Not Goodbye but Until We See You Again

Tuesday night was the wake for Seth and we were both really nervous and emotional. 

 

To say this was hard is an understatement.  Our little Seth laid there looking like he was sleeping.  I was nervous he wouldn't look like himself because those last few days he was very bloated from all the fluid he was retaining.  This would be the last time we would ever see our little guy and I just wanted him to look like his happy self and I'm so thankful he did.  Dressed in his red, white, and blue "All American Boy" onesie he will forever be our little July 4th firecracker.

The amount of people who came out to support us was really overwhelming. Friends, family, neighbors, coworkers, and many more.  At least a dozen nurses from 9 North of Boston Children's were there -  I even joked with many of them about who was manning the floor?

There were tears, and lots of them, from us to those paying their respects to Seth but, all things considered we held it together pretty well.  A lot of people said "you're the strongest people/woman I know" and my personal favorite was when someone said to me "You're a rock."  Now anyone who knows me, knows I cry at the drop of a hat!  If I see someone crying who I don't even know the odds are I'll be crying momentarily with them.  I'm a blubber head!!  So this really meant a lot to me, but you better believe I still have moments, and many of them where I'm sobbing over the loss of Seth.

A few things stuck with me from that night:

* The priest explained Seth's mass on Wednesday would not be the usual funeral mass, but a mass of the angels.  So true, out sweet little angel taken way too soon.

* And the second a quote from our neighbor who is also a nurse.  He said someone in the PICU once told him, "the smallest feet can leave the BIGGEST footprints in our hearts."  That statement couldn't be truer as it relates to Seth.

Wednesday morning we were up early to prepare for the funeral since we were being picked up at 8:30.  Sadie would be attending today so we tried to make things sound fun and told her we were going to ride in a special car (limo), which she loved and said Dada should get one!!  We had the casket closed on Tuesday after the wake so Sadie didn't have to see him.  We thought it would be too much for her to process seeing him and didn't want to stir up all sorts of questions. 

She noticed the flowers she got for brother immediately, and whenever anyone was saying their prayers in front of the casket she told me they were looking at her flowers.  She did get upset when watching the video of Seth's pictures saying she missed brother but was easily distracted, thank goodness.

We got the surprise of a lifetime when our good friends, who live is TEXAS, walked through the doors.  Steve and I immediately both started crying and hugging them.  It meant so much to us that they came all the way up for Seth's funeral but also to support us.  We only wish it could have been under better circumstances and that we could have visited for longer.

Seth's service was absolutely beautiful.  Most people know I have been a church goer since childhood, attending 7:30 am mass every Sunday.  I continued attending mass at Assumption College and after getting married.  I however had a hard time going once we got Seth's diagnosis.  I struggled with faith, and how could God let this happen to my baby boy? How could he not heal him and keep him here with us?

I have heard many people say this is God's will and it makes my skin crawl.  How could something so horrific be God's will?!?!?!?  How could cancer, chemotherapy, feeding tubes, central lines, multiple surgeries, constant poking, prodding, endless testing, months away from your home, and death of an almost 14 month old baby be God's will?!?!? The priest during his sermon spoke right to me and Steve and said "this is not God's will, this is never God's will and don't let anyone tell you that."  Ahhh .... 

 

 

In his closing remarks he turned to me and Steve again and said, "grieve with love, grieve with hope, grieve with faith."  What a beautiful sentiment.

Shortly after my brother in law read the eulogy Steve and I had written for our sweet little man:

There comes a time in most people’s lives when they decide to settle down and start a family.   When they envision their future, it is full of love and laughter.  Sure there will be some hard times to endure, but nothing they can’t handle.  Whoever could have imagined three birthmarks would lead us here?  Never in a million years, but here we are.

Although Seth was only here with us for 14 months he lit up a room no matter where he went.  Those big blue eyes, scrunched nose, and infectious smile turned heads and made people stop in their tracks. 

Seth could eat puffed rice cereal for days but wanted nothing to do with his birthday cupcake.  He got pure joy out of throwing his toys on the floor and making whoever was around pick them up repeatedly. Seth loved being carried and walked around endlessly.  He was deemed the mayor of 9 North at Boston Children’s Hospital and started crying the second he reached the entry way to his room.  Seth greeted everyone with his chicken wing wave, especially if you weren’t paying attention to him. When it came to sleep Seth wasn’t interested unless he was swinging, we’re not sure if anyone has ever loved their swing like he did.

While Seth could put a smile on anyone’s face, no one lit up more than his big sister Sadie.  She loves “Brother” with all her heart.  There was no better sound than the laughter and giggles heard when they played together.  Hearing her say “Oh Brother!” when he took her glasses off or threw his toys on the floor for the umpteenth time was heartwarming.  We will continue to talk about brother and give kisses to the sky at bedtime to say goodnight.  There will be lots of questions going forward, probably for years to come, it may be through a sea of tears that we answer, but our job now is to make sure she remembers Seth and how much he loved her.

We are all heartbroken over the loss of Seth but the support Steve, Sarah, Sadie and Seth received through his diagnosis, treatment, and now, has been nothing short of amazing.  Friends, family, complete strangers, acquaintances, Seth's doctors, medical team, and the nurses of 9 North which are now family provided food, gift cards, monetary donations, help with Sadie, ears for listening, shoulders for crying and an amazing golf tournament.  This is more than anyone ever could have asked for.  Thank you.

At a time like this, there are so many different feelings – anger, sorrow, confusion – and so many questions.  Why did it happen?  Why Seth? Why did his brain respond so beautifully to treatment but his kidney did not?  We may never know the answers to these questions and that is a burden Steve, Sarah, Sadie and all of us here will continue to bear in the coming days.  Although it’s hard to say you’re in a better place we know you’re in good company.  Today we don’t say goodbye to Seth, we say, until we see you again. 

We love you and miss you.

Once the mass was over we proceeded to the cemetery. 

The Tewksbury police department has been amazing.  They kept an eye on our house during those last few weeks when we were all in the hospital and offered to do anything we needed around the house.  They brought a cruiser by to let Sadie and some friends play with the lights, sirens, and even go for a ride.  And when it came time to lay Seth to rest they sent him off with honors.  There were two officers outside on motorcycles during the entire wake. The funeral procession included a police escort along with every intersection blocked off by police officers from both Tewksbury and Wilmington.  It was really something special to experience.

As we were making our way to the cemetery the skies opened up with some serious, heavy rain.  Nothing in Seth's journey has been easy, so this was just his way of letting us know he was there with us.  Thank you to the officers, funeral home staff, friends and family who got soaked through and through during the procession and the final prayers as we had our hearts set on being grave side.

Now comes the hard part ... living life.  All the planning is over, and while there are a few things that still need to be done such as; making memory pieces from flower arrangements and choosing a headstone, there is nothing more difficult than living every day without Seth.

 

Until we see you again ...

Heartbroken

Steve, Sadie and I are heartbroken .... 

 

 

Tuesday afternoon around 1pm Seth looked like he was working harder to breath and his chest was "pulling."  Sadie and I were planning to head home for her first day of preschool Wednesday and I noticed when we were about to say goodbye.  We called the nurses in and it was decided we would up his morphine.  We weren't sure if he would settle again like the week before so I headed home with Sadie and told Steve to call me if anything changed or if I should come back.  We made sure that Sadie said goodbye to Seth and gave him kisses on his piggies. 

 

 

Before even getting home Steve called and said I think you should come back.  I gathered a few things at home and headed back to the hospital.  Thankfully my mom came over to stay with Sadie and tackle her first day of preschool and luckily there wasn't any traffic. 

 

I held Seth for hours that night not wanting to put him down for fear of missing something, missing the end. 

He had a pretty restful night but his breathing continued to be the same. 

 

Wednesday morning we changed his diaper and I got settled in the recliner with him again.  We stayed like that ...

 

We had a nice visit with one of our favorite nurses who came in on her day off and in the middle of moving just to see us and Seth.   Around 2pm Steve headed downstairs to get some lunch,  Seth's breathing was still the same.  A little while after he left I saw one breath took much longer but then he started with the same pattern he had before.  A few minutes later he took his last breath, just as I wanted surrounded by love laying in my arms. 

 

We spent hours at the hospital holding him and telling him we loved him and how sorry we were this happened to him.  How could our perfect little boy be gone?  We didn't know how we could ever leave him and we didn't know what to do next.

 

We are all heartbroken and still very much working through everything but we have a strong, sassy little girl who needs us more than ever.  I think Sadie is going to help us as we navigate through finding our new normal.  She misses her brother so much and she asks us if we miss him too.  We give kisses up to the sky every night now to say goodnight to brother.  She doesn't completely understand what is going on but at the same time does.  There will be lots of questions going forward and we will be there for her, it may be through a sea of tears that we answer these questions but our job now is to make sure she remembers Seth and how much he loved her.

 

 

 

We can't say thank you enough to everyone for their support.  Friends, family, complete strangers, acquaintances, Seth's doctors and medical team, and the nurses of 9NW which we will now always think of as family.  This journey has been harder than anything we've ever had to do before and will have to do going forward.  You all made it a little easier, thank you.

 

Now we work on our final send off to our sweet, beautiful little boy ....

Time for Comfort

After some good playing and picnicing on the 6th floor:

 

 

 

We finally made it up to the 9th floor late last Friday night after making many visits upstairs to see our favorite nurses.  Since the clinical trial would reimburse for hotel stays we decided to have a few nights in Boston with Sadie.  We each stayed with her for a night and she loved being at the hotel and being so close to get back over to see Seth. 

 

We had planned to stay through the weekend to watch Seth's calcium and see if we could get to a place that we felt comfortable bringing him home.  Unfortunately, that didn't happen.  Over the weekend his oxygen levels started dropping a little while sleeping and he was put on blow by oxygen to keep him up in the 90's.  We had a lot of discussions with the doctors and decided we weren't comfortable bringing him home with the way his oxygen was ... I mean how would we sleep?

 

Saturday night we even got out for a date night thanks to my company for giving us tickets to the Red Sox game.  It was nice to get out for a little while even though they didn't win.

 

 

On Tuesday, Seth moved into a nice corner room on the 9th floor since we would be here for a while.  Sadie and I were at home for her preschool get together and we were planning to come back on Thursday.  Wednesday night Seth's breathing really seemed labored, his nose was flaring, his heart rate was elevated and his oxygen levels were dropping.  Sadie, my mom and I headed into the hospital to be with Seth and Steve.  We talked with the doctor and Seth would begin a PCA of morphine to help keep him comfortable.  It took a number of adjustments before we found a place he seemed to be able to rest. 

His belly is very distended and we don't know exactly what is causing it but it could be he's holding on to fluid, the tumor in his abdomen is growing as well as the tumors in his lungs.  We decided to stop the clinical trial because we don't believe it's going to give us the extra time we were hoping for and the volume in his stomach could be adding to his discomfort.  Now we are focused on keeping Seth as comfortable as possible and spending as much time together as a family while we can.

Having the discussion with Sadie about how brother has been coming to the hospital to try and fix his boo boo but the medicine isn't working was heart breaking.  Knowing how much she loves her brother and how we will have to have this conversation over and over again because she's so young and doesn't fully understand is hard as well. 

 

For now we're enjoying a lot of family time at the hospital which includes family sleep overs, lots of playroom time, meals at Bertucci's (the dough restaurant) and visits from friends and family. 

 

 

 

 

 

We don't know how much time we have left with Seth but we are trying to make the most of it ...

What's Up ... Seth's Calcium!

Monday morning we headed into clinic to complete the final testing for the clinical trial.  We found out last week he was already eligible for the EZH2 trial at 2 weeks post op so we decided to start this one rather than waiting an additional week or more for the other one.

 

We had an early clinic time of 7:45am.  Those of you who know me well know I'm kind of a car seat crazy lady but Monday when we arrived to the garage I took Seth out of his seat so he could ride forwards on the way down to finding a spot.  He loved it and was happy looking out the window and touching Steve's head.

 

 

We met with Dr. Wright signed the consent papers and Seth had his labs drawn.  We headed over to Children's for an ultrasound of the heart, EKG, and some X-rays of his wrists and knees.  Afterwards we returned to the clinic to meet with the research nurse.

 

We were brought back to infusion room V and Seth was hooked up to for another EKG as part of the trial preparation.  He didn't love this and didn't stay near as still as he had just a little bit earlier while sound asleep.  6 minutes later and 3 EKG's were done!

 

The charge nurse of the clinic came in and told us that Seth's calcium was 15.9!  Whoa that's high and in the danger zone.  She wanted to let us know they would be starting him on some fluids and Lasix in an effort to flush out his system and Dr. Wright had been paged as well.  She arrived not too long afterwards and said her recommendation would be to have him admitted to get his calcium under control if we were ok with that plan.  We agreed because we wanted to make sure his numbers stayed within the acceptable range to start the clinical trial on Wednesday and of course didn't want to risk it going higher and damaging his heart. 

 

 

We hung around the clinic for a while waiting for a room to open up at Children's.  His labs were taken again and his calcium had come down to 12.6 which was good but still in the high range.

 

We finally got over on the 6th floor and headed to the play room. 

 

Once Seth was settled, his hydration had begun and the resident on service came to see us Steve and I went for dinner and afterwards I headed home.

 

Tuesday morning Sadie and I brought lunch into the hospital and spent the day as a family.  She loved riding into the hospital in Seth's car seat and said facing backwards was comfy cozy.

 

Sadie loves coming to the hospital to visit brother, but also seeing the nurses, endless amount of chocolate milk, usually cookies, and playing in the playroom.

 

 

Over the course of the next few days a combination of Lasix, hyper hydration, calcitonin, and another medication were given to Seth in order to get his calcium down. 

 

He also started the clinical trial on Wednesday.  He's done well with it so far despite it being a large volume for him to take at once right now.  We're thankful for his G-tube as we've heard it tastes absolutely awful and many kids complain when having to take it orally.

We had a few visitors during our stay this time which is always nice and provides a good break/distraction during any admission.  Cliffy and Meagan who we didn't get pictures with but both kids enjoyed.  And a few days later Gary, Leah and Charlotte stopped by to say hi after an appointment.

 

 

At this point Seth's calcium is down but only to 11.3.  We will be staying the weekend to see if it comes down further and if we can get him off the fluids and Lasix to make home care a little easier.  Hopefully we will be transferred up to the 9th floor soon.  We've visited many times and we miss our 9N family as much as they miss Seth. 

 

Who wouldn't love getting hugs from this little guy?