Treatment Update: Light at the end of the tunnel and a request for help…

It seems as though much of what we face with Maddie’s treatment has become quite routine.  We are certainly glad to have our hospital visits become less frequent, and we are still getting accustomed to some of the process with Dartmouth Hitchcock, but overall much of the journey at this point is on cruise control.  We are enormously thankful that we have been fortunate enough to avoid any extenuating complications or difficulties with the course of treatment.  Maddie continues to move ahead with perseverance and tenacity, and, sometimes, with humor that is beyond her for the moment.  Recently she and Emily sat down to practice her writing, and Maddie asked if they could spell out all her medications.  I don’t know many other five year olds who ask to practice spelling methotrexate and mercaptopurine.  Maddie feels great and her hair has come back with curls much like her mom.  Most folks who meet her do not know that she has been sick, which is wonderful for us all.  Perhaps the toughest part of the current routine for our family is taking the oral medications every night. We often find ourselves thinking wistfully towards a future without daily mercaptopurine, dexamethasone, prevacid, etc.  By January 2010, barring any set-backs, we will complete the course of treatment and turn the page on this chapter of our lives.  All three of us are very eager to have an evening where we do not have to ask Maddie to choke down pills crushed in chocolate syrup.  We play all sorts of little games to convince her to take part, and, regretably, we sometimes have to take away a favorite toy or blanket until she takes the med.  Maddie always rises to the challenge, but sometimes it is not much fun.  We continue to receive excellent treatment from the kind folks at the Norris Cotton Cancer Center at Dartmouth Hitchcock.   Maddie now calls it “my hospital” when she hears radio spots for the hospital.  As we did in Maine, we are hoping  to give back to the people at the hospital that have done so much for us.  On July 11, we will be taking part in the 2009 Prouty, a major fundraiser for the cancer center.  Emily and Maddie will walk in the 5K walk, and I will ride in the 100 mile bike ride.  We are hoping to raise what we can to support the work of the center.  We would ask those who are willing to make a contribution on our behalf to do so by going to and click on Sponsor Participant.  Simply enter Brad Johnson, Emily LeVan, or Madeline Johnson, and you will be on the way towards helping us with our goal.  Thanks in advance!

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