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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Wednesday, June 29, 2011

We're Still Here, But Not In PICU!

I just realized that my blog posts have not been publishing!  So, I will try to get everyone up to date.

We spent the weekend in PICU trying different medications to lower Piper's blood pressure.  We finally figured out the correct combination.  Her pressures have been staying in the one-teens and one-twenties.  That is good for her.  The dieticians have finally created a recipe for a formula.  She is still receiving the formula through the feeding tube.  We were moved out of PICU on Monday.  They moved us to the step down unit.  We were then moved to a regular room on Tuesday. 

She had dialysis on Saturday, Sunday and Monday.  Three days in a row was a bit much.  She typically will only have it every other day. 

This morning the dialysis machine pulled up to her room before she was even awake.  3+ hours later, she was done.  Next she had to have a needle and dressing change for her port.  Then the speech/language therapist came by.  Now she is getting some Zofran in preparation for her to start chemo again tonight.  She will only have chemo every 3 weeks for a total of 9 weeks or 3 times.  This regimen should be a lot easier on her than the prior.  We pray that she will be able to handle the dialysis and chemo together. 

We thank God for bringing her blood pressure down.  We pray that He will heal her kidney and that it will start working well.  We thank Him for the continued healing that He will do in Piper.

Sunday, June 26, 2011

Day 19

Piper is still in PICU.  The PICU Dr.s still don't think there is any reason for her to be here because she doesn't require "intensive" care.  Her blood pressure is still not great, but they are treating it with oral medications.  They have added an ace inhibitor.  She seems to be responding a little.  The PICU Dr.s are going to plead our case again today to the hem-onc team, and maybe they will let us go to a regular rolom again.  I am not counting on it, though.  It would be especially nice now, though, because big brother Alec came into town yesterday.  We can't all visit at once in the PICU.  Only 2 grown people at a time.  So, please keep praying for Piper's blood pressure and that we will be placed in a regular room soon.

Saturday, June 25, 2011

Still in PICU

Day 18, I think?

Piper is still in PICU.  She is still battling HBP.  Please pray that the Dr.s can get it lowered on oral medications and soon!  She is doing well, otherwise.

Thursday, June 23, 2011

Yesterday... During Dialysis

Here We Go Again...

We are being moved back to PICU tonight.  Piper's blood pressure won't come down and stabilize.  Please pray that this gets resolved for her soon!

Wednesday, June 22, 2011

It Was A Great Tuesday

To God be the glory!  Our baby girl is starting to feel better!  She has still had her share of issues, but she is showing improvement every day; both physically and mentally!

First, the rough stuff ...  Her blood pressure continues to be an issue.  The Dr.'s are trying a variety of medicines to help get it under control.  We need it to be lower and stable.  She has been throwing up each morning.  We assume that is due to issues with her eating/digestion.  She will remain on the feeding tube for a while longer.  They want her to sleep in her car seat inside of the crib.  That should be interesting, but it will keep her at a 45 degree angle.  They are also giving her a regular schedule of Zofran.  Zofran is the wonder drug for chemo patients.  It helps with nausea.  She is still not peeing enough.  We need a big increase in her urine output.  She will have to keep having dialysis treatments every other day until her kidney fully recovers.  We need this to be soon!  Please pray for these issues to be resolved quickly for her.  She is getting very frustrated with the whole process.

Now, on to the better stuff ...  :-)
In the past 24 hours Piper has been working hard to learn how to sit up again by herself.  She wants so much to just get down on the floor and play!  She did sit up in her crib and play a few times yesterday.  She had so much fun playing last night!  She was smiling and laughing so hard that her little self was bouncing in the bed!  We have also seen some improvement in her kidney scans and function over the past week.  We need a lot more pee, though!

Today we thank God for her smile and her laugh, all of the people taking care of her, the healing that He is continuing to do in her, and for our friends and family!

Monday, June 20, 2011

Piper Rose Bell

Lounging on her side!

Day 13

We had another good day.  Piper had dialysis today.  It went well.  She is really starting to lose a lot of the water weight!  Our little baby girl had turned into a large puffy baby girl.  I am glad she is getting back to her normal size.  She looked so uncomfortable for a while, and I could hardly pick her up or hold her!

She played with some of her toys today in bed.  She laid on her side for a while as instructed by physical therapy.  They recommend that she doesn't do any twisting at the waist, and that she spends time laying on each of her sides.  She seemed to be happy on her side today!

We took a ride in the stroller this morning, and we went to Starbucks.  We shared some vanilla bean scones.  She really likes Starbucks pastries! ... so does Mommy!

We are both quite tired, so we are going to try to get a good night's sleep.  Good Night!

Prayers Are Working

Yesterday we enjoyed some good family time as we celebrated Father's Day!  Brian, Emma, Papa and Nana Bell visited us.  We even had some friends visit us in the evening!  They brought Piper some Mr. Potato Heads to play with.  We are so grateful for our family and friends.  We had some good news yesterday as well.  Piper had 119 mL of pee yesterday!!!!!!!!  That is not even including the poopy diapers!  This is big progress.  We hope to see an increase again today.  I think the Dr.s want to see around 400 mL per day. 

We were moved to a new room at 11pm last night.  It is a corner room, and it is larger!  The dialysis machines are in here right now.  We are able to have the machines hooked up, and we can have all of our things inside the room with the door closed!  This is a much safer environment!  Thank you for the prayers to make this happen!

Piper had a rough night again last night.  She hasn't been sleeping well, and she got sick this morning around 4 am.  We cleaned her up, gave her some Zofran, and she went back to sleep for a while.  She isn't eating well again either.  They have changed her "diet" today to a renal diet.  They are changing the formula for her feeding tube, and they will feed her for 20 hours a day with it.  This is not great news, but it is temporary.

Please pray that Piper's appetite improves drastically!  She has never been a great eater, but I think the Dr.s want to change that!  Please pray that her urine output continues to increase and also for her comfort and rest.  She seems very frustrated and miserable most of the time.  I look forward to seeing her play, laugh, smile and have real fun again soon!

Saturday, June 18, 2011

Getting Better Every Day

For those of you who read my previous post, I apologize if it came across as rude.  I was just feeling very frustrated.  I care very much about all of the kids on 5100, and I pray that God will bring healing and comfort to each of them.  I just want us to have the space for Piper to safely receive dialysis treatments.

Anyway, it was a good day.  Dialysis showed up very early this morning.  Three and a half hours later, they were finally finished.  Piper's blood counts were down today so she needed another transfusion.  I thank God that so many people donate blood.  It really does make a difference!  If you have donated blood in the past, Thank You!  She did not eat that well today.  She can't drink much either.  We have to really watch her fluid intake.  We can't allow her to get too much because her body can't get rid of it.

I gave her a nice (sponge) bath tonight.  Our night nurse even got her a new crib with quieter side rails.  If you have any experience with hospital cribs, you will understand just how much of a blessing that was!

In spite of everything that our family is going through, we have a lot to praise God for.  We thank Him for the awesome surgeons, doctors, nurses and technicians here at Duke; for Piper being well enough to get out of PICU; for the amazing outpouring of love, support and prayers from family, friends, and so many people that we have never even had the honor of meeting!  God is great, and we know He has Piper in his hands!

Tomorrow is a new day.  Hopefully we will sleep well enough tonight to enjoy it!  ;-)

Friday, June 17, 2011

Day 10

It was another good day for Piper.  She sat upright in a high chair for the first time since surgery.  She ate yogurt, and she played with rice krispies.  She had another ultrasound today.  It showed increased flow in all 3 poles of her kidney.  She will continue to have ultrasounds every other day.  She will have dialysis again tomorrow.  She will probably continue with that every other day as well.  She is in a lot of pain now because of gas and pressure in her tummy.  They are giving her mylicon, and they are venting her feed tube, but it's still not helping.  She hasn't been sleeping well because of it.  Please pray for comfort and continued healing for Piper.

Some good news is that she has been smiling a bit more, and she laughed a few times today.  Her personality is starting to shine through.


Here are a few pictures that we took over the past few days.  Some are from this morning.  Piper sat in a high chair for breakfast today.  The first picture is of big sister, Emma. 

Thursday, June 16, 2011

Big Day

We are out of the PICU!!!!!!!!!!!!!!!!!!!!!!!!!

I can not express just how happy we are about this.  It is a big step!  They didn't have a room available for us where we usually go, so they put us in the step down unit (5300 unit) tonight.  It is just a step down from PICU.  Hopefully we will get a regular room tomorrow.   The best part is that I can sleep in the room with her!

Piper had a great day.  She has been talking more, and she even smiled and laughed!  Her blood pressure seems to be under control, and her heart rate is good.  She will continue to have dialysis every other day.  She will also have renal ultrasounds every other day to see if her kidney is showing improvement or not.  They removed her foley today.  That is the catheter that catches her urine output.  She is now peeing in her diaper again.  They will weigh the diapers to confirm how much she is peeing.  It's not much, though.  They also removed her last remaining IV from surgery.  She is losing some of the water weight, but not much.  She is a very large baby right now!  So, all in all she is doing well.

She is in a bit of pain because of gas.  The pressure on her abdomen really bothers her.  Please pray for rest and comfort as she heals.

Wednesday, June 15, 2011

A Lot Going On

The past few days have been very busy.  Piper had to have another surgery today.  She had a more permanent catheter placed in her chest to receive dialysis.  We hope she won't need this long.  Her kidney needs to start working better before they will remove it.  They did remove the temporary catheter, though.  She has been taken off of the IV blood pressure medicine.  She was placed on an oral medicine instead.  Her blood pressure is getting under control.  She has been eating regular food, but the Dr.s don't think she is getting enough calories and nutrients to support her body during the healing process.  Therefore, she had a feeding tube placed tonight.  She was not happy, but it will help her.  Hopfully they will remove it soon!  She has been having daily ultrasounds to monitor the flow in her kidney.  It has increased slightly in the top and middle poles, and it is starting to appear in the lower pole.  This could be a sign that her kidney is "waking up".  She is continuing to have dialysis.  We are hoping it will help to remove some of the puffiness and water weight.  She has absorbed so much fluid since surgery that she has gained over 5 lbs. this week!  She is now a very heavy baby!!!!  I feel bad for her because I know how uncomfortable it can be to have so much fluid on you. 

Some good news. ...  She has started to make some happier sounds and somewhat talk!  She has said "no", "uh oh", and "num num".  She has also played with some small toys and a stethoscope!  This is a big improvement.  We are so happy to see her personality coming around!  Also, she has started to pee, but it is very minimal.  We need a lot more!!!  We were told today that it is possible that we might be out of PICU by the weekend!  I know that that is not a guarantee, but it is something to be hopeful for!  They will move us to a regular room.  That would be so nice!

Thank you to everyone for all of the continued prayers and support.  Please continue to pray for Piper's comfort and healing.   Sorry if this is a bit of a ramble.  There is a lot to share, and I am too tired to worry about grammar and word flow.  ;-)


Surgery has been put off until Thursday.  It was a good day, though.  Piper is eating more, and peeing a "little" more.  It is still not enough though.  I'll try to write more later.

Monday, June 13, 2011

Good Day Today

Today was a good day!  Piper was in a fair mood most of the day.  She ate food today for the first time since Tuesday night!  She had strawberry ice cream, some strawberry yogurt and some apple juice!  She had about 10 ml of fluid output today.  It is not typical urine because it is brownish, but they are calling it pee so that makes me happy!!!!!

She had dialysis again today.  The have decided to place a more permanent catheter for dialysis purposes.  It will be removed once she no longer needs dialysis.  This will be surgically placed Wednesday morning.  So, another Wednesday in the OR.

Her heart rate and blood pressure have stabilized.  She has been put on another blood pressure medication.  Hopefully all will go well this week, and we'll be able to move to a regular room soon.

Thank you to everyone who has been praying for us.  We know He is listening.  Please continue to pray that her urine output increases and that she will start feeling better!

Sunday, June 12, 2011

PICU Stinks!

We are all tired of being in the PICU.  I feel so bad for the families that spend months in there.  It has been quite a roller coaster!

Friday night and all day Saturday were very rough.  Piper cried almost the entire time.  We decided that she needed a mild sedative to calm her and help her to rest.  It worked wonders!  She rested last night and most of today.

Her blood pressure went up, so she is back on blood pressure medicine.  She drank some pedialyte tonight.  That was the first "food" she has had since Tuesday night.

In the past two days we have been able to remove 1 IV, 1 arterial line, cvp line, the braces to hold her arms straight, and the tube from her nose.  We are making progress!

Piper has also started pooing again.  This means her bowels are working again.  We are still waiting for her kidney to jump start and make some pee.  Please pray that Piper will pee soon!!

Friday, June 10, 2011


It was a very long day.  Piper's heart rate and blood pressure were better today.  She still hasn't peed, though.  So, she had her first dialysis.  She will have dialysis tomorrow and Sunday.  They will re-evaluate on Monday. 

Hoping for a good day tomorrow.  She is resting now. 

Thursday, June 9, 2011

Praying For Pee

It has been a long day.  Piper still hasn't peed since surgery.  She has to pee to prove that her kidney is working properly.  Also, her heart rate has been raised all day.  She has been running a fever off and on, and she has been fighting a lot of pain.  They increased her pain meds tonight.  We hope if we minimize the pain, her heart rate will go down.  They have been pumping her full of fluids for the past 24 hours.  Unfortunately, her body doesn't know what to do with it all.  She is swollen from head to toe.  The worst part is that her abdomen is also swollen, and it is putting pressure on her incision.

Please pray that Piper pees.  I know it "sounds" silly, but it is very serious.  Thank you.

Wednesday, June 8, 2011

What A Day!?!?!!

So much to say!  This morning Piper was scheduled for surgery at Duke.  After a few scheduling delays, they finally started surgery around 12:30.  Things went well.  It took about 4 hours.  We spoke with both surgeons when they finished.  As expected, they removed the full right kidney.  They removed about 20% of her left kidney as well.  They removed all visible tumors!  She did well.  She didn't lose a lot of blood. 

They ran another test on Monday to determine how her (then) existing kidneys were balancing the kidney function.  They determined from that test that her left kidney was already carrying about 2/3 of the load.  This means that there should be less chance for the need for dialysis.  (Very good news!)

So, she is now in the PICU (pediatric intensive care unit).  She will remain there for another day or two.  She has a very large incision that will require a lot of healing.  She has a variety of tubes and IV's in addition to her port being accessed.   We do not know what the next week or so will look like, but I am feeling optimistic.  We haven't been told if she will still need more chemo or not.  We are expecting that she will have another 6 weeks, though.

For now, she is resting.  I pray that she sleeps peacefully tonight.  We thank you all for your continued prayers and support.  We had so many people praying for our little girl today.  I felt like I had God's army standing right behind me.  I hope Piper felt it too!

Friday, June 3, 2011

Preparing For Surgery

The following is an email that I sent to some close friends and family.  It is a summary of how things have been going, and what is ahead....

Piper has been doing well with this latest round of chemo.  She managed to make it through the last few weeks without having to be admitted again.  For that, we are so grateful!  Her counts are all up now, and she is full of energy!!!  We had an appointment on Tuesday for a CT Scan.  The scan showed exactly what the Dr.'s anticipated.  There isn't any way that they can save her right kidney.  The tumor is too large, and even with 12 weeks of chemo, it isn't shrinking much.  They will, however, be able to save part of her left kidney.  There are a few small tumors that remain.  There was considerable shrinkage over the past 12 weeks, though.  The surgeons think that they will be able to remove the tumors while leaving enough kidney to allow proper function.  We pray that he is right!!  Her surgery has been scheduled for Wednesday, June 8th.  We won't know what time until Tuesday evening.  We met with the surgeon (Dr. Henry Rice) this morning.  He is the same surgeon that placed Piper's port in March.  He is a wonderful person.  He actually will sit and talk to you...  so unlike the typical surgeon!

He told us that the surgery will take around 4+ hours.  They will have to do a very large incision across her entire abdomen.  She is going to have a rough road ahead for healing.  As soon as surgery is completed, she will be moved to the PICU.  Visitors will not be welcomed while she remains in PICU.  We hope that she will recover well enough to be moved to a regular room after 2-3 days.  They can't tell us how long it will take for her to heal.  They can't tell us much else until the surgery has been completed.  We choose to put our faith in God.  We know that He loves Piper more than we could ever understand.  (As a parent, that's so difficult to imagine.)  We know that He will take care of her, and that whatever happens will be for His glory.  We appreciate the prayers for Piper and our family.  Prayer is the greatest gift that anyone can give us right now!

I will try to keep everyone updated as we move through this process.  I really don't know what to expect for next week, so we will take it one day at a time.

Also, a lot of you know that we were very concerned with how we were going to care for Emma during this time.  We were so blessed recently.  A dear friend of ours found us a few qualified individuals on  She set up face to face interviews with a few of them.  The first person we met with was a perfect fit for our needs.  We hired Molly before she left the interview.  Emma loves her!!!  Molly is very flexible, and she is able to be here just about anytime to help.  She is really good with Emma.  Emma informed me the other day that "Molly likes bubbles, chalk and scooters!"  (Molly thought that was funny!)  She is a good sport, though, and she is taking very good care of our little girl.  It is such a blessing to know that Emma will be well taken care of.  .... although, I will still miss her dearly!

Again, we appreciate your prayers, your friendship, and the outpouring of love for our family.