Doing great!

Kaelyn is doing really well. I am so glad that, so far, she is healthy for Christmas. I was thinking this morning that this December marks her two year no cancer anniversary!!!! Celebration!! I can't believe how amazing that feels. She is healthy, happy and cancer free. What more could I ask for.

I did post a few more pictures up on our photo gallery. There are some on there from Halloween, putting up our Christmas tree and our first Utah snow storm.

Kaelyn is due for a CT scan and her 6 month oncology visit this month, which as always, makes me a little nervous. But hopefully this will all be well and we can keep counting the no cancer months!

Love to you all,

Angie

Kaelyn is home...

Kaelyn was discharged on Saturday. Her second set of blood cultures done before antibiotics was negative...so they are very confused on whether she actually had a blood infection or if the first culture was just contaminated somehow. She does have an ear infection and a bladder infection...thus the fevers. So, she is fine.

Jacob has a double ear infection and a sinus infection. That boy never complains. I didn't even know he was sick. He was stuffy, but he has bad allergies so I just chalked it up to that. On Friday, while I was in the hospital with Kaelyn, the school called my dad to have him pick up Jacob because he said his ear hurt. My mom made him a doc appointment and they said that he had the worst ear infection that she had seen so far. I couldn't believe it! He is just the sweetest kid. I don't know if he just has a high tolerance for pain or if he thought he had to be brave and strong since Kaelyn was in the hospital. I sure love that boy...I only hope that he knows he is just as important to me as Kaelyn.

Well...the sick Perry household is all on antibiotics, except Wade. I, too, have a sinus infection. Luckily we are on the down side of the slope now.

Love to everyone!

Angie

Positive blood cultures

I knew something more was going on than just a cold...mommy-sense...this afternoon Primary Children's called and said that her blood cultures grew out some bacteria. So back in to the hospital we went, this time to stay for a while.

She is definitely not feeling well. She fevered all day, so hopefully after starting the IV antibiotics she will feel a little better tomorrow.

I will update when I can...

Angie

not feeling good...

Kaelyn and I spent most of the night at Primary's ER last night. She had a pretty high fever, 103. I had taken her to her pediatrician during day. She (and I) have been pretty sick with a cold. I thought maybe hers had turned into a sinus infection. Her belly was more firm than normal, so we took an X-ray - they were afraid that maybe she had a bowel obstruction, but couldn't tell because her colon was very impacted. And her fever started to peak even on tylonal. So into the ER we went. It was not fun. They gave her an IV (which Kaelyn hates), drew blood for liver functions and cultures, X-rayed her chest, gave her an enema (I have never seen one before and hope that Kaelyn never has to have one again....) and sucked the mucus out of her nose to test for common viral infections. Needless to say, Kaelyn was not a happy camper. Her labs came back a little elevated, but not anything to drastic. Which is good news. She did not have a bowel obstruction more good news. The consensus - common cold. So I was relieved and a little reluctant to believe the diagnosis because of past experience. So I made them keep her until her fever went down. They wanted to send us home while her temp was at it's highest! I couldn't get the images of her going into septic shock if we went home out of my mind - so we waited. After about another hour, her temp went down and we went home. She is still miserable and fevering, but I believe that she really does just have a bad virus. You just have to be so careful with fevers...it could mean so many things in our Kaelyn...rejection, colangitis, bacteremia, not just cold.

I think I just rambled that in a very jumbled post...hopefully you can make sense of it. Kaelyn is okay, just commonly sick.

To switch subjects, I have some friends here in Utah that have been through very similar experiences with their son - Stage IV Hepatoblastoma and liver transplantation. Someone took advantage of their story and tried to pass it off as her own and got caught (thank goodness). It just infuriates me! One of he local news channels here in Utah is airing their story tonight. If you would like to watch I posted the link at the bottom of this post.

If you can not get to it via the link, go to www.kutv.com. For those of you out of state, you will be able to see the story in its entirety beginning Friday morning.

The story is called "From Healing to Heartbreak". I hope it opens peoples eyes and hearts....love to you Megan, Jason, Tanner and Family...

Love,

Angie


ctrperry@comcast.net would like you to see this video:

http://www.kutv.com/content/news/specialreport/story.aspx?content_id=89b1ba3c-08db-4a91-b289-4fec730515c7&articleID=30172&articleID=30172

Personal Message:
This is the link to Healing to Heartbreak

SenderEmail: ctrperry@comcast.net

Good news...

I apologize for not updating in a while...no news is good news, right?! Well, I do have really good news. Kaelyn had her first labs and clinic appointment since removing her drain last month and (drum roll in the background) her liver numbers are excellent!!! Probably the best they have ever been! I can't tell you how relieved I was when Dr. Book reported the numbers to me, even she was fairly surprised. She stated that she really expected to have seen us in sooner with problems, and I admitted that I did too. Kaelyn has had one month free of any tube like medical stuff extending from her body and is doing amazingly well. It has been a wonderfully good month.

Love to all of you,

Angie