9/3/19 Remission, Survivor, Cured, NED

August 2019, catching those last beach days of summer.

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Reese and Quinn are at their third day of kindergarten today! What a joy, what a blessing. The incredibility of this is not lost on me and I am in awe of the power of prayer and medicine. I keep Dr Chris aware of Reese’s milestones and he is proud, always responding and always making me feel safe. I am his second biggest fan. (You can guess who his first is.)

My girls are doing 1/2 day kindergarten, so I pick them up at 11:25. This is an incredible option, because they also offer “full day” that ends at 2:10. But there is also a third option. One of my favorite things about District 36 is that it allows elementary students the option to go home for lunch. That’s right, they get a 1 hour lunch, and the option to recharge at home, with family. When I first started at Greeley (in 2003) more than 1/2 of my class chose to go home each day. I think those numbers have fallen in recent years, but it is still an amazing option… and such a throwback in some ways! And if you know me, you know I love that. An option to fit every child’s needs.

September is Childhood Cancer Awareness month. Before my daughter had leukemia, I didn’t really understand what it was. I remember the moment the doctor said, “I’m sorry but your daughter has leukemia.” I knew it was bad, but I did not UNDERSTAND. Why would I, childhood cancer had not touched my life, I had only heard bits and pieces. Little did I know that it was the leading cause of childhood death by disease in this country.

There are terms associated with cancer. Terms I hope you do not know first hand, that I am learning through this process.

Survivor

Cured

Remission

NED (no evidence of disease)

Believe it or not, there is a lot of debate and differing opinions on how and when these terms are used. I am learning and I am going to tell you MY personal beliefs.

Reese is a survivor. She has been a survivor since she was first diagnosed and she SURVIVED the PICU, chemotherapy, a bone marrow transplant, complications… she is a survivor because she started kindergarten, takes gymnastics, and fights her nemesis (the stairs) every day of her life. A life that is fruitful and important and one that she is LIVING! That makes her a survivor.

Cured, remission, and NED get a little hazy. Doctors use the word remission, not “cured”. This is because, while they are checking her marrow carefully, that can not see everything. And cancer cells can hide. Reese is in remission because she has achieved “no evidence of disease”. We know this for three reasons. The basic, she has no leukemia visible in her blood. Next, she has 100% chimerism (all donor marrow, no sign of Reese’s.) But most importantly, when UCSF performs a bone marrow aspiration, they look for her previous mutations, RRAS2 and JAK3. They check thousands of times, looking for a mutation. Since July of 2018, they have NOT found one, and this is why Reese has no evidence of disease. So I say that Reese has been in remission for ONE year. The magic number with JMML seems to be two years in remission. I have been told that if a child is going to relapse, they do within two years with a MUD transplant (unrelated donor) while sibling donor transplants can be much farther out. I don’t completely understand why, but I know that it has to do with graft vs leukemia. We also know odds are in Reese’s favor for continued remission, according to groundbreaking UCSF research that she was a part of (that I will be sharing here SOON!! I can’t wait, I will post as soon as it is available to me!)

Last night we said goodbye to summer at a pool party. I sat back and watched my little girls swim, thanking God for how far we have come. Now we move onto fall, holding on to the beautiful memories we made this summer. A friend Rachel shared a quote, I will share it here:

β€œAll I can remember now of that summer is the hot summer sun & how we were together.”

Amen.

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11 thoughts on “9/3/19 Remission, Survivor, Cured, NED”

  1. Thank you, Jennifer, for sharing Reese’s story with us all. You have drawn us in and we all share your pain and your joy! Only the best of wishes come your way!

  2. It has been quite a journey, I am so happy for all of you and so happy the girls are doing so good. I thank God every night for the wonderful day. Prayers πŸ™πŸ™πŸ™ for all. πŸ’–β™₯οΈπŸ’–

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