The Waiting Game is Over...

In the waiting room before surgery! Daddy and Pippi!

In her hospita gown!

It's been a really long 3 weeks. Really, really long. Piper had surgery 3 weeks ago. It was routine; replacing ear tubes, removing adenoids, cleaning out her sinuses, allergy testing, and blood work. We were doing blood work because she always seems to pick up every bug going around and is plagued with icky infections all the time. Well, surgery went great and we took her home. My mom happens to work for the ENT that performed her surgery, so I called later that day to check on the lab results. They weren't good. In fact, they were really abnormal. As she read me the results over the phone, my heart just dropped. I know a thing or two about blood counts, and I knew what I was hearing was bad news. My mom ended up showing the labs to another doc who then ran more labs, which were also abnormal. My mom was desperately trying to keep me calm, but I knew what it could be; leukemia. Dang. I spent the next 24 hours crying and crying. It wasn't until the next day that a pathologist was able to diagnose it as non-malignant lymphocytosis. He also said that it resembled Epstein Barr virus. I was just happy with the "non-malignant" part. We were still concerned about the other labs, but relieved. We were referred to an immunologist because her immunoglobins were really low, which meant that her immune system wasn't 100%. We scheduled an appointment for 2 weeks later and felt good about our decision. A week later, I was changing her diaper when I noticed a pretty sizeable lymph node in her left groin area. I freaked out just a bit and we took her right to the dr. Pippi's regular pediatrician wasn't in, so we saw someone else. He examined her and drew more blood to check the the Epstein Barr virus, a complete blood count, and her LDH levels. 2 days later, I noticed a handful of enlarged lymph nodes in her right groin area. I called her regular pediatrician to talk over the lab results and inform him of the new nodes. I happened to see and get a copy of the new lab results while I was in a surgery the same day, so I had them in front of me as I spoke to the Dr. He told me that all the labs looked really good; that her while count was down to 7. I interrupted him and told him that he had the wrong patient; Piper's count was almost 15. I was also bummed because the Epstein Barr virus panel had come back negative. (Not that I WANTED the virus, but it would have explained the lab work and enlarged lymph nodes). My confidence isn't real high at this point... After some choice words, I felt like I wasn't being heard, so I opted to not see the pediatrician at this point, and just keep our appt with the immunologist the following week.

This past Tuesday (the 5th), we saw the immunologist. He looked over Pip's labs for a good 40 minutes prior to meeting with us. He said that her immunoglobins were actually within the pediatric range, but he wasn't sure how properly they were functioning. Then he expressed concern over her other lab work. He asked that we give him 48 hours to consult with Primary Children's Hospital and another colleague, but said that he believed that she either had an immune deficiency disorder or a form of cancer. Back to the "C" word. I just cried and cried. We expected to hear back from him Thursday, but first thing Wednesday morning, he called and suggested that she have a bone marrow biopsy done. He collaberated with our pediatrician and we waited to get it scheduled. The pediatrician finally got ahold of the pediatric oncologist at Primarys, but that Dr. wanted all her labs repeated and a blood smear done so that he could look at it himself. Her last blood smear showed 30% atypical lymphocytes. Not real encouraging. We then remembered that Matt's cousin, Emily, is an Infectious Disease specialist at Primarys. We got ahold of her and sent her Pip's labs. She then ordered several more tests on top of the pediatricians orders. She was not only concerned about the blood work, but in the fact that Piper had a bad UTI last month. She said protocol for a child under 2 with a UTI is to run a renal ultrasound and also a VCUG (a voiding cystourethrogram). We figured if we were already going to be down there we might as well get ALL these tests done! We headed down to Primary's and did the blood work first. Pippi was a champ. Then onto the renal ultrasound. Pippi charmed the tech and was darling. The kidneys looked great. Then onto the VCUG, our last test. They had to put a catheter in and flush the bladder with contrast dye to see if the urethral sphincters were working. Immediately, we saw the contrast go right on up to the kidneys, meaning she has kidney reflux. She was a grade 3 on one side and a grade 2 on the other. She's been grabbing at her back since her UTI, so this just might explain it. Then more waiting....

We headed up to the lab to get what results were already done. Her blood counts looked pretty good, so I was happy. The majority weren't done yet, so we decided to go home and wait it out. They said the blood smear would be read in the morning by the oncologist, and that he'd talk to our pediatrician. This morning, I started calling for results. I left messages, but never heard back. I made sure the oncologist did indeed have the blood smear. He did, but hadn't read it yet. More waiting... I called the pediatrician's office again. Left another message. FINALLY, at almost 6pm, he called with the news. Same atypical lymphocytes, but definitely NOT malignant, so no bone marrow biopsy! We're thrilled. The oncologist said it looks like some crazy virus that her little body is fighting, and probably has been for quite some time. We've done several viral screening panels, to no avail. After 3 LONG weeks with lots of crying and even more praying, our little girl is going to be okay. We need to follow up with the immunologist and also make an appointment with the pediatric urologist, but knowing that she's not in immediate danger is wonderful. I've learned a lot during this process; first, always, always ask to see test results yourself. It's my right, and I want to make sure that the dr. is reading MY test results, and not someone elses. Also, second opinions are a good idea. More than anything, prayer works. This little girl has had about a million prayers sent her way, and I have felt them. I think of those out there with sick kids. We played the waiting game for only 3 weeks, and some do it for months or years. I can't even imagine. We're just happy to a have some good news for now!