We are honored to be featuring little miss Milly! She stole our hearts instantly and we know she will yours too! Please take a minute and read her story, written by her mom Jen. We love you Milly!
The story to get Milly’s diagnosis is not your typical one. Normally, Leukemia is diagnosed relatively quickly. A simple blood test is generally all it takes to point the doctors in the right direction. Milly’s diagnosis journey was not that simple.
Prior to the start of Milly’s symptoms she was a rambunctious, happy, healthy, smart, independent 2 year old. For me, watching my children grow and progress by learning to sit, crawl, walk, and talk is my greatest joy. Try to imagine watching your child suddenly begin to regress. Our Bug stopped walking, crawling, and communicating.
This is our story.
Milly’s symptoms started in the end of October 2013. She had not wanted to put any weight on her left leg and a weird bump had shown up on her left cheek below her ear. We took her to the ER to be evaluated for leg pain and what doctors suspected to be an overactive lymph node. Milly was prescribed an antibiotic for her lymph node and we were instructed to follow up with our pediatrician. When we followed up with her pediatrician, he began to connect the dots. This would be the first time we were told that she might have cancer. The doctor ordered blood tests, x-rays of her legs, and chest, and measured the swollen lymph node. He called us an hour later informed us that she did not have cancer. We were told “everything is normal”, and “there is nothing to worry about.” We were relieved, but frustrated because her symptoms continued.
Two days later the lymph node on her left cheek had grown to about three times in size and was very red and warm to the touch. Milly developed a red rash all over her core and she was still limping. Back to her pediatrician we went. The doctor diagnosed her with an allergic reaction to the antibiotics and prescribed a different one. He attributed her limping to growing pains. Mitch is very tall and had growing pains in his legs growing up. Milly is very tall for her age, so we accepted that diagnosis.
A week later Bug spiked her first fever. She was still limping and her lymph node was still swollen. We took her to the ER at Primary Children’s Hospital. The doctor requested blood tests…again. We are told that her symptoms were not a result of cancer. The ER doctor referred Milly to an ENT (Ear, Nose and Throat specialist) to have the lymph node examined. Her appointment was a week later.
November came and along with it Thanksgiving, our Anniversary, and Milly’s 3rd Birthday. We tried to keep things as normal as possible for Milly and Jasper (who was now 7 mos. old). Meanwhile we continue to watch our Angel deteriorate and we are constantly assured by the nurses and doctors that Milly is fine and that there was nothing to worry about. Despite our many efforts to get answers, there were none.
It’s now December.
The ENT examined Milly. He ordered blood tests and preformed an ultrasound on the lymph node. After receiving the results his recommendation was to surgically remove the swollen lymph node. Surgery was scheduled for the end of December. By this time Milly was regularly spiking fevers as high as 104.0. She hasn’t been walking or crawling for about a week. Waking up in pain multiple times a night has become the norm. When she did sleep, she was so fretful, constantly rolling and moving trying to get comfortable that she’s hardly getting rest at all. Milly is completely dependent on us for everything, and is finding it difficult to communicate what she is feeling. The doctors advised us to alternate Tylenol and Advil to manage her pain; however the medication did nothing to ease her discomfort. The doctors attributed all of her symptoms to the mass on her face and hoped that once it was removed she would get better.
December is a time for decorating, Christmas shopping, parties, and that all important visit and picture with Santa. Milly’s surgery has been rescheduled for the 19th of December. Milly has not walked for two weeks by this time. After the visit with Santa, we were taking our little family home, when we hit a bump and the pain hit Milly so bad that she was inconsolable. We had no choice but to take her to the ER at Primary Children’s Hospital and refuse to leave until we got answers. We asked the doctors to run whatever tests were necessary regardless of cost. The medical staff ran blood tests and took X-rays of her left leg. The blood tests returned normal, however the X-ray revealed a black spot just below her knee. The result of the X-ray was what prompted the doctors to admit our baby bug into the hospital.
Over the next two days we repeated Milly’s history over and over to nurses, residents, fellows, and attending doctors. We were assured that Milly’s blood tests were normal and cancer was not a consideration. Eventually, her team ordered an MRI. Milly was administered anesthesia for this. When the results returned our main doctor took us aside and told us that her left leg had a fracture just below her knee and they were going to give her stronger medication to control her pain. She also told us that there are three possibilities to explain Milly’s symptoms. The team wouldn’t know for sure until they could get her into surgery. There were three possible diagnoses under consideration, bone infection, Leukemia or Lymphoma. We had to wait 24 hours before Milly could put her under anesthesia again. This surgery and tests that would hopefully provide a diagnosis.
On December 17th 2013 Milly went into surgery and we waited for the answers we had been searching and fighting for since October. Before Milly was back to her room her doctor led us into another room and introduced us to an Oncologist. He informed us what no parent wants to hear. Milly, our beautiful, happy, independent three year old has been diagnosed with Leukemia. I can’t describe how I felt in that moment. I was relieved to have an answer for what was afflicting our daughter. At least we had a direction to head in. However, hearing that your child has cancer is an experience no parent should have to face. It is difficult but it is something we will face head on every day.
At this point we were transferred to the cancer ward of Primary Children’s Hospital and Milly started treatment immediately. A device called a port was inserted in her chest above her heart, where she will have chemotherapy pumped directly into her system. The port is also where her labs will be drawn from. An Echocardiogram was administered to get a baseline reading of her heart. The medications that we are required to give her will cause heart damage. She got the first of many Lumbar Punctures and they put chemo directly into her spinal fluid. We met with her main Oncologist, and he explained Millys “roadmap” for the first phase of treatment. Over the next few days we met with a Physical Therapist to evaluate Milly so we could start the long road to get her walking again. We met with a dietitian to discuss her diet, and a pharmacist to learn her prescriptions. In addition we were assigned a social worker to help ease the transition into this new phase. We met with nurses who trained us how to care for Milly. Instructions on all of the activities we could and could not do with her. There is a list of signs to watch for, when to call the doctor, and when to go straight into the ER. Mitch and I felt like brand new parents, like we had to relearn how to care for our own daughter. It was difficult and exhausting.
On December 23rd 2013, and a week and a half after Milly was admitted; we received a discharge and were sent home armed with a binder full of information and instructions. Also included is a bag full of medications and more medical supplies than we have ever had in our home. We were so grateful to be able to be home as a family for Mitch’s 28th Birthday and Christmas. It was amazing and utterly terrifying to be home and responsible for all of her medication and care.
Jasper was such blessing through all of this; he was carted from one Grandmas house to another. Was such a trooper about switching exclusively to formula (I had to stop breastfeeding). His schedule was all over the place so we could focus all of our attention on Milly.
 Today, Milly is in the delayed intensification phase of treatment. She is adjusting to her new routine as we go to the hospital for chemo. She has to undergo anesthesia for lumbar punctures at least once a month. Milly receives anywhere from 5 to 10 medications a day and she lost her beautiful curly blond hair. On January 23rd Milly took her first step with the assistance of a physical therapist. It was a day of celebration! Most days she is that rambunctious, happy, healthy, smart, independent (now) 3 year old that we once knew. The pure joy that Milly has in her heart is inspiring. She amazes us more and more every day and we are so grateful for every moment we are blessed have with her. She is our little superhero.  |
It hurts my heart to read that it took so long to find the correct diagnosis. But, I am so touched by your smart, beautiful daughter! I'll be praying here in Minnesota!
ReplyDeleteHugs to Sweet Milly ~ Jo