DISGUSTED with General Hospital

This is somewhere that I can share our journey and bring awareness to people that kids get cancer too. That's what I'm going to do... and that's what I thought one of the TV shows that I've been watching on and off for 20 years was going to do too.. boy, was I wrong!

Today, I turned on General Hospital. Michael is in the bath and Timmy is hanging out in his crib. I haven't watched in weeks but I heard that GH was taking on a storyline that I haven't seen on a soap opera before. They diagnosed a baby girl with cancer. I was amazed and so thrilled that some awareness will be out there. That a show was actually going where not many shows have gone before and possibly show at least a piece of what these kids go through.

In true soap opera fashion another child was hit by a car and killed. His kidney was a match for this baby girl. They are doing a transplant and she will be fine. The little girl's mom was crying that 'there's no time, if she doesn't get this transplant they are going to pump her full of chemo! She needs that kidney!'.

Seriously?? What kind of awareness does that bring? Why can't they show her in the hospital? Getting chemo? Wearing a cap (designer or otherwise) because she's bald? Walking around hooked up to an IV pole?

Don't get me wrong... the fact that they killed a child to give this baby girl a kidney is horrible. No child should die... being hit by a car or otherwise. They had the chance to do an amazing thing for the over 12,000 kids fighting this beast and the 46 children that will be diagnosed every day after this episode airs and they screwed it up.

I get that sick kids don't get ratings. I get that no one wants to see a baby go through chemo or be sick but General Hospital... you did a disservice to Michael and all of the other kids that are fighting for their lives. There are no 'quick fixes' for them. There are not many options other than 'pumping them full of chemo'.

They have done so much to bring awareness to AIDS, PPD, PTSD, rape, Breast Cancer, teen pregnancy and so many other issues... why not help to bring awareness to the kids??

It is a disgrace.

That's me on my soap box... I just had to vent... and I hope you all forgive this rant.

Love & hugs,
Chrissie

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.

Go GOLD!!

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.

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.

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...

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.

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..............

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?

Multiple tissue reading....

A friend of mine sent this to me and I wanted to share it with you. I know some of the people who come here to check on Mike also have children suffering from this awful disease and I wanted to make sure that they all know how special they are. **Warning... this is a multiple tissue reading...



The Chosen Mothers
Most women become mothers by accident, some by choice and planning, a few by social pressures, and a couple by habit. Did you ever wonder how mothers of children with a life threatening illness are chosen? Somehow, I visualize God hovering over earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger...
"Beth Armstrong, son, Patron Saint Matthew"
"Marjorie Forrest, daughter, Patron Saint Cecilia"
"Carrie Rutledge, twins, Patron Saint Gerard."
Finally, He passes a name to an angel and says, "Give her a child with cancer. "The angel is curious. "Why this one, God? She's so happy." "Exactly," smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel." "But, does she have patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it. I watched her today," said God. "She has that feeling of self-independence that is so rare and necessary in a mother. You see, the child I'm going to give her has it's own world. She will have to make it live in her world and that's not going to be easy." "But Lord, I don't think she believes in you," said the angel."No worries, I can fix that. This mother is the perfect choice. She has just enough selfishness." The angel gasps, "Selfishness? Is that a virtue?" God nods. "If she can't separate herself from this child occasionally, she'll never survive. Yes, here is the woman I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step just ordinary. I will permit her to see clearly the things I see... ignorance, cruelty, prejudice... and allow her to rise above them." "And what about her patron saint," asks the angel with his pen poised in mid-air. God smiles and says..."A mirror will suffice." -Erma Bombeck

My name in print...

Good morning everyone! :)

I got a text this morning from Aunt Ei congratulating me because I made the comments section of the NY Daily News! It seems that, while they shortened my rant, they printed the complaint that I had about Kelly from Real Housewives New York! Ei is hoping for a response... I am mad that they shortened it!! It was a good rant!! LOL

Here is what I sent to them:

My 3 year old son is a patient at Memorial Sloan Kettering Cancer Center. On July 1 we were in the Pediatric Day Hospital and saw Kelly Bensimon in the playroom. I really wish that someone would tell her that wearing a see through mini-mini white lace outfit and prancing around like a supermodel was inappropiate. There are moms and dads in that place that haven't slept in days, haven't taken a shower for longer than 10 minutes at a time, aren't sleeping in their own homes, are spending days and weeks away from their families, are worried sick about their children and are going without many things while she is sitting there silently looking for attention and flaunting herself. Kelly, there is a time and a place for you, Sloan Kettering's playroom was not it.


This is what they printed... granted, it gets the point across but still... lol

Put some clothes on

Rockaway Beach: We recently saw "Real Housewives of New York City" star Kelly Bensimon in the pediatric hospital at Memorial Sloan-Kettering Cancer Center, where my 3-year-old son is a patient. Someone should tell her that wearing a see-through, mini-mini, white lace outfit and prancing around like a supermodel was inappropriate.

Christine L******-W********

I know, I know... I should just be glad that any time anyone Googles her name that will come up but still... I think my rant had a point. LOL

Well, thanks for reading everyone! :) Hope you are all doing well! I am going to get Katie ready for her first day of camp and get Mike ready for the new summer therapy schedule! I hope you are all doing well!! :) Please keep the prayers and good thoughts coming!! :)

Love,
Chrissie

Do you ever feel a little neurotic?

There are so many restrictions placed on and orders given for Mike by various doctors... not too much sun, not too cold, no community water, be careful of the sand on the beach, try not to let him get too many cuts for fear of infection, watch what he eats, make sure he gets enough sleep, watch for bruises... there are so many things that sometimes I feel like I am becoming neurotic!!

We have a new deck. It is built with Trex so there will be no splinters but since Mike isn't walking, his knees and feet (from the dropfoot) are being dragged along so I put him in pants and socks and sneakers! It's July and the poor kid is in jeans, socks and sneakers! And then when he comes to me and I pick him up I feel like he is warm so I get the thermometer. He doesn't have a fever, he's hot because he's in jeans and socks for crying out loud! I am forever washing his hands and checking him for cuts or bruises. And I can't even tell you how anal I am about what and how much he eats now. Since his diet is expanded I am constantly on top of how much he is eating! I am forever checking all of the meds to make sure we don't need refills or anything. I have never been super-organized but now I have file-folders... Rx receipts, consult co-pay receipts, insurance papers, lab results, path results... every topic has it's own folder.

I have found that I am on top of Katie much more now too. I feel like she is in need of so much attention but doesn't know how to go about getting it in a good way these days so she resorts to whining or saying things that she knows she probably shouldn't or even by being hyper and jumpy. I feel like I am constantly correcting her and on top of being frustrated by her behavior, I am totally exhausted so it comes out as yelling. I hate that. Every day I try to think of things to do with her and for her to make her not feel like she has to act out. Every day I try to talk to her and spend at least a few minutes with her... and just her. I need to do these things. I need to have her know that she is ok and that, despite all of the attention that Mike gets she is loved and is being taken care of just like before.

I am constantly worried and constantly thinking and constantly wondering where this neurotic behavior came from... Do all cancer moms or moms of kids with life-changing illnesses get like this? Or am I the only one that does all of this worrying, thinking and wondering?

Overwhelmed...

***Hi... I hope my post doesn't come across nasty, it's just that there is so much going on that there isn't any good way to answer the question, 'how is Mike?'. Words hold a lot of value to me and the people who ask about him are greatly appreciated and I am so thankful to those who ask about him. I just need people to know why the get the same response almost every time they ask about him! Please keep the prayers coming!

I think that the title of this entry definitely says it... I am feeling overwhelmed. The feelings and thoughts I am having are overpowering me. There are details that I am not posting, things that I am not discussing with too many people and things that I am not adding to the Caring Bridge site just because I need time to digest them. I know that is so hard for some people to understand but to another mom that is going through this it is completely understandable.

The great news is that Mike's scan on Wednesday was stable! I was thrilled, I am thrilled... but at the same time I was saying, 'Ok, we've been on this chemo for 6 months, when are we going to see signs of the disease shrinking?'. I feel HORRIBLE complaining about any of it, because believe me, I am beyond thankful and thrilled that the cancer is not growing but I am ready for shrinkage. I am ready for him to be running around and playing like a 'regular' kid again, chasing his sister and his sister needing to kick him out of her room. I am ready to register him for school and bring him to the beach. I would love for him to be teasing his sister and challenging her to games of tag or hide and seek and actually be able to play them on his feet. But for now, I am happy with stable. I am happy that we have no growth of the tumors. I am holding onto that for the next 3 months until our next scan.

Now, even through wanting all of those things that I just mentioned, I am grateful for every day that we have, because believe me, if this journey has taught me anything, it is that life is too short and the children that we are blessed with are the greatest gifts that we could ever be given. We need to do as the saying says and "Live Well, Laugh Often and Love Much". And I truly am trying to embrace the "To see the rainbow you have to live through the rain" motto too... There are days that it is easy to embrace that... other days, not so much.

I am thankful for the family that we have that supports us so amazingly. It is only because of them that we are able to live up here and get Mike the treatment that he needs. I am thankful for the friends that we have, especially those true friends that are always there for me and know that when I answer the question, 'How's Mike doing?' with the standard, 'He's doing ok' answer, there is so much more behind it.

I mean really, let's face it... how the hell do you really answer that question? I don't know what to say to people when they ask that question. "How's Mike doing?" How do you answer it? I know that the person asking probably doesn't want to hear a long, drawn out answer, so I say, 'He's doing ok'. Now, please don't get me wrong, he is doing ok, in fact there are days that he is doing better than ok and there are days that he is not doing anywhere near ok... but there is so much more to all of this than can really be told in the answer to that question. He has cancer and while I have to deal with it every minute of every day, it is not all that I want to talk about. It is not all that anyone wants to hear about. "He is doing ok" and "we are taking things one day at a time". I guess that's all I can really say. And really, while I am so touched that so many people ask about him honestly, I don't want to have some long, drawn out conversation with everyone who asks about Mike. I don't want to go on about how I hate that this is our 'new life', about how Mike is on this chemo and we have no idea what kind of tumors are growing in his head and spine so while chemo can normally be considered a crap-shoot, it's even more of a crap-shoot now. I am certainly not going to tell everyone who asks about Mike or me that I spend days and nights worrying and holding back tears because I can't be with Katie enough or that I get sick because Mike mispronounced a word and what if that means the tumors are changing or then there's the nights when I worry about what will I do about Mike going to school, where will he go, when can he start, or even just thinking about the fact that I am a cancer mom now and after one MRI, life for me and my family has forever been changed can keep me up at night. And certainly no one wants to hear about the medical bills or the fact that I now have to deal with the idea that Mike will forever be known as a cancer patient and how will we, as a family deal with that? What will we do? Will we ever be able to move out of the city again because every move that we make has to revolve around his care and his treatment? Will this EVER feel like a 'normal' situation to us? Can this really be our new reality? These things can keep you up at night... well, those things and once you throw in a chemo protocol or a fever or, our latest mess, c-diff I think you can pretty much count on your hands how many full nights of sleep I have gotten in the past 9 months.

So, please know that when you ask me "How's Mike doing?" and I say "he's doing ok" the answer behind it is, 'He really is the strongest little boy I know. Even when he is feeling yucky, he is an amazing kid. And that while we have no idea what is going on with Mike and we have no idea how long it will take to get him well, we do know that we are in this fight for the long haul and I will spend as many days and nights worrying and I will do whatever I have to do to get Mike to the point that he gets better and beats cancer.'

So, add that to the feelings and thoughts that I am experiencing after conversations with the doctors on Wednesday after Mike's MRI and I think overwhelmed might be an understatement for how I am feeling.

Anyway, thank you so much again for your love, prayers and support. They all mean so much to us!

Love,
Chrissie

Quick note about Caring Bridge!

Hi everyone...


I am so thrilled that so many people have come to visit Mikey's Caring Bridge page. I just want to make sure it's clarified that the reason the page has been moved is because there is a lot going on medically and I want to be able to update everyone knowing that the stories, pictures and information I share are safe and so that I know that who is checking it.
I had someone sign into Caring Bridge with the name memememe, me and the e-mail address me@spam.la. I blocked it. I'm sorry but I really do want to know who is reading about Mikey. I want to know who is looking at his pictures and who is praying with us and supporting us. I want to be able to include all of our supporters in my good thoughts and prayers too and I can't do that if everyone doesn't use their names.
I hope you all understand why I blocked that e-mail address and would like everyone to use their real names. I am sure whoever used it really does care and wants to keep updated on Mike so I hope that person understands why I blocked them. Please follow Mike's story using your own name, I am sure that I will be glad you are there.

~~Chrissie

A Caring Bridge Site for Mikey...

Hi everyone...

Well, after a lot of thought I have decided to move Mikey's story to a Caring Bridge site. This will allow me to post more pictures freely because people need to sign in to view the site and you can all still continue to leave comments and read any time you would like. Not to mention the fact that you can sign up for e-mail notifications so you know whenever there is a Mikey journal update. Caring Bridge will also give me the opportunity to give author privileges to Matt and my BFF, J, to update if there is ever a time that I can't.
I will keep updating here with general family stuff and this will be a place for me to release. I will use this blog for me. Mikey's illness needs it's own place and I think that the Caring Bridge site will be a great one. I am also keeping Mikey's background story here so anyone can reference it and catch up whenever they want.
The thing about Caring Bridge is that you have to sign up... it's free but you have to sign in with your e-mail address and create a password. This will help me to have peace of mind that my kids pictures will be ok too.
Here are the ways you can get to Mikey-Mike's Caring Bridge site.. just click on any Caring Bridge word on here, click the picture of Mikey-Mike on the right side of my blog or copy and paste this... http://www.caringbridge.org/visit/mikeymikew
Well, I will be back here to update about me and my family and I will be at Caring Bridge updating about Mikey! For a while I will post here when I post at Caring Bridge in case you all forget to go there.

Thanks so much for all of your support, good thoughts and prayers!! See you at Caring Bridge for Mikey and here for me!! :)

Love, hugs and prayers,
Chrissie

Definitions and defining moments...

Cancer
Main Entry: can·cer
Pronunciation: \ˈkan(t)-sər\
Function: noun
Etymology: Middle English, from Latin (genitive Cancri), literally, crab; akin to Greek karkinos crab, cancer
Date: 14th century
1capitalized a: a northern zodiacal constellation between Gemini and Leo b (1): the fourth sign of the zodiac in astrology — see zodiac table (2): one born under the sign of Cancer
2 [Latin, crab, cancer] a: a malignant tumor of potentially unlimited growth that expands locally by invasion and systemically by metastasis b: an abnormal bodily state marked by such tumors
3: something evil or malignant that spreads destructively
4 a: an enlarged tumorlike plant growth (as that of crown gall) b: a plant disease marked by such growths

Routine
Main Entry:1rou·tine
Pronunciation: \rü-ˈtēn\
Function: noun
Etymology: French, from Middle French, from route traveled way
Date: 1676
1 a: a regular course of procedure b: habitual or mechanical performance of an established procedure
2: a reiterated speech or formula
3: a worked-out part (as of an entertainment or sports contest) that may be often repeated ; especially : a theatrical number
4: a sequence of computer instructions for performing a particular task

Reality
Main Entry: re·al·i·ty
Pronunciation: \rē-ˈa-lə-tē\
Function: noun
Inflected Form(s): plural re·al·i·ties
Date: 1550
1: the quality or state of being real
2 a (1): a real event, entity, or state of affairs (2): the totality of real things and events b: something that is neither derivative nor dependent but exists necessarily
3: television programming that features videos of actual occurrences (as a police chase, stunt, or natural disaster) —often used attributively
— in reality
: in actual fact

________________________________________________________________

These are 3 words that I really, honestly, never thought I would be using together when I spoke about one of my children. But, reality is that my son has cancer and our routine now consists of many Dr appointments and trips to MSKCC. It isn't easy, it isn't fun and it isn't anything the way I thought motherhood would be. I never thought that I would be a 'cancer mom'. It never occurred to me that all of a sudden the cancer monster would invade my family, let alone invade my child. Since I can remember, I would cry while reading any story in any paper or magazine about a child diagnosed with cancer or some other horrible disease. I would see a commercial for St. Jude's and weep. I would think about how agonizing every decision those parents made must have been, but I never thought I would be one of those moms that had to decide anything even close to that. Pediatric cancer was a horror and a nightmare and something I read about, but I never thought it would be one of my kids that got it. The statistics were always there... 12,000 kids diagnosed with cancer every year, about 45 kids every day. I couldn't win a 1 in 1,000 ticket drawing at Katie's school, what were the chances of one of my kids being one of those 12,000??

Now, Mike is one of those kids. And now Matt, the kids and I are that family that you read about. Katie is the big sister that is spoken of so wonderfully, she is so good and attentive to Mike, she knows way much more than we care to admit she does and she's definitely too smart for my own good. Matt and I are the dad and mom that have to make those agonizing decisions and watch the Drs and nurses poke and prod our little boy while I hold him still.

Every day that I am at MSKCC with Mike there are a ridiculous amount of families who are affected by pediatric cancer there. Most of us have the same look about us. The 'we are so exhausted that we don't know how we are functioning but we'll put on a happy face, pretend we all look great and do what we have to do so that we can go to bed that night and get up the next morning.' Now, some of the moms there do look great, they look so put together and look like they are dealing with things so much better than I am. I wonder if I'll ever get to that point but for now, I am content with the look I mentioned earlier because it means I'm not melting down. And these days, that's a plus.

Last week was a defining week for me. I came to realize that as much as I knew it was a possibility and as much as I knew Mike was much more of a 'fragile' child than he lets on, it wasn't until last week that I accepted it and realized that this was reality. A simple stomach bug turned into an overnight hospital stay, 4 day-long visits to the day hospital, countless liters of IV fluids at the PDH and a 3-liter backpack of fluids at home for the weekend... not to mention the stomach virus caused c-diff and he is now on a 14-day Flagyl schedule. A bug that could be as simple as a 12 to 24 hour thing for some kids turns into a week long nightmare for a kid with cancer. This is reality. The fact that I talk to the people at the PDH more than I talk to some of my friends is reality. Going to the PDH has become a routine for us.

It's funny, I know so many adults that have cancer and a lot of them are so miserable and sick... the kids are amazing. They almost look forward to going to the hospital. Don't get me wrong, if it was all misery there I am sure the kids would hate it but they have shows and clowns and activities at the PDH every day. And the kids are so involved in their own care... I mean really and truly actively involved... Mike has gotten comfortable enough to help draw his own blood from the mediport, help flush the line and helps to take his own blood pressure! They laugh and play and don't worry about the next wave of nausea like adults do. That helps so much, that innocence that we as adults long for again really does help them through this in such a huge way.

One of the things that people say that really does bother me is that, 'This will become normal for you.' This will never be normal. In fact, by definition cancer is abnormal and evil. It isn't normal, it shouldn't be normal. Unfortunately, for this unknown period of time, instead of a daily routine that includes going to the stores and a 'mommy and me' or the park after dropping Katie off at school, we go to MSKCC. Mike gets his blood pressure taken so often not only does he stick out his arm but he places the stethoscope where it goes on his arm so the NP or Dr can listen. He helps put the vials in the vaccutainer to get his blood drawn from the mediport, he helps to flush the line and he tells the Dr which ear to check first. This is routine for him. Routine and reality... but definitely not normal. I told our favorite NP, M, the other day... I could cry (and believe me, I do) that this has become his routine, that he knows enough what comes next in a physical exam and that he helps with things like accessing his mediport, collecting blood and taking his own bloodpressure but at the same time I am relieved that each visit isn't this horribly scary time for him anymore. His getting more comfortable truly is a mixed blessing. And I hate that too. To be honest, I hate a lot of things about this. I hate that Mike is sick, that he won't have a true little boy childhood, that this time in his life is all about Drs and meds and tests. I hate that Katie has to sacrifice so much, that she was uprooted from a community she really loved and had to go through so many changes in such a short amount of time with virtually no notice, that in such a small span of time she has had to grow up so much. I hate that I am perpetualy exhausted, constantly worried and forever stressed but it has become reality and I deal with it as best as I can. I look for signs of his counts dropping constantly and I forever watch the clock to make sure he gets the meds that he needs and as long as he is playing and laughing I will more than gladly do the worrying for him. If I could take this all away from him I would in a heartbeat. I would give him a childhood free of needles, meds and daily trips to the hospital. But I can't.

So, I do my crying in the shower, thinking and stressing in the bedroom after the kids are in bed and spend my days putting on a happy face. I do the best I can and hope that is enough to get him, and Katie and Matt and myself through this. And with the support of our family and friends, who have been so absolutely amazing by the way, I know that we can get through this. I hope and I pray that the families that have to deal with pediatric cancer get through it, that the children are ok and that their families have a support system as wonderful as ours. I pray and hope constantly that the decisions Matt and I make are the right ones, that our family and friends know how much they mean to us and how much we appreciate all that they do for us, that Katie is as ok as she seems to be most of the time and that if she is not she will talk to us and not inherit her mother's knack of keeping things all bottled up inside and most of all I hope and pray that Mike gets well and remains as happy as he seems to be most of the time, that the abnormal and evil cancer is killed in his body and that he gets better and grows up to be a healthy, strong and wonderful man.

Please keep Mike, Katie, Matt & I in your prayers, please pray that for our amazing support system, for our Doctors and nurses and for all of the kids that are suffering and their families. Hug your kids, kiss your spouse, call your mom and dad... and please just pray and hope with me...

Love,
Chrissie

A quick update on Mike...

Hi everyone...

Well, I know I promised to write more before this but it has been an insane week. We ended up staying in the hospital overnight on Wednesday only to be sent home Thursday and go back in on Friday morning because he was still so sick overnight Thursday.

I was glad that I stuck to my guns and insisted that we not leave inpatient without leaving a stool sample because on Friday while we were there the Dr came in to tell us that he tested positive for Rotavirus AND C-Diff!! It seems that he had Rotavirus and that by emptying his belly it left the C-Diff there to grow. And grow it did...

Luckily we were able to bring home on an IV weekend backpack of fluids. It was so odd having an IV in him at home but made me feel better because I knew that I could handle the output better knowing that there was a constant flow of fluids replacing what he was losing. It was also so wonderful to be at home for Easter so that he (and I) could enjoy our day as much as possible with Katie and the rest of our family.

We are up at my in-laws for a few days now visiting with them and Matt. Thankfully today he is doing better... definitely still cranky but he's ok. We were able to take the IV out yesterday and we have to go back on Friday for more blood work and to start chemo again. I swear, the 28 days feels like 28 seconds...

I hope you are all doing well and that you all had a wonderful holiday! I will update again later in the week. Thank you all for your thoughts and prayers... please keep them coming!

Love,
Chrissie

It's been a LONG few days...

Hi everyone...

It's 4:48 on Wednesday morning and I am up... again... You all know Mike has been a horrible sleeper through all of this but Saturday night around 1 am the roller coaster really started... and it hasn't stopped yet.

Katie started with a stomach bug on Saturday afternoon and Mike picked it up Saturday night. I wish they would share the TV clicker and toys as well as they shared this stomach bug! Katie's came with a fever but Mike's temp didn't start going up until Sunday evening. Sunday night at 9:30 I found myself driving into MSKCC's Urgent Care because of his temp and the fact that he couldn't even hold water down anymore.

We were there all night and all day on Monday. They released us after giving him over 1 liter of fluid over the course of the 20 hours we were there and told us to come back Tuesday morning so we didn't have to stay overnight. We were there from 8AM to just about 1PM today. He was doing so much better at home this afternoon. He was playing and laughing... and then at 3AM it started again... the diapers needed to be changed and he got sick again. The pediatrician on call said that we can wait until 8 when the neuro-oncology team comes in to call and talk to them but we will probably have to go back and be seen today. I had assumed that would be the case, I am just glad he didn't tell us to get in there right now.

So, now I wait and hope and pray he doesn't get sick again and try to figure out how I can be at the hospital with Mike while being at Katie's school Passion Play that she is in this morning. I hate that part... I feel like in order to take the best care of Mike there are too many times that I have to ask Katie to sacrifice something. I felt like a horrible person on Monday when I was at the hospital with Mike and she had to go to the doctor but I couldn't take her. My mom took her and while it is amazing that my mom has been so great, I should be the one to take her to the doctor. I am the one that is supposed to be there when she is sick and I couldn't be there. I HATE that. I HATE that she is only 7 and is learning already that there are disappointments like that in life. I am still going to try to figure out how to get to her play but if I can't, Matt will be there. He will take tons of pictures and I will talk all about it with her. It won't be the same and it won't be the way I, or she wants it, but I really don't know what else to do.

Well, I am going to try to get an hour more of sleep so I can be up and ready to bring Mike to the hospital in the AM. I will update from there later.

Hope you are all well. Please pray that Mike feels better soon and that things settle down here for us soon!!

Love,
Chrissie

To stand or not to stand...when it comes

Hi everyone...

So anyone on Facebook knows that Mike had PT and OT yesterday. It was a big day for him. The physical therapist put him in the stander. There had been talk of a stander before and they have expressed the idea of having Mike use one before but I had never heard of one before all this. And I certainly didn't think Mike was ready for one so when they came out and told me he was in it I was shocked! And not only was he in it but he seemed to like it!!! I can't watch him in the treatment room when the therapists are working with him but I could tell he was doing ok. Yesterday was going so much better than the normal PT/OT appt, he was doing his usual crying and yelling in the treatment room but there were more quiet time yesterday than normal. When L & M (the OT and PT) came out to talk to me while R (the other PT) was working with him they told me that he had been in the stander for 25 minutes! I couldn't believe it!! He was weight bearing for 25 minutes!! Sure, the stander provides a great deal of support but he had to be on his feet and he was tolerating bearing weight!! I was so thrilled. They brought him out in the stander. I have to be honest, I was so glad my dad wasn't there. It was hard to see for the first time. I mean, you know your kid can't walk and you know your kid has cancer and that this stander is a great thing for him because he can be up and it can help him gain the confidence that he needs to stand and start walking on his own again but it was hard. I had to fight tears because he needed to see me happy and proud that he was standing but deep down (well, honestly, not all that deep down, pretty much right on the surface with the lump in my throat) I just wanted to cry. This is what he came out in...



The fact that he stood for 25 minutes in it is wonderful though. If this thing is going to help him I'll do whatever I have to do to make sure he gets to use it there and that he gets one at home if he needs it and the therapists think that it will help him. We go back for more PT and OT on Thursday so I will pick their brains more about it then.

A few pieces of good news came out of our exam up in oncology... his counts are great again!! They are holding strong and all in the normal range!! :) YAY Mikey!! :) He did amazingly well with the Doctors also!! This was the first appointment in 6 months that he didn't scream the whole time, he actually helped the Dr with the stethoscope and blood pressure and let them look in his ears without screaming and crying and flailing all over the place! It was a good visit with oncology yesterday. Also, they ran the blood work that the GI needed done and ran a hormone panel again because of some strange hair growth on Mike.

Katie has been doing really well... she is definitely starting to show signs of the 'my sibling is sick' syndrome but all in all she's a great kid and isn't giving anyone any problems. I feel like I need to spend a little more one-on-one time with her so I'm trying to do that as much as possible. She has some great little friends and is such a happy kid... Matt and I are so lucky that she is so great and adjusts so easily! :)

Now, onto business... don't forget about the St. Baldrick's Foundation event at the Irish Circle in Rockaway on May 30th!! Click the dancing leprechaun on the top right of my blog and donate or get the info to come spend the day with us!!

I hope that you are all doing well!! :) Please keep those prayers coming... my little man and our family need them!!

Mike's GI appointment

Well everyone, we had the GI appointment yesterday. I was a wreck going in because MSKCC jumped the gun and said to be prepared for feeding tube talk. I was so relieved when a feeding tube didn't even come up yet. The Drs and nutritionist at NY Presbyterian were wonderful! They were so easy to talk to actually listened. They offered advice and gave me tips on how to get Mike to eat better and more.

We have to run a bunch of tests, allergy testing for milk and soy and a whole lot of stool samples. Thankfully they agreed to let us wait until Tuesday when Mike needs to be accessed at MSKCC to get the blood drawn for the testing. I also need to keep a 3 day feeding diary and they gave me trials of a couple of some supplements to add to Mike's food so that we can get added calories into him. Don't get me wrong, I know that if the tests don't come back with good results we will probably have to re-visit the feeding tube discussion but for now, it is on the back burner. And I am very comfortable with that.

Matt is heading down today so that I can go to a school fundraiser tonight. Katie is thrilled to get some Daddy & Katie time... she has already asked if she can stay up later so that she and Daddy can hang out since I'm not going to be home and after Mike goes to bed! :)

Well, that's all for now! Thank you all for checking in!!

Have a wonderful weekend and please keep those prayers coming!! :)

Love,
Chrissie

Daddy's Shaving his head!!

Ok, everyone... I'm using the power of the internet to raise money for an amazing cause!!

St. Baldrick's Foundation raises money for pediatric cancer research and they do it in an amazing way. There are events all over the country where people come and shave their heads in support of kids suffering from cancer. This year, Mikey-Mike is the honored child at the event here in Rockaway Beach, NY at the Irish Circle. The event is taking place on May 30th at 3 PM. It's going to be an amazing afternoon!! :) The volunteers are working so hard on the event and it's such a wonderful charity to support. We are so blessed to be a part of it.

Now, here's where you come in... On the right hand side of my blog you will see this picture...... after you read this post click on it! It will take you to Matt's St. Baldrick's Foundation Participant page!! :) Yep, that's right, Matt is shaving his head for Mikey-Mike and all the other kids that are suffering from cancer.

There are so many ways that you can help... you can donate by clicking the Donate Online button on Matt's page, you can participate in an event near you, you can come out that day to show your support and meet Mikey-Mike, and above all, you can please keep Mikey-Mike and all the other kids suffering from cancer in your prayers. So, please, if you can donate we would appreciate it! Just follow the dancing St. Baldrick's Leprechaun on the right to Matt's page and click on the donate online button!!

We hope that you can come out and support such a great cause!! :) Hope to see you on May 30th!! :)

Love,

Chrissie