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