It's June 20th. For the first 43 years of my life that date held no special significance to me, rather it was just a hot summer day filled with activities. That changed in 2019.
I remember getting a call the day before telling me as a follow up to Millie’s ER visit on Tuesday June 18, that Children’s Liver specialist wanted to see her on Thursday June 20. I packed an overnight bag. My mama’s heart was heavy thinking something must be really wrong with our girl. Months of ‘thinking’ something is not right but not being able to pinpoint it was finally coming to light.
Millie and I went to the appointment that morning by ourselves. The Physicians Assistant and I discussed many different things but as usual Millie looked and felt good that morning. There was no obvious signs as to what was wrong. I remember even texting our church prayer chain an update saying “They think she may be suffering with Celiac disease”. We left the appointment with two more tests to complete that morning. A CBC lab and an ultrasound. The hospital was so busy that morning. We headed to the lab, but the line was so long we decided to get lunch and come back. We even met a dear friend from our area (hour + away) in the lobby and got to visit for a few minutes.
After we ate, we went to our ultrasound appointment. Daddy had planned to meet us for that part of the trip. When the ultrasound started daddy hadn’t arrived yet. I told the technician Millie’s daddy was coming from work and we realized her dad worked at the same company. As the ultrasound went on the tech became less chatty and her face grew very serious. I remember saying “If you see something I need to know before we leave today. We have driven a long way to be here”. She assured us she understood and ask us to wait in the waiting room for a doctor to call. By this time daddy had arrived and waited with us.
I don’t know how long we waited just that the call came to go to the 10th floor oncology clinic. I’m not sure we even knew what oncology meant, but we were scared. I was sure Millie must have leukemia. That seemed the most logical reason for the intermittent fevers in my untrained mind.
We met with the oncologist on rotation that day, Dr. Khan. Before they sent him in, I placed a quick call to my only friend that had experience with leukemia. She answered that day, praying with us and reassuring us that Dr. Khan was her son’s doctor. Hearing that encouragement we hung up and started the exam. As the doctor spoke that day my mind heard many things. It heard tumor on the kidney, not sure what it is yet, starting chemo that week and so much more. We didn’t scream, but our eyes were drowning and our hearts breaking.
Sometimes in life you are given a shock that helps to dull your understanding. We were blessed with that dullness of understanding that day. What we, I especially, did not hear was Neuroblastoma. It would have jumped out to me immediately. As many of you know, we had family friends that lost their precious son to this disease about 13 years earlier. Our hearts were broken for their family. Our church family rallied around their family, but it was a devastating painful loss. We remembered that walk all to clearly.
We left the appointment that day ‘hearing’ that our girl was very sick but never dreaming what was to come.
Sunday morning as the sky dumped buckets of rain and my eyes dumped buckets of tears we arrived to start the fight of the horrible beast. We learned and ‘heard’ that day that they thought it was stage 4 Neuroblastoma. A week later on Daddy’s 46 birthday they confirmed their suspicions.
Over the year long treatment schedule Millie endured: At least 10 sedated CT-scans and MIBG scans. 6-8 ultrasounds of the abdomen EKG and Echocardiograms 8-10 Audiologists screenings diagnosing mild to moderate loss 16 rounds of chemo 9 rounds of Immunotherapy Months of DFMO Research study A Broviac placed (and repaired) A Gtube placed and night feeds 5 Bilateral Bone Marrow Aspirations Stem cells harvested and stored 2 PICU stays 2 Liver Biopsies Around 20 IV’s places 2 Foley Catheters Close to 65 dressing changes Lab draws Stayed in the hospital almost 18 weeks Had close to 15 blood, platelets, and plasma transfusions.
Then, on June 24, 2020 we brought Millie home on hospice. Those words still gut punch me. How does a baby ever need to be put on hospice? For the next 14 days we cared for her, each day waiting and wondering if we would be walking her to heaven that day. Praying, begging that we be allowed to keep her. Sobbing, knowing that short of miraculous healing, death was coming and it was the only thing that would relieve the pain she felt each day.
Now here we are two years later, walking through just the memories of our girl--of our tremendous loss.
The days are hard and I will be honest, these thoughts are never far from our minds. Yes, we go on. Yes, we complete the daily task of living in the here and now. We try to make new memories with our family. We wipe our tears, mostly in private now. But we never forget what we have walked through, the pain it has caused, or the little girl that the world no longer is blessed to have.
I share her memory here in hopes that as you walk through hard things, devastatingly hard losses, that you will remember a little girl named Millie whose story points to the hope of heaven. Let it remind you of Millie's Mama and Daddy who cling to Jesus as their daily strength to walk this grief journey. May our pain be used for His glory and other's salvation. We will see Millie again as we enter Heaven with Jesus.
~Telling Christ’s story {Because of Millie}
︵‿︵‿୨☆୧‿︵‿︵ ☆｡･:*:･ﾟ★,｡･:*:･ﾟ☆ ｡･:*:･ﾟ★ I still believe in Millie’s Miracle ☆｡･:*:･ﾟ Hebrews 11:1 ｡･:*:･ﾟ☆ ︵‿︵‿୨☆୧‿︵‿︵
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