Week 8

Seth came home late last week and we've been enjoying time together as a family.  His G tube is working out well for feeds and giving his meds.  He has been tolerating everything pretty well and only gotten sick a few times.  He does still have some serious poop power and we go through a lot of outfits a day and a LOT of Zout (my favorite stain remover spray).

Getting settled in at home.

 

Enjoying some nice weather outside.

Sadie enjoying an Easter egg hunt and loving her Kitty face.

Monday we had our weekly clinic day.  Seth was schedule to have his Vincristine and also have the first intrathecal chemotherapy through his new head reservoir.  We headed out early as we always do for the day to make sure we were on time.  His first appointment was at Children's to have his G tube checked and make sure everything was healing up nicely.  Fortunately, everything is looking great.  We have to keep taping it for a total of 6-8 weeks to make sure it heals up well and doesn't fall out during that time period.  After that we can stop taping it all the time which will be nice to give him skin a rest because he has such sensitive skin.  The nurse also showed us how to check the water level of the balloon each week.  This is very important because this is what keeps the tube in his stomach.  Fortunately, it's not too hard and we use some of the same supplies we're already familiar with to do it.  We will have another follow up at 12 weeks to have the tube replaced, which will be done every 3-4 months.

 

There was a good 3 hours in between his GI appointment and his scheduled clinic time so we took a little walk outside because it was a beautiful today.  Crazy how we had a blizzard last week and it's nearly 80 degrees now.  Gotta love New England! 

 

A few hours later we headed up to clinic and Seth's vitals and blood were drawn.  Funny how the staff there now know that I hang in the waiting room when his blood is being drawn and come get afterwards.  While waiting for those results we met with Dr. Eng and Dr. Wright.  Overall Seth is looking really good and we were looking forward to start getting caught up on his intrathecal treatments and use the reservoir rather than having to be sedated.  We were planning to send Seth back with the doctors and nurses for the procedure because he does have to be held still to access the port and the chemotherapy is then pushed manually over 2-5 minutes.  I've been a part of procedures/tests where he has to held down to remain still and it's awful.  I hate seeing him upset and as much as I don't want to see him like that I know it's going to help him in the end.  I'll be happy to swoop him up afterwards to assure everything is going to be alright rather than being a part of the holding down.  After talking with the doctors we headed out to the waiting room while the chemo's were put together.

 

Playing with toys while we wait.

 

 A little while later both Dr. Wright and Dr. Eng came to talk to us in the waiting room.  His platelets were low and at 19.  According to the protocol Seth couldn't receive the intrathecal treatment when they were so low, they need to be at least 50.  We had a few options: he could receive a platelet transfusion and push forward with the intrathecal knowing there is a risk of bleeding, receive a platelet transfusion and come back tomorrow for the intrathecal, or receive the platelet transfusion and just wait until next week for the intrathecal.  We are already so far behind with this portion of his treatment we hated to wait but also didn't want to risk additional bleeding and possibly damaging his new reservoir so we opted to have platelets give today and return Tuesday.  We headed back to an infusion room and waited for the platelets to arrive.  About an hour later Seth was receiving the platelets and when those were done running he received his Vincristine.

 

Mama enough with the pictures, just let me get my platelets.

 

 

It was a long day leaving the house at 7am and not returning until close to 7:30pm. 

 

Tuesday morning I headed to work and Steve took Seth into clinic with his mom for treatment. 

Playing together before heading to clinic.

 

Around 1:30pm I got a call that his platelets were 9!  What?!?!? He just got platelets yesterday and now they are lower than before?  Ugh, this little guy just can't catch a break!!!  So more platelets were on the docket for today and again the intrathecal would be postponed. 

 

 

Steve was given options of coming back tomorrow to be checked or waiting until VNA comes to the house Thursday to do his blood work and see where he is.  Again, because of the high risk of bleeding and bruising and knowing that in past rounds he's needed both platelets and blood transfusions regularly as well as Dr. Wright mentioning she thinks he going to drop within the next 48 hours we decided to take Seth back to clinic on Wednesday.  We'll have to see how things go today.