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
Thursday, April 23, 2009
A Caring Bridge Site for Mikey...
Posted by Chrissie at 1:38 PM 0 comments
Saturday, April 18, 2009
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 procedureb: 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
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
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
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
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
Posted by Chrissie at 6:17 PM 6 comments
Tuesday, April 14, 2009
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
Posted by Chrissie at 10:47 AM 0 comments
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