The challenges of parenting a cancer child

Funny G and Bridgy moments....

"Man, you are one lucky bug"...G's new favorite quote from our new favorite movie, Mulan.  She says this to me a couple times a day in her Eddie Murphy accent.  

Bridget's new favorite saying, "No way, man!"

G starts off her stories or ideas by saying, "Ok, so"  which sounds like queso.  

We laugh about it and she cracks up!  

"Ok, so...Oh, I said it again mamma, Queso!!"

G said something that struck me in an awe tonight.  Throughout this past year, Gabriella and Bridget have been shown so much love, support and kindness.  I know it's had a big effect on both of their personalities in an amazing way and I've seen how it's helping them flourish through this undesirable situation.  Tonight I showed G a picture of our dear "Squishy" getting rainbow tinsel in her hair and I asked G what she thought of it.  She said, "It tells me about everything nice...it tells me about love."  I knew I had to write these exact words down quickly before I forgot because it was profound.  She said it in a way that has truly reflected her spirit throughout this ordeal the past almost year, even enduring all of the hardships she's gone through.  Thinking about the way she said this and the sincerity in her voice brings a smile to my face and a tear of happiness to my eye.  A friend commented on one of the pictures I posted of the girls recently saying how G appears wise beyond her years..."she emits a vibe of strength, inspiration and beauty".  I was grateful to hear this because at that moment too, I noticed it. I knew it was there but sometimes because we are so immersed in what we are doing, we can't see beyond what's right in front of us.

I remember about a year ago as we watched the end of "The Little Mermaid", G started wiping her eyes.  I asked her if she was crying and what was wrong.  She said, weddings make me so happy that I cry.  She had just turned 4.  What 4 year old cries tears of happiness at a wedding?  Ok, it was a cartoon wedding but still.  This little person truly feels and appreciates the joys of life's little moments.  I am so proud of the little lady she is becoming and know that both she and Bridget will grow up to become incredible women.  

The challenges of parenting a cancer child...

I've spent a lot of time this past year thinking about how I was going to parent my two girls after G was diagnosed.  Actually, I thought about it a lot even before they were born but of course, things always change once these little ones make their appearance.  Parenting was always challenging because these little people don't come with a manual.  (I wish they did!)  But after our diagnosis, everything changed.  All the rules that we set out to follow were going to be different.  It's a very tough balancing act and I think it is different for every cancer parent.   Does it depend on the child's diagnosis or the severity of their illness?  I definitely think this is a big factor.

Throughout the year, I've come across many different cancer mom blogs.  I've read about those that have given their child the world because they know their child will leave this earth too early.  I've read about those who have regrets about not giving their child everything they desired.  And many more where....well, they just don't mention it.  I have so many questions and I want to know what works and what doesn't.  Why don't any of them say, "Omg, my child has cancer but damn, they are driving me crazy right now!"  It still happens.  It's life.  I don't believe a cancer parent is void of these irritable moments but no one ever talks about them.  Maybe they do have these moments but choose not to share them.  Maybe it doesn't ever cross the minds of the parent's whose odd's are stacked against their child.  But my conclusion is this; every mother and father with every child in the world will do it the way they see fit and will figure out what is in the best interest of their child.  They still love that child with every piece of their being, unconditionally and that is what really matters.

So, here's my crazy life moment that happened today and I wanted to share it because it was funny, typical, and maybe a bit normal.  We've been slowly transitioning back into the "real world", one where there is less needles and toxic drugs (minus one more treatment)... and more normal "owies", bumps, and bruises.  I heart "normal".  The girls have been slowly making their way back to school with once a week visits.   Gabriella hasn't completely finished her treatments but we thought we would start now getting the girls acclimated as long as G's counts were good.  We also wanted to do it for Bridget.  The girls have gone too long without being among regular classmates because extending this treatment protocol any longer wasn't a risk we wanted to take.  Recently, G even stated she "missed school".  Hearing this from a child who had a difficult time adjusting to school (at least from an over-protective parent's view) was like music to my ears.  (I do admit that it has been amazing watching the girls' relationship develop over the course of the last 10+ months.)  We wanted to adjust them slowly this time and make it fun.  Today we made our weekly visit to Circle of Friends so G could play outside with her friends and Bridget could make some new ones.  After our short but sweet visit, we went to the gym.  The girls have an area to play in so mommy can workout.  I told them if they were good, we could go to Kmart and get a toy...a small, not expensive toy as long as they listened and did as they were told.  They were amazing so off to Kmart we go.  When we get there, they were so excited and ran back to the toy section (obviously they know this area too well).  Here we go..."Mommy, can I get this?  Can I get that?  What about this?  What about that?  I really want that."...while I constantly reminded them and showed them the size of the toy plus gave them options to choose from.  Heck, Bridget didn't even pay any attention and was off collecting as many toys as she could hold.  After about 20+ minutes of negotiating lead to not listening, which lead to child anarchy with Bridget refusing to put any toys away while saying to me, "No way man", and G running away from me, I left with two screaming and crying children and no toys.  In any other situation, I would have been really proud to have left without toys but I get this unsettling feeling with G when I make these decisions and have to ask myself, "Am I going to regret this later?".  I hate this questioning and I just have to stop because it's about 'here and now' and the fact that G is going to grow up to be an amazing person.  That is that.


Today (the 23rd) brings back the memory from exactly a year ago when I spotted this ugly thing starting to grow inside my daughter's body.  I saw something unusual and immediately called the doctor to schedule an appointment the next day.  At the time, it didn't seem so unusual that I needed to panic for any reason but just made me tilt my head to the side and say, "hmm".  I still have the text I sent to a dear friend telling her I was freiking out after I did a google search which kept leading me to "cancer, cancer, cancer".  No freiking way.  It couldn't be, not in a 4 year old, not in my perfectly beautiful and healthy 4 year old.  The next day, after a glance from the doctor, it was all "normal" and I was just being paranoid.  It seemed normal until about 2 weeks passed and it seemed to be getting bigger.  Hmmm...keep an eye on it.  3 weeks went by and we had our next appointment for her "well child check".  We made sure it was looked at again and things started to evolve.

Damned it.  Damned it.  I want to go back to that day and demand our doctor be more thorough.  I want to go back and make sure I stood by my initial gut reaction that it wasn't normal.  I want to go back and ask her why she didn't even check any of the surrounding areas for masses or anything unusual.  I just wanted to hear that it was "normal" and that I was just being paranoid.  I'm still kicking myself but I know I have to put it behind me and move on.  It's hard to explain the feelings behind it all but I think processing the events that took place a year ago as they happened will help me get through them.


Forever grateful for supporting us through this journey,

Kristin
Team G

13 down 1 to go

It's almost 9:00 am Friday.  G is sleeping.  I am reminiscing about how many times I have watched G sleep in this hospital, in this very room actually.  So many times, backed by so many different emotions.  What an incredible ride this has been.

Gabriella had her 13th VAC (vincristine, actinomiacyn, cyclophosamide) chemotherapy treatment yesterday.  The day started out with some minor excitement when we got a call from El Camino hospital telling us that her Chemo had been canceled for the day because they did not have any beds.  We immediately began making phone calls and within the hour they managed to find a bed at Lucille Packard for her.  It actually worked out pretty well because G has started to associate the "big" hospital (El Camino) with feeling really bad from the chemo.  Kris and I were curious to see how she would do at the "little" hospital instead.  It was easier to get her motivated to go but she was still apprehensive and scared when she realized it was going to be the same shit as always.  The change of hospitals set us back a few hours and things are never as streamlined or on time at Packard because they are so busy.  We had a couple of outstanding nurses that got things going and by 6:00 pm her chemo was done and she was high as a kite on meds.  I know I have said this before but watching my now 5 year old stoned out of her mind is such a disturbing site.  She is quite funny and says some interesting things but I will be glad when she gets her innocence back and these things are far behind us.

Another positive of coming to Packard was that Gabriella's oncologist, Dr. Marina came to see us at the end of the day.  It is always great to see her, she brings such calm, positive energy, that we always feel better after meeting with her.  She was very pleased with how G is doing and how well she looked.  She thinks that this one and the last chemo treatment will be easier on her because she is almost recovered from the radiation treatments.  They don't really understand why they affect each other the way they do but she said the father away from radiation the easier the chemo becomes.

G had a very special visit yesterday from Squishy, her counselor from Camp Okizu who is a pre-med student here at Stanford.   Kris called her when we got here and she was able to free up her busy schedule and spend some time with G.  Gabriella absolutely adores her and it really made her day.  She is a pretty incredible young lady.

So I guess besides poisoning my kid yesterday it was all in all a pretty good day.

Team G

Adam

Race for Life

Written on Saturday...

So, today I woke up at the crack of dawn...well, it really wasn't the crack but it was early for me.  For those of you who know me know that I like to sleep in in the morning.  I say up late...how else would I be able to get all this stuff done!  Anyway, it was light outside but it was cold...damn cold.  My plan was to go for a run.  It was the only chance I'd get in a couple of days and I had to do it or else I'd miss the opportunity.  I looked at the clock...7:00.  Ok, a few more minutes.  7:15...ok, its really cold outside.  Should I go...maybe a few more minutes.  7:20...still really cold and the sun hasn't peaked out yet.  7:23...ok, get your butt out of bed and just go.  You have to do it or else you'll be kicking yourself all day.  It's a mind decision...you just have to mentally make the decision and do it.  I got dressed, put my music on and hit the cold cold weather outside.  Brrrrr...damn it was cold!  Probably about 28 degrees outside.  I passed a few sheets of ice on the sidewalk, realizing it was actually ice when I slipped in it.  It took all my will to not turn around and get back into the warm bed I awoke from.  But I did it, if only for 30 minutes, I did it, for my G for myself, for all those children fighting cancer.  They have to wake up every day facing the fact that they are fighting cancer.  It wasn't going to kill me to get up early and run...because I could.

Here's my motivation:  I just entered the Big Sur International Marathon and I'm running it for a local charity called  Lazarex Cancer Foundation.  It's a local organization out of the bay area which "supports all end stage cancer patients (children and adults) and the cancer community by providing assistance with cost for clinical trial participation, navigation through clinical trial options, and community outreach and education".   My new favorite friend and comrade, Angela, convinced me to sign up and as a fellow cancer mom, I know we can do anything we set our minds to.  I know, I know; I should be resting a little and relaxing.  And I did, for a couple of days.  But there is too much ground to cover...too much to do in the world of fighting childhood cancer and I must stay strong.  I must stay in the game physically and mentally.
I'll be sending emails out for collecting donations in my run against cancer.  If you want to help me kick some cancer ass, click on this site.  Every training run will be dedicated to a child with cancer I've met on the way.  My first run being dedicated to Alex McCrone currently battling rhabdomyosarcoma.

Below is information for Alex.


Dear Friends, 

Alex and his family need our help right now.  They haven't asked for it but we aren't taking "no" for an answer.  Alex had a relapse in October and now the tumor is mutating.  With a 2 year old to care for and a baby due in a few weeks, this family has a lot going on.  

Here are some ways to help: 

1) We are setting up a housecleaning service for the family once a week.  If you would like to donate, email angelafarley007@yahoo.com

2) Below is a link to sign up for meals.
http://supportplanner.caringbridge.org/planners/alexmc2/views/monthly

The family lives in Salinas.  If you live out of town and would like to have a meal delivered from one of the local restaurants, visit this site:
https://maps.google.com/maps?client=safari&oe=UTF-8&ie=UTF-8&q=restaurants+near+1858+Hudson+Way,+Salinas+CA+93906&fb=1&gl=us&hq=restaurants&hnear=0x808dff42169eb441:0x412875f5177f6ceb,1858+Hudson+Way,+Salinas,+CA+93906&ei=m9L1UJ6WCsWJiwLRo4GwBQ&ved=0CKsBELYD

3) We will be making a couple of trips to Costco for food so if you would like to donate Costco cards, we will gladly accept.  

4) Gas cards are always appreciated and can be sent to Jacob's Heart on behalf of the family.  

Please contact Judit at ajsedillos@gmail.com, Angela at angelafarley007@yahoo.com, Kristin at krisycos1@gmail.com.  

Thank you for your unwavering support for these families and children with cancer.  A little can go a long way.  Let's help Alex beat this beast!!! 


This past week, we got the green flag (via G's last lab results) to visit Nana and Papa in England...it's really Lincoln but I love that G calls it England.  What a great, relaxing, motivating, fantastic trip!  I am very much looking forward to the trips we will be taking this coming year!  Plus, there's nothing like mom's house and having her meatloaf ;-).  Thanks mom.
Adam and I got to sneak off to the mountains while Gabriella and Bridget were safe and cozy with Nana and Papa.  Even though the temperature in the mountains registered 14 degrees, it was absolutely phenomenal!  And do you know what I smelt all day...sweetness in the air.  Adam and I played on the slopes, cruised through the freshly fallen powder and basked in the moments when the sun shined through the clouds.  The day was perfect.  It's kind of like eating a hamburger after coming out of the mountains from a long packing trip or sleeping in a warm bed after camping on the ground for a week.  I don't know...maybe I just appreciate the little things so much more or I'm just loving that we are all living life, or that my G is almost done with her treatments and I can picture all of us skiing together very soon...all of it made my heart sing.  I know both of us missed our girls tremendously.  It's so hard to leave them and I know it's especially hard on Adam.  Probably because he works more and I'm home with the girls more.  Every time we saw a little tiny person in a ski suit, I just couldn't wait for those little people to be my girls...and they will be...very soon.

On the way home, Adam and I shared an incredible site.  The sun was setting and there were big fluffy clouds in the sky.  The colors of the gray clouds were outlined with an orange-rose tint as the sun was setting in the background.  Snow covered trees filled the horizon and we were surrounded by a vast forest covered in a white blanket of snow.  Yet another sign of hope.

This Thursday will be chemo #13.  Three weeks after that will be chemo #14...our final chemo.  In between rest moments, we've been planning the path for our girls to head back to some normalicy with school, swim classes, art, ballet, gymnastics (but not all at once of course).  We will never be completely "done" with cancer.  There will be scans, follow ups, and the worries that will be hard to shake but we will be finished with the toughest part and for that, I am ecstatic.  As for fighting pediatric cancer, there is still so much work to be done and plans are already being made to continue the fight.

Forever grateful,
Kristin

A little play time at school.

G with her favorite Uncle Ronnie.

Bridget getting her first pedicure back in December. 

G, my superstar with her beautiful necklace from Auntie Steph.

A New Year

Funny Gabriella and Bridget moments

We're in the car and G asks me to roll down the window.  After a few minutes, she get's cold. 
"Momma, can you roll up the window?  I'm starting to feel like an ice cube popped right out of the refrigerator back here!"

Guess what girls...there's going to be a meteor shower tonight. 
"What, a meteor shower?!?  Hey Bridget, guess what, there's going to be a meteor shower!  Mamma, what's a meteor shower...are meteors going to fall on our house?
"Lol..."They're shooing stars that fill the sky".
Bridgy, "Oh wow...meteor  hower... Ow eyiting G".

As we are getting ready to read a book and I accidentally almost sit on her...
"Hey, what are you doing?  You almost smashed me into smashed potatoes".

And my favorite...Bridget with her "me" in her mouth, finding anything to stay distracted and keep her from going to bed...
"Can I (h)elp the (f)ishies?"
"Help them with what?" G asks.
"Elp the ishes?"
"I know, with what?"
"The ishes are wimming."
" I know Bridgy.  That's what they do."
"They are yuck (stuck) in there and an't et out.
"G giggles, "They're supposed to be in there silly."


A few days before New Years and after G's 12th chemo...

I haven't feeling much like writing lately.  I've been feeling up and down and updating the blog often makes me feel vulnerable because it makes me face my emotions.  Maybe I'm reflecting back on the year and realizing how much has happened.  Maybe I over did it through the holidays and am just wiped out.  I guess I haven't wanted to feel vulnerable and am wanting to just have a normal year, just like everyone else.  As the year comes to an end, I realize I'm just drained, emotionally (and probably physically) drained. It's a time to reflect on the past, learn from it, and move forward. What can I possibly say about this past year that I haven't already said?

The other day, I was looking at old pictures when girls were babies...of my G.  She was just a beautiful baby. Never in a million years did I ever think I'd have to put her through this.  If I knew, I would have just died.  Her little body with her skin so perfect now holds scars and battle wounds that tell a whole different story than the one we would have wanted for her.  I often stop for a moment to watch her sleep as tears run down my face.  Her beautiful little face and bald head reminds me of when she was a baby with her big beautiful eyes.  It just crushes me but I can't think of that.  I just have to get her through this.  She will be stronger, more amazing, more incredible because of it. 

As Adam stated in the last post, we made it through G's 12th big chemo.  We have been switching staying with her every other time and this time was my turn.  Each overnight chemo has gotten increasingly difficult (physically for G and emotionally for us) as the chemo builds up in her body.  After she get's her meds and falls asleep, I break down and cry.  It's so difficult to continue seeing her go through this but I know I have to hold myself together for her.  Luckily, we've found the right combination of anti-nausea meds and sedating meds to keep her from throwing up and keep her comfortable through the night.  She came home the next day feeling better and not stumbling around from so much sedation.  I haven't had many tears lately until the big chemo's.  They have been wearing me out much more these days and I just don't feel like myself for a few days after.  (I apologize for not wanting to talk, not returning my emails or phone calls).  We are so close and I just want to be done now. I want to stop giving my child this poison.  I'm trying to keep busy so I'm not overwhelmed with sadness.  It takes me a few days after G's chemo to recover emotionally, once I see she starts to recover physically.  Then I can start getting back to my normal busy self.  We have 2 more big chemo's, scans then port removal.  Scan's will take place every 3 months after for a while to make sure the cancer does not come back.  That will make us anxious as anything but we'll get to that later. 

Bridget has been growing up right before our eyes.  She is a charming little girl and brings so much laughter to our lives.  She is the delight and the innocence that has glued our family together.  She has grown up more compassionate, more thoughtful, more compliant and more giving than any 2 year old should be.  Maybe it's a second child syndrome or maybe because of our situation.  Whatever it is, she is an incredible little person with a heart of gold.  

The girls often watch Team Umizoomi and at the end, Bridget excitedly does the "crazy shake" where she runs in circles shaking her hands and head.  We're continuing to try and get rid of "me" but haven't had the heart to fully take it away yet especially after the crazy chemo days when we are all wiped out.  She often pulls the chair up to the counter and climbs up to find her "me" when we're not looking.  She will run into the living room and say, "Look mommy, I got my me" and laugh.  

Bridget is well potty trained. She often goes the bathroom all by herself and will sit for 30 to 45 minutes every few days.  I repeatedly ask, "Bridgy, are you done yet?" and she says, "Not (y)et mamma" and checks in every so often with another "Not done (y)et mamma".  She is a great sleeper and overall very independent.  Our little G is more opposite but she has every reason to be.  We often find G's little bald head in our bed during the night and don't have the heart (or energy) to put her back into her own bed.  G is very much a cuddle bug while Bridgy runs around and likes to sit on her own.  We often have to coerce her to cuddle with us on the couch but does so willingly during the cold mornings.  

I just wanted to share some of my special holiday moments and some of Team G's accomplishments this season.

Adopt a Family...

Team G helped Jacob's Heart to adopt 28 children who support families that have a child dealing with cancer.  There was a couple of special letters that were delivered to us from two of the children and I wanted to share with you...grammatical errors included because it's just so precious and innocent.  These letters just bring a smile to my face every time I read them.

From Sergio, one of the boys:

"Thanks for giving use gifts.  I appreasiate your work and kineness.  Our dad works, but they don't pay him that much money to buy use presents.  He bearly gets enoughph money to pay the rent and bills.  And you also get the thanks from my leattle brothers.  God Bless you Kristin C"

From his little brother Jesus:

"Thanks for giving us present's.  I appreciat your work, and kindness.  Our dad work's but they don't pay him that much money to buy us christmas present's.  He bearly gets enough money to pay the rent and bills.  And you also get the thanks from my little sister that has lukemia and is so sick.  And you also get the thanks from my dad and mom.  They don't know how to talk in english and write in english, but they told me to write you this "Thanks for all the hard work you've done to get the christmas present's to my son's and daughter.  I really appreciate you".  Thanks 

Snow Day...

We've talked about Gabriella's Snow Day for Jacob's Heart but I just wanted to share my favorites...again.

Toy Drive for Lucile Packard...

Again with the support of Team G (all of you), we were able to collect maybe around 400 toys for the toy drive. There was just too many to count!  Individuals, groups and businesses collected toys, gift cards, gas cards, and more which were brought up in about 4 to 5 different cars to be dropped off to the cancer unit at the hospital.  I think we totally overwhelmed the hospital with the amount of toys that came in.  We didn't even realize how many toys were collected until they started to pile up in the entrance of the hospital!  Once we all figured out what to do with the massive delivery, they were very grateful for all that we brought for the children. 

Girls Room Makeovers...

With the artistry of Papa, my painting and Adam's handy work, we managed to give the girls a new "shared" room (aka G's room) and a "play room" (aka Bridget's room). 

Gabriella's Birthday on the 24th...

A few close friends, some yummy food and cupcakes and the room "reveal" took place on Gabriella's birthday...the morning of Christmas Eve!  

Christmas...

Surrounded by wonderful family and friends, we ate, drank, opened gifts and celebrated a delightful holiday!  The girls were showered with many gifts and a couple of dollhouses from Santa.  G had a last minute request from Santa for a fairy that "has a string in the back that I can pull to make her fly".  Luckily mommy had already gotten both girls a couple of Barbie fairies but G kept looking at the back of the doll wondering why there was no string.  Too smart that girl!  













I've grown so much this year in tolerance, compassion, strength and accomplishing tasks I never thought I could accomplish.  I've witnessed not only family and friends but a community come together.  I seen the heartache of a parent as they kiss their child's head for the last time.  I've seen and celebrated with parents whose child is now cancer free and those who have to start the journey again because of a relapse.   I've seen those who are just beginning the long battle ahead.  I just hope for those who are at the start of their fight If they can find strength and hope in their friends and family, community and the nation as we have. I hope they find strength within themselves to get through the fight.  I've learned to never ever stop believing in miracles, never ever stop believing in each other and never ever give up on hope.  

My biggest though for the new year is this...How can we fail in this journey?  We've had unwavering and steadfast support from all of you. Even when we were so busy and couldn't write back or just having a rough time, you still were there. Unknowingly, you held our hands and carried us through it with your unwavering support... might it be a text, a call, an email, a letter, or a hug to the bigger things like coming over with meals or throwing us a fundraiser, a snow day, overwhelming the hospital with hundreds of toys and a Santa (if only for a moment) or standing by our side through the hottest weather while we sold cookies and baked goods to raise money and awareness for pediatric cancer...you've been there. How can we fail?  The answer to that is WE CAN'T!!  I am grateful beyond belief I will never forget the support you've shown and how you stood by our sides.

No task is too great to accomplish.