It's been a while!

Sorry it has been so long between posts! It has been a crazy month. We rode another "rollercoaster" in the past few weeks. Kaelyn's tonsils have been huge and this is the first sign of PTLD (Post-Transplant Lymphoproliferative Disorder) AKA - cancer in the lymph system that people can get after transplants due to lowered immune systems. She also has been catching so many colds, and has had tummy pain for quite some time, which happens to be other symptoms of PTLD. So we had her labs checked for EBV (Epstein Barr Virus) which is the main cause of PTLD in transplant kids. 95% of PTLD cases are caused by EBV, which in a healthy no transplant person can cause Mononucleosis. Also most people have the dormant EBV in there body already. Anyway, her test was negetive for EBV, thank goodness. We are considering have her tonsils removed. Tonsils are just a factory and storage facility for bacteria. They are so huge that she snores at night and does complain that it is hard to swallow. One more surgery to add to the pile. But I will take tonsilitits to cancer any day!!!

Besides all of this craziness... we really had a wonderful Christmas. The kids had so much fun! I think it is more fun for me to watch them now that they are older! They are so excited! We also drove to WA on Christmas day to be with family there for about a week. That was great to go back to visit with all of the cousins and family. I also go to visit some really wonderful friends that I miss dearly. That was good for my heart.

Kaelyn and Jacob got to go iceskating and swimming while we were there. That was really a hoot! Jacob loved iceskating, or ice falling in his experience! He would look like he was trying to run on the ice! Run, run, run, fall....slide.....laugh and back up again! Kaelyn only went around the rink a few times, but she really had a blast with her cousins. She more enjoyed the swimming. It was her first time in a pool post tube removal! She was our Little Mermaid, it was wonderful!

The only downer to the whole trip was when we lost our luggage on the freeway! Boy was that exciting. We had a luggage rack thing on the top of Wade's parents car. It was really windy in Snoqualmie pass and the next thing we knew our luggage had freed itself and went rolling on the freeway, run over a couple of times and exploded. Wade's parents clothes were pretty much destroyed. Luckily mine and Wades were in a heavy duty suitcase and were okay. We lost a few things, including Jacobs precious collection of WII games. I think that was the biggest fatality. He just about cried when we told him, and honestly so did I (that's a lot of $$ spread out on I-90) But Nintendo has a really good replacement deal. If you send them the broken disks they will sell you a new one for half price. So we were able to get atleast a few back for him. One of the games was what he had just gotten for Christmas...but we should be getting the replacement soon. Luckily the WII console and all of the kids clothes and toys were in the cab of the car with us instead of the lugguge rack. Anyway...life goes on, and WII will be fine! ;)

I must write some of the thankfulness I have in my heart for the many blessings that we have received. I think I would be have broken down with out my faith in our Savior and in a loving Heavenly Father. I know they have carried me through the most difficult moments of this journey. Kaelyn has been carried in the arms of our Savior through most of her little life. This I am most greatful for.

I know that He lives and loves us individually.

Love to you all...

Angie

CT Scans and AFP

Kaelyn had her three month AFP drawn last week. It was at 3, which is still in the normal range of 0 - 15. It has been always 1 or below since her last chemo treatments two years ago, so the little bump does flag my worry. But I have to remember that it is still in the normal range, so I am going to try and not worry about it. Another good thing is that she had her 6 month CT scans done on Thursday and they saw no evidence of cancer. YIPPEEEE!!! This means that Kaelyn has been cancer free for two whole years!! That is just amazing. What a wonderful Christmas gift, I don't need anything else....

She has been battling yet another cold this past week, and contracted pink eye in both eyes. Her eyes are looking much better after a few days of treatment, but she still cannot shake the cold. Each day she gets a little better though. I think she will be healthy and well next week for Christmas (she asks me every night if tomorrow is Christmas - I think she is just a little excited!).

The words of the hymn Count Your Many Blessings has been repeating in my head for about a week now, "Count your many blessings, name them one by one - and it will surprise you what the Lord has done...." I am truly surprised and eternally greatful for the many blessings the the Lord has seen to grant me and my little family. I love the Savior...He has been my Light and Strength for the past four years. I know that whatever the future holds for Kaelyn, that He will be there to share in the joy, burden and sorrow of what may come. My Kaelyn is a miracle...and I am forever thankful for the time we have shared through the Grace of our Father. I pray that we will continue to be able to share good news on this blog. It has been so wonderful to write of all the good, happy times.

I wish you all a wonderful Christmas, count your many blessings...

love,
Angie

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