Set Backs

If there is a setback that could be encountered through this process we are absolutely hitting all of them!!! 

 

Seth has been in the hospital all week getting prepared to start treatment Friday.  Monday morning we arrived for his hearing test and to have his new central line placed.  His hearing came back as normal for his age the line placement went well.  He now has a double lumen and we made sure to ask the surgeon if it drew well.   

Waiting to go back for his hearing test and new central line.

After getting settled in his room.

 

Tuesday was a low key day with no tests scheduled however he did get his flu shot.  Steve and Seth got a visit from a high school friend whose son also had ATRT and has been through the protocol.  It’s nice to have a friendly resource that has been through this before and can probably relate to our feelings and questions the most.  Auntie Jenn also came to the rescue today delivering Seth’s beloved swing to help with sleeping at night. J  Wednesday he had another GFR test to make sure the medicine will flow correctly.  Steve mentioned to the doctors Seth had a cough, as a result they ordered a flu swab which would come back in 24 hours.   This also meant he was on precautions where all hospital staff has to gown and mask up to come in and see him.  

 

Dr. Wright came by this morning to check in on Seth and have me sign consents for today’s procedures.  She also mentioned she had been keeping an eye on the fluid collection from the craniotomy.  She said it may be related to the surgery, it may be related to his high white blood cell counts, and Dr. Goumnerova may need to repair that next week when she returns.  I asked if the reservoir could be placed at the same time and they would push for that but it would be up to the surgeon.  Today he had the CSF flow study to make sure the chemotherapy done through a lumbar puncture and later the head reservoir will flow correctly.  Unfortunately, anesthesia was running behind which meant Seth had to go longer without food.  He was less than happy about that but we did our best playing with toys and distracting him.  Dr. Wright walked us down to nuclear medicine once we got the call they were ready for us in an effort to speed things along.  He did great during anesthesia and they got the lumbar puncture right away and everything went smoothly.  He did not however like having his images done afterwards.  I can’t really blame him because he was wrapped up like a burrito, put into a machine where his head was held still and it was less than an inch away from his face.  You certainly couldn’t have paid me to get in there!!!  This was done three times today and we’ll have one final set of images done tomorrow. 

Hanging out waiting for the CSF flow study.

 

Late today the flu swab came back and we learned that Seth has RSV and will NOT be able to start chemotherapy tomorrow as planned.  While we understand Seth’s safety during all of this is the number one priority it doesn’t come without a lot of disappointment and frustration.  It has been almost two months since we got the devastating news Seth may have ATRT and we are anxious to get him started on the path to healing.  The plan for now is to get Seth healthy and then start treatment hopefully sometime next week.  Until then we’ll have a few days at home before coming back to clinic to see if Seth is well enough to start treatment.

Fevers

Seth has been having fevers since his craniotomy.  Sunday night after being discharged and home for a day Seth had a fever greater than 100.4 so Steve took him into Children’s  to get a dose of 24 hour antibiotics to fight against an infection as well as blood cultures to test for infection. 

On Tuesday we headed into the Jimmy Clinic for an appointment to go over the treatment plan.  Seth had a fever again and luckily could get this round of antibiotics and cultures done while we were at the clinic.  Steve stayed with Seth while I met with Dr. Eng and Dr. Wright to go over the remainder of the side effects for the proposed treatment which includes 10 different drugs, it’s quite the cocktail!  Many of the side effects are well known with any chemotherapy such as hair loss, nausea, vomiting, low counts, fatigue but some of the others I wasn’t really prepared for was the likelihood he would have some sort of hearing loss and the possibility of infertility – this being one I never thought I would be thinking about as it relates to my 6 month old son.  The doctors explained the first 6 weeks of treatment are extremely intense especially the 1^st and 4^th week.  As a result Seth will be an inpatient for at least that amount of time once treatment starts.

Wednesday Seth’s temperature started to climb in the afternoon and he ended up back in the ER for another round of antibiotics and cultures.  So far all of the cultures have come back negative for infection.

Before we can start treatment we need to have Seth fever free for 48 hours so we can get a working line, have an audiology test, ECHO, and CSF test.  We are hoping that the rickham reservoir can be placed during the sedation for the new line placement to limit the amount of times he has to be put under. 

Today Seth had his central line removed.  We’re hoping this will put a stop to the fevers he has been experiencing.   Right now he has a full schedule next week to get the procedures/tests done before treatment can start.  We’re hopeful everything will be completed soon so we can begin chemotherapy.  Of course we don’t want Seth to have to go through any of this but we’re anxious to have it all start so that we can get Seth well.

ATRT

Today I arrived at the hospital around 11:30 and when I got to Seth’s room Dr. Goumnerova, Dr. Wright, and Chris were there talking with Steve.  They informed us that the pathology came back late last night and confirmed the diagnosis was ATRT which they had suspected when we met 6 weeks ago.  It seems like we have been waiting forever for this diagnosis so while it’s a relief to finally know what we are facing it opens up a whole new set of emotions/feelings for what is to come.  Dr. Goumnerova told us they had gotten 80-90% of the large tumor and she was very pleased with how the craniotomy/resection had gone.  Seth will need a port (reservoir) placed in his head to help treat the spinal fluid in coordination with the chemotherapy he will receive through his central line.  Treatment may start as early as next week.  We still need to have a meeting to go over the treatment plan which will give complete details of what to expect but from what we heard today and in talking to everyone at the Clinic previously the treatment for ATRT is very intense.  The first few weeks are especially often hard and then tapers throughout the remaining treatment which we can expect to be at least year for the course of treatment he will undergo. 

Before Seth can begin treatment we need to figure out why his central line isn’t drawing and also try to figure out why he’s having so many fevers throughout the day.  As of tonight the fevers have been down since the afternoon so fingers crossed that continues.  Many people have been in on the discussion of the central line including neurosurgery, oncology, general surgery, and infectious disease and it is sounding like the central line will be removed and replaced.  We are hoping this can be done at the same time the reservoir is placed in his head to limit the amount of times he will have to be put under anesthesia.  For now we can expect to be in the hospital until we have the central line fixed. 

Seth is doing well and is much more himself as the days go on.  He isn’t as interested in his bottles but he truly enjoys his oatmeal, fruits and veggies until the last drop.  We hope that his appetite continues once treatment begins.  For now we’ll be hanging out at Children’s until everything gets all sorted out.

Tumor Resection

This morning we left the house bright and early (4:45am) to get to Children’s for our 6am check in time for Seth’s craniotomy.  We headed up to the third floor and waited to be called back to pre-op. 

Waiting to be called back.

We were called back and started getting Seth prepped for surgery.  He was undressed, weighed and his vitals were taken before we got him settled into his johnnie.  We waited quite a while for any of teams to come back and say hello.  We were scheduled for 7:30 surgery and didn’t see anyone until after 7.  Initially Seth was scheduled for surgery in a room including an MRI machine which requires extra equipment and more precautionary measures so he was switched to a regular operating room which pushed his start time back quite a bit.  Anesthesia and Dr. Goumnerova came back to see us and explained their parts in the procedures.  We signed the consent forms and once the room was ready Seth went back with the anesthesia team. 

Walking with Dada before surgery.

The surgery was scheduled for 4-5 hours so we grabbed our parent badges and some breakfast to bring back up to the waiting room with us.  At about 11:45 the liaison nurse came out to tell us they were finishing up and Dr. Goumnerova should be out shortly to talk to us.

Dr. Goumnerova brought us into the consult room and explained that the surgery went well and Seth did great.  He was not awake yet but they didn’t run into any problems and they could see the tumor right when they opened things up.  She took out the largest tumor located in the right ventricular system.  Steve asked if they got the entire tumor and she explained she took what she could see of the tumor without digging around in other areas of the brain and believed she had gotten most if not all of the that tumor.  She also let us know they did a “frozen” analysis of the tumor and it did come back as malignant, she even looked at the sample herself.   Even though we knew this was the case from the meeting with her last week it was still hard to hear and hit me hard.  She went on to tell us the tumor still didn’t present like the malignant tumors she has seen and for lack of a better description it was watery rather than a solid mass.  She explained that by removing this tumor they had cleared the way for spinal fluid flow so that was no longer a concern.  Seth did receive a blood transfusion because his red blood cell count was a little low and she clarified it was not because he had lost a lot of blood during surgery.  We knew that was a possibility since they had told us this beforehand.  Steve asked if it was worrisome that the tumors had grown in less than a months time and she reassured us that these types of tumors will grow without treatment and the amount of growth seen was not unexpected or alarming given the time between scans.  She said Seth would be moved directly to the ICU for recovery so if we wanted to grab some lunch and then head up there it should be a good amount of time to get him settled.

We got some soup and sat in the family center for a while before heading up to the ICU about 1:30.  He still hadn’t arrived so we waited in the waiting room until they called us back.  While the bandage on his head is larger he seemed to be much less irritated than he was after the biopsy previously done.  He was uncomfortable but we got him situated in a chair with me and he calmed down for a few hours.  While I was holding him he seemed to be getting very warm and red.  I wasn’t sure if it was because he had tons of blankets all around or he was running a fever.  But we had the nurse check him and he was running a fever.  He was given Tylenol and he finally got to have something to eat which he clearly wanted after taking a full 6oz.  We got him back up into his crib where he settled back down and took a little nap. 

 

He didn’t sleep much Monday, just little amounts of time here and there.  Steve and I went down to grab dinner after Seth had another bottled and seemed to be sleeping peacefully.  We got back upstairs right around 7pm so I waited for the evening nurse to come in and introduce herself before heading home so I could spend some time with Sadie in the morning.

January 10, 2017

Tuesday morning I got to spend some time with Sadie and take her to play group before heading back into the hospital.  She definitely knows something is going on and is much more aware of when Steve and I or even Seth say we are leaving.  She always wants to come too but overall she is doing well through the whole process.  I checked in with Steve earlier in the morning and he mentioned Dr. Goumnerova said Seth looked great and like nothing had happened to him and he may even be able to go home later that day.  Steve said my wife won’t go for that!  I mean he did just have what I consider major surgery let’s not rush home this time!!  Before I got back to the hospital they had come to do an X-ray of Seth’s central line to see if it was placed correctly.  This confirmed it was actually in the correct spot which was good news but still left the mystery of why it wouldn’t draw.  They mentioned they may do a TPA to try and clear the line (aka draino for central lines).  I headed back into Children’s around 1 and was proud of myself for getting in by myself, I’m not one for driving in the city … ever!!  Seth was still in the ICU and he looked red and swollen to me and just uncomfortable.  He was still running a little bit of a fever but we were giving him Tylenol every 4 hours to try and get it to come down.  We got moved to a regular room shortly after I arrived.  We’ve been on the 9^th floor for our last few stays but this time we were put in a single room which was so nice.  We had lots of room to walk around with Seth, both holding him, or in the carriage, and we didn’t have to worry about disturbing a roommate or vice versa.  I was planning to stay over so Steve left to beat rush hour traffic and spend some time with Sadie.  Seth and I played and rocked and even had a visit from Auntie Jenn.  His temperature was still up so I was diligent on making sure he was getting the Tylenol every 4 hours and that his temperature was being checked regularly.  He still hadn’t slept much since Monday so we had some cuddling time where he slept, and we did some back and forth in the carriage where he fell asleep for a few hours, and then another session of me in the crib with him until he fell asleep.  All things considered he did very well overnight especially with still not feeling himself and being very hot with the fever. 

January 11, 2017

Wednesday morning Seth woke up about 4:30 and was already looking much more like his smiley self.  The last few days we had to really work to get a smile out of him but today he’s finally flirting with the nurses a little more.

Looking happier this morning.

  He had managed to once again pull his central line dressing up so we had an early morning dressing change.  Neurosurgery came in for rounds about 7 and said he looked good and he needed an MRI today.  I asked if this was a sedated MRI or a fast one like he had last time.  They said sedated … ugh.  I had just fed him and he only took 1.5 oz.  Had I known I would have held off on it!!  At any rate he was NPO until further notice.  Later Chris from neurosurgery came in and apologized for the miscommunication and he was going to try to get the MRI set up for later today and also a blood draw because they wanted to check things out because he was running a fever.  He said we would not be going home today which I was totally fine with because I didn’t want to go home with Seth still having a fever.  Later that morning Dr. Goumnerova came to see us and said he looks great.  I asked about the fever and she said she wasn’t as concerned about it because it was common with surgeries occurring in the ventricular system.  She seemed a little annoyed that the MRI didn’t happen yesterday.  I asked if there were any results back yet of course knowing there weren’t but I had to try anyway J.  She Okayed the TPA for his central line so we could see if that would clear it up.  Seth and I went for a walk down to the cafeteria to get some breakfast and try to distract him from the fact he hadn’t eaten yet. 

Breakfast with Mama

For all these times he’s been made to fast he’s done amazingly well!  We returned to our room and did a few laps around the floor until he fell asleep in the carriage.  We went back to the room so we could rest quietly.  When he woke up the nurse came in to administer the TPA which had to rest in the line for a few hours before they could try to draw from it.  He woke up about 11:30 and the nurse said she would get everything ready to try the line again.  This worked out perfectly because they had mentioned they were doing chair massages today and if I would like one. When I returned the nurse and clinical assistant were working on drawing from the line.  It was still drawing very slowly.  She did get what she needed but said she would ask about having a line study done because it’s not fair to him to have what is supposed to make having blood draws done easier and he has to do basically baby yoga during it to get anything out.  Seth took another short nap and the nurse came in to give him IV fluids since he hasn’t been able to eat since early this morning.  Shortly afterwards the CA came to take Seth down to MRI.  I hung back to catch up on some work since Steve had gotten here while Seth was napping.  Chris from neurosurgery came in to confirm again that we were not going home today and he had sent in the orders for the line study.  He’s not sure if it would happen today but at least with this he wouldn’t have to fast.  He assured me that fixing the line would not require surgery and would be much less invasive.  Seth returned from his MRI and did great.  He was babbling when he came back and the nurse mentioned he was scheduled for the line study at 8am tomorrow morning.  Hopefully we can have a good nights rest and get to go home tomorrow after 24 hours of no fever.

Thank you!

We want to say thank you so much to everyone who has reached out with cards, phone calls, text messages, well wishes, food drop offs, help with the kids and just providing normalcy in our lives.  We truly appreciate it.

Many people have asked how they can help and where donations can be made. A bank account has been set up at TD Bank for anyone who would like to make a monetary donation to the Seth Bottari Fund. After reaching out to much more tech savvy people than myself a PayPal account has also been set up.   You may deposit at any TD bank or you use this link to make a donation via PayPal by using the "send to family and friends" option:

https://www.paypal.me/SethBottariFund

Thank you so much again.  We are truly blessed to have such a great support system behind us.

Repeat MRI

Let’s start out with some good news … our little man is 6 months old today! J 

Late yesterday we got word that a repeat MRI would be needed to check for any changes in Seth’s tumors.  We arrived at Children’s about 6:45am and hung out in the lobby looking at the fish before heading up for our scheduled appointment.  We were called back shortly after checking in and once again the nurse assigned to us was getting lots of smiles and laughs out of Seth.  They started with his vitals and we changed him into a johnny and pants while the nurse prepared to do his blood work.  I left the room and when I returned the nurse and Steve said the line wouldn’t draw.  This is a real bummer because this is the second time we’ve tried to use it.  The first it was difficult and this time it didn’t work at all.  Blood draws are one of the main reasons for having a central line so I’m not sure what may be done about that going forward.  Anesthesia came in a little later and discussed the procedure and Seth was off to have his scan.  We went downstairs for a quick bite to eat and shortly after we returned upstairs they brought us back to see Seth.  They explained that they had put in another iv while he was asleep and got what they needed for the blood work.  He was a little groggy and cranky but after his bottle he was much better.  We got him dressed and were off to wait for our appointment with the surgeon.

After his MRI

 

Around 11am we arrived at the surgeon’s office to discuss next week’s craniotomy.  She began by saying they were all really disappointed that the first biopsy didn’t provide any tissue for diagnosis and explained sometimes brain tumors have a thin layer of “normal” brain tissue around them and it appears that is what they got in the sample.  As a result they believe the craniotomy is the best way to go so we can get a diagnosis.   She assured us that there would absolutely be a diagnosis after this procedure because a larger piece of tissue will be taken.  She explained she had reviewed the MRI scans from earlier this morning and the tumors are grown “noticeably” and there is a third tumor in his eye.  This tumor was in the initial scan but so small they hadn’t seen it originally.  Her plan is to remove the largest tumor completely if it is safe to do so.  She will assess that on Monday once she begins the procedure.  We had really been holding out hope that these tumors may be benign but she confirmed today after seeing the growth and now the tumor in the eye that they are in fact cancerous.   We went on to discuss the procedure itself, the recovery, and what to expect afterwards.  We also asked if it would take another 10 days to get results this time and she said we hope not.  Everyone is aware that we need a diagnosis as soon as possible so we can get Seth into a treatment plan.  The delay before was due to the unfortunate timing of the holiday season and a skeleton staff for pathology. 

It appears Seth is giving all the doctors (both her and our oncology team at the Jimmy Clinic) a run for their money because what they are seeing isn’t necessarily consistent with the ATRT they initially suspected, but it’s also not consistent with any other tumor habits they can pinpoint.  Which means we really have no idea what to expect and that makes the results of the pathology that much more important. While we are nervous to get the pathology results because then this nightmare will really start to come to life it will be the start of getting Seth well.

Seth will have his pre-op appointment tomorrow and we are scheduled for surgery Monday morning.