I am so glad and thankful the rest of the week was better than Tuesday. We figured out the trick to radiation, we give Grace Zofran 20 minutes before the treatment. What a difference. Thursday, as we got to the cancer center she wanted to walk down the six flights of stairs in the parking garage. She still has lots of energy.
She has been feeling good. She was able to meet the therapy dog at the cancer center. I think it’s funny, this whole thing started with her walking the dog, so every time they bring a dog to visit. I think it’s a reminder of how blessed we are to have found this. Bell is the name of the dog at the Cancer center. She brought Grace a stuffed animal that looks and feels just like her, ( the dog, not Grace, that’s just weird).Saturday, May 21, 2022
Much better week.
Wednesday, May 18, 2022
Radiation sucks
Yesterday, Grace went to school. She was so excited to see her friends. Her teachers are amazing, they let her eat lunch with them so she wouldn’t be surround by kids without her mask on. (She has to take it off to eat.) She said her friends asked a lot of questions, and they all wore face masks. And my little pumpkin said , “Thank you, Mom, for letting me go to school”. She loves school, she loves learning.
Today was the first day of radiation. The actual radiation treatment went smooth. They took her in, I sat in a chair right outside the room. They asked her what music she wanted to listen to. Then I hear Fight song, followed by Stitches, and then Treat you better. The whole process from the time she left me until she came back was about 30 minutes. She came back excited because nothing hurt, there were no needles. She felt good, looked good, everything was great.
Our appointment was at 4. It was 4:30 by the time they pulled her back, and 5 o’clock as we left. Which means 5 o’clock traffic. Fun fact about me: I get lost… like everywhere I go…I need GPS … and still get lost… We live in a very rural area. I drive on a two lane country road, 5 miles to work and five miles home. ( can’t get lost ) The cancer center is in a big city requiring me to drive on the interstate, and there are many times I need to switch lanes to follow the right route. Did I mention, I’m not use to driving with a lot of traffic. I missed a turn, drove to the next exit and pulled into a BK. I figured I’d grab her something quick to eat, and then hopefully the traffic wouldn’t be so bad.
Grace got out of the car, excited and happy she was getting chicken nuggets, we went in to order them and she suddenly said my tummy doesn’t feel good. She ate two french fries the left the table to be sick. My first thought was maybe we should sit here until she feels better, but then I thought how long is that going to be? And then she said…
“ I just want to go home.” So we jump back in the car, and fought the traffic to get my girl home. She threw up with the queasy drop in her mouth. She threw up the zofran. She threw up the ENTIRE way home, (and it was a long drive because I must have hit the GPS while at BK and it was taking us on an adventure. Thankfully I noticed before too long and redirected it. We got home about 45 minutes later than we should have. ) She was miserable… crying “ it hurts, I want to go home“ the whole ride home. (I was absolutely thankful for the puke bag we put in the cars with blue throw up bags, queasy drops, wipes, and. AIR FRESHENER! )
My heart hurts so much for her. I’m her mom, I’m suppose to protect her and make everything better. And yet for an hour and a half, my little girl was miserable puking and hurting and I could not make it stop. I could not promise it won’t happen again, because tomorrow we are going back, six more days of this for this cycle… then we have two more cycles of seven days each.
All I could do was drive her home.
It didn’t get better when we got home. She didn’t want to drink anything, because she’d just throw it up. She doesn’t understand dehydration. I just kept telling her to wet her tongue. Small little sips. We are giving her Liquid IV hydration drink mix. Hoping to keep her hydrated. She threw up until about 9:30. She went to sleep with a clean blue puke bag next to her , just in case.
Sunday, May 15, 2022
Cutting her hair
On Thursday morning, Grace woke up and decided she was tired of having hair all over her and wanted to buzz it. She seemed so ready. I was not. I kept stalling. I wanted to cry… Everyone says oh you are so strong. That morning, I wasn’t. I just wanted to crawl in bed in the fetal position and cry. Obviously I didn’t. I couldn’t , but I do have those days. She wanted to listen to Stand by You by Rachel Platten as we cut her hair. We buzzed her hair with the number eight attachment. At first, she was a little nervous but when she realized how much hair was left , she relaxed. She was so excited with the outcome. She asked when her hair grows back can she have this hair cut again. It is still falling out, and she changing her pillow case almost nightly because of the hair on her pillow case, but the short hair is not as irritating.
This picture was taken one Thursday.
She had the third dose of chemo on Friday. She has asked for a Zofran once a day. That is it. She wants to eat more bland foods, not greasy stuff, and she is really enjoying the Pediasure Gain and Grow strawberry shakes.
We thought we were starting Radiation this past Monday but they didn’t have the mapping plan finished. So we start this Tuesday.
We filled out the hospital home bound info for school, the doctor was pretty clear that on the days that Grace feels good she can attend school. So Monday she will go to school. However, it will only be Monday, Tuesday she starts radiation and it will continue Tuesday through Friday, then back again Monday through Wednesday… and sadly Wednesday is the last day of school. So it will be the only day she gets get attend. She is so excited, she has already picked out her outfit. She wants to wear the shirt she received in the mail from a very special family friend. It says “ Hold my Crown while I finish my chemo.”
She is a total trooper. She doesn’t need to wear the head covers yet, but she is totally comfortable wearing them. I know I’m bias, but she’s totally rocking it!
I do have a question, if anyone knows… does anyone know how to give this pumpkin the Lovenox shots without bruising her? We put lidocaine on her leg about 15 minutes before giving her the shot so it doesn’t hurt. She can feel the medicine going in but it doesn’t hurt. This poor girls legs though… the bottom bruise is a mix between a shot and bumping into the table. I just feel so bad. So any ideas ???.Tuesday, May 10, 2022
Shedding
I told Grace to brush her hair today… her eyes filled up with tears and she said, “Every time I brush my hair I get covered in hair.” … what?????? I thought I had read somewhere that she would start losing hair around week 10…. She must be mistaken.. very calmly I said come here I’ll brush it. I noticed a lot of hair in her brush so I pulled the hair out of her brush, then brushed her hair… she wasn’t wrong… I brushed about four strokes and her brush was full of hair again. It’s not clumps, it’s more like she is shedding.
Saturday, May 7, 2022
2nd infusion
Monday we went to the see the doctor who is giving Grace the radiation. They explained what will happen during the radiation treatments. She will lay down with her hands behind her head, as the machine rotates around her abdomen. Treatment will be for 7 days not 5 like we originally thought. There will be 3 rounds of radiation. Monday through Friday and Then back again Monday and Tuesday. The doctor explained the radiation will cause her to become nauseous. He also told us that after a few days of treatment her belly will be sore like a bad sunburn.
Wednesday, Grace had her second chemo infusion. It’s about an hour drive there. We left the house at 11:45, and didn’t return home until a little after 5. The longest part was waiting for the labs. Once the labs came back good, they ordered the chemo, and it only took about 10 minutes.
We packed a “chemo bag” which included a blanket, socks, activities like; Harry Potter uno, Highlights search and find, the iPad, fidgets, a book, coloring books, and colored pencils. We are so thankful for everyone who has given Grace an activity to keep her busy. When one of the nurses, noticed the search and find pictures, she suggested Grace play the Touch and play game.. it was very cool… they just wheeled it right up to her chair. It had many games to choose from. Grace really enjoyed playing it. I really made the time pass quickly.
Before we left our home, I put lidocaine on the port, and covered it with press and seal. When they went to put the needle into the port ( I know there is a technical term but I just can’t remember it) she really didn’t feel it, she never even said ouch… she said she can feel the fluid going in but the needle didn’t hurt. She did really well.She seriously she played chess while the chemo dripped. I was worried about her becoming nauseous before we got home but she didn’t. She came home, ate dinner and had dessert. We tried to stay ahead of the nausea. Last time about 5 hours after the chemo treatment she started throwing up. So we gave her some zofran right at 5 hours. She was able to sleep through the night but asked for zofran as soon as she woke up. She is still feeling nauseous, and asks for zofran about once a day. She is tired and has been complaining of a headache.
On Thursday, we went back to the Cancer center to have a CT done to radiation mapping. They said they wanted to start on Monday, but needed the doctor to create a plan of attack first. I haven’t heard anything yet about, what time or day radiation will begin.
Friday, we went to the pediatrician for a follow up from the surgery. Her incision looks good, the steri strips have not fallen off yet. The incision from the bulb drain is healing well. She has not lost anymore weight. I have been giving her protein shakes, with added ovaltine, peanut butter and bananas. When she left the doctors the battery in the van died. We had to go buy another battery. The girls stayed busy drawing and coloring while they waited for Joey to pick them up. However, he really didn’t need to come get them, the Chrysler service department had us in and out in about 40 minutes.
I have found that adding a timer to my phone helps me keep track with her medicine, and mouth care. She needs to use mouthwash (biotene) 15 minutes before brushing her teeth because two of the medicines she is taking cause mouth sores. She needs to brush her teeth three times day. They also suggest that she apply chap stick about 5 times a day to prevent dry cracked lips. So far, no sores!
I have also added reminders to eat. I am totally a stress eater however, more than once since this disease has taken over our lives, I will find my lunch in the microwave at dinner time. I know I need to stay healthy so I can take care of Grace. I also found that packing a cooler with healthy snack and/or protein shakes is a better alternative to grabbing McDonalds when we leave doctor appointments. I have noticed because we are on the road so much we grab fast food and I feel so run down. So healthy snacks are a must and better for her too.
I have also packed a nausea bag for the car. It contains blue puke bags (So you can just tie it off and throw it away.), wet wipes, and queasy drop candy. If there is anything else anyone can think of that might need to go in this bag, please let me know. We haven’t had to use it yet, but I want to make sure we are prepared when the time comes.
We spent the rest of the day Friday (today)decorating Thank you cards. All the girls chipped in. Crafting is a fun easy activity while Grace is still recovering from surgery. I love all their little personal touches.
I’ve had insomnia since 1999…. It actually went away from a few months last year… but now it’s back. I’m afraid to take the the doctor prescribed sleep aid because what if I don’t wake up when she needs me? What if I don’t hear her throwing up?
Again, I am so very thankful for my friends, family, and everyone praying for my girl. I am so amazed at all the kind gestures and support. Thank you from the bottom of my heart.
Grace is finished with radiation. Yay! We thought it was going to be 3 weeks of 5 days spread out throughout the chemo. However they decide...
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Grace is finished with radiation. Yay! We thought it was going to be 3 weeks of 5 days spread out throughout the chemo. However they decide...
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‘Mom, I think she’s really hurt.” Were the words Jennifer said as I answered the phone. Jennifer explained that Grace had taken Oliv...
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I am so glad and thankful the rest of the week was better than Tuesday. We figured out the trick to radiation, we give Grace Zofran 20 mi...