Further Diagnosis

Emily is always eating!

This week marks the end of Emily’s official Induction period. The first four weeks of treatment are supposed to provide the greatest reduction in Emily’s Leukemia cell count and indicate how extensive her treatment will be in the years to come. A meeting on Monday with Emily’s lead Oncologist and two surgeries on Tuesday gave the family a better sense of how Emily is doing and what lies ahead.

One of the remaining open questions from Emily’s original diagnosis was the level of Leukemia found in her spinal fluid. After extensive testing, the results came back as standard-risk Central Nervous System Leukemia (CNS 2). This means Emily’s Leukemia is a higher risk level and will require more extensive treatment to fully eradicate the Leukemia cells from her body. The doctor told the family this news is “not horrible”, but nonetheless, we all were praying for different results.

On Tuesday, Emily had another spinal tap and bone marrow biopsy. The fluids from these procedures will be tested to show how successful the treatment over the past month has been. If the tests reveal 5% or less of Leukemia cells, Emily will be considered in remission and her treatment will move on to the Consolidation Phase (a 6 to 9 month period of intense chemotherapy). If there is higher than 5% Leukemia cells, she will continue the Induction phase of treatment until complete remission is reached.

Being held by Grammie

One of the drugs Emily has taken daily during the Induction phase is a steroid that helps kill the Leukemia cells. Unfortunately, steroids are not nice drugs. They increase appetite and decrease mood stability. Emily is cranky and moody. She wants to eat constantly but changes her mind about what she wants quicker than the food can be taken off the shelf. She is not sleeping well and she continues to not walk. She occasionally lets other people hold her but prefers her mother, so Christina is very limited in her own ability to get rest or take care of things around the house.

Despite the increased appetite, Emily has not gained weight in the previous weeks. She is eating and nursing but the weight is still dropping off of her – leaving her arms and legs extremely thin and dropping her down a full diaper size. The doctors are watching her weight carefully, as this is not a normal result of the Induction phase. Emily has also had consistently high blood pressure readings that resulted in her being put on medication this past weekend. Since beginning the medication, her blood pressure has decreased but it will continue to be monitored carefully.

Emily stopped taking the steroid on Wednesday, at the end of her Induction phase. It is possible she will experience withdrawal symptoms going cold-turkey, including worsened moods and achey muscles. We are praying that going off the steroid will eventually result in a happier Emily – more cheerful, less achey, and not needing to eat all day long! We also hope that she will eventually feel well enough to begin walking once more. If she continues to stay off her feet, the doctors have said she may need rehabilitation to address this mobility challenge.

Emily will go in for another Oncology appointment next Monday to get the results of Tuesday’s surgeries and hear the plan for moving forward. That is when we will know whether Emily is in remission or will have to return to her Induction phase medications, including the steroid. Her diagnosis as CNS 2 lowers her permanent cure rate but we continue to believe in a 100% cure through prayer.

Family Movie Night!

Please pray for Emily this week as she recovers from two surgical procedures and deals with withdrawal from the steroid. 

Please pray for Christina and Jason as they care for Emily at home. Pray that they are able to get rest and take care of the daily needs of their family as they struggle with finances, scheduling, and educating their kids. 

Please pray that Emily’s tests show a complete remission allowing Emily to move forward to the next phase of her treatment. 

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5 responses to “Further Diagnosis

  1. This little darling’s trials have really hit home for me, having a young daughter named Emily myself. This particular post really made me tear up, because my Emily had those same piggie jambes when she was younger.

    I wish you all the very best, and pray for you daily. I can only imagine what you’re dealing with.

    Patricia (Martin) Henderson
    (former CCBC member)

  2. Sandy, Jeremy, Caleb, Caleigh & Chloe Sandusky

    We are praying for you and understand the ups and downs. Please let us know if we can be of any help. Even though we are in Texas, all we have been through with Caleigh was a very quick learning lesson. Caleigh did many of the same things Emily has, and when the time is right, therapy is a wonderful tool. She’ll do it all on her time and you will learn to be patient.

  3. I am the treasurer of a non-profit org that started 2 years ago to help families with children who are being treated for cancer. We would love to help you financially to off-set the extra-ordinary expenses of day to day. There are no strings whatsoever. Please go to “DylanHopeandStrength.org” to read our story about Dylan, and simply fill out the application. Again, we would love to help you. May God bless you and little Emily!!

  4. Pingback: Down the Road … | emilyannelove

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