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.