Inspiring Minds Want to Know

In the past week I've gotten a few phone calls and comments about our blog. Some of you out there have commented that my posts make you laugh and cry. I appreciate all of your comments. This blog makes me laugh and cry too. It's really my way to vent it all out and just have an outlet. It doesn't always come out the way I want it to but it works. I love the fact that you are getting something out of reading about our crazy life. Continue to enjoy the wild and wacky Czorapinski world and keep letting me know what you like, don't like, laugh and cry at. I like the feedback. It gives me inspiration.

And speaking of my inspiration. Last night as I was once again folding laundry during the evening hours, I was treated to the most wonderful concert. It seems as though Joshua is a budding rock star. He had in his hands a blow up guitar. He was singing with some "oh's" and some loud squeals. He was just a jamming and then I heard it. He followed with a "thank you, thank you, thank you. I'm not sure but I'm guessing he's sneaked downstairs late at night and witnessed Jeff on Guitar Hero. I am sure that must be where he got it from but let me just tell you that it was the cutest thing. I love that kid.

Tonight I went to Noah's school for parent orientation. First, I can not believe that my baby is starting pre-k. I'm thrilled, don't get me wrong, that he's in school (and I can't wait to get the other two there) but it's hard to believe none the less. And now along with my friend Kathy, I am a room mother. You know me. I am just begging for punishment. Thanks Kathy for agreeing to help me out. This should be fun.

And finally, I got a call yesterday that was really sweet. When Joshua relapsed, I applied to an organization called Roads to Recovery . This organization sends gas cards, cafeteria coupons, transportation and help to families with children fighting life threatening diseases. Last month they sent us gas cards, parking passes and cafeteria coupons. They are a wonderful and much needed organization. Yesterday I got a call to say that Joshua was posted as their family inspirational story in their most recent newsletter. they are holding their annual fundraiser in October and have invited our family to be one of their honored guests. If you aren't busy and would love to support a wonderful organization, think about attending this fundraiser in October. We will be there!

BULL & OYSTER ROAST

Proceeds to benefit CHILDREN’S ROADS TO RECOVERY, INC.

Helping Critically Ill Children and their Families Since 1991!


DATE: Sunday, October 5, 2008
TIME: 1 P.M. – 6 P.M. (access to hall at 1 o’clock)

PLACE: La Fontaine Bleu
7514 S. Ritchie Highway – Glen Burnie, MD 21061

Buffet Service from 1 – 5:30 p.m., Menu Presentation: Succulent Chesapeake Bay oyster and clams - shucked to order and served on the half shell w/ Wye River cocktail sauce and horseradish. Baltimore Style Pit Roasted Beef, Cumberland Gap Honey Cured Ham, Maryland Crab Soup (traditional vegetable style), Italian Sausage, BBQ Chicken, Clam Strips, Sauerkraut & Kielbasa, Mashed Potatoes with Gravy, String Beans, Macaroni Salad, Cole Slaw. Assorted Iced Sheet Cakes.

Beverages will be served from 1 to 6 p.m.: Draft Beer (Coors Lite & Budweiser), Non-Alcoholic Beer,
Wine(White & Blush) and Assorted Soft Drinks.

By orders from the proprietor, Beverages may not be brought in from the outside; a Cash Bar will be available.

ENTERTAINMENT

Live Music Performed by: Bobby & The Street Rods

OTHER ACTIVITIES:

¨ SILENT AUCTION (Sports Memorabilia, Crafts and Much More)
¨ GAMING WHEEL
¨ 50/50 RAFFLE, BASKET-OF-CHEER & MORE!


Ticket Prices:

Ages 18 & Over -- $40.00 per person

Ages 12 to 17 - $20.00, 6 to 11 - $13.00, 5 & under - free


For more information call: 410 -750-1300 or visit our website at: childrensroadstorecovery.org

What a day

Joshua had an appointment at Hopkins at 9 am. I left the house with him at 7:30 am. We arrived and had his labs drawn. We waited and finally found out that yes indeed he did need blood. Great. We then had to wait for the blood to arrive. Two hours later it arrived and we got started. Finally, we were finished at 4 pm. Seven hours and that was just the beginning.

For those of you who don't live in Maryland, you may not understand what I am talking about. For the rest of you, you will. It took me three hours to get home from Baltimore today. Usually, it takes about an hour. The state decided it would be a great time to announce that the jersey walls on the bridge aren't exactly up to par. Apparently they found this out after a truck fell off the bridge two weeks ago and they did some testing. Now, they have started the "fixing" process and the thousands of cars traveling east had to go down to one lane. Brilliant. Couldn't they have started this tomorrow after I hadn't spent seven hours in the hospital.

And now the kicker. Joshua had asked for a milkshake on the way home. I wanted him to eat dinner first so after dinner Jeff took him out for the treat. I had been thinking all about the kit kat blizzard. I really wanted that kit kat blizzard and after today, I felt I deserved it. Well, he just walked in and told me they didn't have it and the guy thought they discontinued it. I think if I were there I might have just choked that guy. Now, I'm off to write a very strong letter to DQ.

Quiet time

The boys are all asleep. This is going to come back and haunt me tonight around 8 pm but I am basking in the the glow of the silence right now. No one has asked for a drink, told me they are hungry for the 15th time in a row after eating everything I have to offer, and there is no fighting. Oh man how I wish I could sometime freeze time.

Routine and The Mother of the Year Award

You know how I've been saying that I can't wait for fall so that we can get back into some sort of routine. I love routine. It's that type A, OCD personality that I have. I can only function properly with routine. Yeah, I can get by for a little while without it but there just comes a day were I fall apart. Today was that day.

Around noon today I get a call from Joshua's nurse up at Hopkins. She's wondering why we weren't there at 10:30 for Joshua's chemo. Yes, I was supposed to have Joshua up in Baltimore today for about 4 hours worth of chemo. I on the other hand was all scheduled to take him tomorrow. Go ahead and give me the Mother of the Year award now. Anyway, we've rescheduled for tomorrow but it has thrown me all off. It threw me so off that I couldn't remember anything else all day. Like the fact that Adam was walking around with a diaper so heavy with urine that it was to is knees. All because I hadn't changed him in hours. Or what about the fact that Noah needed his steroids (see next paragraph) and I totally forgot to give it to him until he was asleep tonight. I had to wake him up and then I spilled half of it. Yep, Mother of the Year, right here.

So about that steroid. I had to take Noah to the Nighttime pediatrics on Sunday morning becuase he woke up with a rash. He had told me all evening on Saturday that he was itchy. I couldn't find anything wrong but gave him a little benedryl and that seemed to help. On Sunday his neck was all broken out in what seems to be poison ivy. We have no idea where he got it from. Jeff still hasn't found out where he got his from three times this summer. But, Noah has poison and is now on a healthy dose of steroids. Yea us.

Adam and Joshua have had the worst time sleeping lately. They haven't been getting naps because of the whole summer time and no routine thing and they are a complete mess by bedtime. Then, they wake up about three times a night and make their way into our bed. Oh, and forget the fact that Joshua won't go to sleep in his own bed. I'm wondering where Jeff and I messed up with these boys. I had every book out there about babies, sleeping habits, great parenting. I guess they should give you a test after you read these things and apply them. I guarantee Jeff and I have failed. A big fat F! Add that to my resume for Mother of the Year.

So, it's been a day, a week, a month, oh hell I can't even say a year. It's been years. Will we ever be able to just take a day and breath easy. I keep telling myself when the boys are off with families of their own. Then of course, there will most likely be grandchildren to worry about. I have to sit back and laugh though becuase as bad as it seems some days, I think about that song by Trace Adkins, "You're gonna miss this." And yeah, I guess I will.

Let the battle begin

There was a battle in the house last night. In the wee hours of the morning. I could hear the results from my bed as I was awoken by Joshua's cry. He had fought the fought and had lost. It seems he fell out of bed and the bed won. Looks like I'll be putting the bed rails back on.

Clearing out the yellow crap

No, this post is not what you think. I hope the title isn't too misleading. That's just what I think of the methotrexate. The chemo Joshua's getting right now is yellow crap in my book.

Little man is doing great. His energy level is high and he is clearing his chemo much faster then we expected. That's good on a number of levels. First, it will get us out of Hotel Hopkins by tomorrow. Then, the faster he flushes it out of his system by way of pees and poopies, gives us the chance that the side effects will be less. Can I just tell you that I have been constantly pushing food and drinks in his hands for the past three days. And Joshua being my great eater has had no problem with that. Today, he had a huge brunch of chicken nuggets and french fries. I finally was able to grab some pizza a little while later and he ate half of that. Then he says, "what about my milkshake." I'm thrilled that he has such a good appetite. The effects of the chemo will hit in about 5 to 7 days so we'll see how things go.

And tonight I left him in the hospital for the first time since his relapse. I almost feel guilty but one more day on the inside and I think I would have went crazy. So here I am, home alone since Noah and Adam are with Nonna and Pappy at the county fair. I beg for silence all the time. I dream of "me" time. And yet, here I am. I'm missing the boys and their noise. Oh, and Jeff too. Yeah, I told you three days in the hospital and I'm already starting to go a little crazy! But, I'm really hoping that tomorrow night we'll all be back under one roof, with the boys fighting and the chaos. I'm really looking forward to our "normal."

A Frat Boy in the Making

Noah had quite a busy weekend. On Saturday he had his first soccer practice. We have the new ball, new shinguards, new cleats. He had the confidence of the world. I was so proud as he wanted to be the first in line to do what Coach Chad asked. That lasted for the first half hour. The second half hour was a different story. He came off the field for water and decided he was scarred and didn't want to go back on the field. He cried and clung to Jeff as if it would kill him. Great. Here we go again. We're that family. You know, the one that just asks for attention. Normal would be so nice.

Well, I guess that's asking too much. On Saturday night Jeff and I got the boys to bed at a decent hour. These days, that is becoming a chore. Anyway, around 10:30 as I was sitting in our room folding laundry, Noah walks in. Sometimes he wakes up and comes in our room to get into bed with us. Since we weren't in bed, he just stood there. I asked "Noah, do you have to go potty?" He said yes and walked into our bathroom. But instead of walking all the way in and to the right to the toilet, he stopped just inside the door, turned left and started to pee in our bathtub. Yeah, don't think we're getting that normal award quite yet!

And on the Joshua front, we're headed back to Hotel Hopkins today. We aren't sure how long we'll be in since we have to wait until Joshua is fully hydrated to start the chemo and he must clear it from his system before he can come home. But we'll be there till at least Thursday.

Our Old Home

We're back from the beach. Two full days of enjoying the sun and sand. Two full days of trying to be a normal family without the thoughts of chemo, hospitals, doctors, brusies, counts or fevers run through our mind. Of course all of those things did race through our minds, but we didn't let it stop us. We had a beautiful oceanfront room. We could open the door to the patio and listen to the ocean. It was relaxing and we enjoyed every minute. Now, it's back to reality.

Monday is a day that already has me sweating. Methotrexate is a word I dispise. Most of you have no idea what that word is. Count yourself lucky. Joshua will recieve high dose methotrexate on Monday and it will be awful. I pray that now that he is older it won't be as bad but he will get it four times over the next few months. Then, he'll get it four more times a few months after that. It is the one chemo that he does not tolerate very well. It's the one that I could just rip off of the iv pole, through it against the wall, spit on it and scream at it. Yes, I wish I could do that to all of them but a little more with this one since I can see the visual signs of its existance. Vincristine (the one that causes him leg pain) is starting to work its way into that catagory as well. We won't see that drug again for a few more weeks though.

So, we are sucking in all the moments this week and weekend that we can. We are preparing for lock down and hospital stays. It's so nice to have Joshua be able to ride is "whee wheeler" or climb on the brown park with Adam and Noah. And as much as it drives me crazy it's wonderful to hear him ask for yet something else to eat. We've been trying to pump him up lately and he is now a big fan of milkshakes. I'm hoping if he gets to the point where he can't eat, that milkshakes will save the day.

Our New Home

Or so that is what Noah calls the hotel we are staying at in Ocean City. Yes, we decided on the spur of the moment to take a break. Noah can't understand that we aren't living here for real. I think he finally is starting to get it when we tell him it's just a sleep over. Hotel is becoming a new word in his vocabulary. Joshua's counts were good on Tuesday and we really needed a break. The chemo that he is coming up on Monday will pretty much knock him out. It causes a build up of mucus and therefore in the past it has caused him to stop eating. It has also caused fevers and a lot of hospital stays. He will get this drug a lot in the up coming weeks. So, we're taking advantage of our good time and at the beach. We had only planned for one night but since we're having a blast, we've decided to stay for one more.

So yesterday we went to the beach. Of course we go in the late afternoon and Joshua can't go in the water but we still had fun. The boys loved it. They rolled, jumped and ran through the sand. We went to the pool and ate dinner outside on a patio where we were in our under our own little pergola. All to ourselves as if they were waiting for us. You know, that cancer family that is just trying their best to enjoy life. I'll be sure to post more pictures and more details tomorrow after we get home but right now there is sand, sun and lots of fun waiting.

Bruises, Feet and Petting Babies

It has been such a busy weekend. The boys were busy playing outside and driving us crazy. Jeff and I spent the weekend planting trees, bushes and creating more flower gardens. I have no idea why we create more work for ourselves but we're very good at it. We were also treated on Friday night to a wonderful dinner. Our friends Paula and Mike came by to cook us up something special. Thanks again for dinner.

As far as Joshua, he did not get an infusion of platelets on Thursday. I have a feeling that is to the fault of the doctor and that he really should have gotten one. He is one bruised up mess right now. I believe that his platelets are still really low and that we will have to add an infusion tomorrow. I will not allow them to let him go with his platelets that low ever again. He also seems to have a new problem in the works. It seems as if the bottoms of his feet are chapped and cracked. Tonight I coated them with Aquaphor and made him sleep with socks on. He wasn't to happy with the lotion but I'm hoping that will help. Cracks in the skin can allow infection so we don't want to let that happen. Oh the fun times.

And today, Jeff's sister Amy and her husband Nick became the proud parents of baby Gianna. Jeff and I were able to escape our gang thanks to our wonderful neighbors Chris and Kelly. They watched the boys so that we could go to the hospital and meet our new niece. Thanks again guys for the lunch on Sunday and for keeping our gang under control while we were gone. And congrats to Amy and Nick on your new addition. Of course, when I told Noah about the baby he said he couldn't wait to "pet it." Good thing he was so young when his little brothers came along!