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!!!

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.

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!

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. 

and......

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! 

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!