What will you celebrate?

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

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!

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

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

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

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.

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!

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

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

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

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

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

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.