With that in mind, today I introduce my first guest post written by super Mama extraordinaire Heather. Four years ago, Heather was one of the first people to welcome me to Boston as I interviewed for my company. I learned two things in those first days in Boston which would stick with me. First, that our office was located on the 26 mile mark of the Boston Marathon course (after asking "oh, does it go by here" as my coworkers excitedly talked about its approach that Spring and then looked at me like I had three heads - yeah, it goes by here). Second, that there was a pretty awesome place in Boston called Dana-Farber. The latter I learned via hearing Heather discuss the cutting edge and life saving treatment her young daughter Paige had received at Dana-Farber and the Jimmy Fund Clinic. I will never forget the day that Heather sat in our office suite and reached for tissues after learning that Paige's routine scans came back questionable. "I thought Paige was cured?" I naively thought to myself. The look on Heather's face was one that no parent should ever have and it will remain forever seared in my memory. It was in that moment that I realized just how devastating this disease is, not only at diagnosis and through treatment but in the ensuing years afterwards. It is not merely a detour from the road you are on, but a complete departure to an entire new road all together. There is no going back. And that's not to say that road is necessarily bad, it's just forever different. So here now, in Heather's own words, is what life is like on that new road. My love and gratitude to Heather for offering to share Paige's story with all of you, and Paige will be among those who I run in honor of on April 18th and always.
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"Five Years Later"
May 3, 2015 marked five-years since we heard those
unfathomable words, “your daughter has cancer”. I still remember like it was
yesterday as well as the weekend before that fateful MRI and ultrasound on
Monday, May 3, 2010 revealing her disease. That weekend, we were going big-girl
bed shopping for Paige because Miss Maya would be arriving in just two short
months and needed the crib to rest her little head. Paige wore a smocked
sunflower dress that day. The Friday before, we had met with an orthopedist who
reviewed her knee x-ray from the previous Thursday which had indicated a lesion
on her left knee. He laid out all the possible scenarios but never focused too
much on cancer. Instead, he scheduled an MRI for that following Monday. We
dragged through that weekend thinking, “there is no way this could be cancer.
Cancer doesn’t happen to little kids… especially our little girl. But what if
it is cancer? What do we do then?” We cried a lot that weekend out of fear and
not knowing. That was our last normal weekend before cancer changed our lives.
Monday came. The MRI was done under sedation which was
terrifying. We had no idea then that our little 22 month old baby girl would be
sedated at least four more times that week and dozens and dozens of times in
the years after that. The hematologist/oncologist met us after Paige recovered
from sedation in the playroom at Tufts. I remember not grasping immediately who
this doctor was and why she was talking to us. I was just looking for MRI
results and not paying attention to the messenger. The messenger wanted to have
an ultrasound done of Paige’s belly so off to radiology we went again. That
beautiful baby girl laid patiently on the ultrasound table with jelly smeared
over her abdomen and a weird “stick” pushing on her tummy while I held her hand
and sang about a million versions of Wheels on the Bus. The tech left the room
to get the head of radiology. He returned, poked her belly with the
stick-thingy while the tech looked at us with sympathetic eyes. He then told us about the mass in her belly
the size of a lemon. No one had said cancer at this point.
We met with the hem/onc doc again after that where she said
she needed to do more tests and we would be admitted. They took blood and did a
biopsy of her knee where the lesion was first discovered. Taking her little
body into that operating room the first time was unbearable. The days started
to fold into each other after that because neither Garrett nor I slept and
there was a boil-water requirement in Boston that week (that isn’t really
relevant but I remember showering at the hospital 7 months pregnant trying not
to get water in my mouth!). I believe it was the next morning when the biopsy
and labs came back that confirmed neuroblastoma. The doc had asked to speak to
us out of Paige’s room near the nurses’ station to give us the news. She used
this strange word “neuroblastoma” and I wrote it down. I still hadn’t heard the
word cancer so I asked the question, “Is this a type of cancer?” Her response:
“Yes, your daughter has cancer.” I asked the question that I didn’t want to
know the answer to after that, “What is her prognosis? What are her chances for
survival?”. After the doc tried to avoid answering, she finally said, “50/50”.
That week at Tufts was horrific. The procedures Paige endured, the information
we had to learn, the choices we had to start making were overwhelming. The
first difficult decision we made was to transition her care to Dana Farber
where she could receive all phases of the COG protocol she was to follow and
where she would have a solid tumor specialist managing her care. Our families,
local adoptive families (those who ‘adopted’ us since we moved to Boston), and
friends were more than incredible from the very beginning and right through the
end of Paige’s treatment. I reflect
often on those people who came out of nowhere offering all different kinds of
support; people who were always close to us as well as those I hadn’t spoken to
in years. It still amazes me.
Every day of Paige’s treatment is vivid in my mind but it
seems like a dream. You know those dreams when you wake up and although images
might be kind of fuzzy but you remember details like smells, feelings and
emotions? That’s what those 15 months are like for me. I thank God every day
that Paige has very little, if any, memory of that experience.
Five years after her diagnosis, Paige is still with us. Are
we blessed? Did we win the gene pool lottery (that’s ironic, isn’t it?)? Was it
something we did to get to this point? I don’t know. I think it’s just luck. I
read a blog recently of a mother who has a child who appears to be “out of the
woods”. She made such a great point in describing how children with serious
medical conditions are never out of the woods; they live in the woods and make
the best of the leafy canopy that covers them from basking fully in the freedom
of the sun. I know there are people who think we are slightly nuts when it
comes to the food we eat and the products in our house. But here’s the thing:
Paige has had more toxins pumped into her little body at age 7 than 10 people
will have in a lifetime. It is our job to limit the other toxins she is exposed
to in her environment because the woods are a freaking scary place and we never
know when one of those long term effects from her aggressive treatment will
manifest into something else. We know all of the potential long-term side
effects that Paige will be managing for the rest of her life and its’ flipping
terrifying. The woods suck but, here we are. It’s our job to do everything we
can to try to prolong the occurrence of those late effects and make her body
strong now to fight later.
Part of living in the woods is living with and managing the
care of a child who needs “a little more”. Paige still has a million doctor
appointments with specialists both on-cycles and off cycles. I often refer to the number of “-gists” that Paige has in her
life and that list continues to grow: oncologists, cardiologists, radiologists,
allergists, nephrologists, pulmonologists and more that I’m “gist”
forgetting. We spend a lot of time with
her different audiologists: one for her actual hearing loss and one for the
hearing aids. Additionally, I spend a lot of time with specialists in her
school as well as her teacher in figuring out the technology to help her hear
better during class and working with the deaf and hard of hearing specialist to
ensure the technology is accurate. Beyond the technology in school, it’s
staying on top of the specifics of her needs in the learning environment and
watching closely for signs of cognitive impairments brought on by the treatment
she endured, not the cancer itself. Her hearing impairment and learning
development alone are consuming enough not to mention all of the organs we must
monitor so closely which is why I don’t have much left to give for all the
normal kid stuff (I’m still taking applications for a wife, if anyone is
interested) and I have given myself a 50% efficacy rate as a “normal” mom.
I received a call from the Cord Blood Registry (CBR) last month
saying that our five years of free cord blood storage (free because of Paige’s
diagnosis) for Maya’s cord blood was ending in July. That also took my breath
away. If it weren’t for Paige’s diagnosis, we never would have considered
banking Maya’s cord blood because we didn’t bank Paige’s. I’m so happy we did
and we will continue to do it because every day, brilliant minds are finding
ways to use that powerful cord blood to help people. The CBR web site indicates
stem cells are used 73% of the time for the person from whom they were taken
and 27% of the time for siblings. I feel like it is an investment in both of my
girls’ futures and pray we will never have to use them but I’m happy knowing
they are there. I recently read a
clinical trial where cord blood is being used to help children who have
suffered hearing loss like Paige’s. If we would have reserved Paige’s cord
blood, she could have potentially participated in this trial to see if her
hearing could be regained. I cannot and do not dwell on that past because if
you would have asked me what I thought the chances of one of my children
getting cancer back when I was pregnant with Paige, I never would have imagined
that it was a possibility. The call also reminded of driving around five years
ago with a cord blood kit in my car in case I went into labor when I was at
Children’s or at Dana Farber. Ahhh… memories…
In five years, none of us are the same. My family outwardly
resembles the people we were five years ago (with the addition of wrinkles and
gray hair… lots of gray hair) going into this experience but we are forever
changed. I know that about myself and those who knew me best before dx would
probably say the same. Something was taken from us and although I have tried
hard to get it back, I just can’t fill that space. For Paige, I believe that my
free-spirited, willful, happy child is probably who she would be regardless of
her diagnosis because she doesn’t remember it and her approach to life is hers
alone. I admire that about her not to mention about a billion other things.
We had Paige’s tests in August… note I didn’t say scans. Everything
came back clear! This is the first time in five years that Paige was not lit up
from the inside, squeezed between MIBG plates, sedated for MRI or had her
breathing controlled by another human in order to see what’s going on in her
little body. This time, she had labs, urine, pulmonary, cardio and will have
renal later. This was the first time in many years that she actually had to
have a “poke” to draw labs which was a little stressful for her. She is the
bravest person I know, not only from what she endured through treatment but
also just in her drive to experience all life has to offer and always with that
smile that lights up a room. We’ve also just added another –gist to her list of
doctors too: an endocrinologist to monitor her body as it matures and
approaches puberty at the right pace. So, I don’t know what to call this
feeling that I have referred to as scanxiety for the last five years… is it
just anxiety? Well, that sounds like a normal emotion… I’ll take it... at least
until February.
Paige started second grade this fall and Maya started
kindergarten. I still can’t believe it. Paige’s teacher has described her as “a
bundle of joy”. She is certainly a bundle of something! Five years ago, I had
prayed for second grade not because I wanted to blink through the bad stuff but
because in my warped mind, if she got to second grade it meant she would be
five years passed diagnosis and on the other side of the scary odds. She is
there. Although we continue to wander the woods on high alert, there are breaks
in the canopy where the sun filters through shining more and more light on the time
we have to enjoy a seven year-old who is on a normal-kid path.
I decided to retell Paige's diagnosis story this past September
because it was Childhood Cancer Awareness Month and while it is now February, awareness of childhood cancer is a year-round struggle. If you are
reading this, you are aware already. My request is that you help spread the
word of childhood cancer and that with the right funding and attention, more
kids can have a response like Paige has had. Share her story. Encourage friends
to donate blood, platelets or time at their local children's hospital because
all of those things can save lives as much as funding can. Wear a gold ribbon
and when asked why, tell them that you know a Super Bug who has Super Friends
who all deserve more.
Paige
Click HERE for Info on Donating Blood at Boston Children's Hospital
Click HERE for Info on Donating Platelets at Boston Children's Hospital
Click HERE for Info on Donating Blood at Boston Children's Hospital
Click HERE for Info on Donating Platelets at Boston Children's Hospital