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!
Monday, July 13, 2009
The week ahead and a bit of history
Posted by Ami Czorapinski at 1:19 PM
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2 comments:
AMAZING.......
The old saying goes, "God only gives us what we can handle". I don't seem to be able to figure out why in the world he seems to think that you and Jeff can handle all of this, but amazingly enough, I guess you have to. As I do every day and night, continue to pray not only for Joshua's good health, but for the health of all of your boys as well as you and Jeff. Without you being strong and well yourselves, you couldn't carry on. Sending all my love and extremely tight hugs today, I am!!!
Tylar woke up at 11:00pm with an earache from the beach this weekend and it killed me seeing him in such pain. And, in the same thoughts of pitty for his hurting, Joshua comes to mind--and you and Jeff and having to see this every minute of your lives. I admire you Czorapinski's so much!
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