Packing Up and Heading Out

This morning Brendan and I packed our stuff and loaded the car. (Wait, did I imply "we"?  I mean, "I packed our stuff and loaded the car.  Brendan read his book.  He didn't care if he packed because the longer it took me, the longer he could stay home!)

 Having nine children has helped to prepare me for such a feat. I've hauled many a diaper bag for many, many years!  The question I keep asking myself now is, "Why does it take this much stuff for just one kid?"

 Pillows and blankets are a must since Brendan usually gets cold, or gets a headache in the car and needs to lie down.  There are also snacks for when we get caught here or there and can't get a bite to eat (like today).  After getting caught in traffic for over an hour last week, I came prepared today with books, games, music, and other activities to keep Brendan busy in the car.  Distraction is the key to keeping his nausea down.  (But yes, you can see the blue bags there too, for when distraction doesn't work.  We've learned to always keep the bags on hand -- in the car, in my purse, at home, everywhere.)

 It takes boxes to tote around the medical supplies we don't use, but may need.  There are extra NG tubes, port supplies, tape and dressing supplies, just to name a few.  We only need them when we don't have them -- so we try to always keep them close.

 In there is a case of Ensure Extra (extra calories and protein) to make sure he's getting enough calories, juices to keep him hydrated and fed, school books, humidifier (since everything in his head and mouth are dry with the radiation), extra clothes (because we never seem to know how long we are staying anywhere for sure), toothbrush, fluoride rinse, dry mouth rinse, biotene toothpaste, and lots of anti-nausea medicines (which we haven't had to use this weekend- yippee!)  Also in there are all the feeding tube supplies -- IV pole, pump, bags, and containers of ensure type food.  Now that it has turned cold and wet, we keep boots, gloves, and coats in the car too.

My purse also has to be packed with everything we might need when we are away from the car--(like at the Huntsman Cancer Institute).  I need Tylenol for Brendan's killer headaches after radiation or clinic, more blue throw-up bags, lotion for dry hands and feet, Zofran (for nausea), skin numbing cream and hot packs (to put over Brendan's port after radiation as we head to Primary Children's. -- Putting the cream on the skin and covering it with a hand warmer saves us 45 minutes of sitting  in the clinic waiting for the skin to get numb before they put his port access in.  This way they can do it right when we get there.  But I have to remember to keep it in my purse so we have it when we need it!)

When I finally got everything packed into the car, it was time to head to Salt Lake.  As we left, the snow stopped falling and it was an easy drive all the way to Salt Lake.

 We made good time to the Huntsman today and Brendan picked the 4th elevator-- the one he thought would open first.  I picked the 2nd.  We were both wrong today.

 We had a little time to work on a puzzle before being called back today.  Someone was nice enough to leave the puzzle just like we left it last Wednesday.

 Every day when Brendan goes back to the vault for radiation he has to tell the radiation therapists his name and birthdate.  He's always giving them a bad time for not being able to remember, even though they do this every day.  They finally had to explain to him that it is one of the procedures they have to follow every day before they do his radiation therapy.

 Outside the vault they keep a close eye on Brendan via monitors.  That's him on the screens.

After radiation, we put the numbing cream on Brendan's chest and headed over to Primary Children's Hospital for Brendan's clinic visit.  He's weighed (he gained 2 pounds since last week) and his vitals are taken.

 Then we wait. . .

 Then we go to the "port room" to get his port accessed and his blood drawn.  Brendan did much better today dealing with the anxiety of having the needle pushed into his port.  It helped to have a child life expert there to talk to him and keep him distracted.

Then we wait again. . .

Lucky for Brendan, the child-life expert brought Brendan an xbox game to play in the room while we waited for the doctors.  That was great since we spent 2 1/2 hours waiting for everything to get done and everyone talked to.

Brendan's blood counts are back up.  The platelet count and red cell counts are slightly lower, but not much.  Not understanding all this yet, I asked, "Does that mean the chemo didn't work as planned - meaning killing cancer cells?"  Answer:  The chemo worked fine.  The blood counts went down then back up quickly since this was his first chemo round and his bone marrow has not been stressed before.  Apparently, it will get slower getting blood counts back to normal with subsequent rounds of chemo. The bone marrow can get "tired."  So with his blood counts looking good, Brendan won't need more blood draws done until next Monday right before he is given another round of chemo.

 With Brendan doing so well, they won't put in a "G-tube" (feeding tube inserted into his abdomen directly into the stomach) because of the additional risk of surgery.  They feel he can make the next 4 weeks of radiation and 1 more round of chemo just fine with the NG tube.

After radiation and clinic, Brendan had a terrible headache!

He was glad to get to Farmington and find that Zoe was glad to see him!

 Brendan took it easy for a while, until the physical therapist showed up.  Brendan was shown some more exercises to do to strengthen his neck and stretch out his neck muscles that were cut and stretched during his neck dissection.  The physical therapist showed Brendan the scars on his own neck.  Five years ago, he had a blood clot and they cut him open from his neck to his shoulder.  He could relate to a lot of the stuff Brendan has been going through.

 Mondays are always busy days, and Brendan is always very tired at the end of them.  Tonight he snuggled up with Zoe, laid his head on my lap and we watched "The Forgotten Carols."  It made me think that maybe, just maybe, I might begin to feel a little Christmas-y soon.  Somehow, I'm still stuck back at Halloween.  But Brendan has enough Christmas spirit for the both of us.  I'm sure I'll catch up soon!