Wednesday, March 25, 2009

Kehli Update

Here is our monkey! I have had a lot of questions about how Kehli is doing so I thought I would give an update on here. I have also put a sidebar on here with her platelet level updates so you can check up on her there too. So, here's the story:
In January, I noticed Kehli had a "rash" all over her. A few days later I noticed she was covered in bruises too. She was also having severe migraines and horrible leg pain. I got on the internet (what did we do before the internet?) and found what her rash was. It was petechiae. I called the doctors office and told them what her symptoms were and they got her in right away that day. I was really nervous going to the doctor, but I wound up feeling worse when I left. The doctor was very worried. They were testing Kehli for Leukemia. The doctor ran the tests STAT and so luckily we got the results in about 3 hours. It was NOT leukemia....YEA!! However, I have to confess that those were some of the longest 3 hours of my life....very scary! The bloodwork did show that her blood platelets were 86,000. The normal range is 155,000-400,000. So, they set up an appt. for Kehli with a Dr. down at Riley Hospital for Children with a hematologist/oncologist. We have had to have her blood tested 1-2 times a week since then. Her levels went down to 14,000 at one point.
For anyone who might be wondering, your platelets are what helps your blood clot. So, when your platelets are low you are at an increased risk of bleeding out. Under 20,000 is considered a medical emergency. She can't really do anything when she gets low because if she gets hurt, she can have internal bleeding that we don't see. According to the dr's if she's under 10,000 she is at a much greater risk of spontaneous internal bleeding....not a good thing! :)
Her platelets eventually started going back up and got back up into normal range. However, her last blood test showed her platelets were back down to 59,000. Her next test is tomorrow so we will see what that shows. Hopefully, she is going back up!
They diagnosed her with immune thrombocytopenic purpura (ITP). It is an auto-immune blood disorder. We are hoping it is just an accute case and not chronic. The only way they can diagnose it being a chronic case for sure is if she is still having problems after 6 months. I guess only time will tell. There isn't really anything they can do for her unless she actually has bleeding issues. Then the treatments are blood product and/or long-term steroids and they both have serious side affects. Kehli has been having serious bone pain in her legs, so the Dr. said if she needs blood product, they would most likely have to do a bone marrow biopsy first. I pray it never comes to that.
Kehli has been a trooper. She gets very tired when her platelets are down, but she is still our monkey! Thank you to everyone who put her name on the prayer rolls and who have offered prayers on her behalf! They are working, so please don't stop! I keep telling myself it could be so much worse....thankfully she doesn't have leukemia! I feel so blessed that we live here with wonderful hospitals and doctors. Riley is where Christopher was transferred when he was first diagnosed with Type 1 diabetes and was so sick. It is a wonderful hospital. I'm thankful for the internet where I can have information at my fingertips in a matter of seconds. I'm thankful Kehli's teacher has been so kind about the time she has missed from school. She offered to come to our home and help Kehli with anything she missed! How many teachers do that? I'm thankful to know that Heavenly Father is watching over her and knows what is best! :)
One last thing...a funny story. When we took Kehli down to Riley hospital, we had to take her to the hematology, oncology unit. The sad part, was there were very sick kids there. Some were bald, some had a little hair, some were wearing masks and some looked like they were on death's doorstep. There was this litle 2 yr. old girl who played with little Tayler in the waiting area. She had very little hair and was wearing a mask. After we got back into the room with the dr., they ran some mre tests on Kehli and Tayler got restless so I walked around the hall with her. Down at the nurses station was this little girl and her dad. The nurses post butcher paper all along the fron of the desk and have buckets of crayons so the kids can color all over it. So, Tayler and this little girl were coloring. The next thing I know, Tayler is trying to color on this little girl's bald head. I took her hand and told her we don't color on our friends, only on paper. Then this little girl's dad said," That's a good idea....let's color on some hair for her." It was pretty funny and I appreciated the dad making the nice, funny comment! What strength these families have to endure those horrible illnesses and the courage and strength of those little kids....beyond words.
I hope that this helped to update everyone and answer questions.
Please continue to keep Kehli in your prayers! I will continue to update the sidebar with her test results. We love you all!

11 comments:

christy jensen said...

Thanks for the update. I had no idea the trials that your family was enduring. I hope things look up for everyone. You're in our thoughts and prayers.

Dawnelle said...

Cheri,
My prayers are with you and your family! These are no small trials for your children and so hard as a mommy to watch! I freak out at the sight of blood for my kids--what strength you must have to endure this. I admire your family's courage!!!

Unknown said...

I miss that monkey and she is in our prayers - along with everyone else in your fam! She has such a great spirit about her that it was hard to remember that she is so fragile right now. Thanks for clarifying everything and posting her numbers. We will check on her tomorrow! Fingers crossed that her numbers will be huge!!!!! love and miss you all! Kehli - you are FABULOUS!!!!!! love you girl!

mom Tolmanb said...

Kehli- You probably don't know me, but we are still rooting for you. we love our wonderful family. Stay strong and rely on the Lord.You are in our prayers.Your picture is SO cute. Hope your days are bright.

OMA AND OPA said...

Cute picture Kehli!monkey girl. (cute haircut too, hahaha)
Oma got your name on the SLC prayer roll and Aunt RaeDean put it on the Twin Falls prayer roll. So you have lots of great people praying for your health right now. So don't lose FAITH!!! it is very important. Think and see yourself as well. Love and miss you!! OMA

OMA AND OPA said...

Cheri, thanks for the great explanation about Kehli. It will help clear up some of the things I have tried to explain to people. Thanks, you're a great mom.

LJB said...

My heart goes out to little Kehli and you! What a trial for someone so young! But also for you as a mother! It's so hard to watch your children going through struggles, I know (like all mothers) I wish that I could take it upon myself versus my child going through it, but (sigh...) since that's not possible.....
I will keep you and your family and especially Kehli in my prayers!

Unknown said...

good to see that big number there on the last update!!!!!! keep it up!! love ya!

christy jensen said...

You are all in our prayers. We hope you can visit again soon. Lisa loved hanging out with her newfound friend and cousin.

mom and dad said...

Sorry I haven't commented but do think about you all. Yes, Kehli's name is on the prayer roll every Wed. when we work at the temple. Blessings will surely come to you. You are in our prayers. We also put your family in the temple. Cute pictues. Thanks for sharing them with us. Love Aunt RaeDean and Uncle Floy.

Camille said...

Cheri! We will be praying for her and your family! I was just shocked! We are thinking about you. Loves.