Unexpected events

Friday morning Grace woke up with a sore throat. When I peeked at it you could see it was red and the bumps starting to form. Bill was able to take her to the her primary doctor. She tested positive for strep and low grade fever 100.2.. if she has a fever of 100.4 more than two times in a 24 hour period she needs to go to the ER… well that’s what happened… even after a full iv bag of antibiotics was pumped in her she still had a fever…they admitted her because her Neutrophils were 0. To go home three things need to happen.

1. no more fever
2. blood cultures need to have no growth
3. her ANC needs to be 200.

as of today there has been no change in her ANC .. still zero. However she has no fever and no growth in the cultures. They said each kid is different. It could take 2 days or 5 days for her ANC to go back up. This is all new to me.. none of this happened last time. So going in I was thinking she’d get antibiotics and go home the next day… nope … because it was unexpected I didn’t have bags packed. I literally just threw some things together but definitely not enough for 5 days. I also left in a hurry and didn’t grab her “chemo bag” with her activities to keep her busy. We do keep this bag packed and ready. I just didn’t think to grab it.

Thankful I did have a deck of cards and monopoly deal. Once her throat felt better these kept us busy. We also watched a lot of movies because we were quarantined to the room being she had strep.

Another unexpected event…. Her hemoglobin has dropped down to 7.2. If it goes lower than 7 , she will need a blood transfusion. They think tomorrow. When this was mentioned I asked Grace how she feels? Does she feel tired, sluggish , is anything feel off.. she said no. She feels fine. She is amazing.

So today we researched how to increase her hemoglobin. She ate the iron rich foods that are available at the hospital. Hoping it brings it up.

Praying that the morning labs show positive progress.

I will tell you how eye opening it is that my child had a sore throat on Friday and is looking at a possible blood transfusion on Monday. Cancer doesn’t play around.

thank you again for your continued prayers!

Hair loss

Wednesday July 2nd ,Grace went for Labs to see if she needed a transfusion. Her counts were within range for a patient going through chemo. This appointment we had to go to the hospital for (I hope I remember this correctly) because 7 days after the first dose of chemo is when her numbers drop the lowest. So if she needs a transfusion she is right there ready to get it. Her numbers were good, no transfusion needed. This will happen with every cycle.

Wednesday July 9th , we were able to go to a closer branch of the hospital to do labs because it was less likely that she would need a transfusion but they still need to track her numbers.

So it’s chemo on week 1 , then labs weeks 2&3 . Then the cycle starts again. On Wednesday, July 16th she will go in again for cycle 2 of chemo.

Wednesday, July 9th is also the day she noticed her hair starting to fall out. You know how it feels when you have a random hair on you that is annoying you but you can’t seem to see it to get it off. That’s how it starts, except times 20. When she brushes her hair the brush fills with hair enough that she has to empty it twice before she’s done brushing it.

This started Wednesday, she went to camp Thursday and when we picked her up, the hair loss was noticeable to us. You can see her scalp. The poof of curls and sides are so much thinner.

She jumped in the shower and came out with her night cap ( curly hair needs a silky night cap) on already. I gave her a quizzical look, she said,” I hate this part” as she took off her cap and started crying over the amount of hair loss. So my 12 year old daughter who is taller than me, crawled on my lap as we both cried. She doesn’t want to go to camp now. She doesn’t want people staring at her or making fun of her or avoiding looking at her at all. I remember this part. The awkward stares , the cashiers who won’t make eye contact , the little kids,” mommy look at the bald girl” Last time she was SUCH a trooper. She didn’t want to wear the wigs. They are hot and itchy. She just said this is me…it’s a little different in 3rd and 4th grade than now that she’s entering seventh grade . It’s hard even for tough cookies… it’s hard….

this morning she woke up with a huge knot in the back of her hair. When I went to look at it, I could lift it up off her head like a toupee. I have never seen anything like it. We tried for about an hour to get it untangled before she decided. Let’s just shave it.

It just started Wednesday and iead completely noticeable 24 hours later. Begin to expect hair loss 2-4 weeks after chemo. So here we are week 3.. right on track…not just with hair loss but now bald.

I want to thank everyone who bought her chemo hats. Thank you , Thank you ,Thank you to everyone who is helping out . From gas gift cards and protein shakes, to watching the girls or sending articles about foods that fight cancer. Thank you so much . We appreciate it all and everyone of you!

Discharged

this is definitely a TMI post. She had constipation. Thats why she was in so much pain. They gave her meds for relief and she was up ALL night going potty. She did eat breakfast … and was able to keep it down. She threw up once today during the car ride home. But now she just wants to sleep.. probably because didn’t sleep much last night. She still doesn’t want to eat much. I did get her to drink a protein shake for lunch… so much better than yesterday! Thank you for your prayers!

Staying another day

She is miserable today. She just wants to sleep. We keep waking her up every 10 minutes to take a spoonful of soup and a sip of water. She has literally drank half a glass of water and about 10 spoon fulls of soup… two separate soups … The first one got cold so we tried again… all day .. that’s it… we ordered more food hoping she’ll try.

It’s not enough . They are keeping her another day. Hooking her back up to the IV. She’s so upset . She just wants to go home.

She’s not in the fighting mood today. She doesn’t want to wear a cape today. They gave her zofran. I had to tell her twice to take it. They gave her miralax and told her to drink it in a 30 minute time frame. I had to really get on to her to make her drink it. I hate this. She is sick and miserable and looking at me with these pleading eyes to make it all go away and I’m being firm .. “drink the darn medicine!” Instead of cuddling next to her on the bed saying it’s ok .. you don’t have to ….

Earlier she was in pain , walking seemed to help it. As we walked around the floor , Grace pointed out the signs and decorations on the other patients doors. So I’ve been trying to find some removable window cling inspirational quote or something to decorate her door for the next cycle in 3 weeks.

We brought silk pajamas to help her slide in and out of bed, and a silk pillowcase because she has amazing curls that get frizzy when on a regular pillow case. I did not take into account that they change the sheets everyday. So note to self… pack enough silk pillowcases for the entire stay… and an extra everything incase we have to stay an extra day. Like pajamas . She will have to wear the hospital gown tonight.

Also bring extra warm fuzzy socks… my feet are freezing and normal socks are not cutting it…

For three days the TV has been on… even at night while we were asleep because the remote doesn’t work and we couldn’t figure out how to turn it off. Today Bill was playing with it and was able to use the laptop board to turn it off. Yay…. The problem now is we can’t figure out how to turn it back on. Not even the nurses know how. So Thankful for cellphones and iPads to keep us entertained so we don’t go crazy thinking about the what ifs.

Keep praying for our girl…pray for her to keep the fight up. This is stronger chemo than she’s had before. It’s a hard cycle. I don’t think she wrapped her head around the challenge of the fight this time…. We’ll let her rest today… tomorrow she can put her super hero cape back on. I mean even Batman takes a break from fighting evil.

Here we go again…

On May 23rd, Bill took Grace for her routine CT scans. They found something. Every once in a while something will come up and they will ask us to come back for another scan . It has thankfully never been anything serious… BUT this time they said come in for a biopsy.

It was the last week of school so we decided not to tell her until we knew when the biopsy was scheduled. We didn’t want to stress her out and wanted the last week of school to be fun with her friends.

We had hopes that maybe it was scar tissue but knew better by the bloodwork results.

Children pick up on everything, little turkeys . They are so much smarter than we given them credit for . Grace proved this at dinner one night, as she prayed for Mia to have guidance through her journey with diabetes, she then added, “ help me with my cancer” . Dumbfounded, Bill and I both just looked at each other. She knew because we never told her that her scans came back clear. So, we sat her down and told her what we knew. She cried, she didn’t ask why , she cried saying I thought they got it all last time.

We went in for the biopsy on June 4th… and they confirmed….It’s back. Located in the same area… and much smaller than it was in 2022.

SO … it’s back and it’s a harder regimen. It’s called ICE .. she has to be hospitalized when receiving the chemo not just in clinic like last time.

its 10 cycles - 21 days in each cycle so its 30 weeks of treatment.

2 different regimens. The 1st regimen are for cycles1,2,4,5,7&9. The Second regimen is for cycles 3,6,8 and 10. The 2nd regimen is 5 consecutive days of chemo .

So today she starts cycle 1 . We left the house at 4:45 am , and arrived at the hospital at 6. Thank you Jenn for driving. She went in for surgery at 8:11 and a little after 9:30 Dr. Chang came to tell me she did great. I got to see her about 10:45ish and they took us but to the 7th floor to prepare for chemo.

stronger medicine requires a hospital stay. All these medication will be given to her three consecutive days.

Etopside-causes mouth sores so they recommend eating ice chips for the full hour it’s being injected. She had to be watched closely for reactions to this medication. ( she did great today)

then she was given mesna which protects the kidney and bladder because one of the chemos causes damage to the kidney and bladder. Hold on.. she has nephroblastoma.. Wilms Tumor.. kidney cancer. She only has one kidney left…

Next is carboplatin

Then ifosfamide.

They gave her three medicines for nausea. Two last for 24 hours and one is every six hours. Last time she was on zofran…. That alone tells me how much more aggressive this treatment is. Chemo was started an hour after the nausea medication is given… so about 5 o’clock pm.

today sucks. It absolutely sucks… it’s raining.. even the weather is sad.

I can’t wrap my head around how this beautiful girl is seemingly healthy, last week she was running around climbing on jungle gyms… and today we are giving her medicine that will make her sicker than she’s ever been before. As they put the IV in ( before surgery) and she looks so sad and miserable . But never says why me.. just” I hate this part…” my eyes swell up with tears… my heart breaks for her. She looks at me for reassurance and shakes her head yes.. yes baby girl we’ve got this. We will fight like hell … I HATE this whole thing. She is so brave and I hate that she HAS to be so brave.

As a mom you want to tell them it’s going to be ok… but it’s cancer and it’s back …. So you can’t make promises.. you can just fight like hell.

 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. 

Bam

Grace has this incredibly thick curly hair. It's the type of hair that needs a lot of conditioner, and should not be brushed unless its wet. Here she is in this hospital bed, moving her head around, her hair is getting knotted, almost matted. Everyday, as I brush it , I add leave in conditioner, and now coconut oil in her hair, to help with the tangles. As I sit thinking how can I fix this I started scrolling Amazon looking for satin pillow cases, like the one she has at home... and up pops a satin sleep cap... and then a chemo head rap...... Bam....excuse me a moment while I pick myself up off the floor.. I am trying to buy a satin head wrap for my daughter's crazy hair that she won't need because she is going to lose it due to chemo... Bill stayed Sunday night at the hospital with Grace. I was only at the hospital about 30 minutes when the nurse came in ready to move us to the oncology floor. ... why weren't we already packed? We quickly packed up everything and dashed off to the onocology floor/section. The nurses were bustling around Grace...getting IV bags ready...and one of them said something to Grace about meeting the needle ninja who is the best nurse for accessing the port... I stopped and asked what are they giving her........ Bam.....woowa.. getting up off this floor is getting rough on the knees..... They were getting her port ready for the first chemotherapy treatment...WOW... it's happening... today if the labs come back good. The doctor came in at 1 ( our requested time) explaining the roap map... the treatment plan Reginmen DD-4A. This regimen will last 28 weeks...... Bam.... Let me stay down here a minute to digest this.......seriously 28 weeks...that is not a typo...it is 9 cycles of chemo over a 196 day period. Once a week we will come back here for treatment. They will be giving her 4 different types of medicine in different combinations each week. During the roadmap explanation, we paused as the needle ninja accessed Grace's port so they could draw blood. Bill spoke more with the doctor about the plan, while I tended to Grace's needs. I still have a couple questions that I have written down that I missed...Like the radiation treatment, according to the plan it looks like 3 weeks,(not 2) and my understanding is it is everyday M-F. I know that is not here but in Tampa.

Brea, the therapy dog entered as the doctor left. They put a sheet down so Brea could climb on the bed and sit with Grace. Brea was the sweetest. They showed Grace some of the tricks Brea can do..like speak, high five, sneeze and play uno. Yes Uno... we were quite impressed ourselves.

While Grace was being entertained by the therapy dog, they came in to teach us how to give Grace the lovenox shots. They took us to a different room, and had us each actually practice giving the shot. Clean your hands, clean the poke spoke, insert needle at a 45 degree angle, insert medicine, pause before pulling it put, remove needle and press hard on the syringe and a plastic needle gaurd pops up for protection. Got it. Both Bill and I did it like pros. Great news if Grace does well with the chemo treatment, we will get to to home on Tuesday, or Wednesday. So today is a training day.There are a lot of training videos to watch and a Childrens Oncology book to read. ( they actually went through the book with us) The labs came back great. They came in and gave her an IV bag of fluids. Then gave her some Zofran for nausea , Vincristine and Dactinomycin. I was shocked at how fast the meds were given. Seriously her first treatment of chemo was down in about 15 minutes. not painful. She ate a blue ice pop as the chemo bags dripped, then a oreo milkshake to keep the metallic taste out of her mouth. Anna from a support group Child Life came in to help explain to Grace that she might lose her hair. She also gave Grace Chemoduck. Grace named him Fred. He has a chemomport like her. Anna gave us a lot of other useful information about support groups. We have seen three different people from Child Life. They have been an amazing resource. She also gave us some Beads of Courage to do at home with our other children.

After dinner, Grace and I were putting together a puzzle when the nurse came in and said,"It's time for the lovenox. Mom, they want you to give it this time." Ok you can say it with me... Bam...that was like a kick to the chest from Ronda Rousey... I think I even felt the floor shake as I hit it this time.....I wasn't quite ready.. they trained us to do this ...but in the training its missing the live element of your 9 year old daughter who is looking to you for comfort with those big brown eyes... "Mom can I hold your hand?" she asked. "Not this time baby girl. I'm going to need them both." Poking a needle through skin is not as smooth as you think. The first layer is a little tough. So I poked her and it didn't go immediately in. I had to push harder. She is such a trooper. I kept apologizing to her, telling her I'll do it faster next time... but I'm afraid of jabbing her. Sweet girl that she is ...she apologized for crying because she could tell I was struggling with having to poke her. I'm so not a Pro...I'm sure I will get this before to long but right now...I hate this. Shortly after that, Grace began to feel queasy. She threw up at 10:10pm. The nurse came in and gave her more zofran and tylenol... Grace has been sleeping peacefully ever since. So here I sit rubbing my checks, recovering from the blows thrown at us today, watching this beautiful girl sleep... And being so thankful for these amazing doctors and nurses that are moving so fast to treat her...we are so thank for all the support we are being given. Although we may not understand God' plan .. we know he is in control. and tonight I'm singing along to Chumbawamba... "I get knocked down but I get up again... Cancer your never going to keep us down."

Tube Free

"I've got no tubes to hold me down to make me fret, or make me frown I had tubes but now I'm free There are no tubes on me" We are singing our own version of Pinocchio's song... Yay they took the drainage bulb out this morning. However, she has not been drinking very much so we are making small goals to drink four small bottles of water, so they don't put the IV back in to keep her hydrated. Her throat has still been hurting. They have been giving her a cloraseptic spray which has been helping a lot.

Yesterday she kept busy playing lots of card games, writing in her super cool Wreck this Journal, and putting together a puzzle. Puzzles are a tricky thing in the hospial. there is one table for food, when food comes the table needs to be cleared. So we did the puzzle after dinner and had the rest of the night to finish it. We also have been painting sun catchers. I can't tell you enough how much I appreciate everyone that has brought Grace something to keep her busy, word searches, books to read, pop its, finger nail polish, games... so incredibly blessed with our support team. Thank you...

We have also played some music. We need upbeat song suggestions. right now our play list consists of : Happy by pharrell Williams Sing your Praise to the Lord by Amy Grant thunder by imagine Dragons fight song by Rachel Platten Believer -Imagine Dragons Whatever it takes-imagine Dragons for example Skin by Rascal Flats.. great song... not upbeat.. she asked for Memories by maroon 5... I played it because she asked but I try to skip it... makes this momma cry... I want happy upbeat.. get out of bed and dance music. .. so,if you can think of some upbeat, happy songs please let me know. I also want to comment on what a ROCKSTAR this girl is... Last night and this morning, she did not make a sound, not even an ouch when they gave her the blood thinner shot. She has been choosing to have it in her legs, not the belly.It seems to be a better spot for her. Mrs. Damm made this awesome shirt for Mr. Twinkle. Grace loves it so much.

Also, If you have any great soup recipes, that you'd like to share that will help Grace get through Chemo. I would greatly appreciate it. I am just trying to get my ducks in a row now. Tomorrow Dr. Beaupin is coming in to discuss treatment. So those of you asking what can I do to help.. right now... I need happy, upbeat songs, yummy soup recipes, and prayers... Thank you... Thank you for continuing to pray for my amazing girl...

I usually am pretty good about putting my thought down on paper.... Today... I'm struggling....We received the pathology report. Grace has Stage 3, Wilms Tumor, Favorable histology.. which has an excellent survival rate... I am so thankful... the tumor did rupture...lymphnodes are clear, it did not spread... what does this mean for treatment... chemo and... radiation ... I know .. so much to be thankful for ... then why am I so sad over that.. honestly I really don't know much about radiation.. I didn't want to research it... it scares me...she is 9... I still don't want to reseach it... In my head if i didnt research it.. then she wouldn't need it... that didnt work out so well for me, did it.....being a mom is hard today... she is only 9... The oncologist, Dr. Beaupin is meeting with us on Monday to go over the treatment plan. The road map , she called it. After radiation, 2 weeks of radiation.. I really don't remember what else she said... Grace has a blood clot...She needs to start blood thinners... two shots a day in her belly for at least six weeks... possibly 12...

I dont want to seem ungrateful. I am so thankful, that this cancer has such a great survival rate. I am not looking forward to the treatment... Grace did get the last IV removed today, and only has the JP drain/suction bulb attached to her. She is up walking around, climbing in and out of bed... doing very well. once again, I want to say thank you for praying for Grace. She is an amazing kid. I am so proud of her bravery. She wants to know when the cancer goes away can she go outside to play....

New Prayer request!

   Today we get to celebrate  Grace getting to have something by mouth.  The NPO order was dropped. Now a clear liquid diet is allowed. The desired blue raspberry icee was not the first thing could she have but she was able to finally have one. The doctors wanted her to try sipping on water first. She was also able to keep down some warm chicken broth. 

  AND…. This is the exciting news! She was able to get out bed and walk down the hallway. She has been getting out of bed to go potty, and to sit in a chair but not actually walk far. So we are super proud of her determination. 

   Mia was able to visit Grace today. We entered the room with bags of gifts and activities to keep her busy from friends at the school. As Grace opened the gifts, she said, “ you know that song Happy? That’s how these gifts make me feel.”  Grace was excited to play with her sister. Although Grace was a bit grumpy and didn’t finish either game they started. She was hangry… She doesn’t want chicken broth, she wants chicken nuggets. 

    Grace’s oncologist came in today.   She said they had some of the results back. They are working on a diagnosis of a Wilms Tumor. They don’t know the stage or treatment plan yet. They have one more doctor that needs to look at it, and one more test. Then she said a team of doctors would come in to speak with us…I think she said Thursday…maybe …we are hoping to know as soon as possible so we hear what we want …  It may be Friday.

    When the doctor in the ER mentioned Wilms Tumor that first night, I started doing a little research on it.  Here is the link to American Cancer Society about Wilms Tumor.    https://www.cancer.org/cancer/wilms-tumor/detection-diagnosis-staging/survival-rates.html It has a really good survival for favorable histology….so this is our new prayer request… please please pray that it is has a favorable histology!!!!!!  

This is in the abstract statement from National Library of Medicine.. https://pubmed.ncbi.nlm.nih.gov/8712292/.      The letters FA is Focal Anaplastic/ DF is Diffuse Anaplastic  and WT is Wilms Tumor…..  s

So again… I ask that you pray that it has favorable Histology…..

   I have been scrolling my photos to see if there was something I missed. Grace has a solid stomach, she has muscles. She is strong. But for real, how do you miss a 6inch 4x4 tumor? 

Do you see a 6inch 4x4 tumor? 

I have looked and looked.   There a few pictures where it looks like she ate too much. But nothing … absolutely nothing to make me think… oh wow let’s go to the doctor.  However I did take her to the pediatrician on February 2nd for her annual Wellness visit…yes you read that right… WELLNESS visit…. Seriously we only went because she hadn’t seen the doctor in a year because she was NOT Sick…And in February… two and a half months ago…The doctor didn’t see anything either. 

She is strong, not sickly. 

             

        This girl loves to play.. she rides bikes, climbs trees, jumps on the trampoline…she is a tough cookie. I can’t beat myself up for not seeing it… no one saw it… no one….

So my wonderful prayer warriors… please pray that it is has a favorable histology…. And thank you again for praying for our amazing Grace… I am so grateful for the abundance of support and prayers we are getting, not just for Grace but for the the whole family. Thank you for your kindness. 

Brave like Batman

 We have a lot of things to celebrate today. They removed one IV from Grace. They turned off the epidural  but left the wires in to see if she could handle the pain. She still has a button to push to deliver pain meds through the IV that remains.  Grace only pushed it twice and not even for her stomach, but because her throat hurts. Because she did so awesome handling the pain, they were able to remove the epidural. Yay! Two tubes gone in one day! Whoop whoop!

   The also turned off the suction from the NG tube and are using gravity. If her belly can handle it they will remove the NG. However by the end of the day, they decided to wait another day. So she is still can not eat anything by mouth. She really wants that blue raspberry icee, she mentions it everyday. It is currently 6 am on Wednesday, April 20th, I just got a message from Bill with a picture of a very happy girl without the NG tube…. So now 3 tubes out- 2 more to go! I will post as soon as she gets the blue icee!

   Today was a little emotional for Grace. She felt like she wasn’t being brave because she cried. We explained how being brave is be being fearful and doing it anyways. You can cry and still be brave.    

 There was some crying today , and the statement “ I can’t” came out of her mouth….  so we talked about how Grace is like Batman and how brave he is going to fight Mr. Freeze who is like the cancer . It is Batman’s fight. But Robin (mom and dad) is right there by his side, fighting along beside him. But Robin can’t do it with out Batman. It’s Batman’s fight…if Batman doesn’t fight then Mr. Freeze will take over Gotham City (her body).  I told it’s it’s ok to cry. It’s ok to have a day where you just want to lay in bed and cry… One day though… Then you pick yourself back up and start the fight again.  

   The same goes for me, someone commented, “ I don’t know how you are doing it, I couldn’t”  you know what I couldn’t do? I couldn’t stand by and not give it everything I have. I could not live with myself if I had any regret thinking I wish I would have fought harder. You could and you would.  You might not want to imagine it… You might cry in the shower everyday, …You might beg God to let you trade places with her. But when your child is sick, you don’t give up the fight. You fight until you have given it your all. 

I am truly overwhelmed by the outpouring of support we are getting. I want to thank everyone who has shared these posts asking for prayers for Grace. I truly believe in the power of prayer. Thank you for praying for my amazing Grace. 

Ironic

  This morning Grace woke up almost in a panic, it was like she was struggling to breathe. Her throat hurts so bad. She looked me straight in the eye and said, “Is it my fault. ”  I cried for 2 hours straight…How do you explain Cancer to a nine year old?

   I’m trying to be strong and not let her see me scared… but I can cry in front of her to let her know it kills me to see her in pain. She cried as they drew blood ( she really hates needles) from her hand today, looking to me for strength…. I just told her to breath and squeeze my hand as she looked into my tear filled eyes. 

  This morning was the first time she said her stomach hurt. She still has the epidural in. It should be blocking the pain. The NG tube (Nasal gastric tube that is coming out of her nose) had dark fluid/blood running through it. They believe it had suctioned/scraped her stomach lining causing irritation. She was given some Pepcid and some Valium. 

At 9:57am this is what her NG tube looked like… 

   

At 6:15pm After the Pepcid  

 The JP drain/bulb suction was emptied around 8am with 42cc, then again around 10am with 90 cc. That’s a lot.  It had a small clot in the tube which stopping it from draining properly, so when the clot passed, the fluid was able to come out rather quickly.  Now it is back to the normal drainage amount. 

Her foley/catheter wasn’t draining urine this morning, so they took it out. The doctor said if she didn’t void her bladder in 6 hours they would do more testing. I am very happy to report she did go potty! (No pictures of that lol)

I know as I type this, I type the problem and the solution, but as each issue occurred, it was scary, waiting to find out what is going on, how to fix it, is she going to pee on her own?  Today was a rough day. But I’m so proud of my Amazing Grace for powering through. 

They gave her a goal to get out of bed 3 times. Grace shook her head no… the doctor chuckled… and asked,”are you telling me no” tiny pep talk reminding her that every time she gets up it will get easier and easier… and just like that my girl was mind over matter again… They said not to over do it and two times out of bed would be ok but they would really like three. You know my strong-willed girl did 3 and made sure to point it out. 

She slept most the morning because of the Valium. When she woke up she was not in pain, all her tubes we working well, and she was ready to kick some booty playing war, trash and uno.I believe she was even giving a little sass to Ms Orndorff.

She is not running a fever, the wet wash cloth is a comfort thing I think. She had it first with the fever, then a headache and now just because.   She says she’s hot.. but ya’ll it’s freezing in this room. 

The breathing thing with the blue ball (yes that is my kindergarten teacher technical name for it)  is her BFF.  She feels better when she uses it. She uses it way more than they asked her to. They said ten reps once and hour. She has it in her mouth a lot. It’s almost like she thinks it has medicine. She says she needs it… she literally fell asleep breathing with it. 

Jennifer sent me a memory from her time line. 11 years ago today, we were in Boston, 11 years ago, I was fighting for my child’s life, testing Jenn because HCM is genetic. Not knowing what to expect. That’s a little ironic don’t you think. A little too ironic..and yeah I really do think…. The song has a line that  goes “ and as the plane crashed down, he thought well, isn’t this nice?”  Like Grace yesterday, in the chair when she finally fought threw the pain , sat down and said,” well this is nice.” 

This song, it may be my theme song for this hour. I can take an hour , while she sleeps and put my head phones on and listen to Alanis Morrisette. Because yes this is a little too ironic.