Round two of Chemo? CHECK!

Sam’s round two of chemotherapy has been completed!  HOORAY!  Just six more to go!  On November third, Sam began the first of his three week treatment for Round 2 by making his way to Riley for a series of tests, blood work, fluids, and the administration of his chemo.  This is standard procedure and happens the first day of each round.

It’s early!  And we’re up and ready to roll down to Riley!

(DISCLAIMER:  Please note that Sam and both of our children for that matter, do own other clothes besides Colts jerseys and sweatpants!  After looking through the blog, I notice that that is all they seem to wear!   But hey…when you’re 9-0…)

A quick good-bye hug for big brother Jack before we go.  The boys won’t see each other until late afternoon the next day since day one of each round requires Sam to spend the night in the hospital.  And with the flu outbreak, no visitors allowed at the hospital except parents.

But before we make the trip, something VERY important needs to be applied to Sam’s chest…NUMBING CREAM!  Once we get down to the hospital, Sam’s port will be accessed for his blood work and to give him his chemo.  During a short surgical procedure this summer, Sam had his port placed so that he wouldn’t have to be poked with needles over and over again during the course of his treatment.  The numbing cream is applied about 25 minutes before he is to be accessed and a piece of sticky plastic wrap is put over it to hold it in place until we get to the hospital.  As for the inventor of the port and especially the numbing cream…LOVE YA!  Wanna give you a big fat kiss on the lips for one of the greatest inventions ever.  You would definitely be on the Christmas card list if I knew who you were.

(This photo as well as a few others were actually taken this summer right before round one when Sam was sporting his fashionable mohawk. )  See his little scar there?

Once at Riley, Sam is checked in and goes through the same things each and every time he makes a visit to the clinic.  First, they take his temperature.  He cannot receive his chemo if he is running a fever.

Then they check his blood pressure.  This is especially important these days since his two seizures last month.  Still a little high, so they increased his blood pressure medication a bit.

Then it’s off to the scale for the weigh in!  For most people, this is a dreaded part of a visit to the doctor.  But in this situation, we celebrate weight gain.  And Sam actually gained some weight this week!  Hooray!

And then finally, Sam’s height is checked.

Next, we are lead back to the exam room where Sam waits for his port to be accessed.  This is usually the time when Sam does this…

While Daddy does this…

Finally Nurse Sally (we love Nurse Sally!) comes in and it’s time to access his port.  The sticky plastic wrap is removed and she cleans the site.

Next, a needle is inserted into his port.  During the early days of accessing his port, a major pep talk was usually in order to calm his fears along with the use of his Nintendo DS as a distraction.  Even though the numbing cream was doing its job, mentally it was a bit scary having someone stick a needle into you chest.  I’m sure many of you would agree!  I’m happy to report that, these days, Sam is just fine having his port accessed.  He still, however, uses his DS as a distraction…sometimes even when he’s NOT having blood work or chemo!

Once accessed, Nurse Sally begins taking blood for Sam’s lab work.  His port will remain accessed for about the next five days-two days in the hospital while he receives chemo and fluids and then three days at home while he receives more fluids to flush out his system after his treatment.

With Sam’s blood work off to the lab, we head downstairs for a GFR test to test Sam’s kidney function.  Some of these chemo drugs can be quite harsh on the kidneys.

Then it’s off to a hearing test.  Again, one of the drugs Sam takes while in the hospital for Round 2 can be quite harsh and cause some hearing loss.  Before each round begins, his hearing is checked and we are happy to report that Sam’s hearing is great-well inside the normal range.

For this particular visit, Sam also had an eye appointment to check his vision.  You may recall that after his seizures, Sam had some vision problems.  First, not being able to see at all, then things just looked fuzzy and dark to him, as well as blurry.  During our stay in the hospital after the seizures, his vision was checked and Sam had a terrible time trying to read charts on the wall and especially had a difficult time with the test to measure color blindness.  In fact, he failed the test-getting every single one of them wrong.  On this day, we are happy to report that Sam past the vision test with flying colors.  Believe it or not, they say he has 20/20 vision and this time got every single color blindness card test correct!  Woo-Hoo!  And before some of you jump on “Google” to search “orange-ish cast around eyes during chemotherapy” let me save you the search!  Sam had a dye put into his eyes to test for  ”dry eye” and after the test was over, said he wanted to keep the dye on.  We don’t ask.  If it makes him happy and doesn’t harm others or himself-it’s fine with us.  :)  The only problem was I think this dye is supposed to come off immediately, because it was VERY hard to get off later.  In fact, it stayed on for days!

After all of these tests, it’s back to the clinic to begin receiving fluids while waiting for a bed to open up on the fifth floor, the Hematology/Oncology floor.  Sam needs to be well hydrated before he can begin his chemo.  And unfortunately, the fifth floor at Riley is way too busy to get right in a hospital room.  So, fluids begin in clinic.  And so there is more of this…

And some more of this…

Even though we began our day with an 8:30am appointment, we will not get up into our hospital room until 6:45pm.  A lot of waiting happens on the first day of each new round.  Lots of books are read, coloring pages completed, fingers become sore from playing the DS, and sometimes someone likes to play “doctor.”

Finally up in our room and well hydrated, Sam finally begins his chemo about 10:15pm.  He is given a drip through an IV bag of two drugs and a third one he takes orally.  Before it begins, he takes a medication that helps his tummy since this chemo cocktail can cause severe nausea.  The drip lasts about six hours.  After his medication is completed, more fluids are given though his IV to continue to flush his system.  One parent is allowed to stay in the hospital room with Sam over night.  And this parent does not get very much sleep with all of the fluids that Sam is given.  Frequent bathroom visits come with the territory.

The next day, Sam waits to go home.  He is anxious to get out of the hospital and see his brother.  He must ask us 212 times, “Is it time to go yet?”  While he waits, he is visited by a member of the Cheer Guild at Riley (a group that plans activities for children to do while in the hospital-they are WONDERFUL) and is brought a little goodie…a paint your own piggy bank!  This keeps him occupied for a little while before he asks again, “Can we go home now?”  (Please note orange-ish dye.  Ugh!)

Finally, about 2:30pm, we are officially discharged!  A box of fluids is waiting for us at home and each night for the next three days we will play “doctor” again and hook Sam up to these fluids to continue to flush his system.  The first and second night at home are a little rough as Sam has severe nausea and stomach cramping.  We sit with him on the couch or lay in bed with him, holding his hand, stroking his little head and trying to make him comfortable.  It’s a terrible thing for someone to go through, especially a seven year old.  Saturday when his three day bout with fluids is complete, “Dr. Dad” removes his needle and Sam is free from his accessed port!  This makes him VERY happy!  Sam visited the Oncology clinic two more times during the next two weeks after his night in the hospital to receive more chemo, but these were outpatient procedures.  But once again, port had to be accessed, blood had to be drawn…

But he is finished now!  Finished with Round Two!  And he is now officially finished with steroids!  HOORAY!!!  Finally!  We are so happy about this and are happy to report there have been no major issues with weening him off the drug.  Sam has also made his way back to school!  He is not going full time, just a couple hours a day, but loving every minute he is there.  We hope he is able to attend more school during this three week break period.

So, Round Two…CHECK!  Done.  Sam will not go back to clinic or be in the hospital again until he begins Round Three, December 15th.  On this day, he will have all of his usual tests, but will also have a MRI to make sure that everything looks “A-Okay” at the site of where the tumor was located.  Please continue to pray for Sam and that his scan comes back clean that day and everyday!  Go Sam!  Go!

As always, thank you for you continued love and support of Sam and our family.  We feel your love daily with emails, posts to this blog, phone calls and notes.  We are so happy that God has put you into our lives.

Until next time!

Erica