Wednesday, September 15, 2010

I get it... I don't like it, but I get it...

I had known when this whole thing started 2 years ago when Mikey was diagnosed that my 2 best friends would be there no matter what. They they would put whatever feelings they had aside and be there for me. That the topic of 'kids having cancer' would be uncomfortable for them but they would be there because they were my best friends. They would let me cry and not make me talk about it until I was ready. They would take 2 minutes to call, even when they were busy, to see how Mikey's chemo day went. They would be there to go out for dinner or a quick drink on a night that I could get out even if it was last minute because they would know I needed to get out and if I could get out we should go. They would ask about Mike but not push for details until I was ready to give them because they know it takes me some 'processing time' to get it all together before I can share it. They would have 'normal' conversations with me that didn't revolve around cancer because I am still me and not just a 'cancer mom'. They have not disappointed me. They have been amazing. They have done all of that and more. For the 2 of them, I could not be more grateful.

I also had, or thought I had, quite a few really good friends when Mikey was diagnosed. They were there and they would call in the beginning but as times got tougher and the battle kept going, the calls got less frequent and their lives moved on. I wasn't the 'fun Chrissie' anymore I guess. Reality set in and Mikey's cancer wasn't going away. I was a mom of a kid with cancer and to them, that must have trumped me just being Chrissie. Or maybe my problems were so big that they felt funny complaining about theirs to me. Or since it couldn't be all about them all of the time, they couldn't handle someone else's problems being real and not self-created and dwarfing theirs. I don't really know the reasons. What I do know is that very slowly, their phone calls & e-mails were coming further apart, their text messages not as frequently, their Caring Bridge journal updates were stopped and then there were no calls, e-mails and texts.

I get it, I really do. Everyone has their own lives and problems. No one wants to talk about a sick kid. I don't mean a kid who has a cold or an ear infection but a SICK kid. A kid with cancer. Sure, you can read about it in Family Circle or Reader's Digest, but to not only know OF a kid, to know THE kid and be friends with the kid's MOM, well, I guess that's just too much for some people. They can get new jobs and new homes. They can travel and they can go out as often as they can get a babysitter. They can send their kids off to school and I have to have a teacher come in to teach my kid the Kindergarten curriculum because he is on chemo and is immuno-suppressed and he has his mediport accessed for a week at a time with tubes hanging from his chest. While these friends were moving, getting new jobs, traveling, going out to dinner and hanging out with friends I was packing an overnight bag with seasonal-appropriate clothing for the car in case of emergent hospital visits, traveling back and forth to Sloan, taking care of a newborn and an 8 year old on top of my 4 year old, giving my 4 year old chemo and learning how to administer IV meds at home and take care of his line. We lead very different lives now. I just wish that these old friends would stop coming up with excuses for not being in touch and just let it go. Please stop telling me how busy you have been and stop making excuses for not e-mailing or checking Caring Bridge, I guess you don't realize that I am sure your text messaging skills are still in tact or that I know I update Facebook with statuses about Mikey and you can read and respond to 900 other updates but those. Really, you are just making it worse. Especially when you try to publicly be a 'good friend' and personally you haven't been there for me in months.

I wish these people would realize that I'm still me. I don't need to talk about cancer every second of every day. Is it a HUGE part of my life right now? Absolutely. Does that mean I don't have other aspects to my life? Not at all. I have 2 other kids to talk about, I can still joke and laugh and be me. Every discussion I have isn't about Mikey and cancer. I guess the cancer is just too big a thing for some people. It makes me sad because these are the friends where I thought friendship trumped cancer. I guess not.

Not all of my experiences with friends have been bad, of course! Some old friends that I had lost touch with, people who were acquaintances and people who were strangers to me when Mikey was diagnosed, have become new friends. They have been blessings when I need them. They know I hate asking for help and they know I won't ask for anything but they know that I need support. They are there. They call and e-mail just to say Hi and check in on us. They text. They offer rides to Sloan. They bring meals, desserts or a bottle of wine. They offer to babysit. They just call to chat about things that are not cancer related. I appreciate them so very much and can't tell you how I have gotten through days because of them. They have become friends in every sense of the word.

The support that I have been blessed with doesn't stop with friends of mine. Our families have been AMAZING. They are worthy of a post of their own though so I won't even get into how we could not be functioning on a daily basis without them here. Knowing that so many people are praying for and thinking of Mikey and our family makes my days a little easier. People that I have met through Mikey's journey. Other cancer families. Friends of the family that I have never met. Old colleagues of mine and my family's. Members of our community that have rallied around us. Community-based groups that have been created by men and women that I went to school with ump-teen years ago. Women that I had met in Florida during our short life outside of NYC. Cancer support groups created by families who have been where we are, some of whom have suffered the horrific loss that we all fear. I know I am leaving people out, and I'm sorry but I'm on emotion overload and I hope you know that I thank you and appreciate you all.

I wish I could tell you that it doesn't hurt that those people I considered friends are not here when I need them. I can't. I can tell you that I get it. I don't like it, but I get it. I can tell you that I am cherishing my best friends and my new friends and I hope that they know how much I appreciate them.

Monday, September 13, 2010


No, I'm not competing for a medal and I'm not shopping for jewelry. I'm talking about going gold for the kids. Kids like my Mikey. Kids who know all too much about the medical field at a very young age. Who have mediports, have surgeries, receive chemotherapy and radiation and lose their hair. Kids who have cancer.

Everywhere I look I see pink. Pink ribbons everywhere. Signs saying that October is Breast Cancer Awareness Month. The only problem is, it's not October... it's September. Breast Cancer Awareness Month isn't until October. September, and I'll openly admit once again that I didn't know this until Mikey was diagnosed with cancer, is National Childhood Cancer Awareness Month. It's a month for the kids!

I keep a Caring Bridge site for Mikey. I write EVERYTHING there. I am very open about what happens to him and what he goes through. I write about mediport accessing, chemo, vomit, exhaustion, walking.... it all goes on there. It has to... I am only one mom, I can only remember so much. It's my way of journaling so that I can look back and say things like, ' oh yeah, he had diarrhea at this time of the chemo cycle last month too'. It's also my way of telling everyone who cares about Mikey and our family what is going on so things don't get lost in translation. Calling and repeating what happens at a doctors appointment over and over and over again just doesn't do it. I call Mikey's Caring Bridge site a two-fer for me... a journal for me and a source of information for our family and friends.

On September 1st I posted about Pediatric Cancer Awareness Month on that Caring Bridge site. Although, lately it's been called Childhood Cancer Awareness Month. Today is Childhood Cancer Awareness Day. It's a day for the kids who have cancer to be recognized as actual children. Not just statistics. They aren't numbers or medical records. They are kids. One of them is mine. He's 4. He likes to play and laugh and sing. He can't go to school but he can flush a mediport line with the best of IV nurses. He is funny and has a big sister and a little brother. He is a computer whiz and loves math and the alphabet. He has sight words. He is small for his age but the fight he has in him rivals any professional boxer. He is 4 and he has cancer. And this is a month for him.

This month is about the kids! Things should be GOLD... there should be gold ribbons everywhere. There should be signs and fundraisers for the kids. It's not October yet. I don't want this to sound like I'm picking on breast cancer, I'm not at all. I know so many amazing warrior women who have had breast cancer. They are resilient, strong and wonderful women! There needs to be a cure for breast cancer. Breast cancer has it's month though, it's October. Right now, it's September. And September is for the kids!

I'd like to share some facts about Childhood Cancer:

** One in 330 children will develop cancer by age 20.

**Each day, 46 children are diagnosed with cancer. That's over 12,000 a year.

**Each child in the U.S. diagnosed with cancer receives approximately one sixth of the federal research support allocated to each patient afflicted with AIDS. Yet in 2004, 48 new cases of pediatric AIDS were diagnosed versus more than 12,000 pediatric cancer cases.

** The National Cancer Institute’s (NCI) funded research portfolio on 2009 was $3.1 billion. Of that, breast cancer received 22%, prostate cancer received 11%, and all 12 major groups of pediatric cancers, combined received less than 3%.

**The American Cancer Society provides only 1.85% of their research dollars to Pediatric Cancer.... that's ALL 12 types of pediatric cancer combined in that 1.85%

** Cancer accounts for the greatest number of disease deaths of children in the United States and kills more children per year than cystic fibrosis, muscular dystrophy, asthma and AIDS combined.

**Children are treated with drugs that have been tested for and marketed toward adults and pharmaceutical companies don't test oncology drugs for children. Approximately half of the drugs used to treat children are at least 20 years old.

** Childhood cancer is not a single disease, but rather many different types that fall into 12 different categories.

** Overall, one out of every five children diagnosed with cancer dies. In some forms of cancer, as few as one out of every five children will live.

** Approximately 20% of adults with cancer show evidence the disease has spread, yet nearly 80% of children show that the cancer has spread to distant sites at the time of diagnosis.

**Recent reports show that 2/3 of Pediatric Cancer survivors experience significant medical problems resulting from their original cancer and/or its treatment.


All cancer is horrible. It's horrific. I, in no way, shape or form, want to offend anyone by this posting. We need a cure for all cancer. Right now though, our kids need us. This is their month. Show your support for the kids! There are so many places that you can donate money to in support of research for a cure for these cancers that affect children... The St. Baldrick's Foundation, St. Jude's Children's Research Hospital , Pediatric Cancer Foundation, Alex's Lemonade Stand, Glad to Give & Cookies for Kids Cancer just to name a few!

Your support doesn't have to cost you a penny though! You can always...

**Tell everyone you know about how someone you know (or even someone you don't know!) how you, or someone you love, has been touched by childhood cancer.

**Offer to volunteer at a local childhood cancer center

**Let a family you know who has been touched by childhood cancer know that you are still there for them and thinking of them, care for them and are praying for them!

**Let the family of an angel know that they, and their angel, are still in your heart.

Thursday, July 29, 2010

Can any good come from bribing your child??

It's round 2, night 2 of chemo. He's 4. We have chemo nights. Chemo nights! How the hell did this happen? When did it become routine to have chemo nights? Anyway... I digress...

It's round 2, night 2 of chemo. Round 1 was a disaster. He took it the first 4 nights. Got horribly sick overnight on night 1 but nights 2-4 he was ok. Night 5, he didn't even absorb the chemo before he got sick. We repeated the dose again the next night. Same thing happened. Sick before he cold even absorb it.

I am a paranoid wreck this time around. I don't want my kid to get sick. I don't want to be the one giving him medicine that will make him be sick. But I don't want him to have cancer either. So I give him the medicine. And I make sure that he keeps it down. I give him Zofran and then a dose of Ativan. I laughed at them when they suggested that! Ativan? A narcotic? Seriously? He's 4! Then reality set in... I guess if I can give him chemo, I can give him a narcotic too, right? So I give it to him. It's supposed to calm him down and make him less anxious taking the chemo. I wish someone would give him that message. He seems to have missed that memo.

Round 2, night 1 was ok. He took 1ml of the chemo and wasn't handling it well. I knew we were in for another 'spitting it out' before absorbing it.

So, I went there. The place you SWEAR as a parent you are NEVER going to go. You know that absolutely NO good can come of it. That there is NO turning back once you go there. But I went there anyway. I did it. I bribed him. I told him that if he took his medicine and didn't 'spit it out' (as he so politely calls throwing up) I would give him a surprise. (Thankfully I had a DVD that I knew he wanted hidden in my bedroom) He looked at me funny but he took the chemo! He took it and he didn't spit it out!! I was so thrilled! We waited the 15 minute absorption time and I ran upstairs to get the DVD! He was SO excited. I knew at that moment why so many people frown on bribery... because, even though it tends to work... it becomes an expensive tool to get what you want.

But then I realized... in our case... a lot of good can come from bribery. If I bribe him to take the chemo and he takes it and if the chemo will keep him here with us longer then I'm all for bribing him with whatever he wants.

Saturday, July 10, 2010

Not the meaning of life... but not too far off the mark

Life is not a competition. It isn't about whose problems are bigger. Or playing games of 'tit for tat'. Or looking past the good parts of your life to find the bad. Or purposely playing the part of a martyr.

Life is about learning. And teaching. And believing. And stopping to smell the roses. And being there for those you love. And friendship. And family. Life is about love.

Look past the nonsense. Not to be a cliche but really, don't sweat the small stuff. In the end, it's all small stuff. Where you live. Where you went to school. Where you work. Sure, it's important to have a home and a degree and a job... but what good is any of it if you aren't healthy & happy? If you don't have a family to share it with? A healthy child to hug at the end of the day? A friend to spend time with?

I have 3 children. I sweat the small stuff sometimes. The nonsense that plagues people every day. The lines in the grocery store being long, the price of gas, the messy house, the humidity of a hot summer NYC day... but just as I start to complain about the small stuff, I stop and remember... I have 3 children. They are all here with me. I can hug each one of them any time that I want and kiss each of them good night 100 times as they fall asleep. They are the loves of my life.

This is a blessing that comes from having a sick child. When I say a sick child, I don't mean a child with a cold or a 24-hour stomach bug but a SICK child. A child with a life-threatening disease. I know all too well that in one day your life can change. Whether it's the day that you receive the diagnosis, the day that the doctors give you a prognosis... or a day that I can't even think about happening but has happened to too many families that I know and care about. In one day life can change. Drastically. In a way that haunts your nightmares. And then would I really care about the length of the line at the grocery store? Not at all... I am willing to bet that I would be willing to wait in line on a hot summer day at a grocery store with no air conditioning with a full bladder for 4 hours and have to stop and spend $100 to fill my gas tank if it meant that I could go home to the messiest house in creation and hug all of my kids.

If you have your health. Your child's health. A loving & supportive family. Even one good friend... then maybe you have to admit that you don't have such a horrible life. That you shouldn't look past the good parts of your life to focus on the bad. Maybe the stuff you complain about isn't so big and you should concentrate on being grateful for what you have.

Just my thoughts for the day...

Saturday, June 12, 2010

There's a Secret Sorority out there... and I never thought I would be a part of it

I remember the days when all you wanted to do was fit in with a certain group. When you saw 5 or 10 girls standing in a circle talking and laughing and then hugging good-bye you would watch as they all walked away from each other knowing that they all had something in common that you obviously didn't have. You wondered what that something was... and then you hoped that one day you would have it.

This happened in grammar school, middle school, high school and college. Sometimes it even happened at work. There were always those groups of girls and women who seemed to have a sorority going... and whether you knew it then or not, they probably felt the same way about you and your friends.

I had my own sorority of friends growing up. We were friends through grammar school, high school & college... through our first, second... and even third jobs... through marriage and kids... and we're still friends. We can still stand in a group of 5 or 10 of us and talk and laugh and hug good-bye... and I'm happy to have my sorority of friends, I love them.

22 months ago I joined another sorority. A sorority that you don't hear about often, even though the membership number is rising every day. A sorority that you don't even want to think about existing. You don't get to choose to join this sorority, you are chosen to join it. Your dues are unimaginable and exhausting but once you are in it... you are thankful for your sorority sisters.

We don't have a fun name like Alpha Sigma, or Kappa Delta and we don't stay up partying all night and our tests are most definitely a matter of life or death. Our rush weeks are different than any other sorority and our dues are much higher than others. Our main sorority's signature color is gold but we each belong to houses that have signature colors as well. My house's color is gray.

We are a sorority of Cancer Moms. We have been chosen to have children with cancer. We stay up at night and cry, we hug our kids through their pain, we worry silently (and all of the time), we know that our lives... and our families' lives and the friendships we had before... will never be the same.

When we see each other we don't have a secret handshake but we have a hug. If we can't give each other a hug because we are holding our children (or chasing after our children as the case may be so many times!) we give each other a smile. There is so much behind each hug and smile from one CM Sorority Sister to another. There's support, strength, love, prayers and an understanding that only another cancer mom can have.

We pace while our kids are in the operating room, we research a diagnosis so much that our eyes hurt but we keep reading in the hopes of actually understanding all that is about to happen, we we keep the first patch of hair that they lose, we hold them when they are in pain, we play with them when they are feeling good, we laugh with them when we want to cry, we live with Purell and hand sanitizer in every room of our homes and in every purse & diaper bag we own, we realize that 8 hours of sleep is an amazing gift and relish the few nights that we actually do get that much sleep, we put an insane amount of miles on our cars driving back and forth to the best hospital that we can find, we know that 100.4 degrees is a magic number on the thermometer and anything over that requires a visit to the hospital... no matter what time of the day or night, we have hospital bills that have balances higher than a doctor's student loans, we understand the meaning of loving our own beds... especially after a hospital stay on those lovely pull out chairs, we can go for a few days without a shower because we've been holding our kiddies in the hospital, we take lots of pictures and we know that despite the cards we have been dealt we are lucky because we have been given the gift of truly knowing that each day is so precious and should never be taken for granted.

Our sorority is one that no one wants to join and once you are in it, you would give anything in the world not to be a part of it, but I have found that if you do have to join it... you are in the company of truly amazing women.

Monday, June 7, 2010

An old e-mail... who knew it would be all too fitting for my life today

When I was pregnant with Mikey I joined an online message board group for moms that were pregnant and due the same month as I was, a December 2005 Pregnancy Board. We shared stories, fears, points of view and advice. After the babies were born we stayed on the message board but some of us branched off into groups. We shared the highs and lows of new mommy-hood and stories, fears and advice. We became friends.

I got a message from a friend that I made in that group a few days ago. Once I saw what she had written to me I didn't want to read it. I knew what it had said and I remembered sending it out. I remembered getting it in an e-mail from a friend, forwarding it to the group and printing it out and putting it on my refrigerator. We were living in Florida at the time. Ironically, I had sent it out on Valentine's Day, 2006.

When Mikey got sick you know that I didn't go back to that house for more than a few hours before he and I were flown up to NYC. I hadn't packed our stuff, I hadn't sealed the boxes, hadn't taken pictures off of the wall & I hadn't removed everything from the refrigerator doors. I don't know if this poem is in a box or if it was thrown out. And to be honest, I had forgotten about it... until last week when I got a message from my friend.

Like I said, it took me a while to read this poem... it meant so much to me back when I first read it and sent it out... and it means even more to me now...

I want to share it with you... and then I'm spending the day with my kiddies...

To My Child

Just for this morning, I am going to smile when I see your face and laugh when I feel like crying.
Just for this morning, I will let you choose what you want to wear, and smile and say how perfect it is.
Just for this morning, I am going to step over the laundry, and pick you up and take you to the park to play.
Just for this morning, I will leave the dishes in the sink, and let you teach me how to put that puzzle of yours together.
Just for this afternoon, I will unplug the telephone and keep the computer off, and sit with you in the backyard and blow bubbles..
Just for this afternoon, I will not yell once, not even a tiny grumble when you scream and whine for the ice cream truck, and I will buy you one if he comes by.
Just for this afternoon, I won't worry about what you are going to be when you grow up, or second guess every decision I have made where you are concerned.
Just for this afternoon, I will let you help me bake cookies, and I won't stand over you trying to fix them.
Just for this afternoon, I will take us to McDonald's and buy us both a Happy Meal so you can have both toys..
Just for this evening, I will hold you in my arms and tell you a story about how you were born and how much I love you.
Just! for this evening, I will let you splash in the tub and not get angry.
Just for this evening, I will let you stay up late while we sit on the porch and count all the stars.
Just for this evening, I will snuggle beside you for hours, and miss my favorite TV shows.
Just for this evening when I run my finger through your hair as you pray, I will simply be grateful that God has given me the greatest gift ever given.
I will think about the mothers and fathers who are searching for their missing children, the mothers and fathers who are visiting their children's graves instead of their bedrooms, and mothers and fathers who are in hospital rooms watching their children suffer senselessly, and screaming inside that they can't handle it anymore.
And when I kiss you good night I will hold you a little tighter, a little longer. It is then, that I will thank God for you, and ask him for nothing, except one more day..............

Wednesday, June 2, 2010

Birthday wishes...

I know it's been a long time since I posted here. I've been posting on Mikey's Caring Bridge site but that's been all about Mikey... I need a place to be about me. And what better day to start that than my birthday?

Did you ever notice how birthday wishes change so much as the years go by? When you're really little you wish for a pony. Then you realize you can't have a pony so you wish for that one special toy you want. As you get a little older you wish for that great pair of jeans you saw in the store and all of the other kids are wearing. Then you graduate from that and start wishing for electronics... when I was younger it was a CD player or a VCR... now it's an iTouch or gaming system. All of a sudden, in the blink of an eye, your wishes become... a full night of sleep, a day off from work and maybe even ::gasp::, a morning to sleep in.

The way we celebrate changes too. We start by celebrating with just our families then we have family and a few friends when we are really little then we graduate to classmate parties and then we have friends parties, then comes the 'co-ed' parties and then we have crazy nights out and then all of a sudden you find yourself saying 'I really don't want to have to cook on my own birthday' so you go out to dinner with a few friends. Yet, even after that really nice dinner celebration with friends you find yourself saying, cake with family is the best part.

Tonight we have dinner and cake with my mom's side of the family which will be great too. :) Nothing like all of us sitting around the dining room with an orange cake (requested by Mike... and how do I say no to that?) singing Happy Birthday 4 times because Mike wants to keep blowing out the candles! :) On Sunday we are going out to dinner with my dad's side of the family and that will be another fun celebration. I don't think we can sing 4 times in a restaurant but I'm sure Mike will try to get us to do just that! lol

The celebration I am most looking forward to though is this afternoon. K has a 1/2 day of school and Matt is coming to the house in between jobs and we are going to have lunch. Just the 5 of us. I am so happy to have that. It doesn't happen often.

I find myself with a lot of wishes this year. They vary in expense and seriousness. Some cost nothing, some cost a little, some a lot and some are priceless. Some wishes are practical, some are fun, some are outlandish and some are the deepest of wishes, the kind that you so desperately want to come true.

This year I wish for a full, uninterrupted, at least 8 hours of sleep; a Disney Dooney bag; new glasses; a new wardrobe... that doesn't consist mostly of sweats & t-shirts; one night a week of dinner out with my hubby and/or friends; a vacation for me at a resort on a white, sandy beach with great food and drinks; paid tuition to culinary school... and the time to go! And how can I forget? I wish for a new car!! Nothing crazy or fancy, but a car that I can comfortably fit my 3 kids (2 of which are in car seats!), double stroller & someone in the front seat all at the same time... in other words, something bigger than my Corolla! And I wish for a home of my own with enough bedrooms for my kids to all have their own rooms and a play room for them to all hang out in together. While I'm at it... I wish for a winning lottery ticket... not a $5 prize but I don't need a $25 million prize either... about $5 million should more than do it... I could buy a house, pay off bills & student loans, give gifts to family members, not have to worry about college for the kids and still have enough to take care of Mike's medical bills for a couple of years. And why stop there?? I wish vegetables were bad for you and chocolate could be a health food! I wish the weather was 70 and sunny most of the year... and that hay fever and allergies didn't exist!!

And I would give up all of those wishes and any hope of any of them coming true... for my biggest and deepest wish of all. The wish that I will be saying to myself as I blow out the candles on my cake tonight... I wish for my children and family to be healthy and happy. For Katie & Mikey and Timmy to grow old and for them to be happy and healthy for their whole lives. Of course that would mean that the doctors have about 14 hours left of my birthday to get answers and to find a cure for cancer... but I can dream and wish and hope, can't I?