asked what he remembers about the day at the hospital, Logan responded, "I was laughing and it was funny".  Man I love Happy juice!

Port Day

Big brother excited for his "trip"

With big brother off visiting family, Logan went in for his port surgery today. It was a long and tired morning. We had to leave home at 4:30AM and of course Logan was not allowed any food or water. Yeah sure. Logan is probably one of the hungriest, thirstiest kids you will ever find. I knew this was going to be a challenge. As much as he loves going to doctor, a tired, hungry, thirsty and bored Logan is not ideal. Even with these challenges, Logan did remarkably well. Maintained himself without major crankiness till about 7:00AM (30 minutes left to his scheduled surgery time. )

This is when the nurses step in with the "happy juice". Up until now, I have only heard stories of the "happy juice" as Logan usually does not require any help to be "happy".  We gladly accepted. It couldn't have been more than 60 seconds later, Logan was giggling uncontrollably. It definitely lightened the mood. We could barely get through the rest of the pre-op stuff without everyone laughing. 

 

Once Logan was in surgery, it was about another 1.5 hours until we were back with him. He was already waking up, hoarse from being intubated and cranky as anything. Is it too late for more happy juice? Surgery went well and no problems were indicated. You can read about the procedure here.  Some more meds, a couple of juice boxes and a few post-op instructions later and we were on our way home to rest and recover. 

Recovery will be a couple of days taking it easy with OTC meds for pain. He is already trying to figure out what happened, why he hurts and what is this lump on him. Trying to get him to leave it alone while it heals will certainly be a challenge. I'm hoping a long nap and a good meal will get him one step closer to forgetting the whole ordeal.

A special thanks to everyone for their support and well wishes through this all. Whether is was on this blog, text, facebook or phone calls, I see it all and I wish I could talk to you all personally and tell you how much we appreciate the love.  Your support has been amazing and it truly means a lot to know that everyone cares so much for our son.  It only takes meeting him once to know how special he is (yes, I know, I'm his mother.  I'm supposed to say that!)

 

My fears

Let me start by saying, Logan is going to be fine. His life is not over. The reality is, he is probably just as likely to die in a freak accident as he is from these tumors. I hate even bringing up death, but lets face it, as a parent, I think about it. The good news is, I do not fear him dying.

My fears are different, but certainly no less real. Before we even found out that Logan had NF, my brain was getting the best of me.  I worried that his test results would indicate that he did in fact have NF and I cried. I did not think the worst was going to happen. I did not anticipate tumors and going blind, seizures or strokes. The doctors told us to be careful researching on the internet, because it generally only shows the "worst case scenarios". You search for NF-1 and you get pictures of people with tumors covering their bodies and stories of people whose lives are completely destroyed  because they have NF. This is not reality to everyone with NF. I didn't go to the worst case scenario. I tried to be realistic about it.

If he did in fact have NF, he was probably in for the the standard learning disability, ADHD and some tumors on the skin. I cried. I work with kids that range from the mildest learning disability to the most profound intellectual disability. I know the struggles that they go through to learn and be successful. As a kid, I was classified learning disabled and I struggled. I don't want my son to have these same struggles. I don't want my son to work twice as hard as his classmates to do the same work. I don't want him to cry over his homework because he just doesn't get it and it feels so unfair.

I know it sounds superficial, but I also didn't want my son to look different.  I fear him having tumors all over his body. He already has a few developing "bumps" and I pray that that is the worst of it. Kids are mean.  I fear that he will be picked on and bullied if he has tumors on his face.  I fear the looks he will get and the whispering he will hear when people just don't understand.

Now that we are 2 years into his diagnosis, and his symptoms are developing, my fears develop right along with them.  It is no longer a simple case of learning disability and physical appearance.  The thing that I have come to fear the most about NF, is that we just don't know what is going to happen. NF is so unpredictable, the doctors can't tell us what is going to happen to Logan.  They don't know if he will go blind.  They don't know if he will lose the ability to walk.    They don't know if he will require a shunt.  They won't know what dangers Logan faces until he is actually facing them.  From the beginning we have been told that NF rarely causes these kinds of problems.  That the worst case scenarios were rare. Two years ago, we were told that we had a 10% chance that Logan would ever need to go through treatment. Yet here we are.  And still, we don't know if the treatment is going to work. I fear not knowing.

Tomorrow, Logan goes in for surgery to have his port put in.  This is a fairly simple procedure and I know Logan will do just fine.  He's been under sedation more times than I have and the procedure itself is hardly intimidating.  Yet, I am still scared.  Not for the surgery.  I fear that this is the beginning of a difficult time.  Logan will be beginning a year of weekly injections with medicine that will likely make him sick.  While we don't know how his body will handle it, the doctors have prepared us for worst.  Trips to the ER at the first sign of fever.  Nausea, fatigue, nerve damage.  I fear that Logan will be in pain and we don't even know if it is going to work.  I fear whether or not we have made the right decision.  I fear the mental, emotional, physical and financial strain that this year will put on us all.  I fear how his brother is going to handle these changes.  I try to not let it show, and if you talk to me, I probably say, "I'm fine", but the reality is I'm not. 

I am trying to stay positive and the best way I have found to do that is to just look at Logan.  He is happy.  He doesn't know he is "sick".  He LOVES going to the doctor.  He begs me to go to the doctor and gets sad when I tell him it's not time.  While most kids his age go to the doctor for one annual well-check, Logan averages once a month.  At times, he's had 4 appointments in 1 week.  And he LOVES it! He sings about it and tells everyone he can with excitement when he gets to go.  I hope he doesn't lose that excitement and he can continue to make me stronger. 

Why we are here

I'm not really sure why I am starting this blog.  It could be for me, to keep my thoughts and events straight as we are about to start a crazy time in our lives.  It could be for my son, to chronicle his battle with brain tumors.  It could be for my family and friends, to keep up to date on what we are doing and how Logan is doing. I love my family and friends and I am thankful for all their support, but I don't know if I can field the phone calls everyday to find out how things are going. It could be for another family battling NF, to reassure or educate them about our experiences.  Whatever the reason, I'm here and I'm writing.  Maybe I will feel like writing, maybe I won't.  I guess we'll find out.

One of the only recent family pictures and it happens to be a "silly face" picture

Who we are and how we got to this point: We are your average family.  Mom, dad, big brother Parker (soon to be 5 years old) and little brother Logan ( 3 1/2 years old).  When Logan was about a year old, I started to notice some things.  I didn't want to be one of "those mothers" who thinks every little thing is a problem.  We rarely went to the doctor for sick visits, we'd just deal with it at home. Logan was just a little behind.  He wasn't hitting his developmental milestones quite on time.  As a speech therapist, I'm familiar with these delays and have seen them in clients and students all the time.  To me, he was just on the late end of the developmental scale.  One day I started to notice large birth marks all over his body.  They were really faint, but once I started looking, I saw more and more (at least 20).  My first thought was that maybe he had some odd skin pigmentation.  No biggie. The more I thought about it, it was time for google (ok, so I THAT mom)  I came to find out that these birthmarks, or "cafe au lait spots" are an indicator for a condition called Neurofibromatosis when there are more than 5 large ones.  Logan has plenty, but I told myself there is no way he has a "condition".  The more I read, the more it sounded like Logan: large head, developmental delays, cafe au lait spots, bumps on the skin.  We were directed to talk to a genetic specialist.  Almost a year after my initial concern (due to the long wait for the specialist, long wait for the test results, etc) Logan was officially diagnosed with NF- type 1. (Click here for more information on NF-1)

Happy and waiting for his most recent

 MRI

Over the past two years, Logan has gotten 4 MRIs and has been followed by genetic specialists, neurologists and a neuro-opthamologist (some of the best in the country).  From the beginning, Logan's MRIs showed tumors on his optic nerve (Optic Nerve Glioma) and lesions throughout the brain.  Doctors were not too concerned about this beyond some close monitoring. After all, this is totally "normal" for NF. Maybe this was "normal" for the doctors, but no part about this is "normal" for a mother.  Follow-up MRIs showed minimal changes in the tumors and monitoring continued.  Logan's most recent MRI showed drastic growth and change in tumors on and around his optic nerves.  We were told that this degree of change is "troublesome".Even though NF is completely unpredictable, all of the specialist were convinced that, while we could wait another 3 months (later changed to 6-8 weeks), that we would be needing to treat at that time.  It was now the question that I never thought I would have to answer.  Do I put my son on chemotherapy or risk it another few weeks to see what effect the tumors would have on him?  According to the doctors, potential risks that were highlighted were lose of vision, interference with the draining of fluid in the brain (meaning he would need a shunt in his head) and loss of function on his left side (to name a few). The doctors also made it very clear that, should there be any damage or loss of function, it would likely be permanent.  After a lot of thought, discussion and insight from specialist and family, we decided that it was not worth the risk to put off what we would have to endure in a few short weeks anyway. Hardest decision of my life.

What will happen? First, Logan will undergo surgery to implant a port.  This port will be the access point to take blood and administer all of his medication.  He will then start weekly session where they will test his blood to make sure his system is strong enough to receive chemo that day, and then (if his blood count is high enough) he will receive his weekly doses.  This will go on for a year, with some short 2-3 week breaks every couple of months. Follow up MRIs every few weeks will determine if the chemo is "working".  That could mean that the tumors are shrinking or that they just stop growing. In the meantime, Logan could experience a wide array of side effects from the chemo but we won't really know how his body handles it until we have started.  I will try to keep updates as they happen and share the good, the bad and the ugly.  Knowing my son, I'm sure it will be a lot more of "the good".