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.