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.

Everything's Great

I'm so sorry for the lack of updates.  I'm sure everyone is wondering how Nate is doing.  I will write a more complete update soon...most likely some time next week...but Nate is doing awesome.  Other than a few strange things, he really hasn't had any side effects.  He is FULL of energy, which is why I haven't been able to update the blog.  I have literally not had one minute available to get on the computer.  Nate has never really adjusted to the time change and is up until midnight every night, then up at 5:30am for radiation every day.  This makes Mommy tired too...so, I have been trying to nap with him every day...the days that he takes a nap.  Really, the amount of energy he has is incredible!!  I keep saying that the radiation must be energizing him...but, I think this is what 3 year old "normal" Nate is actually like...we have just never had the privilege of seeing him this way, and what a privilege it is.  So, I just wanted to take a quick minute to let everyone know that Nate is doing awesome and we are having a great time in Houston (despite missing Daddy, Wes and Ellie).  I will update more, when Nate slows down for a second...which I actually hope is never.

1st Day of Radiation

We had an absolutely wonderful Easter on Sunday.  I'll post some pictures when I get a minute to get them out of my camera.  Sunday night, Nate and I headed to the airport to catch our 8pm flight to Houston.  With the time difference, we got in at 12:30am, but Nate didn't sleep a wink on the plane.  Some kind gentlemen helped me get all of our stuff from baggage claim to the rental car shuttles and Nate promptly fell asleep in the stroller while I was signing the rental agreement.  By the time we picked up the car and got to Stephanie's, I didn't lay down until after 2am.  Radiation is bright and early at 7am, so I got up at 5am to make sure I knew where we were going and we wouldn't be late.  Everything is a well oiled machine at the proton center.  We check in, go down stairs and see the nurse for vitals, then Nate gets to play in the play room until they come get him for his treatment.  Softie got his radiation treatment first...administered by Dr. Nater.  We headed back to the proton machine which Nate calls "the Star Wars machine" (he calls all scan machines "Star Wars machines" too).  The machine is pretty intimidating...much, much larger than a CT scanner.  When he saw the machine, he said, "No!  I want the smaller Star Wars machine.", referring to the CT scanner.  The child life specialist was there to help me distract him, though, and he quickly forgot about his fear.



I sat on the end of the long table with him in my lap.  They hooked up his line to an IV pump and let Nate push the buttons to start his anesthesia.  The white medicine makes it up the tubes and through his line...he half screamed, then got completely limp in my arms.  The nurses and technicians helped me do the "proton dance" as I carried his limp body to the positioner at the other end of the table.  Softie and I gave him a quick kiss and went to wait in the waiting room.  I managed to only shed a few, silent tears.  The actual radiation treatment probably took about a half an hour.  They gave me a pager, like at a restaurant, that goes off when I can go back to recovery to see him.  For some reason, my pager didn't go off this morning and they came out looking for me.  When I got back to him, he was P-I-S-S-E-D.  I don't know if he would have been better if I got there a little earlier.  We will see how tomorrow goes.  He just didn't want anything.  He cried for Stephanie (who was at work), he cried for Stephanie's car, he wanted to go home (to Phoenix), he was just mad.  He fell asleep in the car on the way back to Steph's and after a little bit, it was like a switch turned on and he was happy and wanted an ice cream sandwich.  He's doing awesome!  No side effects, that I can tell, at all yet.  He ate well all day and was full of energy.  He was running around, tiring me out and being a total stinker.  I couldn't ask for anything more.  He is such a loving, sweet, funny boy.  I'm taking this time to soak up everything that is 3 year old Nate.  I pray that he continues to do so well, through this treatment.  One down, eleven to go.

While I am enjoying every, single moment with my sweet boy...my heart is heavy.  There are so many children and families suffering right now in our cancer and specifically, Neuroblastoma, community.  I don't know what is going on, but every time I turn around there is another child that is relapsed, progressing or suffering complications of treatment.  Neuroblastoma is a nasty, nasty disease.  Please take a moment and say a prayer for all the warriors and their families who are suffering so badly right now.  Brennan, Jake, Ila Jean, Emily, Ethan, Brooke, Codey, Jack and countless others that I don't even know about.  Please pray for all the children that are fighting through treatment and are doing so well (like Nate).    I pray for miracles.  I pray for peace and comfort for the children and their families.  I pray that those who are doing so well, will continue, and will beat this nasty disease forever.  Amen.

Normal

 We have all been enjoying "normal" life and all our time together.  There's been family dance parties and hours and hours of playing with siblings, cousins, neighbors and friends.  I've been able to attend several special events at Wesley's school in the last couple weeks...probably doubling the amount of time I've been able to spend at the school this year.

Nate has been very good about wearing his mask, so we have let Nate get out to a few calculated places as long as he wears his mask and I have lots of Clorox wipes and "hanitizer" in tow.  One of those places was to Wesley's baseball practice and game.  Nate sat and cheered, "swing batter, batter, batter" and "come on Wesley, you can do it".  He's his brother's biggest fan.  He also got to be a big team helper and help the coach gather up all the baseballs after practice.  Next year...he gets to play...I can't wait to see him on that field.

The kids have been outside every single day playing with the best neighbors on the planet until it gets dark.  The weather is beautiful and other than some nasty allergies, we are really enjoying being outside every second we can.

We've also had the small matter of a big boy's 6th birthday to celebrate.  I've been busy planning a special angry birds party for my sweet boy.  There's nothing Wes loves more than a well planned party and even though we had to contend with some major wind...I think the party was a hit.

Nate helped me fill Wesley's room with balloons, on his actual birthday, while he was at school.  Then we celebrated with Wes's favorite meal, Chino Bandito, some gifts and chocolate cake.  Really, unless a beach is involved, you pretty much can't beat all the fun we've been having over the last couple weeks.

 Tuesday, Daddy took Ellie down to Phoenix Children's Hospital for an ultrasound first thing in the morning.  You see...Ellie has a big belly (yes, I am aware that rhymes)...she also has some chunky thighs to match.  The problem is that a large abdomen is one of the possible signs of neuroblastoma.  Ellie is also almost 18 months old and there is a "magic" age cut off for a possibly better prognosis if neuroblastoma is diagnosed prior to 18 months.  The chances of 2 siblings having neuroblastoma is extremely, extremely rare...but, it does happen and I now have a hard time seeing a big belly as merely pudge.  So, Ellie asked me to please go ahead and get her an ultrasound again because she was tired of me squishing her belly and feeling for a tumor every time I changed her diaper.  The results were back almost before Daddy and Ellie got back from the hospital.  Thank the Lord, all that is in Ellie's belly...is Ellie...and too many "crackas".

 A couple hours later, I took Nate to clinic.  I couldn't wait to get him on the scale.  He hadn't been weighed in a week and he is starting to look so filled out.  He officially weighed in (without boots) at 16.6kg (up a full kg from a week ago)!!  That is the heaviest he has been since before his first surgery in July.  I am just so happy and so proud of him for how well he is doing.  All his blood work came back great.  His hemoglobin is coming back up on its own and is almost normal and his platelets are normal.  We got to meet with Nate's main oncologist and discuss the next step after radiation which is antibody treatment.  We started talking about some dates so that I can plan out the summer a little bit.  I hope to sign Wes up for summer camps while Nate is going to be in the hospital and I hope find a week that we can plan our normal, summer San Diego trip.  Nate has been talking about going to "our big house at the beach" (a condo we rented last year), since we got back in July (5 days before our world eploded) and I would love to make this happen for him.  I know that trip will help pull us all through this treatment a little easier...I really hope we can work it out.

So now I am frantically getting ready for Easter and packing for Houston.  I can't believe we leave on Sunday.  As much as I'd like to stay suspended in these last couple of weeks of fun that we have had, I am anxious to get another part of this treatment checked off our list.  I'm nervous but I know Nate is a true super hero and I know he will power through this just like he has powered through the last 9 months.