Friday, February 4, 2011


We have this really great friend (and I'm not saying this because she's reading know who you are!) that called me a couple of days after I wrote the last post regarding Ava's iron levels. She was really concerned by the amount of iron the doctor prescribed as well as having some unnerving thoughts about not finding out why Ava's iron levels are so low before beginning so much iron.

After I talked to her, I started to do some research on my own. Some of the information I found was pretty scary. There was talk about conditions where the body ABSORBS the iron just fine, but for some reason the blood doesn't ASSIMILATE it very well. In these cases, people keep showing up with low iron levels and blood work exhibiting anemia. So doctors keep prescribing more and more iron trying to build up the person's levels. In the meantime, their organs are having trouble processing all of this iron and the kidneys and liver, etc. actually start to rust. "Rust" was the exact term from a website I was reading.

We immediately stopped Ava's iron and sent an e-mail to our primary care doctor asking for a referral to a hematologist. I quickly received an e-mail back stating that she would contact Ava's GI to determine if there was a possible absorption issue. In turn, I wrote and said that I didn't think absorption was the issue and that I was more concerned with assimilation at this point. We got the referral that day and she had an appointment within a week.

While having her off of the iron for the time being, we were watching her stool to see if it would firm up didn't. I was concerned that we might have caused some damage to her gut with the really high iron levels and asked the GI to look into it. She ran a fecal occult blood as well as a stool culture. Both tests were normal.

So...yesterday was Ava's hematologist appointment. We walked into the building and through the maze of hallways. As we approached the door, my heart stopped. On a very small plaque next to the door read "Pediatric Oncology". As I felt tears well up in my eyes, I willed myself not to cry, not to think about the countless children who've walked through these doors. The countless children who have lost their battles...never to walk through these doors again. I tried not to think about the parents who have waged the most horrific battle of their lives...the fight to save their children. But most importantly, I tried not to think of my sweet precious Ava as I watched her tiny little body cross the threshold and enter the office.

Inside the doors, I couldn't help catching myself trying to act "normal", like this wasn't such a terrible place to be referred to. If you didn't know better, you'd think this was a pretty cool place. There was a playroom, an aquarium, TV's, lots of really neat murals on the walls. But when you looked closer, the central hub of the office had those chairs...the ones that recline...the kind that you donate blood in...only these chairs were surrounded by IV poles and pumps. Boxes of gloves were on the shelves next to each chair, and each box of gloves read "for chemotherapy use only". At the end of the line of chairs was a gurney......I can imagine some children are pretty sick who go through here.

Our appointment was right after lunch, we were the first ones to arrive. The playroom was occupied by the doctors while they were having a meeting so they had us wait in the chemo room. Ava was sitting in the big recliner watching TV and Zoe was swiveling around on the doctor's stool. I couldn't look at Ava. She was so tiny in that huge chair. The IV pole and pump were right next to her and I could feel myself getting sick to my stomach. So many times I've wondered if she has some sort of weird cancer, and even though I don't believe she does, your mind can't help but go there at times. Being in that room, knowing what happens to children there....... 

Finally, we were called into the exam room.

As we walked in to see the doctor, we passed a young girl...maybe Zoe's age...and I couldn't help staring at her. Did she have cancer? Was she there for chemo? I tried to find some tell-tale sign that she was sick, but she passed us much too quickly and we were in the exam room before I could allow myself to think about it for too long.

The doctor came in and she was amazing. Her interest in Ava right now is not related to her eating issues. Her concern is 100% about the low iron levels. She is also concerned about Ava's current diarrhea as well as her history of bad stools for the first year of her life.

The plan is:

1) we fax all of Ava's blood counts and immunoglobulin tests to her ASAP (we did it last night). She also wanted all of her past iron levels, but in pouring over all of Ava's medical records (over 300 pages, by the way) we were unable to locate ANY previous labs related to iron.

2) the doctor is going to take a few days to evaluate all of the information, talk to the GI about her last endoscopy, and then order blood work based on her ideas as to what's going on.

3)she's also going to go through our genetic family tree that was created when we went to a geneticist and see if anything stands out at her.

The diarrhea was of particular concern to Ava's doctor. When Ava was a baby, she had TERRIBLE stools. They would come out of the back of the diaper and go up her back. But when we started her on the whole food diet at 8 months old, her stools improved. The doctor isn't so sure the two are related and it might just be a coincidence. Now that the stools are starting this pattern again, she's concerned that something else might be happening.

So, I asked, "Can there be a disease process going on here?"
"Yes, " the doctor replied.
"Do you have any thoughts as to what might be causing this?" I asked.
"Yes, I have a few theories, but I'm not ready to share them with you just yet. I would like to get all of the past labs from you, think it through for a few days, get the new lab tests and then go from there. But, yes, I do have some ideas."

I'm not sure how scared I should be at this point. Remember how I always say that living with an undiagnosed child is like constantly waiting for the other shoe to drop? Well, I think the other shoe is dangling by a thread...and that thread is about to break. The doctor knew that I would go home and start researching like a fiend if she gave me any information without proof, so she was probably smart to avoid saying anything.

Fortunately, we have a busy weekend. She wanted me to give her until Tuesday before I started to call wondering what to do. Hopefully we'll hear sooner. For now, we'll just go on as we always do. One day at a time. 

Having fun at Grandma & Grandpa's house


Playing in G & G's rock fountain...always a hit!


  1. Thinking of Ava and you and keeping the entire family in our prayers!

  2. prayers are being sent your way, keep us in the loop and praying for stronger shoe laces .... hugs!

  3. Praying you get some answers for Ava. Good idea to bring her in and not just wait to have her iron level checked again in a couple months. Keep us updated and I'll be thinking of you guys!

  4. Thank you for sharing this. We are "with you" as you live through these next days until Tuesday. Love, Sally

  5. This is always so interesting to read. I have a hematologist and it is also located in an oncology/hemo office (apparently the two goes hand in hand) and it is always hard. Thank you for sharing this with us and keep posting. My prayers are always with you and your family.