Always Something

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

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

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

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

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

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

**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

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

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!