Giving Jesse her shot is pretty traumatic on a daily basis. But changing her dressing around her CVL is a 30 – 60 minute scream fest.

We normally start out by “painting ” her dressing tape with detach all. Yesterday I only had the crappy worthless pads from the home healthcare company. If they ever give you those, look at them and say are you nuts? The pads are obviously a way for them to cut costs. The detach all from the hospital is a vial that you break, and the solution gets where it needs to be. (TIP: Let is sit for 30 minutes if you can, makes it easier)

As you can image, since the pads didn’t work… it was awful. Her skin there is sensitive anyway.

After the tape change and cap change she was done. Jesse zonked at 5:30pm making me nervous. While I detest tape changes, cap changes make me down right paranoid. The caps are at the end of her CVL. That CVL is a line directly into one of her blood vessels close to her heart. If bacteria get into that line… not good. This is one of the reasons that if Jesse has a fever higher than 100.4 F, we have to go to CHKD on an emergency run. They have to get her on antibiotics and culture her caps to make sure the fever isn’t from an infection there.

Knock on wood she’s fine, save that she woke up from her 4.5 hour nap at 10pm and was up till 1am. But she was up and happy. That is all that matters 🙂

Her sister, Chris, on the other hand was out. She’s hilarious when she sleeps (she sleeps like her uncle Bert). All over the bed.

Poor Jesse… even with the anti nausea medicines she still gets sick. We went today to pick Chris up from school. Right now Jesse only wants to eat McDonald’s French Fries. I stopped and got her some to eat on the way. I noticed while we at the school that she was starting to behave as she does before she gets sick. I figured since she was misreable that I would give her some benedryl to help her feel better. The minute that hit her stomach it was over with 🙁

She was steadily telling me that she wasn’t going to get sick the entire time. But afterward she felt so much better, and ate 4 chicken nuggets. I know that she hates throwing up… but it seems to really improve things after she does.

Yesterday, we traveled to clinic for her checkup and to see if Red Fred the IV bag was going to keep hanging out with us. She does really well with Red Fred. She’ll drag him along. I heard her tell the bag to come on and keep up. And I even heard tell it once that they were coming to see me.

Our doctor decided to disconnect her Fred. Her first words were “Yeah I’m free!” Then she went out the door ( I didn’t realize it at the time) to find her nurse. Then she came running back in jumping up and down that she was free. Naming the bag Fred makes it easier for her to tolerate it, but she is smart. She knows that it’s not normal to have that attached to her.

All of her levels are great (or were great). Her ANC was 22,000… but this will be short lived. Her ANC will fall once the cisplatin really kicks in.

Earlier today, Jesse and I went to see big sis, Chris, perform in chapel for Walnut Hills Baptist Church Learning Center. I was hoping that Jesse would quietly site with me and let that time be about Chris… nope. Jesse had to sit with Chris. Chris’ teachers were wonderful and let her. Jesse even got in on one of the songs. She did do really staying on the bench for one song. She wants to be part of her sister’s class badly. Thank you to her teachers and the staff for letting her be a small part of the class.

I ended up having to take her out because she got noisy that I wasn’t going to let her roam between me and her sister.

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You can keep up with Jesse through Facebook! Please become a fan at Jesse Grace’s Journey

Also we need your help in fighting cancer! How? Please help with our St Baldrick’s event. You can donate from $1 on up. This money will be given to researchers looking for a cure for cancer.  I am raising money and shaving my head for this cause. You don’t have to, but if you want to we’d love to have you join us on stage April 7, 2011. If youd like to volunteer or have another way to be involved, please visit our event page for more information: Click Here!

Yeah we’re home! The doctors and nurses were wonderful and got us out by a little after 8:00am. I do love traveling back on the weekends (might be a different tune in the summer).

Jesse and I were back here by 9:30. She gave my one gagging scare on the way home.

Here she’s been dragging Red Fred around the house.. (he’s the pump and IV bag in a red backpack). After lunch she did crunch up like her belly hurt… We are trying to keep her on a continuous anti-nausea medicines so prevent her from going back to the point where she can’t stop throwing up. Luckily as of right now… no spew. *Fingers crossed*

After lunch her temperature was a little elevated. The home health nurse was using one of those head thermometers and swiping half way across her head. I do not care for the head ones because my girls have hot heads… so they always read warm. Under her arm it was 98.9… but her checks are cool and so are her legs. Usually when Jesse has a fever, her eyes dull, checks are red… and her legs are hot. I took her temp an hour later and it was 98.5.

Right now she is excitedly waiting for her big sister, Christine, to come home from hanging out with Uncle Bert, Aunt Raven, and Joel. She’s going to be surprised that Joel is coming to visit (Uncle Bert and Aunt Raven too, but you know kids… look there is one my size! Yeah!)

Today was Jesse’s last dose of cisplatin. After the 3 doses at regular strength and the 1 dose at 25%, her appetite is gone. And this afternoon as I picked her up to sit in my lap, I got a little surprise…. Thank goodness they have a washer and dryer here.

Her energy is reduced to. She did play a little, but she is more content to watch Scooby Doo or Dora on the ipad.

It’s currently 5:30pm and we’re laying in bed. The home health nurse will be here early in the morning to hook her up to her fluids to go home.

Last night she did not throw up from the sodium thiosulfate, in fact she didn’t even wake up! So I guess today’s surprise was a leftover from last night too… And she never complained about her stomach hurting today. She just didn’t want anything to eat. After she cleared her system, she has eaten a little. But she still isn’t interested in food.

This time when we go home they are going to give us the pill of Dexadron to help with the nausea. We didn’t have this in our pocket last time. I really hope this makes a difference.

Jesse’s hemoglobin was 7.3 yesterday. They decided that they would wait until today to transfuse her.

I figured that I would have this kid either needing to move into a trash can and changing her name to Oscar or hyped up like she’d been hanging with her Uncle Jim drinking coffee. I got neither.

In fact, she acts very normal. It’s currently 8:30pm and she is asleep… Last time we got blood she was up till 3 am. The other thing was that there was a lot of blood left in the bag after the 4 hours of transfusion. I hope that Fred didn’t fail us again like his cousin did with the chemo on the first night.

Jesse’s dose of sodium thiosulfate has been moved up an hour to 11:30pm. Last night she needed ativan and Benedryl to help her feel better. Today she has done well except she has not wanted anything to eat but the Lay’s Potato Chips in the Yellow Bag (the Yellow Chips as she calls them) and fried mozzarella sticks, which no one was making close by.

I don’t feel comfortable leaving her for too long when I am here alone. I know that the nurses will take great care of her, but she is my responsibility. Plus they have other children who need them… and a 2 year old with an IV pole requires a full time person.

I got her a new classic Scooby Doo today. We have watched the Ozark Witch 10 times! Oh well she’s happy and loves it.

Fred let us down last night 🙁 Jesse’s etoposide was infused with no trouble. Then after an hour her cisplatin dose was still mostly in the bag. The doctor, pharmacist, and nurse decided to stop the infusion. Too much would cause serious damage. They also started investigating last night where the problem was.

They figured out that for some reason only 25% of the cisplatin was infused. She needs the other 75%… so she will get that on Saturday. We will be staying an extra day to give her this amount. It’s too important to miss this dose. She will get to leave possibly 8 hours after getting the cisplatin. But I have a feeling that our wonderful home health care people will do something that will allow us to stay here until late afternoon… or she will need blood. Please let us go home after having blood if we have to have blood. Getting red cells is worse than giving her a caffeinated soda and pixie stick. Last time she was up till 3am.

I also spoke with our doctor about our next step. After this round, Jesse will have a CT-Scan to see if there is any tumor that can be removed. He told me that most surgeons aren’t going to touch it because of the danger removing it will put her in. The tumor encases too many blood vessels that if cut… can’t be repaired.

Right now her quality of life is good.. She handles the chemo so well. I don’t know what radiation or the 5 anitbody treatments will be like. He did tell me that the antibody treatments will be worse than chemo.

Jesse has wanted to eat every 5 minutes today, and stayed awake until 6:50pm (missed her dad by 10 minutes…) She played really well… made it a little hard for me to get my work done. Figured I’d work on that now since we have the sodium thiosulfate at 12:30am. Why go to sleep when I’m going to be up in 2 hours? She did throw up from this drug last night. I’m expecting the same tonight… maybe this time I’ll be a little more on the draw, and it’ll all be in the bucket. Corn dogs regurgitated… that one got to me. The nurse threw away her bucket because the greasiness was still there after cleaning it out. Makes me rethink corn dogs… not Jesse she wanted more this morning…

Jesse and I arrived at CHKD for round 5 this morning. I tried going through the Downtown tunnel because we were running really early. Never again. Interesting tunnel, but took longer and traffic wow!

In clinic they had her hooked to Fred the IV Pole by 10am. This is a great thing because we can start chemo earlier than 7pm! This round we get etoposide and cisplatin. They will be constantly taking her blood pressure for the etoposide to monitor for heart trouble. The cisplatin will be fine going in… then a week later will rear it’s ugly head.

Jesse is also getting sodium thiosulfate. This drug will be given 6 hours after the chemo. The doctors are currently studying it on patients to see if it will protect hearing. Cisplatin has the potential to cause some hearing damage.

Then in 10 hours approximately rinse and repeat for 4 days. We will remain an additional 24 hours once chemo is completed to hydrate her as much as possible due to the cisplatin. I can’t remember if the etoposide is only given for 3 days… guess I’ll get a memory jog shortly 🙂

Jesse’s attitude today is not the best. Everything is setting her off in crying fits. I have put her in timeout twice. She is starving, but wants none of what I have to feed her. Basically she acts like she has been here for 5 days already. We’re going to have a long visit I feel…

I like going in to CHKD that early. We were there by 6am 🙂

Jesse is getting used to sedation. She played with the toys and walked around talking to the nurses until it was time for her to go to sleep. I put Scooby Doo on the ipod for her to watch. She fought going to sleep quietly… and was out in no time.

I had to laugh while we were waiting. Jesse was talking to me. One of the sedation nurses stuck her head in the door, quizzically looked at us, and asked she’s here for an audiogram? I explained that because of cisplatin, her doctor wants to keep a close eye on her ears.

The great news is that the study drug is working! The cisplatin didn’t damage her hearing this time! Yes! The Audiologist (is that a word?) was pleased with the test 🙂

I know that it sounds strange to sedate a person for a hearing test. I asked them how the test worked. They place earphones in her ears, and test how her brain waves measure in accordance to sound.

Tomorrow Jesse and I will leave here to travel to CHKD for her audiology test. Because of her age they will put her to sleep… I don’t know how it works being asleep.

Registration by 6:45am. Test is at 8 am and will last 45 to 90 minutes.  After she is able to eat and drink, we’ll head home. They are telling me to expect 4 hours… I’m going to go with 6.

No solids after 10:30pm and nothing at all after 4:30am.

We’ll leave here at about 5am… so she should sleep the entire ride and not realize she is hungry. Yeah!

Up early to head to clinic. Christine got to spend the night with her Ferfer.

Jesse and I were out the door by 6:30am. Midtown tunnel was backed up off the bridge. I know it’s petty, but there is this woman that is always cutting the line. Every time I hit the tunnel at a certain time, she is cutting in line.  Why can’t she be polite?

Parked in the garage at 7:55am  (sat in line for the Midtown Tunnel for 20 minutes). We were in clinic by 8am.

Jesse’s labs were back in about 30 minutes (they are pretty quick). Her ANC is 14,058 (Normal Range is 1,500 to 8,000) They asked me if I had been giving her extra filgratsin in her shot. Nope… last time we double it, her ANC hit 86,000. I don’t see a reason to repeat that!

Luckily an ANC this high means no shot for Jesse. She’s thrilled. So am I. It’s not my favorite thing to hear, “Mommy don’t hurt me.”

We get to head out of clinic at 10am.

We are currently waiting for audiology to schedule her hearing test for this week. On Tuesday, she will be admitted for round 5… with cisplatin… aka cispukin…

On the ride home… Jesse pukes. She gets to ride the rest of the way home in Christine’s car seat.  I could have put her back in her seat, but with everything going on… making her sit in puke just seems insulting.