Maggie’s Story

Our dear Maggie, 2 yrs old, lost her battle with cancer 10/14/2009--our 15th anniversary-she won eternal peace.  She was diagnosed (6/09) with brain cancer (ATRT). She endured 2 rounds of chemo therapy and 6 weeks of radiation- 3 1/2 months inpatient. We love her dearly and cherished every moment we had with her. She fought bravely to the end.

In late April or early May, Maggie started falling a lot.  That isn't unusual for a toddler but i noticed after she fell she was cautious.
She stopped "toddling" and was walking--cautiously.  An alarm bell went off but knew that the doctor would look at her and say she is fine (that is exactly what happened when i finally went in with 2-3 concerns).  So, i kept an eye on her closely.  One day i noticed she was turning her head slowly--cautiously.  Alarm bell again but it was only once and then she seemed normal.  Then, one morning she was walking down the hall after waking up and one foot turned inward.  I went straight to the doctor with 3 symptoms.  Nothing.  5 office visits (ear infection, throat infection, constipation) and she was even worse.  2 ER visits and she was worse--not eating or drinking, not walking or sitting upright and her chin was thrust into the air to get comfortable----i was very concerned about something neurological but kept hearing it was symptoms of other things.  We finally went to the ER June 10th (3rd time) determined to get a CAT scan --had been declined to receive one the first 2 times--said it was unnecesary---"too invasive"--huh? that is why we went to the be invaded...we already had 5 office visits that are non-invasive and that didn't help ER doctor recognized the neuorlogical signs and ordered a cat scan which showed her tumor(s) in her brain stem. 

she endured 2 rounds of chemo and 6 weeks of radiation (over 3 months inpatient) which was very hard on her 2 year old body but her cancer gave us no good options.  Her tumors  responded well to the treatment---they were shrinking and some were just plain gone--but there was some concern about relapse btwn chemo and radiation. She was home resting awaiting an MRI for a few weeks.

one morning she started breathing up high..with her chest only --that was odd...we kept and eye on it and showed the doctor the next day...they said there was nothing to worry about really....just maybe the steroids or thurs we were very concerned...they took some blood work and found her electrolights and others things out of whack...okay..fine...fix that.. but while fixing that they found that her cancer had spread to her abdomen and was still present in her spinal fluid..we knew hospice was next....we lost our fight with cancer..

maggie was always a very healthy child and had quite a high tolerance for pain (didn't cry when she got shots).  she had only one fever that i can recall and no ear infections----just colds that she caught from others.  oh, and chick pox that she got from me. 

she loves to paint, play with side walk chalk, go to the playground, go for walks outside, throw rocks into the pond nearby, climb on the dirt/rock piles in the neighborhood, help me in the garden moving rocks and such, put lotion on her hands, mess with anything anyone else has, operate any electronic equipment we don't want her touching,  play with her brothers, pretty much anything that involves her brothers---music, chasing them, dancing with them, jumping on the beds with them--just being with them as much as she can.

Maggie loves to count and look for numbers and letters on houses and mailboxes.  We play with letters a lot.  She loves trying to play ben's drums and jake's trumpet.  she loves shoes--loves them.  and hats too.  she can sort the laundry better than the boys and closes the door behind herself (again, better than the grown boys). 

she loves baths---she would take 3 a day if i let her and i often did. 

since a very small child she tried to do whatever the boys were doing (at 6 months old wanted to run around with swords like they were).

We love her dearly and appreciate any prayers for her eternal peace.

maggie was fighting to stay with us.
in the morning of oct 14th, our 15th anniversary, she was breathing slowly but not with difficulty.  jake came in that morning and said bye to her on his way to school...i told her i needed to go get my robe and i'd be right back to take her downstairs.....she peeked at me, i teased her---told her i saw her looking at me and knew she was awake.... and walked away a moment--to my closet and back---just several steps.  when i returned, she was gone.  she didn't want me to see her last breath...she knew i would want her to stay...she knew the house would be full of people keeping her here...she went quickly and peacefully.  i thank her for that but i didn't want her to go.  she was right. 

she is a wonderful child--selfless in the end.
we miss her more than we could have imagined.
thank you for visiting and praying for her, us and now praying to her...

Latest Journal Update

"I think you're my new favorite person of all time"

So I haven't logged in ages ....since bens bday in February

Jake and Ben finished their coursework for the year with great grades

Mother's Day was a wonderful celebration this year ...and so was my bday in June

Spent tons of time with friends ...the unexpected invite to a play and dinner was awesome

and then jake .came to town ...then Ben returned from a religious retreat ...and my mom and brother Paul joined us

We tried out a fancy place in dtown which was a huge success

But shortly after that ...on July 5th of jakes high school friends, Steve, died in a freak accident ...we are so very heartbroken for his family and friends ...I couldn't hug them all enough to give comfort nor prepare them enough for the path of grieving ...i ask for many prayers for Steve's family for many years to come ...the goodbye is something never "gotten over"

I'm writing today bc I went to a prayer service outside a planned parenthood clinic in philly ....first time ever doing that kind of thing ....I don't see myself as an activist and don't like confrontations

But i went ....

First of all ....

My friend who invited me didn't give me enough notice for me to be able to chicken out or come up with a fake excuse

And second ...I decided to go prepared to feed homeless along our route so if the rally were scary or troublesome least I'd do some good for the day ....

Water bottles soft cereal bars and trail mix packets went in a bag plus I made sure I had small (ish) bills to give.....

Feet after parking we saw homeless people so I knew I'd be able to give love and kindness to someone at some point ....

Yet, still when arriving at the site ....

I felt very uneasy until I saw a police officer ...with a sidearm ....I felt safer and told myself that I'd thank her at the end of the event bc her presence changed my comfort level

There were several moving speakers but my favorite part was praying and singing amazing grace

I feel strongly after losing Maggie that these young women don't know the goodbye they are choosing I will pray for them out of love ...not hate or judgment

After the event I walked over to thank the officer for her presence and keeping the peace .....but before I could finish my sentence , she explained that she is a catholic but has a calling to serve the public as an officer and has a hard time listening to the speakers while needing to remain neutral and scanning for "trouble" .....i just told her that i have always been afraid to attend a prayer rally bc of possible trouble but felt at ease bc she was there ...I swear she almost cried and I can't recall if I hugged her ...I wanted to ...but can you hug a cop? I know I shook her hand many times and stood shocked and silent when she told me "you don't know what you've done" ....she just kept thanking me! All I did was thank HER!

But obviously it was much more ....I think she thought she was just there to protect the staff at the clinic from crazy people

I really needed to feel safe too

Safe to pray on that corner

Safe to sing a song of love and hope

It was surreal to give her something she needed and i didn't even know I was ....

Anyway after the event we walked not even a block for lunch

One of the staff members (an African American young woman named Mia ) saw the girls pro-life signs and asked questions about how she could get involved in helping to save her community too

She said she is aware these clinics target minority communities and end the lives of more minorities than anyone is willing to admit

It was fascinating to hear her questions about how to get involved

To hear her admiration for the teens I was with for being brave to take a stand for love of others and sharing that when she saw them ...she wondered "who raised them to have such love and faith? Who helped them know how to do this?" So I introduced her to my friend whose daughter organized it all ....and we said "us!" Vainly I might add then humbly admitted "with many imperfections along the way "

It was inspirational and filled me with hope for our future (real hope) ...

It was truly a blessing to be able to witness

her passion for her faith and desire to share it on a larger platform than her 2 Instagram accts (which we all wrote down and immediately followed her!)

Amazingly she is already very active socially in her community as a big sister to lots of the girls in her neighborhood

So she is already doing Gods work but she said working so close to the clinic ....a lot of people around it want it closed'll never hear that from the media ....

As we talked more she got nervous her boss would be upset ....then ....her boss came over and asked us all to pose with Mia for a pic!!!!

It was truly a lesson in "race relations" for America! We were people who have faith and want to live it matter the color of our skin or the color of someone else's skin philly!!!!!!! Wait, I thought that didn't exist ....well it does

And Mia even said she feels alone and like a freak bc she has her faith ....I told her you aren't a freak nor alone

We're here too

We just have to find each other

It was lovely

We hugged her many times

And feet after leaving the restaurant we encountered 2 more homeless and distributed the rest of our food and money til it was gone

I'm not sure which of all this is the highlight ...

But my journal title will end the day ....while sharing my day with Ben and running an errand with him

A song came on that I didn't know .....

I anticipated a certain "beat" and it didn't come to fruition ....much to bens amusement bc I looked like a total weirdo gyrating to a non-existent beat and as he laughed he said "I think you're my new favorite person of all time " ....of course he now says he didn't say "of all time" ...shhhh don't tell him I left it that way ....a mom can wish can't she?

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1 Comment

Sarah Gouzoules
By Sarah Gouzoules
Thinking of you all today and remembering Maggie!! Happy Anniversary!!