August 5, 2011

Yesterday we headed to City of Hope, one of the best cancer hospitals in America.

What led us here?

A message from our pediatrician Monday afternoon that he was writing Bubs a referral to a hematologist.

Apparently after routine blood work his white blood cell count was low.

This was done after having re-tested.

The year before we had to do the test twice due to the same problem.

Apparently after further review, the last three years his count has not only been on the lower end, it has steadily decreased.

After a call to my insurance company for some doctors in our area--

I was led to three whom worked at City of Hope.

I'm not going to lie--I freaked out for about ten minutes upstairs in the privacy of my own bedroom as I googled these doctors names to read their bios and medical training and such.

Hematologist and oncologist go hand in hand.  Did you know that?

Yeah, well--me neither until the search--thus the freak out.

All photos are with my phone. . .I was torn. To document or not to document--since I was unsure of the  outcome.

Thankfully, God moved things along--he must have known my nerves would give me problems.

I called Tuesday morning, faxed his lab work papers Tuesday afternoon--

and had an appointment set for Thursday morning.

Dad, Grandma, and I arrived with our little patient where they began by letting him pick out a toy he wanted: 

Legos, of course!

He had blood drawn and they put a line in so that he wouldn't have to be picked again if the Dr. needed more blood.

He cried a couple silent tears but he didn't put up a fight as he has in the past.

Again, thank you Jesus!

The hardest part was the waiting--three hours between the initial blood draw and his appointment.

We played on our phones and the DS to pass the time.

Mom also gave me a tour of the place, but a lot has changed in the four years since she was a cancer patient there.

I remember when she was diagnosed.

I was most relieved that my dad and her two friends escorted her to all her appointments and treatments because I just knew I could never handle the ins and outs of her cancer. 

Everything about it terrified me.

Now here I was in a waiting room with my son, surrounded by beautiful bald children with ports, masks, and in wheelchairs.

What would I do if the diagnosis was such that these types of visits would be frequent?

How would we explain to our son why he needed to be pricked yet again?

Scary thoughts loomed above me like a dark cloud. 

I visited the bathroom more times than I can count.

I just sat and stared at the little community around me and prayed. 

I don't think I stopped my silent petition since I received the call Monday afternoon.

Dr. Sorrel was incredible.  

After introductions she assured us that a pathologist had looked at his slide and it was not cancer nor leukemia. 

She continued with an in depth interview covering all the years of his life and a detailed family health history.

We ruled out any familial relation since neither Ernie nor I have any history of a low white blood count.

She concluded with a physical examination.

She probably spent at least forty-five minutes with us.

The other thing I was really impressed by is that as she reviewed his file the night before she was struck with the desire to know if this decline had been a trend for longer than the three years the pediatrician noted.

She was able to get his blood work from as far back as four months and yes, in fact his numbers had always fallen within the low range. 

Jonathan has always been "sicker" than his older sister. 

I always thought it odd that the one baby I breast fed was actually the sickest of the three. . .turns out he was predetermined to fall ill on a more regular basis.

His official diagnosis?

Autoimmune Neutropenia

Basically his immune system is revved up and attacking itself.

His numbers fall within the mild range which means all of his infections, up to this point have been treated with antibiotics.  

If he moves into the (I can't think of the name) medium or severe range then the hematologist would need to work with the pediatrician to manage it.

Other than that, his yearly blood work should be sufficient to monitor.

What he has is not life threatening and it does not demand rigorous treatment right now.

We are blessed.

Truly blessed.

As Ernie said in the elevator as we were leaving.  It is bittersweet.

Would you please say a prayer for all those families whose child is being treated with a more serious diagnosis?