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 decided 1 week of 7 days was enough. 

So on day 7 ( which was last Wednesday) she was able to bang the gong! 

. Chemo treatments are now on Fridays. Last Friday she weighed 69 lbs. her white and red blood counts were within the normal range. She was able to play the video game machine that they have. She loves playing chess on it. 

This past weekend, we were able to escape to the beach. It was beautiful and relaxing. Grace had fun playing in the sand. The doctors recommended she only go into the water up to her knees, and only if she had no open wounds, sores, bug bites, or anything that could get infected.  She had lots of sunblock on and wore a hat to shade her face, and a swim shirt to cover the radiation spot. 

    Grace has been struggling with eating, she doesn’t want to drink anything either. We bought and have been given cases of  strawberry pediasure (that’s her favorite).  I was having her drink 2 a day, one as a morning snack in between breakfast and lunch, and one as an afternoon snack in between lunch and dinner.  Now she is taking all day to drink one. She is not drinking enough water. I don’t want to nag her, so I thought I’d by ice pops , Italian icees, and things like that to get liquids in her. She doesn’t want them.  We have Strawberry flavored Liquid IV, to help with dehydration, and she will not drink that either. 

    On Tuesday, Grace was hunched over when she was walking, complaining of pain on her right side (opposite side of the tumor). She wasn’t keeping any food or liquids down. I took her back to the hospital, we got there at 4p.m. She weighed in at 66 pounds, a three pound difference from Friday. They did an ultrasound on her liver, intestines, pancreas, kidney and tried to check her appendix. They ended up doing a CT to get a better look at her appendix, but everything was fine. They hooked her up to an IV as soon as we got there, . They gave her zofran for the vomiting ( we gave her some at home but it wasn’t working) and morphine for the pain. She was feeling so much better. Her labs came back that her red and white counts are low, as well as her platelets. They gave her some crackers and gator aide and when she was able to hold it down, they said we could leave but I need to keep a close eye on her and if she starts throwing up, runs a fever, or is in pain to go right back.  So we left the hospital at 6 a.m the next morning so we could be home for Mia’s birthday.

Tomorrow is chemotherapy day. So We will see what her labs say about her blood counts. We are also suppose to make an appointment for a follow up on the blood clot. It’s been six weeks of blood thinner shots. She may have to do 12 weeks,  but they said maybe just 6 weeks depending on how her body reacts.  We are hoping it is just 6 weeks and hoping she hasn’t lost more weight.

We are so humbled by the outpouring of support. Thank you just doesn’t seem to encompass the gratitude I feel for all the thoughts and prayers. We feel so truly blessed for such wonderful friends and family. Thank you.
 

Much better week.

  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).

   When we left on Thursday she wanted to walk up the six flights of stairs. We compromised and walked up three and rode the elevator the last three levels.  So now every time we go I know I need to park on a floor closest to level three. 

    She also got to shave her daddy’s head. Last week when she wanted to shave her hair, I wasn’t ready. Now she needs a little more time. I try to reassure her that the medicine is doing it’s job. If it is killing her hair cells then it must be killing the cancer cells, too. I don’t know …maybe it’s what I need to hear … every night when she takes her head wrap off, I have to take a step back and compose myself. It’s shocking to see the difference…. And there is a difference everyday…. I think the hat hair adds to the dramatic look because her hair is smashed to her head. When she gets out of the shower and brushes it, it looks better..but still so thin.

Friday , she was in good spirits.  When we first go in they take blood to do labs, they have to access her port. This is what her port looks like . 

     Our appointment was at noon. It usually takes a couple hours for the labs to come back. Then the actual infusion time is about 10-20 minutes. One of the medicines is only 5 minutes.  Grace spent a lot of the time doing the search and find hidden picture book and then playing Adventure academy on the iPad. Today it took much longer than usual. There was a misunderstanding in the lab and they didn’t have the chemo ready until 4. Which was when our radiation appointment was, so they sent us to radiation and told us to come back after. 

   When we came back for the infusion, we were the only patients there.  She had the first dose of Doxorubicin. One of the side effects is pink or red color to urine, sweat, tears, or saliva. They gave her more zofran, because she had both chemo and radiation.  Grace says the worst part of all of this is when they take the tape off her skin from where the secure the port.  It’s funny when they are little, they want band-aids all the time.. now she begs to not have any. We finally got home a little after seven P.M. 

      I am so glad the rest of the week was not like Tuesday.  That was the worst.  Not just her reaction to the medicine was but , but the drive home was so much better too. My GPS even took me a different route that has much less traffic. 

    Grace has a little bit of a stuffy nose ( we are watching it closely)  so we are not visiting or having visitors this week. Thank you for understanding. Thank to everyone who has been praying. I am truly amazed by the out pour of love and support. I know it’s sounds odd to say while our family is going through so much, but we truly feel blessed to have such wonderful support system.  Thank you. 

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.  

    

Cutting her hair

     She is so much stronger than I am. I had a hard time dealing with her hair falling out. We spent sometime trying to prepare her for it. She has a bald American Doll, given to her by a super close family friend. We’ve talked about it, about what to expect, it’s just hair, it will grow back. Ordered her a halo wig but seriously are you every really prepared for  this? I was not. I didn’t want to talk to anyone because I knew I was struggling…. If that’s how I was feeling, how is she feeling? 
   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.

And this next picture was taken this morning...on Sunday of the same week. 

She is shedding, no huge clumps, just strands of hair every where. Thankfully we can still style her hair to cover the bald spots. I wish I would have thought to take a picture of how incredibly thick her hair was. 

    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 ???.

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. 

I’m at a loss for words. I just thought we’d have more time. 

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. 

What a week

    On Tuesday, Grace was really struggling with drinking and eating. She had a horrible headache. She started to get dehydrated. They hooked her up to an Iv , gave her some fluids.. and like magic...she was better. She was feeling so much better they decided she could go home. WooHoo!!! They did have to adjust the lovenox dosage ...because she has lost 14lbs. She is down to about 59 pounds now. We also had a little hiccup with getting the needles from the pharmacy ... then all the i's were dotted and all the t's were crossed.. and we were finally able to go home... to a home with a broken air conditioner . We crashed at my moms house( who just got out of rehab on Monday). It was good that I could keep an eye on both of them. Senica Air hooked us up and now our air is running great. 

     Since we have been home, Grace has been able to keep food down. she struggles with drinking enough fluids, and is probably really tired of me telling he to drink. she is eating, but not like before. We both still hate the lovenox shots. I am getting better at giving them. Amazing Grace is becoming more  brave at receiving them,   especially if dad can hold her hand. 

       Remember the shirt, Mrs. Damm made for Mr. Twinkle? Well.. Mrs. Damm has been a wee bit busy… because it seems she didn’t stop. The shirts say Gold aforesaid Grace. It’s purple because purple is Grace’s favorite color. The gold lettering is for childhood cancer. There is also a golden snitch from the Harry Potter series, because she really likes Harry Potter. 

      Grace, Addie Hope and My granddaughter, Alison are all in chorus. They have been practicing songs for the chorus concert for months. Every morning, on the way to school, the girls would be singing their little hearts out in the van. Grace was so upset that she wouldn't be able to sing in the concert. Our amazing school decided to have Grace join her friends singing via zoom. One of the most amazing people ever, stood with the other children singing, holding an ipad so Grace could sing along. It was super sweet. Grace struggled a little bit because the sound was going in and out but she did a great job.... One of the songs is called I was here ....and its a cute song..when the girl swould sing it in the car. I would think how stinkin' cute... but now.. as I listened to Grace sing it...I BAWLED LIKE A BABY... 

    "I want to do something that matters, say something different,something that sets the whole world on its ear, I want to do something better with the time I've given , I want to try to touch a few hearts in this life , if nothing less than something that says I was here." Oh My goodness... this sweet baby fighting cancer sing this song... I want to do something better with the time I've been given... do nothing less than something that says I was here.” .. I’m not crying.. you’re crying… ok for real… I'm still crying. 

   

        Then they sang a song We're all in this  together... The tears wouldn't stop... and I was trying my best not to distract Grace who is just singing and trying to focus on the songs... So I just told her, I was crying because it's so beautiful...They picked these songs and were singing them for months before Grace was diagnosed... but these songs were so meaningful... The district made a little video .

      Grace had a couple visitors today. She loves seeing people. She hasn't learned yet, that its important to rest, and its ok to let visitors know that she is tired. So we might limit some visits to zoom calls instead until she understands its ok to rest. She read with Mrs. Bonnett (our principal), through zoom. She is just too stinkin cute. Mrs. Bonnett being the amazing person she is , told Grace, I'll listen as long as you want to read. 30 minutes later, Grace was starting chapter 6... LOL...She does love to read... I didn't snap a picture today but we did get one when she came to the hospital to play uno with her.

    I am so thankful and blessed to have such amazing family, friends, and people praying for Grace and the entire family.