Back to (the new) Normal

Many cancer families use the term the “new normal” to describe how the everyday things in their lives have changed.  After Isabella finished her radiation treatment and showed a few clean scans, we settled into a “new normal” routine as a family.  We knew we could never go back to the way things were before Isabella’s diagnosis, and we knew we had to make the best of our situation.  This new normal included daily nutritional supplements for Isabella, a vastly overhauled diet for the family (lots more natural and organic food), scheduled occupational and physical therapy, anxiety every time it was time for an MRI, and so on.  And for a few months, it was nice to return to normal, albeit a new normal.

Unfortunately, when Isabella’s cancer returned, we immediately got thrown back into the whirlwind of frequent doctors and hospital visits.  We made several trips to Boston, Washington DC, and Philadelphia for consultations.  We would be at the hospital for a week at a time for chemotherapy or for neutropenic fevers.  We had fallen out of our routine.  Even simple things such as eating dinner as a family became a challenge.

However, for the last week or so, we have been back into a sort of routine.  Since Isabella’s blood counts are still slightly depressed, our doctor has suggested we delay this next round of chemo until next week to give her body more time to recover.  Physically, Isabella is doing great and she’ll be able to finish out this week at school.  I have been able to go to work and actually get into a groove to get stuff done.  So even though it’s just temporary, it has been nice to be back to our new normal.

Enjoy these new pictures!

Isabella reads to a dog at a “Read to Rover” event at the local library.

Isabella takes a sip from her “happy cup”.

Isabella and Roneil play some drums on Rock Band.

Nathaniel (and his chocolate goatee) and Isabella try to give their meanest look for the camera.

And finally, Nathaniel gives Isabella a kiss after she gave him a Valentine’s Day card.

There’s a Monkey In My Chair

Isabella has been in school all week, except of course the two days off because of the snow/ice storms.  But when she is out, her desk does not sit empty.  We found this program called “There’s a Monkey In My Chair” that provides a big stuffed monkey that sits in Isabella’s chair while she is out due to treatment.  “Charlie” participates in the classroom activities, and usually one of the classmates is in charge of taking care of Charlie and reporting back to Isabella.  This allows Isabella to keep in touch with her classmates while she is out.  Some of the reports back to Isabella are really cute:

“Charlie went to art but he did not do anything.  He was a little lazy. But he was listening great.”

“Charlie was a good monkey today.”

“Charlie learned about pennies, nickels, dimes, quarters, and half dollars today.”

“Charlie ate his banana at lunch today.”

“At gym, Charlie didn’t run because he didn’t have shoes.”

Unfortunately, Charlie will have to take Isabella’s place again next week.  Our doctors have suggested that since Isabella did not have any severe reactions during this last cycle and that her neurological symptoms have not gotten noticeably worse, that it would be worth another shot for chemo.  After this round, we’ll do another MRI and see what’s going on in there.  After that, we still have no idea what’s next, but we do know that we can’t do this high dose chemo forever.

But Isabella still has another day of school left for her to enjoy before having to go through the chemo again.

Isabella’s Art Work To Be On Display!

As you can imagine, there’s a lot of sitting around and waiting at the hospital.  During that time, Isabella spends some time drawing.  One of her drawings will be on display in a New York City art show that will exhibit art work from sick children.  The exhibit will be on March 13.  Details in the announcement below.  If you’re in the area, stop on by and meet a famous artist!

http://www.artworksfoundation.org/express.shtml

Express Yourself is a creative and performing art exhibition that features the works of children and young adults suffering from chronic and life-threatening illnesses and their siblings.

Express Yourself provides children with the opportunity to be publicly acknowledged for both their struggles and their strengths. In a safe environment, filled with families, friends, healthcare specialists and art therapy patrons, these children sing, dance, recite poetry, play instruments and stand proudly by their works of art.

The process of preparing for the Express Yourself event provides these children with a much needed creative outlet that serves to reduce their stress and anxiety, decrease attention to their pain and normalize their hospital experience.

The exhibition provides all participants with something to look forward to and work towards, taking the focus away from the pain and sorrow of the illness. The event also provides patients and families with social opportunities to interact with other children and families in similar situations and take comfort in shared experiences.

 
Express Yourself - New York
Sunday, March 13, 2011
Kimmel Center for University Life
New York University
60 Washington Square South
(between La Guardia Place and Thompson Street)
New York, NY 10012
Directions
1:30-5:00 p.m.
Performances begin at 3:00 p.m.
Participating Agencies:

• Bellevue Hospital Center
• Blythedale Children’s Hospital
• Brookdale University Hospital and Medical Center
• The Children's Hospital at Montefiore
• Elizabeth Seton Pediatric Center
• Incarnation Children's Center
• Initiative for Women with Disabilities: Young Women's Program at NYU Hospital for Joint Diseases
• Komansky Center for Children's Health at New York Presbyterian Hospital/Weill Cornell Medical Center
• Maimonides Infants and Children's Hospital of Brooklyn
• The Mount Sinai Kravis Children's Hospital
• New Alternatives for Children
• NYU Hospital for Joint Diseases
• NYU Langone Medical Center
• Raymond Naftali Ambulatory Center
• Steven and Alexandra Cohen Children’s Medical Center of New York

If you are a healthcare agency interested in participating in Express Yourself, please call us at (201) 608-0146.

If you would like to submit artwork or perform in our next show, please call us at (201) 608-0146 or submit a contact form.

Home Today!

We got the go ahead to go home and are all now home and resting.  Isabella is still neutropenic (low white cells), but since the counts are rising and she hasn’t had a fever in a few days, they said we could go home.  Of course, we have the normal precautions such as very limited visitors and frequent hand washing, and we have to administer antibiotics for a couple more days.  But, it’ll be especially nice to have everyone home and sleeping in our own bed without tubes and monitors beeping and nurses running around.

Quick Update

The first couple of days Isabella was in the hospital, she had a pretty rough time.  Besides generally feeling bad with the fevers, she also felt a good amount of pain, from what we suspect is some gastrointestinal infection.  The pain had actually gotten to the point where we had to give Isabella morphine to ease the pain.  The doctors have not been able to pin down exactly what might be causing the infection, but they are hitting her with a bunch of different antibiotics.

Isabella has improved pretty well over the last couple of days.  She has not had a fever in a couple days and her blood counts have crept up.  She has also eaten and drunk (or is it drank?) much better than when she was first admitted to the hospital and her pain has subsided a bit.  So our doctors say that if her blood counts keep improving, she may be able to go home on Wednesday.  (Coincidentally, we’re expecting yet another snowstorm here in the NYC area when we hope she’ll be discharged!)  We’ll continue the antibiotics at home, but that’s better than being in the hospital.

So we hope that her immune system continues to improve so that we’ll be able to go home on Wednesday, even if it means going home through the snow.  But in the ultimate act of confidence, I brought all my stuff home today when Julianne came to relieve me of hospital duty.  I hope I don’t jinx us!

The picture below shows Roneil trying to catch some rest while Isabella and Nathaniel play.

Spiked a Fever, Back to the Hospital

Unfortunately (but not surprisingly), Isabella spiked a fever today so we are back at the hospital.  This is standard procedure since her white cell count is so low.  Isabella hasn’t been feeling too bad the last few days since she’s been home from the hospital, and even today, she wasn’t so obviously sick.  But towards the end of the day, she started acting a little grumpy and felt warm and when we took her temperature, she definitely had a fever.

So we’ll be at the hospital for a few days while they pump her full of antibiotics to help fight off any infections.  They’ll do blood cultures to try and determine if the infection is bacterial so they can use the appropriate antibiotic.

With any luck, we should be home by Tuesday or Wednesday.

Simply in Awe

Isabella just got home from school.  That’s right.  The day after coming home from the hospital after five days of intensive chemotherapy, Isabella wanted to go to school.  This will probably be her last day of school for at least a couple weeks as we expect her blood counts to bottom out within the next couple of days.

Everyday, Isabella finds a new way to amaze us, and on some days, she finds multiple ways.  For instance, the last couple days in the hospital, Isabella was too weak to really walk, but when we left the hospital, she walked all the way from her room to the parking lot.  Today, we thought Isabella would only have enough energy to spend a few hours at school and we were fully expecting a call that said she wanted to come home.  But not only did Isabella spend the whole day at school, she also finished an entire OT session afterwards.  And she wasn’t done yet.  After dinner, we went to a furniture store for an hour where she walked all over and even walked up an entire flight of stairs, something she couldn’t do just a few days ago.

She is doing so much better than after the last round of chemotherapy which included the same set of drugs.  At this point last time, she didn’t have enough energy to move from the couch or chew her food.  And although she had a bit of a suppressed appetite a couple days ago, she’s eaten much better the last two days and has not had any nausea yet.

We don’t know whether the chemo is working or not, but Isabella is certainly trying her hardest.  I know she’s frustrated at not being able to do what she used to be able to do just a few short months ago.  Whether it’s climbing stairs or writing her name or just simply talking, nearly everything has become a struggle for her, but she continues to try.  And while she’s willing and able to try, we’ll be there alongside her. 

She has truly become a huge inspiration.

Finally Back Home!

So we finally got Isabella home after spending most of the day in New York City.  We were planning on leaving around noon, but her blood counts were low.  They gave us the option of either getting a transfusion today or coming back to the city tomorrow, so of course we opted to get the transfusion today.  Plus, the kids favorite clown, Looney Lenny stopped by in the afternoon to entertain everyone.  Isabella and Annalise had a great time and both showed great enthusiasm and participated with the magic show.

We also ended up eating dinner at the hospital and finally left around 7pm.  It’s all worth it since we don’t have to go back in until Tuesday (unless Isabella develops a  fever).

What was also nice was the New York city streets weren’t too bad after the snowstorm.  Connecticut was a mess after we got 2 feet of snow, but at least the highways and the City were cleaned up and made the trip a breeze.

Anyway, here are a couple pics from the last couple days.  The plan for the next couple weeks is to try to keep Isabella from developing a fever which would require us to stay at the hospital for another week.  We’ll also probably do another MRI in a couple weeks to see what’s going on in there, then decide what the next course of action is.

Roneil cleans off the car after the blizzard.

Annalise and Nathaniel build a snow slide off the car.

Annalise stands on top of a snow pile that puts her taller than the deck.

Isabella raised her hand for practically every question that Looney Lenny asked!

Nathaniel, still with his clown-phobia, wouldn’t even look at Looney Lenny.

Finally, this picture was from a while ago, but we call it “The Anna Lisa”.

Chemo Update

We’re now more than halfway through this round of chemo and thankfully, Isabella has not experienced any side effects from the chemo yet.  We’re having the same issue that we had the last time, that is, because they are hydrating her heavily through the IV, she has the go to the bathroom every hour.  But she hasn’t felt any nausea yet and her appetite has been really good.

We have two more days of chemo left and we are hoping to be discharged from the hospital on Thursday.  The pending snowstorm on Tuesday/Wednesday should make trying to get home real interesting as the area is expecting a foot or so of snow.

In anticipation of the snow, here are a couple more pictures from last week’s snowfall with the kids having some fun in the yard.  I hope we’ll be able to get home to enjoy the snow.

Update on Upcoming Treatments

Isabella’s MRI yesterday didn’t show that the tumor is any smaller, but it also didn’t show that it had grown significantly so our doctor thinks that it is worth it to try another round of chemo.  We were fully expecting that the MRI would show significant growth and that we would stop any further treatment.  So although we will have another rough couple of weeks coming up with the chemo, we were relieved that the scan was “stable”.

We also decided to start the cycle on Saturday which allowed Isabella to go to school today.  Ironically, because of the snow storm hitting the northeast, it’ll end up being a short day since school will be dismissed early.

So although Julianne and I have been pretty bummed the last couple days, we’ve been trying to have some fun.  A couple nights ago, we played hide and seek around the house.  Here are a couple pictures from that.

Annalise and Nathaniel look for Isabella under the couch.

They still can’t find Isabella.

There she is under their nose the whole time!  I can’t believe she stayed still and quiet the whole time they were looking for her.

It took the kids a long time to find Roneil.  Can you spot him in the picture?

Upcoming Treatments

Happy New Year everyone.  After Isabella’s blood counts showed improvement to a satisfactory level last week, we made an impromptu trip to Vermont to visit Julianne’s parents.  We spent a quiet New Years up there before heading back down to CT on Sunday.  Isabella was scheduled to have another blood draw on Monday, then if the levels were at normal levels, would begin a second round of chemotherapy on Tuesday.  This also gave Isabella a chance to have a day at school, which she was very excited (and nervous) about.

Unfortunately, Isabella’s platelet counts were still a bit low to start chemo.  So our doctor told us to wait a couple days to allow the platelets to recover further, have another blood draw on Wednesday, then expect to start chemo on Thursday. 

In the meantime, we told the doctor that we noticed that some of Isabella’s symptoms have gotten worse, which worried us all.  Again, we changed plans and instead of doing a blood draw on Wednesday, we will be getting an MRI on Thursday (they originally didn’t have an MRI scheduled until after this second round of chemo).  They are most likely checking to see if there is any tumor progression that is causing the worsening of the symptoms.  If that is the case, they will most likely not proceed with this round of chemo because they wouldn’t want to subject Isabella to the severe effects of the chemo with little to no benefit.  If the tumor does show at least stable, then we will proceed with the treatment.

One bright side to all this is that Isabella will be able to spend a couple more days at school, which she really enjoys.  The picture below shows Isabella and Nathaniel taking a walk with Grandma and Grandpa.

Christmas Highlights

Isabella’s white counts have climbed so she’s no longer neutropenic (low white counts that make her susceptible to infections), but her platelets count is low.  This means we’ll have to go into the City tomorrow for a platelet infusion, but that should be it for this round.  We’ll have to discuss with our oncologist what the next steps are, but it won’t be for another week or two.

In other news, the snow came a day late to give us a white Christmas.  Oh well.  That didn’t stop us from having a great Christmas.  Here are a bunch of pictures and a video from the last couple of days.  Click on the picture to see a larger view.

Annalise in front of the festively lit Empire State Building.

Isabella laughs as she wears her reindeer antlers.

Annalise and Isabella help decorate the door with snowflakes.

Here we are for our traditional Christmas Eve dinner of pierogies, fish sticks and green beans substituting for peas.

Even though we didn’t have any time to shop, Santa came by with lots of gifts for the kids.  This also included some handmade, custom stockings for everyone in the family!

Nathaniel wears his new tool belt.

Isabella poses with her favorite new toy, a remote control walking puppy she named Snowflake.

Annalise made this cool ornament at school.  It has a transparent picture of her inside the ornament.

Nathaniel and Isabella venture out into the snow before the blizzard got really bad!

Annalise and Nathaniel pose by some of the large snow piles in our yard.

And what else are you going to do with all of that snow?  Well build a snow fort, of course!  Here’s a video tour of our snow fort!

Merry Christmas and a Happy New Year from our family to yours!

Merry Christmas!

Thanks to everyone for all the wonderful support you’ve shown.  I hope that you are all able to spend time with your loved ones and enjoy this blessed time with each other.  From our family to yours, we wish you a very merry Christmas and a happy and healthy New Year!

Going Home Today!

Isabella's counts have crept up enough for us to be discharged today! They "topped off" her platelets this morning and will be boosting her with some antibiotics soon and I will be driving in to bring her home shortly. The antibiotics will continue at home for a few days while she still has low white counts. We'll also go back into the City tomorrow for a blood transfusion (for low red cells), but at least we'll all be able to sleep in our own beds tonight!

Now the tricky part is to prevent her from spiking a fever or getting another infection during the holidays.

 

Update – 6:56pm

So we’re all home and settled in.  Here is a picture of Isabella from the hospital last night after she heard she was going home today.  Up until then, she hadn’t had much reason to smile so this was nice to catch.

Here we are at home playing Scrabble.

Update from the Hospital

So we are now through day 4 in the hospital. Isabella's blood culture test reveals that she does not have a bacterial infection, meaning that we do not have to do a standard course of 10 days of antibiotics. We're not sure what was causing her fevers, but it was most likely viral, and thankfully, she hasn't spiked a fever in over a day now. So our doctors now tell us that in order for us to be discharged, Isabella's white cell counts need to go up (otherwise, she would most likely get infected by something and be back again). The good news here is that her counts are creeping up ever so slightly, so we're hoping to only be here in the hospital for a couple more days.

Up until today, Isabella hadn't been eating much. She hasn't been vomiting, but she has felt nauseous and had little to no appetite. So Julianne and I decided that we would let her eat whatever she wants, regardless of the low-carb diet. Today, Isabella ate a good amount, including pancakes, pizza, and lugaw (which is a Filipino rice soup that my mom made), which we were encouraged by.

Unfortunately, we are noticing some worrisome symptoms from Isabella. She continues to be very weak physically and she can only walk a few steps at a time. She's also having problems chewing some foods so we're sticking with some of the softer foods. She is also having problems talking and communicating, and she's displaying much frustration from not being able to communicate how she is used to. Now we're not 100% sure whether these symptoms are due to chemo or to tumor progression - our doctors say it may be due to either and we just have to wait a few days to see if the symptoms subside.

So for now, we're still taking things one day at a time and we are looking forward to being home soon.

Save Sebastian

I recently wrote about our neighbor, one of Isabella’s classmates, who is also battling cancer.  He was diagnosed with leukemia and requires a bone marrow transplant, but unfortunately, none of his family members are matches.  This Sunday, December 19, they will be holding a bone marrow drive in Norwalk, CT.  What better gift to give this holiday season than a gift that can potentially save a life?  The process is simple, all they do is swab your cheek, and takes just a few minutes.

If you can’t attend this drive, visit the DMKS web site where you can find a local donor drive or request a kit where you can swab yourself and send it back in.

Here is the announcement.

Help Save Sebastian and Others!

Date:

Sun Dec 19, 2010

- Norwalk, CT

Sebastian is a 7 year old who has a long list of his favorite things. He loves the color red, the Wii, hot cooked shrimp, cookies and ice cream; Lady Ga Ga, the Yankees, chocolate cake, lollipops, monster trucks; fireworks, soccer and baseball. Most of all Sebastian loves his Daddy. He wants to grow up to be just like his father, but Sebastian has leukemia, and his life may be cut short unless he receives a transplant.

“My little boy is tough. Nothing stops him. He gets his fingers pricked a hundred times, must swallow pills every day, endure painful biopsies, but he does not complain or cry. He has the will to fight in him!” says Sebastian’s father. “My family prays and prays for a match.”

BECOME A LIFESAVER!
BONE MARROW DONOR DRIVE:
St. Thomas the Apostles Parish
203 East Avenue
Sunday, December 19th
9:00 am - 3:00 pm
At the gymnasium located in the parish

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.