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.

It seems as though much of what we face with Maddie’s treatment has become quite routine.  We are certainly glad to have our hospital visits become less frequent, and we are still getting accustomed to some of the process with Dartmouth Hitchcock, but overall much of the journey at this point is on cruise control.  We are enormously thankful that we have been fortunate enough to avoid any extenuating complications or difficulties with the course of treatment.  Maddie continues to move ahead with perseverance and tenacity, and, sometimes, with humor that is beyond her for the moment.  Recently she and Emily sat down to practice her writing, and Maddie asked if they could spell out all her medications.  I don’t know many other five year olds who ask to practice spelling methotrexate and mercaptopurine.  Maddie feels great and her hair has come back with curls much like her mom.  Most folks who meet her do not know that she has been sick, which is wonderful for us all.  Perhaps the toughest part of the current routine for our family is taking the oral medications every night. We often find ourselves thinking wistfully towards a future without daily mercaptopurine, dexamethasone, prevacid, etc.  By January 2010, barring any set-backs, we will complete the course of treatment and turn the page on this chapter of our lives.  All three of us are very eager to have an evening where we do not have to ask Maddie to choke down pills crushed in chocolate syrup.  We play all sorts of little games to convince her to take part, and, regretably, we sometimes have to take away a favorite toy or blanket until she takes the med.  Maddie always rises to the challenge, but sometimes it is not much fun.  We continue to receive excellent treatment from the kind folks at the Norris Cotton Cancer Center at Dartmouth Hitchcock.   Maddie now calls it “my hospital” when she hears radio spots for the hospital.  As we did in Maine, we are hoping  to give back to the people at the hospital that have done so much for us.  On July 11, we will be taking part in the 2009 Prouty, a major fundraiser for the cancer center.  Emily and Maddie will walk in the 5K walk, and I will ride in the 100 mile bike ride.  We are hoping to raise what we can to support the work of the center.  We would ask those who are willing to make a contribution on our behalf to do so by going to www.TheProuty.org and click on Sponsor Participant.  Simply enter Brad Johnson, Emily LeVan, or Madeline Johnson, and you will be on the way towards helping us with our goal.  Thanks in advance!  

After Maddie’s treatment today, we asked her what she’d like everyone that follows her journey to know.  She thought long and hard about the question as she ate her yogurt and PB&J sandwich at the Panera Bread in Lebanon, NH not far from Dartmouth-Hitchcock Medical Center (or “my hospital” as she calls it).  The first thing she wanted everyone to know is how much she misses family members, hundreds and even thousands of miles away in different parts of the country, and friends, especially those that we haven’t seen much of since we left Maine.  In addition, to the humans that she misses, she’s always quick to remind us that she dearly misses Sal and Braego, the horses at the Chewonki Farm.  Her most frequent question  to us is, “When are we going to get our horse?”  While a horse or horses is/are on our radar, its arrival is not soon enough for our little five-year-old.  It is reassuring to hear the topic of her greatest concern be about the arrival of a horse and not her on-going leukemia treatment.Thankfully, Maddie’s treatment has become somewhat of a side-note in our daily lives.  For the most part, our family’s  little cancer killing machine continues to chug along full speed ahead.  Maddie’s had a few linger colds and fevers this spring, but her blood counts have remained high indicating that her immune system is strong enough to ultimately fight off any bugs.  We had one unexpected ER visit and one unanticipated blood draw; even considering those blips on the radar screen, treatment has continued without interruption.  Yes, we still battle from day to day getting her to take her meds in the evening when she is very tired, but we have developed strategies to get the meds down without too much consternation.  And on a monthly basis, Maddie regularly chimes in with, ” I love my hospital.  I love going to treatment.”  So I guess in a lot of ways, we’ve got it pretty good.  Not that I’m psyched about the whole cancer thing, but when you really get down to it, things could be a lot worse.  So, we continue to keep our eye on the “prize” - January of 2010 - when Maddie’s treatment is scheduled to finish, and all indications are that that will indeed be the case.Maddie also wanted to let everyone that we’ve added a new calf to our clan of animals.  I think she’s planning to name him Diego, and she enjoyed bottle feeding him and running around with the red and white little Ayrshire.  He will be joined by 10 pigs, 2 lambs, another calf, 300 chickens and 15 turkeys during the spring and summer.  Wow!  Sounds like it’s going to be a busy time.  Good thing Maddie’s got enough energy for all three of us!   

We celebrated Maddie’s 5th birthday on Sunday surrounded by friends and family at our cozy, snow-covered farm in Vermont.  ”Blissful chaos” is how I would describe the scene.  We had snow forts and sledding outside, while inside the house was buzzing with little girls playing dress-up (thank you, Nana and Cindy, for all those great costumes) and trains being built on the dining room floor.  Thirteen little kids can make a lot of noise and a big mess, and Maddie was leading the charge.  All the while, I was thinking to myself how happy I was to hear all that noise and see the messes being made.  That’s what kids do, and it was great to see Maddie being a regular kid.  We had a party last year when Maddie turned four.  Our great friends at Chewonki put on an amazing puppet show for Maddie and some friends (thanks, Lauren!), but Maddie felt so crummy that she sat in my lap most of the time sucking her thumb.  This year’s experience was how I envisioned a kid’s party should be.  Of late, Brad and I are continually grateful for Maddie’s good health.  We joke that aside from the leukemia, she’s an incredibly healthy kid.  And frankly she doesn’t let this leukemia thing slow her down anymore.  While we consider our family “a well-oiled cancer killing machine”, we are occasionally brought back to the reality that this is still a monumental task that we are tackling and our fortunes can turn on a dime.  For example, Maddie recently had to take a chemo “holiday” because her blood counts (specifically her absolute neutrophil count) were dangerously low.  During that time, she was at higher risk for developing infections that would land her immediately in the hospital.  Fortunately, the chemo “holiday” enabled her counts to rise and she didn’t get sick during that time where she had little ability to fight off any bugs.  We secretly appreciated the break from the daily medication regimen, but at the same time hoped that her counts would quickly rise back up.  It is a delicate balancing act; we give her enough medicine to keep any cancer cells knocked out, but not too much to knock Maddie out.  Generally, we find this phase of the treatment to be much more predictable and consistent than the first several phases.  Since the medicines are the same from day to day and month to month, Maddie’s physical response to them is pretty much the same on a daily basis.  That’s not to say that she and we do not have little struggles.  She is bothered by canker sores in her mouth and rashes on her face and chest (side effects of the chemo meds).  Her enthusiasm for taking her nightly meds waxes and wanes in no sort of predictable way.  But even considering these little struggles, we consider ourselves incredibly fortunate that Maddie is doing so well physically and emotionally through this journey.  Overall, her prognosis is very good and we have even started to look forward to her 6th birthday next January when we hope to be finishing her treatment.  I doubt that we will ever say “good-bye” completely to cancer; it will always be a part of our lives.  The possibility of its recurrence will always linger in the back of my mind, but I look forward to the day when it becomes an even smaller piece of our daily lives.I just want to leave you with a few quotations from Maddie.  Sometimes looking at life from a kid’s point of view can help us put our own lives in perspective….Once a month Maddie goes to school on the day before her treatment with her port accessed, and inevitably kids ask her about the tube that is taped onto her chest.  I asked her what she tells the kids when they ask about it.  She said, “Oh, I just tell them it’s my tubey because I have cancer.”  Yep, that’s right, that’s Little Miss No-Big-Deal talking. I had a doctor’s appointment last week to meet my new primary care physician.  Maddie came with me.  When the doctor asked me if I had any medical problems in my family, Maddie piped up immediately, “I have cancer.”  I think he was taken aback and I don’t think he believed her at first until we actually talked about her leukemia at the end of the visit.Finally, Maddie said the other day, “You know, Mom, I just love my new hospital (Dartmouth-Hitchcock), but I also really miss my old hospital and clinic (Maine Med and Maine Children’s Cancer Program).  Can we go back and visit my old hospital and clinic sometime?”     

When I was working full time at Chewonki I sometimes dreamed of staying home with Maddie and growing our own food on our own land, though it always seemed like an unlikely scenario (to say the least.)  Now Maddie and I spend most days here at home while mom works off the farm to keep us afloat.

The new schedule in our lives seems to suit us both very well, but we sure do have our fair share of battles.  For better or worse I see much of Emily and myself reflected in Maddie’s many personality quirks.  She is a chatterbox, full of energy and determination to make her way my way as well.  For the moment, Maddie’s world revolves around Maddie and little else.  Was I like this at age four?  I know at least two people who would answer with a definite “Yes!”

Needless to say I spend much of the day trying to strike a balance between pushing my own agenda and allowing Maddie to do the same with her priorities (of which there are many).  In the early days of her sickness and treatment I frequently attributed a particular behavior (particularly the not so endearing moments) to her medication, her tiredness, the side-effects of her meds and treatments–on everything except the natural tendencies of a growing four year-old.  More and more these days I see her behavior for what it is, and I am less likely to blame her sickness or her meds.  I think this realization on my part makes our time spent together less likely to end in frustration, tears, and time-outs.

Physically, Maddie is doing great.  Other than the same cold that all the kids at preschool are fighting off, she feels good.  Her hair is now long enough to put a clip in, which she loves.  It appears to be coming back in with about the same color and curl she had before she got sick.  Folks meeting her for the first time do not usually know that she is still in treatment.  That is, unless their kids play doctor with Maddie and she trys to give little Scott and Julie chemo treatments, a lumbar puncture, and a blood transfusion.  Boy have we had some funny moments with those parents we just met…

Maddie loves this time right after treatment when she knows that we don’t have to access her port for two whole weeks, and today we are waiting for a friend from Maine to come visit.  Life is good.  At the moment Maddie and Star (our one-year old Border Collie) are playing fetch in the dining room with a tennis ball.  I will hope for the best!

Today, we “celebrate” the one year anniversary of Maddie’s diagnosis, and we can’t help but be thankful for how far we’ve come.  The Maddie that is running around the house this morning hardly resembles the child that we carried into Maine Med one year ago.  Pale, scared, and listless is how I remember Maddie on that day.  Still so clear in my mind is a picture of Maddie after having her blood drawn at the hospital where I worked crying and saying,”I’m never going to your hospital again.”  A simple blood draw was only the beginning of our journey that has changed all of our lives and forced Maddie to grow up very fast.  After months on a rollercoaster of highs and lows brought on by the different phases of her treatment, we now find her physical and emotional health consistent and predictable (or as predictable as any 4-year-old).  Aside from a very short “hair-cut” (as many people unknowingly refer to it) and a vocabulary that consists of medical terminology that must adults don’t understand, you would not know all that she has been through in the last year.  She is healthy, vibrant, energetic, positive, and thriving.

She was a fairy princess for Halloween.  While last year she spent Halloween on the couch asleep because she felt so poorly, this year she trick or treated with her preschool class in the afternoon and some friends in the evening.  Also, we have recently added a canine friend to our family, who Maddie adores.  We still have a way to go before Maddie’s treatment ends, but now we find leukemia and her treatment have become less of a focal point of our daily lives.

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.