Back at NYU - Chemo Cycle 3 Begins

Well after an awesome week at home, we brought Isabella back to the hospital to begin her third cycle of chemotherapy. The worst part of today was that they had to reaccess her port, but it wasn't nearly as bad as in the past because we put some numbing cream over the area an hour before they accessed (they access the port with a 3/4 inch needle through her skin and into the port that was implanted in her chest). Honestly, the worst part is Isabella's anxiety because she remembered the past accesses. She cried and cried up until they accessed her, but once they poked through, she was fine and smiling!

Our weeks of practicing swallowing pills also paid off because she took the temodar pills with no problems! Her dose changed from 2 to 3 pills, but she was still able to take them with no problems. The nurses were so impressed with Isabella because the last two cycles, she made such a fuss with the temodar it could take a couple of hours to get her to take the pills. This time, it took her about a minute to do all 3 and she did it during a commercial break of Charlie Brown Valentine.

We will probably be back home on Monday. We will give Isabella the rest of the temodar at home (day 3, 4, and 5), while we will come in to Hassenfeld Children's Clinic in New York on day 7 and day 14 for the vincristine. You can keep track of Isabella's treatment schedule with the link over to the left or by clicking here.

Back to School

Today, we took Isabella to visit her kindergarten class at Marvin school. She was extremely excited to see her old friends that she couldn't stop smiling all morning. We had been planning this for a few days, because we knew that she would be continuing her chemo on Saturday so she probably wouldn't feel any better than she would on Friday. Plus, the school had planned some special parties because it would be the 100th day of school and they would celebrate Valentine's Day. We also knew that based on her chemo schedule, this would probably be Isabella's last chance to visit school for this school year before the summer.

Julianne already spoke to Isabella's teacher, Mrs. Stelly to coordinate the day. Mrs. Stelly would speak to the class and just let them know that Isabella was coming and not to get overly excited. She warned them that Isabella would have no hair, but most of them had already seen pictures of Isabella on this web site. Also, most importantly, she told them that what Isabella had was not contagious so they shouldn't worry about "getting cancer". But at the same time, we had to worry about a sick kid passing along a sickness, so we would be prepared with masks in case someone was sick.

We planned on bringing Isabella to school a little late, around 10 AM so that the kids could get settled in and there wouldn't be so much commotion. When we got to the school, Isabella started to get a little nervous. When she walked into the classroom, all the kids got excited to see her and one boy immediately shouted out, "She's got no hair!" (Luckily, Isabella is not self-conscious at all about her head!) Then, she fell right into line with the routine of the class. She walked over to the attendance board and placed her picture from the "At Home" section to the "At School" section. Then she ate some of the snacks they had to celebrate the 100th school day. After snacks, the teacher read them a book for story time.

We weren't sure how long we were going to let Isabella stay at school. If she got too tired or overwhelmed, we would take her right home. But after a while, it was evident that Isabella was having no issues at all and we decided to go home. We would come back for the Valentine's Day party right before the end of school.

Right before we left, we heard the kids ask if they were going to wear the masks. We decided they didn't have to since no one was really coughing. Some of the boys were actually disappointed at not having to wear the masks and one of them said, "Awww. I wanted to look like Darth Vader!"

Isabella spent the rest of the day at school and had a great day. She brought home a ton of gifts and candy for Valentine's day. She even lost a second tooth while at school, which she brought home to be rewarded by the Tooth Fairy. This was the perfect way to end our vacation!

Our 100th Post

This post marks the 100th post on Isabella's Fight.  I was contemplating what I could write about to make this any more special or significant, and ironically, the post will not be about Isabella, but about Julianne.

Very few of you actually see what goes on on a day-to-day basis, and although we try to paint a picture for you on this blog, it really doesn't capture everything.  One of the aspects that you don't see is how Julianne is dealing with the whole situation on a daily basis, and I know I won’t even come close to being able to describe everything that she’s done.  Yes, she had a couple of blog entries where she let loose emotionally, but not many of you have experienced her incredible strength first-hand like I have.  From that first night almost 3 months ago when we first found the tumor in Isabella's head, her fight-or-flight instinct switched over to fight mode and she broke off the switch.  I often tell Julianne that if I was dealing with Isabella by myself, she'd be dead because I just would not have known what to do during those first critical hours.  But Julianne was there, getting in the doctors and nurses faces, making sure that everything  that was being done was the right thing.  She had contacts in the medical field who suggested what we should do and where we should go.  And when we realized that Bridgeport wasn't the right place for us to be, there was no hesitation to get Isabella to where we needed to be.

When Julianne is at the hospital, she spends every minute tending to Isabella, making sure she's eating and drinking and getting the proper medications.  But once Isabella goes to sleep, Julianne jumps on the Internet to find articles and stories with the hope of finding something, anything that can cure Isabella.  She'll post questions on the support group forums or send e-mails to authors of articles requesting more information about a particular treatment they tried.  She'll contact the families of other survivors and get more information from them hoping to find something useful.  Once she finds some information, she'll pass them by Isabella's oncologist to get her opinion.  She won't get to sleep until 2-3am, then be up with Isabella first thing in the morning to continue caring for her. 

Unfortunately, Julianne's medical training can also be a curse.  She knows the statistics for pediatric brain cancers and their likely outcomes.  She didn't want to take a look at the initial MRIs because it would be too horrific - I looked at them and was happy I could make out the brain area.  She knows what the effects of such and such a medication are or the potential side effects of radiation.  She knows the risks of stem cell rescue and bone marrow extraction.  She knows what doctors mean when they say things in a particular way.  She's seen patients die.

And therein lies Julianne's biggest challenge.  Because in a way, Isabella is her most important patient ever, but first and foremost, Isabella is her child.  On a daily basis, she struggles with being a doctor and being a mother, and she does it amazingly well.  Yes, this blog is about Isabella and her fight against brain cancer, but it certainly wouldn't be complete without mentioning Julianne's complete and selfless dedication as she stands and fights right alongside her daughter.

Timing is Everything

I think we picked the absolutely most perfect week to be home with Isabella. Here in Connecticut, we are enjoying above average temperatures, mainly in the 50s all week and touching the 60s today. We've been able to take walks outside and go to the park and play at the playgrounds. Isabella has been riding on everything from the slides to the swings and even the monkey bars. Today, she even played a little soccer in our backyard. A couple weeks ago, she wasn't able to throw a ball because she wasn't able to open her hand quick enough to release the ball. But we've been having catches over the last few days and she's been throwing with little problems. Of course when it gets dark and cold outside, we settle in with our "music therapy", otherwise known as "Rock Band"!

We go back to the hospital on Saturday to continue with her chemotherapy, and the temperatures will again dip towards the freezing mark. We are hopeful that we are done with the long stays at the hospital and hope to be back home by next weekend.

Midweek Update

This is just a quick update.  Isabella has been home all week and I’ve been working from home as well so we’ve been spending a lot of time together.  The controlled chaos that Julianne wrote about earlier is back and it didn’t take long for someone to start crying about something.  Here are some quick pics from the week.

Nathaniel never likes sleeping in his crib.  For the first night, we wanted to keep Isabella in our room to be closer so we had her sleep in his crib.  Well once we put her in the crib, Nathaniel immediately got jealous and was insisting to go into the crib too!