Back to the Hospital

Isabella woke up with a fever so we took her back to the hospital. The last few days have been fairly quiet and uneventful. Isabella has been home from school. We picked up her new foot brace on Monday and she got a new pair of sneakers yesterday.

So this is very disappointing that we have to head back to the hospital but it wasn't completely unexpected. Isabella's followup appointment yesterday showed that her white cell count has bottomed out so she is susceptible to infections. Hopefully, we'll only be there a few days and be back home in time for Christmas.

WE'RE HOME!!!

We are all home now. Isabella hasn't felt like doing much so we're just going to lounge around and watch TV. We have a follow up appointment on Wednesday and we'll start doing blood checks to watch her blood counts.

 

Here are a couple pictures from the hospital.

 

Looney Lenny visits Isabella in the playroom.

Daddy and Isabella take a nap.

Isabella reads cards that her classmates made for her.

Almost Done with Chemo

So it's been a pretty rough week with Isabella in the hospital. Thankfully, Isabella hasn't had as much nausea as she had in previous cycles (although it was a little worse today). Actually, the worst part has been her frequent urination. Because of some of the toxic effects of the chemo on Isabella's other organs, they are also hydrating her with a lot of IV fluids. They are giving her so much fluid that she has to go to the bathroom every hour or so, which really makes getting any sleep tough on everyone. So the lack of eating plus the lack of sleep has made Isabella really weak (which in turn has been very difficult for Julianne and me to deal with).

Isabella did have a nice pick-me-up yesterday, when two of her teachers from school came to visit her. They brought her a bunch of gifts and activities and also some cards that her classmates made for her. Isabella was very excited to see them as she gave them a tour of the pediatric floor and played games with them in the playroom. That was certainly the highlight of her week.

Well thankfully we're almost done at the hospital. Friday will be the last day of chemo and we're looking forward to being discharged on Saturday. We don't have much planned going forward and don't know what we're doing for Christmas yet. We're just planning on staying home for the next couple of weeks and hoping that Isabella doesn't develop a fever. Since we expect her white cell count to drop significantly, her immune system will be severely compromised, so if she does develop an infection, we'll need to go back to the hospital for at least another week. Our doctor has told us that we should expect her blood counts to bottom out right before Christmas, so we really don't want to take a chance that we'll be in the hospital for Christmas, so we're going to keep visits to a minimum.

A Sad Day of Remembering

Isabella just completed the first day of chemo.  Not much to report yet.  Hopefully, we'll be out of here on Saturday.

The last time we were in the NYU Pediatric Unit was on June 5, 2009, about a year and a half ago.  On that day, we headed home after Isabella completed her recovery from a stem cell transplant.  We were hoping to never have to return here.  As we walked into the unit, we were immediately flooded with emotion as we went through all the routines of hospital admission and treatment.  Overall it's a sad day as we remembered a lot of things we were hoping to forget:

• ...remembering all the nurses, nurse assistants, maintenance crew, and even the lunch ladies and having them remember Isabella
• ...remembering how horrible the elevator banks are at NYU (hint:  during peak times, jump on an available elevator no matter what direction it's heading.  If you wait until it comes back, chances are it'll be full.)
• ...remembering you can save time and keep warm if you're heading uptown by using the Rusk entrance instead of the NYU main entrance (and you can visit the botanical garden on the way)
• ...watching Isabella instinctively offer her arm to have her blood pressure checked and remembering to hold her own shirt up as the nurse checks on her mediport
• ...packing shorts and t-shirts knowing how hot it is in the rooms
• ...remembering that the rooms are so dry that we used to lay wet towels over the radiators to get some moisture in the air
• ...remembering how awful the wifi connection is at the hospital because it kicks you off every few minutes and you have to reconnect
• ...remembering all the items that I used to "spy" as we played I Spy when we walked around the unit
• ...remembering the hopscotch drawn on the floor and how Isabella used to play on it.  She can no longer play hopscotch because her right leg is so weak.
• ...knowing how to work the IV unit
• ...remembering that the DVD Library has odd hours so rushing there as soon as they announced they were open (today, they were opened from 7:30 to 7:45)
• ...remembering how crappy it is to not have the window side of the room

And that was just after being here a few hours.  I'm sure we'll hit a few more before Saturday.

More Chemo This Week

On Monday, we will head into the City to start a second round of chemo.  This round will consist of a different set of drugs than the first round and will consist of higher dosages.  Because of that, the chemo needs to be administered in the hospital and we will be staying there for the next few days.   Hopefully, we’ll be back home by the weekend, and with any luck, Isabella will be done with any nausea or fevers before Christmas.

Speaking of Christmas, we put up our tree today.  Here are a couple pictures from the weekend.  Enjoy, and wish us luck for the week!

Post Thanksgiving Update

We enjoyed a very nice Thanksgiving dinner over my mom’s house with friends and family.  On Saturday, Isabella had another MRI, and unfortunately, it shows that the tumor continues to grow.  We were expecting this because we have noticed she is weaker in general, although we were hoping for at least a stable scan.

We will be talking with our oncologist to start the next round of chemo asap.  This round will be a higher dose and with different drugs which will hopefully have some effect.  Isabella seemed to tolerate the last round really well, as she had very little nausea symptoms and her blood counts never really bottomed out.  Her hair has started falling out, but aside from her hair looking a little thinner, you couldn’t tell just by looking at her.  We expect it to all fall out with the next round.

Two Years Later

It’s hard to believe it was two years ago when we started this journey, when Isabella was diagnosed with brain cancer.  Part of me remembers it like it was yesterday, yet, part of me feels like we’ve been living like this for a million years.  Unfortunately, because of Isabella’s recurrence, this anniversary is a lot more somber than last year’s.  Last year, we had much more hope to cling to, and you can tell if you read that post (“One Year Later”).  Now, we just go from day to day – our long term outlook is now just mere weeks instead of years.  I would be ecstatic if I were able to write a “Three Years Later” and a “Four Years Later” post, but we don’t look that far ahead.  Right now, we’re treating Isabella as best we can and for as long as we can.

I know a bunch of people jumped on board this blog sometime in the middle of our journey.  For those of you, I recommend reading the first couple of weeks of post which narrate some of the events we went through in those first harrowing days.  As always, you can see all the archived posts along the left side.

The First Week (11/16/08 to 11/23/08)

The Second Week (11/23/08 to 11/30/08)

As far as upcoming treatment, we’re still not sure what’s next. We know there will be an MRI, then potentially another round of chemo, although we’re not quite sure which cocktail of chemo this time.

Other than that, we’re looking forward to this holiday season.

Quick Update

So it’s been over a week since Isabella got her chemo.  Fortunately, she hasn’t developed any side effects yet.  Her appetite has been fine and she’s had no nausea and her blood counts are still good, so we don’t need any transfusions.  Isabella has been going to school regularly as well.  Early in the week, she was a little weak, but improved over the course of the week.  If her hair is going to fall out, it usually takes a few more weeks.

So that’s it for now.  Not much else to report until the next round of chemo, which should be in a couple more weeks.

So Far, So Good

Well, so far, Isabella has been doing really well.  She hasn’t had any nausea yet, and she’s been eating pretty well.  Yesterday and today, we played a little baseball and today, we hung out at the mall for a couple hours and bought her a bunch of new clothes.  Isabella is feeling so good, in fact, that she wants to go to school tomorrow.  So we’re going to see how that goes, but we’re going to hang out close to home just in case she runs out of steam early and we have to bring her home.  She’ll also have a blood draw tomorrow to see how fast her blood counts are dropping so we’ll get an idea of when and if she’ll need a transfusion.

So, I’m gonna keep this brief, and hopefully, Isabella’s side effects remain nil.

Can you guess Isabella’s favorite color?

Look out, Grandma!

Grandpa being taken for a ride.

Done With the Chemo, For Now

So Isabella finished up the second day of chemo uneventfully.  Now we play the nervous waiting game.  We’ll monitor her closely for nausea and fevers, although we don’t expect the nausea to hit for a couple more days.  She has been ok so far and has been eating with no problems. 

On Monday, we’ll do our first of several blood draws that will check her blood counts to see when she will need transfusions. 

Since we don’t know how Isabella will react to the chemo, we don’t have any plans for the weekend (or for the next few weeks for that matter).  We’re just going to sit around home and take it easy, and maybe catch up on some movies.  Also, her hair probably won’t fall out for a couple of weeks, which we’ll be sad to see.

Here We Go Again

So we officially start up chemotherapy again tomorrow, Thursday, November 4.  Our oncologist has put together different drugs for a custom treatment plan for Isabella.  There is no protocol anymore – at this point, we’re just trying anything in hopes of trying to contain this thing.  Right now, we have two cycles of chemotherapy planned.  For the first one, she’ll receive two drugs over the course of two days.  We’ll then monitor her blood counts, and over the course of the next three weeks, she’ll probably require some blood transfusions.  With low blood counts, Isabella will be susceptible to infections, so we’ll also be watching out for fevers – if she suddenly develops a fever, we will need to be admitted to the hospital for antibiotics for 10 days.

In about a month,  we’ll try two different drugs for the second cycle.  The theory behind this approach is that since these drugs work in different ways, if we attach the tumors from different angles, we have a better chance at some sort of response.  Shortly after the second cycle, we’ll do another MRI and see if there is any response and either try something else or do more of the same.  At this point, we’re not looking past that next scan.

Isabella did well with the chemotherapy last time.  She tolerated it fairly well and the tumor responded well.  We’re hoping that it’s the same this time around.

Thanks to everyone for your support and well wishes.

Happy Halloween Weekend

As promised, we had a great Halloween weekend.  On Friday night, the kids had a Halloween dance at their school.  On Saturday, we went for a nice walk through the New Canaan Nature Center discovery trails.  On Sunday, before the the trick-or-treating festivities, we played in some leaf piles.  As they say, pictures are worth a thousand words, so we have a few thousand words below!

(Click on each picture to see a larger view!)

More Scans, More Answers

So I mentioned in the last post that Dr. Wolff (from Tufts and previously from MD Anderson) did not rule out radiation scarring in Isabella’s brain.  MRIs are open to interpretation and does not distinguish readily between tumor and scarring.  Based on some of Isabella’s clinical symptoms, there was still a possibility that this wasn’t tumor.  Julianne found a study being done at the National Institutes of Health (NIH) in Bethesda, MD, where they were doing a special MRI (with spectroscopy) which looked at other characteristics in the brain.  The study is to see whether this MRI with spectroscopy can provide more insight into whether a suspect area is tumor or scarring.

We drove down to Bethesda this week to take part in the study in hopes that the more detailed MRI would put to rest what is inside Isabella’s head.  Unfortunately, we did not receive the answers we were looking for.

Based on the scan results, the doctor is certain that the lesions are indeed tumor.  Also, based on some of the measurements, they showed that the tumor has grown and that it appears to be highly aggressive.  The worst part is that the scan showed two new spots on Isabella’s right side of her brain.  It is extremely uncommon for tumors to “cross hemispheres”, so the doctors suspect that tumor cells broke off, traveled through the spinal fluid to the other side.  We are scheduling a spinal MRI next week, but this new piece of information is extremely troubling.

Also, we have been in touch with a neurosurgeon at Robert Wood Johnson Hospital in New Jersey, where they have one of the MRI guided laser treatment machines that I’ve written about in the past.  These laser machines are able to treat tumors that were previously considered inoperable.  However, these laser treatments are more suited to tumors that are in chunks (focal), as opposed to tumor cells that are more spread out over an area (diffuse).  We met with the doctor yesterday on our way back from Maryland, and unfortunately, since Isabella’s tumor has some diffuse components, he does not consider her a candidate for the laser surgery.

If there is anything positive to gain from this new information is that the new lesions found on the right side appear to be focal and in an area that may be resectable.  One of the other treatment options that we spoke about previously is immunotherapy (or vaccine treatments).  But in order to create the vaccine, you needed a certain amount of tumor and Isabella’s was not resectable at the time.  We are now discussing with our oncologist to see if we can verify that the new tumors are resectable, and if so, we would like to collect it for use in a vaccine.  I should also mention that the vaccine would most likely not “cure” the cancer at this point, but possibly only extend survival.

So, to summarize everything, here is where we are.  Our only option at this point is chemotherapy, and we will be looking to start chemotherapy very soon, possibly next week, following a spinal MRI.  However, before we start, we would like to resect the new tumors if possible to be used for immunotherapy.  One downside to surgery to resect the tumor is that it would delay chemotherapy further, from a few days, to possibly a few weeks.

In the meantime, we plan on enjoying the upcoming Halloween.  We’ve already bought Isabella some special, no sugar, candy that she will be able to eat on Halloween.

Thanks again for keeping up with us through this difficult time.

Back Where We Started

So over the last two years, Julianne has been scouring the Internet for any and all treatment options for Isabella.  As I’ve written, her tumor is extremely rare and very few people have worked with it before.  Just to show how rare, she only found one case study that referenced her particular tumor type where the patient responded to chemotherapy, even after recurrence.

As we got the news of Isabella’s recurrence, we have been working with our oncologist on different types of chemo treatments that we can try (informally, they’re called cocktails as they mix and match several types of chemotherapy to see what gets the best response).  Of course, we brought up that case study for the single patient and our oncologist informed us that she knew the doctor that worked on that case study and that he had just moved to Tufts Medical Center in Boston.  We contacted him and he agreed to see us and look at Isabella’s case.

We met with him for a couple hours two weeks ago where we basically went through our entire history of treatment and he briefly looked at the latest scans.  The good news is that he still hasn’t ruled out radiation necrosis.  We also spoke about what our options are if it is decided that it is tumor.  He mentioned that although Isabella’s tumor type may be rare, it appears to be of a type that responds to chemo, even after recurrence.  So we were inspired that we should never give up when treating this tumor.

So here we are, more than three months after a routine follow up MRI showed some new areas of concern in Isabella’s head.  Back then, we weren’t sure if it was tumor or radiation changes, and today, we’re still not sure.  We still don’t have a treatment

New Additions to the Family

We recently bought two new pets for the kids, sugar gliders, also known as sugar bears.  These cute little furry animals are part of the marsupial family and come all the way from Australia.  The attractive features they bring as pets are that they are clean, friendly, and need relatively little maintenance.  We’ve had them for about a week now and are still going through the bonding phase, and we think they are getting a little more used to us now. 

Here are a couple pictures and videos of “Oriette” and “Squeeky”, our new sugar gliders.  (FYI, Annalise wanted to name hers Oreo because it was black and white, but since it is a girl, she wanted the name to be more feminine, hence, Oriette!)

Click each picture for a larger view.

Prayers for Another Child

Shortly after Isabella was diagnosed with her cancer, one of our neighbor’s children, who also happened to be in Isabella’s class, was also diagnosed with cancer – this one leukemia.  He went through his treatment and was showing that he was clear until his last scan, which showed his cancer had returned.  He will now require further treatment and probably a bone marrow transplant.  If none of his family members match, they will need to find a match in the national registry to find a matching donor.

If you haven’t already, I urge you to register to become a donor.  They will send you a kit, where all you need to do is swab your cheek and mail it back to them.  There are some restrictions to be eligible to be a donor, so if you don’t qualify, you can contribute monetarily (it costs $65 to process registrations).

You can register or get more information here:

http://www.dkmsamericas.org/bone-marrow-donors

Fall Fun–10/10/10

Here are a couple recent pictures showing some fun that we’ve been having.  Enjoy!

The kids try out this tractor during our visit to the Norwalk Department of Public Works.

Another picture of the kids at the Norwalk DPW.

Roneil getting ready for the first game of the Yankees playoffs.  He’s wearing his Yankees hat, shirt, jacket, snuggie, foam finger, shopping bag, and coffee mug.

Annalise is pretty upset that all the Yankees ice cream is gone!

The kids had their own sleepover party last night.

Isabella shows off a new hand-made shawl from a friend.

The kids enjoy treats from apple picking.  We actually brought a portable scale to the orchard so that we can weigh the apple that Isabella ate.  (By the way, the apple Isabella ate was 104g and 12g of carbs.)

From the odd and bizarre file.  This half eaten apple was still on the tree!

The kids pick out their pumpkin to prepare for Halloween.

Nervous Wrecks

We haven’t had many medical updates recently because frankly, there hasn’t been much to report.  Since it’s been awhile, let me take a minute to review where we are.

In mid-July, a routine follow-up MRI showed areas of concern in Isabella’s brain which immediately gave us reason to worry that Isabella’s cancer had returned.  Our doctors were split on whether this was recurrent tumor or changes due to radiation, so they suggested we do another MRI a month later.  Also in the meantime, we sent out several requests for second opinions.

The wait for the next MRI was very difficult for us because Isabella exhibited many symptoms that the tumor was indeed affecting her.  Her right hand and foot progressively got weaker and her mental functions degraded as well – she found it difficult to talk and put sentences together.  The MRI showed that the spot grew slightly and we worked with her oncologist to develop treatment options.  We were also still waiting for responses for second opinions so we stayed in a holding pattern.

While we waited for a treatment plan, we put Isabella on a modified Atkins diet.  Almost immediately, we noticed that Isabella’s symptoms stopped getting worse and in some cases, such as her mental function, actually improved over time.  She seemed to have plateaued, which gave us a little bit of relief.

Isabella also has been loving going to school.  At first, we were concerned how she we do physically, but the school has been very accommodating in assisting Isabella.  At the beginning of September, she was deteriorating so fast, we thought that she would need a wheelchair.  But fortunately, she improved physically and has been able to walk on her own.  We were also worried because all of her friends from last year went to different classrooms, but Isabella, with her magnetic personality, had no problems making new friends.

This past Tuesday, almost three months after the spot was first detected, Isabella had another MRI.  We were hopeful that since Isabella’s symptoms stopped getting worse, perhaps the tumor had stopped growing.  But unfortunately, the results showed that the spot had grown again, albeit slightly, but it did grow, and our doctor believes that we should start treatment as soon as possible. 

Over the last few weeks, I described some new and innovative treatment options for brain tumors, but unfortunately, few of them are mature enough for Isabella.  Ideally, if we had all the time in the world, we could somehow keep the tumor in check, and let these other technologies develop an alternate treatment or even a cure.

Our doctor has recommended a couple chemotherapy options, which we are currently evaluating.  Although we’re not looking forward to the side effects of chemo and the hospital stays, we are hopeful that the tumor responds to the chemo positively as it did last year.  Again, we’re trying to buy time here in the hopes that something, anything pans out – whether it’s a vaccine or a laser or a magnetic helmet.

Cancer Awareness Month Reviewed

So here we are at the end of September and the end of Pediatric Cancer Awareness Month (and Prostate Cancer Awareness Month, Ovarian Cancer Awareness Month, and National Sewing Month).  I hope that I’ve helped bring at least a little bit more awareness to this horrible disease that affects not just mine, but thousands of other families across the country.  What have we learned?

• Every day, 10 children will be diagnosed with a brain tumor while 3 more children will die.
• Many of the symptoms of brain tumors are common ailments that can be misdiagnosed very easily.
• Pediatric cancer research funding is woefully underfunded compared to other cancers, especially at large, well known organizations, such as the American Cancer Society and the National Cancer Institute.  If you want your money to go specifically to children’s cancers, you need to pick organizations that are solely dedicated to them (such as St. Jude’s Children’s Hospital, the Pediatric Brain Tumor Foundation, or the Children’s Brain Tumor Foundation).
• There are a bunch of new brain tumor treatments on the horizon, but unfortunately, most of them target adults before they target children.
• If you are diagnosed with cancer, you should collect as much tumor sample as possible and bank it (ask your medical professional or do a search for tumor banking).  This may be used to create a customized vaccine for your cancer.
• Pork rinds are our best friends!

Pediatric cancer awareness should not be limited to a single month.  Every day, kids like Isabella are fighting for their lives while their families try to cope with their future’s uncertainty.  So the next time you find yourself with some problem, think about these kids and compare your problem with theirs.  That should help put everything in perspective.

Thanks for reading the blog. 

CBS Story on Immunotherapy

In case you missed it, CBS News had a story on immunotherapy, using vaccines to treat cancers.  It’s about a little girl who had a neuroblastoma, which is a cancer of the nervous system.

http://www.cbsnews.com/stories/2010/09/29/eveningnews/main6912677.shtml

Also, check out this story they did last May about tumor vaccines.

http://www.cbsnews.com/video/watch/?id=5014935n