5 Years

Five years ago today on Friday, February 13th, 2004, I took a very sick little boy to the pediatrician to try and find answers as to why he was continuously sick- ear/sinus/upper respiratory infections, one after another for close to four months.  I never anticipated the outcome of that pediatrician visit, nor will I ever forget it.

Scott was still in California, due to fly out on February 19th.  Our moving van had already left.  The house was sold.  We were counting down the days until we were reunited again as a family.  Even as I was being brought down by complete exhaustion, I was able to perk up knowing that I would see my husband soon!  Only, I didn’t know it would be sooner than we thought.

I took Ethan to the ped. that Friday morning at 10 am.  I anticipated a sinus culture or something.  It never crossed my mind that we would be checking his blood.  CBC- take one:  LOW everything- platelets, red blood, white blood…everything. 

Dr. L wants to repeat the CBC just to make sure that there was not a lab error, and while I agreed to the second test, I knew.  I knew that my precious baby boy curled up in my arms sleeping was about to be diagnosed with something that would instantly have to make him fight like he had never fought before. 

CBC- take two:  LOW everything again.  Dr. L was very compassionate as he delivered the news and he knew that I already knew.

“You already know what we are looking at.  I believe that Ethan has leukemia.  I have called the children’s hospital and they are waiting for you on the 9th floor.”

I shook my head ok.  I held onto Ethan tight, then put his winter coat on extra snug- it was a typical cold February morning.  Ethan was so lethargic as I put him into his carseat.  I just wanted to kiss him, and I did.  I told him that it was going to be ok and that Mommy was going to be with him. 

I got into the driver’s seat, began to drive away, then I picked up the phone to call my friend, Theresa.  I was living with Theresa until Scott arrived and we were working for the same credit union.  As soon as she answered the phone, I couldn’t talk- I just began crying.  I was able to get out that Ethan possibly had leukemia and that we were on our way to the hospital.  She insisted on my going by the CU first so she could drive us and be my support. 

I still didn’t know what I was to expect when we got to the hospital.  And, for some reason, I thought that we would be going home that afternoon.  WRONG.  We arrived and they already had our room ready.  Room 901- the first room on the left as soon as you enter the HEMOC floor.

I had to call Scott and tell him what was happening.  Even though I was here, alone, with Ethan going through everything with him, I felt even worse for Scott.  He was all alone 3000 miles away and there was nothing he could do about it.  He was set to have to wait 6 more days to get to us.

Within a couple of hours, we were headed to the sedation suite where Ethan would have his very first spinal tap (lumbar puncture or LP) and bone marrow aspirate.  Theresa stayed with me the entire time and held me up as I stood there weeping as my baby was being put to sleep and poked. 

When we returned to our room, we already had blood products for transfusion- red blood and platelets.  Everything was still foggy and unreal.  I had a team of doctors and nurses that came in and explained everything.  That was a whole lotta information all at once!

Around 7 pm that Friday the 13th night, it was confirmed. 

ACUTE LYMPHOBLASTIC LEUKEMIA

I was told that Ethan did have leukemia, BUT it was the “good” kind.  In cancer world, that means that it has the best probability of staying in remission.  It would also mean that we would not need to a pursue bone marrow transplant. 

I had to learn very quickly that I could not be there for everything.  Ethan began looking at me like I was a monster for allowing those pretty ladies in scrubs to continually try and find new veins for IV’s since he kept blowing all his other ones.  Once I was able to let go and trust the nurses to do their job, I could once again be the Mommy that Ethan could trust to hold him, comfort him, stroke his arms, and rock him to sleep. 

Scott called to say that he was getting on the red-eye out of San Francisco.  His boss, and our very good friends, George and Gina Henri so graciously bought him an early ticket home.  Theresa would leave early the next morning to pick Scott and Shep up in Charlotte.  We are forever grateful for this gift.

I know that I have written about this day before.  I will probably always write about it because I do not want to forget.  I never want to forget what I saw.      

Sleeping on the couch, purple lips from lack of oxygen in his blood and distended belly {he was so little- 24 month clothes}

 

 

(A couple months into chemo- hair is gone, not all gone, but gone…big belly and swollen cheeks from the steroids)

 

 

After only a few months on treatment, Ethan’s hair started growing back, YAY.  During Ethan’s treatment that took close to three years to complete, we took advantage of good days- we went to California to visit family and friends, and we went to the Atlantic Ocean for the first time! 

 

Some may think that it is strange that I never want to forget, but I don’t because I know how much of a fighter Ethan is!  Now look at him!  I want him to know what an inspiration he is to me and to so many others.  He is truly a treasure and forever MY HERO.