Journal Entry

Wednesday, July 13, 2005

"Plans fail for lack of counsel, but with many advisers, they succeed." (Proverbs 15:22)

Dear Partners in Prayer,

Well, finally, we have a game plan for this devastating relapse/ progression situation. Yahoo!  And while it may not be the best plan – and it may not halt the disease progression at all, it’s a plan and we’re going with it!  It was nice to have options; we just wish there would be a promising treatment out there right now and sadly, that’s not the case for this evil type of childhood cancer.  That may come one day with research trials; however, until then we hope and pray for the best.  After consulting with many and after hours spent pondering, discussing and praying about the latest situation, she shall soon begin her new course of treatment.  The following is from Shayne’s listserv post to our NB support group which explains what we shall do:

Thank you to all who have volunteered information regarding available
treatments; our collective knowledge is a strong asset during periods of decision making.

Our tentative plan for Christi is this:  We will discontinue her current ABT 751. (She is day 7 on the 21 day cycle.) Next, after a week off, she will resume ABT 751 on a much higher dose . (Dr. Maris has not given us her new dosage level yet.) This will be administered on the "7 days on and 14 days off" schedule.

The logic is that Christi has had some very positive results from ABT 751:

  1. Reduced/stable marrow disease
  2. No side effects - essentially creating the "gold standard" in quality of life

There is strong feeling in me that wants to make sure that we have gotten all of the possible mileage out of ABT 751 before we abandon it completely. Once her disease is proven unequivocally resistant to this drug, it becomes one less option available to her so we want to be certain before moving on.

Furthermore, we will be changing the dose and schedule which could have an effect on the disease although there is no preclinical nor clinical evidence to suggest this.

We have chosen to not radiate the site of progression because we feel that her disease is slow growing so we "should" have time to react to it in the future.  Additionally, it will provide an objective barometer as to whether or not our new ABT-751 treatment is working.  Most importantly, it is currently not (yet) causing her any discomfort whatsoever.

Scientifically, if her disease responds to the increased dose then there is good case to be made that ABT 751 has a dose response effect.  If not, perhaps ABT 751 is an agent that is not dose and schedule dependant.

We will scan in 2 months and repeat this decision making process all over again.  Please feel free to express opinions on or off list; we will appreciate the feedback.

Thomas Team Dad

So there you have it!  We shall double her dosage from 100 mg to 200 mg per day, but treat for just seven days now instead of the lower dosage of 21 days straight.  We feel better now that we have a plan and until she experiences some pain we’re going to try to live in denial meanwhile continuing our research and pondering the next attempt of treatment.  "In his heart a man plans his course, but the Lord determines his steps."  (Proverbs 16:9)  I hope she does well with this much higher dose of ABT and is spared of the wicked side effects some have experienced.  She shall begin this new course of therapy on Friday.  If all goes well, I shall fly out to CHOP with her in mid-August for her tests/scans and to plan our next course of action.

Recently, Christi found a four leaf clover before church at the Sorrowful Mother Shrine close to the St. Peregrine Statue (the Patron Saint of cancer) that can only be a good sign!  She appears to be so strong; yet, I wish she didn't have to be.  So much of her childhood has been rudely stripped from her as she entered an “adult world” three years ago with her cancer diagnosis.  She’s like a fighter fighting with the skill of a trained boxer and with the grace of a prima ballerina.  At her tender age, she’s seen and endured more than many adults.  Christi’s taught us a lot about:  life:  faith, friends, family, love and compassion throughout her journey.  I’m proud to be her Mom!  Many times I have whispered words of thanks that heaven hasn’t yet taken her home - her home is still with us.  And we shall continue to treasure and cherish every day we have together!  As always, thanks for checking in and for your loving support.  We’ve been richly blessed!


PS :  So sorry I have not responded to any of the emails we have received.  We’ve read each one and truly appreciate your love and kind thoughts.  I just haven’t had the energy to hit “reply” since this beast reared its ugly head and wrecked havoc!  THANK YOU for understanding!

What’s Next:  She shall start her new BIG dose (200 mg.) of ABT on Friday morning.  She’ll take it for 7 days; have 14 days off and then repeat that cycle. I shall return with her to CHOP in mid-August for disease evaluation. Of course we pray for a full response; however, we would be THRILLED with no more progression and stable disease. We do understand that this isn’t a cure, but a temporary fix, yet we’re hopeful to get some mileage out of it before abandoning ship of this great drug.