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!
Wednesday, December 31, 2008
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.
Posted by Ami Czorapinski at 1:26 PM
Tuesday, December 30, 2008
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!
Posted by Ami Czorapinski at 5:28 PM
Saturday, December 27, 2008
Christmas came. Santa was here. I'll post when I finish digging out!
Posted by Ami Czorapinski at 11:15 AM
Wednesday, December 24, 2008
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.
Posted by Ami Czorapinski at 10:04 AM
Thursday, December 18, 2008
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!
Posted by Ami Czorapinski at 2:13 PM
Monday, December 15, 2008
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.
Posted by Ami Czorapinski at 9:53 AM
Saturday, December 13, 2008
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.
Posted by Ami Czorapinski at 9:24 AM
Thursday, December 11, 2008
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.
Posted by Ami Czorapinski at 6:36 PM
Monday, December 8, 2008
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!
Posted by Ami Czorapinski at 9:36 AM
Wednesday, December 3, 2008
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.
Posted by Ami Czorapinski at 11:24 AM
Monday, December 1, 2008
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.
Posted by Ami Czorapinski at 5:05 PM
Tuesday, November 25, 2008
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!
Posted by Ami Czorapinski at 3:27 PM
Wednesday, November 19, 2008
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!"
Posted by Ami Czorapinski at 3:20 PM
Friday, November 14, 2008
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."
"When did it fall out."
"Did you tell your teacher?"
"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.
Posted by Ami Czorapinski at 9:57 AM
Monday, November 10, 2008
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.
Posted by Ami Czorapinski at 11:29 AM
Tuesday, November 4, 2008
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.
Posted by Ami Czorapinski at 11:53 AM
Friday, October 31, 2008
Wednesday, October 29, 2008
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!
Posted by Ami Czorapinski at 10:34 AM
Friday, October 24, 2008
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!
Posted by Ami Czorapinski at 11:07 AM
Tuesday, October 21, 2008
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/
Posted by Ami Czorapinski at 4:04 PM
Monday, October 20, 2008
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.
Posted by Ami Czorapinski at 1:05 PM
Wednesday, October 15, 2008
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.
Posted by Ami Czorapinski at 5:55 PM
Tuesday, October 14, 2008
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.
Posted by Ami Czorapinski at 6:54 PM
Thursday, October 9, 2008
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.
Posted by Ami Czorapinski at 2:47 PM
Sunday, October 5, 2008
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.
Posted by Ami Czorapinski at 9:55 PM
Thursday, October 2, 2008
when they don't know what to say. You know like when I'm standing in the elevator at Hopkins and someone notices Joshua and gives me that "oh how sad" look. Or when you put someone on the spot and they have that confused "what are you talking about" look. Well I had on of those moments today where I knew I could cause one of those looks on a few people's faces and if you know me, you know that I took the moment and ran with it.
Today I had to take Adam to the doctor. He has a nasty cough and I thought maybe an ear infection. No ear infection but some gunky lungs so add another antibiotic to the medicine cabinet. Okay so I go into the doctor's office. I'm standing at the counter and the receptionist hands me a clip board with the forms attached.
Receptionist: and since it's National Breast Cancer Awareness month, here is a pink ribbon for you to wear.
Okay so you know it's coming right. Here it is. Here's my chance and the moment.
Me: Now did you hand out gold ribbons last month?
Both receptionists look completely dazed and lost.
R: Gold ribbons?
Me: Yes. Gold ribbons. The gold ribbons because September is National Childhood Cancer Awareness month.
R: We didn't know.
Me: Well given that you are a pediatricians office, I would hope that you would know and I will speak with the doctor about it.
Yep. They didn't know. Kind of like the rest of the world. Don't think it would matter anyway. No one seems to know that the gold ribbon represents childhood cancer. And why doesn't the world know? That's because the stupid media makes no point or effort to promote it. Guess no one wants to think about a child having cancer. Well tell that to the millions of parents out there who have a child with cancer. Tell us you don't want to think about it!
Now Anissa, I am off to write that letter for you!
Posted by Ami Czorapinski at 8:18 PM
Friday, September 26, 2008
Posted by Ami Czorapinski at 11:14 AM
Monday, September 22, 2008
Posted by Ami Czorapinski at 4:22 PM
Thursday, September 18, 2008
This is just one of those posts where I thank all of our friends. Since Joshua relapsed, we have had dinners made, offers to watch the kids, visits and much more. We are so blessed to have you all as friends and thankful for everything you have done from pray for to help out our family.
Tonight, Jeff is out with the guys. He is enjoying a little down time without his lovely wife and his darling children. Okay so he's escaping the house of chaos but it sounds better the other way. Anyway, as he was leaving, I tell the boys that Daddy is going to play with his friends for a while.
"You know, like you get to go and play with your friends."
"Daddy is going to play with his friends?"
Then Joshua looks at Jeff and in the sweetest voice ever, he says
"I'm your friend Daddy. I want to go with you."
Posted by Ami Czorapinski at 9:06 PM
Tuesday, September 16, 2008
I'll make this a quick post since I am exhausted. Joshua had his first spinal tap since last December with chemo into the spine today. The drug that they use to "dope" him up didn't work. He was hard to hold down and get into position. Thank God the doctor that was doing the procedure is extremely good and fast. She did the procedure in record time. It was the after effects that have made us decide that from now on we will start to go back to doing spinals in the OR. Well that and the fact that we can't promise to be able to hold him so well in the future. Joshua screamed and cried and was completely uncontrollable for about an hour afterward. Then it fell asleep and was kind of restless the rest of the time. While that part wasn't good, there were no complications from the procedure so we'll take what we can get.
On the other hand, in complete Joshua form, he asked for a happy meal on the way home and is now dancing to the theme song from Bob the Builder. I thank God for small things.
Posted by Ami Czorapinski at 6:54 PM
Sunday, September 14, 2008
I know I haven't been the best blogger in the world. It's been a while since I last updated but we've been really busy. And let me just tell you all about my kids.
My kids are the ones that stand out in a crowd. I wish it were for something like being super smart but nope that's not our kids. We have to be the weird ones. The ones you just can't figure out. We're like that.
Anyway, on Friday I got a note sent home in Noah's folder. Mind you that it was only the second week of school. The letter started with "I so hesitate to send this letter." It can't be good. What has my child done in this church school? Only my child. Well, it turns out that it isn't what he has done. It's what he hasn't done. It seems that Mr. Noah man "really does not want to participate in school." He is excited at drop off, enjoys his special job of the day and talks about school as if it were the best thing. Actually doing anything the teacher asks him to do, like artwork and such, not happening. Great. My child. Add that to the fact that we stick out like a sore thumb because we have the bald kid with cancer and we're well know in the area. They might not be able to pronounce our last name but gosh darn it people know who we are.
Well, Noah added to that attention on Saturday. We talked about his soccer game. We played in the yard. He was excited about the uniform. He talked about liking soccer. We get there and he refuses to play. An entire hour in the 90 degree heat and my child only wants to run on and off the field to get a coin that the coach was trying to use to get him to play. Actually go out, stand or even try wasn't happening. Ahhhh, my kid.
So, I wish I had a great picture to post of my little soccer guy. I wish I didn't have to spend time on the phone today telling his teacher to try some tough love. I wish I could figure out exactly what it is Noah needs. It's easy with Joshua. He has cancer. He needs chemo and radiation and medications. With Noah, nothing is consistent. He will do some things some of the time and not others. He will go up to the stranger in the park and ask them to play yet he won't dance during music with his friends at school. It's frustrating. I'm considering trading this model in for the upgraded one. Of course, even with his faults I've grown fond of him so that isn't happening. Guess will have to work it out. We're going to try some more one on one attention. We might even sign him up for some martial arts. We'll get it but it's going to be a journey.
And that would be my kids. God sure does have a plan for our family and our boys and I sure am completely in the dark as to what it is.
But what else has kept us so busy you ask? Well, Jeff and I finally got to get some alone time this weekend. Our neighbors offered to watch the boys on Saturday night so we could go out to dinner. We watched Dylan for them on Friday night so that they could do the same. It's a great plan and they don't mind taking three more (bless you Kelly and Chris) so it works out. It was funny when we picked them up though. Adam had a pooping accident and Chris had to give him a bath. Apparently Chris and Kelly have some very nice towels because Adam was sure to tell them "these are nice towels." He also thinks they have the best tv in the world and Kelly will tell you that they are probably the only people on the street without a flat screen LCD. That's my Adam.
Joshua had a stinky diaper while there as well. Kelly had to bribe him to let her change it. When cookies didn't work she resorted to lollipops and that did the trick. I actually feel guilty that we didn't pay them to watch our "crappy" kids. And speaking of that word...
Joshua was eating dinner on Friday night. He was completely enjoying every bite of his steak.
Me: That's it Joshua. That's all the steak there is.
Joshua: It's all gone?
Me: Yep. You've eaten it all.
Joshua: Aw, crap.
So that's our weekend. We did get to take the boys to the toy store today and they each got to spend a gift card they had. Noah got a fire hose ball shooting toy. Joshua picked out an ambulance that makes noise and of course Adam got an excavator. Some things with these kids throw me for a loop. Others are completely expected. I just never know what I'm going to get from these Czorapinski boys!
Posted by Ami Czorapinski at 8:15 PM
Monday, September 8, 2008
I'm not one of those Mom's. I don't have it all together and my kids aren't perfect. I know. It's a surprise to me too but it's true. I dream of having the kids that wear designer clothes. Hell, I dream of wearing designer clothes. I would have a spotless house and the boys would not need to be reminded to say things like, "thank you, please and yes mother." I would have a PDA and actually know how to use it. I can just imagine it all.
This is not the case. MY kids wear JCPenney clothing and whatever I can find on the clearance rack. I wear the same clothes I wore four years ago only they are a lot tighter. The house is far from spotless. Every room has toys all over the floor and just yesterday my mother-in-law found a french fry on the carpet in the family room. I don't remember when the boys last had french fries. As far as a PDA I barely know how to use my cell phone and don't even think about asking me to text you.
It's our life. I laugh every time I watch Jon and Kate and they say "it might be a crazy life, but it's our life." I think "yeah, and mine too." Our life is one big crazy mess. We try our best to be organized, have family dinners, get to bed on time and keep it together but we just aren't that family. We're the Czorapinski's. The family with three rambunctious boys and the house where you can get away with a lot because Mom and Dad are too overwhelmed with getting through the day to care if you take your fruit loops into the den. When Mom finds the bowl you hid under the hope chest three weeks later, she might care but by then it's too late. That's us. And to be completely honest, I wouldn't change it. Even if I had the designer clothes and the PDA, they would have snot or ice cream on them and juice spilled all over. No, I'm the Kool Aid mom. The kids come in at the end of the day with dirty clothes and feet and a smile on their face. And as I tuck them in and tell them I love them to the moon and back, so do I.
Posted by Ami Czorapinski at 8:35 PM
Friday, September 5, 2008
We decided to beat the traffic in the best way I know how. I busted us out of Hopkins around 5:30 this morning. Now that is the way to travel over that bridge. Joshua finished up his rescue drug around 3 this morning and the doctors told me yesterday that we could go after that and before they came in for rounds so I took them up on the offer. As we walked through the doors, Joshua promptly yells out "oh Adam, Noah I'm here!" I'm telling you he is sure to be the life of the party one day.
Posted by Ami Czorapinski at 9:54 AM
Thursday, September 4, 2008
Last night I went home for the evening. That meant that I had to fight through 2 1/2 hours of traffic because of that stupid bay bridge. Then, I had to rush around to pick up Noah (thanks again Kelly for watching him for me) and then get him fed, bathed and in bed. Oh, I had to water the lawn, take out the trash, check the mail and do all the little "mommy things" that needed to be done before hitting the bed myself. I was able to sit down and watch Sarah Palin's speech at the RNC. What a woman. I think I have it bad some days with my busy schedule, three young kids and the cancer life we're living, but this woman has 5 kids, one with Downs Syndrome, is already a governor and is running for VP of the US. Wow! I'll have to add VP to my list of goals.
Anyway, while I was snuggled up in bed with Noah last night, Jeff got to spend the night on the oh so comfortable hospital pull out. He apparently doesn't get too bad of a sleep though because at some point in the night, Joshua woke up and had a party with the nurses. You see he fell asleep yesterday around 5:30 and didn't wake up until about midnight. Jeff put on some movies for him and went back to sleep. Well, this morning he awoke to find out that Joshua had been making his way around the halls with his nurse. He had gotten her to get him out of the room and push him in a little buggy. He played hide and seek with the nurses and also got a chance to play with play dough and crayons. The nurses made him balloons with faces out of exam gloves and he just had a great time. When I asked him about it this morning he said. I played hide and seek and didn't wake up Daddy. Glad to know he's having fun in the hospital at 3 am. These nurses are just the best.
Noah's enjoying his first week of school. I haven't had much time to talk with him about it and of course it's complete work trying to get information out of a 4 year old but he seems to be liking it. I know it's wearing him out since he is exhausted come bed time and doesn't put up a fight to go down. I just love school.
And Adam is still doing well with the pee pee thing. I am so proud of how far we have come in the past week and a half. I keep telling him once he gets it all down we'll have a potty party. Cake and all!
So all is well. Hopefully we'll be able to bust out of Hotel Hopkins by early tomorrow morning. It's been a crazy week with juggling kids, school, soccer and the hospital. Jeff and I have only had a few moments face to face this week. I'm looking forward to a relaxing and quiet weekend. And we all know that with three boys, that just won't happen :)
Posted by Ami Czorapinski at 2:06 PM
Monday, September 1, 2008
Don't quite think it's a happy thing but what else can you say. It sucks that there has to be a childhood cancer awareness month. Or even better that most people in the world have no idea that it's childhood cancer awareness month. Last year I wrote a letter to our local paper asking them to do an article on the topic. I explained that my child was fighting the fight of his life and that there were at least two other children, and I am sure a few more that I didn't know, fighting the same fight in their reading area. I wanted them to just make the public aware. I had to write to them twice to get a response. What did I get? Well, about a month later I got a call from a reporter that said he wanted to write a story about Joshua. That wasn't quite exactly what I was going for so I told him to no thank you and that I was completely disgraced at the fact that they wouldn't shed light on the topic of childhood cancer. All they wanted to do was write about our story. We aren't a charity case and that's what it seemed like they thought we were looking for. So, the story never got written and another year went by with most of the world unaware that September is National Childhood Cancer Awareness Month. Get used to that statement. I'm going to remind you a lot this month so that you can spread the word!
Okay, so for the scoop on the Czorapinski family. We've had a busy weekend. The boys got to do a little fishing with Pappy on Sunday. Joshua was thrilled to catch fish. Every time the kid put his line in the water, he would hook two fish. I said it's the twin gene he's got but in reality I am hoping that he just has that kind of luck. He could use it. It was really nice as Jeff's parents were able to join us for the trip and the boys got to fish with both Pappy, Bud and Bebe. What an afternoon.
And for the biggest news. Adam is a big boy now! He has been in "big boy pants" all week and has finally gotten the pee pee thing all worked out. We haven't had a pee pee accident in two days. WHOO HOO! Two kids down and one to go. Can you tell that Mommy is excited. Now for the poopy thing. DISCLAIMER: if you do not like bathroom stories do not read any more! You have been warned. Okay, so tonight Adam and Joshua are in the bathtub. I have scrubbed both boys and am in the process of gathering pjs. All of a sudden, Adam gets out of the tub and stands at the potty. I am so excited because he needed to go and for one thing he didn't go in the tub. For the other, he didn't need me to tell him to go to the potty. Well, he's standing there and I notice he is kind of grunting. I say "Adam, do you need to go poopy?" He says yes and I tell him he needs to sit down to go. We're still working on that part. So I go to put him on the potty and Joshua stands up in the tub and says so matter of factly, "oh look Adam, you dropped one." When I looked down, sure enough there was poop on the floor. Can I just say that Joshua's comment had me rolling. Ah, this is one story that I can't wait to tell when they get older.
And so, it's the beginning of another week. Noah starts his first day of pre-K tomorrow. He has grown so much over the summer and I can not wait to see how much he will learn over this next year. Joshua also goes in for the nasty yellow chemo tomorrow. At least four days in the hospital and hopefully he handles it as well as he did this last time. I plan to keep him eating and drinking so that he can clear it in record time again. The faster he clears it, the less chance of side effects being so bad and the sooner we can come home. Here's to my little warrior and fighting through yet one more week of treatment. We are on week 14 out of 104. It will be a crazy week but I am looking forward to getting another one behind us. We are so blessed that he has handled this rough stuff as well as he has. It is only by God's hands that he is so strong.
Posted by Ami Czorapinski at 9:40 PM
Thursday, August 28, 2008
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.
Live Music Performed by: Bobby & The Street Rods
¨ SILENT AUCTION (Sports Memorabilia, Crafts and Much More)
¨ GAMING WHEEL
¨ 50/50 RAFFLE, BASKET-OF-CHEER & MORE!
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
Posted by Ami Czorapinski at 10:35 PM
Tuesday, August 26, 2008
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.
Posted by Ami Czorapinski at 8:26 PM
Friday, August 22, 2008
Posted by Ami Czorapinski at 4:04 PM
Monday, August 18, 2008
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.
Posted by Ami Czorapinski at 9:10 PM
Friday, August 15, 2008
Posted by Ami Czorapinski at 4:12 PM
Wednesday, August 13, 2008
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."
Posted by Ami Czorapinski at 8:45 PM
Monday, August 11, 2008
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.
Posted by Ami Czorapinski at 8:34 AM
Friday, August 8, 2008
Posted by Ami Czorapinski at 12:11 PM
Thursday, August 7, 2008
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.
Posted by Ami Czorapinski at 8:46 AM
Monday, August 4, 2008
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!
Posted by Ami Czorapinski at 10:09 PM
Wednesday, July 30, 2008
My mother has a saying. She has said it to me many, many times. It isn't something that she made up herself. Actually, it's pretty common. It's "boys will be boys." She likes to remind me often as if I don't know first hand. Heck, she only had one. I have three. Sorry Mom, I win. But today was one of those days that the boys were boys and I just had to go with it.
It was one of those days where the weather was too hot to go outside. For three boys with enough energy to power a small town, those elements do not mix. Noah and Adam were determined to destroy the house. I swear that there isn't one single room I can go into without tripping on toys. They wanted to wrestle and then cry about who hit who in the head, leg, arm, you name it. Joshua chimed in every once in a while as well. I tried the time outs, punish to your room, wait till Dad comes home and nothing worked. It was just a "boys will be boys" day.
So tonight we had take out for dinner. I took only Joshua to get a milkshake since he actually listened today. It was supposed to prove a point and teach Noah and Adam a lesson. I'm not sure if it worked. After the milkshake, I left Jeff to do the bedtime routine while I went to soak in a bubble bath with a good book. I enjoyed my time and when I felt safe, I got out and tucked the boys in. I said their prayers with them the same way I do every night. And I told them the same saying I say to them every day at least once a day. "I love you to the moon..." And they respond at the same time as I do with "and back."
So even after one of those days, I am thankful for those sweet words. It reminds me of how blessed I truly am and it helps to ease the stress of the day. Someone once told me that there is a special place in heaven for a mother of three boys. Lord, I sure hope so.
Posted by Ami Czorapinski at 8:04 PM
Tuesday, July 29, 2008
He needs blood. I knew Joshua was looking pale and would have been completely surprised if he didn't. We'll go back to Hopkins on Thursday for a good helping of some red blood and maybe a side of platelets. His platelets are at 87 so we'll see what they decide to do. I was surprised however that his ANC was above 1500. Technically that is the magic number we have to get to so that we can stop giving him his nightly shots in the legs. Today his was at 1800. The decision was made to continue the shots until Thursday though because we don't believe he has hit his low point yet. That should be about now so we'll see if his ANC is around the same or has dipped down come Thursday. Let's just say Joshua is not happy about this decision.
And I have to say that the boys are having a typical little boy summer. Tonight, Adam fell asleep on the sofa at around 5:30 and he hasn't woken yet. He is bruised beyond belief and is covered in mosquito bites. Both Noah and Adam have that little tan where when they take their shorts off the little tush is white as can be and everything else is tan. That is just the cutest sight. A Mom's image of summer. I swear I am going to get a picture and pack it away for those future girlfriends.
Even though the boys are enjoying summer, I am looking forward to fall. Fall is my favorite time of year. I love the cooler weather and the back in school routine. This year Noah will start Pre-K. He'll go 5 half days and I plan to work with the other two during that time since we had to withdraw them from the nursery program we had planned to send them to. I am also planning on potty training boot camp once again. Both Adam and Joshua are ready they just don't want to do it. They REALLY want to go to school so I think that when we drop Noah off and they can't go that they will get on board. I keep telling them that in order to go to school they have to go on the potty. We'll see how it all goes. Wish us luck!
Posted by Ami Czorapinski at 9:30 PM
Monday, July 28, 2008
Posted by Ami Czorapinski at 2:18 PM
This pretty much sums up the weekend. The boys had a great time enjoying the outdoors on Saturday. Bud and Bebe were visiting and I am not sure who wore each other out more. The boys were all exhausted by the time bed time rolled around. Mommy and Daddy were as equally exhausted.
By the time Sunday rolled around I decided that we needed to get out of the house. Having a child with cancer pretty much limits what you can do. Sometimes I feel as though we are on house arrest. We do our best to make the most of it but these four walls can drive you insane after spending weeks on end looking at them. Besides, I know that his winter we will be stuck in even more. So, I suggested that we go so Kung Fu Panda. The thought was that since the movie had been out since the beginning of June, there wouldn't be a lot of people going to see it. We'd go, eat popcorn, laugh a little, and escape the heat of the day for a while.
The plan actually worked. Okay, so about 2/3 of the way through the movie Joshua started screaming that he wanted to "go home," and Adam was becoming squirmy but we did make it to the end. There was popcorn and sodas and a limited number of people. No one asked to go to the potty during the movie and we made it in and out in record time. Actually, it started to pour down raining just as we were getting out of the movie so we did have to get out in record time but all the same it was a fun family adventure. Of course the boys have picked up a few kung fu moves and have decided to practice on each other. Still don't know if kung fu was the right movie to see.
Then, we got home and the most wonderful dinner delivered to our door by our friends Keith and Kathy. It was so nice not to have to think about what to make and just sit down and enjoy. Thanks guys for feeding our gang!
During dinner though we were surprised by an unexpected power outage. Now by this time the storm has beeb passed by four about three hours. The sky is sunny and bright. The house is dark. Good thing dinner was already cooked and we only had to heat up garlic bread on the grill. I would have been completly upset if my already prepared, smelling delicious dinner was half cooked and we lost power. But, we had a nice dinner and then decided we needed a walk. One because what else is there to do when the power is out and two, because we probably gained five pounds from dinner. The boys get to ride in the stoller and Jeff and I get a workout.
So the power didn't return until about 11 pm. By this time we've all gone to bed. Joshua spent the good part of the night crying and complaining that we wouldn't turn the tv on. All three boys enjoyed playing with the flash lights. Noah was convinced that we were going camping. Jeff and I had to give Joshua his nightly shot whild Noah held the flashlight for us. We joked about how much we rely on electricity and what people did before.
It's funny but for once we had a "normal" weekend. There were no fevers (thank God) and we were able to enjoy some time together. My hope is that this next round of chemo goes better then I am expecting. I hope that we are able to enjoy some more weekends like this one. Oh, with a little less kung Fu and a little more power though.
Posted by Ami Czorapinski at 10:39 AM
Friday, July 25, 2008
In case you haven't heard, Randy Pausch died today. This man is none other than an inspiration. I can't quite tell his story as well as he can, so you NEED to check out what he is most famous for. It's called "The Last Lecture" and it's how we should all live our lives. I first watched Randy's lecture months ago and it really moved me. I hope it inspires you as well.
I finally got a chance to sit down and watch something other than Dora, Backyardigans or Max and Ruby last night. I watched the new show Hopkins. If you haven't seen the show it's a real life hospital drama about the doctors and patients of Johns Hopkins, aka our home away from home. What amazed me was not the story of the doctors or even the patients. I was amazed at how I could tell the hallways, operating rooms, anesthesiologists (yes, Joshua has had some that were in the OR during the episode), and doctors. It is unreal how your perspective changes with cancer. I didn't watch the show like most people.would have or do. I watched to see if I knew the rooms and doctors. The sad part is that I knew a lot.
And since I have titled this post inspiration I guess I should talk about mine. The boys are doing great. The energy level is constatly stuck in overdrive. I'm not complaining since I know things could be a lot worse. Yesterday I did some organizing and rearranging of their rooms. Noah was very excited. Thanks to Kelly and Nick for the new picture. Noah thinks it's "super cool." The cleaning was an effort to get into all the cracks that the boys seems to hide items in. I am amazed at how many juice boxes, goldfish and puzzle pieces you can find under a bed. Why do boys always want to hide things. They put everything under the sofa, under pillows, under rugs. Is this just a boy thing or do girls do it to? And will they outgrow it? I live in fear that I won't find that one hidden apple one day. I guess that thought gives me the inspiration I need to constantly be cleaning!
Posted by Ami Czorapinski at 3:01 PM
Thursday, July 24, 2008
And it's a good thing. Joshua was so ready to bust out of the hospital. Mommy was ready as well. He recieved 5 doses of chemo in the three days we were there so he's pumped up for another two weeks. Now we do the no fever dance and return to clinic for a count check on Tuesday.
Adam and Noah were happy to see Joshua and they resumed their tearing apart the house with their boyness in record time. I can't tell you how many times I've used the words "stop or someone is going to get hurt" in the last 12 hours. Of course they don't stop and someone always gets hurt. Boys...
And finally, it's a good thing we're home because Jeff has made us famous. He's made the local newspaper for the second time in months. The first time was back in June when he was asked at Relay for Life what his vacation plans for the summer were. They took a mug shot and that following Wednesday, big as life, there he was. Then, about two weeks ago we had an unwanted nighttime visitor. Jeff had left his truck unlocked and it seems as though someone took it upon themselves to help themselves to his iPod. They also visited our neighbor and took her iPod as well as camera. Jeff and Kelly both filed police reports and wouldn't you know it, they made the paper. In the "News in Brief" section, they have a little blurb about the theft. They not only post Jeff and Kelly's full name, they print our address and the fact that his truck was unlocked. Great. Guess that Brinks security system may come in handy after all.
Posted by Ami Czorapinski at 9:36 AM
Wednesday, July 23, 2008
All of this blogging and page designing is new to me. I am amazed that I have gotten this far but I am learning. Most of it is trial and error. Okay so mostly error but at least the page is up and working.
I've added an e-mail subscription link to the right for all of you that have told me you miss the daily reminders to check out the World of Czorapinski. Hope this helps! If there is any other element that you would like to see let me know and I'll do my best to get it on here.
Posted by Ami Czorapinski at 9:35 AM
Monday, July 21, 2008
Nurses come in to give Joshua chemo wearing white gowns and wearing gloves. They never handle it any other way. Then, they pump it into my son. Sounds good. I'm telling you though there has got to be something extra in it this time around. Joshua has been a talking, energetic little guy today. He has helped his nurses take his temp, blood pressure and given them high fives. He wasn't too thrilled that we had to start the eye drops again but bounced right back. It amazes me that he can be so happy while large jugs of chemo are going straight into his veins and he is tied to a hospital bed.
Obviously his counts were good today. His ANC was 1380 and platelets were over 500. Well into the start range. We're checked into Hotel Hopkins for the next two nights and hopefully will be discharged by early Wednesday afternoon. We've worked our way through two of the DVD's I've brought from home so I only have three left as well as the leapster games to get us through. If we exhaust all of those I can resort to song and dance but it's not a pretty picture. He has learned to use the buttons on the bed so that has kept him busy for a good while today. He seems to think it's a ton of fun to go up and down and up and down.
Meanwhile, Noah and Adam are having fun at Camp Nonna and Pappy. It'll take me a week to undo all of that "fun" when they get home. They have a great time none the less and don't miss Jeff or I a bit. It's nice to know they don't mind us going off. As a matter of a fact this morning as I was getting Joshua into the car, they were standing on the front step with suitcases in hand. I tried to hand out a few hugs and kisses but instead I got the "get outta here Mom we've got places to go" look. Such a nice feeling.
Posted by Ami Czorapinski at 8:41 PM
Sunday, July 20, 2008
I would love to have a picture of my three boys. You know, one of those professional, everyone smiling, wall portraits. I have always dreamed of having one of those. I have one of the three of them from when Noah was 24 months and the twins were 4 months old. It's a beautiful photo. I just wish I had a recent one. Today was going to be the day.
Well, that was my plan. I prepped the boys. I talked about the camera lady and what funny words we were going to say. Donkey, turkey, and puppy, were the words of choice. The boys laughed and practiced. Then we walked into Sears.
Joshua promptly stated that he would not be a willing participant in this plan. Now, he started crying, screaming "not me," and throwing what I like to call a three year old fit. We can stick needles in his legs and chest. We can give him a ton of medicines each night. We can tie him down to a hospital bed for days on end, but don't EVER try to take a professional photo. We are horrible people.
So, I got individual pictures of Noah and Adam. Not the plan but I'll take what I can get. Now the plan is to buy myself some backdrops and a new camera. I'll get that group shot one way or another!
Oh, and for those of you that have contacted me and are having trouble posting comments, just click on the comments button for the post. Then choose the Name/URL button and just write your name. We'll be back in the hospital starting tomorrow for three days worth of chemo. Please keep Joshua in your prayers as it's another hefty dose.
Posted by Ami Czorapinski at 8:45 PM
Wednesday, July 16, 2008
But this time they reside with Noah. Last night he started to run a fever. I didn't think too much of it, gave him some tylenol and went to bed. This morning he seemed fine but around noon his fever was back. As luck would have it, I had already had a well child visit scheduled for Adam so I took Noah along and "Dr. Carol" squeezed him in for me. Turns out the poor child has a sore throat as well as an ear infection. Wonderful. More meds or the medicine cabinet. I swear our family is paying for our doctor's children's college education.
Adam's well visit went great. He is average for height which I find hard to believe because he seems so tall, and he is only in the 5th percentile for weight. That's remained constant for him so nothing to worry about. He's just a skinny kid. Doesn't take after his momma! The boys are exempt from any of the shots they need since Joshua can not be around any live viruses. I had hoped that the delay in immunizations wouldn't effect Noah but since Joshua relapsed it will. All the shots you need to start school will have to be put on hold for him as well as the twins until Joshua is out of treatment a good 6 months to a year.
I hope everyone's summer is going well and that you are enjoying some family time. I can't believe it is already the middle of July. I have to be honest though and say that I am looking forward to fall. It's my favorite season and always seems to put us back into routine. I live for routine. It's that type A personality thing.
Posted by Ami Czorapinski at 8:58 PM
Tuesday, July 15, 2008
So Joshua's white blood cell count was only 190 this past Thursday. Today it was over 187,000. It's amazing how his little body can recover. I only wish my body would recover that fast. His platelets are still on the low side but he is making them himself and they should increase over the next few days. Just in time for a chemo admission on Monday where we'll knock everything out of him again. He is just happy that we didn't have to do the "pokies" in the legs tonight. I hate to tell him that we'll start them up again next Thursday.
Adam and Noah are once again having a sleep over. I have found that it keeps the boys out of our bed so they get no arguements from me. Hey if they want to sleep on the floor every night until the teenage years, I'm fine with it. Joshua on the other hand figured things out as soon as I turned off the lights and promply headed toward Mommy and Daddy's bed. Oh well.
Check out the new slideshow to the right. Jeff had to give me a little help since all this blog stuff, or should I say technology, is out of my scope of understanding. I just want to tell it what to do and have it done. Jeff say's technology doesn't work that way. No wonder I don't like it! This site is a work in progress but I hope to keep adding improvments. Also, I put a link to get updates to the right as well. At least I think that's what it's supposed to do...
Posted by Ami Czorapinski at 10:30 PM
Monday, July 14, 2008
There is an ongoing conversation in our house. It took forever for Noah to learn to say Czorapinski. For those of you that don't know us personaly, you pronounce it Zora-pin-ski. He was Noah Pinski for the longest time. Adam and Joshua even know him as Noah Czorapinski on occassion. But ask Adam if he is Adam Czorapinski or Adam Pinski even and you will get a NO. He is Adam, the boy.
Tonight the boys were putting away their shoes. I have three bins by the front door and each is labeled with one of their names. Adam was reading the labels tonight. We got a Noah Czorapinski, finally an Adam Czorapinski, but just a Joshua. When I asked if it was Joshua Czorapinki he said, "No. Just Joshua." Then, Joshua decides to have a conversation and explain that he is a Czorapinski too. He said "I am Joshua Czorapinski. I am not Joshua, the boy!" This could go on for years.
Now try to ask Adam and Joshua if they are twins. You'll get an even bigger laugh out of that one.
Oh, and was that enough Czorapinski's for you? :-)
Posted by Ami Czorapinski at 8:27 PM
Saturday, July 12, 2008
Last night around 2 am Joshua decided to start with one of his neutropenic fevers. 100.4 is the magic number that sends us to the hospital. He hoovered around that number for most of the night but never hit it. I think God was smiling on us because I was soooo tired. Today he seems to be fine so hopefully we are past the low point.
Adam on the other hand is still struggling with his allergies. I couldn't figure out why his allergies were acting up. Then it struck me. The last time I went to the pharmacy they didn't have the brand name Zyrtec. So I went with the generic because they always say that is the same. Well, I guess not. It usually takes a week to get any of that med into or out of his system. It's been about a week of generic Zyrtec. You see where I'm going with this right? Benedryl to the rescue.
And Noah is a happy little guy. We went out and bought his first real soccer ball and soccer cleats. He's walking on air right about now and can't wait for soccer to start.
Posted by Ami Czorapinski at 8:06 PM
Friday, July 11, 2008
I was a proud momma. Yes, I had the camera and was snapping away. Joshua recieved an award and got to ring the bell as he crossed the finish line. No, he wasn't running a relay or graduating from kindergarten. He was just finishing a little radiation therapy. It's what I like to call kicking some leukemia butt.
Twelve treatments. Twelve times we had to take Joshua into a room, pump chemicals into him to make him fall asleep and then send radiation into his boy parts. These past two weeks we took away his ability to father children and produce hormones that will make him a man and yet we gave him his life back. I know we have two years of chemo to go. But I look at the situation as the cancer cells came back in his testies and that is where we were going to kick them out forever. The chemo in my mind is just going to make sure they don't come back and to get any strays. Overall, Joshua completed this phase with the same attitude and endurance that he always does. He is currently laying on top of Adam and wrestling with him. Gotta love that child. Here's to getting through all the upcoming chemo with that same attitude.
As far as counts, Joshua's are still really low. We are praying that we can escape the dreaded fever. I would love to be able to spend some time at home with the boys this weekend. Adam seems to have caught a cold or is having a battle with his allergies yet again. Hard to tell. Noah is passed out on the sofa as he has had some very busy days in the hot summer sun. I'm looking forward to September when we can hopefully get all three boys on some sort of a schedule. Even though our schedule is always changing and subject to change, I like to keep the boys as close to routine as possible. It helps with the oh so pleasant attitudes.
Well, gotta finish this post. I hear the twins locking themselves in the bathroom. Bad idea...
Posted by Ami Czorapinski at 4:14 PM