For Crying Out Loud

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!

The Luck of the Draw Ain't No Luck at All!

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.

The week ahead and a bit of history

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!

Happy 4th!

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.

And finally, our little Lulu got her first haircut. She is just so cute!