July 21, 2013

Sunday...and quiet.  Cody wanted to just relax today.  I ran errands and got some groceries, finally.  Thank goodness, he is still eating.  I think this upcoming week will be tougher.  His friend Nikki came over to watch a movie and he just goes from one couch to the other.  I sat with my neighbor and good friend, Sue to get her caught up.  She and her family have been a HUGE help to us each time we leave.  We are lucky to have them.
So tomorrow looks like another day of rest.  Our appointment is on Tuesday.
Keep praying...xoxox

July 20, 2013

Thank goodness we cooled the house down.  That'll teach me to not go too long without the ac on in here!
We had a good day.  Cody woke up feeling pain in his left side.  We called the dr right away and he said to take pain meds and if it gets worse to call back.  Cody was up around 9 as I know he was worried.
His uncle from PA and cousin from Charlotte came to visit today.  We picked them up at the train and had a nice lunch then they came back here.  Cody wanted to take his cousin for a ride in the mini. I know Cody was happy to see them.  It was nice of them to make the trip, long train ride from PA.  Then our good friend, Moira brought Xena back.  You really could tell she missed Cody. They both are staying close to him.  They know.  We ended up watching a movie with her and then went to get something to eat.  We just got pizza as TGIF's was too crowded.
I am attaching some pics from the past week.

July 19 , 2013

Friday- we had an ok night.  Cody was able to take a shower.  He had to wait because of the mediport stitches.  I think he took 4 showers between yesterday and today.
We got to Sloan around 9:30. He had to be accessed which means the needle into the mediport so he could start his IV for the colonoscopy.  He got called in rather quickly and did not want me or his dad to go in.  I think he is trying to be strong especially in front of his dad.   His dad left at that point.  Cody was texting me from the back but I never asked if he wanted me.  I have to give him some independence.  I am trying and it is hard.  They finished rather quickly and then I was called back as he was waking up.  We were waiting for the dr to come in that did the scope.  I saw another dr walk by.  He was Cody's gastro dr and actually did my suspicious colonoscopy maybe last year.  H was shocked to hear the news.  So they did see a tumor outside the colon,  It was definitely not a polyp.  The dr took a few biopsies and tattooed the area so it could be monitored.  She was hopeful in that chemo could and should be able to take care of it but she was not sure.  The colorectal oncologist would be looking at the pictures and also the sarcoma team.  On the way home, we had just left and was about to get on the LIE and one of the drs called. He almost sounded like we should come back but just wanted us to be sure that if any fever or pain developed we are to call right away.  It is always scary coming home.  I am trying to give Cody his space but it is hard.
It was really hot in the house, only window units and they were not doing the trick.  Finally it got cooler upstairs in my room and we watched a movie.  I think he loses steam by the end of the day. He is having some jaw pain which is from the chemo.  He just lies around. .  I am attempting to sleep upstairs and leave him be.  He will call or yell if he needs me.
My heart hurts for him.  He has missed so much and was just getting his life in order.  He is feeling depressed, I know.   The dogs make him happy as does his fish tank.  I keep the comedy movies handy and these make him laugh too.  Casey and Nicole come on Thursday.  Cody's cousin and uncle are coming tomorrow and we will see some friends.  Have to stay busy.....thanks for checking on us...xoxoxo

July 18, 2013

Thursday: we had an ok night.   It is hard to sleep with the Iv going and then getting up evey 2 hrs to make sure he urinates.
Today the routine was to see the drs and then go to the bed area of the PDH- the pediatric day hospital. The doctor today discussed the colonoscopy. If it is a polyp on the inside it can be removed.  They are hoping it is not a tumor.  There is a chanceof a bigger procedure happening tomorrow too.  He got hooked up to more fluids and anti nausea meds.  He got a shot today to increase his white blood cells to help when his counts start dipping.  He did well but definitely seems to be getting depressed and quiet.  A nurse we had from another floor came to visit him today.
He could not eat anything today for the prep and is sitting here now trying to get the prep solution down.  He is doing well.  I have been to the drug store 2 x since we got here at 3:30.  I had to get Tylenol for his headache and Gatorade code the prep.  I bought sheets and towels for here so we can just leave.  Part of the lower cost here is there is no housekeeping.  You have to do all the laundry and clean the room.  I got that done and will vacuum before we leave.
Tonight there are no iv's and he got to take a shower which was so nice for him.  We should be able to sleep better.  We have to be back at Sloan at 9:30.
Please pray for a routine procedure tomorrow....thank you.

July 17, 2013

Cody had a pretty good night. We were up and at sloan at 7:30am. First ones there and last ones to leave.
So it looks like the procedure is to meet with the drs each morning nice and early and then we discuss the plan for the day. They actually cut back one of the chemo drugs.  I think they cut back because of the spot on his colon.  I am sorry if I am repeating myself.  Chemo will leave a hole in the colon and this would cause bacteria to back out which is not good.  Surgery would needed to remove that section of the large intestine. Cody gained 8 pounds from the fluids last night. It is expected but everything scares me.  They will be doing a colonoscopy this Friday. He will do the prep tomorrow.  Not going to be easy.  I sometimes wish they would leave him alone but I know he needs help.
My brother left today.  It was great having him. I know he will return.  Cody enjoyed his visit and he was a big help.
We played some games today and Cody felt pretty good.  His dad waited for us to leave and Cody decided he wanted to go to McDonald's by himself.  I begged him to not go and to let me or his dad go with him but he said he needed some time alone.  It is so hard.  He did it, of course and was fine but could not get into bed quick enough. He is trying to be so strong and to not change anything.  He is hooked up to a Iv bag of fluids in a backpack.  I know he is getting weaker and I don't want him to be alone in case something were to happen. It' s so hard.
I hope he gets that we need to stay here at Ronald house for each week of treatment.  It would be too much to drive back and forth after these long days here.  We get done at like 6 and have to be here at 7:30.  The other days we can do it,  We might even be able to get bloodowork done from home. He asked if he could stay here alone when I go back to work.  We all know the answer to that.
So with that, pray for a good night of sleep for both of us...and prayers for healing..

July 15 and 16

Monday: got to Sloan nice and early. My brother, Roy came in last night.  Cody got all situated and we got him comfortable so he could do the MRI. It went much smoother. Thank goodness. Then we had to wait until the mediport procedure. Because he is technically an adult, we were able to go to the rec room on the 15 th floor. It passed the time. He had fun playing foosball with his uncle. Finally at 3:30 we were called down to surgery only to wait there much longer. He went in at 6:50. I guess Roy and I saw him around 8:15. He did well. He woke up and we were in a taco place up the block by 9 pm. He ate 4 tacos and felt great. Just a little sore.
He crashed immediately when we got to the room.
Tuesday: we got to Sloan at 7:30. We met Dr. Meyers, another dr on the sarcoma team. He told us that the MRI did not really give them much more info. I did speak to Dr. Kernan, his transplant dr, she came to visit. She says there is something there in the large intestine. They need it know if it is inside pushing out. One concern is that chemo will leave a hold there which could cause bad infection  from bacteria in the bowel and it leaks because of the hole created from the chemo. If it does make a hole, he will need to have that part of the intestine removed.
He had the chemo and did well. No nausea. He ate a good lunch and dinner. He slept a good part of the morning.
We have so much support here. We know so many. I do my best to stay together when I am with him. But the second, I walk away, I lose it. We saw a family here we knew. She was speechless. It's so hard. Cody keeps me smiling so I stay with him.
Thank you for checking in with us.
Thank you for all the texts, emails and phone calls. It all helps
Casey and Nicole come on the 25th. My dad is going to come for the next round of treatment. He wants to be here when he can help.
Again thank you.

Sunday, July 14, 2013

So we were off nice and early today.  Got to Sloan in no time and then the troubles began.   It was hard to get an IV in.  He needed it so he could get pain meds, morphine for the MRI.  It is painful for him to lie flat.  So after about 8 tries in each arm, we got a vein.  So the morphine is going in and his arm starts tingling, getting red, and then the hives come.  Now the morphine is already in.  So quickly we give him Benadryl and pull the IV out.  Now we lost out MRI appt.  He asks for something for anxiety so they give him his ativan.  So we wait until they can get us in and we give him Dilaudid, another pain med.  It makes him very loopy and he starts being rather silly.  So he finally goes into MRI and he is still too uncomfortable.  So the dr and nurse come down and he gets another dose.  He is resting and taking a snooze and they get the MRI or whatever scans they can.  He comes out and is so groggy.  We get food and walk to the block to see his cousins for 30 minutes.  Then as soon as we get in the car, he passes out.  He sleeps all the way home and then goes right to the couch.  We left his IV in his hand.  We get home and there is blood in the line.  I make the call and run to PM Pediatrics to get flushes because the ones here are all expired.  Fun.  We go to meet Roy at the train and had dinner.  He is watching a movie with his friend.
I am worried about what the scan will reveal.  I have so many questions.  I will keep praying...
Tomorrow we will leave here at 7 and get another MRI of the pelvis and femur bone.  Today was of the colon.  And then he will get the mediport for the chemo.  Again, I pray....