February 23, 2017 – 7 years 111 days

When you lose a child, your life becomes a series of numbers, times of day, songs, and dates.  I don’t really know why we do it to ourselves.  Why do we look at the clock or the calendar and say things like, “this day in 2010”.  It’s just plain torture.  It’s especially bad around her passing day because the memories are so vivid that you can still recall every day of that month.  How she looked, what she said, who came to visit or even the haircut you got that month, which you always regretted.  Why would I leave her to do that?  The haircut always haunted me.

How old was Isabella when she died is a question I get all the time.  My immediate answer, or the one you will hear out of my mouth is 7.  But in my head I am saying 7 years and 111 days.  She wasn’t just 7 because of course like any tortured Mother, I remember the day she turned 7.  We had a full day planned to celebrate on that day, but we got a call from Dr. Kaplan who told us that she was in need of blood and platelets.  I had a small breakdown in the clinic about it because I was tired of having special days ruined for her.  She of course was clueless to missing out because her whole life was about missing out.  The staff decorated her transfusion room for her and got her cake, balloons and gifts.  It was sweet of them and I honestly think they did it more for me.

While we were there, we also got a call from NYC and were surprised to hear that one of Isabella’s four bone marrows tested positive for neuroblastoma.  This came out of left field for us because we thought she would be squeaky clean after her third MIBG treatment.  The amount they found was very minimal, but in the world of cancer, sometimes that is what will kill you.  This small evidence of disease was ultimately the cells that exploded and eventually took her life.  Go figure, the start of her death started on her 7th birthday.

Of course in Isabella style, we did have a wonderful birthday weekend.  We went to Great Wolf Lodge with her bestie Soleil and had a horse party with all her friends.  She asked for Target gift cards for her presents and then proceeded to spend every single one of them buying toys to replenish the oncology floor playroom.  Even on her last birthday, she was still giving.

That was her 7th birthday.  The good, the bad and the ugly.  She lived 111 more days.

Phia, 7 years 111 days

I saw it coming as I took a glimpse into my February calendar.  There it was.  February 23, 2017.  This was the day that Sophia would be 7 years, 111 days old.  This is also the day that Isabella would officially become my youngest child and daughter.

Of course my natural way is to push things down and try not to think about them.  But grief has a way of sneaking up on you.  Even this morning, the day before Isabella’s birthday, I find myself being a total bitch.  I’m overtired.  I’m cranky.  I want to be alone.  I’m snapping at my kids and want nothing to do with seeing Stuart.  I know what it is all about, I am just trying to deny it.

So I go about the days leading up to it and walk right into a memory a week before the dreaded day.  I had been trying to get back in the gym and my body was hurting.  I decide to take a nice relaxing soak in the tub.  We all know as mothers that kids hear that bath running from miles away.  Within 2 minutes, Sophia is stripped down naked and about to do a cannonball into the tub with me.   She is squirmy as usual and I can’t even get a word in edgewise.  Sophia is non-stop energy and it baffles me how she can be at a 12 all day every day.  She is making a Mohawk in her hair with bubbles and is putting a Santa beard on me all while telling me about her boyfriend and how he tried to kiss her on the playground.  I try to be present but I find my mind wandering as I look at her.

June 21, 2012 (One week before she passed)

“The days seem so long and often I ask myself, what day is it?  I seriously don’t know if it’s Sunday or Thursday.  The majority of my days are spent in the bed with Isabella.  I try to lay with her in the morning until around 4 each day.  We don’t do much in the bed.  Occasional meds, back rubs, small conversation.  I’ll get her up and put her in the bath with me to make sure she at least feels clean every day.  But with each bath, I look at this girl and can barely see my Isabella in there.  Her stomach is sunken, ribs showing every bone.  Her shoulders stick out like they want to punch through the skin and her spine shows each vertebrae.  I can no longer carry her with my hand on her back because it just upsets me too much.  

While we are all trying to come to peace with things, Grant is beginning to struggle.  He is having moments of tears that come from just seeing a picture of them together.  Nightmares, night sweats and the constant need to be right next to me, letting me know that he is grieving.  He misses her.  He comes and gives her hugs when he leaves and constantly says, “tell Isabella I love her”.  Even today he came in and sat next to the tub while Isabella and I took a bath.  Just talking about whatever came in his head… but it just felt normal to him for a minute.  They talk as if nothing is going on… he tells her that her hair is coming in good, or they talk about how library day will work next year at Marvin, what happens when people have surgery, his new Spider-man book…whatever.  He just wants to be there.  I’m amazed he doesn’t mention the look of the body he sees in the water…he notices it I’m sure.”

Just a couple of days later, we took our last bath together.  I laid her on top of me and not much was said.  I knew she wanted to talk to me but it was hard for her.  The words that were coming out of her mouth weren’t making sense.  She was trying to talk to me about a bunny or Grant but then said, “Mommy, that didn’t make sense did it.”  By this point the cancer was in her brain and it was taking over quickly.  It was the last conversation we had.  For the next 24 hours she was still there in her mind but this too would go soon.

June 26, 2012 (Two days before she passed.)

Her heartbeat is slowing down but sounding different because her heart is working harder.  Her oxygen is slowing down a bit too.  Her breathing is slowing down so much in fact that I just stare at her.  She will take a breath and then it will be so long until the next one that I find myself holding my breath until she takes one again.  She sleeps most of the day and gives me small glimpses of what is in her mind.  I lay with her so quiet and still and listen to the things that she says in her sleep.  She asks me if I see things or tells someone to wait on Mommy.  She will say Grant’s name but then it wakes her and she says that she was just dreaming.  She flinches and smiles, makes gestures with her hands and squeezes my hand softly.  It’s like she is talking to someone.  But the occasional smile let’s me know that it is not a conversation that scares her or makes her sad.  Each night Stuart and I snuggle in beside her and tell her things just in case she is not with us when we wake up.  We have been told by hospice that we are lucky.  She is relaxed, comfortable and not in pain.  

Two days later she died.  She died in the morning on June 28th at the age of 7 years, 111 days.

Phia, 7 years 111 days

So on February 23rd, 2017 I crawled into bed with my now oldest daughter Sophia.  We snuggled for a bit and then she got a piggyback ride downstairs as she got ready for school.  I dropped her off and continued to torture myself throughout the day.  I talked to my Mom on the phone and cried.  Then I sat down and watched “This is Us” and bawled my eyes out as the father I loved on the show died from cancer.  I visited Isabella’s site briefly.  I sat in the sun quietly and waited for Sophia to get off the bus.  I gave her a big hug and told her that today she was 7 years and 111 days old.  She shrugged me off as usual.

I took her for a haircut where the stylist walked right into my nightmare.  She asked Sophia how old she was, to which she responded “7 years and 111 days”.  The stylist laughed at how cute she was.  I knew when she asked her if she had any brothers or sisters, that we were in for it.  Sophia of course responded telling her, “I have a brother Grant and a sister Isabella who died of cancer.”  All this while zoned into watching Big Hero 6 on the TV screen.  The stylist turned and looked at me.  “Oh my gosh!  I’m so sorry.  How old was she?”

“7 years and 111 days.”  I replied.  I then proceed to weep on the couch of Pigtails and Crewcuts.  Welcome to my f’d up day lady.

Phia, 7 Years 111 days

I took Sophia back and we walked on the trail together, holding hands and laughing.  I would catch myself looking down at our hands together and thinking how unbelievably similar that view was.  Her hands are identical to Isabella’s yet so much is different.  She is healthy and running barefoot ahead of me in her purple dress with her blonde hair bouncing up and down.  I am looking at a child that Isabella should have been on that day.   Happy, cancer free, without a care in the world.

But instead she is gone and Sophia is now older than Isabella.  I am thankful this day is behind us and can thankfully say that I don’t have another day on the calendar for awhile that I’m scared of.  It’s crazy to think she would be 12 years old today.  I can’t even imagine.  But, as Sophia ages each day – it gives me a small glimpse into a piece of who she would have been on that day in history too.  I always say Sophia is a gift from Isabella.  Her little sister who has in one day, all of sudden, become her big sister too.

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MIBG Treatment Room Coming Soon!

We can’t think of a better way to celebrate Isabella’s birthday eve. Today ISF officially committed to bringing an MIBG treatment room home to Levine Children’s Hospital. Happy birthday sweet girl… You are sorely missed but still changing the world and helping us move the needle in your honor.

So raising one million dollars is a HUGE goal. But we have one HUGE advancement that we are trying to bring to local kids. Isabella received MIBG therapy in Philadelphia when she was filled with cancer and it destroyed it all. We want to bring this treatment to Charlotte and new promising trials are testing the effectiveness of this treatment earlier in the diagnosis. This could be a game changer for our local kids and we are excited to make this happen. Did we mention that it has low side effects and is pain free? Yep.

We will be educating our supporters all year long about MIBG and we hope you will help make this happen.

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