Liv and Street (Liv’s twin brother) went in for their regular 4 year well check visit on their birthday (January 19). They got the routine finger poke to check their RBC and Liv’s came back very low. The Dr. was surprised and had her re-poked to verify that it was correct. The second poke came back with the same results so they decided that they wanted to have her go next door to the hospital to have her complete blood count run. He suspected it would be iron deficiency anemia, based on what was common for her age, and that we would just need some iron supplements for the next few months. NBD.
I took her into the hospital the next morning and they did a blood draw and we went home. A few hours later we got a call back letting us know that her CBC came back concerning and that they had been on the phone with the Hematologists and Oncologists at Primary Children’s. She had very low RBC’s and WBC’s and a high SED rate, but they didn’t see any cancer cells in the initial testing. Phew! Now to get to the bottom of her odd numbers… They suspected that it was most likely a viral infection or an autoimmune disease. I told her pediatrician that I have Celiac Disease and Lupus and that Liv had also unknowingly been around someone with Mono a few months earlier and asked if they would test for those three things. One week later we got some results. She was positive for Celiac Disease, negative for Lupus, and her blood showed that she had had Mono but that it was no longer active. The doctors were hopeful that the Mono was the cause of the low WBC’s. If it was, then we would see the WBC’s start to climb after a little bit of time.
So, the plan of action was to get her on the gluten free diet and retest her blood in two weeks. They were hoping that it was just a virus and the WBC’s would go up and the RBC’s would increase because of the gluten free diet.
Luckily, I was diagnosed with Celiac Disease 12 years ago, so I am very familiar with the gluten free diet. I just made it a really big deal that Liv was so lucky that she got to eat like Mommy 🙂 She did AMAZING. Never complained about her diet once and was so excited to tell everyone that she eats “gloon free” like Mommy. She made sure before anything went into her mouth to ask me first, “Mom, are you sure this is ‘gloon free’?” She also was a champ about getting her blood draws (she got a total of 5 in 6 weeks). She LOVED that she got to go all by herself with Mom on a date. Haha. She always picked to get Frosty’s afterward and she always wanted to get everyone in our family one to take home to them.
Two weeks later we went in for her labs, and a few hours later we got a call from our pediatrician saying they weren’t any better. He had called up to the Hematologist/Oncologist at Primary Children’s and she wanted Liv to come in for a bone marrow aspiration. We scheduled it for three days later. The next day she called back and said she needed to move the aspiration to another day because she had a meeting at the time we originally scheduled. I told her I was leaving on a cruise and asked if I needed to cancel my trip so that we could do the aspiration right away. She told me there was definitely no need to cancel, that this wasn’t an urgent concern because she had already looked at the blood under the microscope and it didn’t show signs of cancer. She said she just wanted to have her in within the next two weeks and to go and not worry about it.
**I went on a cruise to the Eastern Caribbean with my mom. We had so much fun, and I got a lot of rest and relaxation***
I got home from my cruise and took Liv in for labs the very next day (Sunday). We wanted to see if they had miraculously gone back up and maybe she wouldn’t need a bone marrow. My pediatrician saw me the next day and told me that her labs were just as bad, so we were going to keep the appointment for the aspiration.