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 …
 
 
 
 
 

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