Hadley has always been a high-spirited, loving little girl. She loves playing with other kids and adores her big brother, Jonah.
In May of this year (2015), we noticed Hadley was slowing down some due to a few minor symptoms; low grade fever that came and went, a cough that lingered, headaches that came out of nowhere and random leg pain. Then, she started bruising without explanation.
I was feeling uneasy, as Jonathan (my husband) and I were about to go out of town for the weekend. So, I took her back the the doctor’s office once again (the 4th time in about 4 weeks). Each previous time they said it was probably viral, but this time they pricked her finger and the results were staggering.
They sent us directly to East Tennessee Children’s Hospital, here in Knoxville, to confirm the diagnosis, B-ALL (B cell, Acute Lymphoblastic Leukemia) and admit her to the oncology/hematology floor. We pretty much lived at the hospital for the next 20 days/nights. Within the first 48 hours she had surgery to put in her chest port, began chemotherapy, got her first spinal tap with bone marrow extraction, had an echo cardiogram and received blood transfusions and platelets.
We were so overwhlemed (and scared!) by all the information, education, counseling and prognosis (90-95% success rate after a 2 year treatment plan and a lot of isolation). We were signing waivers and consent forms for toxic drugs to be put into our daughter’s body. Any parent knows, that goes against every single instinct you have. Looking back, I think we must have been in shock and just going through the motions.
The first 4 weeks of treatment included steroids and daily chemotherapy as well as more blood transfusions and platelets. Her numbers were so low that she had to wear a mask and be isolated as her immune system had no defenses. Somewhere around Day 5 they started talking about sending us home and I think my head started spinning. I felt so out of control and ill-equipped to deal with managing this at home. But, then she spiked a fever and they had to keep her long enough to determine that she did not have any type of infection. Because of the steroids, she was very emotional and hungry. She gained approximately 12 pounds in 2 weeks and had a lot of leg pain and difficulty getting around. Once we brought her home on Day 21, we decided to get a puppy so she would have “someone” to play with while her friends were at the pool, at preschool, having playdates, etc.
The next 4 weeks she did not have to continue the steroids but the chemo effected her appetite in the opposite way, so she lost about half of the weight she had gained. This is also when we saw the majority of the hair loss she has suffered so far. Her hair was extremely thick and beautiful, so even after losing quite a bit, she still has enough coverage that it’s not totally obvious (yet).
During these first 2 phases of treatment, she has had weekly clinic appointments where they re-access her port so they can administer the larger doses of chemo as well as a spinal tap (she is asleep for the spinal -they are collecting spinal fluid to test for any cancerous cells in the spinal fluid and injecting chemo drugs into it as a prevenetive measure). Clinic visits always bring a lot of stress and anxiety. It is a scary process for her to get re-accessed because that means a new needle puncture everytime (but, it’s necessary because they have to get the meds directly to the larger artery).
We just began phase 3. Her clinic visits are every 10 days now. She should not have to get another spinal tap during the next 56 days. And, we are currently only giving meds at home on the weekends. Phew. It almost feels like a vacation from leukemia.
Her spirits are high right now and her attitude remains positive. She is feeling very playful and even pretty feisty. We still have a long road ahead of us, and don’t know what that will bring, but we are grateful for this time when she is feeling more like herself. If she is able to tolerate this current round of treatment well, it is likely that she will be able to start pre-school this fall on a limited (as her health allows) basis. Right now, she is happy to be able to go to church (wearing a mask) and occassionally have lunch with friends.
We also want to share the good news that she is officially in REMISSION. Her blood counts are high and there are ZERO traces of cancerous cells in her body.
People like you are making a difference in the lives of others (like our daughter) and we are so humbled by your generosity. We truly believe that something really big is in her future and that God wouldn’t put her through this for nothing. Thanks for being a part of our journey.
From the bottom of our hearts, THANK YOU!!!! Beki (Edgemon) Brooks, Jonathan Brooks, Jonah(10) & Hadley (4)