Our Smiley Seth

Our Smiley Seth

Wednesday, February 22, 2017

Appreciative


We can’t say thank you enough to everyone who has supported us whether it be through donations, gift cards, babysitting, meal deliveries, good conversation, thoughtful texts, etc.  It really helps to make what is a crazy time in our lives a little less stressful and we appreciate it more than you know.

That being said my cousin Jenn, who has done so much for us already, is donating ALL of her commissions from the current event she has running in her Thirty-One business to the Seth Bottari Fund.  I can’t say enough about the products.  They basically get us to and from the hospital and everywhere in between these days and there is something for everyone.  If you've been meaning to try them, need Easter Baskets, organization items, or just love their products like me please check out what they have to offer.  The possibilities are endless when it comes to their use.  I’ve included that link below:


Our other good friends Danielle and Brian Woznik have generously decided to donate a portion of their commissions for February and March sales of their Younique business to the Seth Bottari Fund as well.  I personally haven’t gotten to try these products but I know many friends and family swear by them and their infamous fiber lash mascara.  The link for their website is:


Through all of this we have learned that our friends and family are pretty amazing.  Thank you again and thank you to Jenn, Danielle, and Brian for thinking of us and sacrificing their income to support Seth.

Friday, February 10, 2017

Week Two


Seth started week 2 on Friday with Vincristine.  Luckily, this only runs over 5 minutes and will give Seth some time to deal with some of the side effects from the other chemotherapies he received last week.  He is still spiking fevers here and there and his appetite has been hit or miss.
 
I came back to the hospital Saturday to swap places with Steve.  We were looking forward to having a little family time all four of us but while Sadie was at swimming with Gramma and I was packing everything up to go Steve called and told me the doctors said it wasn’t a good idea to bring Sadie in.  I was devastated.  I had been telling her for a few days we were going to visit with brother and we had gone to the store on Friday together to pick out a few new toys for Seth, we had drawn him pictures and Valentine’s to decorate his room and stocked up on lots of baby food for his eating pleasure when his appetite comes back fully. 
 

The cold never stops Sadie from riding
the ponies outside Market Basket.

Playing in the snow before receiving
the disappointing news.
 
To say I was upset is an understatement.  We were all looking forward to some time together and it broke my heart that Sadie wouldn’t get to see Seth.  None the less I managed to pack up the car and be on the road before Sadie got home from swimming.  Steve and I had a quick hello and see you later in the hospital round about while I loaded up the wagon with our supplies. 
Saturday Seth and I cuddled for most of the day.  I missed my little guy and snuggling.  It was a pretty low key day where the only thing on the docket was his continued anti-nausea meds and GCFS recovery shot.  Dr. Kieran came in and we chatted for a while.  He brought up the idea of the NG feeding tube again and said that it may be soon because he hasn’t been eating much and when he did he was vomiting most of it up.  Surprisingly he ate well for me for the rest of the day but we sort of knew that was going to be part of the process it was just a matter of when.  I of course had forgotten my Tami Flu at home so Philip was kind enough to bring that in for me.  We had a good visit and he got some good smiles out of Seth 
 
 
 
Sunday was another low key day that consisted of just cuddling and trying to make him as comfortable as possible.  Dr. Kieran came in during rounds and said his counts were practically zero and he’s now officially neutropenic.   He said his blood counts were also getting low and he will most likely need a blood transfusion within the next few days.  Sunday was a rough night.  He couldn’t seem to get comfortable unless he was sleeping on my chest and the few times I managed to get him sleeping in the swing always happened to coincide with the necessary vital checks.
Feeling a little happier :)
Monday morning I was woken around 5 (after being up numerous times during the night with Seth – I would kill to sleep until 5!) with the news his blood counts were low and he would be getting a blood transfusion shortly.  Anyone who knows me well knows that I don’t do anything related to blood very well.  I have prepared most of the nurses along the way with the daily bloodwork about having to just sit on the couch until it is all done.  One time I did attempt to be brave and stay with him and ended up laying on the couch feeling faint!  For the transfusion Seth had to remain in the crib which is tough because he’s been getting more and more uncomfortable.  The nurse got him all set up and nicely put a pillowcase at the top of the IV tower so I couldn’t see what was hanging there.  I arranged his blankies in the crib so most of the tube was covered and we hung our together.  He managed to stay quite still for the two hours it took.  He even fell asleep for a few minutes in the crib which doesn’t happen very often.  As the day went on it was becoming quite clear that he was just really uncomfortable.  He wouldn’t eat anything and the only place he was happy was sleeping on my chest.  When the oncology team came around I mentioned this and they said he’s probably starting to develop the mucositis (basically sores all throughout his GI tract) from the chemotherapies he had last week.  His bum has also been really sensitive and he’s been screaming through diaper changes.  I asked if there was anything we could do at least to help him sleep at night.  The nurse ordered him some morphine and a cleanser and aveeno oatmeal treatment for his bum twice a day along with a good ole helping of desitin at every diaper change. 
One high point for today was the life support team came in and took Seth's footprints and made the cutest little Valentine for me to keep.
 
 
I was so happy when I saw our favorite night nurse Laura was covering Seth.  She came in around 8pm and asked if it was a good time to try the cleansing of his bum.  Sure why not!!! She came back around 9 with all the supplies and we started.  First an astringent is used to cleanse the area.  It sits in his diaper for about 20 minutes.  That is cleaned off and the aveeno oatmeal paste is applied to the irritated area and allowed to sit for another 20 minutes after that was all cleaned up we got ready for bed with some meds and a little morphine to help him get comfortable and get some good rest.  Luckily we were both able to get some good rest because Laura is amazing!
 
Tuesday morning around 3:30 Seth was fussy.  I held him for a while until he settled down and fell asleep before placing him back in the swing where he slept for about an hour before waking up clearly uncomfortable.  We called Laura for another dose of morphine and we both slept until 8am!!!  Today is Valentine’s day and I really wanted to get Seth’s picture done in his cute onesie before he got his NG tube placed but he was so uncomfortable I couldn’t bring myself to move him for changing once he settled down.  The nurse for the day explained the tube would be placed shortly.  Three other people arrived to help with the placement and I left the room and called Steve.  When I came back Seth didn’t seem too irritated but he was kind of rubbing at his face. 
 
 

Can't forget my other
little Valentine :)

Blown in oxygen is a fun toy!

Oncology came by on their rounds shortly after saying that Seth is in the thick of it now and everything he is presenting is normal and to be expected.  The goal now is to try and keep him as comfortable as possible.  They also mentioned some kids will pull out the NG tube and not to worry because they can be placed again.  Well he lasted a few hours before ripping it out!!! 
The one eyed love bandit :)
 
 
A new one was placed this afternoon after giving him a little break.  I know he’s hungry because I can hear his stomach grumbling.  Maybe once he realizes that  tube provides food he’ll leave it alone. He's getting his first feed right now so fingers crossed this one sticks!!
Hoping he keeps this one in and
gets the nutrition he needs.
 

 

Friday, February 3, 2017

Week One


Friday morning we headed into the clinic.  We were cautiously optimistic that today would be the day Seth begins treatment.  We arrived and Seth had his vitals done and there was no temp!!! Yahoo.  Dr. Wright came over to see us in the infusion area after his blood work was taken and said we would get started here in the clinic shortly while they got the paperwork submitted for us to be admitted to Children’s later in the day.  Fortunately, they had an open private room so we took advantage of that because we would probably be there until at least 5pm before moving over the 9NW at Children’s.  Seth was started on IV fluids and a slew of anti-nausea meds of Zofran, raglan, and Benadryl to minimize the effects once the chemo was started.  He will receive all of these and possibly Ativan for the foreseeable future to help combat any nausea he may have. 
Hanging out getting fluids
 
At 2:15pm the first medicine arrived.  This was pretty emotional for me and Steve but Vincristine is the fastest of all the chemotherapies Seth will receive and was administered through his central line over 5 minutes.  Next up was Cisplatin which arrived in a big brown bag.  Not exactly what you want to see hanging from your baby’s bedside but it is sensitive to light so they protect it with these bags.  That would run over 8 hours and make the trip over to Children’s with us later.  The nurses explained now that Seth has begun his chemotherapy his diaper will need to be changed every 2-3 hours to protect his skin from having the chemo sit on it and we need to wear gloves to change his diaper to protect our skin.  While we were waiting to hear his room was ready I noticed he was getting rather warm as he was sleeping on me.  Sure enough he had a fever!!!  They drew cultures, he was given Tylenol, and we spent a little longer at the clinic waiting for his temp to come down a little.  Jess from 9NW came to get us around 5:30 and we made our way over to Children’s.  Once settled in at Children’s Steve headed out to the car to get our essentials which includes Seth’s swing!!

Getting settled in our room
 
 
Seth had his dressing changed and we settled in for the night.  Unfortunately, due to his fevers and RSV diagnosis last week we are in isolation which means Seth has to stay in his room until we’re taken off of precautions (we are not sure when or if that will happen).  Our night nurse Laura was really awesome!!! She managed to do everything she needed to while Seth was in the swing and he only woke up once overnight to eat.
Saturday morning we had some down time before the next batch of chemotherapy arrived so I took advantage and did Seth’s 7 month photo shoot.  He was oh so happy!
 
 
Around 2pm the next two chemotherapies arrived.  Doxorubicin which is an orange color and once again had it’s own special brown bag that would run continuously over the next 48 hours and Cyclophosphamide that would run over 72 hours.  Again this was really emotional for me to see.  Seth was hooked up to this fancy attachment to his central line that allowed both chemotherapies and his fluids to run in together.  A little daunting at first but we quickly got used to it and covered it up with blankets to keep it out of Seth’s eye sight and reach.  He did fairly well all day continuing to eat and drink his bottles regularly.
Sunday he started to get a little fussier and uncomfortable.  His heart rate was elevated so an EKG was done but it came back that he has a normal heart rhythm it was just fast at the moment.  He also spiked a fever but never ended up with cultures or antibiotics.  Gramma and Grampa came to visit for a while and brought us some supplies J.  He got more and more fussy as the day went on which was really hard because it was very difficult to get him to settle down.  Usually the only thing that worked was me bouncing in the recliner until he fell asleep on me.  We asked if there was anything else that could be done but as of right now they said these are the side effects of the chemotherapy.  Since it was Super Bowl Sunday we did get Seth all dressed in his gear to cheer on the Patriots but he slept through most of the game which is good because he needs the rest.  This meant Steve’s cheering at the overtime win had to be very quiet!
 
Monday he was still really fussy.  Jenn and Bob came for a visit and thankfully brought the extra swing cover.  Luckily when Kate and Dr. Kieran were doing their rounds they saw how uncomfortable Seth was and this time when we asked if there was anything else they could do they said we could give him some morphine to try and make him more comfortable.   It arrived shortly after and even though it didn’t look like Seth loved the taste it seemed to give him the relief he needed so he could get some good rest sleeping on me for a few hours.  Kate also looked in his mouth to see if maybe the mouth sores had started early because he was so fussy and really wasn’t interested in his bottle.  She said she saw what looked like thrush on the back part of his tongue so he was put on mouth swabs to try and clear that up as well.  They also decided to do another flu swab to see if maybe that is what was causing the fevers.  The Doxorubicin ended at about 3pm so we were hoping that would maybe help with his fussiness.  The night nurse asked the doctors to switch his morphine to his central line so he could sleep through the night.  Fortunately he did get a good amount of rest at night.
Tuesday I woke up to Dr. Kieran checking in on Seth!  I guess we were all getting some good rest.  Dr. Kieran said the morphine seemed to be helping him be more comfortable so we could continue that as he needed it.  He also said due to the fevers and just overall not feeling well it was unlikely he would make it home this round which we had been prepared for from the beginning.  He also brought up the topic of the NG tube since Seth hadn’t been eating.  He explained it was an easy procedure that the nurses do at the bedside and would be used to make sure he’s getting the nutritional value he needs.  IV fluids have been ok for now but if he continues not eating this will be necessary to make sure he doesn’t lose a lot of weight and lack what he needs nutritionally.  We also want him to continue using his stomach muscles.  They will let us know when we reach that point.  I also asked when we can expect him to lose his hair more to prepare myself than anything else.  And Dr. Kieran said usually around the 2 week mark is when you’ll see a little on the pillow and then it will gradually become more and more.  Yesterday I started not feeling too well myself and later today the nurse came in and told us Seth’s swab had tested positive for the flu.  Our little man just can’t seem to catch a break!!!  He also had a fever so more cultures were drawn and antibiotics were given.  However this morning he was a little more playful and a little less fussy. 
video
 
His Cyclophosphamide was due to end around 2pm and the Patriots rolling rally was happening in Boston today so I was planning for both of those to end before heading home to spend some time with Sadie.  She has really been missing "her family" and has been asking for us a lot.
 
Wednesday he received his GCSF shot which is given as a recovery medicine to rebuild the immune system after chemotherapy is given.  He will have this daily now.  Seth will have today and tomorrow before getting more chemotherapy on Friday.  We still are not certain when we’ll be able to get the intrathecal chemotherapy in given his continuous fevers and not being able to be sedated as a result.  The doctors ensured us we will get them all in it’s just a matter of when.
He's getting really good at sitting up :)
 

Thursday, February 2, 2017

Delayed Again

So Seth didn’t get to begin his treatment today.  We arrived at the clinic right at 8 to have his blood work done before heading over to Children’s for the OR check in.  When they took his vitals he had a temperature and right away we knew this didn’t bode well for anything happening today.  He had the rest of his vitals taken and we were put into an infusion room for the nurse to do his bloodwork.  A repeat temperature and vitals were taken and his temp was even higher.  They paged Dr. Wright to see what the plan was.  The nurse did the requested blood work and also drew a blood culture because he had a fever.  Dr. Wright came and I could tell that today wasn’t going to be the day.  She said this isn’t good and they won’t put him to sleep with a fever.  After speaking with her colleague it was decided we would return to clinic tomorrow morning and see how he’s doing.  If he has a fever but looks ok we’ll begin chemo but the intrathecal they were hoping to administer first will have to wait, if he has a fever and looks bad he’ll be admitted to be watched, and if he doesn’t have a fever I believe we’ll be admitted to begin the chemotherapy through the line as well.  They will also be checking to see if the blood culture comes back negative at the 24 hour mark. If it doesn’t then we’ll have to wait until the 48 mark.
They aren’t sure what is causing the fever.  If it’s left over effects from the RSV, he caught something else, or maybe the stomach bug because he was sick twice yesterday and had a DOOZY (Steve gagging and the loss of a onesie – sorry to the entire clinic who had to use that bathroom for the remainder of the day) of a diaper this morning.  At any rate another setback.  Not sure when he’s going to catch a break but we really hope it’s soon!!!
He was given IV fluids, the 24 hour antibiotic, Tylenol, and we were sent over to Children’s imaging to have his vent check Dr. Goumnerova ordered yesterday.  They also sent us home with some anti-nausea medicine in case he wasn’t feeling well later in the day.  Luckily they did because around 4 we attempted a bottle and he immediately started gagging and throwing up what he could.  I think it’s partly because he’s too little to get the gunk out when he’s coughing and partly because he just feels crappy.
Here’s hoping tomorrow is the day and not another delay!

Wednesday, February 1, 2017

Finally!!!!

Tomorrow is the big day, Seth finally begins his treatment!!  With everything we’ve been through it didn’t seem like this day would ever come.  I really hope I don’t jinx us by saying it out loud and for the world to see.  Tomorrow Seth is scheduled to have a bone marrow sample taken in the operating room along with a lumbar puncture (because the brain reservoir isn’t placed yet) to begin the intrathecal chemotherapy and will become inpatient to administer the remainder of his chemotherapy. 
We had our pre-op appointment today and we thought for sure they were going to say because of his cough and congestion we had to wait again.  Thankfully the anesthesiologist said even though he is coughing and stuffy his lungs sound clear.  It also made her feel better that Seth was under anesthesia last week for the flow study before the confirmation of the RSV came back.  If it was something like a hernia or more routine procedure they would have postponed but given the circumstances, how long we’ve waited already, and the need to get treatment started we are moving forward.
After pre-op we went for a follow up with Dr. Goumnerova.  She said he looks great and will continue to watch the fluid collection that continues to show after the craniotomy.  She said it isn’t unusual given the procedure, his age, and where in the brain the procedure was done.  We will have a vent check (mini MRI) tomorrow so she can see what’s going on in there and while Seth is admitted over the next 6 weeks we can figure out when it would work to have the reservoir placed.  This will at least limit some of the sedations Seth has to have so we are anxious to have this placed when it is safe.
Wish us luck tomorrow and please keep Seth in your thoughts as the regimen he’s about to start is extremely aggressive and takes a toll on the recipient.  We’ll keep you updated as we can but the focus will be on Seth and Sadie as we will be separated for some time and then Steve and I will be alternating back and forth who’s in the hospital once Seth gets further into the treatment.

Thursday, January 26, 2017

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.

Thursday, January 19, 2017

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 1st and 4th 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.