Treatment Update: Beginning the Interim Maintenance Phase
January 16th, 2008 | by Emily | See all Treatment Update entries | 14 Comments
This week, Maddie began the third phase of her treatment for Leukemia. We have completed the induction phase (28 days) and the consolidation phase (28 days). Now we embark on the interim maintenance phase, which lasts 50 days. This phase does not incorporate any new medications from the previous two phases, but the frequency and route of some of the medications does vary. The standard medications for this phase are vincristine (IV), dexamethasone (the dreaded steroid) (by mouth at 2 separate 5 day intervals), mercaptopurine (a.k.a 6MP) (by mouth every day), and methotrexate (by mouth and intrathecally).
On Monday, we went to the clinic in Scarborough where most of Maddie’s treatment takes place. When she requires a lumbar puncture (spinal tap) or another procedure that requires anesthesia, we go to Maine Med. in Portland. We traveled through a great snow storm which left us with a foot a fluffy, soft snow. Once we arrived at the clinic, we were greeted by lots of smiling faces, especially the smiling face of Daisy, the therapy dog at the clinic. Daisy is a labradoodle. I had never seen one before I met Daisy. She’s a cutey; she’s tall and has white, soft, curly fur. Maddie absolutely adores Daisy. In fact, early on in her treatment, Maddie was very nervous about going to the clinic and the prospect of playing with Daisy was the only way we could get Maddie to go inside. A couple of times Daisy even got on the scale to show Maddie that it was not scary. Maddie gave Daisy a squeaky Santa chew toy for Christmas, and it was fun to see that it is still among Daisy’s stuff behind the desk at the clinic.
The waiting area at the clinic is full of toy and playthings for kids of all ages. Maddie particularly likes the kitchen.
She has quickly become very familiar with the folks at the clinic, the procedures, and the routine. She has a favorite treatment room – the purple room with the kitchen. All the rooms are very kids friendly. A family recently donated brand new flat screen TVs, and most of the rooms have a Playstation or XBox or one of those type of video game machines. Many of the rooms have beds as well as the standard treatment stretcher. Sometimes, when kids come to the clinic, they have to stay awhile either to receive an IV medication or a blood transfusion, so effort is made to make sure they are comfortable. Coloring books and reading books are also available to help entertain the kids.
This week, Maddie was receiving IV chemo through her port. So, on the way down to Portland, I stopped to apply the EMLA cream on her port. EMLA is a lidocaine based cream that helps numb an area of skin; thus, when the port is accessed with a needle, there is little to no pain. At the clinic, we are always greeted by one of the Social Workers. Liz is the Social Worker we work with on most visits. The Social Workers are such a valuable part of the treatment team at the clinic. They provide the families with support services, such as parent phone support groups and dinner support groups. They let the families know about special events or programs, such as the Shawnee Peak family season ski pass that is available free of cost to every family at the clinic. They help the kids create their “Beaded Journey” which is a wonderful collection of strung beads each representing a step in their journey through cancer treatment. They help provide distraction, like blowing bubbles, during procedures. Probably most important, the social workers just come in and chat with us as a family to help us manage this journey.
We also always meet with one of the nurses to discuss how our day-to-day management is going and discuss any concerns. We usually work with Bambi, but Jay and Cyndi have also helped us out during our visits.
Dr. Larsen is our primary physician, and he assessed Maddie and generally visited with us about how things are going. We also talked a bit of runner talk as he is a runner himself. Generally, I feel like Maddie is doing well, but I did chat with him about her occasional nausea/vomiting, the chemo having altered the way things taste to her, and intermittent leg pain.
After Maddie received her chemo, she got to visit the “Owee” box which is filled with little toys for the kids to choose from after a procedure. I chatted with Bambi about our treatment and medication schedule for the upcoming month and she gave me two of Maddie’s oral chemo medications to take home. Then, after a goddbye to Daisy and the rest of the crew, we were off to brave the snow storm.
I continue to be amazed and impressed by Maddie’s ability to cope with all that we are asking of her physically, mentally, and emotionally during this time. She’s a strong, positive, joyful kid who helps make this challenge more manageable.
She will continue to take a variety of oral medications daily until our next visit to the clinic.
January 18th, 2008 at 10:56 am (#)
I love the fact that they have a dog at the clinic. They are such wonderful companions and show so much love and empathy. Daisy sounds fabulous! Too bad Maddie can’t bring Sal along, or another favorite animal from the farm.
January 18th, 2008 at 11:50 am (#)
My daughter, Abby, was diagnosed with ALL on Nov. 16, 2007. She also goes to the MCCP. Dr. Larsen is her primary too. It sounds like we are about one week behind Maddie in treatment. Abby is due to start IM on Monday. I believe our paths may have crossed at BBCH in November. We look forward to reading about your progress and hope to have our paths cross again! Good luck to you Maddie! Happy Birthday! Abby just turned five!!
January 18th, 2008 at 7:19 pm (#)
Happy Birthday Maddie!
We go to MCCP too. Neve, our daughter who just turned 5 in November, was diagnosed with ALL in September of this year. We think your fundraising efforts are terrific! We are “recreational” runners (we fit it in when we can, and it shows!) – kudos to you on your training!
We will be rooting for Maddie, and all the kids at MCCP, as well as success in your Olympic Trials training. We also love Daisy the labradoodle, too!
All the best,
Gretchen, Phil, Finn & Neve Cawley
January 19th, 2008 at 3:24 pm (#)
Hi everyone! I am Neve’s Aunt Jen and help care for her during the week while her mom and dad are at work. I spent some time with Neve at Clinic on Thursday while she was receiving her blood transfusion. I am always impressed at how brave these children are and at how wonderful and kind all of the staff are to all the family members.
Emily, all the best of wishes for your journey to the trials – and for the long road ahead for your daughter and all the other kids at MCCP!
Love,
Aunt Jen
January 23rd, 2008 at 9:29 pm (#)
Hey Em
Lance ran into your mom on an airplane recently. She told us about Maddie. Know we are praying for her and your sweet family. What an inpiration you both are to so many people!!!!! Please let me know if there is anything we can do and have Maddie look in the mail in the next couple weeks for a little something special!!
miss seeing you
laura
August 25th, 2008 at 8:00 pm (#)
My daughter Lorri was dx on 6/7/08 will ALL and the two of us were looking at pics of Maddie and her port, access etc. She was encouraged to see the smiles on Maddie’s face, and when she saw the pic of her crying just after it was accessed and Lorri said, ‘it’s okay to cry’ thank you for sharing your family journey, we are on this roller coaster ride right along with you and will pray for continuous health and healing.
Sincerely,
Jane & Lorri Moore
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