Anyone who knows me, and I mean Really knows me, knows that I love me some Peanuts at Christmas. Not the nut kind but the Snoopy, Charlie Brown, Linus kind. My favorite part in the Charlie Brown Christmas movie is when Linus stands on the stage and tells everyone the true meaning of Christmas. It truly is "what Christmas is all about."
Monday, December 21, 2009
Posted by Ami Czorapinski at 1:52 PM
Thursday, December 3, 2009
is time. First, let me apologize for not updating this blog often. I also want to apologize as I don't know if I will ever get to finish telling you all about our wonderful, exhausting, adventurous, amazing Make-A-Wish trip. I just too bloody tired.
Posted by Ami Czorapinski at 3:17 PM
Monday, November 23, 2009
So we arrive at GKTW and are instantly taken to a different world. The volunteers there gave the boys t-shirts as well as their second stuffed animals which were a Mickey for Joshua and mini Shamu's for Adam and Noah. We were given a quick intro to the village and then directed to Katie's Kitchen for lunch. All the food at Katie's Kitchen is donated by Boston Market. Talk about good stuff! After lunch, we were driven to our villa in a golf cart. The boys thought this was cool. The villa was much more than anyone could have asked for. It was a two bedroom, two bath villa with all the amenities of home. The first thing you need to know about GKTW is that no money ever changes hands there. The place is run on about 3 to 5,000 volunteers as well as a few paid employees. The second thing is that everything is there for the kids. The villa's are set up so that the kids bedroom has a HUGE bathroom attached with a whirlpool bathtub and walk in shower. The adult bedroom doesn't have a bathroom. Our bathroom was in the hall and very tiny. Very fitting.
Posted by Ami Czorapinski at 8:51 PM
Sunday, November 22, 2009
So I'm finally getting around to posting about our trip. Here it goes...
Posted by Ami Czorapinski at 9:28 PM
Thursday, November 19, 2009
Posted by Ami Czorapinski at 9:26 PM
Sunday, November 15, 2009
I have a ton to write about but we are still recovering from a wonderful week. I promise to post pics and tell you all about our trip at some point this week.
Posted by Ami Czorapinski at 8:20 PM
Thursday, November 5, 2009
I just received our itinerary from Make-A-Wish. Forget the kids, I'm SOOOO excited. Being a Disney fanatic, I was so glad that Joshua chose Disney as his wish. I won't spoil all of the exciting things they have planned for us just yet as I barely know half of them myself, but we leave at 5:30 am on Saturday to head for the airport. I will try to update the blog every day with a picture or two so if you're interested, check back daily! Orlando, here we come!
Posted by Ami Czorapinski at 1:18 PM
Friday, October 23, 2009
Posted by Ami Czorapinski at 5:43 PM
Thursday, October 8, 2009
Finally a family portrait. When we were at the beach with the Believe in Tomorrow Foundation, they provided a beach portrait session for our family with John Mick Photography. Here are some of the results. Enjoy.
Posted by Ami Czorapinski at 6:51 PM
Thursday, October 1, 2009
It's been a while since I updated this blog. Life is going by at such a fast pace these days. Between taking Joshua to Hopkins, getting the boys to school, cleaning the house, and all the other odds and ends of life, I've been too exhausted to write. But tonight, I made it a point to sit down and do just that.
Posted by Ami Czorapinski at 8:48 PM
Tuesday, September 15, 2009
Things in the Czorapinski house are going well. You don't see that statement too often on here but I have to say that it's the truth. Adam and Joshua LOVE school. As a matter of fact, I went to pick them up the other day and the teacher only brought out Adam. When I said, "aren't you missing one" she said that Joshua had decided he didn't want to leave school. Funny kid. They are enjoying school and socializing so much that it brings tears to my eyes. It's the little things in life that most people take for granted that mean so much to our family.
Posted by Ami Czorapinski at 7:07 PM
Wednesday, September 9, 2009
Posted by Ami Czorapinski at 11:54 AM
Monday, September 7, 2009
Tomorrow is the day. It's the day that Adam and Joshua will go off to school for the very first time. Pre-K. I am sitting here tonight and thinking that for the past four years, I've had these boys by my side. Every day for the most part and tomorrow, they go off and start school. Of course I'm worried about germs and sickness and all the yuck that they will bring home. I know that we'll have to spend a few days at Hotel Hopkins because Joshua picked up something at school. But, they need to go. Adam has been held back and has waited to go to school. Joshua needs to go off and learn that mommy isn't always there. And well, Mommy needs to learn what to do with the next chapter in life. I've always thought about what to do when we get past the cancer stuff. I have ideas and thoughts but cancer has consumed so much of my life that I've never got past the "day dreaming" part. The reality is that life is going on with the cancer or without it and the kids going to school is a part of that. The boys have their plan and now I have to figure out mine. Of course that's after I catch up on what's been put aside for the past four years!
Posted by Ami Czorapinski at 9:01 PM
Monday, August 31, 2009
Posted by Ami Czorapinski at 3:04 PM
Wednesday, August 26, 2009
We made it back. I can't say enough about how wonderful the Believe in Tomorrow Foundation is at helping cancer families make memories. We had such a wonderful week. Although we've been to Ocean City a million times, this time was most definitely different. The boys loved every minute of the trip and for once we actually felt normal. It was just so nice.
Posted by Ami Czorapinski at 8:50 AM
Thursday, August 20, 2009
Posted by Ami Czorapinski at 7:57 AM
Monday, August 17, 2009
We're on vacation. Yes, vacation. And we're ready for a fun filled week. Today, Jeff and I have to take Joshua for a blood draw but after that, we're going to forget (as best as any cancer parent can) about the cancer and sickness and hospitals and enjoy the beach.
Posted by Ami Czorapinski at 8:47 AM
Friday, August 14, 2009
The cast is off and we're off to the beach for a week! I'll try to download pictures and update while we're there but with three boys I can't guarantee anything. Wish us luck!!!
Posted by Ami Czorapinski at 10:31 PM
Thursday, August 13, 2009
Today is Dairy Queen's miracle treat day. With every purchase of one of their delicious blizzards, a portion of the proceeds will go to support Children's Miracle Network hospitals like Johns Hopkins. What could be better than eating a blizzard and knowing that with each calorie loaded bite, you're helping sick kids like our boy Joshua! Now that's a reason to celebrate. I might just have to go twice today ;-).
Posted by Ami Czorapinski at 7:44 AM
Friday, August 7, 2009
I swear it never ends. I haven't updated because Joshua has been attached to my hip. He had a really difficult time with his most recent chemo/steroids. He lost some of his hair again so Jeff and I decided to give a buzz cut. He had severe back pain that required oxycodone for about 4 days and gained 6 pounds in a week. But that's not the worst of it. He didn't make counts on Tuesday for his spinal tap to start maintenance. That's good as it will give him a much needed break but it does make us have to move our Disney trip. So that countdown clock in the side bar will be changing as soon as I get a new date (sorry Tylar). Also, yesterday Joshua fell down the steps and hurt his broken arm. That resulted in a x-ray. The stupid ortho doctors at Hopkins didn't even want to see him until his scheduled appointment on Monday. Taking it upon ourselves, Jeff and I got him an appointment to see the "second opinion" doctor and he was able to cut the cast in case of swelling. He said the x-ray still looked good although the bones have never been even close to straight or even together for that point. Today, the arm is swollen so it's a good thing I did take him to another doctor. He's still in a little pain so we're back to the pain meds. It's never ending.
Posted by Ami Czorapinski at 2:54 PM
Tuesday, July 28, 2009
Chemo stinks. I've said it before but it really does. You know what stinks even more? Cancer. And you know what stinks even more than that? When kids have cancer.
Joshua's had a real rough time this month. The steroids and chemo combo are causing LOTS of back and leg pain. So much pain that oxycodone, a tylenol substitute, and even morphine aren't really keeping him comfortable for long. It's tough to watch and even tougher to listen to his cries. As a parent, I just want to make it better. As a human, I can not. Each cry and wimper stab right into my heart. So, lots of prayers have been said this week. Not that I don't say prayers every single day, I've just doubled up this past month. God doesn't give you a prayers cap does he? I sure hope not.
As for the results of everything else that is the Czorapinski's, we got a second opinion on Joshua's arm. The doctor said that while yes it is very crooked, it will straighten out. Guess we'll pray about that one and let God go to work. And speaking of praying, Jeff and I are praying for guidance as to what to do with Noah and kindergarten. We have toured one of the Christian schools here on the island and tomorrow we'll check out the other one. We aren't sure that Noah will go to one of those over the public school, but we're exploring all of the options. We're praying that God will guide us toward the right place for Noah.
But that's enough about us. Right now there are a few other families out there that could use your prayers. A childhood friend of mine needs prayers for her son Clark. He's had a rough start in life and right now they aren't sure what's going on with a spot that has shown up on a MRI. Please say a little prayer for Clark. Also, another friend of mine is in need. Her husband is in need of a kidney transplant. Right now, no one in their family is a match. If you are blood type O positive and would be willing to be tested, contact me. If you could please say a prayer that everything will work out for Mike, I would appreciate it.
And finally, for those pictures I've been promising you all. Enjoy!
Posted by Ami Czorapinski at 7:49 PM
Thursday, July 23, 2009
I haven't updated this blog in a while. I've been meaning to, I swear. It's just that when I finally have a spare moment between doctors, kids, summer, stress, I don't feel like doing much of anything. Today, I have finally found enough energy to write a little.
What's been going on in our house? Let's see. Noah's meeting with the surgeon went well. While the doctor doesn't think that it's a tumor, (why do I hear Arnold saying "it's not a tumor" every time I make that comment) he doesn't quite know what the knot on the back of his leg is and therefore we will do surgery sometime in the next month or so to have it removed. More stress.
Noah was also assigned his teacher for the upcoming year. There are 4 kindergarten teachers at his school. I hear that two are wonderful, one is strict but loving and one is a 58 year old that has quite a reputation of being "very strict." Wanna guess which teach Noah got? Yep. I was okay with strict as I believe that a teacher needs to be disciplined yet understanding. But, recently I have heard more stories about her and if they are true, we're going to have problems. Noah is a very unique child that has had a very rough 6 years of life. Jeff and I are now weighing our options. Now please don't send me an e-mail telling me about speaking to the principal and trying to get him changed. It seems that EVERY other kindergarten parent has tried that and I'm sure there isn't any where to move him to. More stress.
Now on to Joshua. He's doing well. Okay so not really but in the big picture of cancer life, he's doing well. He has had a rough time with chemo these past few weeks. He has cried with back pain, leg pain, and headaches. He has been so lethargic that he couldn't keep his eyes open and would take 3-4 naps a day. While on steroids. Fun times. This week. His ANC is a whopping 270 so we're at risk for random fevers that could put us in the hospital for a few days. He also resumes steroids today and well, there goes the mortgage payment at the grocery store. Last week, his lunch would consist of 20 chicken nuggets, fries and then he would be talking about what he wanted when he finished that. For Christmas I swear I could buy him gift cards for Happy Meals and he'd be in heaven! As far as his broken arm goes, that's a whole different story. Last Friday we went for his follow up visit to orthopedics. First, I had to talk the doctor into changing his cast to a waterproof one. I was able to win that battle but the bad news is that Joshua's arm is REALLY crooked. The doctor said it "wasn't good, but not horrible." Great. We love crooked arms. Anyway, oncology seems to think that they can do better and so we're going on Monday to a new doctor for a second opinion. We're taking the chance that they will actually want to deal with an oncology kid that would have to be put under to have his arm rebroken and fixed. We'll have to see about that one. More stress.
And Adam. I don't write about Adam much. Adam is our child that just goes with the flow. He has very few medical problems, is smart as a whip and is just an easy child. Thank God he gave me at least one. Adam is enjoying summer. He's been to the pool a few times and has already begun to put his head under. He's ready for school to start and can't wait to use his new backpack. Jeff says that Adam is our child that would join the Navy seals just because he was bored. I have to agree.
So that's your little dose of Czorapinski life for now. Not always pretty but an adventure for sure! Oh, and I have some great pictures of the kids from this summer. Of course, they are on Jeff's phone as I always forget my camera and I can't upload them yet. But I will. SOON.
Posted by Ami Czorapinski at 3:48 PM
Monday, July 13, 2009
We have quite a bit going on this week. Today, our Noah started his first day at summer day camp. My baby is growing up. He left me without thinking twice, talked all about going to "the yellow school," which is where he will go in the fall and is where camp is housed, and yet he held his little brothers hands as they we walked into camp. They say time flies when you're having fun but it also flies when one of your other children has cancer and you spend so much time focused on that matter that you forget to watch your other children grow.
This week brings us to another week of chemo, an ortho appointment, and an infusion of antibodies that resulted in a severe reaction last time, for Joshua. It brings a dentist appointment for me, a vet appointment for Lulu and an appointment with a surgeon for Noah.
As far as Joshua goes, he started his new phase of chemo this past week. This brings a month of steroids. So far, he's been a little clingy, moody and VERY tired. A small reminder that he's still in treatment and that chemo is tough on his little body. We're almost there though. Right?
Noah, on the other hand, has had a bump develop on the back of his leg. Jeff and I have watched this knot for a few months. We've taken him to the doctor and finally, we had an x-ray done. That x-ray told us that it isn't a foreign object but nothing more. Our pediatrician recommended we see a pediatric surgeon to have it removed and put this to rest. For most parents, this would be a minor bump. But, when you're surrounded by kids with tumors every day, your mind goes places it shouldn't. Tomorrow, we take Noah to Hopkins to see the pediatric surgeon and get his take on this knot. Please pray that it's just a build up of fatty tissue or something little and not anything major. For our family, minor is usually major and we need to break the trend here.
Our back story is very long. Jeff and I have three kids and with each child we've been given a miracle. Yes, all children are miracles but our miracles are very unique. Noah was born by emergency c-section in October 2003. I had a very normal pregnancy and when my water broke, I went to the hospital. After being monitored for only 45 minutes, I was rushed to the OR when Noah was delivered in minutes. As I'm laying on the table my doctor says "I've never seen that before." Now that is NOT what you want to hear your doctor say when your stomach is cut open and she's delivering your first born. It seems that I had a condition called velamentous insertion of the umbilical cord and vasa previa. You can look it up if you want but the mortality rate for infants is 75 to 100%. Miracle huh.
Next, Noah had a very large hole in his heart. We had to see a cardiologist up until he was 6 months old when the hole closed on its own. Another miracle. Noah has seen neurologist Ben Carson, he's seen therapist at Hopkins for flattening of his head as an infant, and has an expressive speech delay for which he's seen speech pathologist. It's been an adventure.
And all of this was before we found out we were having twins. At the 20 week sonogram! Shocking. Then, to have one of our twins have cancer and the other to actually beat it before it began. There are no other reported cases of a twin having cancer cells in his body and then to have them go away. Our doctors are amazed and our story has been feature in journals. We know it's a miracle.
Miracles happen every day. We've been blessed to see them and to recognize them for what they are. God certainly has great plans for our boys. Jeff and I on the other hand are living on borrowed time!
Posted by Ami Czorapinski at 1:19 PM
Friday, July 3, 2009
The fourth of July is one of my favorite holidays. I think because it comes during the summer, it usually involves picnics and friends and of course fireworks. I hope everyone has a safe and enjoyable holiday.
As for the Czorapinski's, we've been busy. Joshua completed his last scheduled hospital chemo admission last week. This means that unless he were to get a fever, all of his chemo for the next year is outpatient. What a big step. I asked little man and he said "no fevers" so I'm holding him to that. While we were inpatient though, we did have some interesting things going on. Orthopedics seemed to think that they didn't like the position of Joshua's arm in his cast. Okay fine. They wanted to recast his arm so finally at 9:30 at night, they send a resident and a P.A. up. Now usually I don't have a problem with this. This resident on the other hand needs a few more lessons in pediatrics. First, she didn't have the right materials for casting. She decided she could "make it work" and went ahead with the new cast anyway. She then proceeded to cut off his old cast with the saw. Now, would you tell a four year old that your going to use a saw on his arm? Me neither. After continuing to use the word saw and freak Joshua out every time, I finally suggested rather loudly that she use words like "loud machine." Her response, "oh right." Anyway, she recasts only to finish and realize that she really should have had the right materials and that she needs to do it again. That's right with the "saw." AHHHHHHHH.
So, cast #3 is on. Joshua didn't get to pick the color or anything and Miss "Saw" woman brought him the exciting color of white. You know because four year old boys look great in white. That thing is sure to be black by the time we go back on the 17th.
Noah has had a big week as well. This past Saturday, he lost not one but both of his front teeth. On the same night. I told him that the tooth fairy gives double for that and after his usual freak out, he went to bed and I was awoken the next morning to a toothless boy holding $5! I think I'll start pulling my teeth for that kind of cash.
As for Adam, he is such a joy. He and Noah had their six month dental appointment this week and while Noah wasn't too thrilled, Adam would have let the dentist do anything. He was so excited with his new toothbrush.
Posted by Ami Czorapinski at 7:40 AM
Monday, June 22, 2009
Posted by Ami Czorapinski at 3:12 PM
Tuesday, June 16, 2009
Posted by Ami Czorapinski at 10:11 AM
Sunday, June 14, 2009
Posted by Ami Czorapinski at 6:51 PM
Tuesday, June 9, 2009
I have a whole post about our day and everything that it involved, but I'm too spent to write tonight. I will post tomorrow. Tonight, I wanted to let you all know about an available opportunity to save a life. If you haven't registered for the bone marrow registry, they they are doing their "marrowthon" right now and you can register for free. There is usually a fee that covers all the testing and such but from June 8-22, you can join for free. PLEASE do this. It's a simple mouth swab that they send you in the mail. You follow the directions and mail it back. Unless/until you are found to be a possible match, you will have nothing else to do. You have the power to possibly save a life. Please do this. If Joshua were to relapse again, we would go to this registry to look for a donor. There are so many people out there right now waiting for a match.
Posted by Ami Czorapinski at 9:52 PM
Monday, June 1, 2009
Joshua's counts are finally starting to go up. Just not enough. His ANC has been at 0 for the past few days and finally today we went to 140. Jeff persuaded the doctors to do another draw around 4 pm and if they are above 200 they'll let us go today. If not, we'll have to wait until tomorrow's labs to see where we stand.
Meanwhile, Jeff and I have been switching off and on at the hospital. We've only been able to see each other for about an hour or so. Noah and Adam have been spending time with grandparents and Lulu isn't quite sure where she lives any more. I can't wait to get home and get back on a schedule. Haven't we done our time yet? I swear that after all our family has been through, we need a month long vacation at the end of this. Although we won't be getting a month long vacation, we do have the beach and Disney to look forward to. Now, all we have to do is get there.
Posted by Ami Czorapinski at 1:42 PM
Thursday, May 28, 2009
For anyone that knows me, you know I like things orderly and neat. Sometimes too neat and God must have known that as he gave me three boys and Jeff. I'm the one who got up every morning in college and made her bed. It irritated my roommates so much that some days they would go into my room and unmake the bed just to get me stirred up. But, over the years I've gotten better about letting things go a little. Yes, I still organize a ton and try to keep things neat but time has gotten slim and the boys are just too much to keep after so things slide. It seems like it's slid a little too much lately though. We're back in the hospital today after another nighttime fever run to the ER. Joshua's counts are beyond low and therefore my plans to get the house in order get pushed further away while the boys plans to destroy it are front and center. I'm hoping that we get out of the hospital by Saturday and I can tackle the clutter all afternoon. It's driving me crazy ;-)
And to add to the chaos that is our lives, we have exciting news. Our family has a new addition. Lulu our 11 week old shih tzu puppy joined us on Sunday. She is such a little sweetie. I would love to add pics right now but I'm on the hospital computer and don't have any with me. I'll post some as soon as I get home because once you see her little face, you're sure to fall in love. The boys are great with her and we are very happy with her. It's been about a year and a half since our last dog disaster and we felt like the boys were finally ready. So far, we've been right. I'll keep you all updated on our little Lulu!
Posted by Ami Czorapinski at 3:54 PM
Thursday, May 14, 2009
Before I write the real post for today, I wanted to let everyone know that the National Institute of Health will be at the golf tournament for Joshua on May 31st swabbing for the bone marrow registry. Even if you aren't planning on coming out to golf, please stop by and get on the registry. It's a simple mouth swab and then you are put on the list. ONLY if you are a match for someone out there will you be contacted for further testing. Please be aware that if our little guy were to ever relapse again, we would go to this registry looking for a match as Noah isn't a match and Adam can't be one (see the last paragraph and link for reasons). There are so many children and adults out there looking for a match. YOU could save a life!!!!! Now...
I always refer to our family as "those" people. You know. The ones who's kids are running through the restaurant and causing a scene. Or the "freaks of nature" that we are with the hospital. But today, I have dealt with the other kind of those people.
Today, as I am driving through a parking lot because the store I needed to go into wasn't open yet, I get a beep from behind me. Now mind you, the signs all say 15 mph. I'm going about 15 mph. This woman in her 60's is riding my bumper. She pulls off and parks. I've had it. I've had it with people walking all over me and my family so I stop in the middle of the street. I put down my window and wait for the woman to get out of her car.
Me: "Did I do something to offend you."
Rude Woman: Ignores my question.
Me: Still sitting there and staring at her.
RW: "Well I'm in quite a bit of a hurry and you were driving rather slow."
Me: "Excuse me but you're supposed to go slow in the parking lot lady."
RW: Rolls her eyes.
Me: "Get a life lady. The store isn't even open."
Then, she walks up and trys the door which won't open. NICE!
Me: "So much for your hurry. Haha!"
Yeah, that's what happens when you piss off a women who has dealt with screaming children all morning.
So I'm enjoying my win with the rude lady when I get home and need to call Acer about my computer. Jeff bought we one of those little netbooks for my birthday back in January. The microphone has never worked and now the speakers aren't working well either. I called them two weeks ago after finally getting around to doing it and after all the "uninstall this, do that" they tell me to call back after I clean it off and reprogram it. When that didn't work, I called today only to have them tell me that I didn't call two weeks ago and to do the same thing they told me two weeks ago and call back. That's it.
ME: "You mean to tell me that I need to do exactly what I've already done and then call you back so that you can tell me I never called in the first place and we'll repeat this cycle."
Guy I can't Understand because he barely speaks English: "yes"
ME: I need to speak to your manager."
GICUBHBSE: "He's on another call right now."
Me: "Well I'll wait. I bought this computer over another brand and you won't even fix it. Your company is not high on my list and your company's customer service sucks."
GICUBHBSE: "Hold on."
After waiting on hold for like 3 minutes he comes back to give me service request number, to apologize for what just happened and gives me an address where I can mail my computer. Then I ask him why I have to pay to ship it to them because it's a hardware problem that it still under warranty. Of course I don't get an answer but I'm not finished with Acer yet.
And finally, we really are those people. As I've mentioned before on here, Joshua and Adam's leukemia story is quite unique. The doctors have learned a great deal from our boys blood. So much so, that they recently wrote an abstract that was published in the journal Blood. IF you read it, please know that I only understand it because I live it and even then, it's very technical! Yep, we're THOSE people!
Posted by Ami Czorapinski at 1:02 PM
Wednesday, May 13, 2009
It's been busy for us lately. Joshua has had numerous doctors appointments and with Noah finishing up Pre-K as well as participating in t-ball, there isn't a lot of time left for updating the blog.
First, Joshua had his GFR test last week and thank God the results came back normal. We'll still keep a close eye on his kidney function but at least now we have numbers to back up the fact that they are clearing everything the way they should be. He was supposed to be admitted for more chemo on Tuesday but his platelets were only at 16 so that delays us a week. We'll go back on Friday to see if he's moving in the right direction and then we'll plan for a Monday admission. He's still getting over this bug he's got. Seems that the paraflu that left for about a week has gotten him down again. We've being doing neb treatments and hopefully he'll be able to kick this soon.
And for the biggest news in the Czorapinski household. Joshua is a potty man!!! When we got home last Wednesday, I put him on the potty and we haven't looked back. I guess he just decided to join in. We know you can't make the kid do anything he doesn't want to. When I told him a few weeks ago that you can't go to Disney World unless you go in the potty, he answered "oh well. I guess you'll just have to go without me." Gotta love that kid.
Hope everyone is enjoying the weather. We sure are! I'll be sure to update soon as Noah has his Pre-K graduation next week and I'm sure to have a ton of pictures to post.
Posted by Ami Czorapinski at 3:51 PM
Tuesday, May 5, 2009
Joshua is finally ready to come home today. His ANC is in the 800's and he's been fever free for over 24 hours. So far, his blood cultures haven't grown anything. This is great. Oh, there's just one small problem. It's Tuesday. Joshua's due his next two chemo doses today. And guess what. Those numbers are good enough for chemo. Great. So before he can come home today, they'll pump him full of two more toxins and then send him on his way. Only for those toxins to tank his counts once again and most likely send us back to the hospital by the weekend. I HATE CANCER!!!!
And just to keep us busy since we have so much free time away from Hopkins, we'll be driving back up tomorrow for his GFR (kidney function) test. Fun times. Summer certainly can't get here quick enough.
Speaking of summer, we got our confirmation yesterday from the Believe in Tomorrow Foundation. We'll be staying in Ocean City from August 16th to the 23rd. We will have a two bedroom, one bath condo that is a short walk to the beach. Thanks to this wonderful organization, we'll be able to have a summer vacation. Then, we will only have about 2 months before we get to go to Disney with Make-A-Wish. Can I just tell you how excited we are for these trips. It's a chance for our family to escape the hold that cancer has on our lives. Of course we can never truly escape as Jeff and I are on pins and needles the entire time and every thought is about germs, fevers, illness and cancer, but we really need a break and these trips just can't come soon enough.
Posted by Ami Czorapinski at 12:04 PM
Sunday, May 3, 2009
It's been quite a weekend. Joshua was finally discharged on Friday morning. We were told that even though his creatinine levels had come back down, because of how much chemo this kid has had, we are going to go through with a GFR test. Basically, they will inject dye into Joshua's port and then do blood draws over a certain period. This test will give us an answer as to how well his kidneys are functioning. After 3 years of chemo there is a good chance that they have been affected in some way.
So, we get home on Friday only to have Joshua's temperature start to rise by Friday evening. He didn't get to the fever point but he was hovering around 99. For Joshua, that is high because he's usually well below 98.6. Jeff and I watched him like a hawk all night. That watching continued as did the temp until I finally called up to Hopkins on Saturday evening. The doctors felt that since he was still active and playing and he didn't have that 101.4 temp, that we could stay home and see what happened. Did I happen to mention that while we were in on Thursday, Joshua started with a cough once again. This cough has progressed by this point and he is now hoarse as well. So, for the second night in a row, we watched the little man closely. He got really sweaty around 10 pm and stayed cool all night. I thought that his body had finally kicked that temp and we were in the clear. WRONG. First thing this morning, Joshua's temp went to 101.8 and we were on our way to our home away from home. I swear I sleep more on the pull out couch at Hopkins than I do in my own bed.
Well, once Jeff got Joshua to the Hopkins ER, they did yet another chest x-ray and started antibiotics. His blood pressure dipped a little and they added yet a second antibiotic. I will note that his creatitine levels were back to normal today so that is promising on that part. His ANC was 1700 when we were admitted on Tuesday. The chemo he got shouldn't have dropped it much and not by this point anyway, but today his ANC was 240.
So here we are. We're in again with no idea of when we'll get out. I swear I'm sending my next mortgage payment to Johns Hopkins rather than the bank!
Posted by Ami Czorapinski at 6:55 PM
Wednesday, April 29, 2009
Chemo stinks. Cancer stinks. The effects of both really stink. When Joshua was first diagnosed, Jeff and I were given a list of the drugs our child would encounter. Listed along with the names were the side effects. We were told to become familiar with them and then forget most of them. The side effects are awful. They include, hair loss, vomiting, mouth sores, infections and much more. Some of the drugs even list "a new form of cancer" as a side effect. Great. What the papers don't say are the side effects of having three years worth of chemo/antibiotics/drugs can be. They take a huge toll on the body. One thing is that these drugs can effect the kidneys and bladder. Especially the chemo that Joshua got admitted for yesterday. So, when his creatinine levels were elevated yesterday, we had to be admitted for hydration to see if they would come down before we could administer the chemo. The doctors decided to hydrate until midnight and then if the levels were down, we'd go ahead with the chemo. If not, we were looking at a catheter and 24 hour urine analysis. Fun times. So, after a ton of fluids as well as multiple diaper changes, I'm happy to say that the levels went down enough that the doctors felt we could go ahead. Thank goodness. I may have yet a few more gray hairs but we are back on track and the "yellow crap" is now being pumped in. We should be able to get out of here by sometime on Friday.
I also wanted to share our exciting news with you all. This past weekend, we got our confirmed dates for Joshua's Make-A-Wish trip to Disney! We will be traveling to the sunshine state at the beginning of October. We are scheduled for Oct. 10-17th and I don't know who is more excited, the kids or Jeff and I. Be advised that I will be posting more about our excitement as well as the details as the trip gets closer. Just start praying now for "healthy" kids and sunny weather!
Posted by Ami Czorapinski at 12:01 PM
Monday, April 27, 2009
Oh man what a weekend. With the heat wave we're having right now, it feels more like July rather than April. Saturday we had our second t-ball game of the season. Let's just say that it didn't go quite as well as the first game. Mr. Noah decided to revert to his shy "i'm not going to do it" self. Momma was having none of that so I put the heat on. In front of everyone. From both teams. In a loud, Ami kind of way. Yeah, Mother of the Year right here people. Anyway, after I threaten Noah that I was going to put a diaper on him and make him wear it around, he got his act together and enjoyed the last inning of the game. Smiling from ear to ear and giving his team the thumbs up. I swear, the things I have to do as a parent. Of course, this is the child that when I asked him about his little friends at school having "girlfriends" he just smiles. I asked him if he liked any girls and his answer - "Just you Mommy."
On Sunday, we were up and out the door early for the Port 2 Fort race. Thank you to our family and friends, both old and new, who came out to support this cause. Jeff and I are so grateful for the few of you that are always there to support us. It really means a lot. And we had a great time. There were over 1800 people out to participate. Even in the 90 degree heat, we had a really great day. What was really nice was that to end the day, our wonderful neighbors watched the boys so Jeff and I could enjoy a nice dinner together. What a perfect weekend.
Posted by Ami Czorapinski at 3:49 PM
Thursday, April 23, 2009
I feel like that is where we are. Joshua seems to have FINALLY gotten past the paraflu, cough, junk of winter. Of course, we're never sure and as I write this he is sure to start coughing again but I'll tempt fate here. He had his spinal on Tuesday and did great. His counts were beautiful and I feel good about going in this Tuesday for more chemo. We do much better with the after when we start with good counts. I feel like we had a few weeks where his counts were too low to continue with chemo and that is what he needed to get himself back into the game.
Speaking of games, this past weekend our Noah had his very first t-ball game. Those of you that have been following this blog know how things went with soccer so we were holding our breath when it came time to go up to bat. Well wouldn't you know that Noah LOVES t-ball. He thinks batting is "awesome" and likes the action. Outfield isn't his favorite position as he tends to sit down and play with the grass but he's out there. Jeff and I are so proud and I'm hoping that this is the beginning of a long baseball career. You know. The kind of career that will turn him into a relief pitcher that makes millions of dollars for only playing a few innings a month. That kind of career. A momma can have high hopes for her kids right?!
Posted by Ami Czorapinski at 9:44 AM
Friday, April 17, 2009
I wrote this post two years ago on the anniversary of Joshua's original diagnosis. Instead of rewriting what I had already written, I'm reposting with a few word changes to make it appropriate for three years later.
April 17th. It’s a day that is forever ingrained into my mind. I remember my kids birthdays, my wedding day and April 17th. Three years ago today my world changed forever. It is a day that no parent wants to face. It was the day we heard the word Leukemia for the first time and for once it referred to us.
I can remember it as if it were yesterday and then again, it seems as though at least 5 years have gone by. I really can’t tell you how long ago it seems yet it has been 3 years. In case you do not know Joshua’s story, sit back and read as I remember April 17, 2006.
It was the weekend of Easter and we had all noticed Joshua and how yellow he seemed to be. It was funny but it seemed as though he was jaundice so I tried to get him out in the sun that weekend. Easter Sunday came and I just had a feeling in my stomach. I couldn’t explain it but I just knew he was sick. If you know anything about our family, you know that the twins had been sick since birth and had so many sinus problems and allergies that we were always at the doctor. This time, it was different. That Easter Sunday night as I went in to check on Joshua in his crib, I came into Jeff and my bedroom and I said. “Something is wrong Jeff. I don’t know what it is but something is really wrong.” I told Jeff that I was making Joshua a doctor’s appointment for Monday because he was sick. I said “It could be something like cancer.” I don’t know why those words came out of my mouth. Call it mother’s intuition, but deep down I think I knew.
Monday morning came and I got the first appointment of the day. Joshua and I even beat our doctor to the office. Once we got into the exam room “Dr. Carol” as the kids like to call her, came in. She asked what was going on and I explained how Joshua was so pale and he had so many unexplainable bruises on his legs. She took one look and said “oh!” Then, she left the room and came back with a nurse to draw blood. Anyway, the minutes ticked by and when she finally came back in she said that Joshua’s blood counts were off and she wanted us to see a hematologist up at Hopkins. She had already called them and they were expecting us in the emergency room. She explained that they thought it might be ITP which is the body’s response to a virus and the platelet level will drop. I knew it was serious and I lost it in the exam room. Dr. Carol let me get myself together as I called Jeff right then and there. I told him to meet me at the house and we would be headed to Hopkins. I tried not to cry but the tears were rolling down my face.
When we finally got to Hopkins Pediatric Emergency Room, it was about 10:30 in the morning. They called us back immediately and stuck Joshua for an IV. It took them three for four tries before they could get one because his veins were so little. Heck, he was so little. He was three days from turning 10 months old. After they got the IV, they drew some blood and tested it. Then, a team of doctors came in and told us they needed to do a bone marrow test. They told us it could be a number of things and being the straightforward people that we are, we asked if it was leukemia. This was the first time anyone had said that word. The doctors said that was a possibility and that they needed the bone marrow test right away.
They came and took Joshua away from us for about 20-30 minutes. Then, it seemed like hours before the doctors came back themselves. The minute the door opened, we had our answer. A team of four doctors came in to the tiny room and we knew it wasn’t good. The doctors told us that we were finding a room for Joshua up on the Pediatric Oncology floor and that he would start treatment immediately. They told us that he had Acute Lympoblastic Leukemia and that it was a treatable and curable disease. They did not go into great detail. That was for the days and hours to come but at that moment the world stopped spinning and fell apart for our family.
From this moment, everything is a blur. I remember crying and then telling Jeff that we had to be strong. I remember thinking of my Dad and how strong he was during his cancer treatments and I knew I had to be that strong for Joshua. I told Jeff we were going to beat this nasty thing and there was no other option. We stayed in the emergency room until 11:30 that night when they finally got a room for Joshua. We then were taken to what would become our life. Joshua spent the next entire month in the hospital. He was not able to see his brothers during that time. Jeff and I were thrown into a world we never wanted to be in. The next day, Joshua was taken into surgery where his first central line was placed in his chest and the first dose of toxic chemicals was pumped into his tiny body on April 19th, his dad’s twenty ninth birthday.
So my friends, that is the VERY short version of what April 17th means to our family. There have been ups and downs and a lot of life lessons. It has been a time of much learning but most of all, it has been a time of healing. God is healing Joshua and with all of your continued prayers, we will be remembering April 17th years from now and smiling because it was the day that God taught us to slow down and enjoy what he has granted us!
As you all know, our story doesn't end there though. Last year on this exact date, Joshua got his port removed from his chest. It was to be the end of this nightmare. Little did we know, we'd have another port placed a little over a month later and begin the battle again.
Posted by Ami Czorapinski at 10:17 AM
Thursday, April 16, 2009
Okay, so I know this isn't the most inspiring post. It doesn't include a funny story about Czorapinski life but I'll get back to that next week. Right now, I'm getting back to business and it's exhausting!
We finally escaped from the hospital. Joshua was discharged on Tuesday. One week in the hospital and I'm still trying to get caught up on life. Today, we had to make yet another trip to Hopkins for a count check. All is well and we are scheduled for a spinal tap and chemo on Tuesday followed by another admission the following week.
To everyone who has signed up for the Port 2 Fort. Thanks. I look forward to walking with you and having a great time. There is still time to sign up if you are interested. Just follow the link in my Port 2 Fort post.
And for Relay for Life, we would still love to have more team members. If you've never participated, you don't know what you are missing. It's a blast. Think about coming out for one or both of these events. We greatly appreciate the support.
Posted by Ami Czorapinski at 3:08 PM
Sunday, April 12, 2009
The Easter Bunny visted. I told the boys the Easter Bunny was coming last night. They were excited and yet concerned about Joshua. How would he get his basket? How would he know where Joshua was? I told them the Easter Bunny has a way of knowing and that he finds you. And he sure does. Noah and Adam raced down stairs this morning to find not only their baskets but Joshua's sitting here waiting as well. I took pictures and smiled as they got excited over each egg and surprise. But, I couldn't help but think that something was missing.
Joshua is still in the hospital. Looks like it will be at least another day or two before he can come home. But, that's the point. He'll be coming home. This Easter, as my family is split apart and incomplete, I have the comfort of knowing that it is only temporary. I can't help but think of all the families that will forever feel as if something is missing from their holidays. I thank God that Joshua, while he isn't at home, is here. He's recovering and we'll make up for him being away from home next Easter. Happy Easter everyone. Hug your kids a little tighter today and remember the true meaning of Easter. And if you could, please say a little prayer for all of those families that are "missing" someone today.
Posted by Ami Czorapinski at 11:21 AM
Friday, April 10, 2009
**Edited this post because I forgot to add that Joshua has tested positive for para influenza type 3. Basically he has the flu and it can cause respiratory infections and problems so that could be why he has the pneumonia/bronchitis/whatevertheywhattocallit. Looks like we'll be in for the weekend.**
We're still in the hospital. Joshua temperature is still going up and down. The doctors have added yet a third antibiotic so hopefully this will help with whatever he's got going on. Last night he had a weird rash that started on his legs and eventually he had it all over his back and arms as well. The doctors seem to think it's some virus but we'll see. Some benedryl seems to have helped but his face is still red. They are going to culture his next three stools to make sure there is no blood in them. I'm praying that today we see some improvement. The chemo that he got last week is rough and he's at risk of getting infections and bacteria after it takes effect. I hope that his body is able to kick whatever it has going on and that we can get home soon.
Posted by Ami Czorapinski at 7:11 AM
Wednesday, April 8, 2009
Back to Hotel Hopkins. Yesterday was long. Joshua had a clinic appointment for a count check yesterday around 10. His ANC was a big whopping 0 which was expected. He did need "platelips" as Noah would say, so he received a transfusion of those. Meanwhile, I noticed that Joshua was feeling a little warm. He wasn't feverish but I knew that was were we were headed at some point. So, after we finish and make the drive back to the eastern shore, Joshua's temp starts to rise. I had talked to the doctor about his last chest x-ray and it saying he had "resolving viral pneumonia." We decided that since he still sounded yucky we should start an antibiotic. While I go to the pharmacy to get that filled, his temp continues to hover around that magic number. So, for the next hour or two, I just watch his temp closely. Then around 7 pm, his temp hit 101.7 and away we went.
After spending all night in the ER, we finally got a room around 10:30 this morning. Joshua's temp has been fluctuating but is down right now. They are giving him two antibiotics and we are awaiting results from his most recent chest x-ray. (how many of these before they are bad?) So back to Hotel Hopkins to enjoy the fine cuisine and amenities. You can sense the sarcasm there right? My guess is that we'll be here until at least Saturday. We have to wait until his ANC is at least 250and he is fever free for 24 hours. It really stinks but we're where he needs to be right now. This is all part of the treatment and with his counts dropping at least we know that the chemo is working.
Now, on to more of a fun topic. The golf tournament for Joshua is coming along nicely. Thank you so much to John for organizing this and thank you to everyone who is involved in some way or another. They are going to have a silent auction included and John has started the bidding on some faboulous items. Here is an e-mail that John sent to me. These are the items up for bid right now:
1) A professionally guided Eastern Shore Goose Hunt for 4.
Donated by R&R Guide Service. Thank you Pat Reber...one the best and hardest working guides on the Eastern Shore.
You will be taken to a pristine hunting location...all you have to do is actually hit your target :) Your license and required stamps are you responsibility.
The value for this trip is $500.
Minimum bid will be $175...increasing in $20 increments
2) Washington Capitals- An autographed hockey stick from the NHL's best player Alex Ovechkin.
This stick is game used!!!
Minimum bid is $100...increasing in $20 increments
Present bid is $120 CHF
Thank you Joey for all the Capitals items
3) Washington Capitals Autographed hockey pucks by -
#19 Nicklas Backstrom.... Present bid is $50 CHF
#19 Nicklas Backstrom....Present bid is $50 CHF
#52 Mike Green(This puck is still pending)....Present bid is $50 CHF
Coach Bruce Bourdeau....Present bid is $50 CHF
28 Alexander Semin....Present bid is $50 CHF
The Great Olaf Kolzig(Ollie the goalie)....Present bid is $50 CHF
Each puck will come in a trophy case.
Minimum bid will be $40...increasing in $10 increments
*** There is the possibility we wil have an Ovechkin puck very soon***
4) Two Club Level Seats with parking pass to a divisional Redskins Game or other game of your choice outside the division.
Schedule is not out at this point.
The value of this is $560.00.
Minimum bid will be $200...increasing in $20 increments
5) Two tickets for a Ravens Game( game TBD ).
Minimum bid will be $150...increasing in $20 increments.
6) Two night stay in a 2br condo at the one and only Barefoot Resort and Golf in North Myrtle Beach, SC
There are no restrictions...based upon availabilty.
Thank you to the one and only Barbie from Beach Vacations.
Minimum bis is $100...increasing in $20 increments
Present bid is $120
7) 4 Tickets to A non-conference Maryland Men's basketball game w/parking pass.
The value for this is $100.00
Minimum bid is $50....increasing in $10 increments.
Other items may be added periodically.
Please send all bids to me via email(email@example.com) or Facebook. I will update where the bids stand everyday on my Facebook and MySpace sites and
via email for those who request to be updated. Please call with any questions- 240-286-2174
I will also email those who have bid on items to let them know if things have changed.
I will cutoff online bidding one week before the tournament at which point I will ask the highest bidder for their cut off point or
a phone number they can be reached the day of the golf outing.
The items will be offered at the golf tournament
Posted by Ami Czorapinski at 12:41 PM
Monday, April 6, 2009
Just wanted to post a quick message about what we are up to. The Believe in Tomorrow Foundation is an organization that provides numerous things to families going through this cancer ordeal. They have given our family tickets to Disney on Ice as well as the Zoo. This summer, we will travel to Ocean City to stay at one of their houses free of charge. Well, now it's time for us to give back.
On April 26th, "Joshua's Journey" will participate in the Port2Fort race. It's a walk/run 6K and we would love to have all of you join us. There is no obligation to go out and raise money although that is greatly appreciated. We would just love for you to spend the $20 to register and then come out and join us for a fun filled day. The race starts at 9 am and is followed by a post race party. Bring a wagon or stroller and bring the kids along. Can't make it to the event? Then consider sponsoring us through the link at the left or got to http://www.firstgiving.com/believeintomorrow
If you do plan to register, let me know and we will get t-shirts made up that say "Joshua's Journey - Because kids get cancer too!" and we'll all show our support for our little guy. Thanks again to everyone for all of your love and support!
Posted by Ami Czorapinski at 1:05 PM
Tuesday, March 31, 2009
I have so much to talk about in this post, it's going to be a jumbled up mess of info, details and stuff. First I'll start with the info and details. So we finally made it. Well, not actually but we are in the hospital and receiving chemo. You see, even though Joshua's ANC was only at 660 (needs to be 750), we decided to go ahead with treatment. It also seems like Joshua is starting to recover from pneumonia so that may have been the reason his body has been so slow to recover from this last round of chemo. Whatever the case, we forge ahead.
Next, if you are interested in helping out with a great cause, then think about joining us for a golf tournament in Joshua's honor. The tournament will be held on May 31st in Queenstown. Our neighbor John hosts this event for us and it's a ton of fun. We are ever so grateful for all the friends and strangers that come out to support our family. It's completely humbling and we appreciate every effort. Every dime that is raised helps us to cover the costs associated with Joshua's treatment and we can't thank John and everyone involved enough.
Now on to the stuff. I'm going to start with our Noah. We are so proud of him. Yesterday, I had his first parent/teacher conference. This is where it all starts. Pre-K conferences. I go in and am prepared to talk about how Jeff and I are concerned about Noah. We have been thinking that he just isn't picking up on the academics of school. Okay people. We know it's only pre-k but we've noticed that Noah doesn't seem to be able to recall letters or numbers when they are shown to him. Well, to my surprise, his teacher says that he is doing great. She showed me some of his handwriting and I was so impressed. He's copying letters from the board and writing words. He's doing things that I had no idea he was even able to do. That little stinker has been holding out on us and making us worry for months. The one thing his teacher said that he won't participate in is dancing or music which cracks us up because it's one of his favorite things to do at home. And to continue with his make Mommy and Daddy proud moments, he tested for and received his next karate belt yesterday. We have ourselves a karate kid!
Adam. What can I say about this kid except that he is a hoot. Adam is little me. He is an OCD perfectionist with an attitude. Ask him what his name is and he'll promptly tell you. "I'm Adam. A-D-A-M, Adam." He is so excited to turn 4 as he knows that is when life starts for him. We keep telling him that "when you turn 4 you can..." So to turn 4 means he can go to school, try karate, play sports and so on.
Joshua on the other hand could care less. We've told him that there are no diapers for 4 year olds so he's not as excited about turning 4. We haven't really pushed the potty training thing because of the amount of fluid he gets while in the hospital. Joshua is also the kids that doesn't care if he's walking around in a wet or dirty diaper. Jeff says we're going to just have to let him run around naked and then he'll get the idea. Back to the fact that I'm an OCD perfectionist, and this becomes a hard pill for me to swallow. But, there's always grandparents and I'm planning to ship this one off this summer for a week of potty training boot camp with Nonna. Hey, I did two out of three right?
Jeff and I were able to escape for an evening alone this past weekend. Remember that I said we won an overnight stay at the hotel were Noah's school's spring gala was being held. We were really sweating that we wouldn't have the chance to use it because of Joshua's chemo schedule. Anyway, we were able to go and have a great time. They boys were loving life at Bud and Bebe's house. It was "the best sleepover ever." Jeff and I were loving life at the Holiday Inn Express were they guarantee no kids in the bed and a full nights sleep. For those of you with kids who are constantly climbing into bed with you, I highly recommend you book a night soon. We were able to enjoy the gala, have some fun with friends and get a good nights sleep. All were completely overdue and much needed.
And finally, our Czorapinski funny of the week. This past week, we're sitting at dinner. Joshua and Noah were really playing around at the table.
Me: Boys. That's enough sit down and eat your dinner.
Me: Boys. I said sit down before someone gets hurt.
Noah: We know. We know. Joshua has no plate lips!
Out of the mouths of babes!!
Posted by Ami Czorapinski at 2:04 PM