Quick Update 10-24-11

It’s been a pretty quiet couple of days.  Isabella is still having occasional headaches and on some days, she is better than other days.  On some days she has some bad headaches and doesn’t feel like moving, while on some days, she feels good enough to go to school for a half day.  We’re continuing with the steroids and we’ve started some at home chemotherapy.  Her appetite has slowed from can’t-stop-eating to something more normal and manageable.  Physically, she’s much weaker than she was a couple weeks ago as she finds it very difficult to walk and speak.

Other than that, there’s not much else going on.

Keep Kids Alive Petition Update:  I’m glad to report that the Keep Kids Alive petition has reached the 5000 minimum signatures to garner some attention from the White House.  But that doesn’t mean you don’t have to sign if you haven’t already.  Let’s show Washington what’s really important, I mean, the most popular petition on the site right now is to legalize marijuana!

And while you’re at it, how about sending a letter to your representatives to spend some money for children’s cancer?

Creating Hope Act Letter

There’s a Groupon in my Chair

Earlier this year, I introduced you to this charitable program called “There’s a Monkey in my Chair” founded by the Cure Starts Now foundation.  This program helps the children in Isabella’s classroom cope and understand her absences from class, while providing a way for Isabella to stay in touch with the class while she is out.  This is one of the organizations where your money can make a difference in the lives of children with cancer.

For the next couple of days, you can make a donation to the Cure Starts Now foundation through Groupon and you donation will be matched 100% by Chiquita.  Your donation will go towards providing these monkey kits to sick children all over the country.

Here’s the link.

http://www.groupon.com/deals/gt-the-cure-starts-now

Tuesday Update, 10/18

For the last week or so, Isabella hadn’t complained of any headaches, and has actually felt pretty good.  She has been eating a ton and has gained 6 pounds since she has come home from the hospital.  That may not sound like much, but considering that is 15% of her body weight, she has certainly packed on the pounds, and you can tell as she is starting to look a little “plumper”. 

The steroids that we have been giving her to help alleviate the pressure in her head is causing her voracious appetite. Over the last couple days, we have slower started tapering the dosages of the steroids.  Unfortunately, yesterday, Isabella went home early from school because she started feeling headaches.  This immediately got us worried and we contacted our doctor who told us to keep the existing dosages and to not taper the steroids.

Today, Isabella has felt a little better and actually went to school for the second half of the day.  We are still waiting to start chemotherapy treatments.  Although  we will be giving much lower doses of chemo this time, it is still risky, especially with the bleeding in her brain.  But we have to try something…

Below are some pictures from the weekend when we went apple picking and went through a corn maze (without assistance from 911!).

Isabella Went to School Today

I am happy to report that Isabella went to school today for the first time in a week!  Because of the steroids, she does have problems falling asleep at night, and because of that she was an hour late to school.  We fully expected her to be super tired and only spend an hour or two at school, but we were surprised to see her make it through the whole day.  The only oddity is that with her increased appetite (again, because of the steroids), she was hungry at the end of the school day despite eating a full lunch.

We have begun lowering her doses of the steroids, but I have heard that they need to be tapered anywhere from a couple more weeks to a couple more months.  If you’ve ever seen chubby cancer patients, you’ll know it’s because of the steroids.

So we continue to watch Isabella closely, probably to the point that it’ll drive us (and her) mad.  She hasn’t complained of any more headaches, but there are some signs of weaknesses.  I should tell myself to not go too crazy looking at every little thing otherwise I will go crazy.

Two (Actually Three) Big Favors

I’ve got three big favors to ask of you.  I normally don’t like to mix politics with this blog, but in this case I need to.

I previously wrote about a bill in Congress called the “Creating Hope Act”.  This bill is designed to provide incentives for researchers and pharmaceuticals to develop more effective treatments for pediatric cancers.  I also previously wrote about how woefully underfunded children’s cancers are compared to other cancers.  The National Cancer Institute provides less than 3% of their budget to children while the American Cancer Society provides less than 1 %.  Treatment for children need to trickle down after years of testing on adults, and aren’t even that effective since children’s cancers are very different from adult cancers.  It’s a shame that our children suffer because they don’t have a large voice in Washington DC.

So the first favor I ask is to follow this link below and fill out your information.  The website will prepopulate some forms and address them directly to your congressmen and senators.  It shouldn’t take more than two minutes and you don’t have to lick any yucky stamps:

Creating Hope Act Letter

The White House has setup an online petition web site where people can submit topics that they feel are important.  If the petition gets 5,000 signatures, White House staff review the petition and send it to policy experts.  Someone has created an online petition for the government to allocate more funds to better treat childhood cancers.

So my second favor is for you to sign the petition below.  (You can look for me, I am signature #2385!)

Keep Kids Alive Petition

And my third and final favor I ask is for you to share these links with all your friends whether it be via Facebook or Twitter or E-mail or another blog.  I don’t have a great deal of confidence that either will do any good, but it does sort of help ease this smothering feeling of helplessness that overcomes us.

Thank you.

Home Sweet Home

After four harrowing days in the hospital, we finally have Isabella back home.  Early last week, Isabella started complaining of some headaches and we noticed other signs of neurological issues.  An MRI showed that her brain tumor is growing and is causing bleeding in her head.  This bleeding plus tumor growth was causing severe pressure in her head which was causing her symptoms.  We were immediately admitted to the hospital where Isabella was given steroids.  Isabella looked so bad on Thursday that we were making plans to have family come in to say their last goodbyes and we had a priest come in to give last rites.

Fortunately, the steroids successfully relieved the pressure in Isabella’s head, and some of her symptoms subsided and she started to feel better.  The steroids don’t “fix” the tumor growth or the bleeding, but at least it helps Isabella feel better (as well as increasing her appetite!).

On behalf of our family, I’d like to thank everyone who showed their support and spread the word about Isabella.  It has been a terribly stressful few days (and we have many more to come), but it was kinda nice to see family, friends, and even strangers rally around our little girl.  I know I’ve been saying this for almost three years, but it is incredibly humbling.

Thanks again for joining us on our journey.  Here are a few pictures from our trip home today.

While we were waiting to be discharged, Isabella wears a crown and waves a wand that she made during an arts and crafts activity.

Amazingly, Isabella was so excited to go home that she walked part of the way to the train station.  Incredible considering that on Wednesday and Thursday, she couldn’t even stand up on her own.

When we finally got home, Isabella chilled in her chair and enjoyed the 80 degree weather of our Indian Summer.

What better way to celebrate being home than with some S’mores!

Quiet Sunday - Heading Home?

Today was a quiet, restful Sunday, especially compared with the commotion from yesterday's visitors. Isabella's appetite is certainly picking up because of the steroids. Last night at midnight, she finished off the other half of a slice of pizza. At 7am this morning, she woke up and asked for more pizza. I ran out to four different pizza spots and none of them were serving before 11am. Instead, I brought back a hash brown which seemed to satisfy Isabella. Until 11am, when she asked for the pizza that she was craving.

She also has not been having the headaches as frequently as the previous days. We had been giving her Tylenol every four hours around the clock to prevent any headaches. In the afternoon, since she hadn't complained of a headache in a while, we decided to stop the Tylenol until she has another headache, and so far so good. We did notice that her speaking was a tick down today, but we are hoping it is only because she is so tired from yesterday. But she is still a hundred percent better than she was when we brought her in. At that time, we were planning to have people visit to say goodbyes. On Friday, we actually had a priest come by to administer last rites.

Our doctor also stopped by and noticed how well Isabella was doing and mentioned that we will probably be able to go home tomorrow (on Monday), as long as there is no drastic change for the worse. As I mentioned before, we'll be tapering off the steroids over the course of the next couple weeks or so, and thankfully we'll be able to do that from home.

We are still unsure about the possibility of upcoming treatments. Because of the bleeding in Isabella's brain, we can't do any chemotherapy since the chemo affects the blood counts. In particular, chemo suppresses the platelets, which is the blood component that stops bleeding. We would have been in serious trouble if Isabella had low platelets while having a bleed in her brain. So for now, we hope that the bleeding in her brain subsides and that the tumor growth does not put additional pressure or cause additional bleeding. Although this immediate crisis seems to be stable for now, we're not completely out of the woods yet, because if we can't control the bleeding or the tumor growth, the pressure will eventually kill her. We also hope that we don't get the "we've done all we could" speech from our doctor.

We'll worry about that then, I guess. For now, we all can't wait to get home.

Saturday Update–Slow, Steady Improvement

First some housecleaning:  You can sign up to receive e-mail updates for the blog over on the right side of the page, but keep in mind these updates only come once a day.  If you’d like to receive updates closer to when I post them, you can “subscribe” to me on Facebook at www.facebook.com/icatar.

Isabella had an even better day today.  She ate and drank a lot more, spoke a ton, and even walked around a bit, which is yet another thing she hadn’t been doing for a couple days.  Although she continued to have headaches early in the day, she did not require as much morphine today as she did yesterday, so hopefully this means that the pressure is steadily being relieved in her head.

She also had a bunch of visitors as her brother and sister and all grandparents came by to visit for the day.  We tried to get her to take a nap before they got here, but she didn’t.  It didn’t matter though, because she made it through the day with them, which included watching movies and playing in the playroom. 

We also don’t know when we’ll be going home yet,  although we’re pretty sure it won’t be on Sunday.  Due to the high doses of steroids she is receiving to relieve the pressure in her head, we can’t just suddenly stop the steroids all of a sudden.  She will need to be weaned off them over time.  But before then, our doctors will need to evaluate her to make sure that she is headed in the right direction before they let us go home.  In my not-so-professional opinion, she is headed in the right direction, so hopefully we can go home early next week.

Before I let you go, here is a picture of Isabella with Annalise and Nathaniel catching Isabella doing what she hasn’t been doing a lot lately – smiling!  The kids were watching a movie and would not cooperate , that is until I offered them each a dollar to smile for the picture!

Quick Friday Update

Today was a relatively quiet day compared to yesterday. Isabella woke up around 5am complaining of another headache so they gave her a dose of morphine which allowed her to get back to sleep. During the course of the day, she continued to have more headaches and got more morphine which pretty much knocked her out for most of the day. At one point, she did wake up and was fully engaged with her grandparents who had come down to visit. But she was only engaged for about 20 minutes before going back to sleep exhausted. Around 7pm, Isabella woke up and again was more talkative. Now when I say she's talkative, I mean she'll say a few words at a time, or a complete sentence, but it's not like she is carrying on a conversation. Even so, this is way better than she was even yesterday when she could only manage grunts and cries. What this does show is that the steroids may be helping to reduce some of the pressure from the speech areas in her brain which is allowing her to speak again. Although we are encouraged by the progress, we are still very concerned, especially since she is still complaining of the headaches, so we will continue with the steroids for a couple more days.

Another encouraging sign is that Isabella drank really well today and ate her first real food for the first time in two days when she ate part of a tuna fish sandwich. We were really concerned that her eating and swallowing were being affected by the tumor, but she was able to eat with no problems. We hope that this trend continues so she builds up her energy and strength. We also hope that we won't need to have her use a feeding tube.

So that's it for today, a relatively modest update compared to yesterday's epic saga. On Saturday, Isabella will have her siblings come and visit which always perks her up.

Have a great weekend everyone.

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…