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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Friday, April 29, 2011

It's Been A Good Week

We have had a good week so far!  We went to Duke on Tuesday for clinic.  We didn't have to wait for labs since we had them drawn on Monday!  ... so Piper got her chemo and we went home!  Her bruises are healing well, and she has been eating/drinking well.  We discovered that she likes Nilla wafers!!!  She actually eats them!!!  It's the first "solid" food that we have been able to get her to eat!  Our next scheduled appointment is Tuesday morning for labs and chemo.  Hoping the weekend goes well.

Monday, April 25, 2011


We called the Dr. this morning about Piper.  She had a lot of bruises all over her from head to toe, literally!  We had to go in to clinic today at Duke.  They drew labs, and her platelets were very low!  We could tell without the labs, but we had to verify anyway.  Healthy platelet levels should be 150+...  Piper's were 5.  So... she got some new platelets!  We went to the day hospital, and she received a transfusion.  It didn't take long.

Tomorrow we go back to clinic for our regular weekly appointment.  She has another round of chemo tomorrow.  Hopefully her blood counts will start to go up again!

Sunday, April 24, 2011

Happy Easter

Happy Easter everyone.  We hope you are having a blessed day.  Our family is doing well today.  Piper is feeling well, too.  We can definitely tell her platelets are low because she is bruising very easy!!  She woke up with a few bruises, and she has more every hour it seems.  I'll be calling the Dr. tomorrow am to see if we need to go in.  Her energy is still up, and she still seems to be doing well so we are not going to call today.  We don't want them to make us go into the ER on Easter!!  We go back for clinic on Tuesday.  ...week 2 of round 2.  Hopefully we will have a good week!!

Wednesday, April 20, 2011

CT Results, Fevers, and Upset Tummy...

We had a fairly good weekend.  We survived the tornadoes.  We spent some time together at home as a family!  ... and we did not go anywhere near a doctor's office or hospital!!!

On Tuesday, we had our clinic appointment at Duke.  The Dr.'s want Piper to have another 6 weeks of chemo before considering surgery again.  They said that her body seemed to respond very well to the chemo.  The tumors on her left kidney shrunk by 50%.  The tumor on her right kidney, however, was too large to begin with.  They will be removing her right kidney and saving as much of the left kidney as possible.  They think she will really benefit from the additional chemo.  So, we had our 7th week of chemo..........  We went home and the girls took a late afternoon nap.  When Piper woke up, she was very hot!  I took her temp several times, and it reached 101.8.  For her, that is high!  So, we made "the call".  We were told they wanted us to come back to the ER.  So, Piper and I drove back to Durham again!

They are still not able to tell us why she keeps getting these fevers.  They are not able to find any infections, but they keep giving her antibiotics.  We were finally released to come home last night/this morning at 1am.  She is also not feeling well.  She is moving a lot slower than she used to, and she has been vomiting.  We continue to give her the nausea medicine and lots of water/liquids.

Her big sister, Emma (2), has been very loving, though.  When Piper got sick this morning, Emma went over and patted her on the back saying "It's okay sister".  She really loves her little sister.  I think she understands that her little sister is sick, and she really wants to help.

Please pray that Piper's stomach starts feeling better and that she stops getting these unexplained fevers.  Thank you for your continued prayer for Piper.  It means a lot to our family.

Friday, April 15, 2011

Rough Night,.... But We Are At Home!

Last night Piper started moving really slow!  She had no energy, and she started to run a fever...  She hit 100.6, and that meant we had to call the Dr.'s.  They wanted us to come in to the ER to have her checked out.  We packed everything up (prepared incase we were admitted), and headed to the ER.  They drew labs, and gave her antibiotics and more fluids.  We were finally released to come home around 2am.  So, we are still at Home!  Yeah!!!

We are still waiting on the final word from the surgeons regarding her CT results.  They need to determine if they want to move forward with surgery now or continue with another 6 weeks of chemo.  The only thing the surgeons have told us so far is that when they do surgery, we should expect that they will not be able to save her right kidney.  We were prepared to hear that because of the initial diagnosis.  We aren't pleased with that report, but it wasn't a complete surprise!

We are also dealing with a little bit of a pneumonia.  She is on antibiotics for that, and they think it won't be an issue.  She is breathing fine.  They only discovered it when they did the CT.  When we were released, we were given several new prescriptions ... as well as injections to boost her WBC count.  I had to give her 2 shots so far, but the Dr.'s last night said I don't have to do it anymore!!!!  Yeah!!!!  I don't do well with giving shots.  I was definitely not meant to be a nurse!  All of her counts are great at this point, so we continue on the antibiotics.  We have clinic on Tuesday.  She is scheduled to receive another chemo treatment on Tuesday.  Even if we proceed with surgery soon, we can't do surgery for at least 10 days or so....  because of the pneumonia.  Hopefully we will know more on Tuesday!! 

We are still struggling with getting Piper to eat and drink much.  We need to keep her hydrated!  Please pray that she will start eating and drinking better.  If we could solve that problem, I think she would feel much better!!!

So, for now, we enjoy our "normal" life at home as a family!!!!  Hoping for a great weekend together!

Thursday, April 14, 2011


We received quite a surprise last night.  The nurse walked in our room around dinner time....  She said "You're going home!!!"..."Right Now!"!!!!!!!!!!!!!!!!!  We were SO excited!  Piper was well enough to be released.  We packed our things and headed home right away!

We are home, and things are well.  Piper is so happy to be down on the floor playing with her sister!

I will post again later to let you know more information.  Right now we know that she will not have surgery on Friday.  We have our next clinic appt. on Tuesday.  We will find out in the next week if we are going to proceed with surgery soon or continue with another 6 weeks of chemo first.

...  and I have to add that I have an amazing husband.  When we left for the hospital on Saturday, I had just made chicken parmesan for dinner.  The kitchen was a mess!  I was soooo far behind on the laundry, and the house needed some serious attention!  I came home last night, and the laundry was all done.  The kitchen was clean, and the house looked great!  I Love my Husband!

Tuesday, April 12, 2011

Big Day Tomorrow!

Tomorrow at 11 am, Piper has her CT. We are praying for great results. Ultimately, it is the surgeon's decision if we proceed with surgery or go to another 6 weeks of chemo.

We were told today that we can't go home until her ANC is 250+ for 2 straight days., we are here until at least Thursday.   We are also going to have to start giving her shots every day to help boost and maintain her WBC count. I am not looking forward to that.

Overall, it was a good day. Piper has an amazing little spirit. She is still very happy and playful. She has even started to blow real "smoochy" kisses!  She did it for the first time this morning. ...the lucky recipient? .... A nurse!

So, we settle in for another night...

Its quiet time and all is (kind of) well...

The 5th floor at Duke observes quiet time each day from 1-3pm. Try to tell that to a 13 month old, though.   The lights are all out. It's quiet and peaceful, and she is sitting in her bed clapping her hands and throwing toys and pacifiers at me.

Unfortunately her counts came back lower today than they were yesterday, so we are still here. We don't really know when we will get to go home. We just have to sit here, entertain ourselves, and wait. We pray a lot. We play all sorts of variations of peek-a-boo, and we go for walks around the hospital when we are really bored.

Today we are waiting for a visit from Emma and Papa Bell!  Piper gets really excited when Emma comes to visit. Tomorrow we are scheduled for a CT to see how much progress Piper has made since she started chemo. We are praying for some good news to come our way.

Thanks to everyone for the continued prayers.

Monday, April 11, 2011


We are still here at Duke. Piper had a good day. Her energy was up, but she is still not eating well. She didn't drink much today either. We were told that we can't go home until they see that her counts are definitely recovering. I think they want her ANC to be 500 or more. When we were admitted Saturday night, it was just over 100. Today it was just over 200. They are supposed to draw labs around 3 or 4 am again, so we are praying that we see improvement. We would REALLY like to go home tomorrow!

I have learned some interesting things about "life on the 5th floor" ...  there is a Ronald McDonald House room that offers free snacks and beverages to all parents. You have to sit in their room to enjoy these snacks, though, and they can't allow patients in the room for safety reasons. I have also learned that I am able to take Piper anywhere (within reason) in the building. We just have to sign her out and back in. We also have to pull her IV machine with us. So, today we visited the cafeteria to get me some dinner!  Maybe tomorrow we'll visit Starbucks!  I think it did us both a lot of good to get out of the room for a while!!!

Papa and Nana Bell have been super helpful, and they have been spending some time with big sister, Emma. I am so grateful that we have them in our lives!  We love and appreciate them so much! .... and Daddy and Emma came to the hospital today for a visit!!! As you can see in the pictures, Piper and Emma enjoyed seeing each other. They miss each other a lot!  I can't wait until we are all home and together again!!! 

Sunday, April 10, 2011

Another day at Duke

Piper had a good day today. Her counts were very low so they had to do a transfusion. As soon as they did that she perked right up!  She has been singing and bouncing all afternoon. Big sister, Emma got to visit today. She seems to really like the hospital.   I think she really enjoyed the time spent with "Daddy"!!

Hopefully, if all goes well, we will be heading home tomorrow. They did say 48 hours, though, so we don't know if we get to go tomorrow or Tuesday morning.   Piper has just gone to bed for the night. I am trying to stick to her normal bedtime and sleep routines.

Thanks for all of the prayers. We will try to post another update tomorrow.

Things had been going quite well...

Piper just completed her 6th week of chemo on Friday. We are scheduled to have her CT on Wednesday to see how much progress we've made. Her blood counts were down on Friday but not enough to require a transfusion. Today she has been very sluggish. She is typically a very spirited and playful little girl, but all she wanted to do all day was lay on Daddy's lap. She also had a temp of 100.4 so the Dr.s wanted us to come into the ER. We came, they did another CBC, and her counts are still quite low. She has been admitted and we are here until at least Monday. We are praying that there will be no sign of infection and that she will start to feel better soon!  We will try to keep everyone posted on her progress.

Sunday, April 3, 2011

Update on Piper

Piper has been handling treatment very well!  She hasn't had many 'bad' days.  She has shown some signs of nausea, so we have been giving her the nausea medicine as needed.  It's really hard to determine if she isn't feeling well because she is such a happy and playful little girl!  Her platelets were low on Friday, so we have to have another CBC done on Tuesday. 

She is doing a little better with eating.  We are trying to increase her calorie consumption as much as possible.  She rejects just about anything with lumps or texture.  We met with a nutritionist, and she has recommended that Piper drink at least 16 oz. of Pediasure each day.  That will make sure she's getting the nutrients that she needs.  She also recommended adding heavy cream to mashed fruits or canola oil to vegetables or other foods, when possible.  So, we will keep trying to introduce different solids.  We have determined that she likes pudding and brownies!  .....  high in calories, but not so nutritious!

Piper is also going to start participating in the Governor Morehead Preschool program.  An instructor from the school will come to our house every other week and spend time with Piper.  We are excited to see how this might help her progress.

We are scheduled to go back to Duke next Friday, April 8th for another chemo session.  The following Wednesday, she is scheduled to have a CT done.  The doctors and surgeons will review the CT and determine if the tumors have shrunk enough to do surgery or if we need to continue with another round of chemo.  If they decide it is time to have the surgery, it will probably happen the next week.  We are praying that we will have good news soon!

We are so grateful for all of the continued prayers and support.  I will try to keep everyone posted as much as possible.