The Truth 365

Please watch this documentary and share with everyone you know. Many of the children in this film are our friends, they are not nameless, sad faces. This is our life. This is why childhood cancer needs our help...this is what YOU can do about it. Thank you!

What a Difference a Year Makes!

 

One year ago today, we were in New York City at Memorial Sloan Kettering Cancer Center so that Nate could have the remainder of his tumor removed by the expert hands of Dr. LaQuaglia.  With the tumor successfully and completely removed, that was the day that Nate became NED!

 

A couple weeks ago, after a week of testing, we learned that Nate is still NED!  NED for one whole year!  That sure is a nice start on FOREVER!

 

Nate was a very good boy for the long week of scans and tests.  They poked and prodded, and he smiled and goofed around.  It never ceases to amaze me how normal all of this is to him.  I enjoyed the one on one time with my sweet boy.  I was a little nervous when we went in to get results.  While Nate has been taking Accutane up until the beginning of November, he finished the last really effective anti-cancer treatment (antibody) in July when he had the deadly reaction.  So, he'd been off of intense treatment for almost 4 months.  Several people offered to go with me for support but, I guess I'm a little superstitious, I wanted to go by myself.  I have always gotten all of Nate's scan results by myself...except the first ones at diagnosis.  They have all been great news...except the first ones.  Before Nate's oncologist came in the room, we met with the fellow, who has been with us since the very beginning.  She walked in the room and immediately said, "the scans are great".  Whew!  Big sigh of relief.  Both the fellow and Nate's oncologist went over all the tests.  Everything was all clear!  Nate's heart and kidneys are perfect, like he never went through treatment.  There is still a possibility that heart and kidney problems could present themselves...but, perfect is a great place to start!  We discussed the next steps to get Nate enrolled in the next trial, which we are still working on.  Then, they printed out a post-treatment follow up schedule for Nate (with all required appointments, tests and scans) until he is a teenager.  For some reason, this is what got me.  Seeing all these years in his life on paper, when we weren't sure we would even get him to 4, was very emotional.  I cried, hugged and thanked our oncologist and fellow, two of the many, many, many people who have helped to get Nate to this point.

 

Nate also had an audiologist and dentist appointment in the last couple weeks.  His hearing aids were turned up to prescriptive levels (the audiologist has been turning them up slowly, so he can get used to them) and he is still doing really well with them.  He never complains about them and remembers to take them out before getting in the bathtub (unlike Mommy, who dumped a cup of water over his head with them in once...oops).  The dentist report was actually very good!  His bottom teeth are brown because the enamel has been worn away from treatment and vomiting.  I assumed they would find cavities galore...but, no cavities!  There is one spot that we need to watch and will probably have to be filled eventually, but we are going to do what we can to strengthen it.  There is no telling what shape his big boy teeth are in.  Treatment usually causes many of the adult teeth to be absent or malformed.  I was pleased to see his front 2 big boy teeth on the top and bottom look good on x-ray.  We will have to take future dental problems as they come and deal with them...but, we are really happy with his current report.

 

I look back at where we were last year...in a hospital, on the other side of the country, trying to help our son recover from major abdominal surgery.  Then, the downhill turn Nate took from there.  The horrible holiday season, spent in the hospital, our family separated, watching Nate in so much pain...starving.  It really doesn't seem real.  Did we all really go through that?!  It seems impossible.  How did we make it from one day to the next?  Then tonight, I was cleaning off my desk where I found every card and note we have been sent or given this last year and a half (I've saved every single one to make a book for Nate).  I guess that is how we did it...with so much love and support from everyone around us.  I always hear that God won't give you more than you can handle.  I'm not sure this is true...because, really, how could ANYONE handle being given something like this?!  I think it's more like, God will help you handle what you are given.  Through every person that lifted us up during this worst time in our lives, God helped us handle it.

 

We are so incredibly thankful that Nate is doing so well.  We don't forget for one second that he is one of the lucky ones.  We are living every day to the fullest and trying to fulfill Nate's desire for adventure and memories.  We are going to have the BEST Christmas season this year.  No hospital...ALL family time!  We are so excited!

Nater Report!

I am so sorry I have not written in so long.  I am so sorry if I have worried anyone.  We have been busy trying to pick up the pieces to build our new life and trying to enjoy every moment we have together.  I have been updating Facebook fairly regularly with quick Nate updates.  If you're on Facebook, please "like" his page at www.facebook.com/supernatedinoffria.  If you're not on Facebook, no worries, I promise to try and be more consistent with the updates on here.  It is very important to me to continue to share Nate's story.  To continue to spread awareness of childhood cancer, childhood cancer treatment and the effects it leaves behind.  I also want to share the joys and triumphs in Nate's life for those of you who have come to know and love him and especially for the parents of newly diagnosed children.  When your child is diagnosed with neuroblastoma, it is virtually impossible to find success stories on the internet.  Partly because there are so few, but mostly because parents stop writing when their child is doing well.  They are too busy living life, which is awesome, but I want Nate's story to be a beacon of hope to those in the dark days of diagnosis and treatment...until there's a cure.

 Nate has been so busy having fun, fun, fun and LIVING life!  We were able to delay our annual family San Diego vacation until August and get Nate to the beach...as he had been asking for all year.  He loved spending time with his family, digging in the sand, visiting Sea World, and riding bikes and roller coasters.

 We came home from our trip to a very special delivery of some very special shoes from Peach's Neet Feet, a spectacular organization started by a remarkable young woman, which hand paints special shoes for children with life threatening illnesses and other conditions.  Nate's special shoes have a Super Nate symbol, a rocket, a gold ribbon for childhood cancer and a picture of Softie.  He LOVES them and has worn them almost every single day since receiving them.

We got word at the end of August that Nate could have his central line removed, since he was finished with all of his intense IV therapies.  It has been such a blessing to not have lines to worry about anymore.  No more dressing changes and central line care, no more worries about central line infections, and best of all...swimming and baths!

Nate swam almost every day, from the day after his line was removed until the pool got too cold.  He would take a bath at night, and take a shower with Daddy in the morning.  We also felt safe to visit splash pads and go camping.  Camping!  Something else that Nate had been asking to do all year, but we were too worried about dirt and his central line.  We managed to sneak in 2 camping trips with our best friends before it got too cold.  He played and explored, rolled in dirt and swam in the stream.  So much fun!

We have so enjoyed being at home as a family, uninterrupted.  Wes and Nate can play for hours, with just their imaginations.  When Wes is at school, Nate and Ellie are as thick as thieves.  Nate is SUCH a great big brother, he is constantly trying to take care of Ellie, even when she doesn't want the help.  One of my best friends nicknamed them Team Wrecking Ball.  They can dismantle a room in a matter of seconds.  They truly are teaming up against us.  Nate climbs up to reach snacks for them both and they lock themselves in a bedroom and eat as fast as they can until Mommy can get the door unlocked.  They lock the bathroom door and squirt toothpaste and splash water...somehow so quietly, so I don't know what's happening until it's far too late.  They've drawn on each other's arms, then once Ellie let Nate draw all over her arms, legs and face with a red (non-washable) marker...again, so quietly.  I can honestly say, after a sigh...and maybe a time out...I genuinely enjoy these moments, even if I don't enjoy cleaning up the mess so much.  I hope I always, always remember to enjoy every single moment of their childhoods...messes and all.

 Nate has been taking a music class and a gymnastics class.  Both classes are so good for him to get to spend some time with teachers and kids his age.  A pseudo-preschool experience to replace what he is missing out on this year.  He is VERY much looking forward to going to school next year...just like his big brother.  The gymnastics class has also been very good for his balance, flexibility and physical confidence.  Luckily, he was not left with any major physical deficits...but the small deficits are there and he is working through them and catching up, little by little.

Since Nate's line was removed, he now has to have a needle stick every time we go to clinic, which has been every 2 weeks during his Accutane treatment.  He has done very well with these.  Of course, it is not his favorite thing, but he is super tough and takes it like  such a big boy.  Only once did they have trouble getting blood and it was pretty stressful, the other times have been pretty smooth.  He has even chosen to do it without numbing cream.  He finds having to wear the numbing cream, with plastic wrap over it, for the 30 to 60 minutes before the needle stick to be more irritating than just getting poked without the cream.  Really, such a tough kid.

 We have been doing bits here and there to raise awareness and dollars for childhood cancer.  We still have so much more we want to do.  We will dedicate our whole lives to this cause.  For now, we are starting small and figuring out where we can make the greatest impact.

Nate has really just enjoyed being a "normal" boy, so much.  We are spending as much time with our family and friends as possible, because really, truly, THAT is what life is about.  I have no doubt, life is about our human connections and we are trying to make the most of them.  Nate has been able to enjoy so many thing that were so difficult for him last year.  Parks, birthday parties, family birthdays, amusement parks, trips, "quiet" days at home...he is enjoying it all.

 All throughout his treatment, Nate rarely complained.  He almost never expressed concern about missing out on things, even though he missed out on so much.  Nate only even asked to go home from the hospital a couple times.  He just went with the flow, somehow knowing that these treatments were the most important thing.  I really didn't think he even knew he missed out on anything, even though it was so hard on me to see him miss out.  He knows, though.  He knows to make the most out of every moment.  He wakes up in the morning and says, "What are we doing today Mommy?  Where am I going?".  He wants adventure and memories and we are trying hard every day to give that to him.  He was SO excited about Halloween, enjoyed absolutely everything Halloween related and had so much fun.  Now that Christmas decorations are already showing up all around, he is getting so, so excited...and we are so, so excited for him.  He deserves to have absolutely nothing but fun and joy this Christmas season...last Christmas season was so hard.

Nate now has mild to moderate high frequency hearing loss as a result of chemotherapy. It is not quite enough of a deficit to notice.  He compensates for it pretty well.  Long term, though, it will definitely have an impact on his learning and reading.  So, he was fitted for hearing aids in the middle of October.  Nate chose his favorite color, super hero red, and has done really well with them.  He has no problem wearing them and seems to like his "super ears".  When I first asked him if he liked them, he said, "Yeah!  Now when I talk, I can hear the words in my mouth.".  We'll take it.  I think it's his 3 year old way of saying that they are helping him.

Nate finally completed front-line Neuroblastoma treatment on November 5th...after 16 months.  The short description of the treatment he went through over the 16 months is...6 rounds of chemo, 2 major abdominal surgeries, a stem cell transplant, 12 doses of radiation, 3 rounds of antibody and 6 rounds of Accutane.  Sixteen months ago, I can honestly say, I didn't see an end.  It seemed so far away.  We are thanking God and are so, so grateful to still have such a happy, healthy, goofy boy at the end of all that.



Unfortunately though, this is not the end for Nate.  We will keep updating, but we have chosen to enroll Nate in a 2 year study for Neuroblastoma children in remission.  The study uses an oral medication, DFMO, that has shown little to no side effects and they are hoping, will help keep kids in remission.  We feel like the timing of this study has kind of fallen in our laps.  It will not require any hospital admissions, but will require some travel.  We will keep everyone updated as we learn more.

This week is scan week.  One of my least favorite things.  Tomorrow, Nate and I will spend the whole day at the hospital while he gets kidney and heart tests done.  Then, he will be injected with a radioactive marker for scans on Wednesday.  Wednesday, Nate will be put under anesthesia for a CT and MIBG scan, and bone marrow biopsies.  Thursday, we have an appointment for results.  This week sucks.  We are acutely aware that by the end of this week, our world could come crashing down again and Nate could be in for a fight for his life.  I am praying every moment for the strength to BELIEVE...and to not pass out and/or vomit.  Please keep Nate in your prayers this week as we wait for those 3 letters that we love so much, the 3 letters that will allow Nate to continue to live his life to the fullest...NED!

I Back Jack

Please take 5 minutes to watch this video.

From Jack Bartosz's CaringBridge today:

     "People know me for my happiness. I don't want people to think of me for sadness."
     ~Jack Bartosz (August 24, 2012)

     At 4:15 this afternoon our perfect boy found his ultimate cure.

     Jack Thomas Bartosz:  October 4, 2001 - August 27, 2012

     "And we wept that one so lovely should have a life so brief." ~ William Cullen Bryant


Neuroblastoma claimed this sweet boy today.  An average of 7 children are taken by cancer, every single day.  September is coming.  September is Childhood Cancer Awareness Month.  Please don't let this be how Jack, or any of these children's story ends.  I will try my hardest to be a hero for these kids.  A hero like Super Nate.  Will you be a hero too?

Here Comes The Sun

This is hard to write about, it's hard to relive, but it's part of Nate's story...so, here goes.  He sailed through days 1 and 2 of round 3 of antibody.  Other than a little coughing here and there and a little fatigue, he had very little side effects the first 2 days.  He was up, playing in the play room, wandering the halls and eating well.  We didn't even have to push his morphine pump button.  By Tuesday afternoon, when I left him with Lou Lou to go home and have dinner with Wes and Ellie and get ready for work the next day...he was starting to get more worn out.  When I got back to him Wednesday night, after working all day, he was clearly struggling to breathe.  Papa and Grandma said he had a decent day, but his breathing started to go downhill that night after Linde got there.  I argued with the nurse and RT until they gave him a breathing treatment, which had helped his coughing on Monday and Tuesday.  It helped a little, but the blow by oxygen they were using, wasn't quite cutting it to keep his oxygen saturation up.  We got him to wear a nasal cannula oxygen which helped him breathe a little easier and get a little rest.  Thursday, he wasn't breathing well at all.  He was on 4 liters of nasal cannula oxygen and barely holding steady with his oxygen saturation.  If you took the nasal cannula away, his sats would drop quickly.  He only had Thursday's antibody to finish.  They just wanted to get him through it and once it stopped, everything would start getting better.  The infusion ended Thursday night at about 8pm...his breathing wasn't getting better.  I spent all day Thursday and Friday sitting in bed next to him, watching him breathe...waiting for it to get better.  I didn't eat, shower, sleep or change...I just watched him breathe.  I knew in my Mommy gut that something was very wrong...they just kept thinking it would get better now that the antibody was turned off.

It became apparent on Friday that we were not going home as planned.  They did a chest x-ray about 4pm on Friday and it showed some congestion, but again, they expected for it to quickly clear up now that the antibody was stopped.  We were expected to spend the night Friday night and head home in the morning after the oxygen was weaned down.  They tried a different breathing treatment that forces oxygen into the lungs and can help get the junk out, and it seemed to help.  We were able to turn the oxygen down to 3 liters after the first treatment.  As the afternoon wore on, the oxygen had to be turned back up.  It was time for another treatment and the RT got there to do it at about 7pm.  While doing the treatment, Nate was very, very uncomfortable.  Writhing and kicking around.  I couldn't see the oxygen saturation monitor from where I was sitting and trying to comfort him...he started to look blue.  His sats should have shot up to 100% during the treatment, instead they dipped down into the 70's.  They stopped the treatment and put his nasal cannula back in...his sats took FOREVER to climb back up.  The nurse paged the doctor on call.  The doctor wasn't answering the page, so they called the assessment team...a step below calling a code.  Doctors and nurses swarmed the room, right as Daddy got there to switch me.  The doctors quickly made the call to get him down to the PICU.

As I sat on his bed and held the oxygen mask to his face while trying to comfort him, tears streamed down my face as they rolled us through the PICU.  I couldn't believe that Nate had RUN into the hospital on Monday, taller, stronger, and weighing more than he has all year...and here we were, right back where we started this journey almost exactly one year earlier.  The PICU team quickly went to work trying to figure out what was going on and what they could do to support him.  They put him on a stronger nasal cannula machine and tried to make some plans, warning us that intubation was a possibility.  Papa and Lou Lou arrived, Nate was fairly stable and we made the decision for me to head home.  I was completely beat from the previous two days and someone had to go home to relieve Grandma and Linde, who had been with Wes and Ellie all day.  I asked Chris to keep me constantly updated via text and phone.  I wasn't there for what happened next, but I am so thankful that Chris's parents were there to support him and Nate.  His sats started to drop and they made the decision to intubate.  He was intubated, but they were having a hard time stabilizing him.  Lou Lou said his sats dropped, then his heart rate, then his blood pressure...he went into shock...we could have lost him.  I was at home, getting texts from Chris saying, "My parents are coming to get you.  I want you here.  He's not stabilizing".  I have never once in my life been as scared as I was that night.  I ran around my room, threw on clothes and screamed at the top of my lungs.  I fell to my knees and prayed. " Lord, please save my baby".  I can't imagine what Chris, Lou Lou and Papa were feeling watching it happen.  Chris says he is very glad that I wasn't there.  The Lord and the doctors did their work and Nate was soon stabilized.  I stayed home with Wes and Ellie and Papa and Lou Lou took care of Chris and Nate.

So, what happened?  Antibody therapy can cause this.  It's called capillary leak and/or cytokine release syndrome.  Simply put, the antibody stimulates your immune system to react and in this case, the immune system goes into overdrive causing an allergic reaction and leaking of fluids from where they should be, to where they shouldn't be.  The chest x-ray from 4pm showed slight lung congestion.  A chest x-ray in the PICU at 9pm showed lungs filled with fluid.  At about 11pm, after intubation, another x-ray showed lungs completely filled with fluid.  In 5 hours, fluid rushed into his lungs, making breathing on his own impossible...a reaction to the antibody treatment.  All we could do now is let the ventilator support his breathing while we waited for his lungs to heal.

He was on the ventilator, hooked up to 14 machines pumping medication into his little body.  Every day medications were weaned and changed.  We watched the chest x-ray improve every so slightly every day.  We attended doctors rounds, watched monitors, and helped the nurses care for Nate's body while we talked to him, read to him, touched him and kissed him.  As the paralytics and sedatives were weaned, we did our best to keep Nate comfortable.  We had some spectacular RTs that were able to get some major junk out of his lungs with breathing treatments and he really started to improve.  By Friday morning, the ventilator setting had been weaned all the way down and Nate was breathing all on his own with the tube still in.  His sedative medications were weaned down in preparation for extubation and Nate was awake.  He was awake and scared.  He couldn't move (restrained to the bed, so he wouldn't pull the ventilator tube out) or talk.  I watched his lips try to  say "Mommy", and he cried and cried when no sound came out.  I tried to comfort him the best I could until they were ready to extubate.  We "watched music" on his iPad...all his favorite songs.  He even tried "dancing", waving his head back and forth and moving his legs.  At about 2pm, they were ready to pull the tube.  It was pretty anticlimactic.  They pulled the tube out, he gagged, and continued to breathe fine on his own.  I told him he could talk now.  He was scared.  I told him, "say Mommy".  He squeaked out a quiet, raspy "Mommy", and I hugged him and cried and cried.  The nurse said, "It's ok to cry, Mommy, this has been hard".  It was just so nice to hear her say that, to have some permission to let my pent up emotions out.

He rebounded so quickly.  I was so afraid that all the good work he has done in the last few months to get so strong would be out the window.  Not my super boy.  All the doctors were amazed at how quickly he recovered.  Honestly, I wasn't that surprised.  I know my boy, and I know my God.

He was back on the oncology floor on Sunday and we were home Monday.  He had been on VERY heavy duty pain and sedation medications while on the ventilator that had to be weaned very slowly so that he wouldn't have withdrawls.  It's been a little rough the last couple weeks, only because we have to give him a sedating medication every 4 hours which hasn't let him get back into a normal sleep cycle.  We didn't do much sleeping the first week home.  As the doses have been weaned, he has gotten back to sleeping all night the last few nights.  He is still a little more sleepy during the day than normal, but we just gave him his last dose of sedation medication tonight, so we hope his energy will be 100% again in the next couple days.  His eating never skipped a beat.  In fact,  I think he's eating more than ever, which I am so, so thankful for.  When we checked in for antibody, he weighed 17.1kg, the most he's ever weighed.  At clinic on Monday, he weighed in at 17.3kg!  His mobility is pretty good too.  Almost back where it was.

So, what does this mean for his treatment?  I had a good talk with his oncologist on Monday and he will not be doing any more antibody treatments.  His oncologist does not recommend it and said the only way they would do any more would be to put Nate in the PICU again, intubate him, give the antibody, then keep him intubated for a week or more afterwards to recover.  He also said that next time he would likely not only have lung involvement, but also heart, kidney, liver and who knows what else.  No thank you!  Nate is the 1st patient at PCH to not complete all 5 rounds.  Nate is also the 1st patient in the country to have to stop after round 3 (most kids that have had to stop do so after round 4...the "hardest round").  Leave it to Nate to be the 1st.  He's always breaking the mold.  I know a lot of people don't quite understand the importance of this antibody therapy.  Nate's in remission, right?  Why does he need these treatments anyways?  The latest studies show that completing all 5 rounds gives kids a 20% greater chance at not relapsing.  The more rounds completed, the better the chance of not relapsing.  Again, relapsed neuroblastoma has "no known cure".  This antibody treatment, while difficult, is a HUGE breakthrough in neuroblastoma treatment.  We really wanted Nate to complete the treatment.  It's just not in the cards for him.  I'm honestly not scared though.  I firmly BELIEVE that for whatever reason, 3 rounds of antibody was all that Nate needed.

Nate will continue his Accutane therapy through the beginning of November.  At the end of Accutane we will probably be enrolling him in a 2 year, Phase II clinical study for children in remission,  It will involve an oral medication with a good side effect profile and travel every 12 weeks for scans.  I will give more information as we find out more.

So, where does that leave us?  Are we done?  We are in a very confusing place.  This is not how we expected this to go.  Assuming no admissions for infection or fever, God willing, Nate is completely done with hospital stays.  Is he done with cancer?  Well no, and unfortunately, we are realizing that he never will be.  There will always be medicine, maybe more studies (as more breakthroughs are made), scans, blood work, oncologists, hearing aides...there will always be something.  We are BEYOND grateful to be where we are.  No more hospital stays?  Are you kidding me!?!?!  It's beyond awesome!  It's just that we've been racing towards a finish line all year long and now we're here, looking around and realizing there is no finish line.  It's a weird feeling.  Chris and I also feel like we've been in prison all year and are now being released back into society.  We've spent the whole year living in crisis mode.  Only able to look hours and days ahead.  Small every day things like, grocery shopping, meal planning, and exercise seem foreign.  We've only been able to live "normal" lives involving these "normal" things for a couple weeks at a time before crisis mode kicked back in.  Can I actually plant my garden again this fall?  Can I sign up for another triathlon?  Can I commit to volunteering regularly at Wes's school?  I'm almost scared to do these things.  Like I don't deserve to be able to do these things or that I will jinx Nate's health status.  We've let go of almost everything that seemed so important in the past.  Can we add a few of these things back in to our lives?  I know we will figure it out.  We are taking our time and taking things slowly.  How do you go back to living your "old life" now that you are a completely changed person?  How do you go about living in this world with your eyes wide open?  We will figure it out...and I know it will be even more spectacular than it was before.  As Nate and I got into the car on Monday after clinic, and discussing Nate's treatments with his oncologist, "Here Comes The Sun" was the first song that played.  Tears welled up in my eyes...here comes the sun, indeed.

Friends Like These

This evening I went to the "family room" at the hospital to heat up my Lean Cuisine.  The family room is usually pretty empty.  Tonight there were four teenage boys (one of them hooked to an IV pole) playing poker, laughing, and picking on each other.  There was even a bag of snacks.  As I waited for the microwave to beep, I watched them out of the corner of my eye and grinned ear to ear.  I wonder if those three boys know what special friends they are.  There's not a lot of "normal" here on the 7th floor...and right there in the family room was a little pocket of "normal".  Teenage boys being teenage boys...cancer or no cancer.  I am so grateful that this boy has friends like these...friends that can make the cancer disappear, if only for a few hours.

Then, I had to fight back tears as I realized that we have these friends too.  We have so many special friends that have cared for us this year, but there is one sweet family who has taken extra, special care of us.  They've brought us food at home and the hospital.  They've come to visit and hang out at the hospital and spent almost every Saturday night that Nate was in the hospital, playing cards and eating snacks with Chris after Nate went to sleep.  When Nate was the absolute sickest he has been in this journey, when we felt the least "normal", and we were the most scared and alone.  They came to our house, made us dinner, and just hung out...like nothing was different.  They were there as we were glued to our son's side, catching his vomit, cleaning what we didn't catch, stopping nose bleeds, giving shots, giving medicine, yelling at each other because we were stressed, tired and scared.  They didn't retreat, they didn't flinch.  They continued to come over and take care of us as we took care of Nate.  Thank you Woods family, we hope you know what special friends you are.  Your love and friendship over the last 15 plus years has meant so much...but this last year, it has meant the world.  We love you!

Nate started Round 3 of antibody today.  We are very grateful that he was able to start today, on schedule, after the fever scare and hospitalization he had last week.  Starting round 3 on time means that our annual San Diego vacation should work out perfectly.  We just have to pray for no more fevers or infections.  He has been doing really great today.  The first day of antibody for rounds 1 and 2 were pretty rough with lots and lots of pain that started about 2 to 3 hours after the antibody started.  We got 4 hours in and Nate wasn't complaining of pain at all.  Then, he started coughing uncontrollably...just when we think we've got this thing figured out he comes up with a new side effect.  The antibody was turned off and an antihistamine was given...but the coughing didn't let up.  His lungs were clear and his oxygen level was fine, but the coughing wouldn't stop.  The nurse actually got a dose of epinephrine pulled up in a syringe to give him, when another nurse stopped her to look into the protocol some more.  I heard her talking about worrying that if they gave him the epinephrine it might cause a problem with him getting more antibody, due to the study protocol.  I started to get pretty stressed.  It's VERY important that Nate get all five of his antibody rounds to increase the possibility that he will stay cancer free forever.  Ultimately, they decided to do a breathing treatment, that Nate HATED and was a pretty miserable 10 minutes.  It did the trick, though, and the cough started to slow down and eventually stopped.  He's been resting pretty comfortably all evening, with only a few pushes of the morphine button.  If he keeps this up, we should be running laps around the 7th floor by the end of the week.  Total super star!

7.7.11

This is the last picture I took of my boys while our family was still "normal", before we had ever stepped foot on the 7th floor...just hours before our world exploded.  It was Thursday, my favorite day of the week.  We had returned from a totally fun and relaxing annual family vacation to San Diego, five days earlier.  We had come home, celebrated the 4th of July, we were getting ready to welcome our newest family member, my nephew Johnny, into the world and we were excited for the rest of the summer adventures we had planned.  We had some major dust storms that week and everything in the back yard was covered in a fine layer of dust.  I put the boys in their swim suits and set them loose on the porch with a hose to clean everything off, then cleaned them up and put them in their jammies early.  My family was over for our regular Thursday night family dinner.  Wes was showing off for my sister-in-law Jaime and was throwing himself to the ground.  This made Ellie, who was 9 months old, belly laugh, which made Wes do it over and over again.  Nate decided to get in on the action and said, "Jaime, watch THIS!" as he flung his little body towards a small, square vinyl ottoman that I had used to prop my feet up while nursing all three of my babies.

He immediately winced and cried out in pain.  I scooped him up and hugged him, assuring him that he was ok and asking if he needed kisses.  He quieted down but was clearly not comforted.  The pizza we had ordered, arrived and we started to sit down to dinner.  Nate did not want to sit at the table and eat pizza.  He wanted to lay on the couch and suck his nuk and hug his Softie.  As we sat down to try and eat some dinner Nate just wasn't comfortable.  He began writhing on the couch.  Chris and I took turns trying to comfort him and eating.  We tried to get him to pin point where he hurt, he kept pointing to his tummy.  We just couldn't figure out what was wrong.  He really didn't hit the ottoman that hard, at first we only thought he cried because he knocked the wind out of himself.  Clearly something more was going on, but what could it be?  Did he hurt his back?  Being pharmacists, Chris and I have just enough medical knowledge and training to diagnose most common illnesses and injuries.  This just didn't make sense to either of us.  I left a message with the on call pediatrician while Chris took Nate to our room to try and calm him down.  Then, Nate started vomiting...not a lot, but enough to know that something was just not right.  We hadn't heard back from the on call doctor yet, but I knew at that point that there was nothing they were going to be able to tell me that would make me not want to take Nate to the ER.  We quickly got ready and Chris and I were both able to take him while my mom and Linde, who were already over for dinner, stayed with Wes and Ellie.  The pediatrician called as we were walking out the door and agreed that an ER visit was best.  Chris drove while I sat in the back of the van with Nate and tried to comfort him...he threw up again on the way to the ER.

We parked and carried Nate in to the ER at Scottsdale Healthcare Shea.  They prioritize children and got him back to a bed right away.  He seemed much more comfortable as soon as we were settled in at the ER.  We distracted him as he toughed out getting an IV.  They drew blood and we waited to talk to the doctor.  Chris and I discussed a CT scan with the doctor at length.  We didn't want to expose Nate to any unnecessary radiation...but we wanted to know what was going on.  The doctor couldn't quite figure it our either.  He said that it was unlikely that he had ruptured his spleen, unless there was an anatomical abnormality.  Ultimately, Chris and I decided a CT scan was the best way to rule out any problems.  Nate was a very good boy and laid very still for the scan.  Then, we played and read to Nate while we waited for results.  It was almost midnight by now, but Nate wasn't falling asleep with all the excitement.  We truly believed this ER visit was a "better safe then sorry" visit and we should be headed home to our beds soon.

Nate finally dozed off and Chris and I were chatting, laughing and playing with our phones.  The doctor pulled aside the curtain, walked in and sat down.  He said, "You know how we talked about an anatomical abnormality?  I have two pieces of bad news.  Nate is bleeding internally.  The anatomical abnormality that is bleeding is a mass near his kidney".  At this point the room started spinning and I don't really remember much else of what he said.  I felt like my eyes were locked on his.  I couldn't look away.  I literally thought he was going to say, "Just kidding!  Everything is fine, you can go home now".  I had to pull my eyes away from the doctor's to look at Chris...there was no way this could be real.  I looked at Chris with tears in my eyes and with tears in his...he nodded at me.  That's when I knew this was real.  This was actually happening to us...to our sweet and spunky middle child...our Nater.  I had to touch him...stroke his hair.

Then there was a blur of movement and words.  Phoenix Children's Hospital...helicopter...surgery.  I called my mom to let her know that we would not be coming home and could she stay at the house with the kids.  They had to wake Nate up and start a second IV.  The flight crew arrived and verified that I could fly with him.  I could barely breathe but I knew that I had to put my happy voice on and a smile on my face, even if my cheeks were wet with tears.  I had never been so scared in my life, but I knew that I didn't want Nate to be scared at all.  As we wheeled Nate out to the helicopter, I told him over and over again how exciting it was that he got to ride in a helicopter and how jealous Wes would be.  He was happy...he wasn't scared.  Nate immediately fell asleep as soon as we got in the air.  I cried silently and prayed.  Man, I have never prayed so hard in my life.  I asked God to protect my son and to carry me through whatever we were about to face.  I knew I couldn't do it alone.  We flew over the mountains and as I cried and prayed I could see Phoenix Children's Hospital's bright lights shining in the distance...waiting for us.  We landed on the roof and Nate was pushed through the hospital to the ER.  I followed along in a daze.

Chris drove over to meet us.  He stopped at the house briefly and called his parents on the way.  He got there shortly after we arrived.  Papa and Lou Lou weren't far behind.  We spoke with a few doctors and realized that we wouldn't be getting any answers until the morning, when the tumor specialists could look at his CT.  At this point we had absolutely no idea what this mass was or what it would mean for Nate.  As soon as the doctor in the ER said the word "mass" I wanted to know the beginning, middle and end to the story.  I wanted to know what it was, how it got there, how long it had been there, how would we get rid of it and will it stay away forever.  Unfortunately, these answers take time (some of these answers we still don't and may never have)...the unknown is the most painful part.

Papa drove me home so I could let my mom go home and get some rest, try and get some rest myself, and be home in the morning to nurse Ellie.  Chris and Lou Lou stayed in the ER with Nate.  The searing pain that filled my body is nothing that I had ever experienced, there was a crushing pain in my chest...I felt broken.  I dozed off for maybe a few minutes here or there and would be immediately jolted awake with the realization of what was happening to my son.  Nate received a blood transfusion over the night as they kept him stable and scheduled surgery for the next day at 1pm.  We didn't know what the surgery was going to entail.  They were going to try and take out the whole tumor...because it was bleeding...but they didn't know what it was or if they were going to be able to take any or all of it out until they opened him up.

Our family rallied and shuffled.  I was driving to the hospital from Liz's house after picking Ellie up when I got the news.  The surgeon got "all the tumor he could see".  I cried and praised the Lord.  I knew that whatever this was...this was an important step.  Nate came out of the OR without the promised breathing tube and talking.  He was already doing so well.  The next week was a whirlwind of pain and torture as we learned the name of the beast, neuroblastoma, and what the treatment for our son would entail.  I still remember two oncologists and a fellow standing in Nate's hospital room outlining the torture we would be putting our son through over the next year.  I did my best not to cry in front of Nate...to keep the hospital as fun and positive as possible.  I sat next to Nate, listening to the doctors, and tears silently fell down my face and stained my shirt.  I looked up and the fellow was wiping away her own tears.  I knew that this was going to be just as hard as I feared it would be.

In those first days, I kept family and close friends updated via text and facebook.  I didn't write this story in detail or take many pictures.  The reality of what we were going through was so painful that I just couldn't document it.  Somehow, it would make it more real.  I have avoided writing this story down until now...reliving it is almost too much to handle.  The sound of a helicopter landing at PCH still brings me to my knees in tears and prayer.  I can be in that moment in time in an instant.  Tears stream down my face as I write this.  The ER gave Nate a tiger gown to wear and it was changed to the PCH rocket gown when we arrived there.  When we left PCH, 9 days later, we took the tiger gown with us, it even has a little blood stain on it from when they started one of the IVs.  Chris and I can't bring ourselves to throw the tiger gown away...we packed it away with Nate's 2T clothes.  We can't figure out why neither of us wants to throw it away.  We think it may be because without this physical article from that night...the night must just be a bad nightmare.  It's still hard to believe that our sweet, baby boy was diagnosed with cancer.

We have learned so much this year.  We have learned about faith, strength, love, compassion and pain.  Cancer treatment has become a way of life.  Some parts of it...easy almost.  Yet, the pain of that night in July 2011 and the days the followed has not faded.  Another cancer mom recently wrote their "diagnosis story" and said the same thing.  That she could immediately go back to the searing pain of that moment if she thought about it.  I wondered why this is and have concluded that maybe we are not supposed to forget that pain.  Maybe it keeps us just angry enough to not be complacent in this disease.  No matter how much it becomes a way of life...46 families every day in the United States will experience that pain...7 families will experience a pain I can not imagine and pray I will never experience as cancer takes their child's life.  Cancer should not be a way of life for any child.  I plan to spend the rest of my life doing whatever I can to try and prevent any more families from living this nightmare.

So, one year later.  Here is what Nate has endured in the last year:

135 days in the hospital (83 of those being in isolation)
123 shots
over 70 dressing changes
57 clinic visits (many being all day long)
43 transfusions (18 blood and 25 platelet)
24 days of chemotherapy (16 doses cyclophosphamide, 12 etoposide, 10 topotecan, 6 cisplatin, 6 vincristine, 6 doxorubicin, 4 carboplatin, 3 melphalan)
24 doses Accutane
23 general anesthesias
16 days in Houston
12 doses of radiation
11 days in New York
10 plane flights for treatment
10 hospital stays needing IV antibiotics
9 CT scans
8 days of antibody
8 days of IL-2
8 visits from PT/OT/RT
8 hospital stays needing PCA (morphine pain pump)
7 chest xrays
5 IV starts
5 ER visits
4 hospital stays needing TPN (and at home after transplant)
4 MIBG scans
4 ECHO/EKG
4 audiology tests
4 bone marrow biopsies
3 surgeries for Broviac line placement
3 Foley catheters
3 holidays in the hospital (Christmas, Valentine's Day, 4th of July)
3 NG tube placements
2 PICC lines
2 c. diff infections
2 major abdominal surgeries
2 PET scans
1 bone scan
1 stem cell collection
1 stem cell transplant
1 e. coli line infection
1 helicopter ride
1 hair loss
1 chest tube
1 central line
1 PICU stay

That is a whole lot for a little boy to go through...a lot for a Mommy and Daddy to watch their baby go through.  Nate has taught me more in this last year about strength, courage, and resiliency than I had learned in my previous 33 years.  The fact that he can go through all that he has gone through and ALWAYS comes out smiling on the other end shows me that I can get through anything.  Despite the roller coaster cancer took us on again this week, we are so grateful to be where we are today.  We have been to hell and back...but Nate is here, healthy and getting stronger every day.  He still has horrible treatments to endure...but there is a light at the end of the tunnel.  Today we are relaxing and having fun in the cool air of Flagstaff with great friends and we couldn't be more grateful.  Today we are enjoying the moment and thanking the Lord for carrying us through this year.  We are also thanking all of you for everything...so many things.  This day definitely has a painful sting to it and probably always will, but we are using the pain as a reminder to hold our loved ones close and to look for the beauty in everything.  Life is really, just too short.