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!

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. 

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! 

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!

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!

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