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!