Sunday, June 27, 2010

Jenelle eating a cup cake

One of Jenelle's new goals in school is to start using her hands to feed herself. At school, they are using Cheese-it Crackers and having some success. On Father's Day, I made some lemon cup cakes and decided to let Jenelle try to eat one on her own while I frosted them. Jack tried to get involved as well. Enjoy!

Friday, June 18, 2010

Summer Begins...

Jack finished the last day of 3rd grade on Wednesday, so Summer has official begun at the Curran house. To celebrate, I thought I'd share some photos. First, here are some photos from the girl's slumber party at UCLA:

First we have Jenelle with her "Princess Hat" that helped to keep her from pulling out the EEG connectors that were glued to her head. That hat lasted all of an hour before she pulled it off (at least the probes stayed put!)

Here is a photo of our room - can you see Pauley Pavillion out the window in the background? In the foreground, you can see the EEG monitor. The waves are chaotic because Jenelle was wiggly, not because she was seizing.

Here is Jenelle the next morning - just starting to get irritated with the whole thing.

And you may think this is an odd photo, but I just had to share. This is the gurney in the ER. Now, if there are any "Grey's Anatomy" fans out there, you may notice that in the show, patients often have pink or navy or peach colored sheets. For those of us who are "frequent fliers" in hospitals, we know this is a bunch of hog wash. Hospitals use white sheets so they can bleach the heck out of them!
This photo below is of the gurney in the ER at UCLA. I immediately noticed that is was a soft cotton jersey like material, and definitely not white. I made a comment to our nurse, and he told me it was something "new" they were trying. They had hoped that the softness of the sheets, and the color would be soothing to patients. I must say, it looked comfy, and definitely "soothing!"

Jack's last assignment for 3rd grade was an oral report on a sports figure that is no longer playing their sport. No, Jack has not converted to being a Red Sox fan, but he did do an oral report on Ted Williams, the Greatest Hitter ever. Here is Jack working on his poster of Ted Williams.

The night before Jack's last day of school, he and Daddy got into a "tickle fight" which lead into a dog pile. Jenelle enjoyed their laughter so much, she decided to get in on the fun. So Jack and Daddy in turn dog piled on Jenelle. As you can see, she loved every minute of it!

Finally, tomorrow is the first game for the Little League 9 and 10 year old All Star Tournament. Jack (who goes by the nick name "JD" in baseball) was voted onto the All Star team by the coaches. We are very proud of him. I had to decorate the car to show off our pride!

Go Tustin Eastern Little League!
That is all for now. Happy Father's Day - enjoy the beautiful weekend ahead!

Sunday, June 13, 2010

Home without answers

Jenelle and I left UCLA on Wednesday afternoon with few answers from her EEG. Dr. Shields wants to review all 24 hours and see us in 4 weeks. In the meantime, no change in medications. From the preliminary report, Dr. Shields feels that Jenelle is not having spasms, so that is good news. Why she has had an increase in seizures, we still don't know.

I started ATRA (Vitamin A, my third chemo med) on Thursday and I've been really tired. Watching Jenelle in the hospital for two days didn't help. Thankfully, Brett has let me sleep in all weekend. It was very challenging trying to keep Jenelle in a hospital bed for two days. She fell out three times; once I caught her, and the other two times she fell to the floor. She wasn't hurt, but a little startled. I'm glad to be home.

That is all for now. I will keep you posted. Thank you for sending those seizure vibes. Whether or not it worked, we have yet to know.

Tuesday, June 08, 2010

The other side

In 7 years, I've really learned a lot about reading an EEG. The waves on the screen look like seismic quakes. I can tell when she seizes, and when the waves are normal. Some of the large waves look like seizures, but they are normal - usually because she is moving. But right now, she is in a deep sleep, and the waves are everywhere on the screen. It makes me wonder, has she been having seizures in her sleep without us knowing? Another question for Dr. Shields in the morning.

This is a strange experience for me, being on the other side of the hospital bed. The care giver and not the patient. I know this hospital so well. I lived here for a month of my life. I'm not used to this side of the bed. I went down a bit ago after Jenelle fell into a deep sleep to get something at the dinning commons. When I came back in, I had to show ID. I didn't realize you had to do that, I guess because I was always a patient. My food came from room service, and I didn't parade in the lobby after 9:00 p.m.

A year ago, I was dying at the hospital in Santa Monica. I've amused myself looking at the calendar of late, because I barely remember anything this time last year. Looking back at the blog entries helps. Jenelle's room is set up exactly the same as the one where I spent one of the worst month of my life. Not remembering that time is unavoidable. Yet, I remind myself that I am fine now. I survived, so I could continue to be a caregiver to Jenelle. So I could sit on the other side of the bed with her.

Brett had to stay home with Jack today. Jack was voted onto the 9 & 10 Year old All Star Team, and Brett is helping to coach. Jack has school and they have practice. Brett would love Jenelle's room - it overlooks Pauley Pavilion, and the football practice field. My room was on the other side. Brett always wanted me to ask to be moved.

Thank you for the continued thoughts, seizure vibes and prayers. I'm exhausted, but I'll keep you posted.

Finally in a room

Start sending those seizure vibes!

We finally got a room around 5:00. Dr. Shields came to see us in the ER, and had the EEG technician put the electrodes on Jenelle while in the ER so we didn't waste any time once we got a room. Unfortunately, just as the tech finished putting on the EEG electrodes, Jenelle had a huge tonic seizure requiring oxygen (I think from the stress of being forced to stay still - I was lying on top of her while they put in the electrodes.) It was unfortunate, because she wasn't hooked up to the EEG yet.

We are now in our room waiting for dinner to arrive (Mac N Cheese for Jenelle - I'll fend for myself later tonight when she's asleep.) Jenelle has had a seizure since we got up to her room (and while hooked onto the EEG), so that's a good thing. Hopefully we'll get some answers.

I'll keep you posted.

And, we wait...

When we arrived at UCLA Mattel Children's around 11:00 this morning, admissions wanted to turn us away because they didn't have beds. While in the admissions waiting room, Jenelle's neurologist called me on my cell phone and told me to go to the ER to get admitted from there. Dr. Shields wants to get her EEG ASAP, and wanted them to know this wasn't an elective admission.

So, right now we are sitting in the ER waiting for a bed. I feel horrible, like we're using valuable resources just to get admitted, but at least the ER is not busy right now.

Justify Full
The only good thing (if you can call it that) is that since we arrived in the ER, Jenelle has had 8 seizures, the longest going 4 minutes (in the last hour). I just hope she keeps having them for the EEG, if we get admitted.

So, for right now, send seizure vibes, but send "get a bed" vibes first! ;) I'll keep you posted.

Off to UCLA for a girls slumber party!

Jenelle and I are on our way to UCLA for her 24 hour video EEG. Please send lots of seizure vibes for Jenelle (yes, we want her to have seizures during the EEG) so she can give the doctors lots of information. I'll post more when we get there!

Sunday, June 06, 2010

Cancer Survivor's Day @ Team in Training/San Diego

The first Sunday of June is National Cancer Survivor's Day. I consider today my first (and not last) celebration of this day, because a year ago to this day, even though I was cancer free, I almost died from neutropenic fever. In honor of this special day, I made the trip to San Diego with Jenelle and Brett's Aunt Nicki to cheer on Brett's cousin Bridget as she ran the San Diego Rock N Roll Marathon with Team in Training. Even as a spectator, it was such an inspirational event!

I made a sign with "Go Bridget" on one side and "KCA" on the other. We arrived around 9:00 a.m. at the 16 mile mark and started cheering on the runners. It was so amazing. Many loved our "KCA" sign, and sometimes I would yell "Thank you from a Survivor" and I would get applause. It was awesome. Bridget had no idea that we were going to cheer her on, and was surprised and excited to see us with our huge sign! We thought if she saw us at the 16 mile mark, she'd be willing to go the last 10!

After seeing Bridget pass the 16 mile mark, we took our time to get some lunch, and then park at Qualcomm Stadium to take the Trolley to Sea World for the finish line. Our timing was perfect, and we arrived about 20 minutes before Bridget came across the finish line. After we went to the Team in Training tent and again I was really inspired to see all the participants. I've always thought a marathon was out of my reach, but if Bridget can do it, if I can beat cancer.... well, maybe someday, and definitely with Team in Training!

Jenelle enjoyed the day as well, but had a few seizures today. Speaking of which, we are scheduled for her 24 hour video EEG for this Tuesday at UCLA. I'm waiting for confirmation, but am pretty sure things are still a go. I'm glad we got in soon, because I'd like to get an answer one way or another about her seizures.

I will update later on Jenelle when I have more information. Here are some photos for you to enjoy!

Jenelle and Nicki at the 16 mile mark waiting for Bridget.

"Kick Cancer's Ass"

"Bridget surprised to see us!"

"Bridget crossing the finish line!"

Go Team! KCA!