Treatment Update: Light at the end of the tunnel and a request for help…
May 13th, 2009 | by Emily | See all Treatment Update entries | 5 Comments
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 www.TheProuty.org 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!



May 13th, 2009 at 4:01 pm (#)
Emily, Brad and Maddie,
I am on my way to http://www.TheProuty.org. Many of us wish you guys were closer, also. It sounds like things will not be getting easier anytime soon. It also sounds like you guys are having fun while “healing”.
Be well,
chuck and tracey + Norman and Rusty
May 14th, 2009 at 7:21 am (#)
much love and many kisses
swl
May 24th, 2009 at 9:46 am (#)
We miss you guys and are always excited to support you in your journey to grow and give back! Our best to the whole family and all the farm critters too. Have fun out there in the soil, the pasture, and out on the road! Much love!
June 27th, 2009 at 11:13 am (#)
I was running down by Chewonki the other day and thought about how the Johnson/Levan family was doing and most importantly your daughter. Glad to hear that things while still moving forward are going well.
The runners on the midcoast of Maine miss Emily’s and dedication and energy. The same is true for the folks over at Miles.
Best to the family and hope all is going well this summer
July 5th, 2009 at 12:58 pm (#)
Brad, Emily, Maddy!
I’ve been thinking about you all a lot lately, as I get ready to head back down to Chewonki to work with Margaret and Jeremy for a second summer on the farm.
I’m so glad to read that Maddy is doing well and that you all continue to battle this like that well-oiled machine.
Seeing Maddy in such high spirits last August at the reunion put so many of my worries out of my mind.
She’s terrific.
You all are.
Please take care,
I’ll miss you on the Neck.
Cammie
MCS 39