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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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!

March 2, 2011

Piper celebrated her first birthday. She had her 12 month ultrasound today. Unfortunately they discovered the wilms tumor. There are actually tumors on both of her kidneys. She has been admitted to Duke. Today (3/3), she has had a CT scan and an ekg. She will have surgery this afternoon to place a port in her chest. The port will be used to administer the chemo.  We are scheduled to start chemo tomorrow. We'll have a few rounds of chemo. Then we will have the surgery to remove as much of the tumors as possible.  She is doing well considering all she has been through. The people at Duke are doing a great job. They think she will be released tomorrow if all goes well. I'll post more when we know more.