Two Weeks Later

NOTE:  I original wrote this two weeks ago, but didn't feel like posting it at the time.  I do that from time to time.  Sometimes I end up posting things after a few days to brew, and sometimes I never end up posting it.  This one brewed for a couple weeks.

I can’t believe that it’s been (almost) two weeks since Isabella died.  Part of me thinks that I’m going to wake up at any minute and realize this has all been a bad dream.  But the rational side of me knows it’s all too true.

It’s been pretty tough trying to adjust to this new chapter in our life.  I still walk by her bed and expect to see her laying there, and I just want to walk over and run my fingers through her hair just one more time.  When we were preparing the seats for the cemetery, I realized that we would only need four seats instead of the five that I am so accustomed to.  Today, I was answering a survey over the phone and when they asked how many dependents I had, I had to stop and think and change my answer mid-stream (then try to compose myself to finish the survey).  I also had to fill out the forms to close out her college education funds which we’ve been contributing to since she was born.  It makes me sad that her true brilliance will never be known to us.

Also today, the hospice company came over and picked up all the medical equipment from our house.  Although it’s nice that our house no longer looks like a wing of the hospital, it feels like we’re slowly just trying to forget or erase Isabella from our memory.  But of course that couldn’t be further from the truth, but that’s how it feels.  That’s why I felt bad taking Isabella’s car seats out of the cars, or taking her wheelchair out of the car for the last time and storing it away.  We won’t need those again.

When we visit Isabella’s grave, I still can’t believe that our little girl is in a box just a few feet below my own feet.  Alone.  In darkness.  Forever.  If I could, I’d dig up her casket right there just to give her another hug.  Just to tell her how sorry I am that she had to go through so much pain and suffering.  Pain and suffering that she didn’t deserve.

I think the worst part is the guilt I feel.  It’s not the typical survivor’s guilt, although there is some of that.  The guilt I feel is because a part of me is relieved.  Relieved that not only is Isabella no longer suffering, but relieved that we no longer have to deal with a sick child.  Now admittedly, Julianne carried the large portion of the burden of caring for Isabella, but there was still such a huge emotional and physical strain and stress of having a dying child.  But now that strain and stress are gone, and I am relieved.  Don’t get me wrong.  I’d trade it all back in a second and deal with the stress if Isabella could still be alive.  But I still feel guilty for feeling relieved, because shouldn’t I be mourning?  Shouldn’t I be more sad?

I know it’s only been two weeks and there’s a lot of time and a lot of emotions and a lot of healing left.  But I do feel that we have an advantage because we’ve had plenty of time, almost four years, to prepare for Isabella’s death.  As I mentioned at her funeral mass, practically every day since Isabella was diagnosed, I would think about her eulogy and what I would say, but still hoping that I would never need it.  We were able to be with Isabella when she died and said goodbye on our terms, in our house.  I can’t imagine what it is like for those parents who’ve had to bury their children after a sudden and tragic death, without having that closure.

I know that it’s supposed to get better over time, but a part of me doesn’t want to let go, doesn’t want to forget the pain and hurt because when that happens, a little bit of Isabella will also disappear.

Thanks for reading.

#IsabellasPurpleFriday

So Annalise told me that she organized something on Instagram where she asked all of her friends to wear purple today in honor of Isabella.  She got a really nice response, and I’m really proud of her to do that.  So if you’re on Instagram, check out #IsabellasPurpleFriday to see all the pictures.

Waterbugs and Dragonflies

It’s difficult to try and describe death and the transition from life to death to children.  Julianne found the parable below which beautifully describes this.  We read it to Isabella and the kids on the night she died, and I also read it at Isabella’s funeral mass.  As I mentioned at the mass, the story has provided us comfort and hopefully, it does so for you.

As a side note, today we went to visit Isabella’s grave.  While we were there, we saw a bunch of dragonflies flying around, and I couldn’t help but think of this story.

Waterbugs and Dragonflies

by Doris Stickney

Down below the surface of a quiet pond lived a little colony of water bugs. They were a happy colony, living far away from the sun. For many months they were very busy, scurrying over the soft mud on the bottom of the pond. They did notice that every once in a while one of their colony seemed to lose interest in going about with its friends. Clinging to the stem of a pond lily, it gradually moved out of sight and was seen no more.

“Look!” said one of the water bugs to another. “One of our colony is climbing up the lily stalk. Where do you suppose she is going?” Up, up, up it went slowly. Even as they watched, the water bug disappeared from sight. Its friends waited and waited but it didn’t return. “That’s funny!” said one water bug to another. “Wasn’t she happy here?” asked a second water bug. “Where do you suppose she went?” wondered a third. No one had an answer. They were greatly puzzled.

Finally one of the water bugs, a leader in the colony, gathered its friends together. “I have an idea. The next one of us who climbs up the lily stalk must promise to come back and tell us where he or she went and why.” “We promise,” they said solemnly.

One spring day, not long after, the very water bug who had suggested the plan found himself climbing up the lily stalk. Up, up, up he went. Before he knew what was happening, he had broken through the surface of the water, and fallen onto the broad, green lily pad above.

When he awoke, he looked about with surprise. He couldn’t believe what he saw. A startling change had come to his old body. His movement revealed four silver wings and a long tail. Even as he struggled, he felt an impulse to move his wings. The warmth of the sun soon dried the moisture from the new body. He moved his wings again and suddenly found himself up above
the water. He had become a dragonfly.

Swooping and dipping in great curves, he flew through the air. He felt exhilarated in the new atmosphere. By and by, the new dragonfly lighted happily on a lily pad to rest. Then it was that he chanced to look below to the bottom of the pond. Why, he was right above his old friends, the water bugs! There they were, scurrying about, just as he had been doing some time before. Then the dragonfly remembered the promise: “The next one of us who climbs up the lily stalk will come back and tell where he or she went and why.”

Without thinking, the dragonfly darted down. Suddenly he hit the surface of the water and bounced away. Now that he was a dragonfly, he could no longer go into the water. “I can’t return!” he said in dismay. “At least I tried, but I can’t keep my promise. Even if I could go back, not one of the water bugs would know me in my new body. I guess I’ll just have to wait until they become dragonflies too. Then they’ll understand what happened to me, and where I went.” And the dragonfly winged off happily into its wonderful new world of sun and air.

A Sea of Color to Bid Farewell

Julianne and I are extremely grateful and humbled by the incredible turnout that we had for Isabella’s wake and funeral.  We had visitors from all over the country come by to say their final goodbyes to our sunshine girl.  We were standing and greeting visitors at the wake from start to finish (over four hours!), and although our feet and backs ached afterwards, it was well worth speaking with everyone.

We are also glad that we asked everyone to dress in bright colors because it was really neat to see the sea of color at both the wake and the funeral mass.  I’m sure Isabella was looking down and appreciated the colors that we all wore – so much so that Isabella treated us to a double rainbow yesterday!

Isabella treats us to a double rainbow at the Marvin family picnic on 9/30/12

For those of you that missed the services, here are a couple pictures and a video of the lantern launch that we did at the cemetery to honor Isabella.

We handed out these butterflies to all the visitors

Isabella was surrounded by lots of pretty colors and flowers

Nathaniel sits and watches Isabella’s video.  We also had a bunch of posters with pictures of Isabella throughout her life.

We displayed these two pictures of Isabella.  One was when she was bald and going through treatments and the other while she was in remission.

Isabella’s art work greets the kids at the children’s sign in table.

Our family poses for one last time with Isabella.

Isabella being brought into the church before the funeral.

Annalise says farewell to Isabella, Hunger Games style!

Friends and family lay their flowers on Isabella’s casket.

We spruced up Isabella’s temporary marker with some extra flowers.

Special thanks to the Catino family for getting us the lanterns on such short notice!

Do You Have Pictures of Isabella?

If you do, please click the link below to upload them to a shared folder that I created.  These photos can be from this weeks services or from anytime.  I’m sure there are plenty of photos of Isabella that we haven’t seen and we’d love to see them.

http://sdrv.ms/R5CWKi

September 21, 2012

Author’s note:  This blog post will describe Isabella’s last days.  It will be lengthy and portions will be difficult to write (and read).  Some content may be more personal than I would normally put (especially some pictures that may be upsetting to some).  But just as with the rest of the blog, I write not just to keep you informed, but for myself in that it is both therapeutic and allows me to not forget.

Because of this, I decided to split this post.  To read the entire post, click the title above.

Isabella’s Video

Here is the video that we played at Isabella’s wake displaying lots of highlights from her life.  It’s pretty lengthy at an hour and ten minutes, so you may want to grab some popcorn (and some tissues!)  Youtube may also take it down at any time since it does contain a bunch of commercial music.

Isabella Laid To Rest

Today, we laid our little Isabella to rest, amid a sea of bright and beautiful colors.  It has been an utterly exhausting week.  Give me a couple days and I’ll post something about the services.  In the meantime, enjoy this photo of a lantern that we lit at the cemetery in her honor.

UPDATED: Wake and Funeral Arrangements

Update:  Reception information added below.

There can’t be much worse things to do than to plan the funeral for your child.  As Julianne and I sat with the funeral director, I thought how unnatural it is to be looking at a casket so small.  And yet, there was a conflicting feeling I had of how beautiful the casket is and how the dress that we have picked out for Isabella would look so nice in it. 

As we toured the cemetery, again, I had conflicting and polarizing feelings as we tried to pick the perfect spot where Isabella would spend forever.  The lack of sleep and appetite caused waves of nausea and I just wanted to go home.  I just wanted to hug Isabella one more time.

Anyway, here is what we finally settled on.  I do hope that as many people as possible can come out and help us remember Isabella.

I should also note that we are encouraging everyone to dress in bright and vivid colors to the activities.  As you know, Isabella loved the rainbow’s colors (especially purple), so let’s shower her with colors.

Wake

The wake will be held at Collins Funeral Home, 92 East Avenue, Norwalk, CT on Wednesday, September 26 from 4:00pm to 8:00pm.  I would like to add that we are planning an open casket because we wanted everyone to see how beautiful Isabella is for one last time.  Parents may want to prepare their children.

Map:  http://goo.gl/maps/g7bQ3

Funeral

The funeral mass will be held at St. Thomas the Apostle Church, 203 East Avenue, Norwalk, CT on Thursday, September 27 at 10:00am.  This was the church where Isabella was baptized and had her first communion.

Map:  http://goo.gl/maps/B0JUJ

Burial

The burial will immediately follow the mass at Fairfield Memorial Park, 230 Oaklawn Avenue, Stamford, CT.  Roneil’s dad, grandmother, grandfather, and uncle are also buried here so it’ll be nice that she’ll be with other family.

Map:  http://goo.gl/maps/b3BB0

Reception

A family friend has graciously offered their house to host the reception, which will immediately follow the burial.  The reception will be held at 61 Cove Ave., Norwalk, CT.  All are welcome.

Map:  http://goo.gl/maps/uNOoB

“We Have All Been Touched”

Author’s Note: We are overwhelmed by the outpouring of support from everyone.  Please check back over the weekend for details on services for Isabella.  In the meantime, please enjoy the following post which I was planning on posting last night.

We heard from Marvin school officials that they really wanted to do something for Pediatric Cancer Awareness month to raise awareness for pediatric cancer and to also honor Isabella in some way (ed. note: They had already planned to do something for Isabella before she passed away.).  To raise awareness, they distributed gold ribbon pins to everyone and they had all the children color a gold ribbon and provide examples of Courage, Caring, Hope, and Love.  This was all part of the “We Have All Been Touched” campaign.

To honor Isabella, the school is selling purple butterflies (Isabella’s favorite color, of course!), which you can customize any way you want and these would then be hung all over the school.  Proceeds from the sale will be donated to help fund research to find a cure for pediatric cancer.

Last night, Marvin had their open house night and it was our first chance to visit the school and we also decided to bring Isabella.  When we got to the school, we were not prepared to see the amazing display of gold ribbons and purple butterflies that decorated the hallways.  I wish we had the time to sit and read every one of the children’s writings because many of them were poignant, insightful, and downright sweet.  Some brought us to tears.

We are forever grateful to the Marvin community which has provided so much support throughout the years.

Goodbye Isabella

At 5:15pm today, Isabella took her last breath. She died comfortably, surrounded by her family and lots of love. May an army of angels lead her into heaven.

Please Pray for Isabella

She is not doing well right now. Please pray for her and us that we have the strength to get through this.

What Makes You Beautiful

As part of pediatric cancer awareness month, the Aflac Cancer Center in Atlanta created the video below. It includes a bunch of kids, nurses and doctors singing to One Direction's "What Makes You Beautiful".

Pass it on! :)

Pediatric Cancer Awareness Month

Nathaniel gives his big sister a kiss.

Faithful readers of Isabella’s Fight are painfully aware of pediatric cancer and the real effects that it has on a family.  Unfortunately, overall awareness is relatively low, especially compared with other adult cancers.  Fortunately, this summer, President Obama signed a bill that gives the pharmaceuticals some incentives to develop some newer and better treatments for our children.  What they develop remains to be seen, but it’s an improvement, considering that a measly 1% of research goes to children, which is disgusting.

Please take a minute to review some of the childhood cancer facts in the poster below (borrowed from Gold: The New Pink Facebook page).  Four years ago, we never thought we’d be in this situation.  Cancer was what happened to other people.  But here we are.

Back to School - 2012

I remember when I was a kid, back to school day was always a dreadful day which meant the end of the carefree summer days.  No more playing outside until it was dark or staying up late.  It meant getting up early and doing homework.  For some odd reason, maybe it’s Julianne’s influence on them, but the kids actually have been looking forward to going back to school, which I guess is a good thing.  In Nathaniel’s case, he’s super excited since he’s starting kindergarten, so I’ll give him a pass this year. (Of course, it’s in the back of my mind that Isabella was diagnosed two months after she started kindergarten….)

So in recent years, back to school day has been a pretty exciting day in the Icatar household.  But this year, the day will be bittersweet.  Although Nathaniel’s enthusiasm and excitement over riding the bus for the first time will be unmatched, Isabella will not be able to join him or Annalise in going to school.

Isabella has been assigned a teacher, but she will probably never spend another day at school.  Oh she may get a visit to the classroom for a special day or two, but she won’t get to participate in class or socialize with her friends.

I was looking at pictures from the previous years’ back to schools, and just seeing the dramatic decline from last year is shocking.  Where last year Isabella was able to walk and talk (albeit with a little difficulty), this year Isabella can’t move any part of her body.  Isabella can also no longer eat on her own, so all of her nutrition is pushed through a tube that goes in her nose and into her stomach.  We haven’t heard her speak in months or smile or laugh in weeks.  Her only form of communication now is she will open her eyes a little wider to answer “yes” to a question, and even in recent days, sometimes she doesn’t answer.  At times, she still struggles to breathe, so we need to constantly reposition her and swab out the mucous in her mouth to make sure her airways are optimally cleared.

Yeah, this Fall is a lot different than the previous years.

Here are a couple pictures from some of the back to school days from better times.

Isabella gets on the bus for the first time to go to kindergarten!

Annalise walks Isabella into school for the first day!  This is one of our favorite pictures of all time.

Isabella gets ready to work on her first day in kindergarten.  We didn’t think much about her crooked smile at the time.

This is Isabella’s first day of school for first grade.  She had just completed an intensive course of radiation in Boston, which is why half of her hair is gone, and amazingly only missed the first couple days of school.

Annalise and Isabella look out of the school bus on their way to school.

Annalise, Isabella, and Nathaniel wait at the bus stop.  Isabella started second grade.  Note that even though he’s not going to school yet, Nathaniel insisted on wearing a backpack.

Isabella has a big smile for grandpa as they wait for the bus.

Isabella sits at the bus stop with mommy and grandpa.  Isabella’s classmate, Sebastian, and his sister sit next to them.  Sebastian died earlier this year after his own battle with cancer.

Isabella starts the third grade last year with her friend and aid Kim.

Isabella has a big smile for her third grade teacher.

UPDATED: Isabella’s 9th Birthday!

Updated with today’s pictures!

I really liked what I did last year when I posted a bunch of pictures of Isabella for her 8th birthday, so I thought I would do the same this year.  Although looking at these pictures makes me sad, especially when I look at Isabella’s debilitated state today, I also look back fondly on better days and smile.  So I hope they make you smile and join me in wishing our special girl a happy birthday and that our wish for a cure comes true.

Day 1! August 10, 2003

1st Birthday

2nd Birthday

3rd Birthday

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

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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.

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

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8th Birthday

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Hot Summer Update

Hey everyone.  I hope you're all enjoying your summer.  We've finally gotten some relief from the sweltering heat here in the Northeast.  The past few days weren't easy for Isabella as she had trouble breathing.  We're not sure if it was the heat and humidity, an infection, or maybe a combination of the two, but we've had to put her on the oxygen machine for a couple days.  She's gotten better over the last 24 hours and has been breathing more comfortably, so we're looking to wean her off the oxygen over the next couple days.

Not much else to report.

The Creating Hope Act of 2011 Update

I previously wrote about the Creating Hope Act which provides incentives for pharmaceuticals to research and develop drugs for children’s diseases.  In recent weeks, the House of Representatives and the Senate both passed the Creating Hope Act (as part of a larger bill – the FDA Reauthorization Package), and finally today, President Obama signed the act into law!

So as I mentioned, the Creating Hope Act provides incentives for these drug companies to develop drugs that specifically target diseases in children. These incentives come in the form of vouchers that allow the drug companies to fast-track any other drug the company makes for FDA approval. By fast-tracking the approval process for these other drugs, a company can get drugs to market faster, thus generating revenue sooner (estimates are that a voucher could earn hundreds of millions of dollars).

It’s sad that companies need incentive to save our kids, but that’s the reality of the situation.  Pediatric cancers make up a relatively small percentage of all cancers, so pharmaceuticals can treat more people by targeting adults, which of course means more money.  Again, it’s sad, but that’s the reality.

For a nice, plain-English description of the act, visit the Kids V. Cancer web site, which is a site started by a mother who lost her son to cancer. (http://www.kidsvcancer.org/thecreatinghopeact/).  Also feel free to stop by the Kids V. Cancer Facebook page (http://www.facebook.com/kidsvcancer#!/kidsvcancer) to give them some encouragement in continuing to be advocates for our children in Washington.

So this is the first step.  The next step is for these companies to start working on these drugs.

Here’s a picture of the family relaxing in the pool on our recent long weekend in Maine.  Isabella really enjoyed floating around in the pool, even when an afternoon shower came through the area.

Quick Update

So I have some good news and some bad news to report. The good news is that Isabella has been breathing ok for the last couple of days. After we got back home from the hospital over the weekend, they gave us some oxygen equipment to help her breathe. We used it for a couple of days, but she hasn't needed it lately. This is a good sign since we were concerned that her breathing issues may have been tumor related. The bad news is that some of her blood work shows some critical imbalances. We're hoping that these are related to her recent illness and can be treated, but the worst case scenario is that some of her bodily functions are shutting down. We'll know more in a couple days if stuff balances out again or if we'll need to try other things. But for now, Isabella is resting and breathing comfortably, which is really all we can ask for.

Home from the ER

Thankfully, we are now home from the ER.  We thought that there was a good chance we'd have to stay at the hospital.  The chest X-ray did not show pneumonia and instead the doctors suspect that Isabella has some sort of viral infection, probably the same one that Nathaniel has, who has been sick the last couple of days.  Isabella is now on oxygen at home to help her breathe a little easier.  Since her body is working hard to fight off the viral infection, she has extra mucous in her throat which is making it difficult for her to breath.  In addition, the constant coughing tires her out.  We hope that the extra oxygen will just be temporary until her body can fight off whatever viral infection she has.

And even though Isabella has yet another tube sticking out of her, at least we're home now, after quite a scare earlier today.