Heaven gained the face of a beautiful child yesterday. Henry Scheck earned his angel wings yesterday morning after a battle with Medulloblastoma . Our family had the honor of meeting Henry when both he and Joshua were receiving radiation this past summer. He loved to watch Curious George while he was awaiting his turn for radiation. Once he woke up from the anesthesia, his dad Bryan would have a pop tart ready to eat. Henry was a true hero and was loved by so many. I ask that you please keep his parents and his two sisters in your prayers as they learn to live life without their precious Henry.
Thursday, February 26, 2009
Tuesday, February 24, 2009
I plan to write a book one day. I'm not sure if it will ever be published, stay a fantasy or come to life on some bookstore shelf, but there's a book here people. As a child, I wanted to write children's books. I still love to read stories to the kids and how hard can it be to write a 10 to 20 page book right? You know, Mr. Wizzle goes to School or My Mommy is a Monster. Great book titles don't you think?
But times are different for me know. Life isn't as easy or relaxed as I had planned it. My plan was to have perfect kids and a stress free, margarita filled, warm weather, relaxed life. Reality is WAY more stressed and let's just say it's been a while since I had a margarita, and the kids... My new book ideas aren't the fun and carefree creatures I pictured as a child. My new book ideas involve telling a story of a life bombed by cancer. A story of balancing life when life is so out of balance. But who am I kidding. Me write a book about something serious. I'm not that kind of person. I learned to write in a journalistic style so I can't draw things out for the drama. I'm a "get the facts on the paper" person thanks to many journalism and PR classes. My 20 page senior term paper in high school only got a 98% because I was 2 pages short. So a whole book on a serious subject. Funny.
But I had a brainstorm of an idea the other day and I just know that my idea is good. It's the kind of book that would make me grab it in the store and think "I want to read that." Would anyone else? I'm not so sure, but I sure would. When times are stressful, and this cancer thing has us down, we laugh. I have laughed at things that people on the outside world (outside of cancer that is) would think was sick. I've laughed at jokes about radiation to Joshua's testicles (see I told you sick). I've laughed at my kid as his hair grows back from chemo and he looks like a drowned rat. It's how WE get through this ordeal. It's not pretty but the humor in the situation is what WE choose to see and how WE deal. So what do you think my new book would be called? What am I going to write about the life of a family dealing with childhood cancer?
How about "My Cancer Kid Needs a Diet."
Posted by Ami Czorapinski at 10:54 AM
Wednesday, February 18, 2009
Strep has hit the house. All of Noah's friends at school have had it so it was only a matter of time. Noah tested positive and as a precaution, the doctor put Adam on an antibiotic as well. We love her. Joshua's doctors up at Hopkins on the other hand wouldn't treat him unless he was positive. The doctor we saw in clinic yesterday decided that his throat looked fine so there was no need for a strep test. After talking it over with Jeff, we felt as if we should be proactive with this so we contacted his fellow. She wouldn't treat unless we had a strep test done and she wanted me to take him to the pediatrician's office. Good. We'll expose him to flu, strep or whatever else is sitting in the waiting room. Sounds smart to me. I wrote back to her making sure she wanted me to do that and since she didn't get back to me until after the office was closed, I was stuck taking Joshua to the Nighttime Pediatrics place. I pull up and there is no one there. Yeah, I can do this without freaking out. Well in the time we are sitting there 5 people that are all coughing and hacking come in and sit down. I am having a germ freak out at this point. We finally get taken back and I tell our story to the doctor who does a rapid strep test. Of course it comes back negative. Great. Great because he doesn't have it but great because now his doctor won't let us treat as a precaution.
In the meantime, Jeff has called Joshua's attending. We have decided we need to go straight to the top with all of the mess that has been going on with Joshua's treatment. Today, the attending finally got back to me and he has decided that he is in agreement with us and would like to treat him until he goes into the hospital for chemo on Monday. His comment was that we "need to prevent a fever and even more a delay in chemo so that we can finish this and get on with our lives." Amen to that.
So here I am thinking that we just can't seem to win. We have to fight for everything and then when we do get something to go right, I'm left wondering what's next. That's when I got the phone call.
Noah's school has been holding some raffles for it's upcoming Spring Gala. One of the raffles was for an overnight stay at the hotel where the Gala will be held on the night of the Gala. Guess who won! Yep. Us. WE SO NEED IT. I call Jeff and tell him. At first he doesn't believe me and then he asks the question that I'm already thinking of. "Where does that fall with Joshua's schedule?" By my calculations it could be a high chance of fever time. Ahhh. We'll just have to wait and see.
Posted by Ami Czorapinski at 2:34 PM
Friday, February 13, 2009
Wow what a day. I just don't even know how to tell you about the frustration, anger and yet laughable day we had yesterday. Mostly, it was a bad day for Jeff. I really felt bad for him as he just couldn't seem to get anything right. Let me start by saying that we recently ordered three new cabinets for our kitchen. We also borrowed my Dad's truck in order to pick up this cabinets.
So here it goes. A flashback of the day.
8 am - Jeff's on his way to work in my Dad's truck as he plans to pick up the cabinets on his way home from work. He realizes he has forgotten his badge.
8:30 am - Jeff calls to see when I'm leaving with Joshua to head to Hopkins. He decides he's going to just go pick up the cabinets and bring them home before work so that he can get his badge.
9:15 am - Somewhere in the 40 feet across the parking lot and into the lumber store, Jeff loses the keys to the truck. He searches. They are NO where to be found.
9:40 am - I arrive at the store on the way to Hopkins to help Jeff look. Can't find them. They have just disappeared.
10:00 am - Jeff has to call his Dad who is at our house with Adam and get him to come pick him up so that he can come home and grab his truck. Then he has to drive another half hour to my Dad's shop in order to pick up another set of key.
11:15 am - Jeff heads up to my parents for the extra set of keys.
11:45 am - Jeff turns on the road to my Dad's shop and realizes his truck is sluggish. Code for he's out of gas.
12:00 pm - Jeff coasts into the shop. Luckily Dad has gas tanks right there. He has to beg the secretary for gas.
12:30 pm - Jeff's on his way back home.
1:00 pm - Jeff arrives home. He realizes that my van has to go in to the shop today and needs to be dropped off at some point. In order to save a trip (haha) he drives the van to Annapolis and then his Dad picks him up to take him back to my Dad's truck.
2:00 pm - Jeff has finally started the truck and is now headed back home as he has decided he needs to come home before something really bad happens.
So poor Jeff. Hopefully he had fulfilled his bad day quota for a while. Meanwhile, I'm up at Hopkins where the doctors tell me Joshua is due for chemo next week. By my calculations, he's not due until the week after. I finally come home and look back in my notes as well as contact his actual doctor and yes, I'm right. Great. If I weren't on top of things, the "best hospital" would have made a mistake and treated my child too early.
In the end, these are small matters. Okay so maybe not the hospital making yet another mistake, but the truck issue and the bad day are all laughable issues. If cancer has taught us anything, it's taught us to take things with a grain of salt and to keep pushing forward. So today, Jeff was up and off to work. And believe me, he had a badge and I think some super glue for those keys!
Posted by Ami Czorapinski at 11:24 AM
Tuesday, February 10, 2009
We made it home on Thursday after being in the hospital for a cold. Yes, the doctors seemed to think that he "may" have pneumonia. The chest x-ray was once again clear and yet we were in the hospital from Monday to Thursday. Sucked. Then, we got home for a little over 24 hours when wouldn't you know it, Joshua started with a fever. Yep. Sucked even more. So back to the hospital on Friday evening. Things seemed to be improving and by Sunday, Joshua actually had an ANC in the 340's. If he didn't get a fever all day the doctors were going to let him go home. Great. The day was going well until around 6 when his temp spiked yet again. More suckage. Monday comes along and I prepare to trade off with Jeff at the hospital. I pack a bag and lug it through the hospital. That's when I find out that Joshua has an ANC of 1800 and since his fever came down and he was fever free we could go home. Of course we had to stay all day to hear that his 4th chest x-ray was once again clear. Surprise! Okay so the being able to come home and the clear x-ray didn't suck but the lugging of the bag really did.
So we're home. Hopefully until the 24th when he's scheduled to go back for 4 days worth of chemo. It would be nice to have my family all in one place. It would be nice to eat good food rather than the junk at the hospital. It would be nice to actually feel like I have a husband rather than someone I share babysitting duties with. At least for two weeks. Is that too much to ask?
Posted by Ami Czorapinski at 1:53 PM
Wednesday, February 4, 2009
I feel better. I just needed to get that out. This week has been a disaster to say the least. On Monday, I called up to Hopkins because Joshua was pale and had lots of bruises on his legs. I just knew that his platelet and blood counts were low so they told me to bring him in. We get in and labs are drawn. Sure enough, his levels are very low but not at that dangerous he needs an infusion level. It was only the dangerous don't let him fall down or bump anything level. Yeah. Like that is going to work for a three year old with brothers. I live in a constant three ring circus people. Ain't nothing I do gonna stop them from fighting/hitting/running/jumping/being boys. So here I think we've come up to Baltimore for nothing. Wrong.
The doctors decided that the cough that he has had for the past few weeks is now something to worry about. Never mind that it doesn't sound any different to me or the fact that two chest x-rays last week were clear. They wanted another one and since our insurance won't do an x-ray at Hopkins without a pre-auth unless he's inpatient, they decided to bring him in. Once we moved over from the clinic to the hospital, the doctor here says that he doesn't see a difference from last week and wouldn't have put him in the hospital. Great. But since they already started his antibiotic and his ANC is at 0, we have to stay. Even better.
So here we are. Day three. No fevers, Joshua's not hooked up to any machines and we're bored out of our minds. The latest x-ray is clear and his blood cultures are fine. Yet the doctors say we have to stay. Makes a ton of sense to me. I was able to talk them into discontinuing the antibiotic for 24 hours and if he doesn't get a fever they will send us home. I'm the bargaining mama!
And on the home front, Adam has a cold. Noah is going through his emotional "my family isn't all home" stuff and Jeff got a parking ticket today. Thank goodness Jeff's parents have been able to keep Noah and Adam in line while we're stuck here. I think they have gotten a work out over the past few days though. I know the boys have been exhausted.
I'm just tired of all this stuff. If I haven't mentioned it before, cancer sucks. I can't wait for the day that our lives are controlled by this disease. It has stolen so much time, energy, and life from us and so many others. It amazes me how other moms can call out the date that their child took their first steps or got their first tooth. I on the other hand can't remember any of that. I do remember the exact day Joshua was diagnosed or the day he relapsed. I can't shout out weights and heights but I can give you hemoglobin and ANC numbers. This cancer world is so different, so isolated from the outside and so controlling. I'm aiming for the day that I have no idea what my kids ANC is but I do know how tall they are or what they weigh. I guess by then, I'll have no idea where they are past curfew and that will be a whole new set of worries!
Posted by Ami Czorapinski at 4:58 PM