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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Sunday, July 31, 2011

Busy, but Good!

We have been super busy recently.  Piper had dialysis on Monday, Wednesday and Friday last week.  She also had her eye appointment on Tuesday.  On Thursday, we had to go to clinic to have her dressing changed.  We also had a nice visit to the ER on Wednesday night for another dressing change.  We had such a busy and crazy week that the doctors gave us the whole weekend off!!!!

Dialysis has been going well.  She had to have a blood transfusion again on Friday.  Her counts have been low lately.  We have been having issues with the peritoneal dialysis catheter this week.  The site keeps bleeding.  She had to have the dressing changed on it several times this week.  I think it is under control now, though.  We had some good news this Tuesday at the eye doctor.  Piper still does not need to have eye glasses yet.  Her larger cataract has not changed in the past few months so we don't have to discuss surgery for that yet!  We were told (once again) that the next appointment in November she will have to be fitted for eyeglasses.  We'll see what happens in November.

We had a great time together this weekend.  We did some shopping, we played, we did some work around the house, and we finally returned to church!  It was so nice to see some of our great friends that we haven't seen in a very long time!  I really miss going to church each week.  Piper couldn't go to nursery for obvious reasons, so she stayed with us for the service.  She really enjoyed the worship, and she was singing the whole time. 

This week she has dialysis on Monday, Wednesday, Friday, and possibly Saturday.  I started training last Friday for administering the peritoneal dialysis at home.  I have to attend training sessions on M, W and F of this week as well.  If all goes well by Friday, they will give us the whole weekend off again!  We also have both Tuesday and Thursday off this week because she isn't due for chemo again until the following week.  August 9th is Piper's last scheduled chemotherapy!!!!  We have been looking forward to this day for a long time, and we praise the Lord that He has brought Piper through this part of her journey. We are so grateful for the continued prayers and support of our friends and family.

Thursday, July 21, 2011

Lots Going On

This has been a crazy week.  Piper had dialysis on Monday.  While we were there they realized her hemoglobin was low so she needed a blood transfusion.  They also needed to flush her new catheter line.  That is a long process.  Monday night she got sick, and she threw up quite a bit.  On Tuesday we had to go to hem/onc clinic for labs and chemotherapy.  While we were there, they decided they needed to change the dressing on her new PD catheter.  That was not fun!  On Wednesday, Piper was scheduled for dialysis.  Her catheter had a clot in it, so it wouldn't work.  They had to put something in it to help break up the clot.  So, she could not get dialysis.  While we were there, they needed to flush her new PD catheter again.  We were finally allowed to leave around lunch time.  We went to the cafeteria to get some lunch before heading home.  Piper got sick while we were eating in the cafeteria.  Wednesday night after dinner Piper developed a fever.  She reached 101.5.  That meant a trip to the ER for blood cultures and antibiotics.  Thankfully her counts were good so they didn't admit her!  They wanted to draw cultures from her port and both of her catheters.  The dialysis team couldn't get to the ER until midnight.  I 'kindly' convinced the doctors that they already had cultures from her port and we needed to go home and get some rest.  They finally agreed to give her antibiotics and let us go.  We got home around 2 am.  This morning Piper had to come back for another try at dialysis.  Her catheter is working!  Praise the Lord!  So now we sit for three hours until dialysis is finished.  She is also scheduled for dialysis on Friday and Saturday.  Sunday is our day off!!!!!!

Monday, July 18, 2011

First Day of Outpatient Dialysis

After a wonderful day at home with the family, we are starting our new outpatient routine.  We arrived first thing this morning.  They took her vitals in clinic, and then we headed up to the 7th floor.  She just started dialysis around 10 am.  Dialysis typically runs for 3 hours.  It takes around a half hour more to disconnect the tubing and get her ready to go.  Tomorrow we come back to clinic for labs and chemo.  Please keep praying that her kidney starts working and we see some wet diapers!

Sunday, July 17, 2011


Home.  We are home.  Piper was discharged on Saturday afternoon.  I can not tell you how good it feels to be home!  Piper did very well with her surgery on Friday, her blood pressure is under control, and we finally have an outpatient dialysis schedule confirmed.  We have to still go back as an outpatient every Monday, Tuesday, Wednesday, Friday and Saturday.  M, W, F, S she has dialysis.  Tuesday is her appt for labs / chemo.  In about 6-8 weeks, we should be able to start peritoneal dialysis at home. 

So, for now, we are home!  Praise the Lord!! 

Thursday, July 14, 2011

Another Tough Day Ahead

Tomorrow morning at 9 am, Piper is scheduled for her 4th surgery.  She will have the peritoneal dialysis catheter placed.  We expect surgery to be an hour or less.  We will not have to go to PICU after surgery, so I am very happy!  If all goes well this weekend, we might have some very good news next week!  Tonight we pray that God will once again guide the surgeons hands, and lead the teams that are making the decisions for Piper's care.

Wednesday, July 13, 2011

Fun Day Today!

Hyundai Hope on Wheels

Piper had a great day today!  She participated in an event at Duke called Hyundai Hope on Wheels.  Hyundai donates a percentage from each car sold to pediatric cancer research.  They brought a Hyundai to the hospital, and they invited the pediatric cancer patients to put their painted handprints on it.  Piper placed her red handprint on the front passenger door under the right side of the door logo.  Click on the link above to see photos.  There is a picture of Piper having her hand painted red.  You can't see her face, but you can see her hand, her leg, and my arm.  There is also a picture of us together.  She was holding up her hand after she left her handprint.  It was a lot of fun.  We even got a gift for participating!  and Duke got a "big" check! 

So, now for the news about Piper.  She is scheduled for surgery on Friday.  She will have a catheter placed in her abdomen for administering peritoneal dialysis.  She will have to continue regular hemo dialysis until the new catheter is fully healed and ready for use.  Once the surgery is complete, and we have all of the logistics worked out so we can have outpatient dialysis...  We should be able to go home! 

Some other good news...  Piper's blood counts are looking good.  Her blood pressures are looking good.  She is on all oral medicines at this time.  She is not attached to any machines, and she is eating!!!!!!!  She had over 600 calories and 15 oz of fluids today!  That is a lot for Piper!  Her energy level is amazing.  She wants to walk around the halls all day long!  If you saw her now, you would not think that she is a sick kid.  She looks wonderful!

Today we praise God for all of the healing that He has done and is doing in Piper and all of her friends here at Duke, for blessing Piper with such an unshakable spirit, for the generosity of organizations like Hyundai that want to help the children, and for the love, patience, kindness, support and continuous prayers from our friends and family.

Monday, July 11, 2011

A Fun Day!

Piper had a very busy day today.  She had dialysis first thing this morning.  As soon as it was over, her friend Violet came to visit and she brought us lunch!!!  Okay, her Mom brought the lunch, and we really enjoyed their visit!  After lunch we took a long wagon ride around the hospital.  When we returned, Piper wanted to walk around the halls.  She likes to walk, but I have to hold her hands and help.  She was in a great mood all day!  This afternoon the physical therapist brought us some walkers to try out since Piper wanted to walk so much.  She really likes the one with the horn!  I was hoping she wouldn't notice the horn, but as any child, it didn't take long!  She walked so much tonight that she wore herself out.  Hopefully this means a good night of sleep for Piper! 

Sunday, July 10, 2011

Things Are Going Good

Piper has had a good weekend!  She pulled her NG tube out twice in one night a few nights ago, so we decided she was trying to tell us something.  She wanted to eat.  They didn't replace the tube, and she has been eating on her own for a few days.  She is not eating great, but we are getting her to eat a few ounces of food at each meal.  We found out that patients that are experiencing kidney failure struggle with nausea, especially in the morning.  Add that to the nausea she is already experiencing from chemo, and it's amazing that she is eating anything!  Please pray that her appetite increases, and she is able to keep the food down.  Praise the Lord for Zofran!!!!  (wonder drug for nausea) 

Piper is currently not attached to any machines!!  She doesn't have the feeding tube for the feed machine, and she isn't getting fluids or IV meds.  This is really nice because we don't have to take her IV pole with us when we go for walks.  Daddy brought her red wagon to the hospital so she can ride around in it when we are out walking.  We try to take a lot of walks.  It does us both a lot of good to get out of the room!

So now we start a new week.  This week we expect to have another surgery to place a catheter for administering peritoneal dialysis.  We don't know when the surgery will take place.  It should be fairly short and routine, but surgery is surgery.  Mommy doesn't enjoy handing her baby girl over to a stranger and walking away.  I know that this will make things better for her, though.  Peritoneal dialysis is a procedure that we can do in our own home every day.  This will allow her the benefits of dialysis without having to come to the clinic 3-4 times a week. 

We keep praying for lots of pee.  We aren't giving up yet.  We know that God can heal her kidney, but we also know that if he heals her, it will be in His time, not ours.  That's not really easy for Mommy and Daddy to accept, but we must keep faith.  Please pray for Piper to start eating well, for so much pee that we have leaky diapers, and strength for our whole family.  Sometimes I think Piper is stronger than all of us put together!

Friday, July 8, 2011

What A Week

I can't believe another Friday has come and gone.  I can't believe that we are still inpatient with no real idea when we will be released.  I really need to focus on the good things right now!  Piper has had a really good week.  Yesterday something clicked in her, and she turned into sweet and funny Piper again.  She has been smiling, laughing, crawling, pulling up, cruising, dancing, waving, clapping, talking and just being plain old silly again!!!  It is very encouraging to see her making so much progress.  Today we visited the playroom here at Duke for the first time.  I was always hesitant to take her because she is so small, but she had a great time.  She really enjoyed watching the other kids playing, and she really liked playing with a fireman's hat!!  She didn't have any tubes today, so she felt free to move about.  Daddy brought her wagon tonight to keep in her room.  We can take wagon rides during the day!  Daddy also brought Mommy something really yummy for dinner (kanki) so I didn't have to eat cafeteria food!!!  Yeah Daddy!!!!!!!

Piper has really gone through a lot this week, but she has done so well with it all.  She is such a strong little girl!  She has had to have her NG tube replaced several times.  She had dialysis 3 times so far this week.  She had a nuclear renal scan and an ultrasound yesterday.  She has had needle changes and lots of dressing changes.  She has had multiple physical, occupational, speech and language therapy sessions, and she rarely gets much rest.  They are trying to plan surgery to place a catheter for peritoneal dialysis.  They need to wait for her blood counts to come back up first.  She has also been struggling with nausea and vomiting.  Please pray that the Lord will comfort her and give her strength and patience as she overcomes all of these challenges.

Our new big challenge is eating.  Piper has been pulling out her NG tube.  She has to do one of the following : 1.  Start eating an adequate amount of food / calories, 2.  stop pulling out her NG tube, or 3.  have a feeding tube placed in her stomach.  These are in order of my preference.  Please pray that she starts eating well!  This is a really big issue that we need to conquer, and soon!!!

Please also pray for me.  Today I have started sneezing and my nose is running.  I really do not need to get sick right now!  Thank you all for your continued love, prayers and support!

Thursday, July 7, 2011

Beads Of Courage

Piper was enrolled in a program a few months ago called Beads of Courage.  This is a nationwide program offered to kids that are being treated for cancer or blood conditions.  When the child is enrolled they receive a string and beads to spell out their first name.  The child gets a bead for each of the specific challenges that they face.  Their strings of beads tells the story of their journey and the many trials they have faced along the way.  There are different colored or special beads for each specific treatment. For example, every time Piper receives a chemo treatment, she gets a white bead.  Below is a list of the beads that Piper has earned since her diagnosis on March 2nd.  The list includes the color or type of bead, the treatment received, and the number of beads that Piper has earned.  This is a really awesome program, and it means a lot to the kids.  I look forward to sharing this with Piper when she is old enough to understand.  I want her to know how brave she was, and all that she has overcome.  To read more on the Beads of Courage program, visit

White - Chemotherapy / Immunizations = 13
Blue - Clinic Visit / Infusion = 15
Silver - Dressing Changes = 37
Magenta - ER / Unusual Occurrence = 4
Brown & Face Bead - Hair Loss = 1
Purple - Infusions (antibiotics) = 13
Yellow - Inpatient Admission = 4
Lime - Isolation / Fever / Neutropenia = 6
Orange - Line Placement (port, central line) = 3
Bumpy - Medication Challenges  / Mobility Challenges = 10
Black - Pokes by Needle = 28
Dark Green - Dialysis, TPN = 19
Star - Surgery = 3
Light Green - Tests / Scans = 27
Red - Transfusions = 8
Aqua - Tube Placement (NG / Chest Tube / Foley) = 7
Square Heart - Transfer to PICU = 2
Rainbow - Care Team Visit (PT / OT / RT / Others) = 8
Glass Selection - Special Acts of Courage = 6

Wednesday, July 6, 2011

Baby Needs A Blackberry

Piper has so many procedures and tests that I think she needs her own blackberry to keep track of her busy schedule!!!  Today alone she did the following : replace NG tube, change dressing for NG tube, blood drawn for labs (twice), renal scan, replace port needle, change dressing on port site, speech therapy, ultrasound, vitals checked every 4 hours, placed on heart monitor for the night, and she ate real food for breakfast and lunch!!!!  That's not including the parade of doctors and nurses that came by to look at her and listen to her with the stethoscope.  She is quite tired right now, and so is Mommy.  Tomorrow she will have dialysis.  :-(  Please pray that she rests well, and that tomorrow goes well.

Tuesday, July 5, 2011

Day 28

We have been here now for 4 weeks.  Our frustrations have been growing and growing.  We have felt like the nephrology team hasn't been on the same page for a while now.  We feel like they aren't making any plans to let us go home and continue treatments as an outpatient.  We did some research, and we contacted a doctor in Boston.  I have been communicating with him this week.  I told the teams at Duke that we are also consulting with this doctor.  I also told them today that we are frustrated with the way they are handling or not handling things.  So, tomorrow they are doing a new scan to determine her current kidney function.  They also mentioned this evening that they are working on a plan to get us home soon!  Now let's see if they're serious.

Please keep praying that her kidney will wake up and srtart working soon!!!  The doctor in Boston said it could take up to 3 months.  If it hasn't started working by then, they consider it kidney failure.  Please keep praying.  We know that He hears.  Please also keep our new friend Suzanna in prayer.  She also has wilms, and she is having her surgery tomorrow (Wednesday).

Monday, July 4, 2011

Happy Independence Day!

We had a nice day today.  Daddy and Emma came to visit, and they brought everything you could need for a 4th of July picnic.  We had a red tablecloth, macaroni salad, potato salad, deviled eggs, hot dogs, berries, paper plates, napkins, plasticwear and patriotic decorations!!  What a pleasant and fun surprise! 

Tomorrow Piper is scheduled for dialysis.  Today they changed one of her blood pressure medicines from IV to oral.  That is one of several things that has to happen before we can go home.  We don't know when we get to go home yet.  We just have to take it day by day.

Sunday, July 3, 2011

Day 26

Yesterday Piper had a good day.  She laughed a lot!  ...mostly at her Daddy and sister!  She had a quiet day.  No treatments or procedures; just lots of medicines and vital sign checks.  One of our little friends was admitted on Friday for a night of chemo so we got to visit with her yesterday before she went home.

Today, however, will be a little busier.  I was awoken at 5 am.  I was told that Piper needs another blood transfusion.  Her counts are down.  They have to do it first thing this morning because she also has dialysis scheduled today.  Yuck!  We will be busy and stuck in her room the whole day.  Please pray that she will rest through her treatments today.  The transfusion will take about 3 hours, and dialysis takes about 4 hours total. 

If you've ever thought about donating blood, please consider Piper and all of her friends.  It makes a huge difference.  They each require many transfusions throughout their treatment. 

Friday, July 1, 2011

Where Did June Go?

I can't believe that it is already July!  I wonder if we'll get to see any fireworks from our hospital window?  That would be interesting!!

Yesterday was a wonderful day.  Piper did not have any tests or treatments.  We were blessed with 9 visitors between family and friends.  She was in a fairly good mood for most of the day too!

Today was a bit busier, but it was still a good day.  She had 3+ hours of dialysis, speech therapy visited to work on eating skills, and Daddy, Alec and Emma came to visit for a while.  Piper smiled a lot more today, and she even laughed a lot!!!  I took her outside for a walk, and she pointed to the flowers.  She seemed to really enjoy that!   She did get sick today, though.  I am guessing that that is nausea from chemo.  A little Zofran, and she was much better!  Hopefully she will sleep better tonight!