Yesterday Roo and I were at the hospital for her blood draw. When she was born with TMD (Transient Myeloproliferative Disorder), she had daily blood draws to check her white blood cell counts and other factors. At one point during our 2 month stay in the NICU, the Hematologist (we had 3 who rotated days) in the department that day told me I would need to bring Roo in up to 3 times a week for additional blood draws after she was released. Three times a week! Then over time, and as she continued to make progress and her overall health got better, but before we left the NICU, the doctors told me she should come every other month for a blood draw. After feeling relieved at the change in that schedule, I got worried. How could we possibly have gone so quickly from needing to be tested multiple times a week to every other month? Were they sure they had the right patient? Even every other month was no breeze, though, especially given an infant with a G-tube and multiple, timed meds, plus a 1st grader to consider as well. But we did go back, every other month, for at least a year (my mind is foggier now), and thankfully, every time her counts were normal. Then after a year, we were able to go to every 3 months, then eventually every 6 months and finally, annually. At age six, she was technically released from being a patient of the Hematology/Oncology Clinic because her counts had been consistently in the normal range for years, even with many pouts of petechiae (tiny dots on her face and chest from broken blood vessels, usually in her case caused by crying or coughing), and a post fever rash that her Pediatrician thought might indicate that something was going haywire in her blood.
It's always a great thing to be released from a specialty clinic, even if the thought of that is daunting. When she was 2, she was released from Cardiology. She was not born with a heart defect but she had complications from the TMD and a small hole. After doing follow up testing at age two and seeing that the small hole had formed a membrane and there were no other cardiac concerns, she was released. I shook the Cardiologist's hand, thanked him for his care and support for her and wished him a nice life. I did the same with the Hematologist when Roo turned 6, but here we are again going annually.
Add to the plot is the need for thyroid screening twice a year. She takes Synthroid daily and has since she was a newborn. I have an arrangement with her Endocrinologist to tack on a CBC with diff every time he writes an order for her thyroid labs, just to be on the safe side. Last year her WBC (white blood cell count) and MCV (mean corpuscular volume or volume of red blood cells) were off. Her WBC was lower than normal and her MCV was higher than normal. Because of this I contacted Hem/Onc and they told me to bring her in. She was fine otherwise but those lab results earned us another visit. After her check-up and a discussion of the lab results, it was recommended that I bring her back again a year later. That brings us to this week. Thankfully this time around her WBC is in the normal range and her MCV, although slightly elevated, is not concerning because it's coming down and is close to the normal range. It was again recommended that I bring her back in a year from now. So she went from a "graduate" of the clinic to back on the patient rolls again, but I'm not complaining. I'll take her to a Hem/Onc clinic every year I'm on this earth if that helps to keep her healthy.
But, as the title indicates, there is a toll on me every time I walk through the door of the clinic. They are truly wonderful people there and I don't mind the inevitable long wait time given the severity of what most of their other patients are facing. What I mind is my own internal workings, my inner demons that give me a bout of PTSD for want of a better description every time we cross that threshold. The day before our appointment each and every time I have a case of the "what ifs," what if she has developed full blown leukemia, what will that do to her, what further complications will that cause, and will she survive? It's not that I don't have faith and it's not that I am the type of person that always fears the worst. It's just that the memories made during her first few months out of my womb, and the overwhelming stress on my psyche, are seared into my brain.
I am so very thankful for how far she has come, and I can't imagine what families go through day in day out for years with their medically fragile children. But, all my fears, sorrow and struggles to cope come back to me in a flash when we walk into that clinic.
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