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 deliberatio
Monday, July 6, 2009
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...
Posted by Chrissie at 4:54 PM
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 inappropiat
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-Kette
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!! :)
Posted by Chrissie at 7:48 AM
Sunday, July 5, 2009
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?
Posted by Chrissie at 10:13 PM
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!
Posted by Chrissie at 9:36 PM
Sunday, May 3, 2009
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 firstname.lastname@example.org. 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.
Posted by Chrissie at 6:46 AM
Thursday, April 23, 2009
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,
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
Friday, March 27, 2009
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!! :)
Posted by Chrissie at 8:07 AM
Thursday, March 26, 2009
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!! :)
Posted by Chrissie at 10:54 AM
Wednesday, March 25, 2009
So, after our eventful weekend we had another appointment on Tuesday in the PDH, PT & OT appointments AND the Ophthalmology visit.
As soon as we got to MSKCC we had Mike's blood drawn. Getting it done first thing in the AM means no waiting in the IV/Blood drawing rooms and the pedi lab doesn't get backed up so the results come back rather quickly. The poor kid HATES it. We have a system though... whoever comes in w/ me (usually my Dad) and I will have a job... one of us stays w/ Mike and the other checks him into the IV room. The girls in the IV room know to talk to the lady that does the fingerstick and have her get everything ready so all we have to do is walk Mike in, sit in the chair w/ him and hold his finger out. He SCREAMS the entire time though. Accessing is worse b/c you really have to hold him still for that needle. We have found the way that works best to hold him down for both. I know it doesn't hurt him (the fingerstick is a pinch and he has Emla cream on when we access him) but it is still hard to hold him down while they get the blood they need.
Then, as soon as we were done that, Mike had PT & OT. They are hard on him. His muscles are so weak it hurts and he is so scared. It's like he has lost his center of balance and is so afraid of standing. He cries when they take him to the room to 'play' and he cries almost the whole time in there. I hate sitting there in the waiting room b/c you just hear him crying and yelling for me... It is so hard when you know he needs the therapy and you can't be there to help him. :( They said that he did do some weight bearing so that's a plus! His upper body strength has improved also. The tremors in his hands have gotten better, they are still there but not as often. The not walking really has me concerned. Is it the effects of the chemo? Is it the tumors? We have no idea, and probably will have no idea so I'm doing a lot of hoping & praying that he starts to gain more strength in his legs and starts to walk again.
Anyway, once the therapy sessions were over we went back up to the PDH to see the Drs. We were brought back quickly b/c it was 11 and we had a 12 o'clock appt w/ Ophthalmology. His bloodwork came back great but it turns out he had some fat in the stool that they cultured. They said they were glad we have an appt on Thursday to see a GI doctor at NY Presbyterian/Cornell because that was a possible malabsorption issue and that I shouldn't be surprised if they wanted to re-visit the talk of a g-tube. Needless to say, I am really anxious about the appointment tomorrow. I will update on that when we get home or on Friday morning.
After seeing the Dr in the PDH it was time to go to Ophthalmology. Well, this was the BEST appointment of the day!! :) The Dr didn't see any optical nerve swelling anymore and he said the muscles looked great and are working the way they are supposed to. We don't have to go back to him for 6 months!! :)
It was report card day at Katie's school yesterday too!! I was going to go at night but as Matt, Mike & I headed home I decided to stop and get Katie's report card. Her teacher said wonderful things about her. She told me that she really has adjusted so well and is friendly with everyone! She does excellent work and her grades were excellent!! :) I am so proud of her doing so well through all of this. And, to top off the good news about Katie... her top left tooth fell out!! :) She was THRILLED!! It was making her crazy but she was too chicken to pull it out herself! LOL
And, onto other news... I got a call from Dana Farber Cancer Center. I don't know if you remember or even if I posted it here but I sent Mike's pathology and clinical papers to Dana Farber for a 2nd opinion on both the pathology diagnosis and treatment/clinical issues. They said that based on what they have done so far, they find the same as MSKCC... we are dealing with an unclassifiable lepto-meningial (spine) tumor. The Dr I spoke to was very nice and very willing to talk to me. I gave them permission to talk to the hospital in Florida and get any and all tissue that they have and that I would sign whatever was needed for that so that between DF & MSKCC all of the tissue taken in the 2 biopsies done in All Children's would be up here. She said that they would continue to work on the slides that they have not stained so far and will call me in the next week or so with a final answer. The Dr I spoke to said that at this point she doesn't think that they are going to identify this tumor and that it would end up being officially unclassifiable. I am pretty upset about it. Don't get me wrong, I knew sending it to them would most probably we would most probably get this answer but I hoped & I prayed that they would see something that MSKCC, All Children's and Duke didn't. I have spoken to many people about different places to send tissue and summaries to and I have other places in mind but I am going to wait for the offical word from DF when they are totally done with looking at everything.
Well, that's it from this end until after the GI appointment! I hope you are all doing well... Please keep the good thoughts and prayers coming!!
Posted by Chrissie at 7:41 PM
Sunday, March 22, 2009
Good Morning everyone,
I know, I know... I've been slacking again. I am sorry. Thank you all for sticking with me and checking in to see what is going on with Mikey... and all of us. I hope that you are all enjoying your weekend. It's been an interesting week and a half for us here.
As you all know we got wonderful news on March 9. It seems that the Temodar has been keeping the tumors from growing. The MRI was stable :) Since his counts were great that day we didn't have to go back to the PDH until March 18th when Round 3 of chemo was scheduled to begin. When we got there on 3/18 Mike was flirting with a fever. His temp was 100, 100.2, 100.1, 100.4... and he was EXTREMELY cranky. I mean, Mike can be cranky on a regular basis but this was CRANKY cranky. So, they drew blood and more blood and took a stool sample and sent us home without chemo. I was able to give him Tylenol at home through the day and the fever stayed down. By Thursday morning at 9 it was back to 98 and all was ok.
When I took Mike in on Friday his counts were significantly lower than they were on Wed. The theory is that he was fighting whatever was going on and now we are getitng a clearer picture of his counts. His WBC was 4.2, HGB 13.3, Platelets were 180 and ANC was 1.4. All still in the normal range (except the ANC) but there was a significant drop in all of them since the 9th. They weren't low enough for us to start chemo though! The Dr called in the prescription to the children's pharmacy down the block from MSKCC that compounds the chemo and I was able to pick it up in less than an hour. Since he seemed to be doing ok we drove up to my in-laws for the weekend.
Then came Sat night... I put Mike to bed and then around 11 I heard Mike coughing. It was that seal bark that can only be one thing... the croup. I went back downstairs to get a couple of things and when I walked back in the bedroom and heard him breathing. Now, Mike is the kind of kid that when he is sleeping you need to go put your hand in front of his face to know he is breathing. It was a heavy breathing with a whistle-type noise at the end of the breath. So, of course, I paniced and called MSKCC's urgent care. We had seen the pediatrician on call in the PDH before so she knew who Mike was and was asking all sorts of questions. We decided that since his breathing was heavy I should bring him in. So we started to pack up. Matt had to work a double shift in Manhattan on Sunday so I had told him that he should just stay at his mom's with Katie and I would go in myself but he wanted to come down with us. He dressed for work b/c we figured we'd be there a while, left Katie at my in-laws sleeping and drove to Manhattan. We weren't there too long and the Dr said that while his breathing was heavy there was nothing in his lungs so we were sent home. Poor Matt stayed in the waiting room chairs sleeping so he could just go right to work at 6 while Mike & I headed back to Rockaway to my mom's at 3 AM.
He is doing much better now so that's a plus. He took the chemo for the whole 5 nights like a champion!! :) So, we have another round of chemo in April and then we have the next MRI on May 6.
I have more to tell you all but I'm going to do it in the next post... I hope you are all doing well! Please keep those thoughts and prayers coming...
Posted by Chrissie at 11:11 AM
Monday, March 9, 2009
Mike's counts were wonderful again today. The doctors are so pleased with how he is doing!
Mike's MRI went well. They were able to get him the anesthesia and he fell asleep with no issue. He is such a champ! He woke up on his own and as soon as he did he was asking for Cheerios and water! LOL
So, we were able to wait at MSKCC while Dr. D went to look at the MRI and we got great news when he did!
The MRI was unchanged! The Temodar has seemed to stop the growth of the tumors!
Thank you so much for all of your thoughts and prayers! They are working!! Please keep them coming... we still have a long road ahead of us! Hopefully he will continue to do well and the Temodar will keep up the good work!! :)
I'm off to play with Mikey-Mike and to get ready to have a celebration dinner with the fam... Love to you all!!
Posted by Chrissie at 2:51 PM
Friday, March 6, 2009
~~~~Just a warning... I am hyperlink happy in this post! :) The title of this blog is a link to Mike's tem page and anytime St. Baldrick's or Mikey's Miracles is written just click on either and you will be taken to the Irish Circle event or Mikey's team page! :)
When I was approached about this a couple of months ago by a girl that I used to babysit (yes everyone, that made me feel quite old!) I had no idea what it was all about. St. Baldrick's? I had never heard of it. Then I researched it. What an amazing charity!! People all over shave their heads in honor of kids suffering from cancer. All of the money raised goes to pediatric cancer research. I LOVED it immediately! I was so touched when K asked if her team could do the event in honor of Michael. I didn't hesitate to say absolutely! So, K got in touch with the event organizer and they made Mikey the honored child for the St. Baldrick's event in Rockaway. K also made a team, Mikey's Miracles!! Matt, K and family friends are coming out to shave their heads on Mikey's Miracles team! I put his story up and people that we never met are now making Mike the child that they are shaving in honor of! It's amazing how many people shave their heads and show such amazing support for the kids and their families.
I know this is a hard financial time for everyone so if you can't shave your head or donate I fully understand. If you live close enough and want to come join us for a wonderful day please do so! I would love to see you there!! :)
Here's the info
St. Baldrick's Foundation Kutting For A Kause event in Honor of Mikey-Mike
Mikey's Miracles Team
Saturday May 30, 2009
3PM at the Irish Circle in Rockaway Beach, NY
If you have any ??s please feel free to send me an e-mail at email@example.com.
Thank you so much for all of your support!! Please keep those prayers coming!!
Love to you all,
Posted by Chrissie at 9:55 AM
Thursday, March 5, 2009
I am sorry it's been so long! Things here have been nutty! Matt got the job transfer and is now working in Manhattan, I was feeling a little under the weather and the kids have been keeping me hopping!
Katie has been doing great. She's marching in our neighborhood's St. Patrick's Day Parade with the cheerleaders this Saturday. She's loving school and doing so well! She does still ask about Florida and if we are going back and tells me that she misses her friends. Even though I know she misses Florida she has made quite a few friends here and really has carved out quite a little place for herself. I am so lucky that she is such a happy and adaptable kid.
Matt is ok with working in Manhattan. I know he really liked living in Florida and that he is not a fan of living back in NYC but he knows how important it is for him to be as involved as possible in all of this and I think that he really wants to be as involved as he can be. The kids have been thrilled to see him so much more. Last week we saw him for 3 days and he just left from being here at my mom's for the past 2 nights. It was good because he was able to come to MSKCC with us yesterday for Mike's PT & OT sessions.
I have to admit, as good as it is for Matt to be there for Mike, I wanted him to be there for selfish reasons. It's hard bringing Mike there. Mike is a smart kid, he knows when we go to a certain elevator bank that we aren't going to 'number 9' as Mike calls the Pediatric Day Hospital but to the first floor and the PT/OT offices. It's odd to think that he is ok with going to the PDH but really, despite the accessing and check-ups, he likes it up there. He likes the play room, he likes the activity, they have video games and computers and the poking and checking is only a couple of minutes long. And I am there with him every step of the way. I don't leave him anywhere up there unless he is in the playroom by my dad or whoever came to MSKCC with us that day. For all of the good things that he likes about the PDH, there are so many things he doesn't like about PT & OT. PT and OT are hard on him. They work him for 45 minutes each session, he is uncomfortable and he is afraid. And I am not there in the room. I sit outside while he builds himself back up in there. I can't be there because he relies on me for too much and he won't do as much if I am in there with him. So, I hand him over to the therapists while he screams and cries and I sit there, listen to him scream and cry in the room and wait for them to bring him out. I needed Matt to see that, I needed him to hear it, I needed him to know that sitting there waiting for Mike to come out of PT and OT is as heart wrenching as any other appointment when they are poking him. And still, while it is exhausting and heart breaking to sit there, he comes out and immediately is ok when I take him from the therapists. He laughs and says good bye and asks for his Buzz Lightyear jacket and SpongeBob hat. I can really learn so much from this little boy. He amazes me at every appointment.
So far, the therapists have not come out with a bad report. Aside from the screaming and crying, he does it all for them! He throws the balls, he rolls over, he builds with the blocks, holds the crayons and, get this... he will stand with their help! his knees will buckle but he will get up as long as they are holding him. That has been great but on Wednesday he shocked me. It was the best surprise! The teacher from the Board of Ed, S., was here working with him. She was on one side of the coffee table in the living room and Mike was sitting on a stool on the other side. He wanted something that was on the floor. All he kept doing was pointing and saying 'that one', 'that one'. She didn't know what it was that he wanted and there were a bunch of things on the floor so he finally got mad enough, reached out to the table and STOOD UP BY HIMSELF holding onto the table!! I was soooo excited! He hadn't initiated standing by himself since Christmas Day so this was HUGE! The therapists were thrilled today when I told them that he did that.
Anyway, on top of how well that he has been doing with PT & OT, his counts have been staying strong too. His numbers are all in the normal range and he's been acting great. I think his favorite activities are playing with Katie and singing at the dinner table! He is such an amazing kid!
Now, even though I am being cautiously optimistic about things I am losing my mind about Monday. I am a mess about Monday. If you don't know already, Monday is d-day, the MRI. I am hoping and praying with every part of me that we get good news. Please, please, please keep us in your prayers that the MRI shows something good!!
I hope you all have a wonderful weekend! I will be sure to post pictures of the kiddies in the parade! :)
Love to you all,
Posted by Chrissie at 1:57 PM
Wednesday, February 18, 2009
Hi Everyone!! :)
Well, Mike had his first full on conversation with the oncologist, Dr. D today!! It was hysterical... Mike was telling him all about his DVD player and the guys on Sesame Street. It was so nice that he was talking to him and not screaming at him but at the same time I felt that pang of, my son is actually comfortable talking to an oncologist and being at a cancer hospital. When did all of this become routine?
Anyhow, onto the good part of the day! I need a happy post!! LOL Since Katie is off from school this week she came with us to MSKCC today. She loves coming in with us, it makes her feel like she is as big a part of this as she can be. It is great for her to come and see the kids playing and to be involved as much as possible. Not to mention that having her there makes Mike all that much happier! She really is his best medicine!! :) So, we got there early today to get all of the bloodwork done. It only took about an hour for all of the tests to come back. His liver function tests were great and his counts were phenomenal!! His WBC was 10.5, Platelets were 253, HGB was 12.9 and his ANCs were 6.4. WHOOHOO!! :) He was weighed and was the same weight as last week which I am thrilled about and he grew 1/2 an inch as well!! :) I raised my concerns to the Dr about how he is feeling so great could this stuff really be working and he said that they have seen great results with the Temodar so that my cautious optimism is definitely a good thing.
From that Neuro-Onc appointment we went to PT and OT. My dad made Katie & me leave the waiting room because while we all know he will do better if I am not there, we all also know that I HATE listening to him cry, especially knowing he's hurting, and that I would want to go into him and help him. So, Katie & I went to the cafeteria for a little while ( I think I could only bring myself to stay for about 20 minutes) and then we went back to the PT/OT room. I went in to talk to the therapists after the PT appt and they gave me some more exercises to do with Mike. They all feel that his lower back is as much of an issue as his legs might be so I have a lot of work to do with him at home. :( OT went well!! He really seems to like OT. It's a lot of playing and doing things that he likes to do but he is so tired and sore from PT that he isn't as good for it as he could be. So, we have all agreed that once the schedule opens up for the next round of appts I am going to make the OT appt for the time slot before PT so that he is better for OT.
Then, we had to pick up the chemo. Now, all those of you who know me know that I HATE waiting! LOL I am just not an overly patient person but this has made me try harder to take things as they come. Today though, I got aggravated. The neuro-onc team was supposed to call the pharmacy (it's a kids pharmacy that they send all of their peds patients to all the time and they will compound the chemo drugs, unlike most pharmacies out there!) on Monday to have them make sure they had the Temodar that Mike needed in stock for today. I don't know whether they forgot to call or that the pharmacy didn't order it if they did call but either way, they didn't have the chemo meds there to compound today. AARRGGHH!! I hadn't known this so when I got out of the hospital with Mike at 12:30 my dad was able to pull up across the street (I know, we must play the lotto, a legal spot in the middle of Manhattan just waiting for us when we needed it!! LOL) and I ran in to pick up the meds. Now, if someone had called me about this or if someone had called MSKCC and let me know I would have been more ok with this but the fact that noone called anyone I was annoyed. They weren't sure what time their delivery was coming in and I wasn't about to keep Mike and Katie waiting in the car for an unknown amount of time. I was fully prepared to drive back into Manhattan tonight (and God bless Dad, because he was prepared to do it too so I didn't have to!) but then we remembered that my sis, E, works in the city!! LOL So, E to the rescue for her favorite nephew!! :) LOL E is going to pick up the chemo and bring it to Grandma's so we can start tonight!
So, everyone, keep those prayers coming!! Pray that the chemo is killing the tumors, pray that Mike continues to tolerate the chemo so well, pray that I have the strength (emotional/mental not physical) to do the exercises with him that he needs to do even when he is upset and crying, pray for our family that we continue to do what we need to do and make the right decisions for Mike and then again, because we can't get enough prayers for this, please pray that the chemo is working!!
Love to you all,
Posted by Chrissie at 2:05 PM
Monday, February 16, 2009
I hope that you all had a wonderful weekend. I had told myself that since both kids are home today I was going to not get on the blog and write anything. Nothing that I might have wanted to write couldn't wait until Wednesday after Mike's plethora of appointments. But it's 9 AM and I have already cooked 4 eggs, changed 6 DVDs, drawn 10 Sesame Street and Blues Clues characters on a dry erase board, refereed at least 3 fights and taken 2 Advil so here I am! LOL
I have to tell you, I have been thinking a lot about signs. About how there are little things to show you that everything is going to be ok. That there are things to let you know that the people you have loved and that are no longer with us are watching over us and taking care of us all the time. I believe there have been signs sent to me to let me know that all of my family members up in heaven are watching over Mike, helping me to make the right decisions for him and are guiding the Doctors to the right medications to get rid of these tumors. Like I said in another post, I am very cautiously optimistic about things. I have a fear that things aren't going the way I want them to and I am petrified about the MRI on March 9 showing us what we don't want to see but deep down I believe, and am hoping beyond hope, that everything is going to be ok.
Mike is doing ok. I wish I could say he is great but he is ok. And right now, that's good. He is cranky and irritable all too often. He gets frustrated entirely too quickly and he is still not eating as well as I would like him to. He is still not walking and is really not sleeping well at night at all. BUT, he still likes to play, he is still loving his DVDs and has a very active imagination. He loves to play on the computer and is talking up a storm. He sings songs, says the alphabet and counts to 20. He lights up every time Katie comes in the room and wants to be involved in everything that we do.
So, like I said before, today was shaping up to be one of those days. Right before I sat down here I was about to lose it... and it's only 9AM! I was aggravated at the way the morning was going. I was frustrated that I got very little sleep last night AGAIN. I was worried again about Mike's behavior, is there something really hurting him causing him to be so cranky? Is the tumor changing in a way that is unacceptable to me(notice the wording... I can't even bring myself to type it out in plain English) and causing him to be so irritable? So, I sat down here and signed into my G-mail account. I then signed into Blogger and saw that I had a comment to moderate.
I truly believe that comment was another sign. Not from an old friend or a family member or from someone I know in real life but from someone I have never met. I have never met her but I have been so touched by this person and her family. A sign in the form of a comment. It's right there, on my last post, go read it for yourself if you want. It's a comment from Jessica Kate, Tuesday's mom. She was responding to a comment I left on her blog and when she was leaving hers she noticed her verification word (you know, that word you have to type when you try to leave a comment) to leave a comment on my blog. Jessica Kate's verification word for that comment she left me was CURE. If that's not a sign from a very special little girl up in heaven, I don't know what is.
So, for all of you, please keep praying for Miss Tuesday and her family and for all of the children that have been taken away from us by this monster we call cancer and their families. Please keep praying for the rest of our family that we are making the right decisions and doing all that we can do to make sure Mikey-Mike lives a long, happy and healthy life!! And, of course, please keep praying and keep believing that Mikey-Mike is going to be ok.
Thank you all so much! I hope you all have a wonderful day... and that mine just gets better from here! LOL
Posted by Chrissie at 9:01 AM
Thursday, February 12, 2009
I have to tell you, I am finding out that more and more people are reading my blog and can't believe that there are over 300 people that have joined Mikey's Facebook group! I am so touched by the tremendous amount of support that we have received from everyone. Thank you all so much and for those that haven't joined yet, please go to the group and send a request to join! Once you are on there you will be able to get the 'Reader's Digest version' of everything that has happened up until now and where you can keep updated on what is coming up for Mike in the future. One of the things you will find is that on February 18th we are having a Virtual Prayer Day For Mikey-Mike!! Wednesday, Feb. 18th is the first day of Mike's 2nd round of chemo. We are praying that this chemo kills the tumor cells that are all over his spine and brain and that he continues to tolerate it as well as he has been tolerating it! Pray from your office, home or wherever you are, pray in your PJs, in your worksuits or in your workout gear!! Just please, join us in praying for Mike's full recovery and that this drug does it's job!
Now, onto Mikey-Mike! On Thursday morning I took Mike into MSKCC for his PT and an OT appointmenta. I am now fully aware that we need to schedule his OT appointment BEFORE his PT appointment. The poor little man was in so much pain from PT and was so wiped out that it broke my heart. All he wanted to do during the OT appointment was hang onto me and be held. I do have to say though, the therapists were phenomenal with him and were so patient and supportive!! That was a big help in all of that. The PT said that the VinCristine caused the foot drop that he has and that foot drop caused his ankles to be stiff which caused the pain when he was walking which caused him not to want to walk which caused the muscles to stiffen so much which causes the pain when anyone tries to get him to stand. So, all in all, I think it's going to be a long and painful journey for my little man to get walking again. He really liked bouncing on the exercise ball until M (the therapist) tilted the ball to move him to a standing position. I now have to go online to find an exercise ball so I can work with him at home too. I just feel horrible because he was in so much pain. I know it needs to be done because he needs to walk but I can't stand when he cries out the way he does it. I have exercises to do with him at home too. My mom had wanted me to show her how to do the leg moves but I don't want anyone else to have to do it because they hurt and it would be horrible if he associated anyone else with the pain. :(
So, we go back to MSKCC on Wed, 2/18. Mike has an appointment with the oncologists to have an exam and to get the Temodar (chemo) that we have to start at home that night. Then he has PT and OT again. On 2/24 we go back AGAIN to get blood work done, have a surgery follow-up, PT, OT AND Mike has to see the Ophthalmologist. That's going to be one very long day. 2/26 is just PT and OT. Looks like we are back to being at MSKCC 2 or 3 times a week! And, PLEASE don't forget to say some big time prayers on 2/18 that the chemo we are starting round 2 of is doing its job and on 3/9 for Mike's MRI!
I hope you and your families are all doing well! We continue to pray for all of you that visit us here to check in on Mike and our family. Please keep Mike in your prayers!!
Posted by Chrissie at 8:02 PM
Wednesday, February 11, 2009
I signed on today and saw that I had many comments to moderate! Thank you to all of you new readers! One of the comments was from Ron. (Thanks to Jennifer I learned how to hyperlink so just click on his name to go to his blog!! :)) Ron is very talented and sketched a picture of Mike that I wanted to share!! :) I absolutely love it!! :) Thank you so much Ron!! :)
We go into MSKCC tomorrow for Mike's first Occupational Therapy and Physical Therapy appointments since the surgery on 1/30. I know it is going to be a long road but hopefully he will be up and running again really soon!!
Oh, and Matt got a job with his company in Manhattan so he will be coming up to NYC! Katie is so thrilled that she will get to see Daddy more. He will be staying at his mom's upstate. It would be so crowded here and he will be working so much on the days that he is working that the kids wouldn't get to see him enough anyway. It will all work out for the best this way. He will be here on his days off and will be able to help on nights that I need him to be here too.
Thank you again for all the good thoughts and prayers! Please, please, please keep them coming!!
Posted by Chrissie at 3:14 PM
Monday, February 9, 2009
Yep, Mike had a good day at Sloan today! :)
His counts came back great! WBC: 7.2, HGB: 12.8, Platelets: 330 and ANC: 3.0!! Yep... that's all but the HGB in the normal range and the HGB level only misses the normal range by 0.2!! YAY!! He has been feeling good and has been acting good for the most part too so it makes me feel better to see him doing better. Don't get me wrong, he has his tough moments and he is still sleeping horribly overnight but for the most part, during the day, he's been pretty good.
And guess what?? He gained weight!! It's only 3 ounces but it's a gain! Hooray!! Looks like the eggs and ketchup, waffles, pancakes, cheerios diet is working!! LOL
They scheduled the next MRI too... March 9, 2009. So, mark your calendars everyone, March 9. March 9 is the day to send every good thought, feeling and prayer you have in you out there for Mikey-Mike!! :) I have to be honest, and please know I am being cautiously optimistic but I feel like this one's going to be good.
Well, after such a great morning he is one pooped little guy. I am going to put him in for a nap and get some stuff done around the house before I have to get Katie.
Oh, did I tell you about Katie? She is reading in Church for the Catholic School's week mass on Wednesday! She is so nervous. It's a long prayer of the faithful and it has big words like administrator and empower in it but she's doing it! I am so proud of her! I know she is going to do great!
Well, I am off to grab some lunch! I hope you are all doing well!! Please keep sending those prayers, we are still needing them!!
Posted by Chrissie at 12:35 PM
Sunday, February 8, 2009
So as I posted the other day, Saturday was a celebration of Tuesday's life. I took the kids for a walk this weekend and I thought of Tuesday and how happy she must be up in heaven looking down on all the kids. I can't imagine Jessica and the Whitt family's grief. There have been so many people touched by Tuesday's story and life that people all over the country were taking 'waggie' rides this weekend to celebrate an amazing little girl.
Now, those of you that have been following Mike's story know that he can't walk. He can hardly sit up on his own so I put Mike in the carriage and Katie rode her bike. Here are some pictures that I took of the kids on our 'waggie' walk for Tuesday.
Sending all our love and prayers to the Whitt family!
Posted by Chrissie at 12:37 PM
Thursday, February 5, 2009
**update: Thanks to Jennifer, I am going to try to hyperlink Mike's Facebook page!! :) Mike's Facebook Group
There's a Facebook group for everything... why not one for Mikey-Mike??!! :)
Here is the link... (I have no idea how to hide a link and make it an underlined word or phrase so please, if anyone here in Blogger-land knows, send me a comment on how I can do that!! LOL)
Join us there!! Show your support for a strong little man and his family! See some pictures, send a prayer, show some love.
Just a note... I realized that the group was open to the public and everyone and anyone could see everything! Since there are pictures of my kiddies on there I made it so that if you are not a member yet you must be approved to join. Don't let that stop you... join and show some love for the strongest 3 year old I know!!
Posted by Chrissie at 8:13 AM
I got this from Debi, a friend of Jessica's. She was so sweet in contacting me after reading my blog and I wanted you all to know that this is happening. I know I asked you to hug your kiddies a little tighter but now I'm going to ask you to do something else... Tuesday Whitt loved wagon rides. She called them "waggie rides". Saturday Feb. 7th Tuesday's family is having a celebration of her life. Since I don't live in Colorado but wanted to honor Tuesday, Jessica and their family I was so happy to see that we could have a virtual 'waggie ride'. So, on Saturday, if you are out and about in Rockaway, look for Katie, Mike and me taking a walk in honor of Tuesday! If you want to join us, call me... we would love to take a walk with friends!!
Here is the blog story from Debi (http://eminpursuit.blogspot.com/2009/02/tt-power-of-many-pulling-as-one.html)
On Saturday, February 7th at 11:00 a.m., the Whitt Family is holding a celebration in Parker, Colorado. They're having a wagon and bike parade to honor Tuesday with one of her favorite things to do - "wagie rides."
We all can't be there physically, but we can be there in spirit.
And on Saturday, have a little wagon ride yourself. No wagon - go for a bike ride. Too much rain - jump in a puddle. Too much snow - pull a sled. Heck, throw the pooches in the back of a pickup and take a slow drive.
Whatever you do - as one person, as a couple, as a family, as a group of friends - take a picture and post it. Then come back here or to Lee on Monday, February 9th, and add your link to Mr. Linky.
The goal is to create a virtual parade for Tuesday, to show her family and friends how her brief life touched so many. To offer support in their time of need. And to maybe bring a smile.
We hope we did not over step our bounds in this effort. It is heartfelt, and it is pure. We both felt the need to do something, anything to help these hurting hearts.
We hope this does in one small way.
Now grab that button and spread the word!
Posted by Chrissie at 8:05 AM
Wednesday, February 4, 2009
Ok, well we all know that chemo makes the hair fall out. I hadn't known exactly why it does this until Mike started chemo and Katie asked why it happens. I don't know why I didn't know or why I never asked, but it was just one of those things that is there. It just happens. So, when Katie asked, I got her the answer. It turns out that the chemotherapy drugs' main job is to kill fast growing cells. Some of the fastest growing cells in the body are the hair cells. So, it kills them.
I have posted pictures of Mike in many places, on my MySpace and Facebook pages and on here. I have shared albums of pictures online with family and friends. It is apparent to everyone that the chemo is killing Mike's hair cells. Sure, it has taken longer than we thought and I am grateful for that because it is gradually falling out and allowing me to take my time dealing with it.
Now, two of the things that bother me when people say them are, and please don't feel bad if you have said this to me before because you would have no idea that they bother me. I know that you were trying to make me feel ok about his hair and that you were trying to help and you said them out of love for me and Mike. And to be honest, I have said and thought them myself before. I had no idea that they would bother me so much hearing because they are logical. They make sense, they really do. But they bother me all the same. They are, 'He's a boy. It's ok, it would be worse if he was a girl' and 'Don't worry, it'll grow back'.
Ok, yes, he's a boy. But that doesn't make it ok. How could it? What makes a little boy's hair loss any less traumatic than a little girl's to their mom that is caring for them through cancer and chemo? It isn't ok that he is a boy and has only gotten one haircut in 3 years. It isn't ok that his amazingly long eyelashes are falling out or that when I kiss his head I kiss more of his scalp than hair. It isn't ok that when he touches his head and then puts his thumb in his mouth he has to fish hair out of his mouth off of his tongue and cries, 'Hair! All done hair!' while he is doing it. None of this is ok. And yes, God willing, it will grow back. But I will get back to that one in a minute.
I want you to know that if I could save every hair that has fallen and will fall out of his head I would. If I could turn back time and he still had to have these tumors I would have found them earlier. If I could take away his pain and sickness I would. But I can't do any of these. His hair falling out is a constant reminder to me that he is sick. Even when he is smiling and laughing and acting great, the hair loss is always there staring me in the face.
Ok, you are all right, it will grow back. God willing, he will have a full head of hair and he will be getting hair cuts constantly. Now, I would like this to be sooner rather than later but I'll take it whenever it comes. I pray more than once a day, more than 5 times a day actually, that the chemo is doing it's job and that one day he will be tumor free and off chemo. Because that, and only that, will mean that his hair will grow back. So when you say, it will grow back, please know that while I know in my heart of hearts that it will, today it is falling out. Today it is falling out because his tumors are still there and he is still on chemo. When I say, yes I know it will grow back, I say it as more of a prayer and a hope and a plea to God that he will be tumor free and growing back into that happy all the time little boy because I truly believe that we will fight this and beat it.
So, please pray for Mike and our family that his hair will grow back... that he will be tumor free and off of chemo and grow up to be a healthy man living a long happy life. Please pray for all of the kids who are losing their hair to chemo and their families that are caring for them that they all have the strength to get through their chemo and that they win their fight with cancer just like I know and pray that Mike will.
Posted by Chrissie at 7:17 AM
Tuesday, February 3, 2009
So there's this blog I follow. Well, there are a lot of blogs I follow but this one I really follow. See, when you are a cancer mom you have things in common with people that you wouldn't even think about if your child didn't have cancer. You rejoice when the scale stays the same and doesn't drop at each doctor visit. You are relieved when you can go a day without giving your child a stool softener. You get a thrill knowing that your little one is not nauseous for a day and hope you are so lucky tomorrow. You don't care what it is that your child eats as long as they get the calories they need to sustain them through chemo. You realize that today is the most important day of the week, no matter what day it is and what happens. You feel like you are going to cry over the slightest thing one day soon because you have held it in when all the big things happened that week. You have these unspoken fears and thoughts that you know noone but another cancer mom could understand you having.
So, like I said before, I found this blog. I don't even remember what blog I found it through but once I read it, I immediately started following it. (since I don't know how to add a link to my blog, here's the web address for it... http://half12.blogspot.com/)It is a mom blogging about her little girl named Tuesday who has neuroblastoma. Tuesday is a twin and she and her sister turned 2 in October. She is just the cutest little thing. Every picture I saw of her she was smiling in, no matter what was going on there was a smile. And once I found the blog I went back and read the whole thing... of course there was a box of tissues right next to the computer. I read it all, the ins and outs of the hospital, the scans, the chemo, the PICU stays... I would comment on their blog and Jessica (Tuesday's mom) sent me her phone number to talk to her about the Temodar that Mike is currently on. I hadn't been able to call her b/c of all the craziness with the hernia surgery but was hoping to do that this week. My heart broke into a hundred pieces when I sat down to update you all on Mike and I opened my blogging dashboard. I went right to Tuesday's blog and saw this...Any mom's worst nightmare. A cancer mom's worst fear. And there it was, staring me right in the face.
Tuesday Fiona Whitt
October 11, 2006 - January 30, 2009
It is amazing how one story from one family can touch you so much. I have been crying since I posted about Mike and read about Tuesday today. It is heart wrenching to know that there are so many other families that have pediatric cancer out there that worry like I do so often and so much. It is exhausting to think about the number of children that are diagnosed each day and the number of families that are living with and fighting pediatric cancers.
To Little Tuesday, May you rest in peace and be in no more pain. May you wear that beautiful smile every day and watch over your family and give them the strength that they need. To Jessica and all of Tuesday's family, my heart breaks for you and my prayers are with you.
Hug those kiddies of yours even tighter tonight. And please, when you pray for Mike, include Tuesday and her family in your prayers.
Posted by Chrissie at 8:59 PM
I am sorry it's been so long since I posted. Last week was full of Dr visits and craziness.
First, Katie and I had an AMAZING time on Tuesday night at The Little Mermaid on Broadway! It was an awesome show and she and I both loved it! The 2 1/2 hours flew by and I would see it over and over and over again! I was so thrilled that her first Broadway experience was so great. She was so funny... sat up in her chair, leaned forward and was all smiles all night! It was so great to get time out just her and I. We definitely don't get enough Mommy & Katie time so that is something I need to really make sure happens more often.
Next, onto Mike! Well, as you all know, we went in on Monday and they said that surgery was needed to relieve the hernias and hydroceles in his scrotum. (I am sure that as Mike gets older and looks back on this blog he is going to be soooo mad at me that I am talking about this!! LOL) So, I waited for the call... and waited... and waited... finally on Wed evening I didn't want to wait anymore so I called the surgery office. They were having a problem getting Mike added to the OR schedule so they told me to come in on Thursday and have Dr. K look at him again to reevaluate and see if there was extra urgency. You know, extra urgency, on top of the fact that there were hernias and that the chemo might possibly affect his blood counts sooner rather than later... I don't know how much more urgent you could get but what do I know, right? So, anyway, we went in on Thursday morning and waited 2 hours to be seen. That morning they had seen a patient that was on the schedule for Friday but was sick so they had to cancel her surgery and we were able to slide into her spot. So, the check turned into a pre-op appt. We got there at 6:45 on Friday morning. After waiting in the PDH for a while we were taken to the OR holding rooms and he was taken in to the OR around 9:45. I hate that walk to the OR with him. That whole handing him over to Drs that I know in my head will take good care of him but my heart just breaks every time I have to hand him over. This was surgery number 5 since September and it doesn't get any easier.
Anyway, after 2 hours (yes, it took an hour in each side) Mike got through surgery beautifully on Friday. Dr. K came in to speak to me and my Dad and said that there most certainly were hernias and hydroceles in both sides of the scrotum. My dad and I went into the recovery room and waited for Mike to wake up. His stats were great and I was glad I went in because I just wanted him to sleep it off himself. The thing I have learned is that he reacts to anesthesia so much better when you let him wake up on his own! So, we let him sleep... and sleep... and sleep!! He slept for at least an hour and 45 minutes after he was brought to the recovery room. Once he woke up he was wheeled into the PDH in the hospital bed... DVD player running right next to him of course! LOL He really did so well after this surgery. He took his pain meds like a champ that night and on Saturday and all looked well.
Until Sunday morning... When Mike woke up and I changed his diaper he was swollen... and I mean swollen. I was so nervous. Dr. K told me to look for redness and swelling as signs of a problem and here I was looking at swelling. At first I thought it was just me so I called my Mom to come down and make sure I wasn't seeing things. I wasn't... so I picked up the phone and called the surgery fellow who told me to come in. Off we went to Mike's first Urgent Care visit. We weren't there too long... only about 4 hours and we were sent home with instructions to call on Monday. So, I did... and then back we went to Sloan on Monday! Thankfully the consensus is that all is ok and it looks like it's just post-op fluid retention.
They ran his blood counts yesterday too. They came back good. This week is the week that we have to start watching them b/c of the new chemo. If he acts more lethargic or more irritable then I have to bring him back later this week, otherwise I can bring him in on Monday. I am praying and keeping my fingers crossed for a good week and just the one trip in... we have been in there at least 2 or 3 times a week since the beginning of December.
Anyway, this was yet another long one! I'm sorry for that... I'll try to update more often so that the posts aren't as long!
Thank you for the continued prayers and good wishes! Please keep them coming!!
Posted by Chrissie at 11:40 AM
Monday, January 26, 2009
Yes, the saga continues and nope, there is never a dull moment.
On the plus side, Mike took all 5 nights of chemo like a champ! I was so thrilled!
On the down side...On Saturday when I got home from Katie's birthday party I woke Mike up from his nap to get him ready to go up to my in-law's house. When I went to change his diaper I noticed that his left testicle was big again. I immediately called MSKCC to talk to the fellow but wasn't beside myself worried about it. I figured it was the fluid from the VP shunt draining again and since he isn't walking and getting around as much it was pooling in his scrotum again. The pediatric fellow said that as long as it wasn't red, hot to the touch and he wasn't running a fever and he wasn't vomiting it was ok to not come in to the urgent care that afternoon but that I should bring him in on Monday morning at 8:30AM. So, Matt & I drove upstate for the night.
By the time I put him to bed Sat night everything looked good. It looked like it was back to normal. Sunday morning around 10 it looked like things were puffing up again and then that afternoon it was ok again. So, off to MSKCC we went this morning! Thankfully, my BFF, J, was able to come in with Mike & me. It always helps to have another set of ears! The surgeon took one look and feel and said that he felt the hernias in both sides of Mike's scrotal sac. So, as of right now, surgery is being scheduled for Friday and if that is the case then we will have to go in on Wed for pre-op. :( We had to cancel the PT appointments that we had set up for this week so that we didn't aggravate the hernias any more.
Please keep Mike in your prayers. I hope you are all doing well!!
Love and hugs to you all!!
Posted by Chrissie at 2:01 PM
Saturday, January 24, 2009
I know, our appt was Wednesday and it's Saturday. That's 3 days and I haven't updated. You need to understand something though... Katie's birthday was on Wednesday. She turned 7. She has been talking about turning 7 since the day after she turned 6! On New Year's Day she woke up yelling, 'It's January! Finally! It's my birthday month!' So, while Wed was an important day for Mike, it was an important day for Katie too. And so was Thursday and Friday and today. I swear, there isn't a year that goes by that Katie doesn't have at least 3 birthday cakes and a week long celebration! This kid LOVES her birthday! LOL
So, now that you know why I have been MIA now I will fill you in on what happened on Wed. We saw Dr. L. He is very nice and very informative. I was thrilled when he said that they were ok with me trying to administer the chemo orally for the 2 rounds and then re-visiting the g-tube discussion after the scans come back and show that this Temozolomide (Temodar) is doing what it needs to do. Then he dropped the bomb... we were starting that night. They called in the prescription for the chemo and an hour later we were heading home with a compounded liquid chemo for me to give to Mike. We got it at Cherry's Pharmacy in Manhattan, right up the block from MSKCC. What a great pharmacy, by the way! They are mainly a kids' pharmacy... flavor EVERYTHING, they compound pills into liquid or other forms for the kids that can't take pills, they sell all sorts of kid OTC meds, they have a train on the ceiling and a train table on the floor. And, they are great and the Drs at MSKCC trust them to give me the right chemo... so I guess that means I have to trust them too, right?
Anywho... we got home and I dreaded the chemo time all day. They told me that my best bet is to give it to Mike at night so he can sleep through the worst of the nausea. The catch is, that he has to take it on an empty stomach. For Mike the grazer that was going to be hard b/c you very rarely find him without cheerios or waffles or pretzel sticks in front of him! Not to mention that there went my idea of hiding it in ketchup and eggs, or bribing him with cookies or waffles... I just had to give him the meds. I had to give him Zofran (anti-nausea) and then give him the chemo 1/2 hour after that. The first night went AMAZING! Don't get me wrong, the idea of drawing up chemo to give to my 3 year old son was horrible. My hands were shaking and I just kept telling myself that this one is going to work, this is going to be it. I mean, there was some level of semi-denial about what you were giving him when the nurses were administering it. You could blame them when he was sick, you could say that they were trained and they know what they are doing when they give him this medicine. I worked on Wall Street, I did privacy compliance work and I'm his mom, am I really going to be able to do this? Well, I did it. I wish I could say that I didn't surprise myself, but I did. It's amazing how you really do just do what you have to when you need to.
My mom held him in a cradling position and he took both the Zofran and Temodar like a champ. Don't get me wrong, he cried and he fussed but once I got the syringe in his mouth and squirted the meds in he took them!
Last night, Friday, was night 3 of 5. He has been great taking it all 3 nights. Just 2 more to go! Wish us luck that the next 2 go as well as the first 3!
I am off to Katie's birthday party with her friends for birthday cake and celebration number 3 and then we are heading up to my in-laws for cake and celebration number 4! Chemo will be at my in-laws tonight... I hope we do as well up there as we are doing down here!
Please keep those prayers coming! I hope all is well with all of you and your families!
Love & Hugs,
Posted by Chrissie at 9:18 AM
Friday, January 16, 2009
On Thursday, shortly after I wrote about Tuesday, I got a call from the Drs at MSKCC. The Dr that called me was Dr. B. He was the Dr. that we saw on Tuesday afternoon when we got the MRI results. Anyway, Dr. B said that he spoke to Dr. G and Dr. D and they came up with a new treatment plan. They feel that the best chemo drug to try now is Temozolomide. It would be given once a day for 5 days and then he would have 23 days off of the meds. Then start the once a day for 5 days and 23 days off again. After the 2nd round we would go in for another scan to see if this treatment is working. If it is this treatment could go on for at least a year. Temozolomide (or Temodar) is an oral chemo drug that interferes with the DNA reproduction of the tumor cells. The side effects are as concerning as the last protocol, like they are with every chemo drug. The major ones seem to be nausea/vomiting/diarrhea and myelosuppression & the dropping of blood counts, so it looks like there will be many more transfusions in our future. (So PLEASE donate in Mike's name!! Unfortunately you can only donate for him AT MSKCC because they don't accept blood from anywhere else. I will send you the info if you need it!). Thankfully the peripheral neuropathy issues aren't listed as a major side effect so I am hoping that between the new chemo and the physical therapy he will get back on his feet soon!!
One of the problems with deciding to go with this treatment is that it is an oral chemo. And not just any oral chemo, it's a pill. Now, anyone who knows Mike should know that his diet consists of Cheerios, pretzel sticks, Belgian waffles, pancakes, french fries and eggs with ketchup. He has always had a horrible diet and it has only gotten worse on chemo. So, since sticking myself with hot pokers once a day would be easier than getting him to take a pill that is going to make him feel sick they want to talk about putting in a G-tube. A G-tube is a temporary (but long term... can last for 6 months before needing to be changed) feeding tube placed in Mike's abdomen. I will have to administer the chemo at home through this G-tube. I am a mess about possibly having to have this done. I guess a plus to this g-tube is that I will be able to give Mike nutritional supplements through it as well to ensure that he is getting the calories, vitamins and minerals that he needs to get through this chemo like the champ he is.
Now, onto my issues... I am losing my mind thinking about doing all of the G-tube stuff at home so I am calling all nurses and medical professionals to help teach me and watch me until I am comfortable doing it on my own!! Any advice pre-G tube you can give, any post-G tube teaching and tips you can give are GREATLY appreciated! And if you can come over to check and help me as I am doing everything the first week or two I would LOVE that... send me an e-mail, a message on Facebook or call me and I would love any help and/or advice you could give me.
So, we go into MSKCC on Wednesday (which ALSO happens to be Katie's 7th birthday!! :) YAY!) to talk to the Neuro-Oncology team about the new chemo and the Surgery Team about the G-tube. I have a bunch of ??s to ask already and I am sure there are only more to come to me. My mom is coming with me so she can be another set of ears when I am talking to the Drs and my sister E is coming to entertain Mike so I can actually carry on a conversation with the Drs. I am hoping to get answers to all of my questions so that I can be comfortable with my decision.
Well, that's it for now... I will update after our appointments on Wednesday. Please keep those prayers coming! Sending love and hugs to you all!!
Posted by Chrissie at 12:41 PM