Back We Go

It's been so, so nice being home. I'm just not ready to go back. We've had a fairly low key weekend. Spending time together at home. Letting Nate choose any meals he wanted, which included "Cheesesteak Charley's", pizza, frozen yogurt, smoothies, Corleone's, Chino Bandito and letting him raid the kitchen at home as much as he wanted. We had an impromptu Halloween party on Saturday morning for the kids and our friends, because we don't know if Nate will be feeling up to celebrating next weekend. We rented a movie, snuggled on the couch and ate popcorn. We went to church. Chris and I went on a date. We ran and played outside, swinging on the swings, playing on our playground and in the playhouse. We slept in our own beds and ate together and didn't shuffle anyone anywhere. It was perfect. It was too short.

It takes some time for Nate to acclimate to being back at home. It's very sad. He doesn't want to fall asleep alone in his bed or be separated from me much. He doesn't really want to go outside or walk around much...for the first couple days home. Just today, he was finally running around playing, getting into trouble and itching to get outside like normal...and now it's time to go back. The blessing is that he doesn't know how hard it is on him. He never puts up a fuss. I told him he was going back to the hospital tomorrow and he said, "Ok, my tummy hurts. Time to go back to hospital". Then I started packing all of the hospital bags and he got all excited and said, "Let's go to hospital!". I explained that we would go in the morning and he said, "Mommy, my tummy hurts. We need to go to hospital now." I told him they didn't have a room for him until the morning and if we drove there right now we would have to sleep in the car. He was very concerned because there is not a bed in our car and decided that the hospital could wait until the morning.

A couple tid bits from this weekend.  Wes had watched the movie Jumanji with Grandma some time last week and was excited about renting Zethura, which is like Jumanji, but in space.  We all snuggled on the couch and watched Zethura on Friday night.  Nate was a little nervous at a few parts and asked to go to bed, but ultimately he really liked it and LOVED any parts that involved a rocket (one of his new favorite things).  In Zethura there is a part where the older brother gets to make a wish...twice.  After the movie was over, Grandma asked Wes what he would wish for.  He said for Nate to get better.  She asked what he would wish for his second wish.  He said for Mommy and Daddy to not be so busy.  Man...if that doesn't break your heart, I don't know what will.  I promise, my sweet boy, both your wishes will come true.  It may take some time, but they WILL come true. 

Then, this morning Nate and Ellie and I were playing in our backyard and Nate started investigating my poor, sad garden.  My garden that I lovingly built and planted with the help of my boys.  We would all go out every day to love it, check on it's progress and eat it's rewards.  We were all so proud of it.  We were so excited to keep it going the best we could through the summer and see what we could grow this fall...then cancer came in to our life and also took over our garden.  Nate was going around checking on all the mostly dead plants and saying "Mommy, where are our carrots?",  "Oh no, look at that." and "Awww, where our onion go?".  Then he spotted them.  Right there on the completely brown and dead tomato vine were two bright red, fresh, perfect tiny tomatoes.  I wish I took a picture of them because it really is remarkable that these perfect beauties were growing on a completely dead plant that took a major beating in the Arizona summer with absolutely no care.  I didn't get a picture though because Nate snatched those tomatoes off that vine so fast and we each gobbled one up...so sweet and juicy and delicious.  Ok God...I get it.  Our life in this cancer world is rough, dry, brown and scraggly, but there is somehow beauty growing right there in the middle of it.  Just when you think the plant is dead and there is no way for water and nutrients to get all the way up the branches to produce the sweet, beautiful fruit...there's some life hidden in there still. 

So, I am not happy about checking my little boy in to the hospital tomorrow to pump him full of the same medicine that made him so, so sick 2 rounds ago, but there is beauty to be found.  I will search for it...and I will pray and pray that somehow this round goes a little easier on him.  We need him to be strong and healthy for surgery.  Once we get the go ahead for chemo tomorrow, I will call and try to figure out Nate's new surgery schedule.  I'll keep everyone updated as I get more info.  We could be leaving as early as one week from now...man, that's frightening.  We'll figure it out somehow.

Care Calendar

Aunt Lizzy asked me to post this on the blog for those of you who may want to help with a meal and are not on Facebook.  Thank you!


Nate is enjoying a nice weekend at home... before he starts Round 5 of chemo on Tues. If you'd like to help out the family with dinners... dates have been added to the calendar. Thanks everyone!

Dinoffria Care Calendar

http://www.carecalendar.org/

Calendar ID: 80704
Security Code: 4994

Life's A Beach

NATE IS HOME!!!!  Ah...life is good.  Everything...and I mean everything is much, much easier and better when we are all home together.  How did I ever think life was hard before this?  Now I know what hard is.  We are not happy that chemo has been delayed...but there's always the blessing...we are so, so grateful to have a happy, healthy weekend at home.  We are going to take FULL advantage of it...we haven't had one in a long, long time...almost 2 months.  Nate is due at the clinic bright and early Tuesday morning to see if his body is ready to start chemo again.  I think it will be...so, we will be prepared to start that day.  As soon as he gets the go ahead to start chemo, I will start making phone calls to New York to see if the chemo delay changes our travel plans.

Nate has asked several times, since all this started, to go to back to "our big house at the beach"...we rented a condo right on the boardwalk this year.  Does he just love the beach, like his Mommy?  Or does San Diego represent for him an escape from all this...a time when there was no cancer in our world?  We had been home from our trip less than 5 days when our world exploded.  I really think it's a little of both.  I sat with him on my lap at the computer and we looked at pictures of our trip together.  These pictures are truly painful for me to look at.  I want to go back to "our big house at the beach" too, Nate.  I want to go back there and freeze our life forever.  Life was easy and carefree.  Life will never be like that again.  Even when we make it through this, we will always KNOW childhood cancer, and once you KNOW, there is no such thing as carefree.  We will always have scans and an oncologist in our lives.  Our life will be a different type of beautiful.  We will have a SURVIVOR and we will have WARRIORS.  We will continue to fight for the little ones who fight for their lives every day.  Yes Nate, we will go back to the beach...soon.  I can't wait to take you back to the beach.

A Best Friend's Perspective

My sweet friend, Bethannah, moved to Wisconsin shortly after Nate's diagnosis. She was in town last week to visit and help me get Ellie's birthday party together. She stayed with us and got an unfiltered look in to the every day life of a "cancer family". As close as our friends and families are to this, I don't think they still completely understand what our every day life is like...they get to walk away occasionally...we do not. Bethannah got a little taste of our life this week and returned home with a heavy heart. She felt the need to write about her experience to share with others. So, I thought I'd share it with you...


It was a heavy, heavy week and my heart is heavy even now as I write this.  My best friend’s 2 year old son who also happens to be my husband’s baby cousin is fighting for his life.  You may have heard of him by now, his name is Super Nate Dinoffria.  He has Stage 3 High Risk Neuroblastoma, a very rare aggressive childhood cancer.  (I can’t even write this without crying). 

Beth and I had been planning this trip for a few weeks now.  The plan was for me to come out to Phoenix the week before her daughter Ellie’s 1st Birthday to help get the party ready since she has very little free time and we were hoping to get in some girl time and get her mind off of things for awhile.  At that time Nate was looking good.  He had just finished a round of Chemo and seemed to be handling this round better than the others.  Even though he was supposed to be home the week I was there, we knew there was no guarantee.  Sure enough a couple days before my arrival he spiked a fever and had to be taken to the ER and then was subsequently admitted.  This was devastating for Beth and Chris.  At that time it had been 90days since their little boy was diagnosed and 60 of those days had been spent in the hospital.  Not only did this mean he was in the hospital but it meant he might miss his baby sister’s 1st birthday party.  In tears Beth said to me, “Well it looks like I won’t see much of you this week.”  I knew how badly she needed this break but I honestly didn’t grasp the full concept of what she was saying until I arrived.  Nothing could come close to preparing me emotionally for the week ahead.

  I talk to Beth everyday and felt I had a pretty good understanding of what life (or I should say her schedule) looked like.  Let me say, I feel like last week I got a rare opportunity to be a fly on the wall, so to speak.  I could and will never understand what it is to walk in her shoes, but at this moment God had me see things I had never seen before and maybe it was so that I could write this and share their story so that others had a better understanding.  I know for me personally, this last week has forever changed my life and impacted me on such a deep and profound level that I will never be the same.

  When I walked into the Dinoffria home there was this energy about it.  I was expecting there to be a deep layer of sadness but there wasn’t.  You walked in and could feel the love in this family. There are pictures all over the walls of friends and family and of course of their 3 children.  Wes 5 years, Nate 2 ½ and Ellie Belly who just turned 1 years old.  I joked with her that her house was like Disney Land for kids.  You can see how much love and energy goes into their children just by being in their home.  Beth was able to have a quick bite to eat with me before she had to head back to the hospital to be with Nate and relieve her father in law.  I wouldn’t see her until late that night.  I was left alone in this big house with my little boy and my thoughts.   I walked around looking at the pictures her children had drawn for them that hung on a string across a wall, children’s books scattered around with title’s like, “This is How Much I Love You.”  Toys in bins bubbling over.  A big play-set in the backyard where I pictured Nate and Wes running and playing with their Nurf guns…. but then was reminded of Nate’s weak state and how this family has only seen glimpses of his former rambunctious 2 year old self over the last 3 months.  A little garden that I knew she had planted seeds with her boys, that was now overgrown and dying off.  The pool that had turned green the 1st few weeks of chemo because no one was home to care for it, still had pool toys around it even though I knew they hadn’t been swimming since July. (They now have a “great” Samaritan that comes to their house once a week to treat and care for their pool for free). I remembered Beth telling me how she put Nate on the float to make him feel like he was swimming with the family when in reality he couldn’t because of the open chemo port in his chest.  The kitchen was left with a full dishwasher, dishes scattered from the mornings breakfast that they weren’t able to get to because they were rushing out of the house to get Wes and Ellie off to “that days” caregivers at two different homes in different areas of town.  (Wes had had the stomach flu for the last few nights and wasn’t feeling well enough to go to school and Ellie was still recovering from mouth, foot and hand disease that was very contagious and spread to both her brothers and a 2mo old nephew.  Did I mention that Dad, Chris was just in the ER that last week with kidney stones and then sprained his ankle and was still reeling from the pain of that).  Yes, this home was undoubtedly filled with an abundant amount of love but the air was heavy. 

  I opened the door to this precious little boys room.  All of his favorite stuffed animals were all piled high on the floor in the corner.  He had some toys left out from when he was home playing with them.  The room was beautifully decorated to match little Nate’s personality and interests.  His bed was unmade from the last time he slept in it, more than 4 days at this point.  His changing table had all the things I have for my precious baby boy on top of it like baby powder, lotion, diapers and wipes…. but somehow it was different.  There was a basin there for when he had his bad nights of throwing up.  There was a medical pillow that was plastic so that it would be easier to clean in case he didn’t make it to the basin in time.  Medical supplies were peppered throughout and it made me realize I wasn’t in “any” little boys room, I was in Nate’s room and this is where I would stay for the next 7 days. 

  Suddenly the enormity of what this family is up against and what they have been through over the last 3 months hit me like a ton of bricks.  I fell to my knees in front of Nate’s bed and began to sob from the pit of my belly.  When I was able catch my breath I started to pray, plead and beg God out loud to make the pain stop! 

  I prepared dinner for Beth, Wes and Ellie at the “normal” family dinner time but was reminded that this was no longer a normal family when they arrived at 9pm.  Chris had worked all day and went straight to the hospital to stay the night with Nate.  The family didn’t cross paths that day and that was now the new “norm”.  You would think Beth would be exhausted, drained and exasperated from her long day of running around and her emotionally difficult day at the hospital with Nate, but she wasn’t.  HA HA HA… That’s a funny statement, let me take that back!  She most certainly was exhausted, drained, and exasperated but this was the 1st time since 8am that she had seen her son Wes and her baby Ellie and one of the only times she would see them that week.  Many of us would have called it a day and just kissed the kids goodnight and put them to bed right away, but she met them with such enthusiasm and love.  She ate with them, did homework with Wes, played a game of Go Fish, bathed them and read them stories.  She made sure their teeth were brushed and they got their hug and kiss before tucking them in, all with the sweetest, loving smile on her face as if she didn’t have a care in the world.  When she came to meet me out in the living room I could see her brokenness and the deep sadness in her eyes.  She missed her babies, she missed her husband and her family was no longer together.  (Tears, tears, tears are rolling down my face).  It was now after 11pm and the 1st time she got a moment to “unwind”.  This ball of yarn was much too wound and tangled to be unwound in one night!   I told her she should go to sleep.  She told me, she doesn’t sleep anymore.  She keeps her-self as busy as possible up to the last second just to keep her mind off of things.  On this day and everyday thereafter this week Nate was in excruciating pain.  This round of chemo had caused mouth sores that went down his esophagus, clear down to his rectum.  He would lay there in his bed with his mouth open, drooling because it was too painful to swallow his own saliva.  He wasn’t able to eat all week and had to be fed through a tube and by the middle of the week he stopped talking all together because of the pain.  Ask your-self day in and day out how you as a mother could watch your child suffer like that?  I can’t even for a second imagine how I could manage the pain of that.  On the nights that she wasn’t able to stay with Nate and it was Chris’s turn to sleep in the uncomfortable pull out hospital chair, Nate would cry for his mommy.  How do you choose that as a mother?  Your heart is ripped in half.  You want nothing more than to be with your son who is fighting for his life and 90% of the time that’s exactly where you are, but then you have your other precious children that need you too and are too young to understand why mommy and daddy aren’t home together anymore.  Why they don’t sleep in the same bed, why they don’t have dinner together anymore, why they can’t just go to the park when they feel like it or why mommy can’t drive me to school or pick me up anymore or volunteer at school like the other mommies.   Suddenly Wes’s best friend, his little brother is never around anymore to play with and when he is, he’s too weak to play.  Children can’t put those emotions into words like adults can, so his pain comes out it other ways and that is so painful to watch.  I wished I could talk my dear friend into going to sleep because she had a 12 hour day the next day as a Pharmacist at the local grocery store.   She couldn’t because this was the only times she had to prepare for her baby girls 1st birthday and this would be the 1st major family event since the diagnosis and she was going to make damn well sure this cancer didn’t get to steal this moment from them too.

  The next few nights I spent with Chris as Beth stayed at the hospital with Nate.  It was a time that I will always treasure because I got to know Chris in a way I never had before.  (Chris is Greg’s cousin and they were close growing up)  He is a private man with deep convictions that loves his wife and family so much.  He is very protective of his family and has such a soft heart for his wife.  Like most men the pain runs so deeply but they don’t express it as openly as woman do.  I could feel his pain and see the exhaustion in his eyes.  This family needs a break!  He was just like Beth with the kids and it was so heartwarming to watch.  Almost every night someone would bring dinner for them or had ordered them take out that was delivered (which warmed my heart and made me realize there are so many good people still left out there).  Chris would eat with the kids, talk about Wes’s day, share his excitement over the happenings in kindergarten life, bathe them and read to them every single night!  These parents brought joy to their children even in their darkest moments and that was inspiring to me!!!

  The other parts that were inspiring to me were the unsung heroes in this family.  It was like watching a well oiled machine.  I would ask Chris or Beth, “Who is taking Ellie today?” Or “Who is picking up Wes from school?”  “Who will stay with Nate while you run to the store?”  Sometimes it was 11pm and they didn’t know and I would ask and the answer was always the same, ”I don’t know right now, but we know it will be taken care of and work out somehow.  It always does. “   I personally have never witnessed anything like this in my life.  Both sides of the family astound me from Chris’s parent’s who spend many days and hours at the hospital with Nate so that Chris and Beth can get just the everyday mundane things done like going to the store, or when Beth has to work every Wednesday and some weekends they are there without questions. There is no complaining of their lives being put on hold or an attitude of look at all I’ve done for you, you don’t hear that they ever say things like, “well I had plans.” I am sure David who is Chris’s dad never imagined spending his retirement like this.  They just do what they feel they need to do for their children, they do what’s right, they are just there loving on that child and making sure his mouth is cleaned, he gets his pain meds on time and wipe his mouth after he throws up for the millionth time that day and on his good days keep him entertained.  There are nights when they sleep at the hospital just to give Chris and Beth time to be together as a family, a chance to sleep in the same bed.  I watched as Chris’s dad came to pick up Wesley and Chris to take them to Phienius and Furb.  All on his own this man bought tickets to take his grandson that he knew was hurting to a show to get his mind off things.  You should have seen how excited these 2 grown men and little boy were to be going to this kid show… It blew my mind!  Lol Beth’s mom and Aunt are just as deeply invested both physically and emotionally.  Everyday Beth’s mom picks Wes up from school and cares for him until Beth or Chris get home, which is as I said before is often very late at night.  She is a doting grandmother that pours love into her grandchildren.  At the time I was there she was sewing a vintage style dress for her granddaughter to wear for her 1st birthday.  She and her sister were over late one night helping with party decorations.  They too spend many hours at the hospital with Nate without flinching.  Ellie is 1, so those of you who have a 1 year old or who have know they are hard work.  In the beginning I remember Beth talking about maybe having to find childcare for her or having to quit her job to stay home with Ellie… those thoughts lasted a matter of seconds because once again these angels came into rescue them.  Chris’s Sister Liz has 2 toddlers of her own and has become the primary caretaker of Ellie along with their longtime babysitter Tracy when Nate is in the hospital.  Beth brags weekly to me about how well taken care of Ellie is and how blessed she feels to have these 2 amazing woman in her life.  Along with the children being taken care of you had food being dropped off, someone picking up their laundry to clean, pool man stopping by, a friend that threw together a car wash that raised a little under $2,000 for Nate’s medical bills and long term care.  A high school friend she hadn’t seen since then make Ellie one of the most beautiful birthday cake’s I have ever seen along with a smash cake and cookies for the party.  The out pouring of love from family, friends and the community alone is emotionally overwhelming.  It’s beautiful.  I felt like all of these people are such a beautiful example of God’s love for us.  They are each a light in a very dark time of Chris, Beth, Wes, Nate and Ellie’s lives.  Chris and Beth are very blessed to have the support they do and that became a very real statement when both Chris and Beth told me that there are children from babies, to toddlers and up that sit in the hospital all day with no family around them, no visitors.  At first I was so angry when I heard this!  How is that even legal?  The truth is many of these famiies have no family support, they have to work and take care of their other children.  Some of them are single mothers or grandparents.  It prompted me to want to look into volunteering to go visit these kids at the hospital.  Its heartbreaking and so inhumane!  You just don't realize how many families are suffering until it hits this close to home.  

   Saturday was the most heart wrenching day.  It was the day before Ellie’s 1st birthday party and we knew at this point that there was no way Nate was coming home.  His numbers were at 0, he had no immune system and he still was unable to eat.  At this point he had been in the hospital for 8days.  Chris was gone with Wes and it was just me, Ellie, Elijah and Beth.  Maybe Beth had had other days where reality hit, but it was safe to say this was the 1st day I had seen her at her lowest point during this process besides the day she found out.  It was the 1st major event they were spending  apart. They had to figure out who was sacrificing going to the party to stay with Nate and Beth had to muster up the strength to put this thing on.  I found her curled up in a ball in her bed with the covers pulled up over her and she was crying.  She complained of her chest hurting so badly she could hardly breath and she said she had felt that way since she found out her little boy had cancer.  I told her she was having an anxiety attack….   We talked through her feelings and I rubbed her shoulders as she cried it out.  I prayed with her.  She said she wasn’t sure she would be able to make it through this, it was all too much!  I agreed, it was all too much!!  I wish I had all the right answers or knew all the right things to say and do, but I don’t.  I just know that God see’s every tear, he hears every cry for help and he wraps his loving arms around you as you weep.  He will and is carrying this family through this and there is light at the end of this dark horrible tunnel.  I pulled back the covers, smacked her ass and told her to get her ass out of bed and let’s get this party done!  I got a glimmer of a smile and we went on our way.  (Another angel came through named Lilly who is Liz's Best Friend... she sat with Nate so that Chris and Beth could be together as a family to celebrate their little girls special day.  Blessings abound!)

  The day after Nate was diagnosed Beth, Chris and the kids were supposed to be heading to Sedona to have a family camping trip with us.  Our friendship was normal and carefree.  We met for lunch, planned play dates, family vacations and giggled about what our kids did that day.  This diagnosis feels like what the pictures looked like after the tsunami hit.  It had devastating effects and although their lives can be rebuilt and Nate’s chances of survival are looking good at this point, they will never be the same.  Nate is in the fight for his life for at least the next 2 years.  The side effects of the chemo, radiation, blood transfusions, stem cells transplants and so on won’t be known until or if they hit.  We are praying for a covering over his little body.  I couldn’t have anticipated our friendship going into this new dimension.  I am as real as Beth is, and perhaps that’s why we click so well.  I will say this is difficult.  Its not easy to see your friend go through something so painful.  I have asked God if I am strong enough to be there for her.  I know he wouldn’t have matched us up when He did if He didn’t feel I was.  This is painful all the way around, and honestly I need prayer to give me the wisdom to be the friend she needs right now. 

  I am sharing this story to raise awareness.  I am sharing this story for Nate.  He and the rest of this family; grandparents, aunts, uncles … they all need your prayers tonight.  I laid in Nate's bed every night and prayed with tears in my eyes to please heal this precious boy and give this family strength, peace and longsuffering.  Tomorrow will be day 12 in the hospital.  Please pray with me, please share their story.  Beth writes a blog that has become quite famous about her journey through cancer with Nate.  You can find her blog at www.supernatedinoffria.blogspot.com , you can also find Nate’s Facebook page by searching SuperNate Dinoffria or www.facebook.com/supernatedinoffria .  If you feel led to donate towards his long term care you can donate by going to ANY Wells Fargo Bank and ask for The Nate Dinoffria  Donation Fund or you can donate through paypal on the blog or his facebook page.  They also sell Super Nate bracelet's for $5 each that you can find on her blog and FB.
 
  Thank you for your outpouring of love for this family.  Thank you Lord for seeing them through this and being such a loving God.  I am reminded of the song “Blessings” by Laura Story.  You never know if what you’re going through is truly a blessing in disguise.  Nate has had this tumor since he was growing in Beth’s womb.  There was no sign, rhyme or reason for this…. It is hard to detect early and many times takes the lives of these beautiful children.  Read her blog to learn more.  Thank you again.
~From a best friends prospective; Bethannah Guzman

Day 10

Our goofy boy is back!

Yes, Nate is still in the hospital.  I have not really felt like writing and there really hasn't been much to report.  Yesterday and today, he finally is starting to make some progress.  He had much more energy yesterday and was speaking much more clearly.  He still wasn't swallowing much and was still having a bunch of spit build up, but not as much as before.  I was able to talk him in to eating a couple bites of food and a few sips of water.  Not much, but 100% more than the previous 7 or 8 days.  Today was even better.  He kept saying "no" to any food I offered him, so I decided to try his favorite candy, PEZ.  Sure enough, he downed 3 packs of PEZ in no time flat.  Clearly, the sores in his throat are better, or he wouldn't be able to swallow PEZ.  He is still on TPN and I'm still convinced that he won't eat until they turn it off.  I talked them in to turning it off in the morning.  I also haven't had to push his morphine button all day yesterday or today, hopefully we can have them turn the drip off tomorrow.  Over the weekend, his ANC went from 0 to 100 and back to 0.  Argh!  Monday it was 47 and today 115.  We are praying and praying that it is above 250 tomorrow.  Even if his ANC does get to 250 tomorrow, we aren't sure if they will let him go home, but Chris and I are surely going to push for it.  We've all been tortured long enough.

Nate is feeling much better and has a ton of energy, which is hard because they won't let him leave the room.  Once he comes in to the hospital with a fever, he can't leave his room until he leaves the hospital...even though we have been there for 10 days and he has been fever free for over 6 days.  I've been coming up with lots of games to keep us occupied, but it's getting difficult.  He even missed meeting Larry Fitzgerald and some ASU football players because of his isolation.  Good thing he doesn't care that much about football yet...and no one in this house cares about ASU football. :)

Nate is supposed to start round 5 of chemo on Friday.  I talked with one oncologist who said he didn't think that Nate would be ready...but he didn't really have a lot of answers for me, so we're just waiting to see what Nate's body does.  The Dr. (who is not Nate's main oncologist, who makes the decisions) said we could wait until the following Friday.  That would be so, so great to have a week off...except...there's this little detail of a surgery in New York.  I know that everyone involved is used to these delays, but it really can't be delayed too much because it will start pushing Thanksgiving and the surgeon is not there...major problem.  So, Chris and I have decided we will push them to keep checking Nate and start chemo as soon as his little body will allow.  Not really what we want to do, but it's what must be done to secure this surgery.  All of our travel plans are up in the air and I can't even make any phone calls until we see that Nate's numbers have recovered and we can start round 5.  I'm taking deep breaths, but to say that this causes me anxiety is an understatement.

This has been rough, really rough.  It's just so awful to see him in pain and it really hit us like a ton of bricks how quickly he went from being totally awesome to totally awful...and he has been in the hospital SOOOO long.  The hardest part about this is that we didn't really get much of a break this round and we know we are not getting any kind of a break after the next round either.  We have to take him right from chemo to surgery, and that is so hard.  This weekend was pretty tough.  We had a really cute 1st birthday party for Ellie...but Nate was not there.  Our family was not together and it kills me.  I am really happy that we at least celebrated together on Ellie's actual birthday, the day before everything went downhill.  I also had a super emotional day on Saturday, partly due to the outpouring of love and support for Nate and our family.  My sweet friend, Jen, organized the most amazing car wash to raise money for Nate's care.  She told her boss at Walgreens about Nate and he immediately jumped in to action to help.  So many people I don't know worked their butts off organizing the event, washing cars, making hot dogs, collecting donations and doing so much more that we probably don't even know about.  I was not there because I was trying to get things together for Ellie's party after having been stuck in the hospital all week, and also because I really didn't think I could handle it emotionally.  I was already in tears all day from the outpouring of support I saw on Facebook.  The turn out was incredible and the amount raised far exceeded any of our hopes!  Thank you so much to everyone.  There is no way I could ever thank you enough or show you how much it truly means to us.  We promise to pay it forward one day soon.  Also that day, a friend from high school, Leigh Ann, came to drop off the cake she had offered to make for Ellie's birthday party.  I have always made the kid's birthday cakes and I had a hard time accepting the offer from Leigh Ann at first.  I am so glad I decided to give myself a break because there is no way I could have made a cake with Nate in the hospital for so long.  Leigh Ann made the most perfect, beautiful cake for my sweet girl's 1st birthday piggy party...and it was so delicious that our guests gobbled up the whole thing in no time flat. She also made the absolute cutest smash cake...and little pink pig cookies.  She went so totally above and beyond, I almost couldn't handle it.  The love and support from all around is just so much to emotionally handle sometimes.  We have thoughts of..."do we deserve this", "how are we ever going to live up to this", "how could we possibly thank all these people" and "we wish we were helping with these efforts, not having to ask for the help".  Not to mention that sometimes having your heart so full of the love around you, makes it feel like it will burst.  These are just two examples of the many, many, many ways people are helping us through this.  I want you to know that if I forget to thank you personally or through a note or on this blog, it does not mean that we are not eternally grateful.  I really don't actually have enough hours in the day to thank everyone...wow...isn't that incredible!

I'd like to clear some things up about this blog.  I know that I did indeed ruffle some feathers with my naughty language a few days ago.  When I said I was sorry if that word offended you...I meant it.  I really don't want to offend anyone...but this blog is really, my story.  I know that many of you come here to get updates about Nate and he is obviously the reason for all of this...but he can't write a blog and Daddy has no interest, so the task of updating everyone is left to me.  When I started this, I had no intention of letting everyone in to the mind and heart of a mother to a child with cancer...but here you are.  It's not a pretty place to be and there are many, many four letter words here...only because there is no word in the English language that accurately describes how I really feel about cancer.  Ultimately, this has become and outlet for me and I need it, but I want everyone to know that I am not as "bad off" as maybe I seem in my blog entries.  I spend ALL day being happy and positive for Nate, Wes and Ellie.  I am absolutely positive that Nate will beat this cancer.  I search for our blessings daily and usually they grab me before I have a chance to look.  I take each happy, free of cancer worries, moment that my family is given and I run with it and do something incredible and fun.  The reality is though...that this is not a positive experience.  Yes, I look for the positives in everything, but really I just want to be taking Nate and Ellie on play dates to the park and to be volunteering at Wesley's school.  Not, taking Ellie to the babysitter and Nate to the hospital and never able to even pick Wesley up from school. We are constantly making the best of it...but really it sucks.  Cancer is stealing this year from all of us and I'm not happy about that.  I need a place to scream and yell and kick...and this is my place.  When Nate throws a royal fit about having to take another medicine or get another shot...I want to throw myself on the ground and throw a royal fit too...but I don't.  I smile, encourage, use my happy voice and tell him that he's strong and brave and it will be over in a second.  Then I come home, get on the computer and throw my fit to you all.

Fuck Cancer

I'm sorry to anyone who is offended by my use of that certain four letter word, but my Mommy taught me long ago that sometimes there is just no better word. I love my Mom. Today is just one of those days that deserves a great big old FUCK CANCER!

For the first time in this process, my baby boy is in some real pain and I can't stand it. I just want to jump in that bed and switch places with him. The sores in his mouth and down his esophagus have gotten bad and super painful. He hasn't eaten in days even though he says he's hungry and keeps asking for food. Yesterday, he would continually try eating something, then scream out in pain when it went down his throat and decide that eating was a bad idea. Finally, I got the doctors to give him some pain medication, which seemed to help a bit but it would wear off eventually. He got to the point where he was just letting the spit drip out of his mouth rather than swallow it, because it was too painful to swallow anything. Then, the spit would eventually build up in his throat and he would gag on it and "throw up" a bunch of bloody spit...and cry and cry from the pain of it. Are you with me now that FUCK might just be an appropriate word right about now?

I worked and worried all day today while Nate was well taken care of by Papa, Grandma, Lou Lou and Linde. The doctors worked on a plan to make Nate more comfortable and support him until his immune system comes back to heal these awful sores. Here are all the things my sweet, little 35 pound boy is currently having pumped in to his body. Fluids, TPN (IV nutrition), Cefoxime and gentamicin (2 different antibiotics they use "just in case" because he came in with a fever), metronidazole (another antibiotic because a bacteria showed up in his stool), fluconazole (an antifungal he gets daily that is supposed to help prevent mouth sores...ha!), Protonix (decreases stomach acid to help his esophageal sores heal), Neupogen (injection he gets daily to help boost his white cell count), and now they have him on a continuous morphine drip with a button we can push to give him a morphine boost if he's in pain. He's also had 2 platelet and one blood transfusion in the last 3 days which he gets Tylenol and benadryl prior to getting, to prevent a reaction. They were also giving him zofran to prevent nausea but we have determined that any throwing up he was doing was not from nausea but from an accumulation of spit. So, I'm not sure if he's still getting the zofran.

He had stayed fever free for over 24 hours which is awesome and is also a condition of his release, but then spiked another fever this evening. They tried to give him Tylenol by mouth 2 times but he gagged it up both times. There is no such thing as IV Tylenol and the only other form it comes in is a suppository and kids on chemo can not have suppositories of any kind because the "mouth sores" extend all the way down their GI tract and to their rectum. So, they can't have anything placed in their rectum at all. With oral Tylenol being his only option to bring down his fever and him gagging it up, my aunt was put to the task of cooling him down with cool, wet rags, which eventually worked. The fever is a major bummer because it could mean that there is another infection at work, but I'm praying that it was just due to him receiving platelets because it is pretty common to spike a fever after receiving platelets. We will find out what the culture shows up with tomorrow. If it grows something, they will switch his antibiotics and he will certainly be here much, much longer.

So, are you with me now? All together now...let's hear a great big, loud "FUCK CANCER".

Wanna hear some good news? Lou Lou keeps reminding me that as far as the cancer goes, Nate is beating it. After hearing the worst news of all, "Your son has high risk Neuroblastoma", all other news about his "fucking cancer" has been good news. "We are staying ahead of it", as Lou Lou likes to say. We just have to get through the awful, awful side effects of these treatments. For every one of the side effects my sweet boy is having to endure, there better be at least 100 billion cancer cells killed! You hear that cancer! We're killing you dead forever!

Serenity Now

We had a totally awesome family day on Saturday to celebrate Ellie's first birthday. She was feeling much better and was no longer contagious, so we went to the zoo in the morning. Nate insisted on wearing his boots and he literally ran ALL over the zoo. I even started to tear up at one point thinking about him just 3 weeks ago laying on our couch unable to muster enough energy to lift his head or talk, and here he was with such an abundance of energy. I told Chris that I thought they had forgot to put "The Red Death" in is IV and accidentally put Red Bull instead. That night, we went out for a quick dinner and got some ice cream to take home and enjoy on our porch while we soaked up the lovely weather. There were even two nice ladies outside the restaurant who took the time to ask about Nate and a mom at Baskin Robbins who noticed my bracelets and mentioned that she reads Maya's blog and has read this blog as well. That just made the night even better! It makes me feel good to know the awareness is spreading, even in a small way.

I got up Sunday morning and was getting ready for work when I noticed that Nate felt a little warm. I mentioned to Chris to keep an eye on him, said a little prayer, and went off to work. Soon, Chris called to say that Nate had thrown up and still felt warm. We knew this was trouble but just hoped his temp would stay down and the vomiting would stop. We are not allowed to give Nate any Tylenol  to lower a fever and we have to bring him in if his temp is 100.5, two times in an hour, or 101, one time. A fever could be an indication of a serious infection...or it could be nothing...we can't take any chances.

By 9pm, Nate's temperature had reached 101 and it was time to send him and Daddy to the ER. Also, Wes came down with a fever of 102! Really?! We just need a break! Chris was in the ER with Nate until 3am, when they finally got him a room. It's the same story at the first round. His numbers tanked, so he has no immune system. We have to sit in the hospital and wait for his fever to go away, the cultures to come back negative and his immune system to come back up. So far, the cultures are negative...but he still has a fever...and so does Wes. Wes ended up throwing up a couple times in the night and was running a fever all day. I guess both boys have the same thing. One gets to stay home from school and watch TV...the other has to be hooked up to tons of medicine in the hospital.

Nate is doing ok. He's not super comfortable, especially when the fever spikes, and I think he has mouth sores. He won't let me look in his mouth or really tell me, but he keeps grabbing his cheeks with an uncomfortable look on is face. If he does have mouth sores, I've been told that they will clear up when his immune system recovers. Come on immune system! We're counting on you!

Of course, I'm second guessing taking Nate to the zoo on Saturday. I really doubt that whatever these boys got would have shown up that quickly, but you never know. I did ask permission to take him to the zoo and they said it would be "the perfect place to take him". I think that I really have to go with my gut on this stuff and not second guess it. We could have skipped the zoo and this still may have happened, but we wouldn't have the fun memories from that day. This year is going to suck...big time...but I don't want to look back on this year and only remember pain. I want to grab on to the fun and laughter where we can...and I'm not going to regret it.

Germs!

I took Ellie to the doctor and found out that it is indeed coxsackie virus (hand, foot and mouth disease). It's a highly contagious, but mild viral infection. Poor baby also has ulcers all down her throat. I called the clinic to see if we needed to quarantine either Nate or Ellie. They said definitely not, just use good hand washing and cross our fingers that he doesn't get it...we're praying. It wouldn't be awful if he did get it, but he'd probably end up back in the hospital for a fever...and we certainly want no part of that!

I am not a person who is afraid of germs, I'm having to learn some germaphobic ways, but it's still not my nature. Sure, I've been known to Purell the heck out of my kids hands after a good, messy day at the park...but I've also been known to forget. It's never been a problem. Wes, Nate and Ellie have had their share of colds...but they've always been healthy. I think Wes has had antibiotics once and Nate and Ellie had never had them...before cancer. Now, every time Wes or Ellie has a sniffle I have to run them to the doctor to find out exactly what it is and if it's dangerous to Nate. I am NOT looking forward to this cough, cold and flu season...especially with Wes being in school.

I need to ask a favor...because I will forget to ask you when I see you...because I'm a scatter brain. Please...if you are going to be anywhere around Nate this flu season, get your flu shot. If you do not want to get it, for whatever reason, we love you...and we'll see you in May (when flu season is over). This goes for kids 6 months and older too. I'm sorry, but they have to get one...they can get it at their pediatrician. Adults can get one at your doctor or at just about any pharmacy...though, I recommend Albertsons :). A pertussis (whooping cough) booster shot is also important, especially if you're going to be around Nate alot (visiting our house or the hospital for long periods of time). Pertussis is not as common as the flu but there have been major outbreaks recently because it was previously thought that your childhood vaccination for pertussis lasted a lifetime and it has been discovered that it does not. Please get this booster if you have not had it since you were a child...it could save Nate's life. Children, under age 11, who are up on their immunizations should be fine, adults can get it at most pharmacies, just like the flu shot. I am not going to remember to ask you if you've gotten these immunizations, so please, just do it, or be honest with us and don't expose yourself to Nate. We still love you, we just can't put Nate's life at risk.

You have your immunizations? Awesome! Come on over to visit. Unless, you're sick or have been in close proximity to someone that is sick within the last few days. If you still need to come over, let me know and you can wear a mask. Even if you're healthy, please wash everyone's hands the minute you walk in our house or Nate's hospital room. I will probably forget to remind you, so please help me remember.

All of this sucks. This is not me, it's not who I am...but it's who I have to be to protect Nate during these awful treatments. This is going to be a rough winter. If you have any questions...at all...please ask. We REALLY want visitors and play dates. It keeps us all sane, but we have to keep Nate safe. I hate this, but it's the way it is.

Really?!?

 

 Wednesday, I worked all day like always and got a call from Tracy that Ellie had woken up from her nap warm and cranky. Crap!  No childhood illness is a minor one anymore when one of your children has a compromised immune system from chemotherapy. The fever seemed to be low grade, under 100 degrees, so I told Tracy to hold off on any Tylenol so we could see if she really had a fever.  I came home from work and got her out of bed to check her temp...it was totally normal...but I noticed a bug bite on her foot.  Thursday, she had no temperature at all, so I decided she didn't need to go to the doctor, but I did notice a couple more bug bites on her leg when I took off her jammies.

We went about our day.  Took Nate to the clinic where we learned that all his counts are awesome, but we are still expecting them to tank some time over the next week.  When Ellie got up from her afternoon nap I noticed some red spots on her face.  By dinner time, the "bug bite" on her foot had turned into a blister and she was super cranky.  That's when my aunt said the words "chicken pox".  I immediately got on good old Google for pictures.  The pictures sort of resembled the one "bug bite" spot.  Then Nate got his dressing wet and it started to come off and had to be changed. Geesh!  Talk about stress!  My stomach instantly started doing somersaults.  All this while we were supposed to be having a family celebration for my birthday...I think I instantly became a party pooper.

Nate's dressing change went well, thanks to Uncle Adam and the iPad, but I couldn't stop obsessing over Ellie's rash.  Chicken pox could be bad...really bad.  Nate has had the vaccination, but the vaccine isn't great and he CAN NOT get chicken pox...but he's already been exposed...if that's what it is.  Also, I took Ellie to the clinic earlier that day...holy crap!  I could hardly sleep because I just wanted to see what the rash did over night and get her to the doctor today.

When she woke up this morning, a spot on her nose started to look like a blister, but the rash had not spread at all.  I'm starting to think that it may be hand, foot and mouth disease now, because it hasn't spread to her trunk at all and the spots are mostly on her face, legs and hands.  This would be better than chicken pox because it is not contagious for as long, and has a shorter incubation period, plus I'm pretty sure Nate has had it already.  Once I get a diagnosis from her doctor, I will call the clinic and see what steps we have to take.  She has a doctor's appointment in an hour and I can't wait to get her there.  I just need a break.

New York, New York

Nate's 1st trip to Central Park...hint...he's in my tummy :)



Nate is continuing to do SO well, it's quite strange really.  Almost like we just went and hung out in the hospital for a few days and they forgot to give him chemotherapy.  He's even been refusing to nap some days!  Isn't chemo supposed to zap your energy?  Not my crazy boy...not this time.  There is still a chance that mouth sores and/or a fever could be coming, so we continue to pray.  We really could use a break and would love to be home for the next couple weeks before starting round 5.  Nate has a clinic appointment tomorrow afternoon and I'm anxious to see what his counts are doing.  Every round has been so different for him as far as the dropping and recovery of his white blood cell count, that it's hard to predict.  Basically, once we know that his counts have recovered, we can breathe a little easier until the next round.

Well, we found out some definite plans for Nate's New York trip, though, basically everything is still up in the air.  We are due to be in New York on November 2nd for consultation and his surgery is tentatively scheduled for November 7th.  We hope to leave on November 1st, but we are also hoping to catch a ride with the Corporate Angel Network, which means we are at their mercy.  Nate will still be recovering from his 5th round of chemo when we travel and it will be dangerous for him to take a normal, germ infested, commercial flight.  I have a list of options, thanks to some great friends who compiled it, that I will look in to if the Corporate Angel Network doesn't work out, but we may not qualify for most of them and may have no other choice than to fly commercially.  Nate's surgery will happen on November 7th, only if his white cell count has recovered from the 5th chemo cycle.  If it has not, he will be at too high of a risk for infection and we will just have to wait another week and try again.  I really hope this doesn't happen because I would like to minimize the amount of time we are away from home.  After surgery, Nate will recover, then return home for round 6 of chemo.  The recovery time is generally 7 to 14 days.  I guess most kids are there for 7 days, but they told us to count on 14 to be safe.  So, we are looking at anywhere from 2 to 4 weeks in New York.  We are hoping and praying for 2.

It is going to kill me to be away from Wes and Ellie for that long...especially Ellie.  At least I can talk to Wes on the phone and hopefully do Facetime or Skype or something...but Ellie is just too little.  If I'm not there to hold her and snuggle her, I don't think she "feels" her Mommy with her.  What if she starts walking while I'm gone?  Man, I will hate that...sometimes these sacrifices just suck.  So, the positives...other than having our baby boy operated on by the best neuroblastoma surgery in the country.  We are hoping Nate will be feeling good, with a decent immune system when we get there, because we will have a whole free weekend in New York to show him the big city that Chris and I love.  Guess what else?  Chris and I will be celebrating our 10th wedding anniversary on November 3rd...in New York!  We were planning on taking a little trip for our anniversary and those plans got thrown out the window when Nate was diagnosed with cancer.  It looks like Nate wanted us to go to New York for our anniversary trip.  We have a few friends in New York and may try to talk one of them in to babysitting Nate so we can celebrate our anniversary and see a show or something.  Hear that New York friends?  Anyone up for babysitting? :)

This whole trip thing is makes me feel excited, scared, nervous and happy all at once.  I'm sort of looking forward to being in the city...but not stuck in the hospital.  I'm happy for Nate to have the rest of this tumor out of him, but man, surgery is just always so scary.  I'm excited for a little trip but nervous that it is going to end up being a long trip and I will miss my kids and family so much.  It's just so much of the unknown.  We are planning on staying at the Ronald McDonald House.  Chris, Nate and I will go on November 1st and Chris will stay until a day or two after Nate's surgery and will return home to work if Nate is doing well.  It will be very hard for me to be there alone with Nate, because it will mean that I will get very few breaks to get out of the hospital to run, shower or breathe fresh air.  I'm hoping some of our friends can come and sit with Nate for an hour here or there to give me a break.  One of my friends has also offered to leave her family and job for a few days and fly out to be with Nate and I when Chris leaves.  It is such a generous offer, I'm having a hard time accepting it...but I am strongly considering it.

I want to take a moment to thank everyone who has been doing so many amazing things for us, big and small.  I want to send you all a heartfelt thank you letter and a great big hug...unfortunately, time just isn't permitting right now.  I am also afraid of forgetting to thank someone if I thank too many individually.  I really am a total scatter brain these days and can barely keep a thought in my head.  I really want everyone to know that every single thing you have done for Nate and our family has been important to us and greatly appreciated.  Also, if you have sent me an email, note, text, comment or Facebook message and I have not responded, please forgive me.  It is not because you are not important to me or I am mad or upset, it is purely because I didn't have the time to respond at the moment I received it and then my scatter brain took off and I forgot to respond.  Please know that I am reading absolute everything that is sent to me and we love it all.  It lifts us up daily and gets us from one moment to the next.  If you send me something that requires a response and I don't get back to you in a couple days...please send it again.  I promise I will respond as soon as I can. Thank you again!  We love you all!

Happy Birthday to me...

I never, in a million years, thought that I'd be spending my 34th birthday in the hospital with my 2 year old son while he was receiving chemo...but here I am...and I actually had a great birthday! The only thing that would have made it better would have been also spending it with Chris, Wes and Ellie. Nate is doing awesome and I really couldn't ask for a better birthday gift. I got to spend some good, quality time with Wes and Ellie over the weekend and Chris and I actually got to go out to a fancy dinner, alone, on Saturday night. Sunday, my friend, Jen and her daughter took me to get a pedicure. I picked out a super sparkly color that makes me smile when I look at it. I can now tap my toes together like Dorothy from The Wizard of Oz and say, "There's no place like home".

Today, I had more love poured on me than I could have thought possible. There were more visits, gifts, food and treats, cards, calls, texts and Facebook notes than I thought could possibly fit in a single day. They came from family, close friends, old friends, new friends, aquaintances and former strangers. I really had no time to think about anything but the laughter, fun and love that filled our little hospital room. Thank you to everyone for that incredible gift!

My aunt came to visit tonight to help me get Nate ready to leave first thing in the morning and I took the opportunity, while she was here, to fit in a little run up and down the parking garage stairs and around the top, closed off, floor of the parking garage. I had to run off all the yummy treats I ate today! I came back in the hospital after my run to find a mob of people in the main lobby. I looked over and quickly realized that a code team was working on a child (on the lobby bench) that's heart had stopped. I don't know the what or why of this situation but I instantly broke into tears and prayed for God to watch over that baby. Man...every moment is a gift! Any one of our children could be gone tomorrow. Run and laugh and play with them...TODAY! You will never regret it.

It's Lonely Here

I find having a child with cancer, very lonely. I very rarely get any actual alone time, but still I feel so alone. There are lots of people around me and holding me up through the rough times, so I'm not sure where the loneliness comes from, but it's there.

The hospital is the worst for me. I'm never alone, I am constantly busy entertaining and talking with a 2 year old, which is lots of fun, but there are no breaks. There is no other mom to chat with at the playground while chasing kids around, no lunch talks with my mom and no quick conversations with my husband in the evenings. It's just me and Nate...and a nurse every once in a while. I truly cherish this one on one time with my middle child, the circumstances are just too much sometimes. When he's not feeling well, it's the worst...I feel alone...and helpless. The new hospital is nice and we love the big private rooms but I think it contributes the the feeling of isolation. Nate's been asleep for several hours and I'm in this big, dark room alone with my thoughts. Thank goodness for the phone and Internet or I would surely go crazy. I hate staying in the room, so Nate and I wander the halls frequently. It's very quiet out there and you rarely see another family...very lonely.

At home is better...but not a lot. No one calls for play dates anymore. Not that we could go much...it just sucks. I am different now and don't think I'll ever be the same. Can my friends and family really relate to me anymore? I know they love me and care and sort of understand, but they can never truly understand...thank God. The new friends we are making because we share the ultimate horror...a sick child...can truly understand, but I feel a disconnection there also because we each have so much to deal with, with our own children we can't take on each other's problems.

When I take Nate out in to the world I literally feel like a big spotlight is on us...but it is so bright that people can only stare for a moment and have to quickly turn away. Maybe it's the reflection off his shiny bald head, maybe it's the intense glow of his special soul. No one ever says anything...not once. I've started to question if people think I just gave him this haircut on purpose. I can't really blame them because, before this, I'm sure I wouldn't have said anything either...afraid to bring up a sore subject. Ha! Like they had forgot their child had cancer and my asking about the child would suddenly remind them. When I'm out and about with Nate, I want you to ask. When I'm pushing him in the swing next to your child, instead of staring while trying to look like you aren't staring, simply ask, "Does your son have cancer?". I want to talk about it. I want to tell you about this extraordinary boy and his daily fight. Maybe I'm the only cancer parent that feels this way. I've always been an over sharer...but, when people stare and don't say anything, it feels so lonely...like no one will ever understand us.

P.S.
Nate continues to handle "The Red Death"(and the other chemo drugs) like a super hero! Playing and eating and zero throwing up...a couple little heaves where I thought he was going to lose it...but nothing! I know the side effects of these drugs can take a awhile to show up sometimes but we'll take as many good days as we can get. Please continue to pray for Nate.

Are You Aware?

 
September is over, which brings Childhood Cancer Awareness Month to a close.  Did you do something to spread awareness this month?  If not, you still have plenty of time...these children need our support year round, not just in September.  What does awareness mean anyways?  A fellow Neuroblastoma mom, that I met through Facebook, did a radio interview this month and was asked this question from a caller.  

"I'm trying to figure out how me personally being aware of any cancer helps anyone? My boss has cancer and I'm aware, but I'm not a doctor and don't have money to donate, so how much can just awareness do? A friend of mine's son had cancer and they replaced his leg with metal and he was 10. I'm aware of that also, but again, my awareness did nothing to help this child either. Isn't reaching out to people with money to donate more of a help than just being aware?"

At first, this made me mad, but really it's a very good question.  What good is awareness anyways?  What if you don't even have an extra $5 this month to donate?  There is still plenty you can do.  The point of spreading awareness, as I see it, is to teach people who have never been close to a child with cancer what it truly means for them and their family.  If you are really, truly aware and know what these children go through every day to fight for their lives, you  will do something...anything.  So, what can you do?  Here are some of my ideas.


1. Spread awareness.  Give these children a face and a voice.  Get the word out there.  Maybe you don't have any money to donate, but someone does.  The more you spread the word, the better the chance that the information will get to those that do have the money to contribute.


2. Volunteer your time.  There are so, so, so many ways and places to volunteer.  You may not have any extra money to donate to an organization that raises money for children with cancer, but do you have an extra hour a week?  How about an hour a month?  Whatever time you have will be valued.  These organizations rely on volunteers to make miracles happen.


3. Make a child smile or make the family's day easier.  Do you know a family with a sick child?  How about a friend of a friend of a friend?  Can you make a meal, run an errand, babysit their other children, do a load of laundry, sit at the hospital with the sick child so the parent can get a brief break?  So many people have done so many nice things for us, we surely would have gone crazy already without all the help.  If you are lucky enough to not be close to anyone with a sick child, then go to your local children's hospital and volunteer to get to know some children.  I guarantee spending an hour of your day on the oncology floor of a children's hospital, will change your life forever.


4. Use your talents.  Maybe you don't have any extra funds in your bank account to contribute, but you can be creative.  Have a garage sale, make something for a craft fair, hold a bake sale or a lemonade stand.  Use a little of your time and talents to raise some money for sick children.  I'm sure it will be time well spent.  Maybe you only raise $50.  It's still $50 more than the organization had before your efforts and lots of little things add up to big, big things.


5. Donate blood, platelets and sign up for the bone marrow registry.  I've donated blood before, because people need blood...right?  I never really gave a ton of thought to where this blood was going.  In the last three months, Nate has had 5 blood and 2 platelet transfusions.  Each round of chemo, knocks out the blood making system in his bone marrow.  He gets shots every day to help his white blood cells recover, but the only way to help his red blood cells and platelets, is to get transfusions. Donating blood has taken on a whole new meaning.  Please, take some time and donate.  I have also thought for years about signing up for the bone marrow registry.  My only hesitation was that if they needed my marrow, I would be put under anesthesia and it would hurt.  Really?!?  It would hurt?!?  What the heck was wrong with me?!?  These brave little souls fight every day to stay alive and I was afraid of a big needle?!?  Nate is lucky enough that he will be able to receive his own stem cells, but many more children (and adults) rely on donor marrow to LIVE.  Go sign up!  Maybe you'll be lucky enough to be chosen...it will hurt a little...but you will always know that you helped to save someone's life.


Those are my ideas.  If you have any more, feel free to leave them in the comments.  I am also going to work on a list of great children's cancer charities, in case someone does have some money they would like to donate.  So please, don't let September end...keep spreading the word...kids get cancer too.


P.S.
Nate's first day of round 4 has been smooth sailing.  He's fighting like the super hero he is and we pray that this will continue to be as easy on him as possible.

Checking In



Yesterday, we were told to wait for a call from the hospital.  I decided I was not going to just sit around at home and wait.  We were going to have a little fun.  Wes was off of school, so I wanted to take advantage of my time with my boys.  We got up, got Grandma and headed to a movie...Dolphin Tale.  I should have known I would be in trouble when the preview before the movie had me bawling.  The preview was for a Drew Barrymore movie coming out, about a family of whales that is caught in thick ice and is unable to swim under it to get to the sea.  A team of people, come together to help the whales.  An entire town shuts down and all the people come to crack holes in the ice leading a path for the whales to follow to the ocean.  I was crying so hard, I couldn't see.  I know I'm a little sensitive, and I see cancer in EVERYTHING now, but really this couldn't have been a better metaphor for what we are going through.  We are stuck...trying to find our way out...and every day a team of people (great doctors, REALLY great nurses, awesome hospital staff and all of our family, friends and even strangers) come to crack another hole in the ice to help lead us out of this mess.

Then came the movie, which I highly recommend.  It may be a little corny and maybe it's been done before, but I think kids, and maybe adults, need to see more movies like this.  Even though I cried like a baby, I left feeling a little lighter and the boys loved it!  Without telling too much of the story, it basically is about a dolphin who had to have her tail amputated and how she has inspired many people, especially soldiers and children who have also lost limbs or limb function.  When the child who had lost a leg showed up in the film, my mom and I both lost it.  It's just so hard to see these babies having to deal with stuff like this.  Wes was concerned that Grandma and I were crying and asked my mom, "Are you crying because that little girl is injured, like Nate".  My mom answered him that sometimes when little kids lose a limb, it is due to cancer and that makes us sad.  He thought for a minute and said, "It's ok Grandma, that little girl doesn't have cancer.  She lost her leg because she was in an accident with her Mommy...and after all, she's still alive!".  Wow!  What a sweet, sweet boy.  So concerned about his Grandma's feelings and trying to figure out all this pain.  I so wish he didn't have to go through any of this with us...but he does.  So, all I can hope and pray for it that this affects his life in a positive way.  I hope I can teach him to use his compassionate nature to help those that need help, and maybe make a big difference somehow in this world of cancer.

We left the movie, grabbed some lunch to eat in the car, said goodbye to Wes, Grandma and Linde and headed to the hospital.  Nate doesn't even ask questions.  There's no, "Mommy, why can't I go play with Wesley, Grandma and Linde?", "Why do I have to go to the hospital again, we just left there on Monday?", "Why are you taking me to a place that pumps poison in to my veins and makes me feel so sick?".  Thank God he doesn't ask these questions...how could I possibly answer them?!  He just says, "I go hospital, see my friends".  Oh, how I love this boy!  We got to the hospital at about 1pm, changed rooms 3 times (the first didn't have a bed for Nate, the second didn't have the bench that Daddy prefers to sleep on, so the nurse was nice enough to switch us to a different room), and Nate played and played and ate and played and ate.  The chemotherapy wasn't started until 11pm!  Everything moves SO, SO slow in the hospital.  I try and take deep breaths and not stress, but it causes me major anxiety.  I just want to get everything started, so we can get out of there ASAP.  Now, we'll probably end up staying until Tuesday morning, because chemo won't end until 11pm on Monday and I don't think we want to be dragging Nate home at midnight.

Daddy spent the night with him and so far he is doing ok.  He gets 3 drugs this time.  Two of them are new to him.  One of them is the same drug that he got the first 2 rounds but at a much higher dose this time.  One of the drugs is a straight 72 hour infusion and it's nickname is "The Red Death".  How would you like to pump your child's veins full of "The Red Death" for 72 hours straight?!  Really, this has got to be hell.  There are so many terrible, terrible possible side effects associated with these drugs, I can't even bring myself to type them.  Dear God, please protect my baby boy.  Let these drugs cause death to the cancer cells and leave my sweet Nater alone.  Amen.