Our Smiley Seth

Our Smiley Seth

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!!


Friday, July 7, 2017

Stem Cell Discussion

Today we had a lot of appointments in Boston in preparation for stem cell collection which is schedule to begin July 18th.
We started out at the Jimmy Clinic for labs and a discussion with Dr. Lee who is the stem cell transplant doctor.
We had a long discussion about the process.  It will start with 8 days of high does chemo that is then followed by autotransplant, which is the giving back of his own stem cells to help his immune system to recover.  It was explained to us that this chemotherapy is 3-5 times stronger than what he has received in the past and without stem cell transplant his body would probably never recover.   This treatment does not come without it's hardships as well.  He will not be allowed visitors for 60 days while his body recovers, he will most likely be unable to have children, his hearing could be effected even more, possible minor kidney injury, not being able to have bandages because one of the chemos doesn't allow for it and requires a daily wash down, and mucositis just to name a few.  While this information is extremely scary for Steve and I to hear as parents we know that this is Seth's best chance at fighting off the small amount of remaining disease.
He will likely be hospitalized for 6 weeks as a result of the transplant process but our hope is that at the end he will show zero signs of disease.  That is what keeps us going through all of this, hoping that in the end he will be disease free and can live a "normal" life.
After our meeting with Dr. Lee we went over for a dental exam.  Yes a dental exam on a 1 year old is as silly as it sounds.  Seth did relatively well and they just suggested we start brushing his teeth twice as day but he looks really good. 
While at the dentist we got a call from the clinic that his calcium came back really high and they would like to do repeat labs.  We headed back over to the clinic to have those drawn quickly before heading to our next appointment.  Eliza, Seth's usual nurse was kind enough to give Seth a birthday card signed by all the nurses as well as a very nice train and airplane.
Audiology was up next and we had to head across the street for this.  All his prior audiology appointments have been done asleep and this was the first one that was schedule to be awake.  They did some quick testing that they've done int he past and then tried some additional booth testing that they didn't think proved to be diagnostic.  Seth did look tired so I rocked and bounced him until he was asleep and we got to test his right ear.  When trying to switch for the left it just didn't work out with him staying asleep.  She said with the testing done in previous sessions, the quick testing they did earlier, and now the testing on the right ear today it seemed as though Seth has lost some more hearing of the higher pitched tones.  We can't know for sure because he can't tell us or show what he hears but it's something we will have to follow up on and have checked as we move through the process.
While Seth and I were in the testing booth Steve got a call from the clinic saying we needed to come back over.  Seth's calcium was still high and he would receive a bag of fluids before heading home.
Our last appointment of the day was an echo.  Seth was less than cooperative with the ultrasound tech trying to get the images they needed but we did our best and moved on to the clinic.
Seth received fluids over an hour.  We discussed changing his formula back to Gentle Ease from the Peptide he had been switched to not too long ago for the weekend and we would reassess on Monday during our clinic visit.  The Peptide contains  little more calcium and they wanted to see if that would make a difference.  VNA would also come to the house on Sunday to draw labs as well to see where he was. 
For now we were off to enjoy the weekend at home which includes Seth's birthday party :)