Our Smiley Seth

Our Smiley Seth

Sunday, June 18, 2017

Blood and Bowel Infection

Sunday morning we were looking forward to celebrating Father's Day.  Steve had planned to meet his family with Sadie for breakfast to celebrate and later in the day we had plans to head to my parents for lobster, steamers, and grill food. 
Saturday night Seth was up for a few hours and was difficult to get settled.  After giving him Tylenol and not settling we gave him some pain medicine.  He seemed to settle down for a little while but in the morning he was still more irritable than usual. 
I headed downstairs with the kids so Steve could maybe sleep in a little bit.  Sadie was anxious for Dada to come down and give him his gift so unfortunately he didn't get to sleep in too long.  She was so excited to give him his gifts and was more than happy to take pictures of the one of a kind items.


Around 8am Seth was still pretty uncomfortable but then started shivering and sounded like he was breathing really fast while I was holding him.  I called Steve downstairs and he put a call into the Jimmy Clinic and soon after he was headed into Children's with Seth.
Seth's had a fever of 39.5 which is one of the highest he's ever had and his heart rate was extremely fast, in the 200's.  His blood work came back and everything was still looking good so we needed to wait for the blood cultures to come back.  He was sent for and x-ray of his belly due to the bloody stool and it showed air in his intestines.  They explained to Steve that he had a bowel infection and would have nothing via his stomach or G tube until the infection cleared.  He was put on 3 antibiotics as a result. 

Sadie and I headed to my mom's and I would go to the hospital later because Seth was still very upset and hard to settle.
I got in around 6pm and shortly afterwards the resident came to visit and give us some information on what the plan was.  Not too much longer she came back and told us Seth's cultures had come back positive for bacteria.  This is the first time we've ever had this happen with all the cultures he's had drawn.  They weren't sure what the bacteria was yet and wouldn't know for a few days but hopefully the antibiotics he was on would start fighting the infection.  Once they knew for sure what it was they could change the treatment if necessary.
It wasn't the Father's Day we had planned for but we made the best of the night by playing Heads Up and getting out of the hospital for some dessert. 
Seth was still pretty upset when we got back and wouldn't let Steve sit with him while he was sleeping but would with me.  I decided to stay because I wanted to hear what our normal team had to say about his condition and the treatment plan.  He spiked a fever again around 11pm with the shivering and fast breathing again.  So scary to see him like that and not being able to do anything for him.
Monday morning Seth was still really upset.  Kate came to check on him early and we talked about how the morphine he was receiving wasn't lasting the whole 2 hours.  He was very puffy from all the fluids he's receiving and just uncomfortable.  She would put the orders in for a PCA so he could receive the morphine continuously and avoid a lapse in coverage. 
Dr. Chi rounded later with the team and told us the infection in Seth's line was an M negative rod infection.  They would take cultures daily to watch the infection and hope it responds to the antibiotics.  It is a possibility that it could not, which would mean his line would have to be removed, he would have to be free of infection, and not neutropenic (which is most likely coming as his counts drop) before he could receive a new one.  This would involved everything being done through peripheral IV'.  The thought of that for him with everything else he's already having to go through is awful.  We are crossing our fingers, toes and everything else that isn't the case so he doesn't have to go through 2 additional surgeries.  He will begin nutrition through his IV called TPN later in the day. 
Seth went for another x-ray of his belly because of his visible discomfort and later in the day the PCA for morphine was set up and then increased because he was still visibly upset.
The general surgery team came to see Seth and explained that the damage to his bowel was rather severe.  This type of infection in a child of Seth's age is uncommon but because of everything else he's going through he is more susceptible to infection.  He will definitely have nothing through his stomach or G tube for at least 7 days but could be upwards of 14 to give his gut a rest.  They will be watching him closely to see how things are progressing.
Now it's a waiting game.  Hoping this infection clears with the antibiotics and Seth starts to feel better because he is so uncomfortable. 

Monday, June 12, 2017

Week 16

Monday morning we headed into the Jimmy Clinic to start Seth's next round of chemo.  This round is typically done as outpatient with patients going in and out each day for treatment but after talking with Seth's doctors we decided it would be easier on us and Seth to have it as inpatient.  Seth had his blood work done and everything was looking great to get started. 

He received all of his chemotherapy in the clinic while we waited for his room at Children's to be ready.  He received Vincristine - 5 mins, Cyclophosphamide - 1 hr, and a new drug he's never had before Actinomycin - push. 
We had originally thought this round was going to be 3 days but after talking with Dr. Wright found out it was actually 5. 
We had talked with Seth's nutritionist during his last admission about switching him to the next stage formula to help him gain weight before the stem cell transplant.  We started it on Tuesday and he was tolerating it well.
There was a lot of down time during this admission but it was much better than driving in and out each day and Seth could play and walk the floor and talk to all his ladies (the nurses) regularly.  He did pretty well during this admission and only had one really bad night of sleep.
Sadie was lucky enough to have another trip to Gramma's beach house during this admission and they had great weather.
Due to the change of plans from 3 to 5 days we had to do a switch on Wednesday so I could take Sadie to her dance recital rehearsal.  It's always nice to enjoy these "normal" activities with Sadie.  She did great at rehearsal and we're looking forward to Saturday.
Wednesday afternoon someone from food services came up to invite us to parent's night out.  Given Steve was coming in and I was heading home I signed us up to enjoy some time together before heading home.  I was a little weary of the menu being it listed things like oysters, striped bass, and cantaloupe bisque on the menu but we are both so happy we went.  It was a nice break from the monotony of being in the room or walking the floor and the food was amazing!!

They had bumped Seth's chemotherapy earlier on Thursday so Friday we could get discharged at a reasonable hour.  We've been meaning to have Sadie tested for some time and have a follow up with the genetics team and we managed to schedule her for Friday as well.  We headed in early Friday morning and sailed right in ... no traffic!!  I'm not complaining but very odd!  Since we got their so early we went over to visit with Seth and Dada before heading to the clinic.  Steve had mentioned Seth had blood in his stool this morning and they had taken it for testing.  They thought it may be an intolerance to the new formula and it should work it's way out.  It unfortunately happened again later in the day so it was decided we would switch back to his previous formula.
Sadie and I headed over to the clinic and she loved playing in the play room and with the musical instruments and she did amazing for the blood work!!!  She didn't even flinch and took it like a champ.  While I sat there asking her to examine a curtain that was hanging for a distraction.  Afterwards she got to have a prize out of the prize box and stickers.  She was thrilled!! 

We headed back to Seth's room and rode the tricycle around the floor while the discharge paperwork was being prepared.
For now we will watch Seth's diapers for blood and if it doesn't clear up by Sunday we should call and get checked out.  Seth was also scheduled to be back for a well visit on Monday with the GI team for his G tube.  This had been postponed a few times already. 
We were thinking his next big admission would be for the stem cell transplant but due to the good response he's had and the tumor shrinking we will continue on with chemotherapy and hope that we can get to a point where there is no sign of disease before going through with the stem cell transplant.  That round is scheduled for July 10th.
We're looking forward to some time at home and enjoying Sadie's recital and Father's day together.


Friday, June 2, 2017

Week 14 & 15

Seth wasn't scheduled to go into clinic during weeks 14 & 15 except for when he spiked a fever.  We had a good amount of time at home as a family which we always enjoy.

On Friday when leaving for work I just had a feeling it was going to be the day.  Sure enough Steve called saying he had spiked and we had to head into the clinic and would be admitted from there.  I left work, picked up the boys and we were on our way.  The clinic nurse was actually waiting for us.  We headed right back to an infusion room where vitals, labs, and cultures were taken as well as starting up antibiotics and fluids.  They tried to give Tylenol as well to help lower his fever but he unfortunately got sick immediately after and lost it all.  They checked his temp a little later and luckily it was down so he didn't need Tylenol again to make up for the lost dose. 
The 9th floor was aware we were on our way so things were already in place for admission.  About 2pm we headed over to Children's to get settled in our room. 
Friday was National Donut Day! The floor had plain donuts with lots of icing, sprinkles, and candy for decorating, donut shoppe hats, pinwheels and balloons.  Whenever they have fun things on the floor they always send us home with some for Sadie and she really enjoyed it. 

Friday and Saturday Seth had fevers off and on and his counts were low.  Sunday he started to look and feel better so Sadie and I went in for a visit. 
After all we can't miss the monthly photo shoot.  Seth doesn't love these photo shoots especially when not feeling 100% but he was a good sport.  How is he already 11 months old!?!?!?

Steve, Sadie, and my mother in law headed out for some fresh air, lunch and time out of the hospital which meant I got to snuggle with the little guy.
After lunch we all headed down to the playroom to get out of his room and have some fun. before Sadie and I left.

Seth was scheduled to have an MRI on the 14th but because he was inpatient they were trying to bump it up.  Scheduling was a little up in the air but he was finally scheduled for 2pm on Tuesday.  I wanted to be there with Steve for the MRI and results.  We hadn't had an MRI since March so we were anxious to see how or if things were progressing with his treatment.  Much to my surprise Steve texted me before I was even leaving for work saying a case didn't show up and Seth was being taken down first thing.  Total change in plans for the day!  I worked from home for a few hours and headed in soon after.  He was out well before I even got into the hospital but the doctors hadn't come around to discuss the results yet.  More snuggling with my little man while we waited :).
Dr. Wright came to the room in the early afternoon and said things looked awesome.  What a relief!  I really had a knot in my stomach the past few days leading up to getting these results just not knowing what the outcome would be.  We are so relieved to hear that the tumor in his eye is considered to be fully cleared, the one in the back of his head has also decreased significantly and possibly even completely and the large tumor in the right ventricular system had an AMAZING response so far.  Pictures are worth a thousand words and this one right here is worth so much more:
You can see his scan on the left from March and the one from today on the right.  Amazing!!! We are so happy with the results and that these tumors are responding well.  Dr. Wright was even surprised with how much progress was made. 
He still has one round of chemotherapy coming up before he completes the first 18 weeks of the induction period in his treatment plan.  After that the plan is stem cell transplant which will be very difficult and require an extended hospital stay. 
For now we are celebrating some good news and enjoying time at home until his labs show he is ready for his next round. 
Sadie was so excited to have Seth back home and kept saying "I missed him" while giving him hugs and kisses.


Thursday, June 1, 2017

Golf Anyone?

Our friend Eric told Steve soon after hearing the news of Seth’s diagnosis that he had to do something and would we mind if he set up a golf tournament in Seth’s honor.   It’s amazing to see how thoughtful and generous people have been towards our family and Seth.  A golf tournament is no small feat to take on but he has done a wonderful job.

Friday, June 30th
Merrimack Golf Course
210 Howe St
Methuen, MA 01844
7am check in
8am shot gun start
Luncheon to start promptly after golf. (approx. 2PM)
Price per golfer is $150. (Includes luncheon after)
Price per person for just luncheon $50.
If you or anyone you know loves golf, raffles, lunch or loves to volunteer please pass the information along.  And if anyone has a company, department, family, team, anything really that would like to sponsor a portion of the event that information is below.
Please contact - sbinvitational@gmail.com or Eric at 781-706-2894 directly for any questions or additional information.
We hope to see some of you there for a fun filled day.
We can’t say thank you enough to Eric who took this on when things in his life were getting a little more hectic.  He and his wife Shannon recently welcomed their second child just a few weeks ago.  Thank you Eric and Shannon for supporting our family.  We love you guys.

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.

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 …