Making Lemonade

There was nothing easy about being in Houston for radiation for 2 and 1/2 weeks.

There was 6 plane flights in 16 days.  Surviving on 3 to 4 hours of sleep every night.  Carrying thousands of pounds of boy and bags up and down 2 flights of stairs, in and out of the hospital and in and out of airports, planes, cars and buses.  Anesthesia every day that resulted in an angry, sometimes violent boy on many days.  Navigating a new city (with crazy streets and drivers) by myself.  Missing Daddy, Wes and Ellie.  Missing our home and all of our family, friends and familiar surroundings.  Running after an energetic, bossy and naughty 3 year old all day, with no breaks.  Not to mention trying to forget that Nate was having radiation pumped into his little body every day.

Then there are all the other babies.  The last few weeks have been really rough in the childhood cancer, and particularly neuroblastoma, world.  Every time I opened up Facebook or Caring Bridge, it seemed that another child that I follow and pray for had relapsed, progressing disease, or lost their fight.  It's a cruel reminder of the disgusting disease we are dealing with and how unrelenting neuroblastoma can be.  No matter how good a child is doing, they can be just one scan away from beginning their fight again, or preparing to end the fight forever.  Every day, I choose to put my faith in God and to not live in fear.  Some days, it's easier said than done.  I've had to temporarily pull away from Facebook in the last couple weeks for my own mental health.  I need to stay positive for myself, my family and mostly Nate.

So, that was the lemons...now, on to the lemonade.  We had a great time!

Nate loves an adventure and he loves Stephanie, Charles and Jen...so, he was happy as a clam.  I spoiled him rotten, like he was an only child.  We went to Target to let him pick out some special toys for Stephanie's house.  Nate hid in the clothes, then ran from me in the lingerie section as he took underwear off the shelf and chucked it at me (see...I told you he was being naughty).  Then, we hula hooped in the aisle and raided the half price Easter candy.

We went to the train park, the playground, the zoo, the aquarium, the space center, and the candy store.  All of those activities and Nate's favorite thing to do was to visit and pick up Stephanie from work.  Nate loved the plane rides and has become an expert traveler.  He can get through security faster than most adults and loves to send Softie through the x-ray machine. 

Our weekends home were awesome and SO worth the traveling.  They were filled with lots of time and fun with family and friends.  It was just what we needed to make the time go faster and help us get through the 2 1/2 weeks.  There's no way I could have gone that long without kisses from Wes, Ellie or Chris.

Our second week in Houston, Jen came to stay with us and help me with Nate.  Stephanie, Jen and I met in pharmacy school and have been the best of friends ever since.  Now that Stephanie lives in Houston, we don't get to spend nearly enough time together.

I love these ladies with all my heart and feel so lucky to have them in my life.  We've all been through a lot in the last 15 years and we've always been there for each other...no questions asked.

Never did I dream that I would have to ask these beautiful ladies to help carry my son and I through his cancer treatment.  I guess I didn't have to ask...they were just there.

Always there...to love and care for Nate, pick up bags I keep leaving behind, to make me laugh, to make me forget that we are in a radiation waiting room, to love me and support me whether I'm having a good day or bad, whether I'm feeling strong or weak.

I've always been very proud of my friendships and considered myself a good friend.  I have always, and will always be there for my friends when ever they need me...for things big and small.  I have always tried to do my best to be there for Steph and Jen and be the best friend I can be.  I sure hope I've been half as good a friend to them as they are to me now.

We also had a great support system at the proton therapy center.

The doctors, nurses, radiation technicians, child life and anesthesia teams were awesome.  Nate was very comfortable with everyone.  We also met so many nice patients and families.

There were mostly, older gentlemen patients at the center (proton therapy was originally developed for prostate cancer).  One very nice man who was a patient, was really touched by the child patients and wanted to put a smile on their faces.  One day he and his family, made a bunch of baskets with activities for the kids.  He also brought a bunch of toys another day, and on our last day, he provided free passes to the aquarium for all the children.  Such a nice man!

We also met some really nice families and children also going through radiation.  One little girl, was Ellie's age and entertained us every morning by toddling around talking about shoes and asking about the "baby" in the stroller, as Nate slept off his anesthesia.

There was also our good buddy Hayden, who is 6 years old and Nate loved to play with him.  I'm sure that he reminded Nate of Wes.  I really enjoyed talking with Hayden's mom every day and it was nice to look for a friendly face every morning.  We even went out to dinner with them one evening and let the boys play while we chatted and relaxed a bit.

Nate did REALLY well with radiation.  Most people say that it is definitely the easiest part of neuroblastoma treatment and, I would agree.  Some kids don't do so well though, so, I am very thankful that Nate did so well.

Other than, a bit of a decreased appetite and a weird little episode where he threw up a tiny bit in his mask, pulled it down under his chin, and kept on playing (3 year olds are gross!)...he really had no side effects.  No real nausea or vomiting and I didn't give him any anti-nausea medication other than what they gave him IV before radiation every morning.  He certainly did not have ANY fatigue!  He also never got any skin changes or radiation burns.

Jen and I were a little concerned that the radiation was actually making him stronger, like a real super hero, and he might start flying or climbing the walls...then, we'd REALLY have a hard time keeping track of him.

The hardest part of radiation was the anesthesia.  Most kids wake up pretty angry, and Nate was no exception.  The first week, we had 3 really bad days out of the 5...one in particular that involved a lot of violence.  It only lasts a couple hours, but it's physically and emotionally exhausting.  There is just nothing you can do but wait for it to pass and try to keep them from hurting you, themselves, or any one else.

I figured out after the first week, that Nate really just needed extra time to sleep it off.  They have to kick them out of the recovery bed pretty quickly because there are more kids finishing radiation, that need the beds.  If I could get him out of the bed and in to the stroller as gently as possible, then I could just sit around the proton center for a couple hours and let him sleep.  After I figured this out, he woke up most days fairly pleasant.

Nate finished radiation last Tuesday morning and we were home by that night.  I literally felt like I could have slept for a month.  I am just now getting some energy back.  It just took a lot out of me...geez, you'd think I was the one who got radiation!

We are very glad to be home, but we miss Stephanie terribly and I am pretty nervous for Nate's next step in treatment.  It's always nerve wracking embarking into the unknown, especially when everyone says how tough this therapy can be.  For the first time, though, I actually feel like I can see a light at the end of the tunnel.  If everything goes smoothly, Nate will start antibody therapy on May 10th, with a hospital admission on May14th.  He will have 7 weeks of hospital stays over the next five months, with his last stay ending September 7th.  He will then continue his Accutane therapy through the end of October.  I will explain more about this next step in treatment soon.

This week, Nate is going through a battery of tests to prepare for antibody therapy.  Hearing test, urine test, ECHO and EKG, GFR (kidney test), chest xray, CT, MIBG, PET and bone marrow biopsy.  I will let everyone know the results of the tests when I have them.  Please say a prayer for Nate as he goes through these tests.  We pray and BELIEVE that Nate continues to be NED and will continue to be NED forever.