Extended Stay

Thursday Seth was scheduled to have his intrathecal chemotherapy.  He is so far behind on these we have been anxious to get this started using the ommaya reservoir that was placed.  Earlier in the week there had been talk of still going to the operating room and being sedated due to the fluid collection making it a little hard to see where to actually place the needle.  On Wednesday the fluid collection seemed to disappear. and I was elated thinking we could push forward using the ommaya and get it done today and maybe get out a day early!!  I asked Dr. Chi if we would be able to use the ommaya and she said they would have to asses but we were still holding onto the OR slot on Thursday.  Dr. Wright Seth's main oncologist came to see us on Wednesday because she would be performing the procedure.  She was surprised to see how much the collection had gone done and was hopeful she could do it without sedation.  Luckily, Thursday came, the collection was still down and Dr. Wright was successful using the ommaya!  Thank goodness because we would have hated to put him through an unnecessary surgery.

 

 

 

Seth was discharged on Thursday and we headed home about 2pm.  We luckily didn't hit any traffic and he slept the whole way home.  When we got home I noticed his onesie was all wet near his G tube site.  They had been pretty generous with the bacitracin application so I thought maybe it just leaked out so I changed him and within 10 minutes his shirt was soaked again.  We called and spoke to the nurse practitioner of our usual floor at the hospital and she said to try and get the visiting nurse to come take a look otherwise he would have to go to the emergency room.  Unfortunately, the visiting nurse couldn't make a visit that day so we headed back to the ER at Children's after being home for roughly two hours.  Seth's magnesium levels have been low or borderline so we wanted to make sure he was getting all his meds as well as nutrition.  The whole reason we opted to go for the G tube was because it was supposed to be easier!!

 

The ER doctors tried to send us home and to follow up with the GI clinic the next day but we were rather insistent that we wanted Seth to stay because we weren't comfortable with him coming home because we didn't know if he was getting his meds and nutrition if it was leaking.  Seth was admitted to 9N later that evening to be observed overnight.  Come to find out the balloon that holds the G tube in didn't have enough water in it after being check by the GI team on Friday.  We did check it at home and it had enough so we're not sure what happened or why they didn't check that in the ER. 

 

 

Seth was kept another night for more observation and to ensure it wasn't leaking any longer.  He was schedule to be discharged on Saturday.

 

Saturday morning Steve called and told me Dr. Chi said we have two options: we could go home and come to clinic on Monday hoping the insurance company would approve his admission the same day otherwise we would have to wait until possibly Wednesday or we could stay in the hospital for the weekend and begin his treatment Monday as planned as long as his platelets came up to 100.  They were 89 on Friday so we were all fairly confident they would be at 100 for his Monday labs.  Due to all the delays we've already had with Seth's treatment we decided to stay through the weekend so he could start week 10 of his chemotherapy regime on Monday after having his scheduled kidney test.  It boggles my mind that the insurance company would deny an admission when they know his course of treatment and needing approval for every admission when they know it's coming. 

 

Dr. Chi said that if we stayed we could have a day pass and Seth could get out of the hospital for some of the day.  I headed into the hospital Saturday night to relieve Steve who had stayed since Thursday and we planned for a fun family day Sunday.

 

Sunday was a low key day at the hospital.  We were just waiting until Monday to get things started.  Dr. Chi came to see us and told us to enjoy some time out of the hospital.  Steve and Sadie picked us up around 10:15 and we headed to the aquarium (the hospital was nice enough to get us passes).  Unfortunately, Sadie wasn't too interested in the aquarium and it was super packed so we decided to head outside and over to Faneuil Hall since it was a beautiful day.  Great decision!! They had a street performer named Pogo Fred which we all enjoyed, grabbed some lunch to eat outside, rode the carousel a few times and ended with some ice cream.  Couldn't have asked for a better day other than having to return to the hospital.

 

On the ride back over Seth was getting upset and you could hear Sadie in the backseat saying "It's ok Seth we'll be back at the hospital soon."  Melts my heart and breaks it at the same time.  Back up in Seth's room we enjoyed decorating a cookie and cupcake, chocolate milk, many walks around the floor, and even got some new red sox hats from child life.  Steve and Sadie headed home around 6pm and Seth and I settled in for the night.

 

 

 

Monday morning I was anxious to hear what his platelets were.  I saw the nurse around 6am and asked.  She said everything looked great and his platelets were 70.  My heart sank ... and I said what? they need to be 100 in order to start chemo today?!?!  I pretty much knew at that point we were headed home.  She paged the doctor and we would hear later.  We headed downstairs to get some breakfast and to nuclear medicine to start his kidney test.  I didn't want any delays since I had a gut feeling we were going home.  About 9:30 the doctors rounded and just as I suspected we would be going home.  The plan was to be discharged later today once his kidney test was done and VNA would check his labs on Sunday to see if we were ready to start next Monday.  While we are disappointed for yet another set back we will take advantage of this week home together as a family.

 

 

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.

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.

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!

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.

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.