Week 11

We headed into Boston around 10:30 Monday morning for Seth's weekly appointment and his Vincristine.  Vitals and labs were done quickly and a dressing change because it was starting to lift.  We met with the doctors and Seth's hemoglobin was 6.5 and platelets were 18 which meant he needed a transfusion of both in addition to his chemo.  Fortunately, this chemo only runs over 5 minutes however, the clinic technically closes at 6 and the blood transfusion should run over 3 hours and the platelets over 30 minutes so trying to get them all in was going to be tricky including time for the orders to be placed and fulfilled.  It still blows my mind that things like this can occur at a leading treatment facility at any rate the plan was to run the platelets, chemo and then the blood transfusion.  We could transfer to the emergency room if we wanted to complete everything but the doctors ensured us he should receive enough before closing time.  

 

We also discussed Seth's magnesium levels because we have been watching those closely as he needed IV mag in the past.  He was on the low side of the scale at 1.1 so we'll increase his dose and hope it doesn't cause too much more poop.  It's a balancing act because he needs the magnesium but it can cause diarrhea which includes the magnesium being released.  So we'll see how he does over the next few days with the increased dose.  The plan is to have VNA come Thursday to do a full lab workup and we'll see if he needs any further transfusions or IV magnesium as a result.  We won't be surprised if he needs either because the last round he got both.

 

We headed over to the infusion room to get things started.  Here is Seth keeping busy during his blood transfusion.

 

 

He was shut off about 6pm and we were headed home.  We'll see how he does over the week but we'll hope to be home until Monday when we go back for another round of Vincristine, intrathecal chemo, and a follow up with the GI team.

 

Week 10

After having a week home with Seth we headed back into the clinic Monday morning.  The last few nights home were really hard.  He was up multiple times during the night and we had a really hard time getting him to settle down.  We were kind of glad to be heading into clinic today to figure out if maybe he needed blood and that is why he was so fussy.  I never heard from clinic about what time our appointment was so we headed in around 8:30 and would just hang around if needed.  I called on the ride in and we were scheduled for a 10:15 arrival time so it's a good thing we were already on our way.

 

We checked in and Seth was taken back for vitals.  Eliza our usual nurse said she could probably take us early because she didn't have anyone before our scheduled time with her.  I asked if we would need to do blood again today since he just had it yesterday with the visiting nurse and it was faxed over.  She went looking for it and unfortunately it didn't have the extended testing for magnesium and phosphorus that we need so he had it done again along with his caps being changed. 

How we keep Seth occupied in the waiting room.

We then met with Dr. Eng and Dr. Chi and talked about how Seth was feeling and told them how he was really cranky and had a few really tough nights.  All of his numbers looked good and his platelets were 172 so we were able to start his week 10 course.  We headed back out to the waiting room because an infusion room wasn't ready for us yet.

 

 

 About 3pm we were brought back to a room where he was started on IV fluids.  Later he would start the Vincristine and then the Cisplatin was hung right before our nurse from 9NW came over to get us.  We got Steve and Seth settled into his room and hoped for a pretty low key admission.  This round of chemo is similar to week 7 and Seth handled it pretty well so we're hoping for the same.

 

 

 

Steve met Kate the NP on 9NW Tuesday and told her about how fussy Seth was.  We accidentally had left one of Seth's anti nausea meds out of the fridge and couldn't use it anymore.  We had switched him to another one to cover for it but unfortunately coming off the other one so quickly could have been what caused him to be so cranky the last few nights.  We won't make that mistake again and at least now we know there wasn't something else wrong.

 

Seth went in for intrathecal chemotherapy on Wednesday and did great despite being very delayed in the scheduling. 

 

 

 

Thursday Seth finished up his chemo in the wee hours of the morning and also got some IV magnesium to help get him through the weekend.  I headed in to pick them up around noon time.  Traffic was terrible but it made it a little easier for pick up since I could just get them at the door rather than paying for parking.  We were home for the weekend and will head back in on Monday for his short Vincristine treatment.

 

We enjoyed the weekend at home as a family.

 

Out for a walk with Sadie and her snuggie tail the night before the boys came home. 

 

Seth turned 10 months over the weekend 😁

 

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.