Marielise's Journey

As most of our Family and Friends know our Daughter was  was Diagnosed Monday Sept. 11, 2017, with Acute Lymphoblastic Leukemia. We brought her to the Emergency Room at Hillcrest Saturday night Sept 9, 2017.She had a fever of 103.00 and a mono test came back positive. However, when further tests came we saw that all her blood counts were low as well. Her platlets were at 30,000 (normal 150,000) white blood cells that fight infections were at 70 (normal 1,500) and her Hemoglobin was at 8. (normal above 11)
She was transported downtown to Cleveland Clinic that night after the results had come in. Once at cleveland clinic, we found that she had broken blood vessels all over her body due to platlet drop and swollen lymphnodes were found along the neck. They took more blood and we spoke about the possibilities of this being more then mono. Sunday morning we met the Hematology Team and we were notified that afternoon after the cells were looked at under a microscope,that this was more then likely Leukemia, and that we would need to confirm with a bone marrow biopsy.
Monday Sept 11, 2017 10am she was taken into Surgery for the bone marrow aspirate and biopsy. By 4pm that same evening we sat down with the head of Hemotology/Oncology and were told that this was indeed Leukemia. (A.L.L) We went over a plan which will include 2 years of Chemotherapy. (Detail to come in future posts)
Tuesday Sept 12, 2017, she was taken into surgery again to receive a Mediport which is a device that is attached to the main vain near her heart and will be under the skin and accessed for all of her medications and chemo for the next 2 years. She was also give a Spinal tap and Spinal fluid was removed and was tested to make sure that no Leukemia is found around the brain and spinal cord. Some Chemo was then also added into her spine to prevent any Leukemia that may have been there. Note: We found that no Leukemia has been currently found in the cells that were tested from the spinal fluid. They will repeat the Spinal tap further down the road. She also received her first Blood Transfusion and Platlet Transfusion.
Currently, she will be receiving Chemotherapy Inpatient for 8-30days depending upon how her body can handle it. Otherwise we can leave at Day 8 to continue the intensive chemo outpatient. We are hopeful that she can go home next week and can continue outpatient for this treatment but we are unsure. After 8 days of intensive chemo she will be permited to return home if she 1. Has no fevers (a fever for a Cancer patient is 100.4) 2. If her white blood cells that fight infection are above 500 3. If she reacts normally to the medications/chemo.
Today she recieved her 1st Round of Chemo and with it her Journey continues.... We are hopeful that she will do well and that she will be cured within the 2 years. Our goal for this month is at the end of the 29th day not to locate any Leukemia within the cells.
Currently 96% of her cells show Leukemia.
This specific Leukemia is 90-95%curable as long as no Leukemia is detected within the cells after the 29th Day of Intensive Chemo.
If so, the percentage drops and more intensive chemo and options are sought. We are praying this is not the case.
Marielise is hanging in there. She is in pain and with the steroids she has experienced irritability and behavioral changes. We let her know what she is diagnosed with and what she should expect, including the Hair loss and roundness of the face and body.
She is working through this news.
As most know Marielise loves school. After receiving all the news, she did not cry or get upset until we told her that she would not be attending Elm street for the next 8 months. This is very difficult for her and we are going to be in contact with the school regarding Home education.
I know she would love if her classmates or any of her friends or family would send her letters of encouragement. She loves receiving mail and she really needs uplifting from those around her while she faces this challenge.
I know alot of people have been asking what they can do to help, my Aunt Lisa has started a sign on sheet through the website, www.takethemameal.com.
I have added the link to our www.CaringBridge.com website. Currently our biggest financial challenge right now that we seem to face is Transportation.
Any money collected will be going to traveling back and forth and any other costs regarding her healthcare.

Thank you all again for your love and support.
-Rachel and Mario

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  • Aurelia Smartt 
    • $50 
    • 25 mos
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    • 26 mos
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Organizer

Rachel Rodriguez 
Organizer
Madison, OH
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