There is no protocol. . .

One day at home went by way too fast.  But Brendan enjoyed every minute of it.  This morning he received a letter that had been mailed to Primary Children's then re-sent to our home while Brendan was back in the hospital.  It caught up with him this morning and watching him smile while he read the letter warmed my heart.

 After packing up the car this morning, it was time to head back to Salt Lake.

 We received a call this morning saying that Brendan's blood counts were low Sunday, so they had to be re-tested to see if he could receive his chemo treatment today.  After thinking we didn't have to go to clinic, we did.

 But they only had to draw blood -- and his port was already accessed.

 Every kid on the oncology floor gets a handmade stocking this week.

 Brendan's stocking had a Mr. Potato Head and lots of other fun items.

 From clinic to radiation at Huntsman.

 One of the gifts in the stocking was a card game.  We played it while waiting for radiation.

 For each patient doing radiation, the radiation therapists prepare a music playlist for them to listen to while they are having their therapy. Lately, Brendan's playlist has had a Disney movie theme.  Today everyone sang along to Aladdin's "magic carpet ride" while they set up.

 After radiation we headed back to clinic to find out about Brendan's blood counts.  As we walked in the door they said, "You're good.  Time to check in."  So we did.

 Immediately we were sent down to audiology for a hearing test.  They couldn't start chemo without it.   (A side effect of Cisplatin can be hearing loss, so they will test his hearing after every chemo round to keep an eye on it. Brendan had a baseline audiogram before he started chemo last month.)  

 They tested inner and middle ear responses.

 They put him in the soundproof booth and had him listen to beeps in his ears as well as repeat words they told him to say.

Brendan's left ear hearing is still perfectly normal.  His right ear has a slight loss of the upper hearing tones.  Brendan had complained after the first round of chemo that his ears were ringing.  So they will watch carefully to see if there is any further hearing loss.  Right now he doesn't notice the loss as his other ear is hearing those tones.  If they sense further problems, oncology may consider lowering the doses of Cisplatin he is getting.

 Lindsay, here is one of the hat collections in oncology where people donate hats and the kids can pick a hat if they need one.  I will get you a picture of the hat tree in the clinic soon.

 Tonight Brendan ordered pancakes and carrot sticks for dinner.  "Nasty!" he said after trying a bite.  "Nothing tastes good anymore."

After the hearing test, the oncologists decided to give Brendan lots of fluids tonight in order to get him really hydrated and then give him his chemo tomorrow (Tuesday).  They are hoping it helps with the nausea this time.  So the plan now is to hydrate overnight, go to radiation (changed to 7:30 a.m.) start the pre-chemo fluids with magnesium around 8:30 a.m. (running for 6 hours) and give him the Cisplatin around 2 p.m.  (running another 6 hours),  then give him another 24 hours of fluids after that with lots and lots of anti-nausea medication.  They plan to start with lots of medication on board this time and wean him off of it rather than start small and try to keep ahead of it (like last time -- didn't work.)  Brendan said he wouldn't mind just sleeping through it this time.  He said it's better than being awake and throwing up.  

As we talked about what to expect, the doctor kept reminding me that there is no protocol for this type of cancer.  They have no firm plans and everything changes based on what they are learning and seeing as we go along.  Nothing is "as usual" about this treatment.  They are borrowing protocols from other types of cancers with similar properties.

Brendan went to sleep early tonight.  He was pretty tired. But he enjoyed the evening knowing he was still going to feel good in the morning.  Sleep well!