Katie went to the clinic three days ago for IV chemo and antibiotics. As we went into the treatment area, we saw Ori and his mom. Ori is a 6 year old boy with Leukemia. He is a sweet sweet boy whose cancer replased a few months ago. Ori loves firetrucks and firefighters, and (if you remember) Scott brought a fire truck to the clinic for Ori and the other children to see one day. Anyway, we almost didn't recognize Ori at first, he is bald now and looked sick. We sat next to him while Katie got her treatment. We learned some new things that day at the clinic...
I asked Ori's mom how she found out that he had relapsed. She told us that Ori had completed his 3 years of treatment (treatment for boys is longer than girls). Six months after his treatments ended, Ori's mom said she was just beginning to relax and think they were a "normal" family again...and then everything changed - again! One day Ori's blood work came back bad (discovered at his monthly check-up). The next day a spinal tap confirmed that his cancer was back. So sad!!! The treatment is much more intense the second time around. Coincidentally, Ori was diagnosed at the exact same age as Katie (2 1/2). He was deemed "low risk" - which means he had the right genetics (triple trisomes) and good results on his "Day 8" lab. "Low risk" means you are at low risk for having a relapse - yet Ori did relapse. His mom said, "Ori doesn't know anything different, being sick and being at the clinic/hospital is all he has really ever known." They are a good family. Ori is a sweet and happy natured child - like Katie. My heart goes out to them!
I have a nagging worry about Katie relapsing. I know I can't live in fear of that happening... but the reality is, the fear is always there, because it is a possibility. The fear is something I have to fight to keep in the back of my mind and not in the front. Scott and I were surprised by a few other things we were told that day. First of all, we were surprised Ori's family found out so quickly about the relapse. We had been told (at the EV clinic) that if the cancer was back, it would take several bad blood tests in a row, over a few months period, before they would know the cancer was back. We were also surprised to learn that after the treatment stops, there is a 3 year "wait and see" period. The first 3 years after treatment is the time when there is the strongest possibility of the cancer returning. The biggest (and worst) surprise of the day was in talking with Dr. Dana about all of this. To our dismay, we found out that Cardon's Hospital (where we started) did not do the lab test they were supposed to do on day 8. Without that test, we do not know if Katie is "low risk" or "average risk" for her cancer to return. We know Katie has the good genetics, but without the "Day 8" test results, we can't and don't know if Katie is low risk or average risk. Dr. Dana said it doesn't really matter at this point, because we have done all we can possibly do. She said, "The rest is in God's hands." She is right! Scott and I did not opt for a (trial) lower level of treatment, even though we could have. We choose to stay on the "standard treatment plan." Because of that choice we made, we have given our daughter a greater chance of not relapsing after her treatments are over.
Children who are on the trial treatments get less chemo than those on the "standard" treatment plan. On the standard plan, Katie went through one extra round of Intermaintance. In the trial, the doctors are giving less chemo to "low risk" patients to see if they can give less chemo and still have the same outcome. Scott and I could have opted for the "low risk" plan, but we felt very strongly we should go with the proven treatment plan rather than the experimental. Even though Katie got a little more chemo now, it lessened the possibility of her relapsing - and Katie having to go through the treatments all over again. Because we choose that route, it REALLY is in God's hands. We have done all we can do. If Katie relapses, we won't ever have to wonder if it was because we choose the low risk treatment. (Although more chemo now can come with it's own consequences too). For now though, Katie is doing great and she is responding. We may not know if Katie is low or average risk, but we feel blessed Katie is not in the "high risk" category. We are glad Katie has the right genetics which gives her a greater chance for a more positive and hopeful outcome!
Today is Katie's 3rd day of steroids (for this month) and it has brought it's usual results. She is hungry, upset, weak and tired... I hate what the steroids do to her - although I appreciate what they do for her - they are part of the chemo process to help save her life. So we will do whatever we need to do.
Katie is the sweetest little angel there ever was. We love her so much! I try to hold all the fears and worries back and just enjoy each day I have with her - Enjoying her is easy, because she is such a joy!!! Holding back the fears is not so easy. I know it is pointless to worry about things that may or may not come. My focus is my family. I love my husband and I love my children - they give my life meaning and purpose.
It is important to cherish each day we have with our families. President Thomas S. Monson has commented, "Time passes quickly... We cannot call back time that is past, we cannot stop time that now is, and we cannot experience the future in our present state. Time is a gift, a treasure not to be put aside for the future but to be used wisely in the present. ("Dedication Day," Ensign, Nov. 2000, 66).
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