My daughter, Haylee Kate, was diagnosed with APML Leukemia, which is a rare form, on November 21, 2011 at 8 years old. I thought this would be a good way for me to get my thoughts and feelings out and to let others know about her ups and downs throughout her treatment.

May 1, 2013

Trip to Hilton Head and...FINALLY a diagnosis!!

Week of April 8

Haylee had her first sign of 'sickness' since July 2012.  She began running a fever around 101 that Monday night not to mention she has had a rash for the past month that no one seems to know the cause of.  My mom and I drove her down to Egleston's ED to have counts checked and draw blood cultures.  They went ahead and gave her an antibiotic via IV and sent her home since counts were alright.  She off and on ran a fever during the week but I was instructed I could give her Tylenol as long as I checked the temp first since her cultures came back negative. 

Week of April 15-19

We spent the week in Hilton Head but not without checking out Hilton Head's ED first.  The night of our arrival, we had to take Haylee to get counts checked for a fever...again.  She ended up learning to deal with blood draws in the bend of her arm (FINALLY!!).  She realizes now that it doesn't hurt...thank goodness!  After that visit, we had an absolute BLAST!!  We stayed at a house in Sea Pines through the Hilton Head Hero Foundation....a wonderful organization.  They help families who have been dealing with cancer have a great vacation.  The house was beautiful!!  We went on a dolphin cruise, horseback riding, rode bikes all over Sea Pines and Harbour Town, played putt putt (many times), the kids climbed trees in Harbour Town, went to a kids museum, saw the movie "The Croods" - hilarious by the way - saw outdoor music acts, and so much more!  We were up mid-morning, out all day, and stayed up playing games with the kids til late night.   It was so relaxing and beautiful there.  We really enjoyed ourselves.  Haylee seemed to hold the fever off after Tuesday so even she did great!

Riding bikes - Adam was having to pull Mason and he was trying to get going!

Playing putt putt

Getting ready for the dolphin cruise

Watching the dolphins

Climbing trees

Up to the top

Playing at the beach

Coligny Park - in the fountains

Pony rides for Mason!

Big horse for Haylee

Petting the sweet deer

April 23-26

Haylee had a regular clinic appointment on 4/23 but little did we know that her counts were low and she was running a fever so we were admitted to the hospital.  Luckily, my mom came with and stayed with Haylee Tuesday night so that I could go home and grab some clothes for us.  They did blood cultures everyday for 3 days to make sure there was no bacterial infections (all cultures were negative), drew blood for a viral panel (7 vials!), checked for viral liver infections, and did an ultrasound on her liver, spleen, and gallbladder.  She had no more fever after Tuesday through Friday.  We kept busy as much as we could - played poker with the Wells Fargo crew, hung out at Seacrest Studios, played BINGO, had a visit from Mason and Daddy as well as Haylee's teacher, Mrs. Outlaw, and her husband and hung out with some Falcons players - Sam Baker #72, Joe Hawley #61, Garrett Reynolds #75, Mike Johnson #79.  We were discharged Friday morning with no news other than a follow up appointment with Dr. Abdella on Tuesday, April 30. 

Playing poker with the Wild West Wells Fargo Crew

She's in the hospital and still has a sense of humor!

Mason and Daddy came to visit!  Mason loved Haylee's RC helicopter!

Going to pick out gifts for Mom and Dad with Sam Baker from the Atlanta Falcons
Haylee Kate and Sam Baker #72

April 27-29

We had a pretty good weekend other than Haylee ran a fever Saturday and Monday nights.  I called the after hours clinic on Saturday and they allowed me to give her Tylenol once but to go somewhere for counts if she ran a fever again.  She did run a fever Monday night but since we were going to clinic Tuesday morning, I just gave her Tylenol again and sent her to bed. 

April 30

I was so full of anxiety today that I was almost sick.  Haylee went in for blood draw and I was terrified.  Dr. Cooper saw me in the hall and tried talking me down from my anxiety reassuring me she wasn't relapsing.  Dr. Abdella came in and let us know that they know what her official diagnosis was....Cytomeglovirus.  So, what exactly is that you ask?  From

"Infection with cytomegalovirus (CMV), a member of the herpesvirus family, is very common. Between 50% and 80% of people in the United States have had a CMV infection by the time they are 40 years old, according to the Centers for Disease Control and Prevention (CDC).
Kids typically become infected in early childhood, especially those in childcare and preschool settings. CMV infections are rarely serious in otherwise healthy kids and adults; they usually cause only mild symptoms, if any. When symptoms do appear, they're similar to those seen in mononucleosis ("mono") and only last a few weeks.
CMV is mainly a problem for certain high-risk groups, including:
  • unborn babies whose mothers become infected with CMV during the pregnancy
  • children or adults whose immune systems have been weakened by disease or drug treatment, such as organ transplant recipients or people infected with HIV
Once a person has had a CMV infection, the virus usually lies dormant (or inactive) in the body, but it can be reactivated. The virus is more likely to be reactivated — and cause serious illness — in people who have weakened immune systems due to illness."

She will be treated with an anti-viral medication for almost 2 months to help 'deactivate' the virus.  She has been mostly asymptomatic - only fever and rash.  They feel she has a mild case of the virus and that hopefully no IV meds will be necessary.  We go back in 2 weeks to check the status of her counts (which were really low on Tuesday and the anti-viral can drop counts as well) and to see if the number of copies of the virus has gone down.  If the virus hasn't gone down significantly enough for them, they will then give her antibodies to help her fight the virus.  Her current immunoglobulin levels (antibodies) are a little low but they feel she has enough to fight it.  They will test them again in 2 weeks. 

So there you have it!   Cytomeglovirus is the culprit.  Nothing serious, but still something we need to watch out for.  Keep her in your thoughts and prayers and together we can will this virus back to inactive!!!

January 24, 2013

AHHH!! We've got Bieber Fever!!!!

Last week, Kristin from the AFLAC Cancer Center called us to let us know that someone donated 2 tickets to the Justin Bieber concert to a patient who was well enough to enjoy the concert.  Everyone there knows Haylee to be a HUGE Bieber fan so she called us to offer us the opportunity.  I, of course, said YES with no hesitation.  I contacted the owner of the tickets, Angela, and we met up  last weekend for lunch and to meet them for the tickets.  They were sooo nice!!!  Angela and her daughter, Annabelle, were going to the concert as well - just a few rows down from us. 
Last night was the concert and we had an absolute BLAST!!!  We loved the show!  Cody Simpson opened for Carly Rae Jepsen and she opened for Justin.  Our seats were AMAZING!!  Haylee told me that it was the greatest night of her life :)  We some fun and needed mother/daughter time.  I loved being able to share that with her.  And now she can say her very first concert was Justin Bieber of all people!!  A special thanks to Angela, Annabelle and their family for making this possible for us.  They are angels!!!  We are so thankful for them - we can't say thank you enough!!