Treatment Update: Beginning the Interim Maintenance Phase

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.

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