3 Years in Remission

"There are moments which mark your life.  Moments when you realize nothing will ever be the same and time is divided into two parts, before this, and after this." -Unknown


January 13th was the day that marked 3 years in remission for Jackson.  What a wonderful day for us!

I know that many people have stopped blogging.  And in that case- many people have stopped reading blogs.  But I wanted to update this to update hope.  Hope for those families currently fighting AT/RT.  Because the fight is real, and it continues for too many.

Jackson is healthy and happy and in remission for the third straight year.  This miracle does not escape me.  They gave him a 10% chance of survival, yet he's here.

We are dealing with long term side effects now.  A constant runny nose, some bladder issues, along with other issues due to radiation.  But to look at our boy now- you'd never know the battle he fought.  You'd never know- and we love it that way.  To everyone he meets, he's just a normal kid.  A super polite and helpful boy.  A boy who torments his little sister and rolls his eyes at his Mama.  A boy who idolizes his Daddy.  A boy who hides treasures along the baseboards in his room- thinking that if it's not in the middle of the floor, then his room will be considered clean.

Hope is real.  Never give up hope- it was the only thing I could grasp onto some nights in the quiet hospital.  Hope that life does go on.  Hope for another day.

Cancer. Free.

Jackson had scans again in June.  Everything looks perfect.  Still cancer free.  No Evidence of Disease (NED).  Officially, he's 2 years and 7 months off treatment and doing amazing.

Life has moved on, and we're back into our normal routine of dinner around the table every night at 6:30.  School starts in a week and Jackson will be entering the 3rd grade.  What a blessing.  At his 2nd grade year end program the kids sang a song about shining, and one of the lines they said was something about "See us shine."  I don't get teary eyed much about cancer anymore.  Honestly, I feel like we've moved on, but when they sung that line in the song, I did get a little emotional.  It's so nice to be on this side of things.  It's so good to see my son active and healthy and free of cancer.  Looking forward to the future.  Oh the possibilities.

1 Year 8 Months

One year and 8 months off of treatment and still cancer free.  Nothing short of miraculous.

Lots of hugs from Doctors, nurses and friends who battled along side us.

A perfect way to wrap up National Childhood Cancer Awareness Month.

No News is Good News

Jackson is officially more than 1 year off of treatment.  One year is a huge accomplishment!  And still CANCER FREE!

I know many of you followed this blog so closely for a long time.  And for a long time I was pretty regular updating it, and keeping you all informed more or less of the things we had going on in our lives.

Like this blog post is titled, "No news is good news".  It's true.  No news on this blog means that everything is going great.  

Since August, Jackson has had 2 additional clinic visits, and additional MRI scans.  The doctors said that he still shows No Evidence of Disease (NED).  What a wonderful relief for all of us.



I'd like to give you a little update on Jackson, just so you can see that there is life after cancer.

Jackson is happy, and healthy.  His blood levels are almost back to normal after one year off of treatment.  His platelet levels are still low hovering around 100.  His liver is finally reporting healthy numbers- they think it was damaged during chemo, but finally the numbers are all in normal ranges.  Jackson has grown quite a bit taller (which is a nice surprise- although he's still pretty small).  Many of you know that one of the first signs that we noticed of Jacksons' cancer was that his left eye was turning in towards his nose- due to the tumor pressing on his optic nerve.  After his treatment was over, the doctors wanted to wait to see if his eye would go back to normal on it's own.  After several months they determined that it was not going to rectify its self, so the doctors went in and did eye muscle surgery.  The results are amazing, and we are so incredibly happy.  I took pictures of his eye before and after the surgery- I thought it was a strange thing to document at the time, but now I'm glad I did it.  Jackson is now 4 months out from eye surgery and looking at him, you would never know he had any issues.

One other health issue that we've had to face after cancer is that Jackson has had several ear infections, and a constant runny nose.  Because of these issues, we were able to visit an ENT doctor.  The doctor told us that the lining in Jackson's ears has been permanently damaged from the Radiation Therapy that he underwent to beat his cancer.  Because of the damage done, the fluid in his ears is no longer able to drain properly.  To fix that problem, the doctor put tubes in his ears.  Since that day, Jackson's hearing has improved tremendously, and we haven't had to deal with any ear infections.

During the surgery when Jackson got his tubes placed, the doctor decided to scope Jackson's nose to see if he could find a reason for the constant runny nose.  Seriously- constant snot- not real flattering.  The doctor told us that Jacksons Adenoid is fine, but that he is incredibly inflamed due to radiation therapy, and also that there is quite a bit of damage in Jackson's sinuses caused by his brain surgery, along with damage from radiation.  It turns out there is nothing they can do to help fix Jackson's runny nose until he's older (like age 16) because there isn't enough room in his tiny head to fix the scar tissue. I guess when he's older, his head will be big enough for them to get in and hopefully help the issue.  Until that point we'll stock up on Kleenex- and Jackson will have to deal with an overwhelming amount of snot.  A never ending runny nose.  So, if you see him- no, he's not sick- he's healthy, but his sinuses are messed up.  I always feel guilty taking him to clinic an not having a mask on him.  I am sure the other Cancer Moms freak out when they see that snot flowing freely- and assume he's sick.  I promise, I'd never take him around another Cancer Fighter if he was sick... the runny nose is just another battle wound.

Other than the runny nose, eye surgery, follow up MRI's and clinic visits- Jackson is a normal, healthy, happy, amazing 7 year old.  Doing normal kid activities.  Homework, reading, swimming, go karting, karate lessons, coloring on the sidewalk, riding bikes, sledding in the snow, climbing rocks, jumping on the trampoline, all normal kid activities.  All things we are so grateful that he gets a chance to do-  still amazing us everyday.

7 Months After Chemo

7 months after Jackson's last Bone Marrow Transplant, and I am ecstatic to share our good news.  Jackson has officially been declared:

In Remission!!

I almost fell off my chair when the doctor actually said the word "remission" to us.  I didn't think we'd hear that word until Way WAY down the road.

Here we are, living our life like normal.

Normal.

I never thought we'd find it this way again.

Jackson started 1st grade this week.  Like a normal kid.  Happy.  Excited.  Nervous.  Normal.

He can run, jump and keep up with the other kids... he's just a little shorter.

Normal.

I never thought I'd want to be normal so badly.


But maybe normal isn't the right word.  Maybe I should use the word 'Extraordinary'.

Yes, that's it.

We are living an extraordinary life.

My son is extraordinary.

My son is an AT/RT Survivor.

Shhh.

I'm afraid to say it out loud, and yet at the same time, I want to shout it from the mountain tops.  Jackson's scans showed "NAD" or No Active Disease!!

I guess he's in remission.

We are finally where we've been trying to get for a year.

But I'm afraid to say it out loud... because what if that jinxes us?

Jackson's counts are finally coming back up.  He goes out in public with out a mask on now.  The only thing we have been waiting for is for Jackson's body to grow platelets so that we can get his central line out.  But- things there are looking up too... Jackson is scheduled for surgery this week (contingent upon his counts).

We feel so lucky.  So blessed.  So grateful.

But I'm still afraid to say it out loud.  In fact, I can't say it out loud with out getting teary eyed... my gratitude and joy just overwhelms me.

So, for those of you who have been waiting for an update... please feel free to celebrate with us!  But do it quietly, because I'm afraid if we all cheer too loudly that it'll jinx us- and we don't want to have to fight for Jacksons life again.

Returning Back to Normal

Over the last year I've longed for our old 'normal', for a while we were uprooted and thrown into the cancer world. We spent days and days at the hospital. We spent hours in doctors offices, and we spent several nights inpatient. We ate more cafeteria food than anything home made, and we struggled to keep our family together. We spent 93 days inpatient in the ICS unit in 2011... 93 days is an awfully long time. We struggled during each and every one of those 93 days and we often struggled in the other 272 days that we were lucky enough to be home. But now, we are finding our place again.

Returning back to normal has been so natural in some aspects, and in other aspects it has been such a struggle. Jackson is doing incredibly well. He is getting stronger each day, and he is so happy to be 'done'. We still have visits to the hospital, but only twice a month at this point. We don't know if the chemo worked, but we are hopeful, and prayerful, and optimistic.

Jackson's body has been through a lot, and although his hair has finally grown back, his body is still recovering from the extremely harsh bone marrow transplants that it received. Jackson's platelets are still extremely low at around 20...normal levels are between 150 and 450, but they have decided to not transfuse him until he either has extreme nose bleeds that will not stop, or until he gets to 10 or below. So far his body is making a few platelets here and there, but he is not recovering they way they expected him to recover.

After a bone marrow transplant, the doctors have certain guidelines and rules that each patient must follow closely for the first +100 days. Today Jackson is on day +86... we are so close to that day +100. Around day +100, they will allow Jackson to return to a normal diet again... which he can't wait! Of all the things he is DYING to eat, he is the most excited for....get this... Cafe Rio. Yep, I guess he is my son after all... even though he looks more and more like his Daddy every day.

Day +100 is a big deal. I am so excited for April 22nd!

As far as returning to 'normal', to be honest, it has been wonderful. I love that my boy is out riding his bike again. I love that he is playing and running and laughing. I love that he is alive... what a blessing in that alone.

I have recently been in touch with a new family from Texas that has a little boy that was recently diagnosed with ATRT. My heart goes out to them and their little guy. Reading emails back and forth from them has been difficult for me, because I remember all too clearly the emotions that I felt at Jackson's diagnosis. If you have time, you can check out their blog, and I'm sure they would appreciate any prayers you could send their way.