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,
Thursday, April 23, 2009
Posted by Chrissie at 1:38 PM
Saturday, April 18, 2009
Main Entry: can·cer
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
Etymology: French, from Middle French, from route traveled way
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
Main Entry: re·al·i·ty
Inflected Form(s): plural re·al·i·ties
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
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...
Posted by Chrissie at 6:17 PM
Tuesday, April 14, 2009
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!
Posted by Chrissie at 10:47 AM
Wednesday, April 8, 2009
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!!
Posted by Chrissie at 4:42 AM
Wednesday, April 1, 2009
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!!
Posted by Chrissie at 9:53 AM