Our Smiley Seth

Our Smiley Seth

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.

Saturday, July 8, 2017

Smash Cake

Unfortunately, we had to reschedule our smash cake and family photo session with Seth due to the line infection.  We weren't able to use the original photographer due to scheduling conflicts but were fortunate enough to find another one who squeezed us in. We can't say thank you enough to Amy for the amazingly beautiful and delicious cake and Through My Lenz Photography for squeezing us in at the last minute! 
I think we got some good shots and I love them!!