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 :)

Happy Birthday!!

We aren't sure how it's possible but our little man is officially 1!  Seth looks pretty excited about it himself:

 

 

 

We spent the morning as a family at Parlee farms and enjoyed some strawberry picking, fresh strawberry donuts, and feeding the goats.  It was a little hot picking but it was really nice to be out doing something as a family.

 

 

Around noon time we enjoyed lunch, cake (Seth not so much see below) and presents.  We'll be having a small party this weekend to celebrate with our families.

We finished off the day with a family BBQ.

 

 

The next few weeks we'll have a lot of appointments in preparation for stem cell transplant later in the month.   So for now we're looking forward to more time at home. 

Golf Success

The Seth Bottari Invitational Golf Tournament was a huge success!  We can't say thank you enough to Eric who took this on in a very busy time in his life. We are so overwhelmed by all the love and support that was seen during the planning and on that day.

The kids and I would have loved to be there as well but were unfortunately unable to make it due to discharge, home nursing, and IV medication delays but, we can't say thank you enough.

More importantly we hope that all of you enjoyed a day away from work while hanging out with friends.

RIP Joe ... we love and miss you.

Seth can't say thank you enough!!!

 

Gut Rest & Line Removal

Tuesday Seth seemed to be doing a little bit better.  The white lumen of his central line still came back showing infection and if it wasn't cleared up with the cultures taken that day it would be removed on Wednesday. 

 

 

Later in the day Seth developed a new fever reaching 39.5 and was shivering again.  The doctors made the decision his line needed to be removed emergently because it was too risky to keep it in.  Steve called me after the decision was made and I rushed in to be there for the surgery which happened around 6pm.  He received platelets during ththat timeand when we were back in the room he also received a blood transfusion.  Seth came out of surgery with 4 IV's, one in each hand and foot, so they would have enough access to give him everything he needed and just in case they lost one. 

 

 

 

 

 

It was so sad to see him like that and he was pretty miserable.  I decided to stay over night and how things went in the morning and see what the team had to say. 

 

 

Wednesday morning Dr. Chi rounded and while Seth did look much better since the line had been removed we discussed how quickly we could get the PIC line placed because he was just miserable with the 4 IV's.  Thank goodness for the PCA of morphine which helped Seth sleep through most of the days until the PIC line could be placed. 

 

 

Thursday morning Seth was scheduled to have the PIC line placed but fortunately for him someone cancelled even earlier and he was taken first thing in the morning.  It's always hard being away from Steve and Seth when he needs these procedures.  Luckily, this was done with mild sedation and in a procedure room rather than in the OR.  His ANC was 530 when taken in the morning so he was just on the cusp of becoming neutropenic. 

 

 

 

Friday after work I headed into Boston to trade places with Steve.  Before arriving they had shut off Seth's continuous morphine drip because he had decreased the amount of button pushes he needed and didn't require any during the day either. 

 

Saturday morning his ANC was 12,660!!!  He really just jumped right back up, we're not sure he was every really considered neutropenic this round.  His PCA for morphine was also taken down completely.  While he was feeling better he was still on gut rest so we just enjoyed a day of walking the halls talking to all his ladies (the nurses), napping, and playing in the playroom.  He is considered the mayor of 9N at this point and everyone stops to chat with him. 

 

 

Sunday was more of the same and we got a visit from Steve and Sadie before swapping places again.

 

 

 

It wasn't until Tuesday that Seth finally got to start slowly receiving pedialyte through his G tube.  He did well with that and on Wednesday they started a combination of pedialyte and formula and Thursday he was up to full strength on his formula.  We're still working on bolis vs. continuous feeds and how much to give over what amount of time but overall he's doing fairly well tolerating his feeds.

 

 

The next steps for Seth's treatment have been a moving target it seems.  First we were going to continue on with chemotheraphy skipping to week 27 of the treatment plan because 19 and 23 haven't shown to be very effective with AT/RT.  Then we were waiting to hear if neurosurgery would be operating again to remove the last portion of the tumor because transplant would like no signs of disease before moving on to transplant.  Finally, Thursday late afternoon it was decided that Seth would be moving on to stem cell transplant.  After transplant Seth will continue on with the maintenance portion of the protocol.

 

 

 

A lot of things are going to have to happen over the next few weeks in preparation such as an MRI, numerous blood tests, a lumbar puncture and many follow up appointments at the clinic.  Right now Seth is tentatively scheduled to begin the process the week of July 17th. 

 

 

Before heading home on Friday a friend from high school and her family stopped by to say hello.  Her son has been through the At/RT protocol and they were in town for an MRI and follow up at the clinic.  I was so happy to see them and finally catch up.  We've been emailing back and forth but it's not the same as seeing someone face to face.  I wish we had more time to chat and just talk but they had to get to his appointment and we were headed home.  She's been such a good resource of information/experience, ear to listen to grievances and wins, and just overall huge support.  I'm so happy we finally got to see each other even if it was for a short time.

 

The nurses and staff of 9N gave us a bubble send off because unfortunately transplant happens on the 6th floor.  We are going to miss them during that extended stay for sure!!!

 

For now we're headed home and looking forward to spending time as a family and celebrating Seth's birthday!  Can't believe the little man is going to be ONE!