Please Note

I am not a medical professional. I do not have any medical training. I am the mother of a little girl who has been diagnosed with Aniridia, Wilms Tumor, and Kidney Failure. I am writing about my experiences. I am not always going to be accurate with details, but I try to be as accurate as possible. Please do not use this information to diagnose or treat yourself or anyone else. Please consult with a trained medical professional for any treatment or diagnosis.

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Tuesday, May 24, 2011

The First Step ...

Last Friday, Piper had an appointment at Duke for labs and chemotherapy.  Her labs showed her platelet count at 16.  A healthy platelet level is 150+.  This meant that she needed a platelet transfusion.  So, she had chemo, and she got some new platelets!  They wanted us to go back on Monday because her other counts seemed to be dropping.  We went back on Monday morning.  Her counts were down, and she needed a blood transfusion.  The transfusion took over 3 hours.  It was a very long day!  She is feeling good, though.  She has lots of energy, and she is laughing and playing a lot!

Today, we did not have any Dr. appointments.  Today was a very important day, though!  Piper took her first 'solo' step!  It was only one step, and she fell ...  but, she tried!  She took 2 steps and fell this afternoon.  Hopefully soon she will be walking!!!!  I know that she won't have good balance until she is done with chemo, but it is good to see her making progress.

We have an appointment scheduled for this Friday.  This is her last chemotherapy session before surgery!  This will be her 12th week of chemo!  She is a tough little girl, and she has been amazing through it all.  She has a CT scheduled for next Tuesday.  Next week we should know when the surgery will be scheduled.  We expect to have another 6 weeks of chemo after surgery, but they can't tell us for sure until the surgery is complete.

Her ANC is below 500 now, so we are praying that she doesn't have any fevers.  If she gets a fever, we will be admitted to the hospital.  Brian's birthday is Sunday, and we would really like to all be at home to celebrate "Daddy's" birthday!  We praise God for bringing Piper through this, and for providing her with such an amazing spirit!  We know that we still have a long journey ahead, but we also know that we are not alone. We thank you for your continued support and prayers!

Wednesday, May 18, 2011

Wednesday ... play, play, play

Piper has been doing well this week.  She is eating more, and she has been drinking more!  We are very pleased!!  This morning the representative from Gov. Morehead Preschool program came by.  She watched Piper play for about an hour.  She is definitely impressed by how well Piper can see.  Piper is able to see well and focus well.  That is such good news.  Last year at this time, we didn't really know if she would be able to see well or not.  We won't have another session with the preschool program until after Piper's surgery.  We don't want to push too much on her at once.

Piper has her next Dr.'s appointment on Friday.  She is scheduled to have labs drawn and Vincristine.  We hope that her counts will all stay up.  We are expecting for her platelets to be a little low because she is getting bruises on her legs.  Hopefully she won't need a transfusion, though!  We pray that she continues to have the energy and appetite that she has had so far this week.  She is so much fun when she has the energy to play!!!

Saturday, May 14, 2011

A Good Week and Chemo

We have had a good week at home!  Piper has been very energetic, and she has really enjoyed playing on the floor with her big sister.  We had clinic on Friday at Duke.  Her blood counts were all good!  Her ANC was over a thousand, and all of her other counts were up.  This meant that she could receive chemo.  She received all three types on Friday.  We are praying that she handles it well this time.  Typically about 10 - 14 days after she receives all three, her blood counts crash and so does she.  So, we are hoping for her to feel better this time around. 

So far, Piper has not had any noticeable hair loss.  Yesterday, though, I noticed that half of the eyelashes on her left eye are gone.  I hope they grow back as long and pretty as they once were! 

We are scheduled to go back to clinic on Friday.  We hope that we don't have any reason to go back before then.  She is also eating better!!  We are praying that she continues on a good track next week!

Tuesday, May 10, 2011

We Are Home!

The Dr.'s released Piper yesterday.  We arrived home yesterday afternoon, and we had a nice evening with the whole family together (except big brother).  We miss big brother very much, but he will be here soon!

Piper's ANC was only 216, but they felt that she was low risk.  Her counts looked good otherwise, and her ANC appeared to be on the rise.  We are scheduled to go in on Friday for chemo.  We hope that her ANC recovers well this week because it has to be a certain level for her to get her chemo on Friday. 

We hope to have a quiet week.  Thank you for all of the continued prayers and support.

Sunday, May 8, 2011

It's Sunday Again

We were admitted on Sunday of last week.  We are still here.  Every day the Dr.s say "things are looking better", but they still won't let us go home.  The nurse this morning told me that Piper's ANC was zero again, but the Dr. Said it was 140.  That is still not where we need to be.  Some of her other counts dropped today, too.  I am a little worried because she is due for chemo again on Tuesday, and it's her week to get all 3 types!  Every time she gets all 3, we end up back in the hospital about 10 - 14 days later.  Ughhh.  So, no one knows when we will be released.  We have to be patient, and take it day by day.

Saturday, May 7, 2011

Happy Mother's Day

We did not get the news that we were hoping for this morning.  Her ANC was down to zero.  This basically means that her body was not capable of fighting off any infections. So, we are still in the hospital.  We had a good day.  We even had extra guests today.  Grandpa Hughes and Grandma Joann came to visit us!  We walked down to Starbucks for happy hour (half price frappucinos), and we discovered that Piper really likes the strawberries and cream frap.  Grandpa shared his with her! 

Other than the extremely low ANC, she looks great.  All of her other counts look good, and she is happy and energetic!  Hopefully we will experience a miracle tomorrow, and we will get to go home soon!!!!

Happy Mother's Day to all of the moms!

Friday, May 6, 2011

Feeling A Little Anxious

We have to see what Piper's labs look like in the morning to see if we get to go home tomorrow or not.  I'm a bit anxious.  She had a good day.  She ate and drank more today than yesterday.  So now we wait...

Rough Night ...

Piper did not have a great night.  The nurses come in every 4 hours to check her vitals.  The nurse last night did not know how to do it without waking her up each time!  She opened the blinds to let the hall light in... and when Piper stirred, the nurse would TALK to her!  You never TALK to a baby or make eye contact with them if you want them to go back to sleep!  I know she didn't do it intentionally, but that did not make for a good night!  The other nurses do a fabulous job, and they never wake her up.  They can draw blood for labs, check her vitals and even change her diaper without ever waking her!  They're good!!!  ... Irony?!?! ... Their best nurse is a man, and I am fairly certain he does not have any children of his own.  He really loves these kids at Duke, though!

The nurse came in a while ago holding Piper's lab report.  ANC = 36.  Her other counts are going up, though.  Her platelet level is back to an acceptable level, and her WBC count is getting better too.  I doubt they will let us go home until her ANC is at least a few hundred and showing significant signs of improvement.  So, we are stll here!

Hoping that today is a good day for everyone! ...and tomorrow is even better!

Thursday, May 5, 2011

Great Article Describing Why Piper Has To Be Hospitalized

Low White Cell Blood Count - What Does Low White Blood Cell Count Mean in Chemotherapy

This article is informative, but not too confusing.  Unfortunately Piper's ANC this morning was 25.  That's right.  We are down to only 2 digits!  Not good.  :-(

Wednesday, May 4, 2011


We did not receive the best news this morning.  Piper's ANC was down to 129.  She has still been energetic, but a bit irritable.  Her platelets were up a little too, but still not where they need to be.  She did not eat or drink well today at all.  The Dr.s still say we have to just stay here and wait it out until her counts are on the rise.

We have made a few friends during our stay this week.  There are some amazing kids here, and they each have an amazing story.  Surprisingly, they are very happy kids too!  There are a lot of smiling faces walking around these halls dragging their IV pumps behind them.  There is a lot of laughter here too!  It's not a fun atmosphere every day, but God has definitely prepared these kids to deal with what they are facing.

Praying we all sleep well tonight!

Tuesday, May 3, 2011

Still Here

We are still at Duke, and her labs did not come back as good as we hoped this morning.  Her ANC was only 159.  We need that number to be at least 500.  The Dr.s think that her counts will be better tomorrow.  We hope so!  Piper was still in a good mood today,though.  This picture was taken with a really bright flash, but she still has such a beautiful smile!!

Monday, May 2, 2011

Another Day On The 5th Floor

Today was a good day. Piper seemed happy and playful most of the day. Her ANC is down from yesterday, which is not a good thing. Her ANC needs to show that is absolutely on the rise before they will let us go home. She also can't have any fevers or any signs of infection. So, for now, we have no idea how long we will be here this time.

She had a rash appear around her port site today. It appears that there might be a bit of infection there, so she is getting another type of antibiotics. I never knew that so many different types of antibiotics could be required for one person. She has the liquid antibiotic that she gets every week at home. She gets a dose of an antibiotic every time we go to the ER. She gets antibiotics the whole time we are inpatient, but all of these antibiotics must not cover everything.... so we have another new antibiotic for the rash.   ... who knew?!?

She had a clinic appointment scheduled for tomorrow for chemo. She will just get that inpatient. She is only getting Vincristine, so her counts don't have to be up to get it. Hopefully we will get some rest tonight, and we'll have better news in the morning.

Thanks for all of the prayers and support.

Sunday, May 1, 2011

Admitted Again

Piper was a bit grumpy yesterday, and she hasn't been sleeping well for the past few nights. This morning she had a fever of 101.7. That meant a trip to the ER for labs and antibiotics. Her counts were a bit low so we were admitted. We are here for at least 48 hours. She had a blood transfusion, and her temp has been up and down all day. We are praying that her temperature goes down, stays down, and her ANC stays above 500!  If all goes well, she will be released on Tuesday.  She is sleeping now.