Ommaya and G Tube

This morning we headed into Children's early to have Seth's ommaya reservoir placed which we have been waiting so long for. 

 

While we were on our way in Sadie was at the dentist and for the first time she sat all by herself in the chair and had her teeth cleaned!  She still tried to get extra toys for the treasure chest but I'm so happy she sat by herself.  Gramma may be on dentist duty from now on.

 

 

 

Fortunately we were able to coordinate the ommaya with general surgery and have his G tube placed under the same sedation.  It's nice when things work out like that.  He was taken back about 10:30 for his scheduled 11 am surgery.

Dr. Goumnerova went first placing the ommaya in his head.  We talked with her before surgery and went over the procedure which we had heard of and talked through before but she also mentioned that she was going to try to build up the area around where the stint is placed to try to reduce the possibility of the fluid collection that seems to come and go as Seth continues with his treatment.  Unfortunately, she was not able to do this.  She explained that a baby's skull is so thin it could be cut with just a pair of scissors and there wasn't enough to work with to build it up.  The stint may reduce the flow of fluid but we'll have to keep an eye on it.  I asked if this is something that will clear on its own as he grows and his skulls grows.  She said that is the hope but nothing is guaranteed.  When he is older we can explore other options and possible repairs if the fluid collection continues.  We will not be able to use the reservoir for his chemo this week but hopefully next week it will be ready for use after having some time to heal.

 

The G tube was then placed by general surgery.  We met with the surgeon beforehand and walked through the procedure.  He had another surgery right after so we wouldn't see him again today but they would check in on Seth when he's on the floor tomorrow during rounds. 

 

We finally got called back to see Seth around 2pm.  He was extremely cranky.  The bandage on his head is the same as the craniotomy but much smaller.  I'm anxious to see how noticeable it is once healed and the bandage comes off.  We're thinking since we're used to seeing him with the fluid collection it may look a little like that.  Even though we were looking forward to the G tube so he could have his face and arms back it wasn't easy seeing another "accessory" on my little guys torso.  I'm sure after a while it will become second nature like the central line.  After a few doses of morphine, some valium and some awesome nurses who bounced, rocked, and pushed him around the PACU in his stroller he seemed to calm down.  The nurses were also nice enough to let us go get some lunch/dinner since Seth's room wasn't going to be ready for hours on his regular floor.

 

After eating we headed to the car to get the bags and rock n play to go to the room with Seth.  We were able to get upstairs a little earlier than expected but just before being wheeled up Seth finally got to have something to eat.  Neurosurgery gave the green light right around 6:30pm.  That is one thing we weren't aware of.  Seth had to wait an additional 6 hours after surgery before he could eat anything.  When we arrived to 9NW our new home away from home all the nurses were excited to see Seth.  He was still pretty cranky so we did a lot of laps around the floor.  We even ventured over to 9 East which gave us a bigger loop to travel.  It was opening day at Fenway so I was waiting for traffic to die down before heading home.  Just as we were about to give Seth more to eat since we started him with just 3 ounces and he was doing well he got sick and lost what looked liked everything he had taken.  So he will be on a slow continuous feed through his G tube overnight and work his way up to bigger boluses like he was having previously and hopefully get back to eating by mouth again.

 

Before heading home I had to grab a few pictures of the little man because he is such a trooper and how can I resist taking pictures when he's so adorable?

 

 

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.