Unexpected events

Friday morning Grace woke up with a sore thought. 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.