An Anniversary of Sorts....

Sometimes I think I am losing brain cells as quickly as Kean is losing hair.

   I had three friends come over today... Danielle Bingham brought a most delish salad,

Allison Guymon brought warm cookies and Kami Reeve brought scrumptious breads and a bag of

candy for the girls.  Silly me, forgot to take any pictures of them... just the aftermath.

At least I didn't just get the dirty dishes!

It was so nice to sit and talk and laugh and talk some more.

 So today marks exactly three months from the day Kean got a fever and we started this whole insane journey.

I've had a few of you ask me to share more details... so forgive me if you've already heard this

but I want to document everything (please refer to the first sentence in this post).

On July 2nd, Kean came down with a fever. He was miserable enough

to keep me up at night but seemed to rally in the day.

He hovered between 99 and 100.6.

His worst night was Wednesday night.  I remember it was the 4th of July.

He had been edgy all day but had a horrible night.  Horrible enough that after crying for hours and hours

instead of sleeping, I finally loaded him up in the car and headed toward the emergency room.

Half way there, he fell asleep, so I turned around, headed home and put him to bed.

I took him to see the Pediatrician first thing on Thursday morning.

Our doctor was out, so her partner saw him and diagnosed a virus and told me to alternate

Tylenol with Ibuprofen.

Saturday morning he woke up with a very painful and swollen right arm.

He wouldn't use it.

So, once again, I loaded him up and headed for the E.R.

This time I made it.  They looked at it, X-rayed it and elected not to take any blood samples

since his arm was not red or hot.

The E.R. docs figured he had broken his arm but the fracture was so tiny (an occult fracture) that

it wouldn't show up on an X-ray until a week or two later when it started healing.

They gave me a referral to see a Pediatric Orthopedic Surgeon.  I was to call on Monday and if he couldn't

get us in by Tuesday afternoon, I was to call back for another referral.

The doctor I called at exactly 8:01 a.m. on Monday morning couldn't see us, you guessed it, until Tuesday

afternoon.  Kean was in obvious pain and I was stressing.

Now, here's the part, I know I have written previously about-- because it's where we know the Lord was truly watching over us-- I had forgotten to cancel Kean's speech therapist, Meagan.  She walked in the door at 9a.m., noticed Kean's splint cast and told us she knew exactly how we were feeling-- her 18 month old daughter had just broken her leg the week before.  She told us she had seen a great Pediatric Orthopedic Surgeon, so I called and Dr. Buzz Showalter could see us that day at 12:30.  Score. 

We were meant to see him-- because he is the one who picked up on the E.R. X-ray and noticed something suspicious about his bone marrow.

Unbeknownst to me at the time, Dr. Showalter had a son who had Cancer.  We were told by many later at the hospital, that the other doctor we were scheduled to see would not have picked up on the problem.

Dr. Showalter sent us down to the hospital to have blood taken.

By this point, Kean was miserable and tired.

The  lady finally got enough blood (it was an ordeal) and we went home.

About 20 minutes after we got home and I had just put Kean to bed for a late, late nap, the hospital lab called

to say his blood had clotted and we needed to come back down for another blood draw.

We went back.

By then, it was probably 3:30 to 4 p.m.

The first of many, many long days for Kean.

Honestly, I wasn't worried.  I thought he had a broken bone.

That night at dinner, the phone rang.  The caller I.D. said it was Dr. Showalter's office but when I picked up--

the phone clicked dead.  It was weird. I waited for him to call back and he didn't.  When I tried to call the office, it was well after hours. 

I still wasn't worried.

The next morning, Tuesday, July 10th, the phone rang at about 7 a.m.  It was Dr. Showalter, calling to tell

me Kean's blood results showed some abnormal cells -- most likely Leukemia or bone tumors.  He told me he had started to call me the night before, but thought it better to let me have one last night of peace.

He said he had already forwarded all the records and results to Dr. Camilo at the Mountain States Tumor Institute (MSTI) and he would be calling shortly.

You'd be proud of me.  I kept it together until I hung up the phone. 

I then completely lost it.  And I mean lost it.

Rocking in the fetal position while howling in agony on the floor.

My girls were upstairs - just getting up and they later told me they thought I was laughing hysterically.

When it didn't stop, they came down to see what was so funny.  They immediately thought someone

had died.  I did have the presence of mind to call Byron and get him on his way home and call my mother to get her on her way to the house.  I was sobbing so incoherently, my mother just headed to my house, not knowing why or what was wrong.  And so started the first stage of my greatest fear come to life.  I hate, hate, hate that over-used phrase "every parent's nightmare".  So if you can come up with a better phrase, let me know.

One final note, I remember in the days after Kean was born, he was in NICU and the hospital handed us a book-- "A Parent's Guide to Children With Down syndrome"... page after page, chapter after chapter depressingly outlined and warned that our sweet little baby had a higher percentage of having this disease and that disease, this condition and that condition.  It was overwhelming and utterly depressing.  But I clearly remember very loudly telling my family and close friends that I could handle any of those things-- EXCEPT for the 10 to 30 percent higher chance he had of getting Leukemia!  Clearly, I shouldn't have said that out loud.  Clearly the Lord is proving that I CAN handle it.

P.S.  When I was in third grade, my school teacher, Mrs. Boyd got up in church and after talking about how happy and blessed she was, she made the statement that the Lord must not think she is very strong because He hasn't given her any big trials-- and she said the Lord only gives us what we can handle.

Two weeks later she was diagnosed with Leukemia.

Her death had a profound impact on me.  You'd think I would have learned and kept my mouth shut.

You'd think I would not have said out loud... I could never handle having a child with Cancer.

You'd think.

The Lord is certainly proving me... and surprisingly, I am handling this. 

Who knew?