Sunday, December 18, 2011

Charting a Course

There are many ways to get from Point A on a map to Point B. For us right now, Point A is current time and place. Mal is essentially recovered from her surgeries, and is as strong, vivacious and energetic as she has ever been. However, we know she stands a good chance of her cancer coming back if we do not take action - so we have to get to Point B. Point B is remission. Hopefully Mal will be as smart, capable and full of life once we get to Point B as she is now, and will also be much safer. There are many ways to get to Point B. We have chosen ours.

After many hours of deliberation, prayer, research and conversation, Rachel and I decided not to enroll Malorie in the clinical trial. We simply could not come to grips with the lack of evidence that the chemotherapy would provide a benefit. There is the chance that it would. We were not willing to pay the price to see if that chance came to fruition. As we discussed the trial with doctors, we also learned that all patients enrolled in the clinical trial would be treated with radiation to a smaller diameter around the tumor. I am not sure why this wasn't mentioned to us before we met with the radiation oncologist, as this information may have swayed our decision had we known more about it earlier, but we are comfortable with our decision nonetheless.

Malorie will get localized radiation to the area surrounding where her tumor was located in the fourth ventricle of the brain. Because they can localize the treatment, they can limit some of the complications that can arise due to the exposure to radiation. The upper chambers of her brain should not be affected by the radiation, meaning that she should suffer no cognitive impairments due to treatment (although she will be monitored for this through and after radiation). However, the radiation beams will have to exit through the front of her mouth and throat, which puts her at a high risk of having problems with her pituitary and thyroid glands. She will be seen by a doctor for several years that will specifically monitor her body's production of key hormones. This endocrinologist will treat Mal for any problems that may arise. There are also some more severe problems that may arise long term, but they are less and less likely the more and more severe they get, so for now Rachel and I are focusing on the short term effects of the radiation.

We were told by several people that Mal will likely not feel a lot from the radiation for the first few weeks of treatment. The radiation will slowly build in her system. But by the last week or two of the treatments, she will likely really be fatigued and possible not want to eat much. We have also been told that because of the localized treatment, nausea should not be much of an issue for us, so we are happy for that. However, the radiation oncologist did warn us that in addition to hair loss, Mal may also suffer some dry skin or minor burns to the site of the treatments.

Last week, on Friday, Mal got another MRI. Next Thursday she will get a CT scan, and those two images of her brain will couple to make the map of her brain that will be used to perform the radiation treatments. On January 5th, Mal will get a PICC Line embedded IV device implanted in her arm and chest, so that during radiation she will not have to get an IV everyday. Then, on January 6th we will begin her radiation treatments. Barring medical setbacks, we will arrive at Point B, radiation complete and the hope of remission on February 22nd (which ironically enough is one year to the day that I finished my final tour in the Navy and Rach and the twins boarded a plane for St. Louis). I just hope we picked a path with minimal road blocks and speed bumps.


  1. Ready to cheer Mal on during the course and praying the course is smooth. Looking forward to her arrival and at least 100 year stay at Point B.

  2. Thank you for the update. Your family is constantly in my prayers.

  3. I put your family on our church's prayer list. You are in my prayers and theirs as well. Your faith and courage for each other and your children are tremendous.

  4. we got your christmas card today. i cried as soon as i saw it, not just because of the 4 smiling faces that i adore, but because of what was simply seen in font at the bottom... "believe."

    we do, my friends. and we believe you all will beat this.

  5. You have to do what feels right for you and now that the decision is made, you can concentrate on forward progress.

    Bill and I have talked a lot about it since your call. We were so relieved that Sydney wasn't assigned to the chemo arm of the study and last night, Bill admitted that if she had been assigned to do chemo, he would have withdrawn her from the study.

    She took the radiation like a champ, though, and I know Mal will, too. If she starts getting burns -- Sydney's were like a sunburn -- Dr. Mansur's nurse will give her some great cream. The name escapes me, but it works wonders.

    Please know that our whole family is praying for you guys and that if you need anything during treatment -- or after for that matter -- you can call anytime. Merry Christmas!

    Mary Helen (Sydney's mom)

  6. many continued prayers for you all as you enter this next phase of Mal's treatment. we look forward to the celebration pictures that will be posted on 2/22/12.
    -the andersons

  7. Thank you so much for the Christmas card and honey! It was great to see all of your smiling faces. You are an amazing family and a blessing to everyone lucky enough to meet all of you. I will keep your letter and read it any time I question why I chose the PICU. Your kind words and hearing that Mal Pal doing well is a wonderful Christmas gift. I think of Mal and Micah every time I hear "take me out to the ball game". Please let me know if there is anything else I can do to help. Merry Christmas!

    Melissa (SLCH PICU)