Monday, July 6, 2009

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!! :)


Sunday, July 5, 2009

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?

Friday, July 3, 2009


***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!