Two Trials

First, we must apologize for the lengthy delay in updating the site.  Life since the Trials has been very busy for all of us.  Shortly, after the Trials, I started working in Vermont where we had purchased our farm in early February.  I ended up commuting back and forth for all of the month of May.  Three days in VT and four days in ME each week made for little time for catching up on the website.

The day we got home from Boston after the Trials, I asked Maddie if she would let me shave her head; her hair had been falling out in clumps during the previous week and Brad and I thought it might just we easier for all of us if we got rid of the final patches of hair.  Maddie was game, so out came the clippers and it was done in a matter of seconds.  Brad and I talked with Maddie in some detail about the fact that people might look at her differently or ask her why she doesn’t have any hair.  Her reply was “It’s no big deal.  I’ll just say the medicine made my hair fall out.”  Clearly since last November, Maddie’s body and physical appearance have changed; one could surmise that she was ill.  The bald head, however, is such an obvious outward declaration of cancer, and I was struck by how people react to a bald child.  Maddie seemed oblivious to it, but I was initially sensitive to the fact that when we walked into a restaurant or someplace that Maddie’s bald head would capture people’s attention.  With our friends it was no big deal, because they know Maddie so well and we have all talked about all the aspects of her treatment openly.

Maddie had 3 intense weeks of treatment after the Trials, but she weathered the storm very well.  Kudos to her and her rocking dad for getting through a marathon treatment day while I was in VT one week!  I think they arrived at Maine Med at 9am and didn’t leave until 9pm.   In mid-May, she finished Delayed Intensification and got a two week chemo holiday.   We all enjoyed the break and by the end of May Maddie had lost most of her steroid weight and her energy level was much higher.

June 2 was a big day for our family on several fronts.  For one, Maddie began the Maintenance phase of her treatment.  This phase will last for about 18 months, which means that she should finish treatment right around her 6th birthday.  Wow!  What a birthday present.  We also had our last treatment at the Maine Children’s Cancer Program and at Maine Medical Center.  We want to thank everyone in the ASU unit at Maine Med for taking such great care of Maddie during her lumbar puncture procedures.  While these nurses and anesthesiologists are not officially affiliated with MCCP, they also played a vital role in making our experience positive and our journey a bit easier.  It was with sadness that we said good-bye to Chris, Dr. Eric, Bambi, Daisy, and the entire crew at MCCP.

It was also on June 2 that we packed up the all the rest of our belongings in Maine (including our Jersey bull calf named Benny) and drove to our new home in Vermont.  We joked with the folks at MCCP that we looked like the Beverly Hilbillies as we had a pick-up truck filled to the brim (actually it was overflowing) including Benny, the mooing cow.  Luckily, Brad didn’t have any significant losses along the way and only received a few strange looks from people as they heard the mooing cow in the back of the truck.

We’ve spent the last month settling in to our new life in Vermont.  I’ve been working full-time in the ED at Central Vermont Hospital and we’ve managed to add another cow (named Jerry) and 2 pigs to our family.  Sixty-five chickens will arrive in a week or so.  Maddie and Brad have been busy planting the garden, feeding piglets and calves, building chicken pens, stacking firewood, and more.  We’ve decided to name our place ALL Together Farm, as a symbol of our family’s (and when I say family I include family, friends, and supporters) ability to tackle Maddie’s disease (Acute Lymphoblastic Leukemia) together as a team.

We transfered Maddie’s treatment to Dartmouth-Hitchcock Medical Center, and she had her first treatment there yesterday.  She loves “my new hospital” as she calls it, and didn’t bat an eye at getting her chemo at a new place with new and different people.  Her treatment for the next 18 months is exactly the same on a month-to-month basis.  Oral chemo every day, steroids 5 days per month, IV chemo once a month, and lumbar puncture once every 3 months.  Maddie now knows the names of all of her meds and even helps pour the liquids into syringes and crush up the pills.  Her hair has started to grow back.  She now looks like she’s got a very short crew cut; in fact, on days that she’s not wearing a dress (which doesn’t happen very often), she often gets mistaken for a boy.

While our journey is still a long one, we feel like we have made our way through the most challenging part.  I don’t know as if we will ever feel like we are “out of the woods” as far as this cancer thing goes, but we feel confident in our path and our ability to tackle the future challenges together.

Brad, Maddie and I plan to continue to make submissions to this site periodically, as we know that many folks want to know of Maddie’s progress.  We thank you all for your thoughts, prayers and support over the last several months.  We are a fortunate bunch.