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, November 7, 2012

Fall Pictures

Piper was all ready for church last Sunday!!!  She loves getting dressed up!

At Duke (September) coming out of sedation after CT.  Such a cutie when she's sleeping!

The Halloween crew.  They all really enjoyed Halloween this year!!!  Piper can't eat chocolate because of the kidney disease, but she didn't care.  It was all about the experience!!!  She was buzz-buzz-buzzing all around the neighborhood!!

Piper and her dog Buddy.  She recently renamed him "Buttons"!

Piper waiting for her eye appointment at Duke.  She was such a good girl that day!

Piper and her big sister Emma really love playing outside!!!  Emma got a scooter recently for her 4th birthday.  Piper is always quick to steal it!

Time To Relax and Breathe ....

October was a tough month.  We didn't receive the news that we were expecting from UNC.  I really let it get me down for a week or two.  I'm better now, though.  We did a lot of talking and praying.  We want to make sure we're making the right decisions for Piper and we're doing things because it's God's will, not just ours.  We considered getting a second opinion.  I started researching the insurance issues and the hospitals that our insurance company would approve of.  I became quickly overwhelmed.  I felt like I was spending every moment on the phone.  I was trying to get the correct information out of the not so informative insurance company.  I was battling with Duke billing.  I was dealing with UNC billing.  We are constantly having bills submitted incorrectly to the insurance companies, and it's a lot of work to convince the hospitals to resubmit them correctly.  I was also juggling, of course, the housework, the laundry, the homeschooling, and all of the doctors appointments.  Oh, and the holidays are coming....  = STRESS overload!

So, my wonderful husband and I made a decision.  We're not going to seek a second opinion at this time.  We are going to wait until December and let UNC redo Piper's scans.  They will re-evaluate then, and we will re-evaluate then as well.  For now, we are just going to relax and breathe.  We're going to try to spend our days just being "normal".  We've scheduled a vacation, and we're going to enjoy a relaxing holiday season. 

We appreciate the continued prayers and support.  I will post some new pictures soon!!!

Tuesday, October 2, 2012

UNC's Response

We finally received the call from UNC. They have agreed to list her as "inactive" on the transplant waiting list. They will not approve her for surgery at this time. They want to re-evaluate in 3 months... They're stalling... This is not the news we wanted. I have a feeling that she isn't supposed to be at UNC. Please God tell us where to take her.

Waiting Stinks...

On Monday, October 1st at 3pm, there was a meeting scheduled for Piper's transplant team (doctors, surgeons, ...) to review her case.  They were supposed to decide if she could be cleared for surgery or not.  No one has called to tell us anything.  I called and left a message this morning with her transplant coordinator, but no response yet. 

We also still haven't received approval for me to donate yet.  The doctors are requiring another visit for me before they will review my case again.  I have an appointment next Tuesday afternoon to see the nephrologist. 

So, we wait....  and wait ... and wait.... and wait....

Prayers for patience and God's hand to guide the staff at UNC would be much appreciated!  I'll post again when I hear something.

Friday, September 14, 2012

It's Been A Long Week

Piper watching the "fishies" at Duke.

I am so tired of driving back and forth to hospitals!

On Monday, I had to go to UNC to visit a social worker.  This is just one more of the items to check off of the list.  I am not sure what the social worker was really supposed to do for me.  She asked me the same questions that everyone asks me, and couldn't really answer any of my lingering questions...

On Tuesday, Piper and I had to visit her oncologist at Duke.  We need him to view her CT scans and give his OK for her to have surgery; meaning her scans show no "evidence of disease".  Well, her scans do show this, but UNC didn't actually scan everything they were supposed to.  They only did a CT of her lower abdomen.  So, Piper has to have another CT done on the 24th.  We're having this one done at Duke.  They can read the scans pretty much the same day.  This is very frustrating as she will have to be sedated again, and that is such an ordeal.  She simply will not lay down with other people around, so sedation is necessary.  I am grateful that we were able to get her scheduled so soon.  It typically can take weeks to get on that schedule!

We had Wednesday off...  no appointments...  we stayed home and learned the lowercase letter "d"!  Emma was thrilled!!!

On Thursday, I had to drive to UNC for an appointment with a psychologist and the "final" appointment with the surgeon.  Well, that was the plan anyway...  On my way to UNC, I received a call.  The psychologist had to cancel her appointment.  I waited weeks to get in for this appointment.  I was not happy!  I explained my "unhappiness" to the caller, and she kindly agreed to "see what she could do".  The surgeon agreed to meet me earlier, so I didn't have to sit at UNC for hours waiting for that appointment.  The surgeons were wonderful.  They said their schedule is pretty much open at this point.  They do all kidney transplants with living donors on Tuesdays.  Once everything is approved, we should be able to schedule surgery quickly; possibly the following week!  She stated that it is very likely that surgery will be in October!  Now, if we can just get Piper's checklist completed, we will be doing great! .........  I received a call later in the day that the psychologist can see me this morning (Friday) at UNC.  So.....

This morning (Friday), I get to drive to UNC again!!!  (lucky me!)  I am fairly certain that the psychologist will be asking me the same exact questions that everyone else has asked me.  I will give the same answers, and I will come home.  This, however, will be my last appointment for my donor workup.  I should then be approved next week.  Please pray that this happens!!!!  It will be so nice to have something "done".

This has been such a roller coaster.  There are so many unknowns that you have to deal with while on this journey.  It is very mentally and physically exhausting.  I am so grateful for all of the prayers and support for our family.  I'll try to post next week as soon as we hear something!

Monday, September 10, 2012

Here's What We Know So Far ...

So, we still don't have all of the answers that we need yet.  We do know a few new things, though. 

As for the "living donor" workup that I've been going through.  I have not been "officially" told by the doctors yet, but the coordinator that I'm working with has told me that my results have all come back normal for all tests, including the special test to determine if my kidney stone was from a hereditary condition or not.  I am so excited about these results.  I have to meet with 2 more people on Thursday, including the surgeon.  That will be the last appointment before I can officially be approved!  Praise God!!!!!!

As for Piper...  she had her CT on the 5th, and she did awesome.  Her results came back great.  Nothing has changed.  We had never received any word on the meeting with the surgeons, so I talked to her doctor last week.  I am being told that there are a few things they want to see ....  They wanted to see a clear CT that showed 1 year "officially" cancer free, they want Piper to have one more visit with her oncologist at Duke so he can write a letter clearing her for surgery, and then .....  they will re-present her case to the board towards the end of the month.  We were able to schedule Piper's appointment with her oncologist for tomorrow.  He is awesome, and he always does whatever he can to make things easier for us!!!  So ....  I am being led to believe that once the team sees all of these things, they should be ready to "list" her.  That means that she will be put on the actual kidney transplant waiting list.  If a kidney was to become available before surgery was scheduled, then she could have that kidney instead of mine.  Otherwise, we will proceed with surgery, and she will get one of my kidneys.

So, please be praying for God to bless our family with patience as we are (hopefully) nearing this goal.  It has become quite difficult to feel content and at peace in the midst of this "storm".

We also have some amazing news about Miss Piper!!!!  She is so awesome, and she just keeps reminding us of it!  A little over a week ago, we changed her bed to a toddler bed.  We were extremely nervous because of all of the dialysis tubing and her machine, but she has done amazing with it all.  She stays in bed, and she waits for us to get her up in the morning.  This is such a huge step in the right direction. 


Piper has started eating better and better.  On Saturday, she didn't even eat any baby food!  She ate (grilled) chicken nuggets and applesauce at Chick-fil-a, and she ate grilled chicken and steamed broccoli for dinner at Olive Garden.  She chewed and swallowed the food!!!!  This is such a small thing for most 2 year olds, but for Piper, this is a MAJOR milestone!  We are so proud of her!

We praise God for all of these milestones.  Life can be really ugly if you forget to look for the blessings in your life! 

Sunday, August 26, 2012

Lots of Waiting...

We've been doing a lot of waiting, and we have a lot more to do.  God has really been blessing our family with an abundance of patience.  It is getting harder, though.  We are ready to put some of this behind us, and live a "somewhat normal" life for a while!

Piper has officially been cancer free for over a year now.  She has her official scan on September 5th, but her last chemo was on August 12th, 2011.  The doctors have been telling us all along that she needs to be cancer free for 1 full year before she can be eligible for a new kidney.  There is, however, one surgeon who suddenly isn't so comfortable with this.  He feels she should wait for 2 years cancer free.  I don't know anyone (her nephrologist,, other surgeons, her oncologist) that believes this, so tomorrow (8/27) there is another meeting to discuss.  Please pray that God will work to change his mind!

I have been going through the tests so I can be approved as Piper's living kidney donor.  I have passed all of the blood tests.  We are the same blood type, the cross match was good, and my blood counts are all great.  I have passed the chest x-ray and EKG.  I have a good heart!  I passed the renal ultrasound and the CT.  All of my organs look good, and I have 2 kidneys.  (Apparently a percentage of people are born each year with only 1 kidney, and some never know it.  They only find out if scans are done.  Interesting .....)  It is a good feeling to know that I am overall in good health!  ...............  However, about 2 weeks ago, we ran into a little hiccup.

I woke up at 3am, and I was in PAIN!  I thought I was having a muscle spasm in my back, but it grew increasingly worse.  I finally decided to go to the ER and find out what was going on.  I have never been in so much pain in my life.  The only thing comparable was childbirth.  Ugh...  I thought for sure that I had appendicitis.  I was wrong.  I had a kidney stone.  That is not what you want to hear when you're trying to be a living kidney donor.  Fortunately, it was small, and it passed without my even knowing it.  I just stopped feeling the pain, and I guess it was done...  This does not automatically rule me out as being a donor, though!!

The team at UNC has agreed that I need one more test.  This will be the test that tells if I can donate or not.  If the test proves that I had the kidney stone because of a hereditary condition, then they will probably reject my kidney.  They would be afraid of my getting additional stones in the future.  If the test shows that I do not have this hereditary issue, then they should approve me as being the donor!  We won't know the results of this test for a couple of weeks.  Prayers are much appreciated.  I am feeling a little anxious about this one.

If I am not approved as the donor, she will go on the waiting list to receive a kidney.  By the way, if you're not an "organ donor", please consider changing this.  There are so many organs that could be shared.  On average over 2 million deaths occur in the US each year.  There are over 100,000 people on organ waiting lists.  About 18 people will die every day waiting for an organ.  1 organ donor can save up to 8 lives!!!  Interesting, but really sad facts.  Click here to register as an organ donor.

Piper - She is doing amazing!  She has started to eat more, and she's even eating some textures and swallowing them!!!  She is running, jumping, climbing and doing somersaults.  We can't hold her down!  She is saying a lot of words now, and she is developing quite a sense of humor!  We couldn't be happier with her improvements!!

So, now we wait a little longer.  The results will all be in soon, and we'll have a better idea of what our fall/winter will look like.  No matter what the results are, we know that God has this in his hands.  We appreciate any and all prayers for Piper and our family.  She is such an amazing little girl!

Tuesday, July 17, 2012

Summer 2012 Pictures

Piper got her first pair of real eyeglasses on June 1st.  They are transitions so they turn into sunglasses when she is outside.  She does really well with them!

Piper's first haircut!!!!  June 5th

At the family reunion ...  Piper was playing peek-a-boo with Aunt Terri.  She had no idea that the bow was in her hair.  It stayed in all day!!!!!!!!!!

Family reunion ...  Piper was playing the pick a duck game with Aunt Shelly and her cousin Zachary.

Family reunion ...  Piper and Emma were playing the ring toss game.  They allowed Piper and Emma to cheat a little since they were a bit smaller than the other kids.

Family reunion ....  It was a hot day, but everyone had a lot of fun!!!

 At UNC - Piper really likes the big ball drop machine in the lobby!

At the Grandfather Mountain Highland Games.  Emma, Poppa Bell, and Piper.

Busy Summer!

We have had a very busy summer so far!  It is so nice to be able to go and do things with the family!!!  We only have a few doctor appointments each month, so we have a lot of free time! 

We took a day trip to Wrightsville Beach (Wilmington, NC).  We all had a great time!  It took Piper a little while to get used to the sand, but by the end of the day, she was smiling!  Emma loved the water!!!  We had to head home in the afternoon, though, so Piper would be home for dialysis in the evening.

Mommy and the girls took a trip to Pennsylvania to visit family.  We spent 3 nights, and we all had a fantastic time.  Both of the girls were covered in dirt and sweat (a sign of a good time) by the end of each day.  We got to visit with Grandma and Aunt Shelly, and the girls got to see their cousins!!  We also went to the family reunion.  It was so nice to see all of our family.  It's been a long time!

We took a weekend trip to Grandfather Mountain in NC for the Grandfather Mountain Highland Games.  The Bell's are of Scottish descent, so it was nice to take part in this gathering.  Our family (Poppa and Nana) hosts the Bell Clan tent at the games.  Everyone was dressed for the occasion, including Emma and Piper.  We look forward to attending in future years to teach the girls about their family history.

We have also started the tests and scans required before transplant for both Piper and myself.  We have received confirmation that our blood typing is compatible.  Piper's appointments have all been going well. She has even had her dialysis time decreased from 11 1/2 hours each night to 10 hours!!!!  This was such a blessing!  If all goes as planned, we are expecting the transplant to occur around September or October. 

We are so grateful for the continued prayers and support.  We praise God for getting us through these past years, months, weeks and days. 

I'll try to post some summer pictures soon!

Monday, May 21, 2012

9 Months Cancer FREE

Cancer Free... those are such sweet words!  I know how blessed we are to be able to make that statement. 

Piper had her 9 month off treatment scans on Monday; May 14th at Duke.  Things went well overall.  It was much more stressful than usual, though.  Typically, everything (including sedation with a ketamine injection) is handled in the peds radiology department.  It's a fairly easy process. 

Well, they decided to make things really interesting this time.  The doctor in peds radiology wasn't comfortable giving Piper ketamine because she has a peritoneal dialysis catheter.  So, they made us go to the 3rd floor for general anesthesia.  As most of you know, general anesthesia is not just a quick injection.  They treated the case like she was going in for full surgery.  It took forever, and I didn't care for the anesthesiologist.  They also made her go through the whole routine of drinking the contrast.  We were finally ready for her CT.  We all walked back down to the 1st floor (where we were to begin with), and she was ready for her scans.  Typically, they give me a cover so I can stay in there with her.  This has never even been a question before, but the anesthesiologist chose to lecture me and make me feel like I was a burden because I wanted to stay beside Piper the whole time.  He continued to lecture me explaining that I should wait out in the hall, and they had it all under control.  I advised him that I appreciated his opinion.  ....  then the kind nurse handed me the cover up, and I stayed by my daughters side the whole time.  The doctor still continued to groan about it, though.  The nurse told me she would stay by her child's side too.  That made me feel better.

Once we finally completed the scans, she had to be taken to post-op recovery room until she was awake and ready to go.  Well, this all occurred right at nap time, so she was not in any mood to wake up, get dressed, and get moving.  I had to do a little coaxing.  She finally cooperated.  We then had to go visit her oncologist for the CT results and exam.  CT results show "no evidence of disease"!  Basically, the kidney that she has remaining has shrunk so small that it's barely visible on the scans.  So, that is good news.  If there aren't any cells growing, then there aren't any bad (cancer) cells growing!  Praise the Lord!

She is due to have her next scans in August.  She has an eye appointment with her ophthalmologist this Thursday, and she continues to see the nephrology team at UNC every month.  We're still hoping for a September/October transplant.

Please pray that all continues to go well for Piper.  She is growing so fast, and she is getting smarter every day!  The prayers have been working.  She's come a long way in the past year. 

Tuesday, April 24, 2012

She's Looking Good...

Piper has been doing very well lately.  Here's what's been going on since Piper turned 2.

First, the hair!  Oh, the hair.  It is growing!  It is growing in thick, and it is beautiful!  She insists on wearing a bow every day.  She gets a little upset if she doesn't have one.  We're still only able to use the "baby bows", but they look pretty!

UNC - We have successfully transferred Piper's nephrology care to UNC.  Her new doctor has agreed that Piper only needs to be cancer free for one year prior to transplant surgery.  She will be cancer free for one year on August 12th.  They have started to run the tests to prepare for surgery.  At Piper's appointment recently, she had her routine visit with the Dr., she had a ton of blood drawn for labs and random blood tests that must be run, she had a chest x-ray, and she had an EKG.  It was a busy day, but Piper was an angel through it all.  She knows the drill.  When they tell her to lift her dress so they can see her tummy, she lifts her dress.  She typically lays still so they can get the scans without issue.  For her x-ray, she had to sit up straight in a chair by herself, and she did it with no problems.  I am quite proud of her!  The EKG tech said she was his best patient!  Her labs came back with one "funny" number, so we're going to go this morning to have one redone.

Dialysis - Dialysis has been going well.  We have developed a good routine.  It's not ideal, but we have made it work.  I am thrilled that Piper will stay in bed for the duration.  She has to be on the machine for 11 1/2 hours each night.  We put her to bed at 7, and she gets up around 7.  (Thank you God for giving us children that don't mind staying in bed for 12 hours!)  We are facing a tough decision, though, regarding her bed.  Typically, she would have transitioned into a toddler bed by now.  We still have her in the crib because we're afraid she'll get out of bed and mess with the machine or try to roam off too far.  I don't think she could unscrew the tubing, so she couldn't roam but so far.  I'm just a bit nervous about it.  I'm also nervous about keeping her in the crib much longer.  She's getting big, and I am so afraid she is going to try to climb out.  If anyone has any suggestions, ideas, experience... with this, please let me know!

Food - Piper has started to show some interest in a few "real" foods.  She has always eaten nothing but Gerber 2nd baby foods.  She has been seeing a speech therapist for a few weeks now.  We need to teach her to chew and to swallow textures.  Sometimes we can get her to put textures in her mouth, but she never swallows.  Please pray that Piper will start eating real foods soon.  I think she would be much happier if she didn't have to eat purees for every meal.

Me - I submitted my paperwork last week to be a living donor.  I am very excited about this opportunity.  Please pray that all goes well with the tests, and they will approve me.  If we are able to do this, she would not have to wait on a list.  We would be able to schedule the surgery, and have it done much quicker!

Piper has also made some big strides lately!  She now goes to the church nursery every week during church.  She has been doing well with this for over a month now.  I am so happy that she feels better about this.  It's not an ugly battle.  She typically cries for a minute or so, but they say she is okay once I leave.  We are blessed with an amazing group of volunteers for childcare at our church.  Big sister, Emma, loves everyone so much.  She can't wait to go each week!  Piper has also developed a love of dresses.  She prefers to wear a dress each day now.  I picked a dress the other day, and I asked her if she wanted to wear it.  She said "no".  I asked her to go to her closet and show me what she wanted to wear.  She chose her Snow White princess costume! She is definitely becoming a girly girl! ...  We settled on a simple flowery dress that would allow her to play easier.

She is also starting to say a lot more.  She isn't speaking in sentences yet, but she is repeating a lot of what she hears.  Emma teaches her words every day.  They will be playing, and I will hear Emma working on a new word with her.  "Piper, say "broccoli"", and yes, Piper now says broccoli.  Emma is quite a teacher!  That's a little scary since Emma is only 3. 

I am so grateful to be where we are right now with Piper considering where we've been.  She is proving to me every day that God is with her; and with Him, she is bigger and tougher than anything that she has or will face.  She is one tough cookie! 

Sunday, March 4, 2012

She's 2!

Piper turned 2 years old on Friday!  Yeah!!!!

Piper had a wonderful day on Friday.  Her Daddy bought her a beautiful dress to wear on her birthday.  We went out for dinner, and she finished the evening with a little angel food cake and cool whip!  On Saturday we had a small party to celebrate.  Her grandparents came and celebrated with us.  She had a wonderful time!!!  She had more angel food cake (cupcakes) and cool whip.  That's the only cake that she is allowed to have because of her diet restrictions.  She liked it, though!

She was sick a few weeks ago with a virus.  She ended up having to go to the ER for fluids because she was dehydrated.  Since then, though, she has been doing wonderful!!  As soon as she got well, I got sick, and now I'm doing fine.  Her big sister had a fever this morning, though.  .....  maybe someday we'll be able to return to church when we're healthy!  I am ready for all of these sick days to be over so we can start getting out and enjoying the spring weather that is coming our way!  Please pray for healing for our family!  Thank you!

We thank God for bringing healing to our little girl throughout the past year.  It is such a blessing that she is here with us today, and that we were able to celebrate her 2nd birthday at home cancer free!  We are so blessed!

Wednesday, February 8, 2012

February Update

A lot has been happening lately...  so here's an update.

Piper's nephrology appointments have been going well.  She had to have her dialysis catheter tubing changed because it's been 6 months.  The nurse changed it a few weeks ago.  A few days later, Piper developed a tiny hole in her tubing.  We went to the ER to have it repaired.  They fixed it.  They had to drain the fluid from her tummy that we leave in there every day, in case it was contaminated because of the hole.  They replaced it with fresh dialysis fluid, and they added an antibiotic to make sure to kill any possible germs lurking around....  She immediately broke out in a rash all over and started sweating!  We had to drain her tummy again, and they gave her some oral benadryl.  That did the trick, but they made us spend the night just to make sure nothing else was going on.  So, we're thinking it was a reaction to the antibiotic.

Yesterday (2/7), Piper had her 6 month off treatment ultrasound.  We are pleased to share that there is still no evidence of disease.  Nothing but good news there!  Her oncologist says she looks good, so she'll go back in 3 months for the next scan.

We did, however, receive some frustrating news on Monday.  Our insurance company called to tell us that they will cover Piper's medical treatments at Duke, but they can not cover Piper's transplant surgery at Duke.  They want us to transfer to UNC for Piper's nephrology needs and for the transplant surgery.  So, we're a little frustrated because Piper has been going to Duke for all of her "advanced" medical needs since birth.  She knows the doctors, nurses and the surroundings.  We are choosing to look at this as God's way of looking out for us, though.  I keep telling myself that He knows where she can get the best treatment, and He will take care of her.

I signed the paperwork yesterday to share her medical records with UNC.  We are waiting to find our when her first appointment will be scheduled.  We are scheduled to see the nephrology team at Duke in a week or so. 

She has been progressing so well lately.  She is almost running now.  She climbs on everything, and she is acting like a typical kid.  Soon we'll be celebrating her 2nd birthday.  What a celebration it will be!

Friday, January 27, 2012

Piper's Story - The Quick Version and the Duke Radiothon

I added a link to the top of the page called "Piper's Story - The Quick Version".  I know that a lot of people want to know Piper's story, but they don't want to read through every blog entry for the past 2 years....  so, I wrote a summary of her story.  This is also the summary that I shared with Duke for the Duke Children's Radiothon.

Mix 101.5 (WRAL-FM) will be at Duke Children's Hospital & Health Center on February 14-15, 2012.  For the past 17 years, Mix 101.5 has shared the stories of children and families that have been helped by Duke Children's.  Their goal is to raise money to provide games, toys, crafts, meals, etc. for the kids and their families.  These "seemingly" small things make a huge difference in the day for a child that has to be stuck sitting all day for treatments.  There aren't any fun treatments, but these gifts help bring a lot of smiles!  Please consider listening to the radiothon and/or making a donation to help these children and their families. 

Duke Children's Hospital & Health Center Radiothon

Read some of the patient stories.

Mix 101.5 Radiothon for Duke Children's Hospital on Facebook