Our Smiley Seth

Our Smiley Seth

Friday, February 10, 2017

Week Two

Seth started week 2 on Friday with Vincristine.  Luckily, this only runs over 5 minutes and will give Seth some time to deal with some of the side effects from the other chemotherapies he received last week.  He is still spiking fevers here and there and his appetite has been hit or miss.
I came back to the hospital Saturday to swap places with Steve.  We were looking forward to having a little family time all four of us but while Sadie was at swimming with Gramma and I was packing everything up to go Steve called and told me the doctors said it wasn’t a good idea to bring Sadie in.  I was devastated.  I had been telling her for a few days we were going to visit with brother and we had gone to the store on Friday together to pick out a few new toys for Seth, we had drawn him pictures and Valentine’s to decorate his room and stocked up on lots of baby food for his eating pleasure when his appetite comes back fully. 

The cold never stops Sadie from riding
the ponies outside Market Basket.

Playing in the snow before receiving
the disappointing news.
To say I was upset is an understatement.  We were all looking forward to some time together and it broke my heart that Sadie wouldn’t get to see Seth.  None the less I managed to pack up the car and be on the road before Sadie got home from swimming.  Steve and I had a quick hello and see you later in the hospital round about while I loaded up the wagon with our supplies. 
Saturday Seth and I cuddled for most of the day.  I missed my little guy and snuggling.  It was a pretty low key day where the only thing on the docket was his continued anti-nausea meds and GCFS recovery shot.  Dr. Kieran came in and we chatted for a while.  He brought up the idea of the NG feeding tube again and said that it may be soon because he hasn’t been eating much and when he did he was vomiting most of it up.  Surprisingly he ate well for me for the rest of the day but we sort of knew that was going to be part of the process it was just a matter of when.  I of course had forgotten my Tami Flu at home so Philip was kind enough to bring that in for me.  We had a good visit and he got some good smiles out of Seth 
Sunday was another low key day that consisted of just cuddling and trying to make him as comfortable as possible.  Dr. Kieran came in during rounds and said his counts were practically zero and he’s now officially neutropenic.   He said his blood counts were also getting low and he will most likely need a blood transfusion within the next few days.  Sunday was a rough night.  He couldn’t seem to get comfortable unless he was sleeping on my chest and the few times I managed to get him sleeping in the swing always happened to coincide with the necessary vital checks.
Feeling a little happier :)
Monday morning I was woken around 5 (after being up numerous times during the night with Seth – I would kill to sleep until 5!) with the news his blood counts were low and he would be getting a blood transfusion shortly.  Anyone who knows me well knows that I don’t do anything related to blood very well.  I have prepared most of the nurses along the way with the daily bloodwork about having to just sit on the couch until it is all done.  One time I did attempt to be brave and stay with him and ended up laying on the couch feeling faint!  For the transfusion Seth had to remain in the crib which is tough because he’s been getting more and more uncomfortable.  The nurse got him all set up and nicely put a pillowcase at the top of the IV tower so I couldn’t see what was hanging there.  I arranged his blankies in the crib so most of the tube was covered and we hung our together.  He managed to stay quite still for the two hours it took.  He even fell asleep for a few minutes in the crib which doesn’t happen very often.  As the day went on it was becoming quite clear that he was just really uncomfortable.  He wouldn’t eat anything and the only place he was happy was sleeping on my chest.  When the oncology team came around I mentioned this and they said he’s probably starting to develop the mucositis (basically sores all throughout his GI tract) from the chemotherapies he had last week.  His bum has also been really sensitive and he’s been screaming through diaper changes.  I asked if there was anything we could do at least to help him sleep at night.  The nurse ordered him some morphine and a cleanser and aveeno oatmeal treatment for his bum twice a day along with a good ole helping of desitin at every diaper change. 
One high point for today was the life support team came in and took Seth's footprints and made the cutest little Valentine for me to keep.
I was so happy when I saw our favorite night nurse Laura was covering Seth.  She came in around 8pm and asked if it was a good time to try the cleansing of his bum.  Sure why not!!! She came back around 9 with all the supplies and we started.  First an astringent is used to cleanse the area.  It sits in his diaper for about 20 minutes.  That is cleaned off and the aveeno oatmeal paste is applied to the irritated area and allowed to sit for another 20 minutes after that was all cleaned up we got ready for bed with some meds and a little morphine to help him get comfortable and get some good rest.  Luckily we were both able to get some good rest because Laura is amazing!
Tuesday morning around 3:30 Seth was fussy.  I held him for a while until he settled down and fell asleep before placing him back in the swing where he slept for about an hour before waking up clearly uncomfortable.  We called Laura for another dose of morphine and we both slept until 8am!!!  Today is Valentine’s day and I really wanted to get Seth’s picture done in his cute onesie before he got his NG tube placed but he was so uncomfortable I couldn’t bring myself to move him for changing once he settled down.  The nurse for the day explained the tube would be placed shortly.  Three other people arrived to help with the placement and I left the room and called Steve.  When I came back Seth didn’t seem too irritated but he was kind of rubbing at his face. 

Can't forget my other
little Valentine :)

Blown in oxygen is a fun toy!

Oncology came by on their rounds shortly after saying that Seth is in the thick of it now and everything he is presenting is normal and to be expected.  The goal now is to try and keep him as comfortable as possible.  They also mentioned some kids will pull out the NG tube and not to worry because they can be placed again.  Well he lasted a few hours before ripping it out!!! 
The one eyed love bandit :)
A new one was placed this afternoon after giving him a little break.  I know he’s hungry because I can hear his stomach grumbling.  Maybe once he realizes that  tube provides food he’ll leave it alone. He's getting his first feed right now so fingers crossed this one sticks!!
Hoping he keeps this one in and
gets the nutrition he needs.



  1. �� Your little Seth is so handsome.

  2. Thank you for posting the blog and pictures. Sending lots of healing wishes!
    Jay & Kevin Lordan

  3. I cry so much everytime I read about Seth's progress / treatment.
    Stay strong ❤❤❤❤