Bumps in the Road

We have had a few bumps in the road lately.  Nothing catastrophic, just stuff.
We have been house-hunting for about a month.  We found a house that we absolutely loved.  A house that felt perfect for us.  A house that we  really wanted.   We made an offer and the owners didn't even bother to come back with a counter-offer.  We thought we had insulted them with our offer so we made another offer.   And then we waited.  And waited.  And waited.  Okay, we only waited for two days but it felt like it was longer than that.

We finally got a response to our offer.  The owners decided to take their house off the market.  wow.

I was with Lila at Children's for her monthly IVIG treatment when I got the e-mail from our realtor to let us know that the house that been taken off the market.  I was so disappointed.  Little did I know that the biggest news of the day was yet to come.

At the beginning of the appointment I had asked the Nurse Practitioner about the possibility of Lila having anemia.  She has been super tired lately even though she sleeps between 12 to 13 hours a night. 

The NP and Lila's doctor reviewed her blood counts for the last 3 months and didn't like the way they were trending.  Nothing drastic but her white blood count has increased, her platelets have dropped and her hemoglobin has dropped.  In the last 3 months Lila's numbers had steadily moved in the wrong direction. 

They decided to do a second draw at the end of her treatment to check some things out.   Unfortunately, her counts were still moving in the wrong direction.  Lila's doctor sat down with me and told me that they were going to do a blood smear for leukemia.  That was Friday, he would  call me on Monday with the results of the smear.  Talk about a long weekend!  And oh, how a mind can wander when there are so many unanswered questions. 

 If Lila has leukemia, what type is it?  
Will she be able to receive her chemo treatments in the Springs or will we have to go to Denver?  
If we have to go to Denver how will we handle caring for Lexi?  
Will someone come and stay with Lexi so that we can be with Lila at the hospital?  
Wait- it would freak Lexi out if we were all gone.  Of course she will come with us.  
Will her therapists be willing to come to the hospital?  
Should I even be worried about Lexi's therapists if Lila has leukemia?  
Will Lila lose all of her hair?  
If so, will it grow back a different color or texture? 
 Wait- who cares about her hair.  
Is Lila going to die?

I was a mess.

 The results weren't back on Monday.   The doctor called me Tuesday around noon.  He told me that Lila does not have  leukemia at this time.  There are some abnormalities in her cells but nothing definitive.  Something is working against her immune system but they are not sure what it is.  He said it is too early to tell exactly what is going on.   With the IVIG treatments Lila is receiving monthly her blood counts should be staying steady but they aren't.  So we wait and see and do more tests.   

I have a very strong belief in God and I totally believe that He can heal Lila if she does end up having leukemia.  I also know that we don't get to choose.


Lila has good days and not-so-great days.  On Lila's good days the word leukemia hardly ever crosses my mind.  On her not-so-great days when she is tired, has dark circles under her eyes, loss of appetite and very little energy, I have to fight hard to keep the thoughts of leukemia away.  If you don't know Lila you might not even be able to tell she is having a bad day.  If you know her well, it is very obvious.

We are thankful that she usually has at least 2 weeks of good days after her IVIG treatments.  We make the most of those days.

Every day you are alive is a special occasion.  
Every minute, every breath, is a gift from God. 
 ~Mary Manin Morrissey


  1. Linda, my thoughts and prayers are with Lila, you, and your family. I can only imagine how scary this all is.

  2. Love you and miss you guys. God will take care of Lila, I know he will. I pray she will get stronger and you guys will get an answer soon as to what is bringing her down :(

  3. Such great pics! And such sweet sissy love. We are still praying and I can't wait to see you soon!!

  4. Linda, I am praying for Miss Lila!! I hope you guys get some answers sometime soon! I love all the pictures of the girls ~ they are too cute!!! Miss you ~ let's try to get together sometime soon!!!!

  5. I can not imagine how scary this must all be. I am thinking about you guys!!!!!