Weekend Home

Seth came home on Wednesday.  We were really happy to have him home although he was very cranky and really just wanted to be held mostly while standing which meant a back breaking weekend for both Steve and I.

Enjoying some jumping



Sadie had a her dress fitting for Uncle Jason's wedding which required bribery with a donut in order for her to take the dress off!  She also wanted to take Seth's high chair for a while and play.

 

Breakfast with the little lady after she had her best dance class yet.  And she tried bacon and liked it!!

Playing in the ball pit which has had the longest life of any ball pit of it's kind known to man.

Sunday we went to the mall early to see the caring Easter Bunny with the kids.  Sadie hesitantly gave him high fives and hugs this year but still didn't want to sit with him alone or Seth so a family picture it was.  As you can see Seth wasn't a big fan of him as well.

After pictures we did some coloring, said hello to some puppies, and then the little man decided to pull out his feeding tube!!  Fortunately, when we got home Seth took a bottle.  Since we were going back in Monday morning for the ommaya and G tube placement we were comfortable foregoing a few of his meds that taste awful and he won't take by mouth.  It's always such a relief when the tube is out and it was obvious Seth felt the same way because he was a little less cranky and we were able to put him down and play a little bit more.

 

Sunday night Steve and I got out for the night with Jenn and Bob to a comedy show in Boston thanks to my parents for watching the kids.  It was nice to get out for a little bit and laugh a lot even though the seats were VERY TIGHT quarters!  Thanks for a fun night!

85 Million!

We are so relieved Seth had a successful stem cell collection on Tuesday getting a total of 85 million cells compared to the 2 million we got last time.

Here he is the day after playing with Sadie.

Looking forward to a weekend at home before heading back in Monday for the ommaya and G tube placements and the start of his next round of chemo.

Pure Fun

It's not easy to come by times of pure innocent fun during everything we're going through but on Saturday Sadie and I were able to attend Gabriella and Bob's birthday part after visiting with Seth and these images were the result:

Who knew rolling a ball in the house could still render such pure joy?  So happy to have Sadie through all of this to provide perspective and keep things fun.  I mean look at her face, she's having the time of her life! 😁

Week 6

Seth has been neutropenic since St. Patrick’s Day.   

On Saturday morning he received platelets again and when Dr. Chi came on rounds we discussed pain management and just keeping him comfortable while we wait for his counts to come back up with morphine every two hours.  Sunday he seemed to be really uncomfortable so we discussed a PCA for morphine to keep him comfortable.  He did spike a fever later on and was started on antibiotics as well as having the PCA set up. 

 

Monday was the official start of week 6 in the course of treatment.  Dr. Wright was fortunately on in patient rounds this week.  She immediately noticed how awful his mouth looked with the mucositis, sluffing, and his tongue was all torn up.  He received his Vincristine later that afternoon but we mainly focused on keeping him comfortable and lots of cuddling.   Tuesday his ANC was still zero, he received platelets in the morning and was scheduled for another kidney test.  They did the dye injection in the late morning and later had the needed blood draws.  Unfortunately, he spiked a fever and cultures were drawn to make sure he didn’t have an infection.  He also got really sick vomiting and unfortunately his feeding tube came out in the process.  We had been keeping him on a continuous slow feed over the past day or so and had worked our way to 40ml and hour.  I’m not sure if it was the feed or the mucositis that made Seth sick but either way it’s so hard to see him that way. 

 

Wednesday Seth was scheduled for an MRI.  We weren’t sure if this MRI would happen because he did have one after the last course of treatment but it was necessary to see if radiation was going to be a part of his treatment.  I also wasn’t confident they would take him for the MRI because he spiked a fever yesterday but fortunately they did.  Dr. Wright came by to discuss the results after and I was so happy to hear that the tumor on his eye is now barely noticeable and the big tumor shrunk almost another half a centimeter.  With all the pain I’ve seen Seth going through this week it was nice to have some good news.  I also saw the images from the first MRI to now and it’s amazing to see the progress Seth has made so far.  He still has a very long road ahead with this protocol but seeing results makes it slightly easier.  Because the tumors seem to be reactive to the chemo he’s been receiving we will not being doing radiation at this time.  We knew that was most likely the case due to his age.  Dr. Wright did mention she can see his fluid collection in the MRI, and because it keeps coming back, we need to keep an eye on it and she reached to his surgeon, Dr. Goumnerova, to see her thoughts on it. 

While Dr. Wright was wrapping up Seth’s nurse brought in his blood transfusion nicely concealed in a sheet for me to hang on his IV pole.  We made it sitting in the chair for three hours without knocking it off and without me fainting J

 

Seth continues to have low ANC numbers below 100 but we're hoping they work their way up this week so he can have his next stem cell collection.  Thursday Seth had a repeat hearing test and luckily he was able to do this while sleeping on my lap.  I was happy to hear that there have been no changes in his hearing and he remains at the same place he was before starting treatment.  I’m sure we’ll have many more hearing tests in the future but we take all the wins we can as they come!!!  Thursday night Steve and I switched places so we can both spend some time with both kids.   

 

Saturday we had some family time. Sadie was so happy to go visit brother at the doctors and more importantly to get pizza and cookies for lunch.  While snuggling Seth got his feeding tube out, one wipe of the nose on my shoulder and it didn’t stand a chance!!  He’s a determined little guy but I was a little happy Sadie could play with him without having to worry about one tube.   It’s always great to see the kids together and Sadie lights up when she gets to see Seth.

 

Steve and I have been discussing the idea of a G tube rather than an NG tube like he’s had and we’ve been able to schedule that for April 3^rd along with the placement of the long awaited ommaya reservoir for his intrathecal chemotherapy.  The GI nurse came to show me how it works on a doll earlier in the week and general surgery came as well to answer any questions beforehand.  He will be admitted after these procedures and begin his next round of treatment.  We are looking forward to Seth having both his face and arms/hands back for playing.

Now we wait for his ANC numbers to come up and recover enough to have his next stem cell collection.  We are hoping it will just have to be one day but there is the possibility of it being two.  Once that’s complete we are hoping to have at least a few days together at home before Seth is admitted again on April 3^rd.

A Message From Dada

Sitting in the hospital channeling my inner dr. suess i wrote this for seth while he was napping:
                                                      
i cannot sleep during the day
i cannot sleep at all i say
i cannot sleep in dark of night ...
i cannot sleep under stars so bright
i cannot sleep on pillows soft
i cannot sleep up on a loft
i cannot sleep on bails of hay
i cannot sleep at all i say

I've tried it lying in a bed
I've tried it standing on my head
I've tried it in a parking car
I've tried sitting at the bar
I've tried it in a hotel room
I've tried it laying in a tomb
i cannot sleep out by the bay
i cannot sleep at all i say
ive tried it with the TV on
I've tried laying in the lawn
I've tried it with a radio
I've tried laying in the snow
I've tried it in a sleeping bag
I've tried it saluting the flag
i cannot sleep in any way
i cannot sleep at all i say
bed of roses, bed of nails
flip a coin heads or tails
a wooden slab, a water bed
nothing seems to clear my head
counting sheep, or sounds that soothe
on sheets of silk oh so smooth
for just a wink any price id pay
i cannot sleep at all i say
i cannot sleep thinking of you
and all the pain youre going through
i want to take it all away
hold you tightly every day
i will not rest i vow to you
til the pain is gone I LOVE YOU

 

 

Week 5

Monday we headed into clinic for our 11:30 appointment.  This would be our first official Monday clinic visit since Seth was diagnosed and this will be our normal clinic day so I was interested to see how it all worked.  We were blessed with another blow out diaper on the ride in by Seth so we tackled that before checking in.  We were taken back shortly for vitals and weight, the nurse then called Seth back for blood work, and then I joined Steve and Seth in an exam room for cap changes, dressing change, and the feeding tube stickers being changed.  Seth wasn’t a happy camper with all of this but I think he does really well all things considered. 

 

Back in the waiting room we had enough time to eat our sandwiches before being called back to meet with the Dr. Eng and Dr. Wright.  They said he was looking great, his labs were good, we would plan for the intrathecal later in the week and to call if he spiked a fever.  The visiting nurse would be starting labs later that week to watch his counts and we would probably have to come to the hospital as well to monitor when he would be approaching the time for another stem cell collection.

We then went over to infusion room 4 for his chemotheraphy.  This was just the 5 minute Vincristine so I thought this would going to be a short visit but I must have been dreaming.  Because it was close to 4:15pm before we started that.  Fortunately, it was a friendly face from 9N who was giving Seth his chemo.  Jess was the nurse who showed me how to flush Seth’s line when the original one was placed and she also picked us up to come over to 9N on Seth’s first day of chemotherapy.  Always nice to see a friendly face during this process.

 

Earlier in the day we had made the decision that Steve would also learn how to give Seth his GCSF shot because of the blizzard that was expected the next day.  We didn’t want him to miss a dose and we didn’t know if the visiting nurses would be out.  He practiced on a lemon and then gave Seth his shot and did great!  Good thing he learned how because the nurse had left us a message saying she was going to come between 9 and 10am which was way too early for Seth to receive his shot.

It was a long day and of course we got out right at rush hour.  We took the back roads home to keep moving and arrived around 6.  Sadie was happy to see all of us and we were happy to be home.  I guess clinic days won’t be quick appointments.

 

Seth woke up a few times during the night and just seemed a little more uncomfortable than he had been.  We checked his temperature early in the morning and it was 99.8.  This isn’t a temperature but he had been ranging in the 97-98 range and with the storm coming we wanted to make sure he didn’t spike in the height of the storm.  Steve called the doctor and we all agreed together it was best to have Seth come in the ER and then be admitted.  During all of this Seth also got sick during a feed and his tube came out a good amount.  As a result we had to pull it so formula wouldn’t get into somewhere other than the stomach.  We got everyone all packed up and they were off before the storm was too heavy.  It was disappointing they had to go in when nothing was wrong but set our minds at ease that he was where he needed to be if things did deteriorate quickly.

Waiting in the ER for a room

 

This morning Seth received platelets as they were low in his blood work and Steve noticed the injection site from his shot the day before was red and had a bump.  The doctor said this could be a result of the low platelets because bruising is a common symptom of low platelets.  He will most likely get more tonight and maybe even tomorrow morning.  He is due to get his intrathecal chemo tomorrow and they need his platelets to be at 50,000 to proceed.  Here’s hoping they are high enough to get the intrathecal safely and not having another set back.  His counts are dropping and he is close to being neutropenic with an ANC of 800 so that is another reason he just hasn’t been feeling well.  I hope he has a restful night and Steve can get some rest too.

 

Week 4

After a lot of waiting around yesterday Seth's chemo finally started around 9pm.  The regimen this week is similar to the first week of the previous round with one chemotherapy being swapped out for another.  Steve stayed with Seth in the hospital this week so I could be with Sadie and also go to work.  It’s always hard being on either side, the hospital or home, because you’re always missing someone and both places are exhausting in their own ways.  Overall Seth was a trooper throughout the week Dr. Wright even mentioned him going home later in the week in our initial meeting on Monday which I never expected.  One plus was that Seth got his first intrathecal chemotherapy via lumbar puncture (due to all the scheduling mix ups, snafus, whatever you want to call it) on Thursday.  Seems crazy to say that is a positive but getting Seth through these treatments means he’s further into the process and hopefully onto the road to recovery.  Thursday we found out that Seth would be coming home on Friday.  Now the discharge process is always a lengthy one so I worked from home in morning and then packed Sadie up to head in to get Seth.  She is always so excited when she gets to see him after being separated for a long time. 

Friday morning Seth had taken his feeding tube out again.  When Sadie and I arrived they were just about to put in a new tube so we met Steve and took a fieldtrip to the pharmacy to pick up his prescriptions.  We strangely enough ran into Sadie’s eye surgeon who we had just seen the day before for a follow up.

 

 

 

I had told him about Seth and was happy to hear that he also works with cancer patients and offered to come evaluate Seth whenever we needed him to.  He has been great with Sadie and if the time come and Seth needs the tumor behind his eye or his eye examined I’m relieved to know Dr. Shah can do it.  After a short discussion we headed to the cafeteria to get tater tots but of course we hit it right when they were in between meals.  So off to Aubon Pain for cookies it was.  We had some time to play in the room before getting discharged in the late afternoon.

 

 

 

We unpacked and just enjoyed a weekend of being all together again.

 

 

 

 

Here We Go!

Sunday night I packed everything up for Seth to head into the hospital for round two of his chemotherapy.  We were out the door around 6am to make it in time for our appointment.  Unfortunately, Sadie was already awake which always makes leaving a little more difficult.  She doesn't fully understand what's going on but she knows now that when we leave we may not come back for a while when Seth is at the doctors.  She often says "I hope you come home soon Mama" etc. which breaks your heart.  But we are doing all of this so we can all be home soon together.

We arrived at the clinic before the doors were even open.  Got in right at 7:45am when the doors open and were quick to get our vitals done.  Not before a photo op with the adorable puppy hat my sister had made for Seth 😃

After vitals were done gave Seth some breakfast before him and Steve headed back for blood work.  He also needed his dressing changed so we and two nurses worked on keeping him somewhat still for that.

Then it was back to the waiting room to wait for the doctor to call us back.  It seemed to be taking forever.  I think it was close to 10am when we finally got called back.  Dr. Wright looked a little perplexed and asked us if Seth was sick.  He had been relatively happy over the weekend was doing much better and was getting less and less congested since getting home so we weren't sure why she was asking.  His white counts were up to 24 which normally means the body is trying to fight off some type of infection.  I immediately thought another set back, but she said it could be a result of the GCSF shot but would run a flu swab as a precaution.  Which meant exactly that, we would be on precautions once we got to the floor until that test came back.  She did say that as long as we were comfortable moving forward with treatment we would continue on.  The lumbar puncture for the intrathecal he has missed thus far would be scheduled for later in the week.

We were placed in an infusion room to wait for treatment to start. 

Seth fell asleep and had a nice long nap while we waited.  The nurse came over later and did the flu swab and told us he wouldn't be starting the chemo at the clinic because of the precautions needed and they were waiting for a room on 9N to be ready for us but it could be a little while.  Surprisingly not too much later she came by and said the room was ready and we could head over.  We were surprised when we arrived and they didn't take us into the usual single room area but were instead placed in a double room.  Now because he was on precautions we wouldn't have a roommate for at least 24 hours but if it came back negative that could change. 

Thankfully a single room also opened up where we are usually placed thanks to one of our favorite nurses Michelle discharging a patient and grabbing it for Seth!  We moved over there and then we waited, and waited, and waited some more. 

The nurse explained that the chemo was delayed and we probably wouldn't start until around 6pm and later said they are running behind and it would be around 8pm.  I was hoping to be there with Steve and Seth for the start of treatment and spend a few hours before heading home to be with Sadie but that plan wasn't going to work out.  I headed out around 7:30pm and I didn't hear from Steve that it started until 9pm.  At least we're under way for round 2!

More Family Time

We never managed to get the scheduling just right for Seth to be admitted this week.  I checked in numerous times with both neurosurgery and the clinic to see what the plan was but it never seemed to fall into place with an opening for Seth to have his ommaya placed.  After a talk with Dr. Eng there was a tentative admission date of Thursday, but nothing firm yet.  The clinic called on Thursday around 11am asking if we could be there at 12:15pm, that just wasn’t possible both Steve and I were at work and I hadn’t packed up anything.  Had they called Wednesday we could have been ready to go.  Then they mentioned starting on Friday but I brought up how Dr. Wright said the stem cell collection window may have been missed from starting on a Friday last time and a Monday start day may provide a more successful collection.  I really didn’t want to start on Friday so the plan was made to come to clinic Monday at 7:45am which meant we had another weekend together as a family. 

 

Friday while my mom was watching the kids Seth decided he had enough of his feeding tube and took it out!  We all didn't want it to happen on our watch but were relieved we could now have some time without it!  Seth was eating and drinking his bottles well so we didn't have to worry about having another one placed right away.  He's seems very happy and proud of himself!!

 

Saturday Seth turned 8 months old so of course we had to have our monthly photo shoot.  Sadie of course wanted to be a helper.  So cute together but trying to get Seth to cooperate these days is getting harder and harder never mind having my little 3 year old helper.  But I got some good shots.

 

 

 

 

 

Here are some pictures from the Sunday together and with some visitors we had.  Chloe may have wanted to take Seth home with them.

 

It was so nice having some time home as a family but we are looking forward to getting Seth started with his treatment again so we can be that much closer to him being healthy.