Our Smiley Seth

Our Smiley Seth

Thursday, August 17, 2017

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?
 

Sunday, August 13, 2017

"Normal" Time

Over the weekend we just enjoyed being a "normal" family.  We had play dates with friends and family and just enjoyed being with one another. 
 
Friday we had a good day of going to the library, hanging at home, and Seth had his first swimming experience.  To say he wasn't a fan may be an understatement.  The water was frigid so I can't blame him but he looks adorable in his swim gear.
 



Saturday we headed out for a play date.  My friend Michelle and I both had our girls in November and our boys in July.  What are the odds of that?!?!?  We've been wanting to get together and it finally happened.
 



 
Sunday morning Steve went out early fishing with his brother.  Seth went down for a nap so I got some quality time with Sadie the wiggle worm and dancing machine before Seth joined us.  We also had a visit from Laurie who brought us lots of treats. 
 


 
Sunday afternoon was another play date at our house with Buddy and her family from Connecticut.  Seth has been very selective with who he lets hold him as of late.  If Steve and I are around he doesn't go to many people but Buddy was lucky enough to win him over for a little bit.
 






 
 
 
It was so nice to have a weekend home where we were all together and visit with friends.  Hoping for more of these in the future.

Thursday, August 10, 2017

MRI's and Tumors

We have anxiously been awaiting the next steps for Seth.  As part of determining how to proceed a GFR kidney study and MRI's of the brain, spine and abdomen were ordered.
 
Tuesday Seth had the GFR study to see how his left and only kidney is functioning.  This is pretty much an all day affair arriving for the die injection and then having to return for 3 blood draws later in the day.  We arrived early and Steve headed back with Seth for a peripheral IV to be placed for the die and his port to be accessed.  It seemed like they were back there for a very long time but once they came out we headed up to the 9th floor to see our favorite nurses and use the playroom to fill some of the waiting time before blood draws.
 

 
We finished up and were home around 3:30.
 
The next day we headed in early again for the MRI of his brain, spine and abdomen.  On the way in we got a call from the Jimmy Clinic that Dr. Wright wanted him to get some fluids after the scan so we should head over there when he was done.  We were a little early so we headed upstairs again to the 9th floor to deliver a few pictures of Seth that the nurses had requested for their break room.  He was scheduled to arrive at 9:30 for a 10:45 scan.  He didn't get taken back until about 11:15 and the scan was supposed to last about 2 hours. 
 
 
 
Now that Seth is 1 a parent typically goes back with the child to reduce separation anxiety.  I got all dolled up in scrubs (not as comfortable as I thought - and certainly not flattering) and headed back with Seth.  He was given a little propofol and was off to sleep. 
 
We headed out for lunch and returned to the waiting room about an hour later.  We always know these things can take a little longer than expected but at the 3 hour mark I finally checked in with the receptionist and was told he was still in the scanner.  This was concerning but we thought maybe it was just taking longer to get the needed scans.
 
A little while later we finally went back to the recovery room where Seth was already awake and picking at his port dressing.  Back to his usual self!  The fluids had been started so we needed to hang out for an hour before heading over to the clinic.  We played, got dressed, and start him on a feed since he hadn't had anything since 6:30 that morning.
 
Around 4:30 we headed over to the Jimmy Clinic, checked in, changed the usual explosive diaper upon arrival, got vitals taken, and waited to be called back.
 
Dr. Wright met us in the exam room and I could just tell by her face something was wrong.  First the brain has remained stable and hasn't started to grow even though it's been weeks since receiving treatment.  However, the kidney tumor has grown back in the space his right kidney used to reside in and is already half the size of what was removed, he also has mets in his lungs that are too numerous to count, and there is a concerning spot on his T5 vertebrae.  This is why the scan took so long.  The radiologist saw the spot of the spine and expanded the images to include the chest.  This has all happened in 2 weeks!!  How and why does this keep happening to Seth!?!?!?  If you saw him you would never even know because he looks amazing and everyone, medical staff included, always tells us.
 
Radiation at this point wouldn't help because of the size of the tumors.  Due to the amount of measurable disease Seth qualifies for the Atezolizumab clinical trial that we have been waiting to start but now also the ezh2 study.  Seth isn't able to start any of the clinical trials until he is 4 weeks post op so we have about 1.5 weeks left to go.  We are trying to get things lined up so he can begin as soon as he meets the 4 week qualifications.  The Atezolizumab study is believed to be promising and our best option at this point for more time with him.
 
Dr. Wright did mention they are concerned about the lungs and Seth's respiration as the disease progresses.  We discussed the options as things progress including being home, a hospice house, or on 9NW for his final days.  At this point we have a lot of things to consider.  First and foremost what is best for Seth but also Sadie and how this will all effect her and how we help her through it.
 
 
 
We are hoping the clinical trial will keep the disease at bay for a little while but with the rate it is growing we just don't know.  Why his brain responded so beautifully and the kidney is taking off like wild fire are unknown and may be something the doctors take a look at later, comparing the two tumors and there differences even though they are both ATRT.
 
For now, we are home and enjoying as much family time as we can along with visits from friends and family.
 

 
 

 
 

Sunday, August 6, 2017

Next Steps

The last month has been a constant roller coaster of ups and downs and a total mix of emotions.

Seth is doing really well after the surgery to remove his right kidney and is enjoying his time at home.  He's so much happier and seeing him and Sadie playing together, hugging and laughing is really the best.
 
The next step in Seth's treatment is being worked out.  We were hoping the cancer would be contained in Seth's kidney. Unfortunately, the pathology tested positive for cancer along the major vein that supports the lower portion of the body as well as on a muscle.  There was a small chance that stem cell transplant was an option if the disease was contained within the kidney but with the pathology results that is no longer an option. 

It has been over a month since his last chemo treatment and everyone is worried that the small remaining tumor in his brain will begin to grow without treatment.  As a result we are in the process of getting radiation set up to zap that spot in hopes it will clear it up completely.  Then we're working on figuring out the details of a clinical trial and radiation combination for the abdomen area. 

 

Monday, July 24, 2017

Bye Bye Right Kidney

The last few weeks have been a blur.  From the time we found out Seth had a large tumor in his right kidney we've been up and down and all over place emotionally with all the testing and information we've been overloaded with.
 
Seth's had ultrasounds, a cat scan, numerous consultations with our primary team as well as the solid tumor team.  At one point we did hear the words "I wish I could tell you he's curable but I can't, I'm so sorry" after asking that very difficult question.  We just felt worn down and didn't know how to move forward and what was best for our family and would give Seth the best quality of life.
 
When leaving the hospital on Saturday we thought we had a plan in place.  We still had a meeting set up with the surgeon on Monday to discuss removing the kidney but didn't think we would be going that route.  Our focus now that we are not working towards a cure is giving him the best quality of life and that includes being home with us and especially Sadie and OUT of the hospital as much as possible.
 
Come Monday Seth had his labs done at home and as we were driving into the Jimmy Clinic we got a call that his calcium was 14.2.   This is the highest it has been yet!  After meeting with the surgeon we would meet with Dr. Wright our primary oncologist to  discuss.  As we were driving in Steve and I discussed that even though we weren't considering surgery beforehand now it needed to be seriously considered because his calcium would most likely be an ongoing problem.
 
When arriving at the clinic Seth's vitals were taken quickly and shortly after we were taken back to a room so he could start a bolus of fluids to start getting the calcium down.
 
Dr. Weldon came to see us (right on time!) and we talked about the surgery.  He showed us the scans of Seth's kidney and the tumor is very large.  He explained that he would take the entire kidney and surrounding lymph nodes if we decided to go with the surgery and it had been tentatively scheduled for next Monday.  If we decided we didn't want to go that route it will be easier to cancel rather than trying to get in the schedule.  He was really thorough in his discussion with us and explained all he does is tumor removals within the abdomen area.
 
Soon after Dr. Wright came in and we discussed the high calcium.  She said that we could go home if we wanted to and manage it through increased Lasix and more free fluids through his G-tube.  We were nervous about this because he got to 14.2 while home with us for just 2 days and a level of 15/16 is where they really become concerned and worry about being symptomatic.  We didn't want to have to worry about this so we decided to be admitted to get his calcium under control and well monitored.
 
Now that they could start on the admission paper work we discussed how to proceed with Seth's calcium management.  After a very lengthy discussion we came to the conclusion that his kidney needs to be removed, otherwise his calcium will continue to be a problem.  The hope is this will allow his electrolytes to regulate and remain in the normal range. 






We were transferred to the ICU Sunday night and after a week in the hospital Seth's right kidney was removed this morning. 

He was taken first thing in the morning and we got to see him about 1:30.  Dr. Weldon said he did great.  They would be keeping a close eye on him and his electrolytes to see how everything responds.

When we got to see Seth he was already awake and seemed to be somewhat comfortable. 

For now he has two peripheral IV's, an arterial IV, a catheter, and an epidural.  We're hoping to keep him as comfortable as possible over the next few days while he heals and until some of his lines can come out. 



The next steps in his treatment/care are still being discussed but we are working towards what's best for Seth and our family.

Sunday, July 16, 2017

Family Time and a Red Sox Game

Friday morning Seth has is PIC line removed and a port a cath placed.  We are excited for this because he will be able to bathe and swim and we won't have to be flushing it twice daily at home.  He was pretty tired afterwards, so much so that he slept in the crib!
 
 
 
After a long hospital stay we got discharged on Saturday. 

 
 
We headed home to have lunch and open Seth's birthday presents since we had to leave his party early last weekend.  Sadie was eager to help open the gifts. 



After opening all the gifts and putting Seth's bike together we all went for a ride outside.  Seth seemed to like his bike and Sadie was so excited for brother to have a bike too.
 
Someone had offered us tickets to the Red Sox game on Sunday so we decided to make it a family day and take the kids into Fenway for their first game.
 
We got there right after the game started and headed to our seats.  Sadie was excited walking through the stadium and they both sat for longer than I thought watching the game.  Seth was taking in the sights and Sadie was taking in the snacks!








Once they were getting a little restless and Sadie informed us it was too loud we walked around some more and over to the souvenir shop where Sadie picked out a pink and of course purple hat and Seth got a new onesie.
 
 
 
It was a good day in town that let us forget about everything else we have going on and the decisions we have to make.  Lot of appointments coming up this week to make a plan of action.  For now we're just trying to live in the moment and enjoy having everyone together.