Waiting

Monday came and no call from anyone at the hospital.  Finally around 3:30 I emailed the neurosurgery scheduler to check in and got a response they were still working on it and she would let me know as soon as she heard anything.  And today still no word so I put a call into Dr. Wright.  Her fellow called back saying they still hadn’t heard anything from neurosurgery and we had a tentative admission day of Thursday.  I expressed my concern of putting it off longer and getting close to the Friday start date again and the possibility of having another small stem cell collection when the time came.  I hate to put Seth through that long process again knowing it’s not going to be successful.  I also asked if the Ommaya placement isn’t done will they do a lumbar puncture to get Seth the intrathecal chemotherapy.  We are already behind on these so we would like to work to getting caught up.  So for now we wait and assume we’ll get admitted on Thursday to start his next round.  Only time will tell …

Time at Home

We enjoyed Saturday together as a family on the swing set in the yard and also a local playground.  A little rain didn’t stop us and we got to see a double rainbow.  Here are some pictures from our time together:

 

The only thing that would make it better was if Seth decided sleeping was something he truly enjoyed, especially at night! :)

 

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:

https://www.mythirtyone.com/1753134/shop/Party/EventDetail/9772812?verify=true

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:

https://www.youniqueproducts.com/livingalashlife

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.

Week Three

This week of chemotherapy started with some good news, Seth’s ANC number was up to 60.  Doesn’t seem like much but we’re heading in the right direction for him to start feeling better.  He also got his Vincristine chemotherapy and I also noticed he’s beginning to lose his hair.  Saturday was the first day with no fevers which is also another huge win!!  By Sunday his ANC was up to 1,400.  His hemoglobin was low again and therefore he got a blood transfusion in the wee hours of the morning.  Luckily Steve was able to come back into the hospital now too.  While I always miss Seth when I’m home it is nice to get away, spend some time with Sadie, and recharge.  The hospital days are long and we’ve been unable to leave the room due to being on precautions so it makes for some long days.  Unfortunately, after leaving the hospital Steve let me know the nurse gave Seth his Zofran has a shot by mistake and not the GCSF.  The doctors came in and said he should be fine.  Zofran as a shot usually goes into the muscle where the GCSF usually goes into the fat so they would have to watch him over the next few days and he would skip a few doses of Zofran because it would take longer for his body to absorb.  He did then get his GCSF shot.

Monday was a good day!! Seth’s fluid collection seemed to disappear overnight and we finally got to all be together as a family! It had been over 2 weeks since Sadie last got to see Seth so I was really excited to have everyone together.  She took a little bit to warm up to being there but after a few laps around the floor and a fieldtrip to the cafeteria we had a great lunch as a family, the kids played together, and we just enjoyed being together. 

 

 

When it was time to leave Sadie was upset that brother wasn’t coming home with us and her family wasn’t together.  Breaks my heart to hear that but we explained that Seth might be home soon.  The doctors had been telling me it could be Wednesday so we were hoping for a little time together at home since his Ommaya placement was penciled in for Monday.

Tuesday was a big day … stem cell collection.  I thank God Steve was healthy enough to get back to the hospital for this because I don’t think there’s any way I would have make it through it!!  They were transferred up to the ICU late  Monday night so Seth could be more closely monitored due to the RSV and flu he had and was still having some side effects from.  They were able to get 2 million cells but unfortunately they wanted 10 million.  They wouldn’t try again on Wednesday as previously discussed.  Dr. Wright explained they may have missed their window for a greater collection due to the holiday weekend.  It still boggles my mind that in one of the leading children’s hospitals in the world things are only done at certain times … stem cell collections not on the weekends, flu swab testing only at 8am, CSF flow studies only on Thursdays or Fridays.  At any rate they will try again after the next round of chemo and once he starts recovering again.  We have to hope that they hit the scheduling just right and the best days don’t fall on the weekend!

 

Seth had another blood transfusion on Thursday because his hemoglobin was low.  He also got his next flu shot (let’s hope we don’t have another positive flu) and he started taking bottles and eating food again not through the tube!!!  It was looking like Seth was going to get to come home Friday.  We were all so excited and Steve was looking forward to some time away from the hospital.  Friday came and Dr. Goumnerova visited Seth because they were working on scheduling the Ommaya placement the following week.  She said he looked great

but she wanted an MRI before doing the placement and that unfortunately meant Seth would not be discharged because they don’t do sedated MRI’s on the weekends for outpatients.  As a result he had to stay another night and have the MRI Saturday morning.  Seth’s GCSF shots were also stopped in preparation for surgery next week.

Sadie and I went to dance class Saturday morning and then headed into Boston to pick up Steve and Seth!  We did our laps around the floor, got cookies from Aubon (the café was closed), and waited for discharge.  We did run into Dr. Wright in the hallway, she got to meet Sadie and told me that one of the tumors had shrunk half a centimeter.  We’ll take it.  With all the crap, obstacles, and friction we’ve had through all of this we’ll call that a win!!  Dr. Wright said she would call us as soon as she heard about the surgery and thought it would be Tuesday.

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.

 

 

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. 

 

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 :)

 

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!

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.