Nov 18, 2016 Latest post:
Nov 16, 2017
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Yesterday, our 5 year old daughter, Lyla, was diagnosed with Leukemia. There are no words. The past 24 hours have been a whirlwind of life changing news and raw emotions. We are still processing everything that is happening to our baby but are confident she is in good hands and we will stand united as we battle this terrible disease together. In the meantime, this is Lyla's story.
A few weeks ago Lyla could not seem to shake a low grade fever so after a few days Tiffany took her to the walk-in clinic at our pediatrician's office. They told her it was a virus and to give her some Tylenol every 6 hours until it went away. She shook the fever for a little while but then it reappeared. It was mostly low-grade but never really slowed her down (not much does). Fast forward about a week and Lyla was doing fine but started complaining that her leg and her stomach were hurting. It wasn't constant pain, only every so often and very brief. After her fever reappeared sporadically last weekend, Tiffany took her back to the doctor's office on Wednesday morning. They immediately sent her to Children's Mercy for blood tests and mentioned that this sounded a lot like it could be Leukemia.
A few hours later, our worst fears were confirmed and Lyla did in fact have Leukemia. She checked into Children's Mercy downtown and has been here ever since. Last night we met with Lyla's team of doctors. Her oncologist, Dr. August...Fellow Dr. McCarthy...Resident Dr. Lambrecht and a medical student. They informed us that Lyla has Pre-B ALL (Acute lymphoblastic leukemia). ALL is a fast-growing cancer of a type of white blood cells called lymphocytes that crowds out bone marrow, preventing it from making the normal red blood cells, white blood cells, and platelets that your body needs. This is the most common form in children and one of the most treatable.
After our meeting, they immediately ordered a blood transfusion and platelet transfusion as both counts were not where they should be. This was successful and her white blood count has gone down from 57 to 26 overnight and her platelet count is in a better range as well. Today, Thurs 11/17, they are going to sedate Lyla (with strawberry flavored gas) and do a spinal tap to see if the leukemia is in her spinal column or brain stem. At this time, they will also give her the first dose of chemo. They will also use this opportunity to remove her temporary I.V. and install a "port" in her chest where they will give her treatments from now on. She will wake up sore, but for the most part, will not experience any pain during the procedure.
Of course we are just getting into this craziness but long-term, it looks like Lyla will be on a 2 year treatment plan. The first 7 months are pretty intense and consist of a cocktail of drugs over a four phase approach. Most will be outpatient, some will require 3-day stints in the hospital. After 7 months she will move to the maintenance phase that will last for approximately a year and half. It sounds like Lyla will be pretty confined for the first 4 weeks to try and reduce exposure to outside germs. This means she is done with Pre-K for a while, possibly the entire rest of the year. If all goes well today, we are hoping she will be home for Thanksgiving.
As you can imagine, Lyla doesn't really understand what's going on yet. Maybe at some point, we will explain more to her but for now, we are trying to keep it simple. Luke knows his sister is sick, and we explained she has cancer in her blood, but doesn't understand much beyond that right now. He just thinks it's cool the hospital has popsicles and a Wii system in Lyla's room.
This whole thing is pretty overwhelming so we are doing our best to take it hour by hour, day by day. We feel like Lyla is getting the best care possible and we are thankful that we are surrounded by so many caring friends and family to help us through this. Thank you for support and please know we are always accepting thoughts and prayers.
Claude & Tiffany
(As a side note, the doctors have recommended no visitors. This is really to reduce her exposure to potential germs during a time when her immune system is at its most susceptible. We appreciate you understanding. )