Our Smiley Seth

Our Smiley Seth

Monday, May 22, 2017

Week 13


I got a call from Dr. Wright late Monday morning asking if we wanted to postpone Seth’s clinic visit.  She would didn’t want us to come in for blood work only to have to go right back home.  The visiting nurse did labs on Saturday and his platelets were 71 and ANC 950 and they need to be 75 and 1000 in order to start his next round so we rescheduled for Wednesday and to give his counts a few more days to come up.

Wednesday morning we packed up everything anticipating he would be admitted and begin his next round.  Traffic was awful but we somehow managed to get there on time for our appointment at 9:45 even with the usual diaper explosion to clean up before heading in.  Seth did enjoy his first ride to clinic in his big boy car seat.
 

We checked in and were taken back shortly for vitals and blood work.  Dr.  Wright met with us afterwards, his chemistries had come back and all looked great which is awesome because we’ve been watching those closely and he’s been border line low most of the time.  Unfortunately, the CBC was not back yet and those were the numbers we needed to know if Seth would start chemo today and be admitted.  Dr. Wright went to check in with the pharmacy and after some time came back and explained the machine was broken and there were 40 patients currently being held up because of the machine being down.  This is one of those things that makes you go “huh?”  A leading Boston hospital only has one of these machines and there’s not a local hospital that these labs could be sent to instead while the machine is fixed?  At any rate, we decided to go grab lunch and she said she would call us if they heard anything.  We waited quite a while before hearing anything. 
 
 
 
 
The results were finally starting to come back slowly and we found out his platelets were 170 so they would move forward with his intrathecal chemo.  They were still waiting for his ANC but she was confident it would be high enough because of where his white cells were.  We waited in an infusion room and he was given some pain medicine and Ativan to help keep him relaxed and sleepy during the procedure.  Around 3pm he was taken back to the procedure room to have the intrathecal.  Unfortunately, he was wide awake and ready to party so the nurses were going to have to do some work keeping him still for Dr. Wright.  About an hour later the nurse brought us back to Seth.  We headed back to our infusion room where he finished up some fluids he had started previously and waited for a room over at Children’s.
 

About 5:30 we were sent over to Children’s.  Unfortunately, the 9th floor where we usually go was full so we were headed to the main oncology floor.  I was a little hesitant because we love our nurses and have gotten used to the way things work up there and they all know how Seth operates as well.  I was pleasantly surprised when we arrived and there was an additional bed/gurney in the room for me to sleep on.  A little bit of an upgrade from the flip out “sofa” we usually get.  We got the nurses up to speed on his meds and what he needed to get right away.  They continued to keep up with his fluids.  We still didn’t know his ANC so whenI went to grab dinner Steve asked the nurse, it was 1150.  Both Steve and I were surprised it wasn’t up more and I was happy we didn’t come in Monday as planned because there’s a good chance we would have been sent home.  Steve left shortly after having dinner and Seth was rather tired and fell asleep about 7:30.  I checked in with the nurse and his chemo wouldn’t start until about 10:30/11 so I went to sleep as well. 

This round he will receive Vincristine – 5 minutes, Doxorubicin – 2 days continuous, Cyclophosphamide -  3 days continuous, and Leucovarin a pill crushed and given through his G tube one day after his intrathecal.  The Doxorubicin and Cyclophosphamide are going up in strength from the previous rounds he’s had so I am a little nervous to see how he handles everything.  Last time, he had the Doxo he had terrible mouth sores and sluffing and I just hate seeing him suffer but we’ll have to wait and see how this round is tolerated.
I've had a lot of people say he's always so happy and really doing well during all of this.  And yes he is a trooper but there are plenty of times where is doesn't feel well at all and is very uncomfortable like he is here:
 


 
We try not to dwell on these times and cherish the times where he is smiley and not feeling totally awful.
 
We spent a lot of time playing in the playroom this admission.  One benefit of being on the main oncology floor rather than the neuro floor is that everyone is getting chemotherapy (sad that is a benefit I know!) so each parent can relate to what you’re going through and it was nice to talk to them and hear their stories.  There were also some kids Seth’s age that we saw when walking the halls in the Baby Bjorn (which we did A LOT of) and in the play room as well. 
 
 
 
 
It was nice to see him interact with some other kids around his age even though they couldn’t play and share too much because we have to be careful of germs.  This floor seems to have a lot of things to offer the patients and their family which included days where they offered subway lunch, a sundae bar, a memorial day BBQ and my favorite a short chair massage for the parents.
 
 

Seth tolerated this round rather well and we were still on plan to be discharged Sunday.  He is still receiving both magnesium and phos nak which cause diarrhea.  Unfortunately, that has been the case since he started his first round.   We definitely keep the Desitin, Aquaphor, and Zout companies in business!!!  He did get sick a few times during the chemo so we put him on a lower continuous feed to try and cut back on the nausea but overall he did really well during this admission.
 
 
 
video
 

Sunday came and it was time to get discharged.  He had finished his chemo in the wee hours of the morning and sleeping didn’t seem to be something he was interested in unless he was being held by me.  Seth was going to get a blood transfusion to give him a boost before heading home.  That started about 6 am and ran a little after 9am.  I did have to inform each nurse on the floor of my blood phobia which I always feel a  little ridiculous having given everything Seth is going through and all the blood related things he needs done but they are always so grateful I told them because they don’t want to have me fainting or getting sick too.  I am getting a little better, they still cover the main IV pole but I maneuver much better holding Seth and with the tubing being exposed.

Discharge took a little longer than expected because there was a misunderstanding when it came to Seth’s recovery shot.  Unfortunately, it wasn’t refrigerated as needed so we had to wait for another to be brought up from the pharmacy.  Around 3pm we were heading home.
 

We don’t have to worry about coming in the next few weeks for his 5 minute Vincristine like we have with each of the past rounds.  Now we will enjoy time at home as a family.  VNA will come Monday and Thursday each week to draw labs and we will wait for them to tell us he needs to come, a fever, or bad side effects that can’t be managed at home.

For now it’s trying to enjoy the time we have together …
 
 
 
 
 

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.