Our Smiley Seth

Our Smiley Seth

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.

Monday, July 10, 2017

Unexpected Kidney Tumor

Monday morning after a rough night (I may have slept in the crib because we were in a double room and got a roommate) we anxiously awaited what the doctors would have to say as it relates to Seth's calcium.  It doesn't seem to be clear what is causing it to be so high. 
We spent a lot of the morning walking the halls and in the play room while waiting.  The doctors bumped into us in the hallway and we headed back to our room.  They said they still aren't sure what is causing the high calcium but he otherwise clinically looks well.  They will try to get as much testing done today to maybe avoid some appointments later in the week and hopefully we could go home later today and manage the calcium from home. 
Seth would be going for an abdominal ultrasound later in the day to knock that off the list later in the week.  They were also going to be discussing Seth with the endocrinology team to see their thoughts on his high calcium and how to treat it.
He went down around 1pm for his ultrasound.  We got a new roommate during this time so I met Seth and Steve on the 2nd floor.  When the ultrasound was over we all went to the cafĂ© to grab a quick lunch before heading back upstairs. 
We were in the playroom when I saw Dr. Wright and Dr. Eng.  I assumed they were looking for us because they were not covering the hospital this week and they were looking for a room to talk since we were in a shared room.
We went into a multi-purpose room and as soon as I saw they were waiting for Cori (a psychologist) I knew we were in for bad news.  I said "it can't be good news if Cori is here" and immediately started crying.

Dr. Wright explained that the ultrasound showed a large mass in Seth's right kidney.  This means this tumor grew through chemotherapy.  The chemotherapy that would have been used to treat this tumor had it shown in his initial examination.
How this tumor grew when the one is Seth's brain has responded so beautifully to treatment is mind boggling to us.  They believe it is not related to the tumor is his brain but a whole new growth of tumor.
This puts everything on hold for us.  Transplant is no longer an option because he is no longer with little or no disease and what the future has is unknown. 
The plan for now is continued testing to see what we are dealing with.  They need to see if the disease is contained in his kidney or has spread elsewhere and discuss with the surgical team what the best plan will be.  Right now we don't know what the future holds, there is a possibility that the disease has spread, and if that is the case it is unlikely Seth will survive.
For now we're asking everyone to be patient with us as we process the information we've received and think about what is best for our family as new information becomes available.

Sunday, July 9, 2017

High Calcium

Today is Seth's birthday party.  We're so excited!  I've been working hard to try and get everything together on short notice.  While Seth's party can't be as large as Sadie's was I wanted to make sure he still had a fabulous time surrounded by family and people who love him.
I spent a good part of Saturday night preparing so Sunday morning could be a little less chaotic. 
Around 9:45 I headed out to pick up the balloons (which were put in a bag - this is the best thing I've ever seen so I didn't have to battle trying to get them all in the car), cake, and cold cut platter.  When I got home the nurse was there finishing up Seth's labs.  She told us she'd be sending them to Winchester and wished us well in case she didn't see us before transplant since we would be in and out of Boston all week for all the appointments.  Sadie and I finished off putting up the decorations and setting up the outdoor tables and soon enough people were arriving.



I started off right away taking pictures with Seth because I didn't know how long he would last in his adorable outfit :)

About 20 minutes into the party we got a call from Boston Children's that Seth's calcium was still high and they wanted us to come in.  Steve told them we had just started his party and fortunately they said we could wait a few hours before coming in. 
That threw a wrench in our plans for the day but we adapted  and did cake with Seth firth and then just tried to enjoyed the remaining time we had at home before heading into Boston.

Thank you to all who came out to celebrate Seth on Sunday and sorry we had to leave the party early. 

For now we are waiting to see what is causing his calcium to be elevated.