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