Broccoli 4 Breakfast

Gotta Get A Life Plan

2012-01-12T15:16:00.000-05:00

Boy oh boy have we been busy. Between the holidays and just keeping up with three growing boys I'm exhausted. I know now not to promise I will update this blog just like I know not to promise that I'm going to lose weight. It'll happen when it will happen! But, so much has been going on that I thought I would sit down and share.

First, Adam and Joshua have been losing teeth left and right. That is, left and right both top and bottom.

Noah is almost as tall as me which isn't hard but come on. The kid is only 8!

Jeff started with a new company back in December and although he's doing the same exact job at the same exact desk, the move provides better insurance and as you all know, that means a lot to our family. And, I've been trying to keep up with the gang and keep everyone in order. I'm still trying.

Anyway, I can't not write about a Czorapinski moment so here's on you may enjoy.

You know when I was a child I wanted to be an astronaut, a music teacher and a lawyer. I thought about getting married and what my kids would be like. Of course, they were all dreams and I never could have predicted how my life has turned out. Joshua on the other hand has a good grasp on life. He's got a "life plan."

The other night at dinner we were doing our usual how was your day conversation when Joshua tells us he has a life plan. I asked him about it and he went into great detail about taking his wife to the beach and getting down on one knee with a ring (thanks to the Smyth commercials he will have a better background for a proposal than his father did) and make googly eyes at her (that's what I tell the boys they have to do to girls they like). He told us he was going to have either "one, two, three or four kids, maybe five" and that he wanted to be a doctor that helps kids with cancer. He asked me if I thought it was a good life plan. I told him "no Joshua, I think it's a great one!" Thinking that the other two boys may want to tell me about what they want to do when they get older, I look at them and ask if they have a life plan. Noah says "I don't know." Adam on the other hand says, "I think I'll just camp!"

Guess we'll be working on some of those life plans!

It's All Fun and Games...

2011-08-16T21:21:00.000-04:00

until someone gets hit in the face with a golf club. And I bet you could never guess who that someone was. Yes, today was the boys first day of golf camp. They were super excited about going to a "real" golf course. When they got there, the instructor asked if anyone wanted to be together as they split up into two groups. Of course Adam and Joshua did their twin thing and with arms wrapped around each others waists, raised their hands. Noah was put into the same group. Anyway, I went off to do my thing for two hours. No, not shopping or relaxing (what's that?). I went back home to grab the dog and take her to the vet for her annual check up. As I returned to pick the boys up, I walk over to see Joshua sitting on a picnic table with a towel of ice to his face. He has blood down his shirt and a black knot on his forehead. Apparently, Adam took a nice swing and Joshua was right behind him. Boys. Especially the littlest one. As if I already didn't have enough gray hairs by the age of 33.

On a happier note, we're all set to leave for our week long Disney trip on Sunday. The boys still don't have a clue. Jeff and I have been throwing ideas on how and when to tell them around for weeks. We've thought of having Mickey Mouse call the house with a magical wake up or good night call. (Yes, there is a service that will do this.) We've thought of running into their rooms and just yelling "wake up, we're going to Disney World!" We have a lot of ideas but haven't narrowed it down to one yet. I plan to video the whole event and I will post it here when we get back so you can enjoy the surprise too.

Finally, it was exactly one year ago today that Joshua received his last dose of chemo. What a day to celebrate!

Honesty is not always the best policy

2011-08-03T12:08:00.000-04:00

So yesterday, the boys are watching shows on the Cartoon Network. I'm in the kitchen cleaning up from lunch when a commercial for the Shake Weight comes on. Now I will start by saying that my kids think they need EVERYTHING they see from the cupcake lollipop maker to the touch and brush. But they didn't think they needed the Shake Weight. No. They thought I did.

Adam: "Mommy, you should get that."
Me: "Oh I should, should I?"
Adam: "Yes."
Me: "Why do you think I should get that?"
Adam: "Well... Your arms are kinda big. I think your arms are big don't you?"
Me: "Thanks Adam."
Adam: "Well they are. They are like this big." (As he puts his hands together to make a circle.)

Oh you have to love the honesty in children. Right?

The Oriole's Newest Pitcher

2011-07-15T15:51:00.000-04:00

Here is a link to all of the pictures from last nights Orioles game. The very first image is the video of Joshua throwing out the first pitch. It's a little shaky as Jeff was very excited.

Enjoy!

https://picasaweb.google.com/jczorapinski/2011CaseyCaresTheOrioles?authkey=Gv1sRgCOWZrcni8bbwvAE#

Miss Us?

2011-07-13T13:10:00.001-04:00

I can't believe it's been almost a year since I've sat down and written a blog post. I had been thinking about writing again when in the past few weeks I've had a least 3 people tell me that they missed reading about us. Really? You need to read all about the Czorapinski circus? Well who am I to cut off your entertainment. So, we're back. The ups and downs of the Czorapinskis. Now, where to start?

I guess I should start with the whole reason I started this blog in the first place. Mr. Joshua is now a 6 year old who is about as healthy as any one child who could have gone through 4 and a half years of chemo, a bajillion surgeries, broken bones, and trazillion medications can be. He is rotten as ever and has a smile that can light up a room instantly. Of course, that smile now has one last tooth as he lost his first tooth about 3 weeks ago. He was so excited he couldn't stand it. He made sure to point out to Adam that he had lost one first. Adam though not to be out done, lost one about two weeks later. Joshua's favorite thing to do this summer is, in his words, "chillax." Don't ask me where he comes up with half the things he says. He loved every minute of being in kindergarten except when his teacher made him dance. That child held out the entire year without dancing during circle time. Talk about determination. I just told his teacher that some battles weren't worth it. So, the little man is doing well. We still go to Hopkins every month for blood checks and we just had his 11 month check up on Tuesday. Eleven months out of chemo. Wow!

Now, for Joshua's BIG news. Yesterday, I got a gall from the Casey Cares Foundation. Casey Cares has provided so many great opportunities for Joshua over the past few years. They have sent us to Disney on Ice and Monster Jam just to name a few. Well, the call yesterday was to offer our family a meeting with the Baltimore Orioles and then Joshua will go onto the field and throw the first pitch at tomorrow nights game. Talk about exciting. He even made Jeff go outside with him last night to practice. And who knows. The way the Orioles have been playing, they may just offer him a contract on the spot!

Joshua's other half, Adam, is growing like a weed. That child is a perfect combination of both Jeff and I. Watch out world. He inherited our OCD complexes and has an explanation for EVERYTHING! His baseball coach said that whenever the ball came near Adam he was sure that as soon as the play was over, Adam would describe in great detail, what he did, what he was trying to do, and why it happened. Adam is the most inquisitive child and he is reading at such an advanced level. As I mentioned, he has lost one tooth as well, the opposite bottom one than Joshua, and he could not wait for it to come out. Every day, he would ask me to "just give it a little yank." Of course, being the great parent that I am, I totally forgot to put the tooth fairy money under his pillow. He came into our room the next morning with tears in his eyes and his bottom lip pushed out. "She forgot" he told me. Oh crap. Mother of the year here. I ran into his room, stole some money out of his wallet and threw it down beside his bed. I then called him in and told him that he must have slid it out when he moved his pillow. Oh boy. Close one but it worked. And yes, I put replacement money back in his wallet. At least I think I did.

Now Noah, has changed so much in the past year. He is now almost 8 and no longer that little boy he once was. He's almost as tall as me (I know, not hard to do) and he loves to be with friends. He is still struggling in school but has made great strides with all the extra help he receives. He is attending extended school year this summer and actually likes it. We have weird kids. He taunted his brothers that he got to go to "summer school" and Joshua was completely upset that he didn't get to go. Anyway, Noah loved playing baseball this spring and is planning on playing again in the fall. He can't wait to start second grade and thoroughly enjoys bossing his brothers around. Of course, what are big brothers for.

And finally, Jeff and I are doing well. I went back to work for a few months this spring. I was teaching a pre-k and a nursery class where the boys went to preschool. I loved working with the kids again and enjoyed being back in a classroom, but my family comes first and both Jeff and I found out that I do a lot in this family and me working out of the house, was just not working for us at this time. So, I finished out the year and will go back to just being Mom. I plan to continue to substitute for the school this fall. They can't get rid of me that easily.

So that's us in a nut shell. We are loving summer and plan to make one or two more trips to the beach before it's over. We are once again celebrating Joshua's health by taking another trip to Disney World in August. This time, the boys have no idea we're going. We're planning on surprising them so shhhhhhh.

Finally, let me what you think. I love to know that I'm not just writing to myself here. Send me a message or comment here letting me know what you think or just to say hi. I'm not quite sure where this blog is going but since you asked for it, I'm going to give it to you! Oh, and plenty of pictures to come. Especially pictures of our little pitcher!

What will you celebrate?

2010-08-16T13:19:00.003-04:00

That's the Disney theme these days. When they asked me if we were celebrating as I was scheduling our Disney trip, I told them we were celebrating Joshua's end of chemo. But really that isn't the whole truth. The truth is, we're celebrating life. We're celebrating the fact that we've made it through this ordeal. We're celebrating the fact that every illness, dose of chemo, surgery, didn't turn into something worse. We're celebrating a little boy who at 5 years old, is just starting to find out that there are so many more simple pleasures in life. We're just celebrating.

So today, as Joshua receives his last dose of chemo, I want you to go out and celebrate. Even if you don't know us very well or if you haven't seen us in a while. I want you to celebrate with us. Go out to dinner, put on the radio and dance, run around with the kids outside, whatever it be, just celebrate the beautiful day that God has granted us.

I have to admit, I wanted to have a video ready for today. One that had Joshua's journey from 10 months old and diagnosis, to today but with our busy summer and our celebration Disney trip I haven't had a chance to put it together. So here's a picture of our guy. As you can see - Cancer Fears Him!

Last One

2010-07-22T14:47:00.005-04:00

On Tuesday, Joshua received his last IV chemo. It's the final time that chemo will be pushed into his veins. Now he will complete his 5 days of steroids and 28 days of oral chemo and then he's finished. He is one tough cookie!

It's Out!

2010-07-07T15:33:00.003-04:00

What a busy summer we are having. I didn't sign the boys up for any camps or events because my plan was to spend the summer enjoying the pool. Seems like as usual, life has different plans

Joshua went in the OR for the last time on the 22nd of June. He got his last does of chemo into his spinal fluid and he also had his infusaport removed. We are near the end! He will now get the last two IV chemo doses through a vein stick. Neither one of us are looking forward to it but having the port out early saves us from an OR visit and another surgery. Of course in true Czorapinski fashion, we just can't escape the hospital or OR. Noah will have surgery on July 24th for his undecended testicle. It should be routine but Noah doesn't do very well with anesthesia so it should be an adventure to say the least. The good news is that after this surgery for Noah, we will be about three weeks out from the end of chemo and our celebration Disney Trip. I'm a little worried about the heat but after the 105 degree temps we've been having here, we're up for anything.

I also wanted to mention that we are looking forward to this upcoming week when the Believe in Tomorrow Foundation is sending us to Deep Creek Lake for the week. We will relax, fish, hike, and just enjoy some family time at their house on Wisp Mountain. We're hoping that being in the mountains will hopefully let us escape a little of this heat for a while. What a wonderful organization!

So that's it. We're busy enjoying summer and loving every minute of ignoring the cancer that has interfered with our lives for the last 4 years. We're starting to move into the next chapter and it is so nice. I am going to try to post some summer fun pictures within the week so check back for them.

The day is coming

2010-06-09T16:53:00.003-04:00

I haven't posted much lately. Seems like we're just too busy living life and I like that. We have a ton of plans for the summer which include the beach, the pool, relaxing and a very special vacation. You see, it's time. Joshua is finishing up with treatment. We're ready to put the cancer behind us and move ahead. We're ready to not only start a new chapter in life, but a whole new book. While we'll never be able to forget about the cancer and while Joshua will have to have follow up appointments his whole life, we can put the blood draws, blood counts, spinal taps and chemo behind us. We can let him walk into a store without wearing a mask or take a vacation and not have to worry about how close the hospital is to us. Some of this things will happen right away and some are still down the road, but they are coming.

It all begins two days after the twins 5th birthday, when on June 22nd Joshua will have his last spinal tap. I lost count at some point but this is something like number 25 or so. While in the OR, they will also remove the port from his chest. That is a big deal. Then Joshua will receive his chemo through an IV for the last two months and on August 10th, he will receive his LAST chemo treatment. We mean it this time. His LAST one! And just like any athlete who has completed a marathon of a race, we're going to celebrate. "Joshua, you've just finished 4 and a half years of kicking cancer's butt. How do you want to celebrate?" Well friends. We're going to Disney World!

A Proud Day

2010-05-26T22:19:00.003-04:00

I'm too tired to write a post right now that will come later, but this picture says a lot...

So long pre-school it's been fun. Kindergarten here they come!

Boy Parts

2010-05-13T15:45:00.003-04:00

I was always a modest child. Growing up, there was never any fear of me showing skin as a teenager and I don't even think I used the word penis in public until I had Noah. Boy has that changed since then. First, as you all know Joshua had a testicular relapse 2 years ago. All three of my boys had to have special appointments set up to be circumcised because they were such tiny babies, and then Joshua wouldn't stop bleeding so we had to rush him back to the doctor so that they could put silver nitrate on it to stop the bleeding. OUCH! And now we have more to add to more to our boy part adventures.

If you remember, we had to have a knot removed from Noah's leg last fall. Turned out to be nothing but in the process we found that one of his testicles had retracted and was no longer descended. We were told not to rush but that he would probably need surgery. This past week, Jeff and I took Noah to Hopkins to see the same urologist that did Joshua's biopsy. He confirmed that yes, Noah needs surgery this summer to pull that testicle down. So in case your keeping tabs, that means Joshua will have surgery in June for a spinal tap and hopefully to have his port removed. Noah will have surgery in July for the testicle and then Joshua will finish chemo in August. Busy summer for us.

Oh and just to give you a good laugh at us Czorapinskis, remember how I am always talking about Adam and his allergies. You know. I've written about how I have given him Zyrtec, Singulair AND Nasonex year round for the past 3 years. Well, we had him allergy tested last week and he's allergic to....

NOTHING! Can't wait to see what Noah is allergic to in June when we have him tested. I do know that he has to have a tree nut allergy since he breaks out in hives if he's eaten them but we'll see since these kids always keep me on my toes!

Wow. What a Ride.

2010-04-06T09:06:00.004-04:00

Spring break is supposed to be full of fun, sun and sand. Ours was planned for the wonderful Outer Banks and some relaxation. We had planned for a few roller coaster just not the roller coaster of life.

Our spring break has been full of hospitals, of course. I'll start by saying that last Saturday Joshua woke up with a fever. Jeff took him up to Hopkins where his counts were good enough not to be admitted but he needed IV antibiotics for both Saturday and Sunday. That resulted in two trips to Hopkins and ate up the weekend. Joshua was tested while there, and he was positive for a respiratory virus which explained the fever and his nasty cough. And so the fun begins.

Tuesday was the day that Joshua was scheduled for the OR and a spinal tap. That didn't happen because of the cough so we decided that since his counts were still good, we would go ahead with the chemo and bump the spinal until next month. By Tuesday night, Joshua was still doing well although he started steroids and therefore had an attitude. Jeff called from work to say that he wasn't feeling well and thought he had an ear/sinus infection. He made himself an appointment to see the doctor after work. Well sure enough he did have an infection and the doctor prescribed Augmentin, which Jeff had taken many times before. After getting home and eating dinner, he took the medication. It was about 40 minutes after that when Jeff and I had a conversation that went like this.

Jeff: I don't feel well.

Ami: Sorry. Augmentin can make you nauseous.

Jeff: I feel like I am going to pass out.

Ami: Really? That bad, huh?

Jeff: My lips and tongue are tingly.

Ami: Oh NO!

And so after I jumped up to get the phone and call 911, Jeff proceeded to pass out. An ambulance ride and ER visit confirms that Jeff is highly allergic to Augmentin and it dropped his blood pressure to extremely low levels. More fun for us but it doesn't stop there. After getting home by 4:30 am, I had Adam to the doctor by 10:30 am as he had a sinus infection and junky lungs too. More steroids and antibiotics for him. Will we ever catch a break? Maybe on our spring break vacation.

We were scheduled to leave on our vacation to the Outer Banks on Thursday evening. To give Jeff some time to recover, we decided to leave on Friday morning. The plan was to head to Williamsburg and visit Busch Gardens on Friday and then get up and leave for the Outer Banks on Saturday morning. True to Czorapinski form, we got off an hour later than we wanted and then got stuck in traffic so we finally arrived at Busch Gardens at 3:30 on Friday afternoon. Joshua wasn't feeling too well from the steroids so we weren't able to do much, but at least we got to go on a few rides. I was looking forward to the steroids wearing off and a nice week at the beach.

Saturday morning came along and we were off again. The drive to Nags Head was thankfully uneventful and we did a little shopping before our 4 pm check in. I have to say that the house on the beach was great but we would soon find out that we weren't meant to be there long. That is because by 5 am on Monday morning Joshua decided to spike a fever. Good thing I researched and we had rented a house right across the highway from the Outer Banks hospital. After getting a chest x-ray and labs run, Johns Hopkins decided it wanted Joshua in their care. Fine. Jeff and I would just put him in the car and make the 6 hour drive. Nope. Seems that since his ANC was a whopping 100, we needed to get a transport. A really cool transport.

Hopkins sent down it's MedEvac helicopter for Joshua. He and I loaded up and were on our way. As soon as we heard that they were sending the helicopter, Jeff hit the road so he wouldn't be far behind us. We had to leave Adam and Noah with the grandparents and now, we're here. Back in Maryland, back at Hopkins and back to reality. It just plain sucks. But, it's what is best and we know that. We're going to work on getting Joshua's virus gone, counts up and busting out of the hospital. We're also going to work on planning another vacation. Just maybe this one will be a little closer to home!

Even the dog!

2010-03-26T10:24:00.003-04:00

What a week. Seems like the winter isn't quite over at least on the illness front. Joshua has come down with a nasty cough for which he was prescribed steroids. He will finish them today and start them again on Tuesday for his chemo schedule. He also has a nasty ear and sinus infection so he's on an antibiotic for that and needs daily nebs for the cough. Adam is also getting nebs for his cough and therefore is moody as that is an inhaled steroid. And finally, the dog seems to be allergic to something, I think it's her food, and she has scratched spots on her body that required a trip to the vet for you guessed it, steroids!

Calgon, PLEASE take me away!

Just because it's been so long

2010-03-09T20:13:00.003-05:00

Not only will I give you two posts in one night, I also thought I would post a few pics so everyone could see my handsome little men!

All about Adam

2010-03-09T19:47:00.002-05:00

I don't usually write much about Adam. He's such an easy going child that there isn't much to say. He's a great kid that is generally healthy and I am so grateful for that. He is smart as a whip, has a very extensive vocabulary of which I never know what new word he may use, and he is so excited about being 5, going to kindergarten, losing his teeth and just being like his big brother. But I just have to tell you all about a few things Adam has said/done over the past few weeks that have given me a little chuckle. I think God gave me Adam just so he could do these things on days that I really need a laugh.

First, a few weeks ago I was taking the little man into school. Joshua had to stay at home since he wasn't feeling too well so I just took Adam. Usually we have a car line drop off but on this particular day I needed to talk to his teachers so I walked him inside. As we were going through the parking lot, Adam looks down at the handicap parking space and tells me, "that's where all the old ladies have to park." I don't know where he came up with that one. I would say that it was the wheelchair that he was associating with being old, but he specified "ladies."

Next, I go to pick the twins up at school one day this past week. One of their teachers is outside and tells me she has a story for me. Great. Anytime I hear that from one of my kids teachers, my insides tighten up and I start to feel nauseous. Anyway, she goes on to tell me about how during the day they were playing around and Adam goes up to his other teacher and grabs her boobs. He then yells, "I got your hips!" Oh Adam! Jeff says he's sure that Adam will try that later in life too. I think his teachers need to work more on teaching body parts!

One Day

2010-02-24T15:09:00.004-05:00

One day, they tell me, that I will look back at this time and laugh. One day, they tell me, to take at a time. One day, they say, I will miss these days.

Today is not the one day. Today, I wonder if I'll ever make it to that one day so that I can look back and laugh. Today, I think that one day seems so, so far away.

So, what makes me say all of this? Well, as usual a lot has been going on with the Czorapinski's. First, Noah only spent one day in his new school. Apparently, after reading his educational testing report and listening to all of our concerns, they felt that Noah would do fine. We on the other hand were never informed that he would have to write in cursive. Yes, cursive. In kindergarten. No print. Only cursive. Great. So looking like idiots, we unenrolled him and re enrolled him back in the public school. We asked for a new teacher and it looked as though things were going in the right direction. That is until one day (two days ago) his new teacher calls to tell me that Noah has told a child in the class he would "burn down their house." But, this was after he made another child cry and told her "he would beat up her dad." Parenting. It sucks. So, after taking away some privileges, making Noah write apology notes and talking to him about hurting others, I sent him to school yesterday and prayed for the best. His teacher calls in the afternoon to say that he called another child "the dumbest" and called the same little girl as before, fat. I have no idea where he is hearing this stuff or coming up with it. He just isn't my sweet little Noah. And if one day I'm going to look back on these days and smile, I can't imagine what must be ahead of me! Of course, after talking some more and taking away a few more things that are really important to Noah, he had a great day yesterday and promises me that it won't happen again. We'll see about that.

As for Joshua, he has RSV and therefore we ended up in the Hopkins ER last week. He was able to be discharged but after being up all night, we were all exhausted. His check up on Tuesday reveled that he has a small whole in his ear. Seems that his ears needed to drain themselves and this can sometimes happen. It will heal and not cause any damage but no wonder the child was screaming with his ears last week.

Adam is doing well. I feel like I don't write a lot about Adam but to be honest, he's our most "normal" child. He is developing a love of soccer and is always kicking the ball around the house. He's actually pretty good and I'm sure his Uncle Nick will love that he enjoys soccer so much.

Jeff and I are surviving. We have been stressed beyond what we ever thought we could handle and yet we are still functioning. We are looking forward to spring and summer and what they will bring. We are planning a family trip to Nags Head and preparing for the twins to turn 5. I can't believe my babies will be starting kindergarten in the fall. That's the "one day" that has really snuck up on me for sure. But, we are mostly preparing for August 11th. Because that's the day. The one day. The day that Joshua WILL receive his last and final dose of chemotherapy. I know we said it before and then there was that whole relapse thing but this time this is it. August 11th. Mark your calendars. That's the day. The one day that I have been waiting for since April 17, 2006 when this whole nightmare began. It is the one day that we will forget all the minor things that are happening in our lives, the years of chemo, the fears, the struggles, the pain. It is the one day that we will start over. It is the one day that will make me forget all the days like today. Okay so maybe not forget them, but at least make look back and say "yeah, but that was just one day......"

Decisions, Decisions

2010-01-27T09:53:00.001-05:00

Being a parent is tough. I mean, you have to make decisions that will impact your children for the rest of their lives. Sometimes parenting just isn't fun!

Recently, Jeff and I decided to take matters into our own hands with Noah's education. We know that he is struggling in school. I've been working with him on his letters, letter sounds, and sight words. He gets them. He just takes a really long time to do it and it is very hard to help him make sense of it all. Jeff and I have known that he's falling behind in school even with all of our help. His teacher has made no comments to us other than, "please practice." We've tried to make her see that we are concerned parents and we're working with Noah but we know that he's just not keeping up. We have contacted the school guidance counselor numerous times and have not found the answers we were looking for. We are so frustrated with the school, so Jeff and I took it upon ourselves to have Noah educationally tested. Back in December, he met with a psychologist to have psycho-educational testing completed. He asked no questions and did as he was asked. I am so proud of that boy. He really tries hard to please. Sometimes it's just beyond his ability. Anyway, this past week Jeff and I got the answers we were looking for.

It seems as though Noah has a "developmental delay." His testing is falling at what the psychologist called a low average level. Basically, he's behind. Not because he doesn't want to do the work. Noah is behind because his ability isn't at the level that it should be for a 6 year old. He's more on the level of a pre-k student rather than a kindergartner. The psychologist said that Noah would need a loving, understanding teacher that would modify directions, understand and work with him at his ability, and provide him ample time to complete and understand his work. She said he would need an Individualized Educational Plan through the school, and possibly speech therapy. There was a lot more to it, but those are some of the basics. He's just a little behind all of his peers. Not a surprise to Jeff and I but the question is, how do we move forward and help him to be successful.

So, after debating all the options and evaluating the issues we've already experienced with the public school (and believe me, there are just WAY too many to write about), we've made a tough decision. We've decided to pull Noah from everything that he knows and put him in a small Christian private school. We really feel that with a smaller classroom, more direct contact with the teacher/school, and loving understanding surroundings, Noah will be successful. We ask for prayers that Noah will love his new school and that he will get the attention and understanding that he needs. We ask for prayers that Noah will understand and that he will catch up. God has lead us to this decision and Jeff and I believe that it will all work out in the end. He will start in February and finish out the year in the new school.

And speaking of prayers. I recently met a child at Hopkins who happens to be a friend of a friend of a friend. Caeley is a 4 year old who was recently diagnosed with the same type of leukemia as Joshua. She has 13 month old twin siblings and her parents are struggling to make sense of the cancer world. I feel for them as Jeff and I know what it is like to have small children, twins and a kid with cancer. Please take the time to say a prayer for Caeley that God sees her through all that she will endure. Also, please pray for her parents, Phil and Michelle, that God gives them the strength to see Caeley through her battle and to help them lead a "normal" life. We greatly appreciate all of these prayers.

Moving Right Along

2010-01-18T19:44:00.004-05:00

It really has been a while since I last sat down to write. I'm going to try to tell you all about everything that's been going on in the Czorapinski house over the past few months but I just might run out of steam before I finish. One because we've been into so much and two because Jullian Michael just kicked my butt. Anyway, we've been pretty blessed and I'd like to tell you all about it.

First, Christmas was wonderful. They boys were spoiled by Santa as well as their grandparents. They got way too many toys and we're still trying to find homes for all of them. They loved having our Elf on the Shelf Elliott around. Elliott would report back to Santa every night the details of the day. Some nights I swear that Elliott had to have lied because Santa still came. Noah's favorite part of the day was finding Elliott in his hiding spot each morning. Adam would remind everyone that Elliott was watching and Joshua enjoyed having little chats with him. Fun times. The spirit of Santa is alive and well in this house.

New Year's came along just the way we like it. Quiet and uneventful. Last year, we celebrated the new year with Jeff and Joshua at Hopkins getting chemo so this year we were thankful to have everyone under one roof. The boys celebrated by having some "bubbly juice" aka sparkling grape juice. Mind you that this was about 8 pm as Mommy and boys were in bed and snoozing by 10 pm! Whoo Hoo. Good times!

And now January is here. I just celebrated my, cough cough, 21st birthday and was treated to some new lenses for my camera. Expect some great pics to be posted soon. The boys are all still enjoying school and Joshua is cruising along in the world of chemo. Noah started lacrosse a few weeks ago and loves it. He is also set to play t-ball again this spring and is trying really hard in school. Jeff and I have had a lot of tough decisions to make as far as Noah and school but we're praying hard for the right answers and hopefully we'll make the choices that are best for him. Adam on the other hand has no problems with school. He is making friends, learning lots and is patiently waiting to turn 5 so that his "teeth with be loose" and he "can play soccer on the field." He is such a fun child. And our little man Joshua. Joshua has been in school surrounded by germs and junk since September. He has fought off colds and is taking his chemo and steroids like a champ. His last spinal tap went smoothly and he told all his teachers about how he got a needle in his back and "didn't even feel it because he was asleep."

And so this is what us Czorapinski's have been up to these days. We are looking forward to traveling to Nags Head for Easter and having a week to just enjoy some family time. Pray for some warmer weather and healthy kids.

That's What Christmas is All About Charlie Brown

2009-12-21T13:52:00.002-05:00

Anyone who knows me, and I mean Really knows me, knows that I love me some Peanuts at Christmas. Not the nut kind but the Snoopy, Charlie Brown, Linus kind. My favorite part in the Charlie Brown Christmas movie is when Linus stands on the stage and tells everyone the true meaning of Christmas. It truly is "what Christmas is all about."

This past week, we were reminded about what is so important in life. Okay, so we were slapped in the face with it but that's besides the point. On Tuesday, I took Joshua to Hopkins for his routine weekly chemo. During the visit, a number of doctors filed into the room to tell me that some "blasts" had shown up in Joshua's blood. Okay. Bad. Leukemia is a result of bad "blasts." Scary time. Anyway, the doctors couldn't tell what type of blasts they were as your body can also spit out blasts when the bone marrow is really reved up fighting a virus or recovering from something such as chemo. This has happened only once before and that was back in October. The doctors wanted to wait on the chemo and run blood labs again on Thursday. Good for them to make sure the blasts go away. Bad for us as it was two days of complete stress. (Bye, bye to a few more years of my life!)

So Thursday came along and the moral of the story is that blasts were gone. Chemo was given and life goes back to our version of normal. But, as this scare happened so close to Christmas, it was a reminder that it doesn't matter what's under the tree, what gift you can't find at the store or any thing else. What matters is that you spend time with your family and friends. You enjoy every minute you have with them. You savor the laughs, the smiles, the memories. And remember in the end, that "that's what Christmas is all about!"

Merry Christmas everyone. I hope that you enjoy spending time with the ones that you love. And for those of you missing someone in your life, I hope that the memories you have from holiday's past bring you some comfort and smiles this holiday season.

All I want for Christmas...

2009-12-03T15:17:00.002-05:00

is time. First, let me apologize for not updating this blog often. I also want to apologize as I don't know if I will ever get to finish telling you all about our wonderful, exhausting, adventurous, amazing Make-A-Wish trip. I just too bloody tired.

These beasts, I mean, these children that I gave birth to are driving me crazy. I don't know what happened but having a 6 and two 4 year old boys who are now all going to school is about to kill me. The fighting, the arguing, the touching, the kicking, the... Well, you get the picture. I spend my days breaking up fights, cleaning up the messes, fixing the drinks, food, broken toys, that by the time the evening rolls around and Jeff comes through the door, I am finished. Not finished for the day as I still have dinner to cook, medicines to dish out, baths to give, teeth to brush and boys to tuck in but, I'm toast. So as for writing, it has to come behind all of that plus the laundry. See, no time. Oh, and I forgot that I am the secretary for the twin's school. Why did I volunteer to do that again?

So, when the boys are about 18 and going off to college, I promise to tell you all about the time we went to Disney. When they were 6 and 4. Until then, I've got laundry to do and you'll have to settle for blog posts about that. At least when I find time to write them!

(On a side note, I want to ask for prayers for my friend Anissa. I've posted a few times about her as well as her daughter Peyton. Peyton is a leukemia survivor and was diagnosed around the same time that Joshua was diagnosed. Through the power of the internet, Anissa and I built a friendship. About two weeks ago, Anissa suffered a stroke and is in the hospital. Please pray for her and feel free to keep up on her condition at www.hope4peyton.org.)

Day 1

2009-11-23T20:51:00.002-05:00

So we arrive at GKTW and are instantly taken to a different world. The volunteers there gave the boys t-shirts as well as their second stuffed animals which were a Mickey for Joshua and mini Shamu's for Adam and Noah. We were given a quick intro to the village and then directed to Katie's Kitchen for lunch. All the food at Katie's Kitchen is donated by Boston Market. Talk about good stuff! After lunch, we were driven to our villa in a golf cart. The boys thought this was cool. The villa was much more than anyone could have asked for. It was a two bedroom, two bath villa with all the amenities of home. The first thing you need to know about GKTW is that no money ever changes hands there. The place is run on about 3 to 5,000 volunteers as well as a few paid employees. The second thing is that everything is there for the kids. The villa's are set up so that the kids bedroom has a HUGE bathroom attached with a whirlpool bathtub and walk in shower. The adult bedroom doesn't have a bathroom. Our bathroom was in the hall and very tiny. Very fitting.

After exploring the villa, it was off to ice cream. Our first of many trips to the Ice Cream Palace during the week. Here we found Friendly's ice cream along with all the fixings and toppings you could dream of. We also found it funny to watch Jeff try and sit at the child sized table and chairs. While the boys finished up their ice cream, I went off to an orientation meeting so that I could pick up all the tickets to the parks as well as learn more details of the events at the village. And boy does the village have events.

At my meeting I learned that we had 3 day park hopper tickets to Disney, 2 day park hopper tickets to Universal Studios as well as 1 day at SeaWorld. And if that wasn't enough, they could get us tickets to just about any show, dinner theater or attraction in and around the Orlando area. There would be no waiting in ANY line at ANY of these parks either. We were to just show the guest assistance pass that said we were with GKTW and off we went. Talk about service! I also learned that every day the village had something going on. In the mornings, the characters would come to GKTW for pictures with the kids and there was always something going on in the evening such as on Thursday night when it was Christmas. GKTW holds Christmas every Thursday night. Santa comes and each child gets to go and sit on Santa's lap for a picture. Then, they are able to pick out one gift from Santa's stash. (more on this when I post about Thursday's adventure)

After my meeting, I met up with the gang and we headed to Walmart to gather some supplies for the week. The boys had been fishing in the meantime and had already taken a ride on the village choo choo train. Once again, very child sized and funny to see Jeff fit in the car!

Finally, we got back to the villa and were all in bed by 8pm. After starting the day so early, we had to get some rest so we could be ready to go for day 2 and our first day at the parks!

As Promised

2009-11-22T21:28:00.002-05:00

So I'm finally getting around to posting about our trip. Here it goes...

On Friday night we had the wonderful volunteers from Make a Wish come to our house. They arrived with cookies and ice cream as well as stuffed Disney characters for the boys. I hadn't told them what characters are their favorites so I was amazed when they showed up with a Mickey (Adam's favorite), Goofy (Noah's) and a Pluto (Joshua's). They boys were ecstatic and it was so nice to see how happy those stuffed animals made them. Jeff and I were amazed at how generous the Make-A-Wish organization can be. When we first talked to them about Joshua's wish, we thought that they would send us to Disney and give us a place to stay. That's exactly what they did. And then they did SOOOO much more. Make-A-Wish provided us with spending money, transportation, lodging and a lifetime of memories. They are truly a special organization.

So after the Make-A-Wish volunteers left, we got the boys in bed and Jeff and I sat back and reflected on what had just happened. We were already amazed at what an opportunity this was for us and we hadn't even left yet. But, we were in for so much more.

Saturday morning came along and at 5:30 am, a 10 passenger limo pulls up to take us to the airport. I'm telling you, Make-A-Wish goes ALL out! The boys thought the car was really cool and Jeff and I were just as impressed. The trip to the airport took no time considering it was early on a Saturday. We got through security at the airport and waited for our plane. Pretty soon, we were on a Southwest airplane and on our way to Orlando.

Once we arrived in Orlando, we made our way toward baggage claim when we saw a Give Kids the World volunteer holding a sign that said, "Give Kids the World Welcomes Joshua Czorapinski." Talk about cool. The funny thing is that the volunteer was originally from Annapolis, MD. Anyway, she took us to pick up our bags and then guided us to the car rental counter where everything was already taken care of and we just had to pick up the keys to our mini van. The volunteer gave us our directions and we were off to Give Kids the World (aka the most amazing, wonderful, generous place on earth).

Okay so that's the beginning of our trip. Check back soon for the continuing story!

Make-A-Wish Trip Video!

2009-11-19T21:26:00.005-05:00

Here is a video I've put together of our trip. I promise I will write about all the details but life has been SUPER busy since we've gotten back. For those of you who know me, I haven't even unpacked yet so that should tell you something!

Enjoy and be sure to let me know what you think!

We're Back!

2009-11-15T20:20:00.001-05:00

I have a ton to write about but we are still recovering from a wonderful week. I promise to post pics and tell you all about our trip at some point this week.

It's almost here.

2009-11-05T13:18:00.002-05:00

I just received our itinerary from Make-A-Wish. Forget the kids, I'm SOOOO excited. Being a Disney fanatic, I was so glad that Joshua chose Disney as his wish. I won't spoil all of the exciting things they have planned for us just yet as I barely know half of them myself, but we leave at 5:30 am on Saturday to head for the airport. I will try to update the blog every day with a picture or two so if you're interested, check back daily! Orlando, here we come!

2009-10-23T17:43:00.000-04:00

Time really does go by so fast. Tomorrow our oldest will turn 6. Six years that Jeff and I have been parents. Because hey, let's face it. Your oldest child's birthday is the anniversary of the day that your life was forever changed and your heart started to beat outside of your body. My heart is growing into an adorable, wonderful little man! Happy Birthday Noah!

Birth

1st Birthday

2nd Birthday

Oh and if you haven't noticed, our Disney trip is fast approaching. I'll post more about that as soon as Make A Wish sends me our agenda!

Pictures

2009-10-08T18:51:00.005-04:00

Finally a family portrait. When we were at the beach with the Believe in Tomorrow Foundation, they provided a beach portrait session for our family with John Mick Photography. Here are some of the results. Enjoy.

Miss Us?

2009-10-01T20:48:00.004-04:00

It's been a while since I updated this blog. Life is going by at such a fast pace these days. Between taking Joshua to Hopkins, getting the boys to school, cleaning the house, and all the other odds and ends of life, I've been too exhausted to write. But tonight, I made it a point to sit down and do just that.

As far as our favorite cancer patient goes, life is good. He's loving school, looking good and just enjoying being a four year old little boy. He currently getting the chemo that affects his joints and gave him a lot of trouble last time he got it, but we've reduced the dosage by 25% so hopefully we won't see the same intense side effects we did the last time. He still has two more weeks of this type of chemo but so far things are good. Joshua is very excited about our upcoming Disney trip and has been talking more and more about it. He was also thrilled last week when Noah and Adam both had to stay home from school and he got to go on his own. Funny turn of events, huh?

Adam is loving school as well. He is currently battling a nasty cold but doing well over all. He doesn't usually let much get him down. Even though he feels yucky, you can still hear him singing to himself as he falls asleep at night. Adam has always been our child that must talk/sing himself to sleep. Last night, Jeff and I laughed as we heard an extra loud version of Jingle Bells from two little boys who don't quite know all the words! Adam was also very excited last week as he got to bring home the class stuffed animal "Frederick the Frog." Joshua of course was devastated that it wasn't his turn and couldn't comprehend that he and Adam have the best situation in the class because they get double the amount of home time with Frederick.

Our Noah is still hanging in there. School is a big adjustment for him and Jeff and I are really proud of how hard he's trying with all the academics. We meet with the surgeon this coming up Tuesday to make sure his leg healed properly from surgery, which I think it did, and go over the results of his testicular ultrasound. It seems as if Noah has an undecended testicle that may require some more surgery. If we ever get to a point in life where we don't have to see at least one doctor in a week I'm not sure I'd know what to do with myself!

And finally tonight, I want to tell you about a friend of ours and the sacrifice he's made to give a special gift.

Our friend Keith has a sister that needed a kidney transplant. He ended up being a match and today he and his sister went into the operating room where they removed one of Keith's kidneys and placed it in his sister's body. What an amazing gift. I know there are a lot of us out there that say we would give someone this gift but it really does take a special person to make such a sacrifice. So tonight, if you don't mind, say a little prayer for Keith and his sister. Pray that the transplant works and that they both recover quickly. We appreciate it!

Going Well

2009-09-15T19:07:00.002-04:00

Things in the Czorapinski house are going well. You don't see that statement too often on here but I have to say that it's the truth. Adam and Joshua LOVE school. As a matter of fact, I went to pick them up the other day and the teacher only brought out Adam. When I said, "aren't you missing one" she said that Joshua had decided he didn't want to leave school. Funny kid. They are enjoying school and socializing so much that it brings tears to my eyes. It's the little things in life that most people take for granted that mean so much to our family.

As for Noah, he had surgery on Thursday and all went well. He had a knot on the back of his leg and we were unsure as to what it was. When you are surrounded by kids with cancer and tumors all the time of course your mind goes to dark places. We had consulted a surgeon at the recommendation of Noah's pediatrician, who felt that it was nothing to worry about but just to be sure, he would remove the knot. So, surgery was this past Thursday and preliminary results are that it was just a calcified knot and nothing serious. Whew!

So life has been busy. We not only have a million doctors appointments, we now have two different school schedules to keep track of. Busy times but life is good!

Loving Life!

2009-09-09T11:54:00.003-04:00

Adam and Joshua LOVE pre-k. Okay so it was only day one but they couldn't stop talking about all that they did. I knew half of their day by the time I had them both seat belted in the van!

What am I going to do?

2009-09-07T21:01:00.002-04:00

Tomorrow is the day. It's the day that Adam and Joshua will go off to school for the very first time. Pre-K. I am sitting here tonight and thinking that for the past four years, I've had these boys by my side. Every day for the most part and tomorrow, they go off and start school. Of course I'm worried about germs and sickness and all the yuck that they will bring home. I know that we'll have to spend a few days at Hotel Hopkins because Joshua picked up something at school. But, they need to go. Adam has been held back and has waited to go to school. Joshua needs to go off and learn that mommy isn't always there. And well, Mommy needs to learn what to do with the next chapter in life. I've always thought about what to do when we get past the cancer stuff. I have ideas and thoughts but cancer has consumed so much of my life that I've never got past the "day dreaming" part. The reality is that life is going on with the cancer or without it and the kids going to school is a part of that. The boys have their plan and now I have to figure out mine. Of course that's after I catch up on what's been put aside for the past four years!

First Day of School

2009-08-31T15:04:00.003-04:00

Noah Style

I can't tell you how excited this kid was to get on the bus this morning. My heart broke just a little as I looked in the window and there he was with that big grin and waving to his mama. They are just growing up so fast. I can't believe that our first born is now a kindergartner!

Back to Reality

2009-08-26T08:50:00.002-04:00

We made it back. I can't say enough about how wonderful the Believe in Tomorrow Foundation is at helping cancer families make memories. We had such a wonderful week. Although we've been to Ocean City a million times, this time was most definitely different. The boys loved every minute of the trip and for once we actually felt normal. It was just so nice.

So now that we're back, it's back to reality. Joshua had his weekly count check on Monday and his counts are perfect. Right were the doctors want them and closer to the higher end of that mark which is right where I want them. They even gave us next week off from having to come up for counts. Nice!

Noah had his visit with school on Tuesday and Jeff and I were very happy with his teacher. I know that we had heard a lot of horror stories and although a few of them very well seem like they could be true, I think she may be a good fit for Noah. Time will tell but I can already see that she will expect a lot from our boy.

So we enter into a whole new world now. Noah starts school on Monday and the twins will follow on the 8th. Pre-K and Kindergarten. Homework and school buses. Teachers and PTA's. And to think I was wondering what I was going to do with all that free time!

**More vacation pictures to come shortly as well as some shots with my new camera!!!!**

Beach Time

2009-08-20T07:57:00.004-04:00

We're having a blast. The boys are loving the beach and we all became pirate the other day and went out treasure hunting. The pirate adventure was great and I recommend it to anyone with kids that are into pirates. We've enjoyed the water slides and some nice dinners this week as well. Last night, the boys made my year by cooperating for a family beach portrait session. Yes, I just may be able to hang a family picture on the wall where all three boys are happy, smiling and looking at the camera. Of course, I haven't seen the photo yet but the boys were happy so it has potential! Never mind the fact that Jeff and I bribed them heavily. You have to do what you have to do, right?!

Here are just a few beach shots for you. Enjoy!

Joshua enjoying digging in the sand

Noah and Adam ready to try the surf

Our great friends happen to be at the beach as well this week and met up with us for some fun in the sun.

We're Here!

2009-08-17T08:47:00.006-04:00

We're on vacation. Yes, vacation. And we're ready for a fun filled week. Today, Jeff and I have to take Joshua for a blood draw but after that, we're going to forget (as best as any cancer parent can) about the cancer and sickness and hospitals and enjoy the beach.

Here are a few shots from the short time that we've been here.

Off!

2009-08-14T22:31:00.001-04:00

The cast is off and we're off to the beach for a week! I'll try to download pictures and update while we're there but with three boys I can't guarantee anything. Wish us luck!!!

Ice cream makes everthing better!

2009-08-13T07:44:00.003-04:00

Today is Dairy Queen's miracle treat day. With every purchase of one of their delicious blizzards, a portion of the proceeds will go to support Children's Miracle Network hospitals like Johns Hopkins. What could be better than eating a blizzard and knowing that with each calorie loaded bite, you're helping sick kids like our boy Joshua! Now that's a reason to celebrate. I might just have to go twice today ;-).

And since I've started this post on a happy note and I really haven't had a happy post lately, I'm going to continue with the happiness. Joshua finally made counts on Monday and was able to go into the OR for a spinal tap. The spinal tap. The one that puts us into maintenance. Yes, M-A-I-N-T-E-N-A-N-C-E! That means we have another year from now and we're finished. I'm not getting too excited as it's still a long road and he has some chemo left that seems to be hard on his body but it does mean that we're getting there. Again. We've seen maintenance before and I liked it. It was comfortable and easier. Now, this time could be different as he's had a LOT more chemo and he'll be starting school in September. (insert Mommy smiling here) But, we're into maintenance and that means that if for some reason he doesn't make counts and can't get his chemo, we just skip it and keep going. No delaying, stopping or making up!

Now, on to the next topic. After Joshua fell last week and hurt his arm, I took him to see doctor #2. Doctor #2 was smart enough to cut the cast in case he started to swell. It's a good thing he did that as the next day, his arm was huge. So, we no longer see doctor #1 and doctor #2 has now become doctor #1. Did you follow that? And now for the best part. Today, we see the doctor and there is talk about the cast coming off. Yes, off. Just in time for our vacation...

Vacation. I said it. Okay so I wrote it but close enough. We leave on Saturday for a week at the beach. We are able to take this trip thanks to the Believe in Tomorrow Foundation. We will go and be able to do all the things that families should be able to do during the summer. We are so thankful for this opportunity. We'll even be able to get Joshua's blood counts down there and have the results faxed to Hopkins so that we don't have to waste a day coming home for a clinic visit. Now, just pray that Joshua stays in good health and that we don't have any unplanned fevers.

So there you have it. A happy post. I know. From the Czorapinski's. Who would have thought. Now go get some ice cream!!!

That light at the end of the tunnel really is a train!

2009-08-07T14:54:00.002-04:00

I swear it never ends. I haven't updated because Joshua has been attached to my hip. He had a really difficult time with his most recent chemo/steroids. He lost some of his hair again so Jeff and I decided to give a buzz cut. He had severe back pain that required oxycodone for about 4 days and gained 6 pounds in a week. But that's not the worst of it. He didn't make counts on Tuesday for his spinal tap to start maintenance. That's good as it will give him a much needed break but it does make us have to move our Disney trip. So that countdown clock in the side bar will be changing as soon as I get a new date (sorry Tylar). Also, yesterday Joshua fell down the steps and hurt his broken arm. That resulted in a x-ray. The stupid ortho doctors at Hopkins didn't even want to see him until his scheduled appointment on Monday. Taking it upon ourselves, Jeff and I got him an appointment to see the "second opinion" doctor and he was able to cut the cast in case of swelling. He said the x-ray still looked good although the bones have never been even close to straight or even together for that point. Today, the arm is swollen so it's a good thing I did take him to another doctor. He's still in a little pain so we're back to the pain meds. It's never ending.

For Crying Out Loud

2009-07-28T19:49:00.007-04:00

Chemo stinks. I've said it before but it really does. You know what stinks even more? Cancer. And you know what stinks even more than that? When kids have cancer.

Joshua's had a real rough time this month. The steroids and chemo combo are causing LOTS of back and leg pain. So much pain that oxycodone, a tylenol substitute, and even morphine aren't really keeping him comfortable for long. It's tough to watch and even tougher to listen to his cries. As a parent, I just want to make it better. As a human, I can not. Each cry and wimper stab right into my heart. So, lots of prayers have been said this week. Not that I don't say prayers every single day, I've just doubled up this past month. God doesn't give you a prayers cap does he? I sure hope not.

As for the results of everything else that is the Czorapinski's, we got a second opinion on Joshua's arm. The doctor said that while yes it is very crooked, it will straighten out. Guess we'll pray about that one and let God go to work. And speaking of praying, Jeff and I are praying for guidance as to what to do with Noah and kindergarten. We have toured one of the Christian schools here on the island and tomorrow we'll check out the other one. We aren't sure that Noah will go to one of those over the public school, but we're exploring all of the options. We're praying that God will guide us toward the right place for Noah.

But that's enough about us. Right now there are a few other families out there that could use your prayers. A childhood friend of mine needs prayers for her son Clark. He's had a rough start in life and right now they aren't sure what's going on with a spot that has shown up on a MRI. Please say a little prayer for Clark. Also, another friend of mine is in need. Her husband is in need of a kidney transplant. Right now, no one in their family is a match. If you are blood type O positive and would be willing to be tested, contact me. If you could please say a prayer that everything will work out for Mike, I would appreciate it.

And finally, for those pictures I've been promising you all. Enjoy!

The Luck of the Draw Ain't No Luck at All!

2009-07-23T15:48:00.003-04:00

I haven't updated this blog in a while. I've been meaning to, I swear. It's just that when I finally have a spare moment between doctors, kids, summer, stress, I don't feel like doing much of anything. Today, I have finally found enough energy to write a little.

What's been going on in our house? Let's see. Noah's meeting with the surgeon went well. While the doctor doesn't think that it's a tumor, (why do I hear Arnold saying "it's not a tumor" every time I make that comment) he doesn't quite know what the knot on the back of his leg is and therefore we will do surgery sometime in the next month or so to have it removed. More stress.

Noah was also assigned his teacher for the upcoming year. There are 4 kindergarten teachers at his school. I hear that two are wonderful, one is strict but loving and one is a 58 year old that has quite a reputation of being "very strict." Wanna guess which teach Noah got? Yep. I was okay with strict as I believe that a teacher needs to be disciplined yet understanding. But, recently I have heard more stories about her and if they are true, we're going to have problems. Noah is a very unique child that has had a very rough 6 years of life. Jeff and I are now weighing our options. Now please don't send me an e-mail telling me about speaking to the principal and trying to get him changed. It seems that EVERY other kindergarten parent has tried that and I'm sure there isn't any where to move him to. More stress.

Now on to Joshua. He's doing well. Okay so not really but in the big picture of cancer life, he's doing well. He has had a rough time with chemo these past few weeks. He has cried with back pain, leg pain, and headaches. He has been so lethargic that he couldn't keep his eyes open and would take 3-4 naps a day. While on steroids. Fun times. This week. His ANC is a whopping 270 so we're at risk for random fevers that could put us in the hospital for a few days. He also resumes steroids today and well, there goes the mortgage payment at the grocery store. Last week, his lunch would consist of 20 chicken nuggets, fries and then he would be talking about what he wanted when he finished that. For Christmas I swear I could buy him gift cards for Happy Meals and he'd be in heaven! As far as his broken arm goes, that's a whole different story. Last Friday we went for his follow up visit to orthopedics. First, I had to talk the doctor into changing his cast to a waterproof one. I was able to win that battle but the bad news is that Joshua's arm is REALLY crooked. The doctor said it "wasn't good, but not horrible." Great. We love crooked arms. Anyway, oncology seems to think that they can do better and so we're going on Monday to a new doctor for a second opinion. We're taking the chance that they will actually want to deal with an oncology kid that would have to be put under to have his arm rebroken and fixed. We'll have to see about that one. More stress.

And Adam. I don't write about Adam much. Adam is our child that just goes with the flow. He has very few medical problems, is smart as a whip and is just an easy child. Thank God he gave me at least one. Adam is enjoying summer. He's been to the pool a few times and has already begun to put his head under. He's ready for school to start and can't wait to use his new backpack. Jeff says that Adam is our child that would join the Navy seals just because he was bored. I have to agree.

So that's your little dose of Czorapinski life for now. Not always pretty but an adventure for sure! Oh, and I have some great pictures of the kids from this summer. Of course, they are on Jeff's phone as I always forget my camera and I can't upload them yet. But I will. SOON.

The week ahead and a bit of history

2009-07-13T13:19:00.005-04:00

We have quite a bit going on this week. Today, our Noah started his first day at summer day camp. My baby is growing up. He left me without thinking twice, talked all about going to "the yellow school," which is where he will go in the fall and is where camp is housed, and yet he held his little brothers hands as they we walked into camp. They say time flies when you're having fun but it also flies when one of your other children has cancer and you spend so much time focused on that matter that you forget to watch your other children grow.

This week brings us to another week of chemo, an ortho appointment, and an infusion of antibodies that resulted in a severe reaction last time, for Joshua. It brings a dentist appointment for me, a vet appointment for Lulu and an appointment with a surgeon for Noah.

As far as Joshua goes, he started his new phase of chemo this past week. This brings a month of steroids. So far, he's been a little clingy, moody and VERY tired. A small reminder that he's still in treatment and that chemo is tough on his little body. We're almost there though. Right?

Noah, on the other hand, has had a bump develop on the back of his leg. Jeff and I have watched this knot for a few months. We've taken him to the doctor and finally, we had an x-ray done. That x-ray told us that it isn't a foreign object but nothing more. Our pediatrician recommended we see a pediatric surgeon to have it removed and put this to rest. For most parents, this would be a minor bump. But, when you're surrounded by kids with tumors every day, your mind goes places it shouldn't. Tomorrow, we take Noah to Hopkins to see the pediatric surgeon and get his take on this knot. Please pray that it's just a build up of fatty tissue or something little and not anything major. For our family, minor is usually major and we need to break the trend here.

Our back story is very long. Jeff and I have three kids and with each child we've been given a miracle. Yes, all children are miracles but our miracles are very unique. Noah was born by emergency c-section in October 2003. I had a very normal pregnancy and when my water broke, I went to the hospital. After being monitored for only 45 minutes, I was rushed to the OR when Noah was delivered in minutes. As I'm laying on the table my doctor says "I've never seen that before." Now that is NOT what you want to hear your doctor say when your stomach is cut open and she's delivering your first born. It seems that I had a condition called velamentous insertion of the umbilical cord and vasa previa. You can look it up if you want but the mortality rate for infants is 75 to 100%. Miracle huh.

Next, Noah had a very large hole in his heart. We had to see a cardiologist up until he was 6 months old when the hole closed on its own. Another miracle. Noah has seen neurologist Ben Carson, he's seen therapist at Hopkins for flattening of his head as an infant, and has an expressive speech delay for which he's seen speech pathologist. It's been an adventure.

And all of this was before we found out we were having twins. At the 20 week sonogram! Shocking. Then, to have one of our twins have cancer and the other to actually beat it before it began. There are no other reported cases of a twin having cancer cells in his body and then to have them go away. Our doctors are amazed and our story has been feature in journals. We know it's a miracle.

Miracles happen every day. We've been blessed to see them and to recognize them for what they are. God certainly has great plans for our boys. Jeff and I on the other hand are living on borrowed time!

Happy 4th!

2009-07-03T07:40:00.005-04:00

The fourth of July is one of my favorite holidays. I think because it comes during the summer, it usually involves picnics and friends and of course fireworks. I hope everyone has a safe and enjoyable holiday.

As for the Czorapinski's, we've been busy. Joshua completed his last scheduled hospital chemo admission last week. This means that unless he were to get a fever, all of his chemo for the next year is outpatient. What a big step. I asked little man and he said "no fevers" so I'm holding him to that. While we were inpatient though, we did have some interesting things going on. Orthopedics seemed to think that they didn't like the position of Joshua's arm in his cast. Okay fine. They wanted to recast his arm so finally at 9:30 at night, they send a resident and a P.A. up. Now usually I don't have a problem with this. This resident on the other hand needs a few more lessons in pediatrics. First, she didn't have the right materials for casting. She decided she could "make it work" and went ahead with the new cast anyway. She then proceeded to cut off his old cast with the saw. Now, would you tell a four year old that your going to use a saw on his arm? Me neither. After continuing to use the word saw and freak Joshua out every time, I finally suggested rather loudly that she use words like "loud machine." Her response, "oh right." Anyway, she recasts only to finish and realize that she really should have had the right materials and that she needs to do it again. That's right with the "saw." AHHHHHHHH.

So, cast #3 is on. Joshua didn't get to pick the color or anything and Miss "Saw" woman brought him the exciting color of white. You know because four year old boys look great in white. That thing is sure to be black by the time we go back on the 17th.

Noah has had a big week as well. This past Saturday, he lost not one but both of his front teeth. On the same night. I told him that the tooth fairy gives double for that and after his usual freak out, he went to bed and I was awoken the next morning to a toothless boy holding $5! I think I'll start pulling my teeth for that kind of cash.

As for Adam, he is such a joy. He and Noah had their six month dental appointment this week and while Noah wasn't too thrilled, Adam would have let the dentist do anything. He was so excited with his new toothbrush.

And finally, our little Lulu got her first haircut. She is just so cute!

Remembering

2009-06-22T15:12:00.005-04:00

On Saturday the twins celebrated their 4th birthday. I can't believe that my babies are now 4 years old and ready to start pre-k in September. I remember the day that I found out I was having twins. I remember that the day before they were born was Father's Day and I was feeling a little funny. I remember going into labor and the delivery of Adam Michael followed by Joshua David. I remember their first cries and how I could feel my heart grow the moment they were born. I remember when Noah walked into my hospital room the next day and how much he aged right before my eyes. I remember how life promised to be an adventure with three boys.

What I don't remember is the time between their birth and now. I don't remember when they first crawled, walked or got their first tooth. I can't tell you how much they weighed at one year or what their favorite foods were. Those memories are lost. If I wasn't so busy caring for a toddler and two infants, I may have had more time to write these things down. I may have been able to organize a little better and remember those things. What I can tell you about my boys is that all of those memories were there for a short while and then stolen by cancer.

They say that cancer takes a lot away from you and it most certainly does. It has taken not only my memories but the precious time to make more memories away. For that reason alone, I hate cancer. I don't remember my twins being able to be twins but I do remember how Adam starred at Joshua for the longest time when we came home from our very first hospital stay. That stay was 28 days and the boys did not get a chance to see each other during that time. It was the beginning of a very rough and long road. A road that we have not yet reached the end of.

But, we'll get there. Jeff and I took the boys this weekend and went to Ocean City. We took them to the movies. We took them golfing and to get ice cream. We let them enjoy being boys and while my nerves were frazzled because of the germ factor, we did it. And we enjoyed being a family. We loved the time together and the making of memories. These memories, I promise not to lose. I've learned how precious they are and how they can be stolen in an instant.

Happy Birthday my sweet baby boys!

When a broken bone isn't just a broken bone

2009-06-16T10:11:00.003-04:00

When you're a cancer kid nothing is simple. A cold can be a serious life threatening event. A paper cut can cause an infection to race through your body, and broken bones don't heal as fast.

When we were told that the cast would have to be on for about 6-8 weeks, I should have known that in the long run it might be longer. After speaking to Joshua's oncologist yesterday, he informed me that the break is most definitely a result of weakened bones from the amount of steroids he's received. Great. We will do another month long round of steroids in July. He was also set to continue as planned with Joshua's admission for chemo today. I pointed out that his arm is still quite swollen and that he is requiring around the clock narcotics to keep him comfortable. After discussing that, we decided that we should hold off on the admission for a week to allow the swelling to go down and for him to be off the oxycodone. The chemo that he will receive requires high amounts of hydration so that he will go to the bathroom a lot and clear out the chemo fast. Oxycodone can cause constipation and extra fluid causes swelling so you can see where the problem arises.

So, we'll delay Joshua's last scheduled chemo admission until Monday. We'll try to get the swelling down in the next day or so and hopefully he won't need the drugs to help keep him comfortable. The twins 4th birthday is Saturday so hopefully we'll be able to pull something off and enjoy a nice quiet family day. But, these are all my plans and as we all know, our family doesn't quite follow the plan.

Thanks to everyone who has called, e-mailed or stopped by to check on our boy! He's not quite 4 yet and he REALLY knows how to milk this for all it worth.

Me: "Boys I need someone to go outside with Lulu for a minute."

Adam: "I'll do it."

Me: "Adam, you're such a good dog owner."

Noah: "I'll go to."

Joshua: "Not me Mommy. I can't be a good dog owner because I have a broken arm."

That wasn't supposed to happen.

2009-06-14T18:51:00.003-04:00

We have participated in Relay for Life for the past three years. In case you aren't aware, relay is an all night event. The idea is that cancer never sleeps and therefore for one night neither do we. The first year, the kids were so little we decided to call it a night early. Last year, a major storm came through the area and relay ended before it really began. This year....

This year we were ready. Jeff and the gang (you know who you are!) built a giant ship. We were making cancer set sail. Our team was full of wonderful friends and family that mean so much to us. Joshua was carried through the survivor lap upon my dad's shoulders. The evening had started and we were ready to relax and enjoy until...

Until Joshua was crawling out of a tent and fell on his arm. My father in law heard the break and if you could have seen his arm, there was no doubt it was broken. Now, I do not usually panic. I know what to do when Joshua has a fever, infection, problems or anything cancer related. Broken bones are not cancer related and I was lost. Where do we go? To Hopkins or the closest hospital. Before I could even get off the phone with Hopkins oncology, the ambulance was on the way.

To make a LOOOOOONNNNNNGGGG story short, Joshua had a severe break to both bones in his left forearm. We spent a very long night at Hopkins after arriving by ambulance. The doctor took an hour to set the arm and he wasn't even able to have it set until about 10 hours after it was broken. He is now home with a bright blue cast. He will have the cast for about 6-8 weeks and we've added yet another doctor to our regime just because we don't have enough. Oncology will let me know tomorrow how we are to proceed with chemotherapy. He was due to be admitted for his last scheduled inpatient chemo on Tuesday.

I just wanted to say thank you to all of our friends and family that donated, supported and came out for Relay. You all are the best and your friendship means the world to us. We would not know what to do without all of you!

Before the fall

After

Helping Others

2009-06-09T21:52:00.003-04:00

I have a whole post about our day and everything that it involved, but I'm too spent to write tonight. I will post tomorrow. Tonight, I wanted to let you all know about an available opportunity to save a life. If you haven't registered for the bone marrow registry, they they are doing their "marrowthon" right now and you can register for free. There is usually a fee that covers all the testing and such but from June 8-22, you can join for free. PLEASE do this. It's a simple mouth swab that they send you in the mail. You follow the directions and mail it back. Unless/until you are found to be a possible match, you will have nothing else to do. You have the power to possibly save a life. Please do this. If Joshua were to relapse again, we would go to this registry to look for a donor. There are so many people out there right now waiting for a match.

Slow moving

2009-06-01T13:42:00.002-04:00

Joshua's counts are finally starting to go up. Just not enough. His ANC has been at 0 for the past few days and finally today we went to 140. Jeff persuaded the doctors to do another draw around 4 pm and if they are above 200 they'll let us go today. If not, we'll have to wait until tomorrow's labs to see where we stand.

Meanwhile, Jeff and I have been switching off and on at the hospital. We've only been able to see each other for about an hour or so. Noah and Adam have been spending time with grandparents and Lulu isn't quite sure where she lives any more. I can't wait to get home and get back on a schedule. Haven't we done our time yet? I swear that after all our family has been through, we need a month long vacation at the end of this. Although we won't be getting a month long vacation, we do have the beach and Disney to look forward to. Now, all we have to do is get there.

My house is a disaster

2009-05-28T15:54:00.003-04:00

For anyone that knows me, you know I like things orderly and neat. Sometimes too neat and God must have known that as he gave me three boys and Jeff. I'm the one who got up every morning in college and made her bed. It irritated my roommates so much that some days they would go into my room and unmake the bed just to get me stirred up. But, over the years I've gotten better about letting things go a little. Yes, I still organize a ton and try to keep things neat but time has gotten slim and the boys are just too much to keep after so things slide. It seems like it's slid a little too much lately though. We're back in the hospital today after another nighttime fever run to the ER. Joshua's counts are beyond low and therefore my plans to get the house in order get pushed further away while the boys plans to destroy it are front and center. I'm hoping that we get out of the hospital by Saturday and I can tackle the clutter all afternoon. It's driving me crazy ;-)

And to add to the chaos that is our lives, we have exciting news. Our family has a new addition. Lulu our 11 week old shih tzu puppy joined us on Sunday. She is such a little sweetie. I would love to add pics right now but I'm on the hospital computer and don't have any with me. I'll post some as soon as I get home because once you see her little face, you're sure to fall in love. The boys are great with her and we are very happy with her. It's been about a year and a half since our last dog disaster and we felt like the boys were finally ready. So far, we've been right. I'll keep you all updated on our little Lulu!

THOSE people

2009-05-14T13:02:00.002-04:00

Before I write the real post for today, I wanted to let everyone know that the National Institute of Health will be at the golf tournament for Joshua on May 31st swabbing for the bone marrow registry. Even if you aren't planning on coming out to golf, please stop by and get on the registry. It's a simple mouth swab and then you are put on the list. ONLY if you are a match for someone out there will you be contacted for further testing. Please be aware that if our little guy were to ever relapse again, we would go to this registry looking for a match as Noah isn't a match and Adam can't be one (see the last paragraph and link for reasons). There are so many children and adults out there looking for a match. YOU could save a life!!!!! Now...

I always refer to our family as "those" people. You know. The ones who's kids are running through the restaurant and causing a scene. Or the "freaks of nature" that we are with the hospital. But today, I have dealt with the other kind of those people.

Today, as I am driving through a parking lot because the store I needed to go into wasn't open yet, I get a beep from behind me. Now mind you, the signs all say 15 mph. I'm going about 15 mph. This woman in her 60's is riding my bumper. She pulls off and parks. I've had it. I've had it with people walking all over me and my family so I stop in the middle of the street. I put down my window and wait for the woman to get out of her car.

Me: "Did I do something to offend you."

Rude Woman: Ignores my question.

Me: Still sitting there and staring at her.

RW: "Well I'm in quite a bit of a hurry and you were driving rather slow."

Me: "Excuse me but you're supposed to go slow in the parking lot lady."

RW: Rolls her eyes.

Me: "Get a life lady. The store isn't even open."

Then, she walks up and trys the door which won't open. NICE!

Me: "So much for your hurry. Haha!"

Yeah, that's what happens when you piss off a women who has dealt with screaming children all morning.

So I'm enjoying my win with the rude lady when I get home and need to call Acer about my computer. Jeff bought we one of those little netbooks for my birthday back in January. The microphone has never worked and now the speakers aren't working well either. I called them two weeks ago after finally getting around to doing it and after all the "uninstall this, do that" they tell me to call back after I clean it off and reprogram it. When that didn't work, I called today only to have them tell me that I didn't call two weeks ago and to do the same thing they told me two weeks ago and call back. That's it.

ME: "You mean to tell me that I need to do exactly what I've already done and then call you back so that you can tell me I never called in the first place and we'll repeat this cycle."

Guy I can't Understand because he barely speaks English: "yes"

ME: I need to speak to your manager."

GICUBHBSE: "He's on another call right now."

Me: "Well I'll wait. I bought this computer over another brand and you won't even fix it. Your company is not high on my list and your company's customer service sucks."

GICUBHBSE: "Hold on."

After waiting on hold for like 3 minutes he comes back to give me service request number, to apologize for what just happened and gives me an address where I can mail my computer. Then I ask him why I have to pay to ship it to them because it's a hardware problem that it still under warranty. Of course I don't get an answer but I'm not finished with Acer yet.

And finally, we really are those people. As I've mentioned before on here, Joshua and Adam's leukemia story is quite unique. The doctors have learned a great deal from our boys blood. So much so, that they recently wrote an abstract that was published in the journal Blood. IF you read it, please know that I only understand it because I live it and even then, it's very technical! Yep, we're THOSE people!

Recovering

2009-05-13T15:51:00.003-04:00

It's been busy for us lately. Joshua has had numerous doctors appointments and with Noah finishing up Pre-K as well as participating in t-ball, there isn't a lot of time left for updating the blog.

First, Joshua had his GFR test last week and thank God the results came back normal. We'll still keep a close eye on his kidney function but at least now we have numbers to back up the fact that they are clearing everything the way they should be. He was supposed to be admitted for more chemo on Tuesday but his platelets were only at 16 so that delays us a week. We'll go back on Friday to see if he's moving in the right direction and then we'll plan for a Monday admission. He's still getting over this bug he's got. Seems that the paraflu that left for about a week has gotten him down again. We've being doing neb treatments and hopefully he'll be able to kick this soon.

And for the biggest news in the Czorapinski household. Joshua is a potty man!!! When we got home last Wednesday, I put him on the potty and we haven't looked back. I guess he just decided to join in. We know you can't make the kid do anything he doesn't want to. When I told him a few weeks ago that you can't go to Disney World unless you go in the potty, he answered "oh well. I guess you'll just have to go without me." Gotta love that kid.

Hope everyone is enjoying the weather. We sure are! I'll be sure to update soon as Noah has his Pre-K graduation next week and I'm sure to have a ton of pictures to post.

Lets kick him while he's down.

2009-05-05T12:04:00.004-04:00

Joshua is finally ready to come home today. His ANC is in the 800's and he's been fever free for over 24 hours. So far, his blood cultures haven't grown anything. This is great. Oh, there's just one small problem. It's Tuesday. Joshua's due his next two chemo doses today. And guess what. Those numbers are good enough for chemo. Great. So before he can come home today, they'll pump him full of two more toxins and then send him on his way. Only for those toxins to tank his counts once again and most likely send us back to the hospital by the weekend. I HATE CANCER!!!!

And just to keep us busy since we have so much free time away from Hopkins, we'll be driving back up tomorrow for his GFR (kidney function) test. Fun times. Summer certainly can't get here quick enough.

Speaking of summer, we got our confirmation yesterday from the Believe in Tomorrow Foundation. We'll be staying in Ocean City from August 16th to the 23rd. We will have a two bedroom, one bath condo that is a short walk to the beach. Thanks to this wonderful organization, we'll be able to have a summer vacation. Then, we will only have about 2 months before we get to go to Disney with Make-A-Wish. Can I just tell you how excited we are for these trips. It's a chance for our family to escape the hold that cancer has on our lives. Of course we can never truly escape as Jeff and I are on pins and needles the entire time and every thought is about germs, fevers, illness and cancer, but we really need a break and these trips just can't come soon enough.

Will it ever end?

2009-05-03T18:55:00.002-04:00

It's been quite a weekend. Joshua was finally discharged on Friday morning. We were told that even though his creatinine levels had come back down, because of how much chemo this kid has had, we are going to go through with a GFR test. Basically, they will inject dye into Joshua's port and then do blood draws over a certain period. This test will give us an answer as to how well his kidneys are functioning. After 3 years of chemo there is a good chance that they have been affected in some way.

So, we get home on Friday only to have Joshua's temperature start to rise by Friday evening. He didn't get to the fever point but he was hovering around 99. For Joshua, that is high because he's usually well below 98.6. Jeff and I watched him like a hawk all night. That watching continued as did the temp until I finally called up to Hopkins on Saturday evening. The doctors felt that since he was still active and playing and he didn't have that 101.4 temp, that we could stay home and see what happened. Did I happen to mention that while we were in on Thursday, Joshua started with a cough once again. This cough has progressed by this point and he is now hoarse as well. So, for the second night in a row, we watched the little man closely. He got really sweaty around 10 pm and stayed cool all night. I thought that his body had finally kicked that temp and we were in the clear. WRONG. First thing this morning, Joshua's temp went to 101.8 and we were on our way to our home away from home. I swear I sleep more on the pull out couch at Hopkins than I do in my own bed.

Well, once Jeff got Joshua to the Hopkins ER, they did yet another chest x-ray and started antibiotics. His blood pressure dipped a little and they added yet a second antibiotic. I will note that his creatitine levels were back to normal today so that is promising on that part. His ANC was 1700 when we were admitted on Tuesday. The chemo he got shouldn't have dropped it much and not by this point anyway, but today his ANC was 240.

So here we are. We're in again with no idea of when we'll get out. I swear I'm sending my next mortgage payment to Johns Hopkins rather than the bank!

Always Something

2009-04-29T12:01:00.002-04:00

Chemo stinks. Cancer stinks. The effects of both really stink. When Joshua was first diagnosed, Jeff and I were given a list of the drugs our child would encounter. Listed along with the names were the side effects. We were told to become familiar with them and then forget most of them. The side effects are awful. They include, hair loss, vomiting, mouth sores, infections and much more. Some of the drugs even list "a new form of cancer" as a side effect. Great. What the papers don't say are the side effects of having three years worth of chemo/antibiotics/drugs can be. They take a huge toll on the body. One thing is that these drugs can effect the kidneys and bladder. Especially the chemo that Joshua got admitted for yesterday. So, when his creatinine levels were elevated yesterday, we had to be admitted for hydration to see if they would come down before we could administer the chemo. The doctors decided to hydrate until midnight and then if the levels were down, we'd go ahead with the chemo. If not, we were looking at a catheter and 24 hour urine analysis. Fun times. So, after a ton of fluids as well as multiple diaper changes, I'm happy to say that the levels went down enough that the doctors felt we could go ahead. Thank goodness. I may have yet a few more gray hairs but we are back on track and the "yellow crap" is now being pumped in. We should be able to get out of here by sometime on Friday.

I also wanted to share our exciting news with you all. This past weekend, we got our confirmed dates for Joshua's Make-A-Wish trip to Disney! We will be traveling to the sunshine state at the beginning of October. We are scheduled for Oct. 10-17th and I don't know who is more excited, the kids or Jeff and I. Be advised that I will be posting more about our excitement as well as the details as the trip gets closer. Just start praying now for "healthy" kids and sunny weather!

The Heat is On

2009-04-27T15:49:00.003-04:00

Oh man what a weekend. With the heat wave we're having right now, it feels more like July rather than April. Saturday we had our second t-ball game of the season. Let's just say that it didn't go quite as well as the first game. Mr. Noah decided to revert to his shy "i'm not going to do it" self. Momma was having none of that so I put the heat on. In front of everyone. From both teams. In a loud, Ami kind of way. Yeah, Mother of the Year right here people. Anyway, after I threaten Noah that I was going to put a diaper on him and make him wear it around, he got his act together and enjoyed the last inning of the game. Smiling from ear to ear and giving his team the thumbs up. I swear, the things I have to do as a parent. Of course, this is the child that when I asked him about his little friends at school having "girlfriends" he just smiles. I asked him if he liked any girls and his answer - "Just you Mommy."

On Sunday, we were up and out the door early for the Port 2 Fort race. Thank you to our family and friends, both old and new, who came out to support this cause. Jeff and I are so grateful for the few of you that are always there to support us. It really means a lot. And we had a great time. There were over 1800 people out to participate. Even in the 90 degree heat, we had a really great day. What was really nice was that to end the day, our wonderful neighbors watched the boys so Jeff and I could enjoy a nice dinner together. What a perfect weekend.

Port2Fort Crew

The seventh inning stretch

2009-04-23T09:44:00.007-04:00

I feel like that is where we are. Joshua seems to have FINALLY gotten past the paraflu, cough, junk of winter. Of course, we're never sure and as I write this he is sure to start coughing again but I'll tempt fate here. He had his spinal on Tuesday and did great. His counts were beautiful and I feel good about going in this Tuesday for more chemo. We do much better with the after when we start with good counts. I feel like we had a few weeks where his counts were too low to continue with chemo and that is what he needed to get himself back into the game.

Speaking of games, this past weekend our Noah had his very first t-ball game. Those of you that have been following this blog know how things went with soccer so we were holding our breath when it came time to go up to bat. Well wouldn't you know that Noah LOVES t-ball. He thinks batting is "awesome" and likes the action. Outfield isn't his favorite position as he tends to sit down and play with the grass but he's out there. Jeff and I are so proud and I'm hoping that this is the beginning of a long baseball career. You know. The kind of career that will turn him into a relief pitcher that makes millions of dollars for only playing a few innings a month. That kind of career. A momma can have high hopes for her kids right?!

The Day OUR World Stopped Turning

2009-04-17T10:17:00.004-04:00

I wrote this post two years ago on the anniversary of Joshua's original diagnosis. Instead of rewriting what I had already written, I'm reposting with a few word changes to make it appropriate for three years later.

April 17th. It’s a day that is forever ingrained into my mind. I remember my kids birthdays, my wedding day and April 17th. Three years ago today my world changed forever. It is a day that no parent wants to face. It was the day we heard the word Leukemia for the first time and for once it referred to us.

I can remember it as if it were yesterday and then again, it seems as though at least 5 years have gone by. I really can’t tell you how long ago it seems yet it has been 3 years. In case you do not know Joshua’s story, sit back and read as I remember April 17, 2006.

It was the weekend of Easter and we had all noticed Joshua and how yellow he seemed to be. It was funny but it seemed as though he was jaundice so I tried to get him out in the sun that weekend. Easter Sunday came and I just had a feeling in my stomach. I couldn’t explain it but I just knew he was sick. If you know anything about our family, you know that the twins had been sick since birth and had so many sinus problems and allergies that we were always at the doctor. This time, it was different. That Easter Sunday night as I went in to check on Joshua in his crib, I came into Jeff and my bedroom and I said. “Something is wrong Jeff. I don’t know what it is but something is really wrong.” I told Jeff that I was making Joshua a doctor’s appointment for Monday because he was sick. I said “It could be something like cancer.” I don’t know why those words came out of my mouth. Call it mother’s intuition, but deep down I think I knew.

Monday morning came and I got the first appointment of the day. Joshua and I even beat our doctor to the office. Once we got into the exam room “Dr. Carol” as the kids like to call her, came in. She asked what was going on and I explained how Joshua was so pale and he had so many unexplainable bruises on his legs. She took one look and said “oh!” Then, she left the room and came back with a nurse to draw blood. Anyway, the minutes ticked by and when she finally came back in she said that Joshua’s blood counts were off and she wanted us to see a hematologist up at Hopkins. She had already called them and they were expecting us in the emergency room. She explained that they thought it might be ITP which is the body’s response to a virus and the platelet level will drop. I knew it was serious and I lost it in the exam room. Dr. Carol let me get myself together as I called Jeff right then and there. I told him to meet me at the house and we would be headed to Hopkins. I tried not to cry but the tears were rolling down my face.

When we finally got to Hopkins Pediatric Emergency Room, it was about 10:30 in the morning. They called us back immediately and stuck Joshua for an IV. It took them three for four tries before they could get one because his veins were so little. Heck, he was so little. He was three days from turning 10 months old. After they got the IV, they drew some blood and tested it. Then, a team of doctors came in and told us they needed to do a bone marrow test. They told us it could be a number of things and being the straightforward people that we are, we asked if it was leukemia. This was the first time anyone had said that word. The doctors said that was a possibility and that they needed the bone marrow test right away.

They came and took Joshua away from us for about 20-30 minutes. Then, it seemed like hours before the doctors came back themselves. The minute the door opened, we had our answer. A team of four doctors came in to the tiny room and we knew it wasn’t good. The doctors told us that we were finding a room for Joshua up on the Pediatric Oncology floor and that he would start treatment immediately. They told us that he had Acute Lympoblastic Leukemia and that it was a treatable and curable disease. They did not go into great detail. That was for the days and hours to come but at that moment the world stopped spinning and fell apart for our family.

From this moment, everything is a blur. I remember crying and then telling Jeff that we had to be strong. I remember thinking of my Dad and how strong he was during his cancer treatments and I knew I had to be that strong for Joshua. I told Jeff we were going to beat this nasty thing and there was no other option. We stayed in the emergency room until 11:30 that night when they finally got a room for Joshua. We then were taken to what would become our life. Joshua spent the next entire month in the hospital. He was not able to see his brothers during that time. Jeff and I were thrown into a world we never wanted to be in. The next day, Joshua was taken into surgery where his first central line was placed in his chest and the first dose of toxic chemicals was pumped into his tiny body on April 19th, his dad’s twenty ninth birthday.

So my friends, that is the VERY short version of what April 17th means to our family. There have been ups and downs and a lot of life lessons. It has been a time of much learning but most of all, it has been a time of healing. God is healing Joshua and with all of your continued prayers, we will be remembering April 17th years from now and smiling because it was the day that God taught us to slow down and enjoy what he has granted us!

As you all know, our story doesn't end there though. Last year on this exact date, Joshua got his port removed from his chest. It was to be the end of this nightmare. Little did we know, we'd have another port placed a little over a month later and begin the battle again.

Back in Business

2009-04-16T15:08:00.002-04:00

Okay, so I know this isn't the most inspiring post. It doesn't include a funny story about Czorapinski life but I'll get back to that next week. Right now, I'm getting back to business and it's exhausting!

We finally escaped from the hospital. Joshua was discharged on Tuesday. One week in the hospital and I'm still trying to get caught up on life. Today, we had to make yet another trip to Hopkins for a count check. All is well and we are scheduled for a spinal tap and chemo on Tuesday followed by another admission the following week.

To everyone who has signed up for the Port 2 Fort. Thanks. I look forward to walking with you and having a great time. There is still time to sign up if you are interested. Just follow the link in my Port 2 Fort post.

And for Relay for Life, we would still love to have more team members. If you've never participated, you don't know what you are missing. It's a blast. Think about coming out for one or both of these events. We greatly appreciate the support.

Missing

2009-04-12T11:21:00.002-04:00

The Easter Bunny visted. I told the boys the Easter Bunny was coming last night. They were excited and yet concerned about Joshua. How would he get his basket? How would he know where Joshua was? I told them the Easter Bunny has a way of knowing and that he finds you. And he sure does. Noah and Adam raced down stairs this morning to find not only their baskets but Joshua's sitting here waiting as well. I took pictures and smiled as they got excited over each egg and surprise. But, I couldn't help but think that something was missing.

Joshua is still in the hospital. Looks like it will be at least another day or two before he can come home. But, that's the point. He'll be coming home. This Easter, as my family is split apart and incomplete, I have the comfort of knowing that it is only temporary. I can't help but think of all the families that will forever feel as if something is missing from their holidays. I thank God that Joshua, while he isn't at home, is here. He's recovering and we'll make up for him being away from home next Easter. Happy Easter everyone. Hug your kids a little tighter today and remember the true meaning of Easter. And if you could, please say a little prayer for all of those families that are "missing" someone today.

Still Here

2009-04-10T07:11:00.004-04:00

**Edited this post because I forgot to add that Joshua has tested positive for para influenza type 3. Basically he has the flu and it can cause respiratory infections and problems so that could be why he has the pneumonia/bronchitis/whatevertheywhattocallit. Looks like we'll be in for the weekend.**

We're still in the hospital. Joshua temperature is still going up and down. The doctors have added yet a third antibiotic so hopefully this will help with whatever he's got going on. Last night he had a weird rash that started on his legs and eventually he had it all over his back and arms as well. The doctors seem to think it's some virus but we'll see. Some benedryl seems to have helped but his face is still red. They are going to culture his next three stools to make sure there is no blood in them. I'm praying that today we see some improvement. The chemo that he got last week is rough and he's at risk of getting infections and bacteria after it takes effect. I hope that his body is able to kick whatever it has going on and that we can get home soon.

We're In

2009-04-08T12:41:00.003-04:00

Back to Hotel Hopkins. Yesterday was long. Joshua had a clinic appointment for a count check yesterday around 10. His ANC was a big whopping 0 which was expected. He did need "platelips" as Noah would say, so he received a transfusion of those. Meanwhile, I noticed that Joshua was feeling a little warm. He wasn't feverish but I knew that was were we were headed at some point. So, after we finish and make the drive back to the eastern shore, Joshua's temp starts to rise. I had talked to the doctor about his last chest x-ray and it saying he had "resolving viral pneumonia." We decided that since he still sounded yucky we should start an antibiotic. While I go to the pharmacy to get that filled, his temp continues to hover around that magic number. So, for the next hour or two, I just watch his temp closely. Then around 7 pm, his temp hit 101.7 and away we went.

After spending all night in the ER, we finally got a room around 10:30 this morning. Joshua's temp has been fluctuating but is down right now. They are giving him two antibiotics and we are awaiting results from his most recent chest x-ray. (how many of these before they are bad?) So back to Hotel Hopkins to enjoy the fine cuisine and amenities. You can sense the sarcasm there right? My guess is that we'll be here until at least Saturday. We have to wait until his ANC is at least 250and he is fever free for 24 hours. It really stinks but we're where he needs to be right now. This is all part of the treatment and with his counts dropping at least we know that the chemo is working.

Now, on to more of a fun topic. The golf tournament for Joshua is coming along nicely. Thank you so much to John for organizing this and thank you to everyone who is involved in some way or another. They are going to have a silent auction included and John has started the bidding on some faboulous items. Here is an e-mail that John sent to me. These are the items up for bid right now:

1) A professionally guided Eastern Shore Goose Hunt for 4.
Donated by R&R Guide Service. Thank you Pat Reber...one the best and hardest working guides on the Eastern Shore.
You will be taken to a pristine hunting location...all you have to do is actually hit your target :) Your license and required stamps are you responsibility.
The value for this trip is $500.
Minimum bid will be $175...increasing in $20 increments

2) Washington Capitals- An autographed hockey stick from the NHL's best player Alex Ovechkin.
This stick is game used!!!
Minimum bid is $100...increasing in $20 increments
Present bid is $120 CHF
Thank you Joey for all the Capitals items

3) Washington Capitals Autographed hockey pucks by -
#19 Nicklas Backstrom.... Present bid is $50 CHF
#19 Nicklas Backstrom....Present bid is $50 CHF
#52 Mike Green(This puck is still pending)....Present bid is $50 CHF
Coach Bruce Bourdeau....Present bid is $50 CHF
28 Alexander Semin....Present bid is $50 CHF
The Great Olaf Kolzig(Ollie the goalie)....Present bid is $50 CHF
Each puck will come in a trophy case.
Minimum bid will be $40...increasing in $10 increments
*** There is the possibility we wil have an Ovechkin puck very soon***

4) Two Club Level Seats with parking pass to a divisional Redskins Game or other game of your choice outside the division.
Schedule is not out at this point.
The value of this is $560.00.
Minimum bid will be $200...increasing in $20 increments

5) Two tickets for a Ravens Game( game TBD ).
Minimum bid will be $150...increasing in $20 increments.

6) Two night stay in a 2br condo at the one and only Barefoot Resort and Golf in North Myrtle Beach, SC
There are no restrictions...based upon availabilty.
Thank you to the one and only Barbie from Beach Vacations.
Minimum bis is $100...increasing in $20 increments
Present bid is $120

7) 4 Tickets to A non-conference Maryland Men's basketball game w/parking pass.
The value for this is $100.00
Minimum bid is $50....increasing in $10 increments.

Other items may be added periodically.

Please send all bids to me via email(johnmaddy@atlanticbb.net) or Facebook. I will update where the bids stand everyday on my Facebook and MySpace sites and
via email for those who request to be updated. Please call with any questions- 240-286-2174
I will also email those who have bid on items to let them know if things have changed.
I will cutoff online bidding one week before the tournament at which point I will ask the highest bidder for their cut off point or
a phone number they can be reached the day of the golf outing.
The items will be offered at the golf tournament

Port2Fort

2009-04-06T13:05:00.002-04:00

Just wanted to post a quick message about what we are up to. The Believe in Tomorrow Foundation is an organization that provides numerous things to families going through this cancer ordeal. They have given our family tickets to Disney on Ice as well as the Zoo. This summer, we will travel to Ocean City to stay at one of their houses free of charge. Well, now it's time for us to give back.

On April 26th, "Joshua's Journey" will participate in the Port2Fort race. It's a walk/run 6K and we would love to have all of you join us. There is no obligation to go out and raise money although that is greatly appreciated. We would just love for you to spend the $20 to register and then come out and join us for a fun filled day. The race starts at 9 am and is followed by a post race party. Bring a wagon or stroller and bring the kids along. Can't make it to the event? Then consider sponsoring us through the link at the left or got to http://www.firstgiving.com/believeintomorrow

If you do plan to register, let me know and we will get t-shirts made up that say "Joshua's Journey - Because kids get cancer too!" and we'll all show our support for our little guy. Thanks again to everyone for all of your love and support!

Info, Details and a Funny

2009-03-31T14:04:00.005-04:00

I have so much to talk about in this post, it's going to be a jumbled up mess of info, details and stuff. First I'll start with the info and details. So we finally made it. Well, not actually but we are in the hospital and receiving chemo. You see, even though Joshua's ANC was only at 660 (needs to be 750), we decided to go ahead with treatment. It also seems like Joshua is starting to recover from pneumonia so that may have been the reason his body has been so slow to recover from this last round of chemo. Whatever the case, we forge ahead.

Next, if you are interested in helping out with a great cause, then think about joining us for a golf tournament in Joshua's honor. The tournament will be held on May 31st in Queenstown. Our neighbor John hosts this event for us and it's a ton of fun. We are ever so grateful for all the friends and strangers that come out to support our family. It's completely humbling and we appreciate every effort. Every dime that is raised helps us to cover the costs associated with Joshua's treatment and we can't thank John and everyone involved enough.

Now on to the stuff. I'm going to start with our Noah. We are so proud of him. Yesterday, I had his first parent/teacher conference. This is where it all starts. Pre-K conferences. I go in and am prepared to talk about how Jeff and I are concerned about Noah. We have been thinking that he just isn't picking up on the academics of school. Okay people. We know it's only pre-k but we've noticed that Noah doesn't seem to be able to recall letters or numbers when they are shown to him. Well, to my surprise, his teacher says that he is doing great. She showed me some of his handwriting and I was so impressed. He's copying letters from the board and writing words. He's doing things that I had no idea he was even able to do. That little stinker has been holding out on us and making us worry for months. The one thing his teacher said that he won't participate in is dancing or music which cracks us up because it's one of his favorite things to do at home. And to continue with his make Mommy and Daddy proud moments, he tested for and received his next karate belt yesterday. We have ourselves a karate kid!

Adam. What can I say about this kid except that he is a hoot. Adam is little me. He is an OCD perfectionist with an attitude. Ask him what his name is and he'll promptly tell you. "I'm Adam. A-D-A-M, Adam." He is so excited to turn 4 as he knows that is when life starts for him. We keep telling him that "when you turn 4 you can..." So to turn 4 means he can go to school, try karate, play sports and so on.

Joshua on the other hand could care less. We've told him that there are no diapers for 4 year olds so he's not as excited about turning 4. We haven't really pushed the potty training thing because of the amount of fluid he gets while in the hospital. Joshua is also the kids that doesn't care if he's walking around in a wet or dirty diaper. Jeff says we're going to just have to let him run around naked and then he'll get the idea. Back to the fact that I'm an OCD perfectionist, and this becomes a hard pill for me to swallow. But, there's always grandparents and I'm planning to ship this one off this summer for a week of potty training boot camp with Nonna. Hey, I did two out of three right?

Jeff and I were able to escape for an evening alone this past weekend. Remember that I said we won an overnight stay at the hotel were Noah's school's spring gala was being held. We were really sweating that we wouldn't have the chance to use it because of Joshua's chemo schedule. Anyway, we were able to go and have a great time. They boys were loving life at Bud and Bebe's house. It was "the best sleepover ever." Jeff and I were loving life at the Holiday Inn Express were they guarantee no kids in the bed and a full nights sleep. For those of you with kids who are constantly climbing into bed with you, I highly recommend you book a night soon. We were able to enjoy the gala, have some fun with friends and get a good nights sleep. All were completely overdue and much needed.

And finally, our Czorapinski funny of the week. This past week, we're sitting at dinner. Joshua and Noah were really playing around at the table.

Me: Boys. That's enough sit down and eat your dinner.

They continue.

Me: Boys. I said sit down before someone gets hurt.

Noah: We know. We know. Joshua has no plate lips!

Out of the mouths of babes!!

Wanna get away?

2009-03-24T10:26:00.002-04:00

Every time I see that Southwest Airlines commercial I want to yell really loudly "YES." The stress of having three boys (let alone the fact that one has cancer) makes me want to get away at least once a day. I swear the next time I see that commercial, I may just have to go grab one of Jeff's guns and shoot the television!

But, while I'm stuck here, I'm dealing with Joshua whose counts are still in the dumps. His ANC and platelet levels did not rise by Friday. They actually fell even lower but of course not enough to infuse. That leaves us trying to keep an active three year old with two as equally active brothers from bumping or bruising himself. Yeah right. Try that one. So, we'll try to take Joshua tomorrow for a three day chemo admission. I'm not sure if he'll make counts but I sure hope so. With every week we're delayed it gets harder to plan a summer for the family. We would like to send Noah to some day camps and possibly try swim lessons. I would like to take the kids to the beach as well. Once we hit maintenance, it becomes a tad bit easier to plan. So lets pray for good counts so that we can get this phase of life behind us.

And for you're amusement, here's your dose of Czorapinski life. This past weekend, I tried to go get professional pictures of the boys once again. You all know about the whole Christmas disaster. Well, just wait.We go to JCPenney once again. Joshua has decided that he will smile this time and make me proud. I do have to state that I told him the Easter Bunny wouldn't know he lived here if I didn't have a smiling picture for the wall. With Joshua, food/candy works every time. So we're prepared. We walk in and Joshua walks right back for photos. Finally, I will have my first group shot of the boys since the twins were 6 months old. Then it happens. Adam has a meltdown. My dreams float right out the window. No picture of Adam and no group shot. I just can't win. I sometimes think that God is sitting up above and using me for some sort of entertainment.

Delays

2009-03-19T08:59:00.003-04:00

No hospital for us this week. Once again, Joshua didn't make counts and therefore is delayed yet another week. While we had originally though he would enter into maintenance around June, it is now looking like somewhere late summer to early fall. It really stinks. Right now I'm just counting down time to maintenance. Don't get me wrong, it's not like maintenance carries any less worry or any escape from hospital stays for fever, but it does mean lighter chemo at a daily, weekly and monthly rate. It still stinks but just has a more tolerable smell.

So now, we wait. We'll go back on Friday to check counts and see if he needs blood or platelets. If all is well, we'll plan for a Monday admission. Of course this does put us in serious jeopardy of missing our free overnight stay at the Spring Gala next weekend. Jeff and I are hoping not but now even if we do get a chance to stay at a hotel only 5 minutes away, we'll be sweating all night worrying that Joshua will get a fever and we'll have to head to Baltimore.

Delays. I guess we should be happy that Joshua made it this far without too many delays. It's just that I feel our whole life has been delayed. I think about how Adam and Joshua will be 4 in June and I can't remember much about these past four years except for hospital stays and chemo. There is just so much out there that I want to be able to do. I want to travel with the boys and not have to worry about a chemo schedule, counts or fevers. I want to be able to let Joshua go to school and not be terrified about what he will pick up. Heck, I want to potty train the kid and not have to keep putting it off because of him being hooked up to massive amounts of fluid to flush out the chemo from his body. I want all of this so bad that I can taste it. But, it's delayed. One day we'll get there. It just won't be today.

The Winter that Just Won't Quit!

2009-03-16T17:16:00.002-04:00

I haven't updated the blog in a while. Well, we've been busy as usual. And as usual that busy involves numerous trips to the doctor for all three kids. Today is was Adams turn. Last week, it was Noah. Wednesday, we'll be in the hospital with Joshua for more chemo. See a pattern here. Noah is recovering from a nasty cough that involved neb treatments, antibiotic and steriods and Adam has just started an antibiotic for a sinus infection. Joshua has had a runny nose since June. Thank God Jeff and I are usually healthy. Between co pays and doctor bills, we'd be in the poor house if Jeff and I needed medical attention. Of course I say that as I visited the dentist on Friday and had a $350 co pay for a crown. Ouch from the cost and not the dental work! ;-)

Anyway, we're here and surviving. J-man is doing well overall. He didn't make counts two weeks ago and therefore missed a week of chemo. We resumed last week even though his platelets were only at 73 and needed to be at 75. I'm praying he makes counts this week and we can keep forging ahead as scheduled. Right now, it looks like it will be June/July before we hit maintenance. Come on summer!

We have been able to enjoy some time with the boys. This past weekend, we made a quick day trip to OC for some Thrashers fries and Fisher's popcorn. Well actually Jeff and I made the trip to the boardwalk with Joshua and Jeff's mom tagging along. Joshua thought he might miss out on some food and while the other two decided to stay at Jeff's parents beach house with their Bud, Joshua had his shoes and coat on the minute he heard popcorn. But, it was a relaxing day and we enjoyed the family time with the boys. We hope that this summer brings a few more family trips and a lot less stress. Joshua will still be in treatment but we'll work around that minor problem.

So over this cancer stuff

2009-03-04T10:54:00.002-05:00

This cancer stuff is getting old. The longer you're at it, the less chance your child has of actually making counts to keep going. We've been very fortunate that Joshua has for the most part, strolled through treatment. Yeah, we've had hospital stays, scares and setbacks, but they they have been few. Now, it seems that we have to fight each week, to make counts and continue with treatment. Yesterday, Joshua was due to have two different chemo drugs given as an outpatient. Of course, I have no thoughts that he wouldn't make counts. Those thoughts were for next week after he got this chemo. Wrong. ANC was 420. We need 750. No chemo and another week delay. Stinks, but we know that it is just his little body telling us it needs longer to bounce back. I write this as he is bouncing across the kitchen "playing hopscotch."

So while we wait, we'll keep up with the other things going on in our lives. Jeff and I have done a little kitchen remodel which involved relaminating the counter tops. Huge job and I'm happy to say that we were able to do it without killing one another. Big accomplishment. Noah is still enjoying karate and should be starting T-ball soon. Let's hope that he likes that as much as karate. Adam is growing like a weed and getting way to smart. He is really excited to start school in the fall and I think that he will really take off once that happens. Can you believe the twins will be 4 in June? The boys are coming up with new things everyday to keep us on our toes. Last week, we're sitting at the dinner table when Noah asks us "Why did the chicken cross the playground?" He usually doesn't quite get the punch line of jokes that he has heard so I'm waiting to hear what he comes up with when I ask "why?" "To get to the other slide." Funny kid. And Joshua decides to recite "she sells seashells by the seashore" out of the blue to me the other day and can say it much better than I.

And in other news, a friend of ours is putting on a golf tournament to benefit Joshua's medical fund. He will be holding the tournament at Queenstown on June 7th. If anyone is interested in playing, let me know.

The Face of an Angel

2009-02-26T13:45:00.003-05:00

Heaven gained the face of a beautiful child yesterday. Henry Scheck earned his angel wings yesterday morning after a battle with Medulloblastoma . Our family had the honor of meeting Henry when both he and Joshua were receiving radiation this past summer. He loved to watch Curious George while he was awaiting his turn for radiation. Once he woke up from the anesthesia, his dad Bryan would have a pop tart ready to eat. Henry was a true hero and was loved by so many. I ask that you please keep his parents and his two sisters in your prayers as they learn to live life without their precious Henry.

The book I'm going to write

2009-02-24T10:54:00.002-05:00

I plan to write a book one day. I'm not sure if it will ever be published, stay a fantasy or come to life on some bookstore shelf, but there's a book here people. As a child, I wanted to write children's books. I still love to read stories to the kids and how hard can it be to write a 10 to 20 page book right? You know, Mr. Wizzle goes to School or My Mommy is a Monster. Great book titles don't you think?

But times are different for me know. Life isn't as easy or relaxed as I had planned it. My plan was to have perfect kids and a stress free, margarita filled, warm weather, relaxed life. Reality is WAY more stressed and let's just say it's been a while since I had a margarita, and the kids... My new book ideas aren't the fun and carefree creatures I pictured as a child. My new book ideas involve telling a story of a life bombed by cancer. A story of balancing life when life is so out of balance. But who am I kidding. Me write a book about something serious. I'm not that kind of person. I learned to write in a journalistic style so I can't draw things out for the drama. I'm a "get the facts on the paper" person thanks to many journalism and PR classes. My 20 page senior term paper in high school only got a 98% because I was 2 pages short. So a whole book on a serious subject. Funny.

But I had a brainstorm of an idea the other day and I just know that my idea is good. It's the kind of book that would make me grab it in the store and think "I want to read that." Would anyone else? I'm not so sure, but I sure would. When times are stressful, and this cancer thing has us down, we laugh. I have laughed at things that people on the outside world (outside of cancer that is) would think was sick. I've laughed at jokes about radiation to Joshua's testicles (see I told you sick). I've laughed at my kid as his hair grows back from chemo and he looks like a drowned rat. It's how WE get through this ordeal. It's not pretty but the humor in the situation is what WE choose to see and how WE deal. So what do you think my new book would be called? What am I going to write about the life of a family dealing with childhood cancer?

How about "My Cancer Kid Needs a Diet."

We just can't win. Or can we?

2009-02-18T14:34:00.002-05:00

Strep has hit the house. All of Noah's friends at school have had it so it was only a matter of time. Noah tested positive and as a precaution, the doctor put Adam on an antibiotic as well. We love her. Joshua's doctors up at Hopkins on the other hand wouldn't treat him unless he was positive. The doctor we saw in clinic yesterday decided that his throat looked fine so there was no need for a strep test. After talking it over with Jeff, we felt as if we should be proactive with this so we contacted his fellow. She wouldn't treat unless we had a strep test done and she wanted me to take him to the pediatrician's office. Good. We'll expose him to flu, strep or whatever else is sitting in the waiting room. Sounds smart to me. I wrote back to her making sure she wanted me to do that and since she didn't get back to me until after the office was closed, I was stuck taking Joshua to the Nighttime Pediatrics place. I pull up and there is no one there. Yeah, I can do this without freaking out. Well in the time we are sitting there 5 people that are all coughing and hacking come in and sit down. I am having a germ freak out at this point. We finally get taken back and I tell our story to the doctor who does a rapid strep test. Of course it comes back negative. Great. Great because he doesn't have it but great because now his doctor won't let us treat as a precaution.

In the meantime, Jeff has called Joshua's attending. We have decided we need to go straight to the top with all of the mess that has been going on with Joshua's treatment. Today, the attending finally got back to me and he has decided that he is in agreement with us and would like to treat him until he goes into the hospital for chemo on Monday. His comment was that we "need to prevent a fever and even more a delay in chemo so that we can finish this and get on with our lives." Amen to that.

So here I am thinking that we just can't seem to win. We have to fight for everything and then when we do get something to go right, I'm left wondering what's next. That's when I got the phone call.

Noah's school has been holding some raffles for it's upcoming Spring Gala. One of the raffles was for an overnight stay at the hotel where the Gala will be held on the night of the Gala. Guess who won! Yep. Us. WE SO NEED IT. I call Jeff and tell him. At first he doesn't believe me and then he asks the question that I'm already thinking of. "Where does that fall with Joshua's schedule?" By my calculations it could be a high chance of fever time. Ahhh. We'll just have to wait and see.

Friday the 13th came a day early

2009-02-13T11:24:00.002-05:00

Wow what a day. I just don't even know how to tell you about the frustration, anger and yet laughable day we had yesterday. Mostly, it was a bad day for Jeff. I really felt bad for him as he just couldn't seem to get anything right. Let me start by saying that we recently ordered three new cabinets for our kitchen. We also borrowed my Dad's truck in order to pick up this cabinets.

So here it goes. A flashback of the day.

8 am - Jeff's on his way to work in my Dad's truck as he plans to pick up the cabinets on his way home from work. He realizes he has forgotten his badge.

8:30 am - Jeff calls to see when I'm leaving with Joshua to head to Hopkins. He decides he's going to just go pick up the cabinets and bring them home before work so that he can get his badge.

9:15 am - Somewhere in the 40 feet across the parking lot and into the lumber store, Jeff loses the keys to the truck. He searches. They are NO where to be found.

9:40 am - I arrive at the store on the way to Hopkins to help Jeff look. Can't find them. They have just disappeared.

10:00 am - Jeff has to call his Dad who is at our house with Adam and get him to come pick him up so that he can come home and grab his truck. Then he has to drive another half hour to my Dad's shop in order to pick up another set of key.

11:15 am - Jeff heads up to my parents for the extra set of keys.

11:45 am - Jeff turns on the road to my Dad's shop and realizes his truck is sluggish. Code for he's out of gas.

12:00 pm - Jeff coasts into the shop. Luckily Dad has gas tanks right there. He has to beg the secretary for gas.

12:30 pm - Jeff's on his way back home.

1:00 pm - Jeff arrives home. He realizes that my van has to go in to the shop today and needs to be dropped off at some point. In order to save a trip (haha) he drives the van to Annapolis and then his Dad picks him up to take him back to my Dad's truck.

2:00 pm - Jeff has finally started the truck and is now headed back home as he has decided he needs to come home before something really bad happens.

So poor Jeff. Hopefully he had fulfilled his bad day quota for a while. Meanwhile, I'm up at Hopkins where the doctors tell me Joshua is due for chemo next week. By my calculations, he's not due until the week after. I finally come home and look back in my notes as well as contact his actual doctor and yes, I'm right. Great. If I weren't on top of things, the "best hospital" would have made a mistake and treated my child too early.

In the end, these are small matters. Okay so maybe not the hospital making yet another mistake, but the truck issue and the bad day are all laughable issues. If cancer has taught us anything, it's taught us to take things with a grain of salt and to keep pushing forward. So today, Jeff was up and off to work. And believe me, he had a badge and I think some super glue for those keys!

Getting up just to be knocked down again.

2009-02-10T13:53:00.002-05:00

We made it home on Thursday after being in the hospital for a cold. Yes, the doctors seemed to think that he "may" have pneumonia. The chest x-ray was once again clear and yet we were in the hospital from Monday to Thursday. Sucked. Then, we got home for a little over 24 hours when wouldn't you know it, Joshua started with a fever. Yep. Sucked even more. So back to the hospital on Friday evening. Things seemed to be improving and by Sunday, Joshua actually had an ANC in the 340's. If he didn't get a fever all day the doctors were going to let him go home. Great. The day was going well until around 6 when his temp spiked yet again. More suckage. Monday comes along and I prepare to trade off with Jeff at the hospital. I pack a bag and lug it through the hospital. That's when I find out that Joshua has an ANC of 1800 and since his fever came down and he was fever free we could go home. Of course we had to stay all day to hear that his 4th chest x-ray was once again clear. Surprise! Okay so the being able to come home and the clear x-ray didn't suck but the lugging of the bag really did.

So we're home. Hopefully until the 24th when he's scheduled to go back for 4 days worth of chemo. It would be nice to have my family all in one place. It would be nice to eat good food rather than the junk at the hospital. It would be nice to actually feel like I have a husband rather than someone I share babysitting duties with. At least for two weeks. Is that too much to ask?

AHHHHHHHH

2009-02-04T16:58:00.003-05:00

I feel better. I just needed to get that out. This week has been a disaster to say the least. On Monday, I called up to Hopkins because Joshua was pale and had lots of bruises on his legs. I just knew that his platelet and blood counts were low so they told me to bring him in. We get in and labs are drawn. Sure enough, his levels are very low but not at that dangerous he needs an infusion level. It was only the dangerous don't let him fall down or bump anything level. Yeah. Like that is going to work for a three year old with brothers. I live in a constant three ring circus people. Ain't nothing I do gonna stop them from fighting/hitting/running/jumping/being boys. So here I think we've come up to Baltimore for nothing. Wrong.

The doctors decided that the cough that he has had for the past few weeks is now something to worry about. Never mind that it doesn't sound any different to me or the fact that two chest x-rays last week were clear. They wanted another one and since our insurance won't do an x-ray at Hopkins without a pre-auth unless he's inpatient, they decided to bring him in. Once we moved over from the clinic to the hospital, the doctor here says that he doesn't see a difference from last week and wouldn't have put him in the hospital. Great. But since they already started his antibiotic and his ANC is at 0, we have to stay. Even better.

So here we are. Day three. No fevers, Joshua's not hooked up to any machines and we're bored out of our minds. The latest x-ray is clear and his blood cultures are fine. Yet the doctors say we have to stay. Makes a ton of sense to me. I was able to talk them into discontinuing the antibiotic for 24 hours and if he doesn't get a fever they will send us home. I'm the bargaining mama!

And on the home front, Adam has a cold. Noah is going through his emotional "my family isn't all home" stuff and Jeff got a parking ticket today. Thank goodness Jeff's parents have been able to keep Noah and Adam in line while we're stuck here. I think they have gotten a work out over the past few days though. I know the boys have been exhausted.

I'm just tired of all this stuff. If I haven't mentioned it before, cancer sucks. I can't wait for the day that our lives are controlled by this disease. It has stolen so much time, energy, and life from us and so many others. It amazes me how other moms can call out the date that their child took their first steps or got their first tooth. I on the other hand can't remember any of that. I do remember the exact day Joshua was diagnosed or the day he relapsed. I can't shout out weights and heights but I can give you hemoglobin and ANC numbers. This cancer world is so different, so isolated from the outside and so controlling. I'm aiming for the day that I have no idea what my kids ANC is but I do know how tall they are or what they weigh. I guess by then, I'll have no idea where they are past curfew and that will be a whole new set of worries!

Normal chaos

2009-01-29T14:44:00.002-05:00

Joshua is home! He is finished yet another round of chemo. I wish I could say without trouble but as you all saw in the previous post, that wasn't the case. The good news is that he is now home. The chaos of our "normal" is back and I am enjoying every minute of it. The boys were all happy to see each other and have been playing together for the past few hours. I am sure the fighting will start soon but I am happy to report that the worries of the other night are past us for now. Joshua's counts are low and are sure to drop lower. We have been having to do eye drops which aren't fun but he's a real trooper in holding still while I put them it. That kid is just amazing. Now, we have to start the shot in the legs each night for the next two weeks or so. Hopefully, with the low counts, we can escape the fever that usually comes and stay out of the hospital until his next dose of chemo at the end of February.

A few more gray hairs

2009-01-28T06:02:00.003-05:00

It's been quite a night. First, let me start off by saying that Joshua has not made blood counts for the past two weeks. The chemo is finally catching up to him and his little body needed a rest. He managed to make counts on Monday and we checked into Hotel Hopkins for three days of chemo. His blood antibodies were also on the low side so we had to give him some of them. That's where the trouble started.

Overnight last night and into this morning, and in between doses of chemo, Joshua was given the IVIG. It was infused over a few hours and just as the last drops were going in, he woke up with rapid breathing, low blood pressure, seemed to be in pain and a few other symptoms. His nurse came in and she immediately called the doctor. Then, they called other doctors and finally pushed the red button on the wall that you never push unless it's an emergency. We had about 15 people in the room and everyone was crowed around Joshua. Finally after flushing out the IVIG, giving some Benedryl and Tylenol, he seems to be doing better. His heart rate is still a little high but improving. He is still going to get his last dose of Ara-C and that makes me nervous. The Ara-C is the chemo that can cause fevers and he has had one since we started it on Monday. With this most recent episode, it got up to 103.3. I just want to get this last bit of chemo in and go home where things can return to our "normal."

So, that's a quick update. Please keep our little guy in your prayers that his body can handle the effects of the chemo and he can keep those fevers down. Oh, and maybe a little prayer for his parents to be able to withstand all the stress!

When it rains, it pours little foam beads

2009-01-14T10:01:00.003-05:00

We have just been so busy. Joshua's chemo schedule is into a really rough part. He is in the hospital for a few days every two to three weeks. We go up to clinic for chemo every week and his blood and platelet counts have been really low so we're making unscheduled trips as well. After Adam decided to give Joshua a bop in the nose on Sunday, we headed to the hospital on Monday for some platelets and blood. The donor that Joshua got the platelets from wasn't the best of matches and for some reason, his body didn't accept all of them so his levels didn't go up to where we would like them. Jeff and I have been on bruise watch for the past few days. Try tell two three year olds and a five year not to wrestle. They're boys. It is their nature. Trying to get them to sit still and "play nice" is like trying to tell a bird not to fly. Doesn't work unless you break a leg or something and then well, we're back to that whole low on platelets thing.

So, besides the hospital and keeping the boys in line, there isn't much else going on. Well unless you count work for Jeff, trying to refinance the house, selling Yankee Candles for Relay for Life (if anyone is interested, see a team member), and trying to escape for an evening or two. As I said, we're busy.

I was able to escape last week for a day though. Thanks to my mom, I had a day to myself. For the first time in my life I went to a movie alone. It was the best movie I've ever seen. No, Bride Wars wasn't the best written, directed or acted movie. It was the fact that I went, sat, ate and had no one to bother me. If you've never went to a movie alone, try it. You'll enjoy every minute. At least I did. And the best part was that after the movie, Jeff met me and we went to dinner at the Chart House. That is one of my favorite restaurants in Annapolis. We usually only go on my birthday and our anniversary and since my birthday is this Friday, we decided it was close enough and enjoyed a wonderful dinner there.

But, as nice as my alone time was or the dinner with Jeff, it all must come to a end sometime. After a long day on Monday where we were stuck at Hopkins all day for blood and platelets, I finally walk through the door at about 6:30 completely exhausted. The boys had been playing and Adam, who is my little explorer, had decided to unzip the cover of his brand new bean bag. Inside is an insert that also has a zipper and that insert is filled with the little beans. Well, he didn't unzip the liner but in true Ami tradition, we got a defective liner. One part wasn't stitched correctly and you guessed right. Beans everywhere. Now if you have ever had a bean bag, you know all about how those little beans stick to everything. They are a complete mess. So here I am with Jeff's shop vac trying to suck up beans that are sticking to me, the floor, the vac and everything in between. It was anything but fun. So after a stern e-mail to Land of Nod, I am happy to report that we are getting a new insert with no questions asked.

And finally, some normal news from the Czorapinski's. Noah lost his second tooth this week. This time, he didn't throw it away. We're making progress!~

Reasons why 2008 did not suck for us...

2008-12-31T13:26:00.003-05:00

In response to a post on Hope4Peyton , I am posting my own list of reasons why 2008 did not suck for the Czorapinski Family. Here it goes and believe me, I have to dig deep for the "brightness" in some of these.

1. Joshua has made it through 30 weeks of chemo on time without any set backs. The child is such a trooper. (I will not mention that 2008 sucks because he relapsed. That isn't what this post is about.)

2. Jeff and I went on our first alone vacation in 5 years. We took a 36 hour trip to Orlando back in February. Don't know if that would be considered a vacation but boy did we enjoy it.

3. We got to see what live without chemo might be like. Joshua was chemo free for two whole months.

4. Adam joined the potty club in August.

5. Noah fought through his social phobia to become a "karate kid!" He also participated in his school Christmas program. This is a big step for us people.

6. Even though we are in the middle of harsh chemo treatments with Joshua, we were able to take the family to the beach for two days. The boys loved it and we were able to capture a few lifelong memories.

7. Friends. We have met and become friends with some amazing people. Every time I hear that song "You find out who your friends are" I think of you all, and you know who you are.

8. Relay for Life. We were able to raise over $2500 with the help of our friends and family. And boy did we have a great time doing it too! (Thanks to those of you who have signed up for Relay 2009. I'll be in touch!)

9. Bonding. Being stuck at home all the time really drives you nuts. But, it has also bonded our family. I don't think if it were for cancer we would spend so much time together. The twins would be in school and we would be out and about much more often. So, 2008 may have made a very stressed and crazy mommy, but it has helped us learn to enjoy those little moments.

10. Your turn. Think about what meant the most to you in 2008. I'd love to hear your list!

Can we just skip 2009?

2008-12-30T17:28:00.003-05:00

I feel like I am constantly wishing my life away. I am always looking forward to the end of chemo and moving on to the next chapter. Don't get me wrong, I do savor every moment with the boys. Every day is a blessing but it will be such a different world without cancer being an every day part of it. Jeff and I have to get a sitter for the simple things. We can't through the kids in the car on a Saturday and hit Sam's Club. We don't dare plan vacations or even nights out. And this has been our way of life for so long now that I have no idea how we will act when life isn't this way. So as we move from 2008, the year that Joshua was chemo free for two months and move into 2009, the year of the unknown, we will start it with what we know. We will be in the hospital where Joshua will be receiving yet another dose of high dose methatrexate. But we are doing well and we are looking forward to getting yet another week of treatment moved over to the done column.

I know I haven't been great at posting on the Czorapinski Family events. It's been a crazy time with Joshua's hospital stays, the holidays, the boys being sick and such. Noah and Adam were both on steroids and antibiotics for yucky coughs this past week. Christmas came and we were swamped with toys, toys and more toys. Santa had a momentary lapse of judgement and left each of the boys a guitar and saxophone that play music. To his defense, they do have volume switches but we still think he lost his mind for a minute there. The boys love them and have had a blast playing "rock star." Thanks to Jeff's parents they now also have a dance cam and can watch themselves rock out on tv.

And finally, I will end this post with some randomness. I have been tagged by my neighbor Julie. She was tagged by a friend on their blog to post six random things about herself. She then tagged me on her blog to do the same. So here it goes.

1.) I played the piano for about 8 years. I also took saxophone lessons for a year and a half and played the xylophone for two and a half years. I also took French class in high school for three years. I don't remember much from any of this. I can remember how to play heart and soul on the piano and how to order a beer in French but don't remember how to ask where the bathroom is so I don't think it's too helpful.

2.) I was president of my sorority. Okay, so it is a women's fraternity because sorority did not exist when we were founded. Go Phi Mu.

3.) I hate it when people where tennis shoes without socks. Yuck.

4.) My house burned down when I was a freshman in high school. The day after Thanksgiving too.

5.) I didn't have my first real haircut until I went into 9th grade. My hair was down to my waist. Since then, I can only grow it until my shoulders before I'm itching for a haircut.

6.) I would eat liver as a child and actually liked the taste although I haven't eaten it in years and don't know if I still would. Maybe it was the massive amounts of ketchup that I put on top.

So there. Some random Ami things. I hope you are all informed and feel like you learned something :) And since I only really know one other blog, I am tagging you Anissa. You're it! Oh and I'll post my top reasons why 2008 didn't suck with my next post!

Christmas

2008-12-27T11:15:00.001-05:00

Christmas came. Santa was here. I'll post when I finish digging out!

Busy Times

2008-12-24T10:04:00.002-05:00

I have been meaning to post an update for a while now. Things have just been so busy with the kids and Christmas and the hospital. I'll make this post a quick one and update with more detail later. Anyway, Joshua's spinal tap went well yesterday. His counts are great and we are scheduled to go back into the hospital for 4 days of chemo on Tuesday.

I had to take Adam and Noah to the doctor after Joshua's spinal yesterday. They both have really nasty coughs and sure enough they both needed to be put on oral steroids and antibiotics. Fun times in the Czorapinski house.

I hope you are all enjoying the holidays. Remember that no matter how much or how little is under the tree this year, the fact that you are surrounded by your loved ones is truly what matters.

The Blizzard has got to be coming

2008-12-18T14:13:00.003-05:00

Last night was Noah's school Christmas program. The entire Pre-K was up on stage in front of a ton of parents and grandparents. They sang songs, played bells and wore cute little hats on their heads. Now if you know us closely or have been following this blog, you know that Noah doesn't do crowds. He hates attention directly on him and placing him in front of hundreds of people might not be a good idea. I was not expecting much.

So the kids filed in. Right into the chapel and Noah has his head hanging down. Things don't look good. Jeff and I were in the far back of the room with Jeff's parents waiting to see if Noah would even go on stage. I'm still not expecting much. Then, the first song starts. And low and behold, my child's lips are moving. He's singing. Then the next song involved standing up and doing hand motions. There goes Noah again. I could have cried. I told Jeff afterward that it had been such a crappy week and Noah gave us the best gift. He participated. Oh the joys of being normal!

And now for our little Joshua man. Today we went to Hopkins for a count check. When we left on Monday, his ANC was in the 200's. Today, he has an ANC of 27,000. The child never ceases to amaze me. So, now we are on to a spinal tap on Tuesday (Merry Christmas) and then a scheduled hospital admission for new years. But hey for now, we're home, we're "healthy" and we're acting normal. I couldn't be happier!

Outta Here

2008-12-15T09:53:00.002-05:00

Counts are up. All is well and we are waiting for walking papers. Five nights in the hospital and we are so ready to get home.

Still Waiting...

2008-12-13T09:24:00.002-05:00

Joshua's counts are still in the dumps. ANC is still at 0. He received platelets yesterday and the blood that he got on Tuesday is running low again. His temperature is what concerns us. The fact that he has been getting antibiotics since Wed and this temp is still fluctuating, has caused the doctors to add a second antibiotic. They did a throat culture yesterday but we haven't heard back yet. Joshua is grumpy and really not eating. He talks about all the food he wants when he gets home but won't eat anything in the hospital. So, it looks like we'll be at least a few more days in the hospital. Please pray that they figure out what's going on with Joshua's temperature and that we are all home soon.

Just a little update from Hotel Hopkins

2008-12-11T18:36:00.003-05:00

Yes, we've checked in. Wednesday afternoon, Joshua started running a fever of 102.2. You know what that means. We raced up to Hopkins to find that Joshua has an ANC of 0 and that we have at least a two day hospital stay. As of today, his ANC is still at 0 with no sign of improving in the next day or so. So we're having some unscheduled rest and relaxation. He's not really eating much and feels pretty yucky. He has had a fever on and off but seems to have kept it in check for much of today. Hopefully, we'll start to see a little improvement by tomorrow. My guess for check out is probably Sunday but we'll see. The good thing is that we are hopefully getting this out of the way before Christmas. His counts are exactly where we expect them so the chemo is doing exactly what it is supposed to do.

You Better Not Pout!

2008-12-08T09:36:00.004-05:00

Yeah well someone better tell Joshua that. He doesn't believe me when I tell him Santa doesn't visit grumpy boys. And can I tell you that he is VERY grumpy. Yesterday, he stayed upstairs four about two hours and refused to come down. He undressed himself because he didn't want to wear clothes. Forget the fact that it was about 20 degrees here yesterday. Oh and the kid has no hair to insulate him. Other than that, he is is usual demanding self. So far we have remained fever free. He's not enjoying the nightly shots in the legs that Jeff and I have to give him but he always bounces back with a hug and a kiss. Oh, and don't forget that all important band aid!

As for the other two boys, they are enjoying the holiday season. All three boys have helped put up the tree, wrap presents, string lights, and bake cookies. It truly is a fun age for Christmas this year. Adam wants everything under the sun for Christmas except the "girl stuff." Noah loves to sing Christmas carols although he only knows Jingle Bells and only some of the words. We have our usual Czorapinski nightly dance parties where Joshua "shakes his booty." That is when he's not being a grump.

Hope you are all enjoying the holiday season as much as we are enjoying it!

Oh My

2008-12-03T11:24:00.002-05:00

That's what the doctor said when he looked in Joshua's ears last night after we noticed that Joshua was running a fever. Yeah, I guess the snotty nose and cough and junk finally caught up with him. He is still running a fever and the chemo was started anyway so we'll see as to when they might let us out of here. It still amazes me that with an ear infection and a cold that the kid can still have good blood counts. He truly is an inspiration.

Holiday Shopping

2008-12-01T17:05:00.002-05:00

Okay so Thanksgiving is over. Christmas is only 23 days away. And now it's time to start shopping. I am happy to say that I finished early this year. Yes, I have a few little odds and ends to pick up when I'm out but the majority is done. For those of you that haven't even started, I know how to help. What do you give to someone who has it all? Or what about that someone on your list that leaves you stumped? What about cookies? Everyone loves cookies. No time to bake? Well, how about giving cookies that mean something. How about cookies that help fight pediatric cancer? Now that's a gift. Check out Cookies for Kids Cancer and help out our kids as well as check one or two of those gifts off your list.

So now that I've finished my advertising, I'll fill you in on the Czorapinski's. We had a wonderful relaxing holiday. Jeff, Adam and I have awful colds that we can't seem to get rid of. Joshua has also started to pick it up. We are scheduled to go into the hospital tomorrow for three days worth of chemo. We are entering into Joshua's harsh part of treatment again. He will be hospitalized for chemo every three to four weeks from now until May. I pray that he continues to handle the chemo as well as he has up to this point. I can't tell you how the Lord is carrying him through this though. You would just have to see it for yourself. Our little guy is so full of energy. He is rotten as ever and his last round of steroids plumped him up like you wouldn't believe. The last week he was on them, he gained 4 pounds. We are just so blessed that he is doing so well.

The boys are excited for Christmas. Adam wants everything that comes on tv or shows up in a catalog in the mail. Noah changes his mind each day as to what he wants and Joshua gives it some serious thought but usually says an airplane. Hopefully Santa will deliver the right goods and all will be thrilled. They had a blast decorating the tree this past weekend and just love the lights outside. I have to say that as the boys have gotten a little older, Christmas is just so much more fun. I love to see the excitement in their eyes and the childhood wonder of Christmas. When you are faced with cancer in your life, you learn to never take things for granted. I don't take the fact that our family is able to be home and together for the holidays for granted. Please remember to enjoy and be thankful for what you have and to not worry about what you don't.

Small Blessings

2008-11-25T15:27:00.003-05:00

In the spirit of Thanksgiving, I am writing a post on blessings. Yes, we have so much to be thankful for this year. Joshua finished treatment. What a blessing. And while he relapsed, his bone marrow and spinal fluid were/are clear of leukemia. It's the small blessings. We have made it through 25 weeks of treatment and Joshua has remained leukemia as well as fever free. It's the small blessings. Adam and Noah are doing well. While Noah has pushed every button we have with his social phobias in school and sports, he has pushed through and is now enjoying every minute of karate. It's the small blessings. Adam has no sign of cancer and is smart as a whip. Another small blessing.

There are so many small blessings in our life. Other than the ones I've mentioned above, we are thankful for our friends this year. The old friends who have continued to be apart of our life and the new ones who have chosen to become a part of our journey. We are so thankful for you. Without your love and friendship, I don't know if Jeff and I would have been able to keep going. When Joshua relapsed, we could have fallen apart. Instead, we were lifted up by our friends and family. We have continued to lean on you for support, understanding and a loving hand. Yes my friends, these are the small blessings we continue to count.

You see, although our life is far from the norm and we could easily question God and the path that he has put us on, we are counting our blessings. We are enjoying life, living each day for what it's worth and thankful that God is a part of our life. We are thankful and blessed this holiday season. We pray that your families are as equally blessed and that you remember to look for and be thankful for those small blessings. Believe me, those are the ones that really count!

I Relay for...

2008-11-19T15:20:00.002-05:00

Joshua of course. But I also participate in the American Cancer Society's Relay for Life for my dad who is a survivor. I relay for my aunt, and my grandfather who lost their battle. I relay so that one day we won't have to relay. Last year our team, "Joshua's Journey" had a pirate theme. We had a HUGE ship built and sold pirate loot bags. We had swords and games but most of all, we had a blast. The heat was unbearable but we were there for a purpose. Even when the thunder and rain took away our chance to walk all night, we knew that we had did our part. Our team raised over $3,000 and I am so thankful for those who gave, participated and supported us. NOW, it's time to do it again.

Once again, Joshua's Journey will be making it's way around the track to fight back against cancer. The theme of Relay this year is "Wiping Out Cancer," a beach party theme. It will be held on June 13th-14th at the Kent Island High School. Please consider coming out and joining us. I can't tell you how much fun you will have and how rewarding it can be. If you are interested in joining our team or donating to our cause, please visit our team website at http://main.acsevents.org/site/TR?pg=team&fr_id=12852&team_id=360884
If you register before January, the registration fee is waived so go ahead and sign up to help us "Wipe Out Cancer!"

Teeth, The Karate Kid and Chunky Monkey

2008-11-14T09:57:00.003-05:00

Whatever could my title of this post mean? Well, a lot has happened in the Czorapinski household over the last week or so. First off, our man Noah lost his first tooth on Wednesday. He came home from school and when he smiled I noticed the tooth was missing. I knew it was really loose but didn't think it was quite there yet. Well, I asked Noah about the tooth and he didn't want to talk about it. We had already talked about it falling out soon and the tooth fairy coming but I think he was still unsure. Our conversation when something like this.

"Oh Noah, your tooth fell out. How exciting. Now the tooth fairy can come."

"Uh, huh."

"When did it fall out."

"In school."

"Did you tell your teacher?"

"No."

"Where is your tooth?" As I'm checking his backpack.

"It fell on the floor."

Only my kid...

But, we do have BIG news for Noah. He FINALLY participated in karate. It only took many soccer games and about 5 karate classes before he finally went out and had fun. Thank God!

And for the chunky monkey part of the post. Joshua is an eating machine. He will finish eating a ton of food, get up and tell me he's hungry. I swear he has put on at least 10 pounds in the past week alone. His little belly sticks out and he is so heavy when I pick him up. I hate to guess how much weight he will put on during this month long steroid round. We have ourselves a little stay puff marshmallow man!

I do have pictures of all of these events. The toothless smile, the karate kid and the chunky monkey but since Jeff is clearing off the computers he hasn't let me download them from the camera yet. But they're coming I promise.

Steroids

2008-11-10T11:29:00.001-05:00

I would update more often and tell you all about our life but we're too busy fixing grilled chicken for breakfast and steak the rest of the day. Oh and throw in the treats, cookies, cereal at 11 pm, goldfish and juice.

That Cancer Kid

2008-11-04T11:53:00.002-05:00

That Cancer Kid. He's anything other than what you would expect. We went trick or treating with other kids from our neighborhood. Noah, Adam and the rest of the gang visited the houses on our street and were finished. They were ready to call it a night. Who wanted to keep going? Who said "I'm not done, my bag isn't full?" Yeah, you guessed it. That cancer kid!

Jeff and I are so happy that Joshua is doing so well with chemo this time around. So far, we have made it through 23 weeks of therapy without fevers, setbacks or issues. He did have to have another echo today because the one last week showed some differences than the one before but we aren't sure if that is just from the blood he got prior or from the chemo. We'll see, but overall we feel very blessed.

The end of the weekend was great. Thanks to Jeff's parents, we were able to escape from the boys for a while and enjoy a relaxing anniversary dinner. We laughed and talked about how 6 years ago when we said those I do's we never imagined this roller coaster ride of a life that we are living. But, we are fast to remind ourselves that we have three beautiful children and a strong marriage. I guess if it weren't for the children and this roller coaster ride we're on, we wouldn't know just how strong our marriage is. God has his ways of letting us know that he's in our lives.

And now for the news of the day. No, it doesn't have to do with the election. It's that last night Adam ran a fever. He's been a complete beast for about 2 weeks and I knew that we were headed for a sinus infection. I may not have a medical degree but I darn sure am close to becoming a doctor. So a sinus infection as well as an ear infection. Ten more days of antibiotic. This always causes bathroom issues with Adam so I'm all so excited to get started on that. Add that to the fact that Joshua starts his next phase of chemo today which includes a month of steroids and let the fun begin.

Happy Halloween!

2008-10-31T15:00:00.003-04:00

Our little Monkey, Dragon and Bat!

A Little Blood, A Beating Heart and Halloween

2008-10-29T10:34:00.004-04:00

This is such a crazy week. After spending all day at Hopkins on Monday getting Joshua blood and then an echo cardiogram, we were back there first thing on Tuesday for a trip to the OR. Joshua's spinal went much better this time since we knocked him completely out. He still has about 13 more or so to go so it's nice to see things go smoothly. His cold is back but they were still able to do the procedure. Adam is miserable with the same cold and I think they have shared their germs with me.

Today, I get to take Noah for his 5 year well child visit and then tomorrow both Noah and Adam will visit the dentist. I'm telling you that I can't believe I actually schedule all of this torture. I must be crazy. And then to top things off, Joshua's oncologist called yesterday to say that his echo had changed and they aren't sure if it's from the fact that he had just gotten a unit of blood or if it's from the chemo. I thought it was odd to schedule the echo right after he finished receiving blood but I didn't question it so we get what we get. Anyway, we are scheduled to do yet another echo next week and hopefully his heart functions are back to what they were. If not, we have to drop the cardio toxic chemo. I just love that saying. Cardio toxic. Yeah, give that to my son. Sounds good.

But, on the positive side of things, Joshua's ANC was over 3500 and except for the cold, we should be able to make trick or treating. The boys are super excited. Noah is a monkey this year, Adam and dragon and Joshua a bat. Mommy is just excited that I was able to get at least one more year of the "cute" costumes before they decide to be some superhero, bloody, scary or terrible monster. Because you know boys and yeah, I've got three of them!

Happy Birthday Noah!

2008-10-24T11:07:00.004-04:00

Today our little guy turns 5 today! I can't believe how much Noah has grown and how he has turned into such a little boy over the last year. No more baby boy there. Last night I finished working on a video of Noah through these past 5 years. It is amazing at how time flies by. So Happy Birthday Pumpkin Head! We love you.

From this to this!

Life IS Fragile

2008-10-21T16:04:00.002-04:00

This is the motto that our friend Henry's family lives by. We first met Henry when he and Joshua were undergoing radiation treatment at the same time. Henry was recieving treatment do to having been diagnosed with Medulloblastoma (brain tumor). Jeff and I spent a lot of time talking with Henry's dad during our two and a half weeks of treatment. Since then, I have kept up with little Henry and his battle. This little boy who would eat his pop tarts and watch cartoons along side Joshua really found a soft spot in my heart. Yesterday, his family recieved the news any cancer parent fears. Henry's tumor has returned and there are very little options on the table. Please lift our friend Henry and his family up in prayer as they ask God to heal their son. http://henryschallenge.blogspot.com/

An Overdue Family Day

2008-10-20T13:05:00.007-04:00

We had such a wonderful family day on Saturday. First, we had family pictures scheduled. We get them done every year at the fire house and it happened to take place this weekend. Of course, Joshua did his little "I don't want my picture taken" act but I think we may have just gotten one of us where he didn't have his hands over his eyes and he was at least looking forward. I'm not holding out for a smile but looking at the camera is nice. I told the photographer not to try too hard. We're just happy that we can all be in the picture. Smiles, looking or not, we'll take it. Then, it was off to the pumpkin patch.

The boys have talked about getting pumpkins for weeks. They have been so excited and every time we passed a pumpkin stand they begged to get some. I kept telling them that we would but I am sure they were starting to not believe me. Imagine that. Anyway, we were off to the pumpkin patch were we took a hay ride out to the field. Joshua ran right out and found the first pumpkin he came to. I picked it up and came running back saying "Mommy look. It's just the one I was looking for." Adam was a little more selective as as I thought, Noah came back with a pumpkin he could barely carry. What a blast.

Decorating was just as much fun. I didn't want to carve the pumpkins so I found this package of features that you push into the pumpkin. I set out all the eyes, noses, mouths and ears and had each boy choose which sets he wanted. Then we put them in the pumpkins exactly where they wanted them. The results had Jeff and I falling on the floor. Of course Jeff and I had to decorate our pumpkins with the left over pieces so that made things even more interesting. I just can't tell you how proud the boys are of their pumpkins. And Jeff and I are so glad that even through the sicknesses we have in the house and the cancer in our life, we are still able to fit in those important and normal everyday events.

Rough Night

2008-10-15T17:55:00.004-04:00

Joshua was completely uncomfortable last night. He must have stirred every hour and cried out in what seemed like stomach pain every hour. When he wasn't crying out and kicking his legs, his pumps were going off so I didn't get much sleep. Add this to the fact that I think either the flu shot I got last week has made me sick or that the boys have given me some bug, and it was a rough night all around. Good thing Daddy came to the rescue today and is enjoying some hospital time with Joshua. Mommy on the other hand got to come home to take a short nap and is trying to get better REAL quick so I can return to Hopkins tomorrow to resume my Mommy duties. Hopefully Joshua will clear his chemo by Friday morning and then be back at home. This should be his last hospitalization for chemo for about 7 weeks. Of course we are coming up on outpatient chemo, OR visits for spinal taps and a month of steroids. But, the bright side if there is one, is that we are on week 20 of treatment and little man has stayed on track, made counts just as he should and hasn't had to be hospitalized for fever....yet! I'm one proud momma. Our boy is so amazing. Now if we can just get through the next 86 weeks.

I need a clone

2008-10-14T18:54:00.002-04:00

What a long day. I am exhausted beyond words. As a matter of fact, I can't believe I can even type words right now. Let's see. This is how the day went.

I got up and got the boys all ready. I had packed for the hospital last night and had everything planed. Noah was up half the night coughing. Adam still has his yucky cough and I have been hoping that it would improve since the antibiotic, but since Noah started I thought they should see doctor. Now don't forget that I needed to be in Baltimore at noon for Joshua's Methotrexate admission. Anyway, I called the doctor and they didn't have any appointments available. The good thing is that our pediatrician is really good about squeezing us in so they took my info and said they would call me back. A little while later I got a call saying that the boys had an appointment at 11:45. Good right? Well just wait.

So when did I get that call? As I am at the top of the Bay Bridge. Yep. Nice. It couldn't have came about 3 minutes earlier before I got on the bridge. No, I had to call Jeff who had already left work knowing that he would have to take Noah and Adam at some point, and tell him to meet me at the doctors. I then went across the bridge, got off at the first exit and went back across to home. I called my mom in the mean time and told her to go grab Noah from school. I met her in the driveway with Noah and Adam and threw them into the car. Okay so I didn't throw them but gave them a gentle "get in there we are in a hurry" push. So back across the bridge once again. It's a good thing I don't have a fear of bridges or we would have been in trouble.

I managed to make it to meet Jeff and was only 5 minutes late. I then got Joshua to Hopkins. Of course we rushed to make our appointment (I did call and tell them we would be a little late) only to not get a room until 5:30 this evening. And no, they haven't even started his chemo yet. Noah is now on an antibiotic for his cough and sinuses. Adam still has gunky lungs so he is now on another antibiotic. Oh the fun. Mommy will try to get a great night sleep tonight on the oh so comfortable hospital bed. More fun.

And on another note, thank you to everyone who wrote or posted about the top 10 items. I really enjoyed getting the feedback and they made me laugh as well. Also, thank you to those friends and family members who jump in to help when we need it without us ever having to ask. It truly means a lot to us to know that you are there with your words of encouragement, open arms and understanding.

Top 10 items a mother of boys can't live without

2008-10-09T14:47:00.000-04:00

1. Spray and Wash

2. a good vacuum

3. Clorox wipes (for the potty training and the years after because they just never learn to aim)

4. Band Aids

5. Windex (for those fingerprints EVERYWHERE)

6. Scrubbing Bubbles (for the bathtub after the outside time)

7. paper towels or baby wipes - for all of those dirty hands, faces, noses...

8. ear plugs

9. lollipops - for those times when you need to bribe them to be good, quiet, still...

10. And a camera to capture all the moments when the above items are needed

And yes, I realize most of these are cleaning products. Either you completely understand or you don't have a boy!

Now feel free to add those items that I have missed because believe me I could go on and on and as those of us with boys know, this list changes daily.

Best Friends

2008-10-05T21:55:00.002-04:00

This weekend Noah was outside when our neighbor yelled for him to come and play. The twins were in the house or else they would have went along because they love to play at Dylan's house. Anyway, Adam finally came outside and noticed that Noah was gone.

Adam: Mommy, where is Noah?

Me: I don't know.

A: Where is he, Mommy?

Me: We gave him away because he wasn't listening.

A: (with the saddest look on his face) But Mommy! Noah is my best friend! And Joshua too.

It's moments like this that a Mommy needs after Noah refused to play soccer or get his soccer pictures taken this weekend. He stood in the group shot with his arms crossed and a sour look on his face. Of course, I won't ever see the photo since he refused to cooperate and I refused to be ripped off the $37 by the photographer. God gives us the moments like the one above so that that our children live to see adulthood.