Two Trials

• We have some images from the marathon posted in the gallery. There will be more coming shortly.
• Runner’s World has an article called Emily LeVan: One Trials Down, One to Go that is definitely worth reading.
• The piece that aired last week on NBC Nightly News is available on YouTube. If you didn’t get a chance to see it when it aired, it’s really worth watching.
• We should have some new fundraising totals soon. Thanks to everyone who has made donations recently. If you haven’t yet donated to support the important work done by the Maine Children’s Cancer Program there is still some time left.

As Peter pulled away with Sal in the trailer, tears began to roll down Maddie’s face.  “When will we see Sal again?”  Maddie asked over and over, and unfortunately I had no good response.  We had just had a wonderful three day vacation at the Common Ground Country Fair at the MOFGA fairgrounds in Unity, Maine.  Sal is a drafthorse that I used to work with at the Chewonki Farm, and Maddie is quite attached to her.
Although it made my heart ache a bit to have to tell Maddie that Sal was headed back to the farm and we would not see her for awhile, it occurred to me that it was refreshing to see Maddie focused on something other than her leukemia treatment.  Now that we are only going once a month for treatment Maddie seems to have the mental space to focus on other parts of her life-interactions with schoolmates in preschool, work with me at home, hikes with Mom and Dad, camping out for the first time, and more.  In fact, Maddie made this transition weeks before, but at that moment in the parking lot of the livestock area at the fair, it struck me that as time has passed her treatment is becoming less and less prominent in her thinking.  This is not to say that we don’t still have our fare share of struggles with putting her “Tubey” in, taking her daily does of meds, fasting before her lumbar punctures, trying to help to her understand why kids at school call her a boy because of her short hair, etc., but things are settling out into a nice routine for us all.  Her sickness does not come up as often now, which, as a parent, is tremendously satisfying.

In terms of her health, Maddie’s bloodtest numbers continue to look good.  She has more than enough energy to keep us all busy, and recently we are going through one of those stages in which Emily and I see much of our own stubborness reflected in our child.  She is becoming an independent little one, and on many occaisons we find ourselves reminding her that it is not always just about Maddie.  It is a good lesson for all three of us!

We continue to feel blessed to have the support of friends and family, as well as those we have never met who write to us with words of support and encouragement.  Thanks to one and all for those gifts.

This is Dad, back for an update.  So, our journey through the world of cancer treatment continued this week with our first lumbar puncture (LP) at Dartmouth-Hitchcock Medical Center (DHMC) in Lebanon, NH, which Maddie affectionately calls “my new hospital.”  This was the first prodedure with anesthesia since we had to say goodbye to the fine folks at the day surgery unit at Maine Medical Center (where we used to get her LP’s).  As a result, we all began the morning with some degree of trepidation.  I had a solid knot in my stomach, filling the void where breakfast would normally have been.  For these procedures Maddie cannot eat after midnight the day previous, so Emily and I try to wait and eat with her after leaving the hospital.  For me, the lack of food was not the issue, rather it was the 1 in 125,000 chance that death (or the like) would occur with the anesthesia.  I am a hopeless worrier and despite the fact that the numbers are on our side and we have been through many of these before with no trouble at all, I always manage to experience a palpable sense of dread.  Maddie, on the other hand, seems to take it all in stride, concerned only with the pictures of the fish on the procedure room walls and whether or not the playroom floor cleaning would be finished in time for her to head in there.   And then there is always the planning for what she will eat when she can.

Emily, her mother, Maddie and myself received kind and professional treatment from the folks at DHMC.  In addition, they were very efficient, which is a good thing when you have a child and parents ready to attack the very first food product they encounter! The procedure went without a hitch and she awoke from the propofol-induced sleep a bit unsteady but ready for the rest of her day.  Teddy, who you may remember was accessed several weeks back and has remained so all this time, was forced to keep his port accessed, following strick instructions from Maddie.  Maddie was pleased to wake and find her “Tubey” out.  Emily had drawn her blood the day before at home and we all decided together to leave her port accessed so that we would not have to re-access the site for her LP.  That meant going to school with the “Tubey” visible to other kids in her class.  Nana (her grandmother) asked if any other kids came to school with a “Tubey” and Maddie replied that no others in her class had cancer.  “It was no big deal,” she said.

School today did not go as well, and Maddie came home at noon feeling a bit sick to her stomach and tired as well.  I am reminded at moments such as this that although she is lively and vivacious much of the time, Maddie is still in the midst of a rigorous challenge, physically and mentally.  Overall she is fairing quite well with this Maintenance phase of the treament.  She has a lot of gumption, as she deals with questions from classmates, comments about her short hair, constant medications, bouts of sickness and lack of energy, a father who worries much too much, and more.  Despite these challenges, she remains full of beans and quite the little miss full-in-charge.  Her blood numbers look good, and we are all beginning to look forward to January of 2010 when we hope to put this behind us.

Life in Vermont has been very good for us all thus far.  Emily remains very busy with work at the emergency rooms of two local hospitals and Maddie and I spend time at home trying to do a thousand projects to get the our little farm up and running.  Tune in next time for a treatment update and the annual chicken slaughter!

During the maintenance phase of Maddie’s treatment, the blood draws and IV and intrathecal chemo are  now less frequent, which we appreciate.   We are now faced, however, with making this routine manageable for Maddie.  Before her blood draw on Tuesday, she said, “I just don’t want to do this anymore.”  Neither Brad nor I blame her, especially, when in her mind, she isn’t “sick”.  She has been feeling great lately, and even though her blood counts are still quite low, she feels very few effects of the daily oral meds and monthly chemo treatments.  When have to become more creative when treatment time rolls around each month.  So, this week before we accessed her port for the blood draw and chemo, we asked her if it would be easier if we first “accessed” her teddy bear’s “port”.  She thought that would be cool; she could help Teddy through the process and help him “be brave”.  She got to put the EMLA cream over Teddy’s port and then she “put his tubey in”.  Then, she got to draw his blood.  It seemed to make the process of accessing her port as bit easier.  On Wednesday, she brought Teddy with her to clinic.  They both had “their tubey in”.  We joked that while she was going to get her chemo, called vincristine, he would get his chemo, which we called vincristabear.  As we got ready to leave for Dartmouth-Hitchcock, she grabbed Teddy and eschewed her little green Little Giraffe blanket, which she calls “little mankie”.  I was pretty blown away by the fact that she left little mankie.  She has brought little mankie to every clinic appointment and treatment since she was in the hospital for the first time in Novemeber.  She felt like she didn’t need it; Teddy was a good replacement.  Maybe the treatments are less scary for her now, and after all Teddy did need to get his vincristabear, so he couldn’t stay at home.

Our trip to Dartmouth was smooth.  Maddie was able to tell her doctor all about how she is doing and how she’s feeling.  Brad and I only piped in a few comments.  I’m still impressed by how she is able to take ownership over her illness and her treatment.  While only 4 years old, she knows a lot about managing her condition.  After meeting with her doctor, she played for a while in the playroom at the clinic making all sorts of Play-doh figures.  Then, she received her vincristine and Teddy his vincristabear.  After we de-accessed her port, she de-accessed Teddy’s.  A successful day for Maddie and Teddy; both proved to be brave little troopers!

The other day, we were reading a Stuart Little chapter book and the last paragraph of the last chapter really struck home:

“Staurt rose from the ditch, climbed into his car, and started up the road that led toward the north.  The sun was just coming up over the hills on his right.  As he peered ahead into the great land that stretched before him, the way seemed long.  But the sky was bright, and he somehow felt he was headed in the right direction.”

While our road still seems long, I feel we, too, are headed in the right direction. I feel fortunate every day that even though Maddie is still “sick”, she doesn’t consider herself “sick”.  I am so greatful every day for her health.  To see her dancing, giggling, running around, and full of energy makes me smile and appreciate where we are and how far we have come.  Those days when she felt so poorly and was so “sick” are still so fresh in my mind.  They are a constant reminder to me of how quickly life can change and just how fragile each of us can be.  I can remember vividly thinking when she was so sick that I would never take for granted those simple pleasures in life, like seeing her play at the playground or hearing the innocence of a child’s laughter.  There were many dark days, but now, even among the blood draws and chemo, we feel like our path is much brighter.

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.

After enduring weather on marathon weekend in Boston, like searing heat and a nor’easter, I think the weather gods were smiling on the BAA yesterday for the Olympic Trials.  The day dawned crisp and cool, and the temperatures remained nearly ideal for marathoners throughout the entire race.  The headwind on Memorial Drive in Cambridge was about the only bit of weather with which we had to contend.

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.

Update: We have confirmed that the segment on Emily and Maddie will air tonight, April 17th, on NBC Nightly News with Brian Williams. Look here to find out when it airs in your area. If you prefer, you will be able to watch the show streamed over the internet after 10pm ET.

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.