Tuesday, July 6, 2010

My Brain is FULL (but at least there is chocolate cake)

Ok, remember a few posts back when I went on about how I like to know things? Well, it can stop now.
I have tiny bits and pieces of information bumper car-ing their way around in my head and the impacts are starting to hurt.

The hematologist called back last week and said they have given Tomas the working diagnosis of Autoimmune Cytopenia. His body is attacking (at various times and in various combos) all 3 cell lines, platelets, RBCs, and most especially, WBCs in the form of neutrophils. No one knows why he is doing it - that part still needs to be figured out. But here's what we know:
He has CD56 on his granulocytes and monocytes
He has decreased IgM antibodies.
He has slightly decreased B Lymphocytes.
He has a mother who had to look all that up before she knew what the heck anyone was talking about.

Before Hem/Onc begins IvIG therapy they wanted immunology to look him over and see if there was anything else to test for or look at. I just got a call from them that the 1st available is on Sept. 27th. Pretty funny. Tomas sees hem/onc tomorrow so I guess they will go ahead and start without waiting on Immunology.

Tomas still has the cellulitis around his G tube, and after a cough filled weekend with a trip to pulmonology this morning he also has bronchitis. Just for fun (not really) I took him to GI this afternoon to go over his feeding plan, find a formula to use when he is in the hospital, and have the Dr check his stoma.

While we were there the Dr asked me some questions and it turns out that night sweats and episodes of tachy/brady cardia are NOT normal! Who knew? Ok, I knew but I didn't want to admit it. It is a neuro-motor issue connected to the GI system and I should bring it up with Tomas' neurologist. Only prob? He doesn't have one. Thankfully, the GI doc said it wasn't a HUGE deal and did not need to be addressed right now. Great - back burner for that one.

Final stop for the day was the pharmacy. With new antibiotics and a new pulmonary drug that needs to be drawn out through a needle and added to his current regimen of neb treatments, which have been greatly increased due to the aforementioned bronchitis. And this might be a good time to throw in that his nursing hours ran out last month and I am waiting for the medicaid waiver to become effective before we get our nurse back.

Now everyone knows how funny I think my husband is (it is his saving grace), but  I am beginning to think that God shares his trait. Just this weekend we were talking about (what else?) Tomas and he said in an exasperated voice:
"What are we going to do about him?"
Me (I think this was brilliant on my part) "Love him."
"Well, I do, but God keeps trying to kill him."
Me (finding the humor in that) "Ok then, just do what I do and pray to find joy in everyday and all the little things."
He considered it for a moment but then went back to his pessimistic ways. BUT God was listening - stupid omniscient, omnipresent ears!

So my theory is that God is hiding joy in all the medical terms and jargon and doctor visits and therapy sessions and medications, and that I have now been challenged to find the joy in the mundane, and sometimes downright difficult. But that is ok, because I am winning.

Turns out joy was hiding in the chocolate cake I made on Sunday afternoon. I found it yesterday when I picked my girls up from camp and they came home and had a big slice of cake and a big glass of milk and talked non-stop about their day and their new friends.

Today it was an easy one. Joy was shining from a woman with (I think) CP. She and I shared an elevator ride up to the clinic and the spirit in her recognized the spirit in Tomas and the two of them electrified the entire cart load of people.
And always, always, there is joy in that smile. The one that draws people from across the room. The one that is more contagious than any disease in the world.  That smile is the reason I know I can't lose, and I am the better person for having seen it.


  1. That infectious and contagious smile radiates such pure and absolute joy and I know,you know,that is truly all you need.

    Why some of our children have a path riddled with more than others,I may never know.Ever.But what I know for certain is that the day Zoey was born,so were the the rest of us.Rebirth of sorts.An opportunity to step outside our individual boxes and look to a small child and to God,for all we need.

    Now,on a semi lighter note ... one time,actually before leukemia,I was rattling off to someone,the litany of all Zoey's "stuff" and she looked at me and looked at Zoey and when I finished,without missing a beat, she said"Don't worry momma,she is just getting all that garbage out of the way early.The rest will be smooth sailing."With the exception of leukemia,like how I write that so casually,I like to think that to be true ... I will for sweet Tomas as well.It's the only way I make it through the day.

    Love and prayers as always.

  2. I can't help but smile when I see his smile. Such a precious angel of God.

  3. We were just talking about living each day to the fullest, and not worrying about tomorrow yet, because you never know what it will bring. So funny that you posted this at the same time!

  4. You got it!!! JOY! It's there for the taking!

    And thanks for the tip on "our" Hubby!! See, I never tried to see the things that he says with humor! It's usually.. exasperation! Now with you method in tack, my hubby may have some saving grace of his own!

    And hug Tomas for me, because he is a bundle of joy!!

  5. Wow that is a lot going on. I am so glad you are making and eating chocolate cake. You have an amazing attitude. I think I need to take some of your's and adjust mine. Lately I have been overwhelmed by things(not relating to my son). I have to find the joy in it or the lesson being sent to me. Hugs. Love his smile.