Scans scheduled!

We have officially scheduled the abdominal ultrasound and chest x-ray appointment for Monday, 11/26, 8am. This is the appointment to officially end her chemotherapy! As long as the scans are clean (no signs of tumor), we will get our "off therapy" schedule and meet with the surgeon to remove her port. I am so excited and so nervous all at the same time. Definitely more excited!

E says...

For the most part, Evelyn keeps a cheery disposition. Of course she is thin and her skin is a little pale. Her hair has only thinned a little. She smiles, plays, acts out, and gives me plenty of attitude! She gets tired more quickly. But most wouldn’t know what is going on inside her little body. Every now and then she does or says something that brings the reality to the forefront and highlights how she internalizes a lot of her feelings. This has happened several times over the last few weeks.

The other day in the bathtub with Nahna. E was role playing again. E was Dr McClain. Ariel was the patient. E was fixing her up and singing a song about the doctor. It makes me sad that her fun/role play is so focused on something so sad.

The higher doses of the V drug have been taking effect. She has had more mouth sores than before. We catch her with what they call “foot drop.” She trips on her feet or rolls her toes because she isn’t picking up her foot high enough. The neuropathy seems to be more present. She walks on her tiptoes more. She will be walking or sitting and say something hurts or she is uncomfortable. She was playing with her dolls last night and started telling me all about one of her doll’s cancer slugs. How they make the doll's arms, hands, legs, feet, and sometimes face hurt. Her stomach hurts where the scar is. But it is going to be alright because we are fighting those yellow slugs and we are going to win. She lovingly tucked the doll in good night. E was the doll’s doctor.

With the frequent clinic visits and uncertainty over the past week regarding her bottom hurting, she is having flashbacks of when we went to the hospital the first time. She has asked a lot of questions about when they put the IV in her hand (which was extremely traumatic). Then, the other night, we heard a siren outside. She said she was scared of the siren. She thought the ambulance was coming to take her away from us because her bottom hurt. (The ambulance ride from Cone to Brenners was the only time we were separated when all of this started. They made me ride up front. Again, traumatic).

I am so thankful every day that Kevin saw the tumor, the optimistic diagnosis and the “mildness” of her treatment/side effects compared to most of the children we meet weekly at Brenners. At the same time, I am so frustrated and angry that this has happened to my family and my little girl and there is only so much we can do to make it better. Sometimes I just want to scream, instead I blog (and yes, I scream too).

Another "NOT happy!" visit

Today was a finger prick day. We wrapped her finger up with the numbing cream we put on her port hoping it would ease the process. E was pouting about going, but we got out the door okay. I was hoping this was a good sign. I was wrong! I had to carry her kicking and screaming into Pat's office for the finger prick. There was a 10-year-old little boy getting his finger pricked too. He let E watch. She kept her distance, but still peered around the corner to watch. He was very brave.

Then we waited for a check-in with the doctor about her pee issue. They still don't know what is going on and she is still saying it hurts when she pees. We are being referred to a urologist. Maybe it will clear itself up before we can get an appointment...

You wouldn't know from the pictures how unhappy she was today. (She told several people: "I am NOT happy today!) Such a ham for the camera.

Another round trip to brenners

E was complaining about her pee still burning, maybe more than before. And that area hurt even when she wasn't peeing. Plus her lower back right side (where her kidney is) hurt.

Back to brenners we went. Another urinalysis was negative. We are waiting on the culture (apparently the one from Monday was never done). She had her finger prick. Nurse Karen and I held her down.

Dr examined her and couldn't figure it out. We decided to do an ultrasound of her right kidney, bladder and area where the left kidney was. E was not happy about that. She screamed and cried the whole time. ("I want to go home!"). Poor baby.

The highlight was eating in the cafeteria again. Cheesy, saucy pizza an m&ms cookies for dessert! She loved it.

Back up to see the dr. Ultrasound showed everything was working like it is supposed to. We are continuing antibiotics. If it still isn't better by next week, next step is seeing a urologist.

Here's to hoping it is better asap. No more or new doctors!!! We are all so tired and totally over all of this...

Antibiotics, yum!

Evelyn is still complaining about burning when she pees. We called the doctor and the culture hasn't come back yet. He recommended starting her on antibiotics. If she isn't better in a few days then we are going to call and probably go back in to see him.

I know they can't know everything but it really bugs me when they don't know what is wrong and how to fix it. I feel like they are overlooking something important.

Anyway. E likes the taste of the medicine and asked for more. At least it won't be a chore to get her to take it. Hopefully it will do the trick...

A little burning

The biggest threat to Evelyn (other than the cancer coming back) is damage/infection to her one remaining kidney. So, last night when she started complaining of burning when she went to the bathroom, we became concerned. We called the doctor. She said as long as E didn't have a fever we could wait until the clinic opened to bring her in (instead of going to the ER that night). 

We called first thing this morning and the nurse advised we put the numbing cream on her port (Ariel) just in case they need to give her medicine. The spectrum of possibilities ranged from no infection, infection needing antibiotics, blood in the urine needing hospitalization. 

Once we were at the clinic, they checked her temperature, blood pressure, height and weight. She lost a pound over the weekend :(. Then she pee'd in a "hat." That was the highlight of her day. She thinks it is pretty funny. Then we waited. She told everyone that came in the room, "I am NOT happy today." Not even Nurse Karen could cheer her up. The doctors looked her over and then we waited and waited and waited. Thank goodness for fun books and the Arts for Life room. We were in there for what seemed like hours making Halloween crafts. Even daddy joined in on the fun. (Pictures below)

We ate lunch in the cafeteria. She was "so excited!" to be able to pick out her lunch. Who knew a cafeteria was so exciting? 

As we wrapped up lunch, the doctor called and told us the test results were negative. They are doing a culture that will come back in a few days. So far, it looks like it was just a fluke. 

Phew! We will always have to watch carefully for those types of infections. But I'll take waiting all day at the hospital for negative results any day over waiting and then having bad news come along with it.

Out of the woods?

E had a rough evening, slept through the night, had a rough early am, but seems to be okay now.

We are out of bed, watching Halloween specials, drinking "daddy juice" (Gatorade) and trying to eat. Usually these are the signs of her stomach settling down and the nausea passing. Fingers crossed!

She is such a trooper though. Every time she throws up she says, "that is NO FUN!" She is sooo right!