Sam's Blog » Blog

DAY SEVEN

Day Seven of Sam’s Round 8 chemo cycle was just like any other day seven of previous rounds…pretty uneventful!  After staying the night in the hospital for the beginning of round 8, we made our way back on day seven for Sam’s second dose of chemo for this round.  This dose, a dose of Vincristine, is given on the third floor in Riley’s Out Patient Center, otherwise known as the ROC.  When we visit the Oncology clinic, it’s the same routine…weigh-in, get’s Sam’s height, take his blood pressure and temperature and then escorted back to one of the exam rooms for bloodwork.  We also visit with Dr. Pradhan or nurse Jayne during this time.  When the results of the bloodwork were returned, Sam’s numbers had dropped a bit.  His ANC level (infection fighting ability) had drop some,  but his platelets and blood count were low.  Over the course of his treatment, platelets had never been an issue, but after eight rounds of chemo and constantly being hit with heavy drugs, his bone marrow is feeling the effects.  It was decided that Sam would receive yet another blood transfusion and we would wait and recheck his bloodwork again in a few days to see if he needed platelets as well.  Daddy and Sam enjoyed three hours in the infusion room while Jack was at camp and I was visiting my sister and her family in Oregon for my nephew’s baptism.

DAY FOURTEEN-SAM’S LAST DOSE OF CHEMO….FOREVER!!!!

The smile on all of our faces this day COULD NOT be contained!  This was going to be Sam’s last dose of chemo, not only for round 8, but in his protocol.  He is finished with chemo.  I’ve waited forever to say those words.

This called for some celebrating!  First up, a little car paint!  Sam has been such a trooper and has shown such courage for the past 14 months-enduring brain surgery, radiation, 48 weeks of chemo, seizures, blood transfusions, scans, needle pokes-you name it!  I wanted everyone to know that this was his last round and wanted him to be recognized!  He loved the idea and even helped decorate the car.  He added a few happy faces and then just one word…DONE.  I think that said it all.

All the way downtown to Riley, we jammed to Sam’s ipod and waved with a smile to all of the honkers we passed.  I had to suck on my two front teeth from time to time to keep the tears from falling.  This was it.  Our last time headed to Riley for chemo.  Down at clinic, nurse Sally kept saying, “Hey Sam!  Do you know this is your LAST chemo??”  We were all smiling.  Yes.  We did know.  And you could see the joy on all of our faces!

Sam with Dr. Pradhan (we LOVE him!) and nurse Sally.  (We LOVE her too!)

Sam’s counts were down this round so we were asked to return the following week for more bloodwork.  That’s okay.  We are used to that!  After clinic we continued the celebration with a little lunch at one of Sam’s favorite restaurants-Charleston’s!  He loves their Mac N Cheese and their warm croissants. It was such a wonderful day filled with happiness and a sense of accomplishment.

I can do all things through Christ who strengthens me.  Phillipians 4:13

After each round of big chemo, Sam comes home from the hospital with fluids.  For five nights, he is hooked up to an IV bag and his system is flushed and hydrated with a 10 hour drip.  This process flushes out his kidneys, hopefully reducing the amount of damage to them from the heavy doses of chemo drugs he received during “Big Chemo.”  (That’s what we call our first day of each round when we stay overnight in the hospital and Sam receives a chemo cocktail of three drugs.)  When Sam comes home from the hospital, his port needle and line have already been accessed.  All we need to do is hook him up to his IV at night before he goes to bed.  Setting up the pump, priming the pump, flushing his line and giving him a dose of heparin are all tasks done by Dr. Daddy.  For some reason, I have been dismissed from this job, unless of course, Daddy is out of town and I am the only option.  Only Dr. Daddy is allowed to do fluids.  I have been kicked to the curb.  :)

Picture of some of Sam’s fluid supplies.  Looks like he only had two days left in this picture!  Did I mention that he strongly dislikes receiving fluids?  Receiving fluids means having to have his port accessed, and we all know what a big fan he is of having his port needle in his chest!  It also means using the restroom a lot!   But we keep telling him, ” this is your LAST one! “

“It’s not how much you do, but how much love you put into what you are doing.”

-Mother Teresa

Upon arriving home, it was instantly obvious that our dog Champ had gotten worse over the past 24 hours while I was away in the hospital with Sam.  His foot that held his cancerous tumor had begun to ooze and bleed even more, he was licking it constantly, his leg and foot were now swollen, and he was favoring his bad leg.  Jere and I made the tough decision that it was indeed time.  We sat the boys down and had a gentle talk with them about Champ.  Many tears were shed by all.  He was so gentle with our boys when they were babies and they would constantly sit on him, pull on him, get right up in his face and use him as a step stool and he never seemed to mind a bit.   It is hard to say good-bye.

Champ was spoiled Wednesday night with lots of love, hugs and attention.  Jere cooked him a nice, juicy steak on the grill and Sam fed him an entire 1/2 pound of turkey from the deli.  (Oops!  A couple pieces of turkey as a treat quickly turned into the entire bag!)  What a feast!

Thursday morning, after a little walk out in front of our house, (his foot was far too swollen and he was too uncomfortable for anything more) it was time to say good-bye.  Jere loaded him up in the car and then they were gone.  Such a sad, sad day.

Good-bye Champ.   Thank you for all the years of unconditional love.  You have been a member of our family for 12 1/2 years and you will be greatly missed.

After receiving six hours worth of chemo Tuesday night, Sam awoke Wednesday with some nausea.  He knew, however, that today would be the day he would get to go home and that made him feel a little better.  :)  Jere gathered some of our items and headed out for the car…

Meanwhile, nurse Renee began prepping Sam for his trip home.  After disconnecting Sam from his IV fluids, she cleaned his port site and covered it with a new bandage.  Sam was not a fan!  He will go home with his port needle since he will be receiving fluids for the next five days at home to continue to flush his kidneys from the chemo drugs.  He has severe “port anxiety” and hates when anyone touches it and guards it with his life!  He is so frightened that it will get pulled out or dislodged somehow and he is very protective of it.  (I think I may have failed to mention that this did indeed happen one time, so a little anxiety about it may be appropriate!)   It is not uncommon for him to try to wear the same shirt he is wearing when his port line is placed for the entire time he is accessed.  He wants no one near it.

He said the solution they use to clean the site was stinging him.  :(

Before we leave, we take one more stroll around the fifth floor, looking for Sam’s friend Jalyne.  Jalyne is Sam’s age and was diagnosed a month after Sam with the same type of cancer.  As we walk about scanning the rooms, it is hard not to become emotional at what I see.  Each room filled with children- some babies and toddlers in cribs, some Sam’s age and some in their teenage years-all with cancer and fighting this disease.  Most have lost all of their hair and they look so frail laying in their hospital beds.  The constant sound of IV’s beeping cannot be ignored.  I hear one nurse from one of the rooms remind a child to try not to touch his epidural.  A child in so much pain that he has to have an epidural???  Others are getting sick, others are trying to sleep and others cry out in pain or because they are scared.  These children should not be here.  They should be out enjoying the summertime sunshine, laughing, playing, swimming with their peers.  Instead, they are here trying to get well.  This has been our reality.

Finally we find Jalyne’s room and snap a couple of pictures of the two of them together.  They are so cute!

Can’t leave the fifth floor without a mask!

Sam realizes that this is his last chemo overnight in the hospital and is happy to tell everyone about it.  It has been a long eight rounds and it is hard to believe he is almost finished.  Two more chemo doses to go and he will be done!

Hugs,

Erica

On Tuesday, we were up bright and early for our trip downtown to Riley.  After a bath and putting a few finishing touches on packing his backpack full of things he wanted to bring with him to the hospital, Sam was ready to go.  I always love to see what he has decided to bring with him.  Usually it consists of his Nintendo DS, a few games, his favorite stuffed animal to sleep with, Hedgy, and then a few random things from his closet that he hasn’t played with for awhile.  Sam and I quickly hopped in the car, raised the garage door and headed down the driveway and were greeted with this:  Four colorful balloons tied to our mailbox in honor of the beginning of Sam’s last treatment.  A gift from “Aunt” Lee, “Uncle” Jim, Drew & Demi.  He had a smile from ear to ear!  Thank you guys for thinking of him!

Sam in the car on the way to Riley.

Once we arrived at Riley, Sam had his port accessed at 8am, blood drawn for labs to check his numbers, and then it was time for him to begin the testing he has at the beginning of every round.  First up, his kidney test.  Cisplatin, one of the heavy drugs Sam takes during his chemotherapy, has some nasty side effects, including kidney toxicity.  During this test, doctors inject a medicine into his port, lay him on an x-ray table and take pictures of his kidneys.  This test usually takes about 20 minutes.

Sam on the x-ray table during his kidney test.

After Sam’s kidney test, it’s up to the second floor to Audiology for his hearing test.  Again, Cisplatin can effect the hearing, so it is checked with each round.  During Sam’s round 4 of chemo, it was noted that he did in fact have some hearing loss, and therefore his Cisplatin was dialed back by 50%.  But after Tuesday’s 30 minute test, it was determined that there has been no change in Sam’s hearing from his last round.  Hooray!  :)

It was then time to head back to the third floor over in the Riley Out Patient Center, a place where we have spent so much time over the past 14 months.  As we waited in the waiting room to be called back for the results of Sam’s blood work and to begin his pre-chemo hydration, we were able to visit with other cancer parents.  Looking around, you can quickly tell that this is not your average “pediatrician’s” office.  Children of all ages and races sit about the room-many with no hair, some wearing masks.  Some have been on this journey just as long as we have, while others are new to the club.  These families have had their lives turned upside down by this terrible disease and are doing everything the can to help their child survive.

Sam’s numbers looked great for the beginning of round 8!  Sam’s ANC number was actually up to 1275…a SUPER number for him.  Everyone in the halls of the clinic congratulated Sam on beginning his last round and nurse Sally even began singing Kool and the Gang’s “Celebration!”  (I’m not so sure Sam was recognizing this song at first!  It’s an oldie but goodie I kept telling him!)  Everyone was also commenting on how much HAIR Sam has gotten since they had seen him last.  It is getting thick and he is loving it!

Finally, around 4pm, nurse Sally takes us up to the fifth floor.  A bed is ready for Sam and it is time to get him checked in up on the Cancer Unit.  Usually, Daddy gets the pleasure of staying overnight with Sam during his big chemos.  This is their special little time together as crazy as that may sound.

Daddy on the hospital phone ordering Sam something to eat from the Riley kitchen.  He says the food is just “okay!”

But this time, someone else got the honor of staying with Sam for his big chemo…ME!

Believe me, I have spent my fair share spending the night at Riley, but never for big chemo!  We played on the computer, watched quite a bit of Cartoon Network and did lots and lots of cuddling.  One of us also had to use the restroom A LOT due to all of the fluids he was receiving.  (Can we say about every 30-40 minutes including during nite-nite hours??  I felt like I had a newborn again! )

Before big chemo began, Sam received a beautiful balloon bouquet from Aunt Jessie and Uncle Matt…Eight shiny happy face balloons-one for each round.  It really made his day and filled the room with some happiness.

Finally, it was time to begin Sam’s big chemo.  The nurse arrived and gave Sam two different kinds of anti-nausea medicines-Zofran and Emend, to try to stay ahead of the nausea.  She then began his first IV bag of chemo, Vincristine, which takes about 15 minutes to administer.  He receives this chemo down in clinic too, where they just push it through his port line, but up on the fifth floor, they are required to give it through IV.  After Sam’s Vincristine, he is then given three oral chemo pills-CCNU.  I am so glad I was there and not down at McDonalds getting a McFlurry for someone like I had been moments earlier, when they gave him his CCNU.  The day nurse forgot to log it into the computer that she had given him this medication and when the night nurse came on board, she tried to give him this chemo again.  Not good!  Parents, it is always such a good idea to look and read everything they try to give your child.  They are human too and mistakes can happen.  I’m just so grateful that I was there to double check everything.  A lot of times, if the order is written, nurses will just administer a child’s meds regardless if the parent is on a McFlurry run or not!

Next up was Sam’s Cisplatin.  This IV drug is run over a six hour period.  When I see them hang this bag and cover it with an amber colored opaque plastic bag,(to protect the drug from light and to also easily identify it as chemo and not just clear IV fluids) I have a love/hate feeling that runs through me.  I love that this drug has been created to help treat and fight the disease that could rob my child of his life.  But I hate the thought that as it destroys any lingering bad cells, it is also destroying the good cells as it can’t distinguish between the two, as well as makes him feel nauseous and wreaks havoc on his little eight year old body.  Lots of prayers are said, especially during this time, as I ask God to heal Sam and ask that this truly be the last time he will have to receive this drug.  Even at round eight, it can be emotional.

Day Zero.  That is what they call the first day of a new round.  Each round is 42 days long, with the first day being counted as day zero, the day the chemo begins.  We are beginning the end of Sam’s chemo journey.  It is both a wonderful feeling and a scary feeling all at the same time.  Thoughts of moving forward, healing and getting on with his eight year old life is so exciting.  Fear of being off chemo and the possible return of Sam’s tumor is petrifying.  But as Jere says, “We win each day and let’s focus on today and not worry about tomorrow or what COULD happen.”  Your mind is so powerful and if you are not careful and keep it in check, it can get the best, or in the case, the worst of you.  So positive thoughts for Sam and lots and lots of prayers!  Sam is so lucky to have such a strong, powerful group of prayer warriors!  Thank you so much for every single prayer.  We are truly blessed.

Lord, you know all my deepest desires and fears.  I turn to you today, trusting that you will hear my prayer and answer me.

Stay tuned for “Day One” update coming soon!

Hugs,

Erica