Our Smiley Seth

Our Smiley Seth

Monday, April 17, 2017

Week 9

We headed into Boston early Monday morning as planned to avoid as much Marathon traffic and road closures as possible.  Unfortunately, Seth had a temperature in the morning of 100.6 so we knew he was most likely going to need antibiotics in addition to the planned platelets.   We packed up the kids and headed to my parents to drop Sadie off.
 
Due to his fever I called the doctor on the way into Boston to see if they wanted us to head to the clinic or the emergency room.  As suspected we were headed to the emergency room.  Luckily we flew right in, the best time we've ever made and the emergency room wasn't busy at all.  We got signed in and when they took his temperature it was even higher.  They took more blood for testing as well as blood cultures and things were getting started.  His platelets were 21 which surprised us since they were 11 the day before and his ANC was 350 which was also a nice surprise because his counts were already on the rise!  In the ER they started his antibiotic and gave him Tylenol to get his temperature down.  I was anxious to get to our usual floor because they know us and Seth and his usual routine.  We made it up about 11am and finished his antibiotics and got started with his nausea medicine routine.  Unfortunately he did get sick while we were in the ER so we were anxious to get those meds going again. 
 
Getting settled in on our usual floor.
 
I was planning on staying this admission so Steve and I had lunch together he and headed out around 2pm.  We decided to have him take the T to his mom's house rather than navigating through all the road closures so he could get home to have cake with Sadie for his birthday.  Seth must have been really tired after Steve left because he took a nap in the crib!
 
 
Later in the day Seth received his blood transfusion because his hemoglobin was only 6.8 in his morning blood work.  He seemed to perk up after, get some better coloring in his lips and cheeks and was playing with his toys.
Finishing up his transfusion.
 
Seth had a good night Monday only waking up once during vitals and a diaper change and settling back down pretty quickly.  Tuesday morning his ANC was a little over a 1,000.  This was great news.  The last two rounds he spent 7-10 days hanging around 0 so I was so happy to hear that he was on the rise again and was officially not neutropenic.  His platelets were 29 which isn't bad but in order to do the intrathecal chemotherapy they need to be 50 or above so there is a possibility of a platelet transfusion in the next few days.
 
Seth did get sick in the morning after receiving his magnesium.  Dr. Chi and Kate rounded later in the morning.  He will be getting his Vincristine later today and the hope is to either tap rickham Wednesday or do a lumbar puncture Thursday to give the intrathecal chemotherapy.  Dr. Chi explained that the fluid collection made it difficult to see where the rickham actually was and she didn't want to administer the chemo in the wrong place so we will have to see how it looks Wednesday.  I asked if the fluid collection is going to come and go as it has been will they most likely be doing lumbar punctures for all his intrethecal treatments?  Basically asking why did we place the rickham if we aren't going to be able to use it? After all this is hardware that's going to be in his head forever.  That will take time to see but that question will continue to be asked as we move along.  They can also ask neurosurgery to assist with finding the correct place to use the rickham and she will reach out to neurosurgery to make them aware.  The plan is to also have audiology come by for another hearing test.
 
 
He received magnesium later today via IV because his levels are still on the low side.  His fevers have been up and down so we'll continue to watch those and see what they do.  He does have to be fever free to 24 hours before heading home so we'll see what happens.
 
His Vincristine should be given overnight tonight and tomorrow should be a low key day.  I did ask about setting up some OT and PT for Seth since he doesn't seem to use his legs very much so that consult should happen tomorrow along with the attempt by audiology for an updated hearing test. 
 
We'll have to wait and see how the fluid collection looks but I have a feeling we'll be doing a lumbar puncture Thursday to administer the intrathecal chemotherapy as long as he doesn't have a fever.  Hopefully we will be able to go home after that for the weekend before returning Monday for his next big round.

Sunday, April 16, 2017

Easter Weekend

Seth ended up in the hospital Thursday night for low magnesium.  He had an overnight stay and was given magnesium, platelets, and blood in order to try and get him through the weekend and to our next scheduled clinic visit on Tuesday.
 
Thanks to a beautiful weekend weather wise we enjoyed the being outside and had lots of family time.










 
Sunday was Easter and leading up to it we weren't sure if Seth would be home to celebrate with us.  Fortunately he was!!  Although he wasn't feeling fabulous and was a little cranky it was really nice to have him home to do baskets and the egg hunt with Sadie.  Even if she did find all the eggs!!
 





 
We weren't sure if Seth was irritable from having low platelets, blood, magnesium or any other slew of things that could just make him feel yucky.  We put a call into the doctors and scheduled the visiting nurse to come out and draw labs to see if we needed to head into Boston.  We were trying to avoid going in on Marathon Monday.  The visiting nurse was heading out around 2pm so Sadie and I headed to my parents to have Easter dinner and the boys hung out at home.  It was disappointing they couldn't come along but we were happy to have Easter morning together and we brought left overs home.
 
On the drive home from my parents I got the call that Seth's platelets were 11 and he would need to head into the clinic Monday for a transfusion. Just what we were trying to avoid.  At any rate we will be heading in bright and early tomorrow to try to avoid traffic and all the closed roads.

Thursday, April 13, 2017

Scoops for Seth

My colleagues were so generous to throw a fundraiser for Seth at work.  They put together an ice cream social called Scoops for Seth.  Boston Bean who supplies the officescoffee even brought in a keg of cold brew coffee and coffee cakes for the office to enjoy and raise more money for Seth with Sips for Seth.  For a complete stranger to notice the poster in the office and want to help was really amazing. 
 

Fortunately, Seth was home today so I was able to attend and Steve and Sadie met me there as well.  I was so overwhelmed with the amazing raffle baskets people put together as well as the head Chef in the cafeteria downstairs.  People from other businesses and buildings in the Wall Street area even came over to enjoy some ice cream and get in on the amazing raffles.  The hot ticket items were the Kate Spade bag and Red Sox ticket bundles.  Awesome right!?!?!?
 
 
Sadie really enjoyed pulling some of the winning raffle tickets as well as pulling all the post it notes apart in my office (thanks Laurie!). 
 
 
 
Unfortunately, Seth was not well enough to attend the fundraiser like we hoped.  I consider myself someone who stays under the radar and isn't known by all throughout my company so to have so many come together to support my family was truly special.

Thank you from the bottom of our hearts.  The amount raised was above and beyond anything we could have hoped for!

Wednesday, April 12, 2017

Week 8

Seth came home late last week and we've been enjoying time together as a family.  His G tube is working out well for feeds and giving his meds.  He has been tolerating everything pretty well and only gotten sick a few times.  He does still have some serious poop power and we go through a lot of outfits a day and a LOT of Zout (my favorite stain remover spray).
Getting settled in at home.



 
Enjoying some nice weather outside.
Sadie enjoying an Easter egg hunt and loving her Kitty face.

Monday we had our weekly clinic day.  Seth was schedule to have his Vincristine and also have the first intrathecal chemotherapy through his new head reservoir.  We headed out early as we always do for the day to make sure we were on time.  His first appointment was at Children's to have his G tube checked and make sure everything was healing up nicely.  Fortunately, everything is looking great.  We have to keep taping it for a total of 6-8 weeks to make sure it heals up well and doesn't fall out during that time period.  After that we can stop taping it all the time which will be nice to give him skin a rest because he has such sensitive skin.  The nurse also showed us how to check the water level of the balloon each week.  This is very important because this is what keeps the tube in his stomach.  Fortunately, it's not too hard and we use some of the same supplies we're already familiar with to do it.  We will have another follow up at 12 weeks to have the tube replaced, which will be done every 3-4 months.
 
There was a good 3 hours in between his GI appointment and his scheduled clinic time so we took a little walk outside because it was a beautiful today.  Crazy how we had a blizzard last week and it's nearly 80 degrees now.  Gotta love New England! 
 
A few hours later we headed up to clinic and Seth's vitals and blood were drawn.  Funny how the staff there now know that I hang in the waiting room when his blood is being drawn and come get afterwards.  While waiting for those results we met with Dr. Eng and Dr. Wright.  Overall Seth is looking really good and we were looking forward to start getting caught up on his intrathecal treatments and use the reservoir rather than having to be sedated.  We were planning to send Seth back with the doctors and nurses for the procedure because he does have to be held still to access the port and the chemotherapy is then pushed manually over 2-5 minutes.  I've been a part of procedures/tests where he has to held down to remain still and it's awful.  I hate seeing him upset and as much as I don't want to see him like that I know it's going to help him in the end.  I'll be happy to swoop him up afterwards to assure everything is going to be alright rather than being a part of the holding down.  After talking with the doctors we headed out to the waiting room while the chemo's were put together.
 
Playing with toys while we wait.
 
 A little while later both Dr. Wright and Dr. Eng came to talk to us in the waiting room.  His platelets were low and at 19.  According to the protocol Seth couldn't receive the intrathecal treatment when they were so low, they need to be at least 50.  We had a few options: he could receive a platelet transfusion and push forward with the intrathecal knowing there is a risk of bleeding, receive a platelet transfusion and come back tomorrow for the intrathecal, or receive the platelet transfusion and just wait until next week for the intrathecal.  We are already so far behind with this portion of his treatment we hated to wait but also didn't want to risk additional bleeding and possibly damaging his new reservoir so we opted to have platelets give today and return Tuesday.  We headed back to an infusion room and waited for the platelets to arrive.  About an hour later Seth was receiving the platelets and when those were done running he received his Vincristine.
 
Mama enough with the pictures, just let me get my platelets.
 
 
It was a long day leaving the house at 7am and not returning until close to 7:30pm. 
 
Tuesday morning I headed to work and Steve took Seth into clinic with his mom for treatment. 
Playing together before heading to clinic.
 
Around 1:30pm I got a call that his platelets were 9!  What?!?!? He just got platelets yesterday and now they are lower than before?  Ugh, this little guy just can't catch a break!!!  So more platelets were on the docket for today and again the intrathecal would be postponed. 
 
 
Steve was given options of coming back tomorrow to be checked or waiting until VNA comes to the house Thursday to do his blood work and see where he is.  Again, because of the high risk of bleeding and bruising and knowing that in past rounds he's needed both platelets and blood transfusions regularly as well as Dr. Wright mentioning she thinks he going to drop within the next 48 hours we decided to take Seth back to clinic on Wednesday.  We'll have to see how things go today.

Tuesday, April 4, 2017

9 Months and Week 7

Today Seth will start his 7th week of treatment.  This will be a little different than weeks past.  Steve sent me this picture earlier today and thankfully Seth looks like he's feeling a little better than he did yesterday.


Today Seth also turned 9 months old.  I left Steve with the belly stickers and he did better than I thought   😁




We're missing Seth and Steve at home but hopefully he will be able to come home later this week.  We'll have to see how everything pans out.

Monday, April 3, 2017

Ommaya and G Tube

This morning we headed into Children's early to have Seth's ommaya reservoir placed which we have been waiting so long for. 
 
While we were on our way in Sadie was at the dentist and for the first time she sat all by herself in the chair and had her teeth cleaned!  She still tried to get extra toys for the treasure chest but I'm so happy she sat by herself.  Gramma may be on dentist duty from now on.
 
 
 
Fortunately we were able to coordinate the ommaya with general surgery and have his G tube placed under the same sedation.  It's nice when things work out like that.  He was taken back about 10:30 for his scheduled 11 am surgery.

Dr. Goumnerova went first placing the ommaya in his head.  We talked with her before surgery and went over the procedure which we had heard of and talked through before but she also mentioned that she was going to try to build up the area around where the stint is placed to try to reduce the possibility of the fluid collection that seems to come and go as Seth continues with his treatment.  Unfortunately, she was not able to do this.  She explained that a baby's skull is so thin it could be cut with just a pair of scissors and there wasn't enough to work with to build it up.  The stint may reduce the flow of fluid but we'll have to keep an eye on it.  I asked if this is something that will clear on its own as he grows and his skulls grows.  She said that is the hope but nothing is guaranteed.  When he is older we can explore other options and possible repairs if the fluid collection continues.  We will not be able to use the reservoir for his chemo this week but hopefully next week it will be ready for use after having some time to heal.
 
The G tube was then placed by general surgery.  We met with the surgeon beforehand and walked through the procedure.  He had another surgery right after so we wouldn't see him again today but they would check in on Seth when he's on the floor tomorrow during rounds. 
 
We finally got called back to see Seth around 2pm.  He was extremely cranky.  The bandage on his head is the same as the craniotomy but much smaller.  I'm anxious to see how noticeable it is once healed and the bandage comes off.  We're thinking since we're used to seeing him with the fluid collection it may look a little like that.  Even though we were looking forward to the G tube so he could have his face and arms back it wasn't easy seeing another "accessory" on my little guys torso.  I'm sure after a while it will become second nature like the central line.  After a few doses of morphine, some valium and some awesome nurses who bounced, rocked, and pushed him around the PACU in his stroller he seemed to calm down.  The nurses were also nice enough to let us go get some lunch/dinner since Seth's room wasn't going to be ready for hours on his regular floor.
 
After eating we headed to the car to get the bags and rock n play to go to the room with Seth.  We were able to get upstairs a little earlier than expected but just before being wheeled up Seth finally got to have something to eat.  Neurosurgery gave the green light right around 6:30pm.  That is one thing we weren't aware of.  Seth had to wait an additional 6 hours after surgery before he could eat anything.  When we arrived to 9NW our new home away from home all the nurses were excited to see Seth.  He was still pretty cranky so we did a lot of laps around the floor.  We even ventured over to 9 East which gave us a bigger loop to travel.  It was opening day at Fenway so I was waiting for traffic to die down before heading home.  Just as we were about to give Seth more to eat since we started him with just 3 ounces and he was doing well he got sick and lost what looked liked everything he had taken.  So he will be on a slow continuous feed through his G tube overnight and work his way up to bigger boluses like he was having previously and hopefully get back to eating by mouth again.
 
Before heading home I had to grab a few pictures of the little man because he is such a trooper and how can I resist taking pictures when he's so adorable?
 
 

Thursday, March 30, 2017

Weekend Home

Seth came home on Wednesday.  We were really happy to have him home although he was very cranky and really just wanted to be held mostly while standing which meant a back breaking weekend for both Steve and I.

Enjoying some jumping



Sadie had a her dress fitting for Uncle Jason's wedding which required bribery with a donut in order for her to take the dress off!  She also wanted to take Seth's high chair for a while and play.
 


Breakfast with the little lady after she had her best dance class yet.  And she tried bacon and liked it!!


Playing in the ball pit which has had the longest life of any ball pit of it's kind known to man.

Sunday we went to the mall early to see the caring Easter Bunny with the kids.  Sadie hesitantly gave him high fives and hugs this year but still didn't want to sit with him alone or Seth so a family picture it was.  As you can see Seth wasn't a big fan of him as well.




After pictures we did some coloring, said hello to some puppies, and then the little man decided to pull out his feeding tube!!  Fortunately, when we got home Seth took a bottle.  Since we were going back in Monday morning for the ommaya and G tube placement we were comfortable foregoing a few of his meds that taste awful and he won't take by mouth.  It's always such a relief when the tube is out and it was obvious Seth felt the same way because he was a little less cranky and we were able to put him down and play a little bit more.
 
Sunday night Steve and I got out for the night with Jenn and Bob to a comedy show in Boston thanks to my parents for watching the kids.  It was nice to get out for a little bit and laugh a lot even though the seats were VERY TIGHT quarters!  Thanks for a fun night!