Our Smiley Seth

Our Smiley Seth

Friday, May 19, 2017

Fun Weekend

This weekend Uncle Jason and Emily are getting married.  We had their wedding rehearsal on Friday night and Sadie did really well. 
 



 
 
Saturday we had a fun filled day with dance, the last swim lesson of the session, and soccer practice. But we started the morning with some playing outside and breakfast made by Dada.
 






 
 
Seth's labs were also drawn in the morning and we found out his ANC was 950 and platelets were 71.  We're heading in the right direction but I'm not sure he'll be ready to start on Monday.  We'll have to wait and see.
 
Sunday was the big day.  Sadie was finally going to get to be a flower girl and wear her beautiful dress.  She had such a good time getting her hair done and getting all dressed up. 
 

Even though she didn't want to walk down the aisle or into the reception smiling and wasn't a fan of Pat the Patriot at all I think overall she did really well and had some fun. 
 







Congratulations Uncle Jason and officially Auntie Emily!
 
 
 
Seth was home having some fun with Gramma.  What's more fun than playing with your G tube syringes!!
 
 
 
 
 

Monday, May 15, 2017

Week 12

Seth was starting to look a little better even though his ANC was low at 10.  His platelets were at 51 which is good and means they are hopefully started to trend up!  His magnesium which we've been watching closely was at 1.4 so he was given a bolas of magnesium to help give him a boost.  He's been doing well holding down the continuous feed that we decided to start him on bolas feeds again in the late morning.  We had a scheduled well appointment with the GI team today that unfortunately got rescheduled.  I was hoping since this is the second time his site had become irritated we would get to see them and follow up but sadly we couldn't.
 
 
 
We did a lot of just hanging around on Monday however he did get his Vincristine as well as his Intrathecal chemo through his ommaya that he did amazing at.  Dr. Wright said he didn't even move this time so it went so quickly.  Unfortunately, he did get sick not too long after starting his third bolas feed of the day so we gave him a break and put him back on continuous for overnight.
 

With his numbing cream before and then his Band-Aid after his intrathecal chemo.
 
Tuesday morning his platelets were 47 and his ANC was 20.  After talking with the doctors as well we started bolas feeds again.  The vomiting yesterday could have been from just having the intrathecal not too long before he was hooked up to his feed.  He's looking a lot better but we're still going to keep him at the hospital and hope those counts come up a little more and keep his antibiotics going to help his G tube site heal.  He did get to have some physical therapy today which seemed to tucker him out!  We're trying to get him to use his legs a little more and also get back to rolling but he really avoids being on his belly as much as possible.  We can't really blame him with all of his accessories as well as the G tube site being irritated a lot of the time.
 
Unfortunately, I had an evening work commitment so I had to head into the office Tuesday night and Steve came to stay with Seth.  There was talk of him potentially coming home Wednesday so I hated to leave with possibly only one more stay but it worked out because Seth didn't come home until Thursday. 
 
The plan is to have his numbers checked on Saturday and see where he is and come to clinic on Monday for another lab check and possible admission to start week 13 if his numbers are good.
 
We can't forget our favorite girl who was so lucky to go to Gramma's beach house during the beautiful weather and play at the beach.  I was really jealous when my mom sent me this picture but so happy that Sadie gets to enjoy some fun in the sun!
 
 

Wednesday, May 10, 2017

G Tube Irritation

Wednesday afternoon Steve noticed that Seth's G tube site really didn't look good.  He put a call into the doctors to see if we needed to bring Seth in to be seen and start antibiotics.  After sending pictures he was told to mark the outer edge of the red area and if it spread past that in the morning to bring him in. 
 
Thursday morning it didn't extend past the pen mark but it didn't look right with a lot of leakage and puss so he sent more pictures to the doctor and we were told to bring him into clinic.  I left work to pick up the boys and we headed in.  After having labs drawn we found out his ANC was 280, platelets were 15 and his hemoglobin was 7.8.  He would need to transfused for both blood and platelets.  We spoke with the doctor and made a plan to just be admitted that day since he was probably on a downward slope and better to be in the hospital. 
Family nap time while waiting for his room.
Seth must have known because he spiked a fever while we were waiting for his room to be ready over at Children's.  Fortunately, we had made the plan to stay.  So thankful because I would have hated to get home only to turn right back around with a fever and being neutropenic. Due to the fever he was also given antibiotics and cultures were drawn to check for infection. 
 

 
We headed over to our room at Children's about 5:30.  We got settled in and had some dinner before I headed home.
 
Friday morning Seth's ANC was 150 so we were still trending down.  They decided they wanted to do an X-ray of Seth's stomach to make sure everything was ok with the G tube.  Fortunately, that came back clear.  Seth has been having trouble holding down his feeds while home and it had gotten a little worse after being admitted so he was put on continuous feeds which is a little easier for him to handle.
 
 
 
 
Saturday ANC was 30 and Sunday 10 with low platelets so he received a platelet transfusion.  Sunday was Mother's Day so Sadie and I went out for breakfast with my mom before heading in to visit with the boys and so Steve and I could trade places.  Even though most of the day was spent in the hospital seeing these two so happy together makes it that much sweeter.
 


 

Monday, May 8, 2017

Week 11

We headed into Boston around 10:30 Monday morning for Seth's weekly appointment and his Vincristine.  Vitals and labs were done quickly and a dressing change because it was starting to lift.  We met with the doctors and Seth's hemoglobin was 6.5 and platelets were 18 which meant he needed a transfusion of both in addition to his chemo.  Fortunately, this chemo only runs over 5 minutes however, the clinic technically closes at 6 and the blood transfusion should run over 3 hours and the platelets over 30 minutes so trying to get them all in was going to be tricky including time for the orders to be placed and fulfilled.  It still blows my mind that things like this can occur at a leading treatment facility at any rate the plan was to run the platelets, chemo and then the blood transfusion.  We could transfer to the emergency room if we wanted to complete everything but the doctors ensured us he should receive enough before closing time.  
 
We also discussed Seth's magnesium levels because we have been watching those closely as he needed IV mag in the past.  He was on the low side of the scale at 1.1 so we'll increase his dose and hope it doesn't cause too much more poop.  It's a balancing act because he needs the magnesium but it can cause diarrhea which includes the magnesium being released.  So we'll see how he does over the next few days with the increased dose.  The plan is to have VNA come Thursday to do a full lab workup and we'll see if he needs any further transfusions or IV magnesium as a result.  We won't be surprised if he needs either because the last round he got both.
 
We headed over to the infusion room to get things started.  Here is Seth keeping busy during his blood transfusion.
 
video
 
He was shut off about 6pm and we were headed home.  We'll see how he does over the week but we'll hope to be home until Monday when we go back for another round of Vincristine, intrathecal chemo, and a follow up with the GI team.
 

Monday, May 1, 2017

Week 10

After having a week home with Seth we headed back into the clinic Monday morning.  The last few nights home were really hard.  He was up multiple times during the night and we had a really hard time getting him to settle down.  We were kind of glad to be heading into clinic today to figure out if maybe he needed blood and that is why he was so fussy.  I never heard from clinic about what time our appointment was so we headed in around 8:30 and would just hang around if needed.  I called on the ride in and we were scheduled for a 10:15 arrival time so it's a good thing we were already on our way.
 
We checked in and Seth was taken back for vitals.  Eliza our usual nurse said she could probably take us early because she didn't have anyone before our scheduled time with her.  I asked if we would need to do blood again today since he just had it yesterday with the visiting nurse and it was faxed over.  She went looking for it and unfortunately it didn't have the extended testing for magnesium and phosphorus that we need so he had it done again along with his caps being changed. 
video
How we keep Seth occupied in the waiting room.

We then met with Dr. Eng and Dr. Chi and talked about how Seth was feeling and told them how he was really cranky and had a few really tough nights.  All of his numbers looked good and his platelets were 172 so we were able to start his week 10 course.  We headed back out to the waiting room because an infusion room wasn't ready for us yet.
 


 
 About 3pm we were brought back to a room where he was started on IV fluids.  Later he would start the Vincristine and then the Cisplatin was hung right before our nurse from 9NW came over to get us.  We got Steve and Seth settled into his room and hoped for a pretty low key admission.  This round of chemo is similar to week 7 and Seth handled it pretty well so we're hoping for the same.
 

 
 
Steve met Kate the NP on 9NW Tuesday and told her about how fussy Seth was.  We accidentally had left one of Seth's anti nausea meds out of the fridge and couldn't use it anymore.  We had switched him to another one to cover for it but unfortunately coming off the other one so quickly could have been what caused him to be so cranky the last few nights.  We won't make that mistake again and at least now we know there wasn't something else wrong.
 
Seth went in for intrathecal chemotherapy on Wednesday and did great despite being very delayed in the scheduling. 
 
 
 
Thursday Seth finished up his chemo in the wee hours of the morning and also got some IV magnesium to help get him through the weekend.  I headed in to pick them up around noon time.  Traffic was terrible but it made it a little easier for pick up since I could just get them at the door rather than paying for parking.  We were home for the weekend and will head back in on Monday for his short Vincristine treatment.
 
We enjoyed the weekend at home as a family.
 

Out for a walk with Sadie and her snuggie tail the night before the boys came home. 



 
Seth turned 10 months over the weekend 😁