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.

Going into the race, I was unsure of my fitness level.  I knew I wouldn’t be setting a PR yesterday; my primary goal was to feel good and enjoy the experience.  I started in the back of the pack and was happy by how I fell into a nice rhythm early on, despite a fall at mile 2 which left me with “road rash” on my shoulder and knee.  I ran mostly 6:15 pace for the first half of the race, and slowed a bit during the second half, although I’m not sure by how much, as I decided to quit checking my splits around mile 15.  My finishing time was in many ways insignificant; I wanted to enjoy “the ride”, for the journey to get to this point had been a long one.  My final finishing time of 2:45.45 was the slowest marathon I have run since well before Maddie was born, but this race was probably the sweetest victory of any race I have ever run, trumping a then-PR performance at the World Championships in Helsinki in 2005 and PR performance at Boston in 2006.

I was completely overwhelmed by the outpouring of support for me, Maddie, and Two Trials, as I ran along the loop course.  I loved getting to recognize many of these people in the crowd, as they have truly helped to bolster me and my family not just on this day but throughout the last several months.  Family, friends, and people who I didn’t personally know, but have followed our journey, deserve a big thanks for helping us reach one of our goals.  I enjoyed getting to celebrate this accomplishment with all of you.

One of my post-marathon rituals is a cheeseburger, fries, and either a chocolate milkshake or a beer, but, after getting back to the hotel and chatting with friends and family for a while, I started to feel nauseated.  Yuck!  It was especially a bummer because David had bought 6 tickets to the Red Sox game which started at 1:35pm.  I had to rally!  After a brief collapse on the bed in my room (no puking was involved), I choked down a banana and some water and started to feel like a new person.  Brad and I were able to meet the gang at the game by the 3rd inning only to find that the Sox were down 2-0 and Manny had just been tossed from the game.  It turned out to be a great game; the Sox slowly worked their way back and took the lead in the bottom of the 8th inning.

Jeff, my coach, said,”The race will come a go before you know it.”   Even though getting to the starting line seemed to take a Herculean effort, the 2 hours and 45 minutes did pass by quickly.  I will keep, however, snapshots of the experience in my mind - the groups of friends and supporters scattered along the course, my family stationed near the start/finish line, and Maddie on Brad’s shoulders shaking a little red cow bell and cheering furiously.  Having her here and able to enjoy the experience was bigger and more important than any PR.

While my Trial is over, hers continues as furiously as ever.  She didn’t make her counts on Thursday, so this morning I’ll draw her blood again and run it to a hospital here in Boston, hoping that she will now make counts and be able to have treatment on Tuesday involving a lumbar puncture, two new IV chemo medications and one new oral chemo medication.  Surprising to me, too, is that her hair has started to fall out in chunks; she is now nearly bald on top and in the back.  I suppose the fact that it is falling out is not surprising; it is something that we had prepared ourselves for early on.  When it didn’t happen initially, we thought it wouldn’t happen at all.  I’ve had a hard time with it, as it is yet another physical manifestation and reminder of her disease.  Maddie, however, isn’t phased by it; she just chuckles and hands me chunks of her hair.  So, I try to follow the lead of “Little Miss No Big Deal” (as her Aunt Kelly likes to call her); it will always grow back…

And if you’re wondering, I did finally get my cheeseburger, fries, and beer.

Wow! We just added the proceeds from a number of different events into the total and came up with a whopping $64,185. We can’t believe it! Thank you to everyone who has contributed to TwoTrials. Your contributions go directly to the MCCP to help children like Maddie. By the way, if you want to know more about what the MCCP does, check out their video, which is now on our page about them.

The other big news is that NBC Nightly News is going to run a profile on us tonight or tomorrow night. They were here last weekend filming a segment to air on the national news before the Trials. We don’t yet know when it will run, but we will let you know as soon as we know. In the meantime, check here to find out when NBC Nightly News runs in your area.

These steroid treatments are perhaps the hardest portion if the treatment to bear as a parent, because they make your child so very uncomfortable, tired, and generally miserable.  I suppose it was easier this time around because Emily and I could anticipate the symptoms and knew that they would pass after Maddie finished with the dexamethasone.  Still, it was agonizing to watch, particularly as we doled out the medicine morning and night that made her feel awful.  Maddie was a trooper, demonstrating a level of tenacity and grit that still amazes me.  Clearly, she got that from her mother!  I just don’t understand where she put all that food…

We are close now to the end of this part of the treatment journey, with maintenance around the corner (hopefully).  Someone asked me recently if this effort for the Trials and the fundraiser was worth it.  That question got me thinking hard about the past several months, and I am happy to say that I feel like the answer is a definite yes.  Certainly it was challenging in many ways, but I have been and continue to be so impressed with Maddie and Emily.  They have both tackled these challenges with grace, humor, humility, and tremendous determination, and I feel very fortunate to be in the same family with these two wonderful women.

I also feel fortunate to have witnessed first-hand the caring and compassion of friends, family, and even total strangers who have rolled up their collective sleeves and jumped in to help us in so many ways.  There is an Irish proverb which reads, “In the shelter of each other, the people live.” Our family has benefited enormously from what you all have provided; we have lived in your shelter.  I am hopeful that the money raised in this effort will help other families in this situation to make their journey a bit more manageable.  Thanks to one and all for your efforts!

One other note - there will be a short piece on Two Trials on the NBC Nightly News with Brian Williams. It will air this week, hopefully.  We will let you know the details when we have them.

Only 2 more days of steroids for Maddie, so my days as a short order cook will thankfully be coming to a close.  Just think how much more time I’ll have in my day and how much our grocery bill will go down!