End of a Loooong Day

It's well past 1am now, and thankfully, Isabella is resting comfortably in her hospital bed now. But the start of the day, and the past couple days had been much more stressful. It all started on Monday when we got a call from her school that she complained of a headache. We thought it was odd, but we noticed no other symptoms. But on Tuesday, she was only able to manage to get single words out instead of full sentences. On Wednesday, she couldn't speak at all, and cried constantly at the frustration of not being able to communicate. She also didn't eat dinner, then threw up during the evening. We contacted Isabella's oncologist who said she would schedule an MRI for Friday, then we would start some chemo treatment shortly thereafter. This made us feel a bit better since at least we were going to be doing something.

I stayed home from work on Thursday because we had a meeting at Isabella's school in the late morning to go over some special therapies she needs. Isabella did not have a good sleep Wednesday night, and because she was feeling pretty cruddy, we thought we'd keep her home on Thursday. Since Isabella couldn't speak, we installed an app on the iPad that allowed her to point to pictures and words to allow her to communicate with us. One of Isabella's other symptoms is that in addition to not being able to speak, she was having difficulty eating. We were extremely worried that Isabella would get even weaker if she didn't or couldn't eat anything. So, in the morning, we decided that after our meeting at the school, we'd take Isabella in to the children's clinic in NYC, where she could get some fluids and figure out what to do about her eating. One of the options is to give her a feeding tube, which is a tube that goes up her nose and down to her stomach through which nutritional supplements would be fed. It doesn't look pretty, but it's an option we'd consider once we met with our oncologist.

But during the course of the morning, Isabella seemed to grow worse. She would constantly cry and complained about her head hurting, which made us worry even more. We decided to cancel the meeting with the school and headed right into New York to have her looked at. We hoped that getting some fluids in her might make her feel better. On our way in, our doctor called us and said that she arranged to have an emergency MRI ASAP, so we drove right to the MRI at NYU. We would go meet with our doctor at the clinic afterwards. This got me anxious right away because I knew that one way or another, we were going to find out what was going on. While we were sitting in the waiting area, Isabella would slip between sleeping and waking up complaining of a headache. I had horrible flashbacks to that night almost 3 years ago when we had the MRI in the same location and sitting in the same seats where a surgeon sat next to us and said he had to remove a 10cm tumor from Isabella's head. Julianne accompanied Isabella into the MRI as I stayed back in the waiting area. When they finally came out, I nervously asked Julianne, "Is that it? Can we go to the clinic?". "Yes," she replied and smiled because she was thinking the same thing as me. If they had seen something drastically wrong, they would have kept us there to discuss a possible surgery or at least be admitted to the hospital. But they let us go and we walked the few blocks to the clinic.

We finally got to the clinic around 2:30 or 3:00. They immediately got us into a treatment bed where they gave Isabella some fluids and Tylenol to help relieve her headache. They were ready to give some morphine if necessary but we were going to see if the Tylenol was enough. At some point, our doctor came in and asked us if we wanted to look at the scans. I immediately didn't get a good feeling, since the last time we had an emergency scan in June, the first thing she said when she saw us was that everything looked stable. Today, she definitely had a more urgent feel. When we went into the room, Isabella's scans were up on the monitor, and one by one, she went through and compared today's slides with June's slides and pointed all the areas of tumor that were noticeably larger. She showed us areas where there appeared to be intracranial bleeding that was being caused by the tumor taking over critical blood vessels. She showed us where the midline of the brain was shifting due to pressure caused by the bleeding. It was this pressure and shifting that was causing Isabella's headaches and preventing her from being able to speak properly.

As she went through each slide, I felt a giant wave of nausea overcome me as I broke into a cold sweat. For a while, I was suddenly a hundred miles away, looking in, as Julianne burst into tears as she asked some questions. How could this be? Isabella was doing so well. Just on Saturday, she took a swim lesson which she proclaimed was "awesome!". I closed my eyes and rubbed my head as I felt my own head start throbbing. We were wondering what our options were and how much time was left? Julianne called her parents to relay the grim news and they immediately started their five hour drive from Vermont. I called Annalise who was just getting out of school to tell her the news, as well as my mother and brother. We began talking about last rites, Hospice care, and funeral arrangements - all things we were hoping not to discuss for a long time. Our doctor had spoken to the neurosurgeon who first operated on Isabella and he felt that she was not a candidate for surgery. That was greatly disappointing to us because this neurosurgeon is one of the best and most aggressive in the world, and if he didn't want a piece of this, then no one would. But although surgery was off the table, not all other treatments (such as chemotherapy) were. But still, we wondered what was next?

Our doctor simplified everything by telling us that we needed to get Isabella stable and comfortable. In addition to the fluids and tylenol, they gave Isabella some steroids, which are used to reduce the swelling and pressure in her brain. It seemed to help a little because Isabella was able to sleep for a little while without waking up because of a headache. We would need to be admitted to the main hospital at NYU so that they could give her steroids at regular intervals for a least a couple days and observe her. We would worry about the tumor afterwards.

We finally got settled into our hospital room around 5:30 or 6:00. What was really nice, but really unsettling was how urgently the nurses were treating us. They're normally really great and responsive when we came in for chemo cycles, but today, they were super attentive and responsive. It's like they knew things were serious this time. We were also originally put into a double room with a roommate, but as soon as a single freed up, they moved us right over. Again, it's nice to get the special attention, but at the same time, it's kinda scary, knowing that they must have seen our situation dozens of times before.

Isabella slept for a couple hours and woke up around 8:30. She said, "I have to go to the bathroom." Julianne and I looked at each other in shock because this was her first complete sentence in a couple days. "OK!" we said and whisked her off to the bathroom. At another point, she walked on her own from the bathroom to her bed, which was another remarkable sign that perhaps the steroids were working to relieve some pressure. Although her appetite is not back yet, she did manage to gobble down two potato chips, which was the first things she ate in over 24 hours. We do expect her appetite to increase since one of the side effects of steroids is an increased appetite.

Finally, I do want to mention the tremendous support that we've gotten not just on this occasion, but over the past three years. Within minutes of my last post, Facebook immediately started hopping with prayers for Isabella requests. I know it may be just a simple gesture, but it does mean a lot to our family. We're still not out of the woods just yet, and even if the steroids do their thing, we still have to contend with controlling the bleeding and the tumor growth.

So when I first started writing this post, it was a little after 1am. It is now after 3 am, and as I mentioned, Isabella is resting comfortably. I thank you for allowing me to share our day with you.

Worst Update Yet

Today, an MRI of Isabella showed the tumor is bleeding in her brain. On top of that the tumor has grown and together this is causing severe pressure on her brain. This pressure manifested itself over the last couple of days with Isabella having headaches and losing the ability to speak. We are currently back in the hospital (NYU Medical Center) where they are administering steroids to try to relieve the pressure. At this point, they are just trying to make her comfortable and watching her to see how she reacts to the steroids.

Right now, we have no idea if and when we'll be able to take Isabella home. This has hit Julianne and me pretty hard, since it came on all of a sudden over the last couple days. They haven't pulled all treatments off the table yet, but we think we're getting pretty close to that point. We are making plans for last rites. We are also limiting visitors, so please don't feel slighted if you can't visit. We're trying to do what's best for Isabella.

Not an Easy Update

It's been over a month since my last post. Since my last post, a lot has gone on, including Isabella's first day of school. She's now in third grade. We also went through another Childhood Cancer Awareness month, with just about as little publicity as previous years, aside from maybe a couple more commercials. I wish I could say that my lack of posting was just a metaphorical representation of the sad state of pediatric cancer awareness, but it wasn't. I wanted to post some stuff, but just couldn't bring myself to it.

We have not gone through any more treatments with Isabella. After the last round of high dose chemotherapy two months ago, she took a bit longer for her counts to recover. Because she had not shown any noticeable improvements, we decided that we needed a change in strategy. At that point, the risk/reward factor for the chemotherapy was just not worth it, since the chemo could end up killing her.

We met with our oncologist at NYU and with the head of pediatric oncology at Tufts (who was formerly the head of pediatric neuro oncology at MD Anderson) to try and develop some alternate plans. These plans involved using different drugs and different dosages. For instance, instead of doing a high dose of chemo every 4-6 weeks, do lower doses constantly. These strategies are mainly used for low grade tumors, which have different characteristics than high grade tumors, which Isabella has. But at this point, there aren't a heck of a lot of options.

To make matters worse, Isabella's symptoms have grown sharply worse over the course of the last few days. Physically she is weaker and her speech is limited to just a couple words at a time now. I am anxious to start any treatment, but I am absolutely petrified to have another MRI done at this point for fear of seeing a dramatic progression of the tumor. Now Isabella has done this a couple times over the past year or so where she shows weakness but then gets better, but I don't know - I just don't have a good feeling about this.

I do know that many people out there continue to pray for us and keep us in their thoughts. We certainly do appreciate that fact as we continue this extremely stressful ordeal.

Another Way to Help

As I’ve mentioned many times on this blog, Isabella frequently receives blood and platelet transfusions to help her recover after a round of chemotherapy.  This blood is only available because people are generous enough to donate blood, and Isabella along with thousands of others around the country would be in trouble if there wasn’t enough blood.

Unfortunately, due to Hurricane Irene, many scheduled blood drives were cancelled resulting in a huge shortage of blood around the country.  The American Red Cross is requested anyone who is able to head to their local blood center.

To find a local center, visit this web site:

http://www.redcrossblood.org/make-donation

Here is a short video from the Red Cross describing the situation:

Happy Birthday to Another Super Sib!

A couple years ago, we introduced you to one of the charities dedicated to pediatric cancers called Super Sibs when we wished Annalise a happy birthday.

Today, Isabella’s little brother, Nathaniel celebrates his 4th birthday.  Although he can be a pest sometimes, he loves his sisters.  I think the  best thing he does is he treats Isabella just like a normal kid – he’ll play with her, tease her, and pick on her, just like any little brother.

What is really sweet is that Isabella wanted to buy Nathaniel a birthday present with money that she got for her own birthday!  That is just one other way Isabella amazes us.

Here is Nathaniel with his brand new Super Sibs trophy and Toys R Us birthday balloon.

Nathaniel opens his gift with Isabella and Annalise.

Happy 8th Birthday Isabella!–UPDATED!

***Updated with today’s picture below!***

Happy Birthday, dear Isabella!  I’ve drafted maybe a dozen different things for this blog post, and none of them felt right.  Instead, I thought I’d post a collage of pictures of Isabella that chronicles her birthdays through the years.  She’s had an incredible 8 years so far on this earth and here’s hoping for many more.

Day 1! August 10, 2003

1st Birthday

2nd Birthday

3rd Birthday

4th Birthday.  I’ve almost forgotten how cute she was with her pigtails!

5th Birthday.  Three months later, Isabella would be sent to NYU to have a tumor removed from her head.

6th Birthday.  Isabella was going through radiation treatments during her birthday.

7th Birthday.  We were at Camp Sunshine during her 7th birthday, and the entire camp sang her happy birthday!

8th Birthday

Back Home

Isabella is now back home after a relatively uneventful week of chemotherapy.  She felt fine all week, but just today started feeling a little rotten, so we’ll probably take it easy the next few days.  We’re hoping that she’ll feel better for her birthday which is coming up next week!

Another Round of Chemo

On Monday morning, we’ll head back into the City to start another round of chemo.  This will be the same as the last few rounds, which Isabella has tolerated fairly well.  There will be four days of chemo, then hopefully, we’ll be home on Friday in time to enjoy the weekend.  In the meantime, enjoy some of these recent pics from our summer!

A Difficult Year in Review

One year ago, our family was going along our merry way.  Isabella had finished her initial treatments and we had a couple clean MRI scans under our belt.  We were enjoying the summer and everything had just about gone to being normal.  Not the “old” normal from before Isabella’s diagnosis, but the “new” normal, which included nutritional supplements, periodic MRIs, and frequent occupational and physical therapy.

Physically, Isabella was just about back to normal.  Her hair had grown back to a nice thick curly nest and her scar from surgery was buried from sight.  Isabella just finished first grade and a psych evaluation put her right on target for her age, an amazing feat considering how much of her brain is gone and how much school time she missed.

But in the back of the minds of all cancer patient’s parents is the thought of recurrence.  Did she just trip on something from being clumsy or was it something worse?  Did she just jumble words from being tired?  Is that smile a little more crooked than yesterday?

On July 23 last year, we received the worrisome news that a routine MRI scan saw some suspicious spots appear in Isabella’s head.  For the next several weeks, we would go back and forth on whether this was actual tumor or perhaps necrosis (dead cells) caused by radiation.  We made several trips to Philadelphia, Boston, and DC to speak with other doctors to get second and third opinions.

And while we waited, we began to see signs of physical deterioration.  At first, Isabella began having trouble walking as she was no longer able to lift her right foot completely.  Then, her right hand and arm started getting weaker and weaker until it ended up hanging useless at her side.  Then she began speaking funny and drooling more, showing more evidence of neurological issues.

Follow up MRIs not only showed that the spot was growing, but there were new spots that moved to the other side of her head.  The evidence pointed to tumor and the hope of curing a recurrent tumor is infinitesimally small.  We were both physically and emotionally exhausted.  With every event, we thought, would this be her last?  Was this her last birthday, Halloween, Christmas?

Finally, five months after we found the spot, we began multiple rounds of chemotherapy.  We were no longer under any clinical protocols, but we would now basically throw anything at the wall and see what sticks.  We started off with a low dose mixture, but that didn’t seem to have much effect, so we moved to a high dose concoction.  The high dose chemo requires a week long stay at the hospital and would cause nausea and low blood counts.  With low white counts, Isabella would suffer several fevers, which required us to spend another week at the hospital to get treated with antibiotics.  It also made Isabella’s hair fall out again – her beautiful curls giving way to reveal the ugly scar.

But somewhere along the way, Isabella’s symptoms stabilized.  It’s not that they got any better, but they stopped declining at such a rapid pace that had us wondering whether she would live to see Christmas.  Two chemo cycles went by and it was time for another MRI.  Few people can relate to the “scanxiety” that parents feel on the days leading up to an MRI scan, but ours was in full gear.  Thankfully, the scans showed the tumor was stable, so we decided to continue with the chemo.

A person can’t handle too many rounds of this high dose chemo.  At some point, the body will not be able to recover from the poison being injected into the body that not only kills tumor cells, but a lot of other important components, such as the bone marrow that creates the blood components.  Also, at some point, the remaining tumor cells will become resistant to the chemo and either another mixture of drugs will need to be tried or the tumor will continue to grow.

So that brings us to today.

Isabella has a very difficult time walking now because of her severely weakened right foot and leg.  Think of a zombie or a mummy walking, dragging one leg behind them as the other leg walked forward.  We finally ended up getting her a brace for her foot, which has actually helped her walk much better, but her balance is still compromised.  Still, it was a pretty dramatic thing to watch a girl who was running, and hula-hooping, and cha-cha-sliding not be able to walk normally after just a few weeks.

The same goes for Isabella’s right hand and arm.  Although she became a full-fledged lefty after her surgery, she had regained almost all the strength in her right limbs as she was able to do the monkey bars and swing a bat and even swim without a floatie.  But now, her right arm and hand are just about useless.  We work with  her on a daily basis to do exercises and we’ve seen some encouraging signs of strengthening in her arms and legs, but she still needs plenty of assistance with basic tasks such as getting dressed and going to the bathroom.

What’s even more distressing is her decreasing cognitive and verbal skills.  As I mentioned before, a year ago, she was right on track schoolwise, but as the tumor grew, Isabella found it more difficult to concentrate and to form sentences.  We always knew that one of the long term side effects of radiation is decreased cognitive ability, but it hasn’t been easy watching a very bright girl not be able to do simple math anymore.

You’ve heard how some people live paycheck-to-paycheck.  Well, for the last year, we’ve been living cycle-to-cycle.  Everything starts with the first day of chemo when we check into the hospital.  We stay in the hospital for a week as the chemo is administered, then we go home.  For the next couple weeks, Isabella then gets her blood drawn several times to see what her platelet, red counts and white counts are.  In the meantime, she may get transfusions or neupogen shots to help her counts recover.  Once her counts recover, we then start another cycle.  The time for her counts to recover varies from cycle to cycle, which makes any sort of long-term planning impossible.  We can’t plan vacations more than two weeks away, or even simply RSVP to a party because we don’t know where we’ll be in the cycle.

Isabella’s most recent blood work shows her blood counts are back to normal and her doctor is ready to start another round of chemo.  Our dilemma is do we keep doing chemo and for how long?  At some point, the chemo could be what ends up killing her.  But if it is seemingly keeping her stable, what choice do we have?  What other treatments are out there?

I haven’t really posted a lot because frankly, it is difficult to write about certain things.  There are good days and bad days.  I certainly don’t feel like writing on the bad days, and on the good days, I like to enjoy with the rest of the family. The hardest question we get is “How is Isabella doing?”  On the one hand, things may appear stable for now, but brain tumors are like ticking time bombs, waiting to explode.  But the one thing that this whole experience has taught me is to enjoy every day as they come.

Thanks for reading this blog.

A Chance to Help

We’ve all had many opportunities in our lives to help others.  That help may come in many different ways from helping someone open a bottle of ketchup, to helping someone do homework, or helping someone move from one house to another.  Usually, most of our help is offered to people close to us, whether it be family, friends, or other acquaintances.  But it isn’t often that we are given the opportunity to save someone’s life, and it’s probably even rarer to save a complete stranger’s life.

On a couple of occasions, I've posted about the bone marrow donor program (DKMS) and encouraged everyone to become a donor.  Recently, I received the following note from a friend.

Hi Roneil, I wanted to let your family know that I signed up with DKMS back in 2009 when you wrote about the little girl who needed a bone marrow donor. Today I go for a bone marrow blood draw because I have been found to be a potential match for a man with leukemia who needs a transplant. I hope I'll be a match and able to help! I wanted to say Thank You to you for the post, I don't think I would have ever signed up if you hadn't made it so easy. I hope things are going well, and healthy, for you all!! ~Erin

Good luck, Erin.  Even though you’ll be doing all the heavy lifting, I am glad I was able to potentially help save someone.  Hopefully, this note will also inspire others to sign up and become donors.

http://www.dkmsamericas.org/

Home Again

Thankfully, this chemo cycle went with no unexpected issues and we are now all back home.  Isabella is feeling fine so far and has eaten well, with no signs of nausea yet.  Our plan is to take it easy over the weekend, then head back into the City next week for a transfusion.  But now that school is over, we have the rest of the summer to enjoy!

Here are a couple pictures from the week.  It seemed to have a bongo theme…

Gifts from the Heart Update

If you recall, our school held a toy/book drive a couple months back.  “Gifts from the Heart” collected several boxes of toys, book, movies, and arts & crafts.  There was also a significant monetary donation made to the Monkey in My Chair foundation thanks to the money collected from this drive.

The folks that ran the drive timed it so that they could deliver the boxes while Isabella was here at the hospital.  This was especially nice since Isabella got a lot of attention when the giant load of boxes were delivered, and the hospital just completed renovations to the playroom area, so there’s nothing better than having a bunch of new toys to stock it!

We’d like to thank everyone involved in putting the drive together and to everyone who contributed.  Nobody likes being at the hospital, but all of these items will go a long way to helping children like Isabella make the best out of their time there.

Here’s a picture of Isabella standing in front of all the boxes of donated stuff!

Isabella checks out one of the movies that was in the boxes.

Back to the Hospital for More Chemo

After an awesome Father's Day weekend, we are now heading back to NYU for another round of chemo. We are hoping for another uneventful week and should be home on Friday. This would have been Isabella's last week in school, so instead her last day of school for the year was on Friday. Once she's done this week, we'll have the rest of the summer to enjoy.

Big Sigh of Relief

So after two days of being sent home from school for vomiting, we scheduled Isabella for an MRI today. Our doctor must know the immense anxiety that parents go through when awaiting the results, so as soon as she saw us in the waiting to tell us the results, the first thing she said was that everything looked stable. We immediately breathed a sigh of relief then went back to her office to take a closer look at the scans. We were fully expecting to see tumor growth which accounted for Isabella's vomiting. However, it could have been a stomach virus or anything else (we may never know), as long as it wasn't tumor.

In addition, her blood counts are also steadily improving, but not yet at levels to continue with the next round of chemo. We won't start another round until possibly the week after next.

So enjoy your weekend, I know ours will be much more enjoyable now!

Troubling Signs

On Wednesday and Thursday, Isabella vomited at school and was sent home. This is a very troubling sign that may indicate tumor progression. We have an appointment to have an MRI on Friday to see what is going on, but needless to say, Julianne and I are very anxious.

There's not much more to write until we get the results on Friday afternoon.

Updated: Attn: New Jersey Coffee Drinkers!

5/20 - Updated with Pictures Below!

Attention New Jersey coffee drinkers (and anyone in the tri-state area, I guess).  Isabella’s artwork, that was recently on display at a New York City exhibition, is now on display at the Starbucks in Englewood, NJ until May 31.  Her “Rainbow House” is in the back right corner of the café.  The address of Starbucks is:

17 East Palisades Ave.
Englewood, NJ 07631

So while you sit sipping your frappucino, you can brag to your friends that you know that artist!

5/20 – I was able to get to the Starbucks today and saw Isabella’s artwork on display.  It was pretty cool when I walked in and told the people around that Isabella drew the one drawing.  Here are some shots!

Home Sweet Home!

After a relatively uneventful week of chemotherapy, Isabella is now home relaxing in front of the TV.  So far, her appetite hasn’t been affected yet and she hasn’t had any nausea.  She felt good enough to participate in several activities all week.  In previous cycles, she didn’t feel like doing anything during the chemo.  As you can see from the picture below, she felt good enough to at least walk part way from the hospital to Grand Central Terminal.

So our plan is to enjoy the weekend, and potentially go to school next week, depending on how her blood counts are.  Have a great weekend all and enjoy these pictures.

Isabella sits on her food tray to draw on the whiteboard in her room.

Although Isabella’s right leg is still weak and she’s unable to jump very high, she played hopscotch with her physical therapist.

Isabella plays “Sorry!” with a volunteer as her nurse checks the chemo hanging from her IV pole.

Isabella walks with mommy and grandma from the hospital, free from any tubes and poles!  Nathaniel is concentrating on Angry Birds on the iPad.

Another Round of Chemo

So we checked into NYU Medical Center today for another round of chemo.  We are using the same concoction from last month, which Isabella seemed to tolerate fairly well.  Her blood counts recovered relatively quickly compared to the chemo blend from the previous rounds.  This doesn’t necessarily mean the chemo is working less or more, but what it does do is allow us to start another round sooner than we had before.

In the last couple of weeks, we have noticed some signs that Isabella has gotten weaker physically.  This really has us worried because this could mean that the tumor is progressing.  This is why we were glad to get back in sooner rather than later to start the chemo.

So as far as this round is concerned, we should be done and going home on Friday, then we’ll stick to trying to avoid any fevers and infections that would land us back in the hospital.  Sadly, we are so used to being at the hospital that everything is practically routine at this point.  Hopefully, these next few days will fly by and it’ll be Friday before we know it.

A Special Mother’s Day Weekend

In addition to this being Mother’s Day weekend, Isabella had her first communion today.  We’ll be sure to enjoy the remainder of this weekend since we’ll start another round of chemo on Monday.

So to all you mothers out there, enjoy your day!

“Isabella” Top Name for Baby Girls in 2010

Maybe this will generate more traffic to the web site.  Isabella actually owns two of the top three names on the list.  I believe that would make us trend-setters.

http://today.msnbc.msn.com/id/42912883/ns/today-parenting/

The 2010 baby name list is out, and the
classics are reigning supreme once again. But
new parents are also finding name
inspiration in interesting places, including the
"Teen Mom" reality show, "Twilight" and even
Angelina Jolie's kids.
The Social Security Administration, which
tracks baby names in the U.S., announced the
top baby names of 2010 exclusively on
TODAY. The most popular names for girls
are:

1. Isabella
2. Sophia
3. Emma
4. Olivia
5. Ava
6. Emily

7. Abigail
8. Madison
9. Chloe
10. Mia
And the top boys' names are:
1. Jacob
2. Ethan
3. Michael
4. Jayden
5. William
6. Alexander
7. Noah
8. Daniel
9. Aiden
10. Anthony