When we rang in the new year in 2012, we didn't know anything about leukemia -- only that it was a devastating disease that we subconsciously wished we would never have a part of. Jade's initial diagnosis of acute myelogenous leukemia in January 2012 forced us to know more than we would have ever imagined about it-- the different types and subtypes, modern treatment plans, drug availability and side effects, prognosis factors, etc... and yet, we still don't know much. With the diagnosis of relapsed leukemia in March 2014, we are reminded that there is much that we don't yet understand, that the doctors don't understand about this cancer...
Nonetheless, here is a bit of information that we've gleaned from various sources on the web, conversations with our doctors, and our own experiences to help you understand.
The Basics:
"Acute myelogenous leukemia (AML) is a fast-growing cancer of the blood and bone marrow. In AML, the bone marrow makes many unformed cells called blasts. Blasts normally develop into white blood cells that fight infection. However, the blasts are abnormal in AML. They do not develop and cannot fight infections. The bone marrow may also make abnormal red blood cells and platelets. The number of abnormal cells (or leukemia cells) grows quickly. They crowd out the normal red blood cells, white blood cells and platelets the body needs." www.marrow.org
"Approximately 500 children are diagnosed with acute myeloid leukemia in the United States each year." www.stjude.org. Within AML, there are different subtypes. Jade's subtype is M7, also known as acute megakaryoblastic leukemia. This particular subtype affects cells that normally make platelets when they mature.
Tell-Tale Signs:
"The symptoms of AML are caused by low numbers of healthy blood cells and high numbers of leukemia cells. A person with AML may feel generally unwell and run-down. He or she may also have other, less common symptoms.
During the months leading up to the diagnosis of relapsed leukemia, Jade came down with episodes of fever, joint pain, exhaustion, and loss of appetite that would last for one to two weeks. However, she always seemed to recover from these episodes. Five trips to CNMC over five months ended with "clean" blood tests, no solid explanation of the source, and continued helplessness and frustration on our part. It was only after rheumatologists ruled out arthritis and recommended a bone scan that a bone marrow biopsy (a less invasive procedure, if you ask me) was scheduled for March 19, 2014 to definitively rule out any oncological cause. Unfortunately, that just was not the case...
Before Jade was initially diagnosed in 2012, she was often fighting or recovering from an infection (ear, skin, etc.) This always struck me as odd because she was nursed for the first year -- just like her big brother -- but she was so much more "sickly" than he ever was. Maybe it was placing her in daycare much earlier than him, I thought. Don't worry; this is normal kid stuff, I heard.
The months leading up to Jade's initial diagnosis, she was also in and out of the urgent care clinic and emergency room because of limping and joint pain that resulted in her ceasing to walk on her left leg altogether at one point, elbow joint pain that resulted in her not bending or using her arm and made getting dressed or picking her up a painful ordeal, and swelling on her temple. But x-rays, cat scans, and ultrasounds revealed nothing of concern. Inflamed hip joints were the presumed aftermath of an infection. And while the x-rays were clear, nursemaid's elbow, a partial dislocation of the elbow that typically occurs in children whose arm has been tugged suddenly and forcefully by an adult, was diagnosed at the urgent care. (And I couldn't imagine any of the adults in Jade's life pulling her hard enough to dislocate her elbow!) Cellulitis was diagnosed during a couple of the visits, but it felt like a "fall-back" plan to me, and not really what was ailing our baby so much that she wouldn't walk or use her arms at times.
Jade loved to be held... and I love to hold her, so I rarely questioned why. Was she spoiled? A certified momma's girl (or daddy's girl, depending on the day)? Maybe so, but even in our absence, Jade would insist on being held, whether awake or asleep sweating buckets -- by grandpa, grandma, Ms. Sata (her childcare provider), Mr. Reeves (Ms. Sata's brother), etc. Looking back, it was less about her being spoiled than her quite simply not feeling well or having the energy to carry on otherwise.
Initial Diagnosis and First (49 Day) Inpatient Stay
Jade was admitted to Children's National Medical Center on Thursday, January 5, 2012 for an eye infection. It looked pretty scary, but our pediatrician and the opthamologist suspected it was preseptal cellulitis, completely treatable and relatively harmless if the infection stayed in front of the eye. Because Jade was not keeping down the oral antibiotics prescribed and not responding quickly to antibiotic shots, our pediatrician and opthamologist recommended admission to Children's for IV antibiotics. With our overnight bag in tow, we scooped up Little Jay from school and headed to Children's, anticipating being there just overnight while the IV antibiotics did their work. When we woke up the next morning, however, the swelling and fever persisted; her eye even looked like it had worsened. So, we prepared ourselves to stay a little while longer.
The swelling of her left eye began to go down after a few days, only to have the right eye swell up. Opthamologists and infectious disease doctors were consulting on her case; her eyes were healthy and the traveling swelling really made this look less like an infection. We would complete the ten-day antibiotic course just in case. Amidst all of this, those fevers that constantly plagued Jade continued (reaching nearly 105 despite being on antibiotics) and that pesky limping problem resurfaced. While seemingly totally unrelated to the eye, Dad figured why not bring it up to the children's experts here and get to the bottom of it once and for all? (I'm glad he did.) The doctors listened to us and brought in several teams -- Infectious Disease; Rheumatology; and Hematology/Oncology -- to figure out what was going on with our baby girl. The "figuring out" part meant tons of questions... and tests over five very long and stress-filled days. Blood tests (can't even remember how many times Jade was poked to have blood drawn or her IV reset), bone scans, cat scans, x-rays, urine samples.
Initial blood tests showed Jade was slightly anemic; all of her other levels and counts were fine. But one by one, my "hoped for" outcomes were ruled out. Infectious Disease was testing for a very rare condition called TRAPS, among whose symptoms were recurrent fevers and eye swelling, but they weren't optimistic about this as a diagnosis. Rheumatology tests came back negative. And so, that left us with Hematology/Oncology who were testing for three possible conditions (neuroblastoma, granuloma, and leukemia) that would explain the inflammation and areas of rapidly growing cells found in Jade's bone scan, the thinness and brittleness of her bones, and legions found on her skull, shoulders, hips. At this point, we were grasping at straws... could falling out of the bed have caused this?
I'd like to say that I experienced a range of emotions throughout, but the truth is that powerlessness, anxiety, and disbelief were the only feelings I had enough energy to juggle. The combination of not knowing what was going on and watching our otherwise sassy and demanding little girl lie in a hospital bed for most of the day hooked up to IV fluids stripped me of everything inside. And while I was just able to maintain my composure during my talks with the doctors to hear and process everything they were saying, I was otherwise a sobbing mess or about to be one... I was constantly on the brink of a tearful outburst, whether on the phone with my sister, on the internet learning more about childhood leukemia, or helping Little Jay complete his homework in Jade's hospital room before he and Dad went home for the evening. We just wanted to take our baby home.
When neuroblastoma and granuloma were ruled out, our first bone marrow biopsy was scheduled for Friday, January 13, 2012. We prayed for a leukemia-free diagnosis, but if it were leukemia... please let it be acute lymphoblastic leukemia (ALL), which has a 90% cure rate in children. We learned later that evening that not only did Jade have leukemia, but she had acute myeloid leukemia, which has a 60% cure rate in children. www.lls.org. It would be almost another week before the subtype -- M7 -- was confirmed. The absence of leukemic cells in her blood and the particular subtype, which in children is most often found in kids with down syndrome, delayed the final diagnosis and prompted a second opinion from St. Jude's.
But once the doctors knew for sure, Jade was scheduled for surgery for a central line placement (when a catheter is inserted into a large vein that leads to the heart) that would be used to administer her chemotherapy treatments and a lumbar puncture (spinal tap)/introthecal chemotherapy the next morning. And so we began an intensive chemotherapy treatment plan that will see Jade hospitalized for the majority of the time until the fall. We remained in the hospital for another 33 days (a total of 49 from when we entered for the eye infection right after the New Year), during which time, she:
Nonetheless, here is a bit of information that we've gleaned from various sources on the web, conversations with our doctors, and our own experiences to help you understand.
The Basics:
"Acute myelogenous leukemia (AML) is a fast-growing cancer of the blood and bone marrow. In AML, the bone marrow makes many unformed cells called blasts. Blasts normally develop into white blood cells that fight infection. However, the blasts are abnormal in AML. They do not develop and cannot fight infections. The bone marrow may also make abnormal red blood cells and platelets. The number of abnormal cells (or leukemia cells) grows quickly. They crowd out the normal red blood cells, white blood cells and platelets the body needs." www.marrow.org
"Approximately 500 children are diagnosed with acute myeloid leukemia in the United States each year." www.stjude.org. Within AML, there are different subtypes. Jade's subtype is M7, also known as acute megakaryoblastic leukemia. This particular subtype affects cells that normally make platelets when they mature.
Tell-Tale Signs:
"The symptoms of AML are caused by low numbers of healthy blood cells and high numbers of leukemia cells. A person with AML may feel generally unwell and run-down. He or she may also have other, less common symptoms.
- White blood cells fight infection. Low numbers can lead to fever and frequent infections.
- Red blood cells carry oxygen throughout the body. Low numbers can lead to anemia — feeling tired or weak, being short of breath and looking pale.
- Platelets control bleeding. Low numbers can lead to easy bleeding or bruising and tiny red spots under the skin (petechiae).
- High numbers of leukemia cells may cause pain in the bones or joints." www.marrow.org
Before Jade was initially diagnosed in 2012, she was often fighting or recovering from an infection (ear, skin, etc.) This always struck me as odd because she was nursed for the first year -- just like her big brother -- but she was so much more "sickly" than he ever was. Maybe it was placing her in daycare much earlier than him, I thought. Don't worry; this is normal kid stuff, I heard.
The months leading up to Jade's initial diagnosis, she was also in and out of the urgent care clinic and emergency room because of limping and joint pain that resulted in her ceasing to walk on her left leg altogether at one point, elbow joint pain that resulted in her not bending or using her arm and made getting dressed or picking her up a painful ordeal, and swelling on her temple. But x-rays, cat scans, and ultrasounds revealed nothing of concern. Inflamed hip joints were the presumed aftermath of an infection. And while the x-rays were clear, nursemaid's elbow, a partial dislocation of the elbow that typically occurs in children whose arm has been tugged suddenly and forcefully by an adult, was diagnosed at the urgent care. (And I couldn't imagine any of the adults in Jade's life pulling her hard enough to dislocate her elbow!) Cellulitis was diagnosed during a couple of the visits, but it felt like a "fall-back" plan to me, and not really what was ailing our baby so much that she wouldn't walk or use her arms at times.
Jade loved to be held... and I love to hold her, so I rarely questioned why. Was she spoiled? A certified momma's girl (or daddy's girl, depending on the day)? Maybe so, but even in our absence, Jade would insist on being held, whether awake or asleep sweating buckets -- by grandpa, grandma, Ms. Sata (her childcare provider), Mr. Reeves (Ms. Sata's brother), etc. Looking back, it was less about her being spoiled than her quite simply not feeling well or having the energy to carry on otherwise.
Initial Diagnosis and First (49 Day) Inpatient Stay
Initial blood tests showed Jade was slightly anemic; all of her other levels and counts were fine. But one by one, my "hoped for" outcomes were ruled out. Infectious Disease was testing for a very rare condition called TRAPS, among whose symptoms were recurrent fevers and eye swelling, but they weren't optimistic about this as a diagnosis. Rheumatology tests came back negative. And so, that left us with Hematology/Oncology who were testing for three possible conditions (neuroblastoma, granuloma, and leukemia) that would explain the inflammation and areas of rapidly growing cells found in Jade's bone scan, the thinness and brittleness of her bones, and legions found on her skull, shoulders, hips. At this point, we were grasping at straws... could falling out of the bed have caused this?
I'd like to say that I experienced a range of emotions throughout, but the truth is that powerlessness, anxiety, and disbelief were the only feelings I had enough energy to juggle. The combination of not knowing what was going on and watching our otherwise sassy and demanding little girl lie in a hospital bed for most of the day hooked up to IV fluids stripped me of everything inside. And while I was just able to maintain my composure during my talks with the doctors to hear and process everything they were saying, I was otherwise a sobbing mess or about to be one... I was constantly on the brink of a tearful outburst, whether on the phone with my sister, on the internet learning more about childhood leukemia, or helping Little Jay complete his homework in Jade's hospital room before he and Dad went home for the evening. We just wanted to take our baby home.
When neuroblastoma and granuloma were ruled out, our first bone marrow biopsy was scheduled for Friday, January 13, 2012. We prayed for a leukemia-free diagnosis, but if it were leukemia... please let it be acute lymphoblastic leukemia (ALL), which has a 90% cure rate in children. We learned later that evening that not only did Jade have leukemia, but she had acute myeloid leukemia, which has a 60% cure rate in children. www.lls.org. It would be almost another week before the subtype -- M7 -- was confirmed. The absence of leukemic cells in her blood and the particular subtype, which in children is most often found in kids with down syndrome, delayed the final diagnosis and prompted a second opinion from St. Jude's.
But once the doctors knew for sure, Jade was scheduled for surgery for a central line placement (when a catheter is inserted into a large vein that leads to the heart) that would be used to administer her chemotherapy treatments and a lumbar puncture (spinal tap)/introthecal chemotherapy the next morning. And so we began an intensive chemotherapy treatment plan that will see Jade hospitalized for the majority of the time until the fall. We remained in the hospital for another 33 days (a total of 49 from when we entered for the eye infection right after the New Year), during which time, she:
- had three additional spinal taps and rounds of introthecal chemotherapy (when chemotherapy is injected into the spinal fluid to prevent or treat cancer in the central nervous system)
- had ten consecutive days of her chemotherapy regimen, which consisted of infusions through her central line that ranged in duration from 15 minutes to 6 hours
- lost twenty percent of her admission weight (resulting in the use of a feeding tube)
- lost her hair, which while small in the grand scheme of things is now a constant reminder of how hard our little girl has to fight
- had two blood transfusions and three platelet transfusions
- maintained overall high spirits... dancing her way through the first round...
Thank you so much for sharing Taneika. Jade and your entire family are n my constant thoughts and prayers.
ReplyDeleteThank you for sharing. May God continue to bless Jade and her family.
ReplyDelete