Friday, October 10, 2014

I Finally Understand "Cancer Sucks" - Chemotherapy Recap, part 1

Hi Friends! We have one more week of chemo! I thought I'd recap the first month of her treatment. 

Chemo week #1

Her first treatment was at St. Jude in Memphis. I would say the biggest challenge after this treatment was the struggle to remove her bandage so we could clean her port/incision area. She fought, yelled, and cried to the point of, too. We would try to remove it while she slept at night and she would slap our hand, fuss, or curl up into an unbreakable ball. We finally gave up. I was so frustrated because we were told to clean that area a couple of times a day, so as a mom, I just wanted to clean that area. One of my brother's nurses offered to help. She was able to work her "nurse-magic" to remove the bandage and clean the area. Unfortunately, Lily had completely exhausted herself from fighting and anxiety to the point of being nauseated - bad score for mom :(

Sunday we attended mass. Bishop Munch was presiding for the installation of our new priest. After mass, we introduced Lily to the  Bishop and asked for his blessing. He prayed over her asking for complete healing. It was very touching.

Besides the bandage ordeal and tiredness, she felt fine on Monday so we sent her to school. Her class was so excited to have her back! I talked to them about safety around her port area, how she would receive her medication, how she may feel, and how she may soon lose her hair. Kindergartners have very interesting questions, to say the least. LOL! 
I cannot express our gratitude enough to Lily's teacher, Mrs. Melissa, for her constant care and concern. Along with her classmates and teachers, so many of the faculty and staff at school have shown such love and support -- we are so blessed to be a part of this wonderful community!

Chemo week #2  - Back in BR

This was her first treatment back home at the Baton Rouge St. Jude Affiliate Clinic and the first time having her port accessed. Child Life Specialist, Mrs. Morgan, used her special doll, Sam, to show Lily how the nurses would access her port. As in Memphis, it was a complete hands-on tool for Lily to play with all of the materials similar to the ones they would use on her. Their #1 rule: be still.

Due to the direct line to her heart, there is a certain process the nurses must take to access the port. They wear very sterile "Cinderella" gloves to scrub clean the access area. Once cleaned, they ask the child to sit very still and count to three to stick the "butterfly needle" directly into the port. Lily doesn't like to count, she just says stick it. Once it's accessed, they pad the needle with special gauze and bandages, or giving the butterfly its pillow and blanket, so it does not move and stays protected. The line is then flushed and then pulled for blood return to insure the flow is good. She did great and they all called her a little Rock Star.

Every visit, blood work is drawn and counted. For the type of medications she received during this visit, we had to wait on her blood counts to make sure it was ok for chemo. She occupied her time by eating (snacks, mac-n-cheese, sushi), watching the Fox and the Hound 2, coloring, playing card games, etc. Blood counts came back great and she received her treatment as scheduled. Like after her first treatment, she became very tired and slept the rest of the evening.

We also received the schedule for her post-treatment visit back at St. Jude in Memphis -- which will be the last week of October (Halloween week). The nurses said this is the such a fun time at St. Jude because they really go all out with decorations and festivities! One the flip side, however, due to the upcoming days we would need to take off from work for her chemo treatments and week back at Memphis, we decided it was best to cancel our Disney vacation we had booked earlier this year for Thanksgiving week :( One day soon, Disney °o°

Chemo week #3 - I hate you, steroids. 

This week is when the "Cancer Sucks" motto clicked for me.

As part of her treatment plan, Lily must take additional medications at home - one being a steroidPhysically, she had been doing great but with two weeks of steroids in her system, her mood was drastically affected.

This is basically how I feel about steroids and how it has affected my daughter --

When we try to get Lily to take her medicine or a bath or eat or dress or anything.
Steroids + Frustration = Zits
Steroids may be a great drug needed for her treatment, but the side effects are horrible. It's like she's not even my little girl these days. Take your typical five year old struggles and tantrums, then multiply them by ten, and that's what we've been dealing with over these last few weeks. Sometimes she can be very aggressive, feisty, sassy, and downright mean. Every now and then my real baby peeks out with hugs, kisses, and snuggles.

Communicating is now yelling and grunting at us or covering her ears when she doesn't want to hear anything we have to say. She constantly screams at us "I KNOW!" or "NO!" or my favorites:
Yes, Lily does have a whole bag of "sh!" with our names on it
and when I find that bag, I'm going to burn it!

She's also extremely difficult to wake up. She likes her sleep and has always been a little tough to get out of bed, but now it takes us up to an hour just to get her out of bed, then the fight continues to get her to eat breakfast, get dressed, etc. ...oh, the frustration!

I hate that she has to go through this and I know she doesn't realize how challenging it is for us. I tell Roger this is a preview of her upcoming teenage years. LOL! I do appreciate comforting thoughts like "poor baby/darling...she can't help it...glad she's feels ok's only short-term..."-- but keeping that in mind is sometimes impossible when the bus is around the corner or it's way past bed time or we're late for work every day. Her mood swings does not help someone like myself who has very little patience to begin with and I feel like all I do is scream and fuss right back. However, I'm slowly learning to just walk away and let my husband, who has the patience of Job, deal with her when I no longer can...but even he is starting to wear down. I hate you, steroids - I want my sweet girl back.

Spoonful of Sugar...or something similar.

Another constant battle with Lily has been to get her to take her medication. On certain days, there is the possibility she could take up to seven medications depending on how she feels. For the most part, however, she rotates a combination of at least three at one time: Zantax (to protect tummy), Prednisolone (steroid), and Septra (antibotic). Getting her to take them has been a trial/error process.

We've tried bribery (i.e. Tutti Fruitti, money, smiley faces, stickers), putting it in chocolate milk and juices, and "calling" St. Jude to talk to the doctors. Even Dr. Moore and the nurses have talked to her on the importance of taking her medicine. It has been extremely frustrating and has taken almost these entire six weeks to finally manage this struggle. After the first month, a friend offered samples of a hydration drink with electrolytes, vitamins, and other good stuff from Melaleuca. We added her medication in that drink and she has been taking it much better ever since! We also threw in our own version of a spoonful of sugar by giving her a Tootsie Roll or Pez before and after she takes her medication. We are finally managing this with her much better now - thank God!

As far as her actual chemo day, everything was smooth sailing.

Rounding off the week

Finally, to top off that week, Luke had injured his arm in the third play of his football game. X-rays showed he had a buckle fracture and will be in a short arm cast for 6 weeks. His cast will come off right around the time Lily completes her chemo. Luke is not an affectionate child but he did let Lily be the first to sign his cast. We all signed it but underneath the cast so his friends could sign on the top. LOL! My poor babies...our "Chemo and Cast Countdown" has commenced!

Luckily, we've been blessed that Brendon is enjoying a safe and fun Senior year! (Hurry, please find some wood and knock!)

1st Day of School
Celebrating the BIG 18!
Ready or not, it's Senior Year!

Chemo week #4 - Facing Fears.

Lily started feeling bad that Monday after school. She didn't want to eat supper and started complaining that her legs hurt (which leg pain is one of the side effects from last week's treatment). Through the night and into the next day, the pain continued in her legs as well as her arms and tummy. She slept off/on throughout the day. She would wake up whimpering about her leg or stomach hurting, then fall back asleep. I gave her nausea and pain medication as directed but she still didn't want to eat or drink. It was all heart-wrenching.

I had kept her home from school the rest of the week as Roger and I alternated days to stay home with her. Roger was better at getting her to eat a little more than I was able to do. I believe the entire week she ate 1/2 PB&J sandwich, a few bites of a banana, few bites of egg, a little cereal and drank a little of a smoothie and chocolate milk. We were worried and contacted the on-call doctor at St. Jude in BR Wednesday night to see if we should bring her to the ER. He advised us on medication and how that would help throughout the night. The next day was chemo day and we would be able to follow up with Dr. Moore.

I Get the "Bad Mom" Award

On chemo days, she starts with getting her vitals taken, then we meet with the doctor for a physical exam and discuss how she's feeling, medication updates, and any other consultation needed - then chemo. Lily had lost 5 lbs. that week and for an already skinny minnie, that was a lot. We explained our tough week to Dr. Moore and during our conversation, we realized that we weren't giving her Zantax to help protect her tummy. I cannot explain how terrible I felt knowing that my oversight contributed to her pain. With her little lips being so dry and chapped, and her saliva stringy (signs of dehydration), she received a bag of fluids with her chemo. I felt like the worst mom ever.

Lily has 10,000 stuff animals and has brought a different 'friend' to love and hug at each appointments. So as the bad mom week continues, we realize that I left her snuggie in the van at this appointment. But before I could get up to go back to the van, Mrs. Morgan, our awesome Child Life Specialist, was able to produce a large stuffed bear for Lily to love. The CLS are such a blessing for these kids!

From Iron Man to Tinkerbell

This week, she also began loosing her hair. I had noticed some strains were falling out at mass that Sunday. By mid-week, it was clunks. We would sit in bed and I'd just brush and gather the hair. We'd laugh about how thick the stack was getting as I brushed. By Friday, her hair was so knotted that I could not even brush it so I asked my aunt to cut it to a super short Pixie-cut. It was precious! 

Besides her mood swings, she's had a good disposition towards the hair loss. Most likely this is because she's too young to let self-image play it's role for the hair loss to really bother her, or maybe she's just that comfortable with herself. I hope the latter. Regardless, it was good to watch her giggle about all the hair (or as Luke called it, a huge cat hairball)...but I was also sad for her as I realized the cancer/chemo was really real.

So with a fresh Tinkerbell haircut and on track with Zantax, she was slowly getting a little energy back, enough to go to a cousin's birthday party that evening. I was so happy to see her playing and laughing with the other kids, even if it was just for a bit. She also ate a bite or two of pizza and some ice cream (of course!)...but it still wasn't enough.

It was scary to see how frail she looked in just a few days. Never having dealt with cancer or chemo before, I didn't know if this was how the rest of her treatment weeks would be like and I became very fearful, almost panicky. This was such an emotionally draining week. I had slept with her every night, so by Friday, I had all I could handle. I couldn't sleep. I just cried, stroked her head, and chanted in prayer "please let her eat."

God Hears

Saturday morning, she woke with her cute little smile and asked for just a little breakfast and some drink. She did ok taking her medicine, played a little, and even wanted to go cheer. I knew my prayers were going to be answered.

Along with school, the kids' football organization has been incredible with our family this season. Although we were late for the game, the cheer team was excited to see Lily. She wasn't able to cheer the entire game but some was better than none.

My cousin was able to get her to eat a popsicle since her lips were still so chapped. She asked for a second - sure! Then she wanted a nacho chip from her cousin - yes indeed! Then, she wanted her own nachos - yes ma'am. Anything else?! I was thrilled to see her appetite growing. Thank you, God!

Lily and Luke are not in the same age group due to their age difference, so we attend two games per game day. During the week, he still attended practices after he got his cast. He wanted to keep up with the team's plays, drills, and all that other football stuff so he doesn't miss out. The coach put him as team captain for the game. He walked up and down the side of the field with his team, content being a "benchwarmer" to still cheer on his team. I love his team spirit and drive!

After the games, Lily wanted to eat fish. We enjoyed a late lunch at Dempsy's where she not only ate fish but shrimp, french fries, and green bean. It was a beautiful day!

Go Wildcats!
My Sweet Pea. 
Team Captains. 
We are pigging out at Dempsy's!

Roger and I are very thankful to our employers for being understanding and accommodating during this time. However, after the scare from week 4, we thought it would be best I resign from my job for the remainder of her treatment dates, unforeseen sick days, and upcoming travel dates to St. Jude. So for the past few weeks, I've been a stay-at-home mom. 

Thanks for bearing with this long entry. I'll post "part 2" shortly. We are forever grateful for your constant prayers, thoughts, messages, and special gifts to Lily.