Tour of the Clinic - a Day with Jacob

It's been a long time coming, but here is our tour of the clinic. Some photos were hard for Jacob to take (ie. having his port accessed). But we decided that we would have a picture record of his experience to go along with his written story that he is working on with Liz. These were all taken on December 3rd (our 10 hour day with count-dependent chemo).



Arrive at clinic at 10:03 a.m. Mom takes pictures of Jacob with all the hats and goodie bags that we brought from our friends to donate to the reward closet at the clinic. Then we make our way to the basement to the pediatric hematology/oncology offices.



Mom checks Jacob in, pays the $20 copay, and asks for numbing cream. Jacob spreads cream on the skin above his port and puts a bandaid on top. It takes about 30 minutes for the area to numb. Jacob is highly sensitive to tapes and adhesives, so we try to avoid using them. Jacob settles right into his DS game & I pull out my Twilight novel (I don't remember which one I was on).

At 10:41 Jacob is taken back to record his vitals. He weighs about 75 pounds which is down 6 from where he started back in July. They check his blood pressure and measure his height.



We bring his file & all his name labels down to the lab. They are way backed up, so they send us back to the waiting area.



Usually Jacob gets to play video games for the better part of his clinic days. We try to worry about homework before he goes or the days surrounding clinic day. We've also added some reading time, but it's hard to enforce. Jacob really likes to escape into his games and forget he's at the clinic.

At 11:54 a.m. we are brought back to access his port. This is the toughest part on him. Sometimes just the sight of this tray can make him feel sick.




A special needle is used to access the port. It looks like a glorified thumb tack. I guess I didn't really get a good angle with the pic. I was trying to hurry before she started using the stuff. The nurse wears gloves. There's like a cotton swab on a stick that the nurse rubs around Jacob's port to sanitize the area. He doesn't like the pressure. I imagine his skin kind of gets pinched between the swab and the port. Jacob has to sit up real tall and poke his chest out. The nurse feels the port and pushes the needle through his skin and into the port. They fill up the tubes with blood for his tests. Jacob often helps to fill up the tubes. He detaches them from the access and hands them to the nurse. Then the nurse "flushes" the line by pushing saline through the tube. Finally is the part that has gotten increasingly worse for Jacob - the heprin. He is REALLY grossed out by the smell. I've encouraged him to plug his nose. We've also brough hard candies for him to suck on. That seems to help some.



Now the blood is sent to the lab to get counts and we WAIT. On this day we left the clinic and drove to Denny's Diner for a brunch date. Jacob ordered lemonade and alien pancakes.



Even after our labs came back saying that Jake's counts were good enough for chemo, the doctor wasn't back from tumor board over at the hospital. They got WAY backed up with patients which meant LOADS if waiting for everyone.

At 4:32 p.m. we were finally brought back to Exam Room 6. We've spent most of our visits in this room. Jacob was bored and started to fiddle around with the equipment. He even started to drift into the hall to play with the height measurement thingy. Then he was playing video games again.



I took picture to show his new set of lashes that are about half way in. His eyebrows are growing back too. Starting from the insides and spreading across. His new hairs are quite blond and oh so soft.




Dr. Mathias checks his eyes, ears, belly, scar, etc. She observes his hands and feet and accesses the neuropathy. I know she felt very hurried on this day, but she still took sufficient time with Jacob and even paused for a photo with him.



Another thing about Room 6 - this was where we first sat down with Dr. Mathias. This is where she confirmed what Dr. Chamberlain had said - it's Rhabdomyosarcoma. She listed off the tests that we'd need, mentioned that we needed to be admitted to the hospital for a line and to start chemo. I'm sure we looked dumbfounded sitting there. We didn't even know what questions to ask. We didn't get a thorough overview of the chemo regime until we were in the hospital surrounded by a social worker, and nurse instructor. It was a Wednesday. The first of many Wednesdays that revolved around cancer.

At 4:55 p.m. Dr. Mathias wrote the orders for chemo. Jacob had gotten bored of playing DS in the waiting area, so we were allowed to come back to the Infusion Room where they have a GameCube and assortment of games.



FINALLY, at 5:39 p.m. we were brought back in for chemo. This is what the tray line up looks like. The ones with blue lids are saline for flushing the line. The green lids are the two chemos. First the Vincristine and then the bright orange potion is the Dactinomycin. There are flushes in between. Finally with the yellow cap is the heprin. Then the needle is pulled out and a cotton ball and bandaid go on top.