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, December 30, 2011

Piper Pics

Piper had the typical one year old encounter with Santa!

(left to right) Piper, Mommy, Emma - look at all of that hair! (on Piper)  ;-)






2011

2011 has been the most eventful year of my life, and probably anyone in our family's life as well!  We have seen the good, the bad, and the ugly....  but we praise God through it all!

January was mostly quiet. 
February : we celebrated some birthdays, and we signed a contract to buy a new home!
March : we celebrated Piper's first birthday! (3.2.11), Piper was diagnosed with cancer (3.2.11), we closed on our new home and moved (3.11.11), we discovered how cancer changes everyone's lives.
April : we spent some more time in the hospital dealing with cancer issues.
May : we spent some more time in the hospital dealing with cancer issues, and we celebrated another birthday!
June : we spent a LOT of time in the hospital (6.8.11 - 7.16.11), Piper had her BIG surgery (right kidney, 20% of left kidney, and all tumors removed!), Piper was diagnosed with kidney failure and started dialysis
July : we spent a LOT more time in the hospital, Piper continued on dialysis and chemotherapy
August : Piper was declared Cancer Free!, she ended chemotherapy treatments, she continued dialysis
September : We started doing peritoneal dialysis at home every night.  We celebrated big sister's 3rd birthday!
October :  We continued peritoneal dialysis, We went to Disney World!
November :  We continued peritoneal dialysis.  We celebrated Thanksgiving!
December :  We continued peritoneal dialysis.  We had an ugly car accident that totaled our van.  (We're all okay for the most part).  The mail lady ran down (totaled) our mailbox post.  We bought a new van!  We celebrated Christ's birth!  We prepare to celebrate the end of this year!

That's our year in a nutshell ....  I think we covered most of life's most major stressors.
1.  Purchasing a new home and moving.
2.  Having an immediate family member diagnosed with a life threatening illness.
3.  Having an immediate family member diagnosed with a second life threatening illness.
4.  Vacation.
5.  Car Accident.
6.  Purchasing a new car.
....  and then our mailbox was run down!  ;-)

This year has opened our eyes to so many new reasons to pray and praise God!

So, here's the revised version :
January :  Enjoyed a peaceful start to a year of discovery!
February : Celebrated life, and found our new home!
March : Endured great struggles as a family so that we could grow together and in Christ!
April : Met new friends that needed us to pray for them!
May : Celebrated life, and prepared for Piper's life saving procedure!
June : Learned to praise God every single day for every single breath!
July : Praised God for being "home" together as a family!
August : Praised God for ridding Piper's body of cancer!
September :  Started a process that would allow Piper to be at home every day!
October : Enjoyed a magical vacation!
November : Celebrated Thanksgiving with family!
December :  Celebrated Christ's birth with family!

Wishing you all a safe and Happy New Year!  May God bring us peace!

December Update

We recently had Piper's appointment at Duke to confirm if there was a hole in her PD (peritoneal dialysis) tubing or not.  The scans showed no leaks!!!  This is good news.  We still can't explain the bulge in her tummy, but the doctors aren't worried.  They just said to let them know if anything changed.  Her December nephrology appointment went well.  Her labs came back with good results.  We were told that we will start the transplant discussions in January.  There is still debate over when the "1 year cancer free" date is....  the nephrology team says June 8, but the oncology team says mid August.  For now, we go about our days, enjoying every moment we have with each other!  We praise God that we are all here to celebrate the holidays together and at home!

Thursday, December 8, 2011

Piper's Visit with Dr. Rice

Piper had an appointment with Dr. Rice (her surgeon) yesterday.  Her nephrologist thought she had a small leak in her peritoneal dialysis catheter, but Dr. Rice couldn't tell from just looking at it yesterday, so they will look at it further when we go back in a few weeks.  They want to put a dye in her catheter and view it at Radiology.  So, we wait, and we pray that it doesn't get any worse.  It doesn't appear to be affecting the dialysis process, so I think it will be okay.

Wednesday, November 23, 2011

Piper's Eye Appointment

Piper had her appointment today at Duke Eye Center.  It sounds a little funny, but they had to dilate her eyes.  Obviously, it wasn't for the purpose of making her pupils larger.  Apparently, they needed to dilate her eyes so she couldn't change her focus while the doctor was examining them. 

She is very near sighted.  We already knew that, but apparently now they know her prescription.  Ordinarily they would have given her glasses today, but they don't want to add any new stress for Piper yet.  The benefit of her having glasses now compared to a few months or a year from now doesn't justify the stress on Piper.  Also, there is no sign of glaucoma at this time.  Yeah!!!!!!!  Her cataracts have also not changed much.  This is great news.  We aren't really ready to deal with that surgery yet.

So, we go back to the Duke Eye Center in March. 

Her next doctor's appointment is scheduled for December 7th.  She needs to visit her surgeon, Dr. Rice, to have him look at her tummy.  They think there is a small whole/leak in her peritoneal dialysis tubing.  They saw a pocket of fluid in her abdomen when they did the CT last week.  They say this is common and routine, though.  So, hopefully, we can get that taken care of quickly and easily.  I was told it is an outpatient procedure.  Yeah!!!! We aren't interested in any overnight stays!

For now, we are just looking forward to a peaceful Thanksgiving holiday with family!  Happy Thanksgiving!  Enjoy the pie!


Monday, November 21, 2011

Thanksgiving

We have so much to be Thankful for this year.  We will celebrate Thanksgiving this year with family, and we are so grateful to everyone in our family; near and far.  Every year, we write down what we are thankful for in a Thanksgiving journal that I started a few years ago.  I was looking at the previous years, and I was indeed thankful for my family, but never as much as I am this year.

If you have kept up with this blog this year, you probably already know exactly what I am thankful for. We usually only write down about 3 things each.  I could have filled the whole book this year!  I chose to not list absolutely everything.  I know that God knows my full list.  I've been discussing it with him throughout the year.

I pray that each and every one of you have a wonderful Thanksgiving holiday this year.  Please remember to pray for the kids that don't get to be home this year, and also for their families.

Happy Thanksgiving!


Tuesday, November 15, 2011

Super Piper is NED!!!!!!

Today, Piper had a CT, an echo cardiogram, and an appointment with her oncologist.  Since Piper does not have her port anymore, she had to have an IV placed.  She was not happy....  It took two times for the nurse to get it right.  I wasn't very happy, either.  They finally got it right, though. 

Enter the ketamine.  Ketamine is the drug they always use to sedate Piper.  It works great, and it is quick!  It lasts just long enough for them to get the CT images.  She started coming out of it before we even got her off of the CT table.  She handled it well, though.  Daddy was there to hold her so she was happy!

As soon as the CT was over, they were ready to do her echo.  That went amazingly well!  She usually does not let people put leads on her, and she also doesn't typically cooperate with the ultrasound process.  I guess she was still a little relaxed from the ketamine!

After several hours, we were finally finished.  There is one thing you can always be certain of at Duke.  A procedure that only takes a few minutes will take at least an hour.  AKA : Duke Time.  We were finally allowed to leave the radiology dept.  We headed up to the 4th floor to the oncology clinic.  They drew labs, and we talked to a few nurses and doctors.  They still didn't have the "official" results from her scans yet, so they told us they would call later today.

Piper's oncologist called this afternoon to tell us that her scans were all great!  There is actually hardly any trace of her kidney remaining.  This is actually good news.  Her kidney has basically shriveled up, and is disappearing!  The reason that this is good news......  if the "good" cells aren't growing, then the "bad" cells aren't growing.  As long as the kidney is basically gone, the cancer cells can't grow back! 

So, today we thank God for Piper's failed and disappearing kidney.  I never thought I would be writing something like that.  Only God could know that kidney failure could be the best thing for our little girl.  We have faith in God's love for Piper, and we know that He will continue to do what is best for her.

She did an amazing job today, in spite of everything she had to deal with.  We are so proud of her!!!

Saturday, November 12, 2011

Our Little Shining Star


I haven't posted anything since we were preparing for Piper's last surgery.  I guess I've been busy trying to make everything "normal" again.  She successfully had her port and her hemo-dialysis catheter removed.  Since that day, she has been improving so much!  Her energy is great now.  She plays and climbs on everything.  She has even started eating "a little" better.  She is getting enough food to keep her going, so we're happy with that. 

We even felt comfortable enough to take a short vacation.  On Halloween weekend, we took the girls to Walt Disney World.  They both had an amazing time.  Piper stayed wide awake for most of the day.  The only cat nap was taken during "The Hall of Presidents."  Big sister also chose to take a cat nap during that presentation.  While we were in Florida, Piper decided she wanted to start walking.  She has been walking more and more every day!!!  We are so excited about this.  Her hair is also growing in quickly.  Hopefully, she will be able to wear some hair bows for Christmas!

We had to take the peritoneal dialysis machine, tubing and supplies with us to Florida.  We aren't allowed to take a night off, so we still had to do dialysis at the hotel.  We had to put the machine on a dining chair, the fluid laid to the side on top of a box, and the drain bag sat on the floor.  We had to cut a hole in the mesh siding of the pack 'n play so things would flow easier.  Surprisingly, it worked great!  Praise the Lord!  ... considering how we had things set up, it was nothing short of God's hand that made it all work so well.

Piper is scheduled to have her 3 month OT (off treatment) scans on Tuesday.  She will also meet with her oncology team so they can check her progress.  On Wednesday, she will have her monthly nephrology (kidney doctor) appointment.  These typically last a while because we have to see a lot of people.  Piper handles this well, though.  The following week, she is scheduled to see her ophthalmologist.  We were told that they will be fitting her for glasses at this visit.  They keep saying that, though, so we'll see.

We are getting excited for the holidays.  Piper and Emma put their letters to Santa in the giant red mailbox at Macy's last night.  Piper asked Santa for a new kidney, but she'll settle for some hair bows and toys!  Hopefully she will get her kidney next summer!  We have been told she has to be cancer free for one year, but no one will tell me when that "year" began or will end.....  I was told that they should have better answers for me in January. 

Please pray that Piper's appointments go well this month.  She has been doing so well, and we pray that she keeps improving every day!  Please pray for clear scans, great lab results and a fantastic eye appointment!  Please also continue to pray for the other kids at Duke.  Several of Piper's "friends" are still fighting.  We pray that God will perform miracles on the 5th floor this Christmas!

Friday, September 30, 2011

Another Step In The Right Direction

Piper has been doing well.  She has more energy, and she has been playing a lot.  She is showing some interest in walking, but she doesn't take more than 2 steps at a time.  She's getting there!

Piper has her monthly appointment with her oncologist on Tuesday.  Most patients only have to see the oncologist every 3 months when they are off of therapy, but her team wants her to still come in every month.  I am okay with this, though.  At least we don't have to go 3 times a week.

Wednesday will be a big day for Piper!  She has another trip to the OR.  She will have her hemo-dialysis catheter removed.  FINALLY!  She hasn't needed it in over a month, but they were hesitant to take it out until they were certain she wouldn't need it.  I am so excited to have that out!  It is a quick, routine procedure.  It is also Outpatient!!!!!  We will get to come home the same day.  That is awesome!  .....  and it's good because.....


Thursday morning, we have another doctor appointment.  This one is local, though.  Piper's big sister, Emma has her 3 year old physical!  Emma turned 3 yesterday!  We had a luau party on Saturday, and both of the girls had a great time!  Piper is enjoying all of Emma's birthday presents.


We continue to do peritoneal dialysis every night at home.  It is going well, and Piper is adapting well to the process.  We still struggle with eating and getting all of her medicines in her.  She doesn't like most of them.  Also, her blood pressure is still very high without medication.  We are trying to wean her off of the Minoxidil (bp med) because it encourages hair growth.  Hair growth is good for a recovering cancer patient....  unless you're a baby girl and your growing sideburns.  ;-(  So, we continue to pray that God will help make things easier for Piper.  She is such a fighter, and we are so proud of her!

Tuesday, September 20, 2011

September Update

Things have been going well for Piper.  Her latest ultrasound confirmed that all cancer is gone!  We are so grateful! 

We have been doing dialysis at home every night, and it has been going well.  She will have a minor surgery in a few weeks to have the hemo-dialysis catheter removed.  We are very excited to have that out!  She has been more energetic lately, and she actually wants to get on the floor and play!  She is still struggling with eating, but we are getting enough in her to keep her off of tube feeding.

She is even sleeping better at night.  Praise the Lord!!!!!! 

Sunday, August 28, 2011

Busy Times

I have found that it is rather difficult to make time for writing in the blog when we are at home.  When we are in the hospital, I can't do much after Piper goes to sleep because I don't want to wake her; so I type.  When we are at home, I enjoy my husband's company, watch TV, clean up the house and other things once Piper goes to bed.  I definitely value spending time with my husband over computer time, so it is a struggle.  I apologize for not keeping everyone updated as much as I probably should.

Piper has been doing well, but we have remained very busy.  We have had to go to Duke at least 3 times a week for hemo-dialysis.  She has also required a lot of transfusions lately.  She had 2 platelet transfusions and 1 blood transfusion within 3 days!!!  That's a lot for a little girl to deal with.  The last round of chemo has really wore her down as well.  She hasn't been as energetic or eating very well.  She is gradually getting better, though.  Please pray for her strength.

Wednesday will be out last day that we have to go to Duke for hemo-dialysis.  We will start doing peritoneal dialysis at home Thursday evening.  I am a little nervous, but I am sure that it will go well.  Once we get started with dialysis at home, we should only have to go to Duke once or twice a week!  I am really excited about that.

The doctors have decided to let the remaining portion of Piper's kidney stay for now.  They wanted to remove it, but decided it would be best to not remove it until time for transplant.  They have also confirmed that she only has to be cancer free for one year before they will do the transplant.  So, next year at this time, we will be preparing or hopefully recovering from her kidney transplant. 

Please pray for Piper to regain her strength and to remain healthy and cancer free for the next year!  She is a tough little girl, and I know that she can get through this next hurdle.  Her hair is starting to grow back quick, thanks to the Minoxidil (blood pressure medicine).  We hope to have hair bows by Christmas; maybe even Halloween!

Saturday, August 13, 2011

A Reason To Celebrate



Piper received her LAST CHEMO yesterday!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  It will be working in her system for 3 more weeks.  Praise the Lord!  He is Good!  He has brought Piper through this part of her journey!  We are so grateful!  She has really been doing good.  She has even started to take a few steps here and there on her OWN!  That was really exciting!  We have a lot to celebrate!

I haven't found much spare time lately, and I am sorry for not keeping everyone updated as much as I'd like.  Piper has been doing well.  We have been going to clinic 3-4 times a week for dialysis, labs, and chemo.  We will continue to go to the clinic for dialysis through the end of August.  In September, we will start administering peritoneal dialysis at home every night.  Once we get settled in with the new process, we will only have to go to Duke once a week and then possibly once a month to see the kidney doctors.

Piper has had some issues with her blood pressure over the past week or so.  She is on a lot of BP medicines at this time.  Her pressures have been elevated a lot, though.  They have prescribed her yet another medicine just in case.  We now have our own BP monitoring system at home so we can check her pressures at any time.

We still have some other reasons for going to Duke.  We have a lot of tests and scans over the weeks ahead.  Once a patient completes their chemotherapy treatments, they have to have scans to confirm that all traces of cancer are gone.  We are praying for NED (No Evidence of Disease)!  We do not have the scans scheduled yet, but I will let everyone know when they are going to occur.  Next week the "tumor board" at Duke are meeting, and they will discuss Piper's case.  There are a lot of questions to be answered.  They have to decide if they are going to declare her remaining kidney as failed or not.  They need to decide if they will remove the kidney, if it has failed.  They need to decide if she will potentially receive a transplant, and how long she has to be cancer free before she may have the transplant.  So, there are a lot of unknowns.

We are continuing to pray that God will guide the medical teams to make the right decisions for Piper's overall health.  We know that He is in control.  Please continue to pray over the next few weeks for Piper as the chemo is working in her system.  Please pray that she won't have any fevers.  Please also pray for her blood pressure to become more stable.  We know that God will provide.

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

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 www.beadsofcourage.com.

BEAD GUIDE
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! 

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.

Pictures

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.  ;-)

Tuesday

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

Friday

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 care.com.  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. 

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

Wednesday

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.

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

Platelets

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

Surprise!

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. ...so, 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

Monday

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. 

Monday, March 21, 2011

How is Piper doing?

Everyone is asking me.... "How is Piper doing?"  ......  Piper is doing well today.  She is really having a tough time eating, though.  We were able to get her to drink the pediasure today, but she isn't eating solid foods.  It's so tough because she isn't able to tell us how she is feeling or if she's experiencing nausea.  She still seems very happy, though.  She smiles and laughs a lot! 

She even had a fun evening with Papa and Nana.  They went for a ride in the red wagon, and enjoyed some time outside!  I am so grateful to have "Papa" and "Nana" so close.  They watched the girls tonight so I could join my Monday night Bible study group.  I haven't been able to go for the past 2 weeks, and I really missed the time with my friends!!

We don't have to go back to the Dr. until Friday.  We go to Duke every Friday for labs and chemo.  We have a few more weeks before they will do another CT to see how things are progressing.  We pray for good results!

Sunday, March 20, 2011

So Far So Good ...

So far, Piper is handling her treatment well.  We go to clinic each Friday for chemo.  Piper hasn't had any major side effects yet.  She has not lost her hair yet, not that she has much to lose.  She has to take medication for high blood pressure each day.  Apparently, high blood pressure is something that is common with patients with wilms tumor. 

She is adapting to her new room well.  We had to hang room darkening curtains in her room to block the outside light.  Our new neighborhood is a lot brighter at night!  We are struggling with transitioning her to table foods.  She doesn't seem to want to eat anything with texture.  We have been struggling with this for a while now.  She will eat pureed baby food, but nothing with 'chunks'.  We met with a nutritionist last Friday.  We were advised to have her start drinking pediasure each day.  ... we were told not to stress over the table food issue now...  just to get through the treatments first. 

She is doing well overall, though.  She continues to be a very happy little baby girl!  We are truly blessed, and we continue to pray for healing and happiness for Piper!

Wednesday, March 9, 2011

Do We Have Enough Going On?

Here is what the rest of our week looks like....  Today, pack boxes and try to live as normal a life as we can.  Tomorrow morning, Duke for labs ... then finish packing our house.  Friday morning, Duke for chemo .... then go close on our new home ....  then have a few small repairs done at the new house...  clean all of the bathrooms, kitchen and floors in the new house ... SLEEP!  Weekend ....  Move! 

I pray that Piper will be feeling well through the rest of the week and the weekend.  She has been doing well this week so far.  I have learned that when God hears you making "plans", he chuckles.  ... so let's pray that he will help these plans to go as smooth as possible.  We are fortunate enough to have some awesome helpers for moving day!  ... and we'll have grandparents to help move, unpack, clean, and entertain the little ones!!

Hmmmmm......  what will we do on Monday?  ;-)

Monday, March 7, 2011

There's no place like home...

We were released on Saturday afternoon. Piper seemed to be doing quite well. Last night she started acting like her tummy might be upset and this morning she has thrown up twice.  We have an appt tomorrow morning at the clinic for labs. We also have another appt on Thursday morning.

We are scheduled to close on our new house on Friday, so we are trying to finish packing the house to move this weekend. I hope our family can handle all of this stress. We will have help, so we are not doing it alone.

Please pray for our family this week. I know He is listening. Thank you!

Saturday, March 5, 2011

She Rested!

Piper slept all night long. In fact, she is still sleeping. Mommy even got some rest herself!  ... we are ready for another big (and blessed) day.

Friday, March 4, 2011

Surgery went well

Today was a very full day for Piper. This morning the CT scan went well. They had to sedate her, so it was a bit tough for Mommy and Daddy to watch. We stayed until she was sedated, and then we went and grabbed a late breakfast at the bagel shop in the hospital. When we returned Piper was still a little groggy, but doing a lot better.

This afternoon Piper had surgery so they could place a port in her chest. This will make it easier on her when they're drawing blood, administering chemo or giving her contrast for CT scans. She did very well with the anaesthesia and the surgery. The staff here at Duke is awesome!

Papa Bell and big sister Emma came to visit this afternoon. Piper was not really quite herself yet, but we still enjoyed their visit. Now Piper is resting quietly, and I am hoping that we can both get some sleep tonight.

Tomorrow ... round 1 of chemo .... and possibly going home!