Monday, April 30, 2012

Another Chapter: We Bought a Cake!

It's probably something that someone should never have to buy a cake for.  We wanted to celebrate.  It's not necessarily the end of our journey but it is a milestone that we wanted to celebrate.  To us it's kind of a big deal.

It says "Yay No More AFP Tests!"

Clover got to pick the cake out and she wanted the chocolate chocolate cake with the pretty pretty flowers on it.  I wanted to draw a needle with the big NO sign through it but it would have gotten lost in all the pretty pretty flowers.

Thursday we got the call that her Tumor markers were down.  They have been down for awhile but we were still testing to make sure.  The doctor said last year that we were testing too often to this was the first test we had done in six months.  Since they have been down she said we should stop testing all together.

It is great news and a huge deal for us.

Our little roller coast ride started when my darling Clover was born.    

Every month for the first two years of her life we spent an hour in a lab waiting to get her blood taken.  It was a monthly ritual that I dreaded.  The first time we went to lab at our local Children's hospital only to find out that they didn't take our insurance.  They told us that any of the labs on under our insurance should be able to get her blood taken.  This proved easier said than done.  I went to a lab that said they were capable of taking blood from a newborn.  I held my daughter down as the tech tried to take her blood.  The needle was so large that if she missed she was going to push that thing right through my baby's arm.  She tried four times and then yelled at me because I wasn't holding my screaming baby the way she wanted me too.  I went home and balled.  During our check up with our surgeon I told him about the trouble I was having finding a lab and he told me how important it was to get her tested and then said he would call the insurance for me.  I gave it one more shot and called every lab in the town and asked them if they had specifically pediatric experience.  I found one guy.  He was able to take her blood with one poke and with a much smaller needle.  He was our guy from then on and I would call every month to find out if he was in and if he wasn't in when he would be in.  Once a month I practically stalked him.

When her first test was taken her AFP numbers where in the 400's.  A normal person's is under 35.  They steadily went down until she was ten months where they mysteriously spiked.  They went from 127 to 215.  Our small team jumped into action and scheduled an MRI to look for signs of growth.  Handing my daughter over to the nurses was one of the hardest things we have ever had to do.  We waited for hours in the waiting room.  When we got the call back that there was nothing there we were a bit surprised.  They could never explain the spike in her markers.  We were also a bit taken back when they said that she possibly had a collapsed lung.  At first I stressed out but then staring at daughter I knew she didn't have a collapsed lung because she was very good at letting me know when she wasn't happy.  She has always been a very loud child.  There was no way she wasn't using both of her lungs.  We went back for an X-ray and hearing her yell about putting her down on the X-ray table the tech told me that as loud as she was she probably didn't have a collapsed lung.  I laughed.  I already knew that.  They called back and said that it was probably due to shallow breathing due to the anesthesia.  She was fine.

Before she was three they said that we were testing too often and that we could back down to every three months.  This was good news to me.  It meant that I would only have to stress out every three months instead of twice a month.  Once to go and get her test and then the three days after waiting for the results.

As she got older she become very curious about the blood test.  At one point she told everyone she wanted to be a doctor.  There was one time where she was so interested in what the Phlebotomist was doing that she didn't notice that she was getting poked.  That was the only time she didn't cry.  I think I felt worse.  I felt like had gotten so used to it.  I took her to go and get ice cream because I felt so bad.

We've always been very honest with her about what happened.  She was very curious at a young age to why she had to go to the doctors office and the lab so often.  We told her that she was born with a large tumor on her butt-butt and that she had surgery on the day she was born, and that the blood tests were to make sure that it wasn't coming back.  She seems okay with that explanation.

Last year her numbers were under 18 but would bounce around a bit.  The doctor didn't seemed to worried about it since they were still under 35.  She consulted an Oncologist who said that once again we were testing too often and to wait six months this time.  She also said that if her numbers were still down this next time around that we would be done with testing.  Fast forward to last week where they were down.

There was a big collective "Yaaaaaaaaaaay" and a chocolate chocolate cake with pretty pretty flowers.  I know that this is always going to be something that we have to check up on but it's nice to have it in the background and not having to constantly worry about it.  It's nice to worry about normal kid stuff like making sure the slice of cake she gets isn't TOO large!  Not that it really matters, she only eats the frosting anyways.                


  1. YAAAAAAY!!!!!!!! Im so happy for you guys!

  2. That is awesome news! I am glad she is doing well and that her AFP numbers have been normal for a long time. She is such a precious child :hugs: Congrats Chloe!.

  3. Yea! So glad that it's finally over!