Treatment Update: Done!

The last week has been one of celebrations. Last Wednesday (January 13th), Maddie had her last chemotherapy infusion and lumbar puncture. Five days of oral medications followed, and on January 18th, Maddie’s 6th birthday, she officially completed her treatment for leukemia. Sandwiched in between the final infusion and the last of the oral chemo meds was a wonderful party to celebrate her birthday and the significant accomplishment of reaching the finish line of this arduous 26-month journey. Maddie’s new best buddy, our Percheron Draft Horse named Pete, took kids and adults on sleigh rides, while others flew down our sledding hill. “Princess” chocolate cupcakes, apple cider and balloons greeted us in the house after our playtime in the snow. When I think back to November 2007, I had no idea what “the end” was going to be; now that we are at the end, I can confidently say it couldn’t have been scripted any better. We feel incredibly fortunate to have a healthy, thriving little girl. While our road has not been easy, we are cognizant of the fact that many in similar situations face many more obstacles and complications during their journey through treatment. There are not always cupcakes and balloons at the finish line. Maddie is just as aware of that fact as we are; she said to me yesterday that she would like to make a donation to both her hospitals to help those kids that have to stay in the hospital.

This morning, Maddie enjoyed throwing all of her pill bottles into the trash. Oh, the sweet sound of mercaptopurine, methotrexate, dexamethasone, and prevacid hitting the bottom of the trash can and gone now from our daily routine! As we got home tonight from dinner, I said to Maddie in part out of habit and in part jokingly,”Ok, time for your meds.” She looked up at me with a big smile and said,”No, you silly, I don’t have to do that anymore.”

She will have a surgical procedure in February to remove her port (the subcutaneous venous access device through which she has been receiving her chemotherapy infusions). Maddie is looking forward to its removal. I think for all of us the port (although not noticeable to many unless you know it’s there) is a physical reminder of this journey, and we’re at a point where we’re ready to move on. Not to mention that for health reasons it’s beneficial to have it removed as soon as possible. Additionally, she will continue to be monitored closely for several years by her oncologists to ensure that the cancer does not return.

On a bit of a lighter note, I wanted to share some fun facts about our journey over the last fews years that may help put this experience in perspective. Now remember that I was not a math major during my college days, so all numbers were calculated to the best of my ability.

1. Amount of Bactrim (prophylactic liquid antibiotic) consumed : 4,362ml. 1 gallon is 3,785ml. Bottoms up!

2. Doses of oral meds (crushed in Hershey’s chocolate syrup or Hershey’s strawberry syrup, which looks disgusting but was our savior over the last couple of months) : Mercaptopurine – 800 doses. Dexamethasone – 302 doses. Methotrexate – 105 doses.

3. Numbers of days spent as in-patient in the hospital – 10 (all during her initial hospitalization).

4. Number of trips to the ER – 3

5. Number of times her port clotted requiring instilling a clot buster – 3

6. Number of months her arm was purple after her initial blood transfusion infiltrated in her arm – 4

7. Number of times Maddie asked “why me?” during the last 26 months – 0

8. Number of amazing people that helped us along the way – Too many to count!

We want to thank each and every one of you that has supported us and other families through this marathon. While we may never know why certain things happen in life, it has been abundantly clear to us throughout the last 2+ years that as individuals and as groups we have the ability to take a whole bunch of crummy lemons and turn them into the finest lemonade around.

Treatment Update: Hitting the wall…

It’s been a while since our last update.  Sorry for that; the summer and all its craziness has made time move all too fast.Of late, we’ve begun to feel like we are hitting the wall in terms of this whole treatment thing.  ”Hitting the wall” is an expression that marathoners know all too well.  In physiological terms, it is the point in the race when your body runs out of glycogen (the body’s stored form of energy) and the body must switch from aerobic metabolism to anaerobic metabolism.  Not an efficient switch for someone trying to crank through the last few miles of a race.  In a physical sense, “hitting the wall” in a marathon is the point in the race, usually around miles 18-20, when you begin to feel like your legs are filled with lead and your sleek, light racing shoes turn into concrete blocks.  You feel like you are running through quick sand and that you are pulling a semi-truck.  Mentally, your demons begin to fill your head with doubts about your ability to take your next step let alone to reach the finishing line feeling strong.  This is where the marathon becomes a supreme mental challenge.  This is the point at which you must believe in yourself, your training, and the countless hours you’ve dedicated toward getting to this stage.I feel like we have reached that point in Maddie’s treatment.  We are only 5 months away from the finish line.  If we compare that to a marathon, we would be at about mile 21 or 22, the perfect place to “hit the wall”.   A couple of months ago, Maddie and I were driving in the car and out of the blue she said to me,”Will I be asleep when they take it out?”  As several seconds of quiet ticked away, I quickly tried to figure out what “it” was.  Then, it hit me; she was wondering about her port.  Would she be asleep when her port was removed from her chest?  I replied,”Yes, you’ll probably be given some propofol, so you go to sleep and it will be removed while you are asleep.”  She thought about my reply for a moment and then said,”But how will they take it out if they use it to make me go to sleep?”  Not having much OR experience, I wasn’t entirely sure, but I guessed, “I bet they will put an IV into your arm while you’re asleep and then take the port out.”  She thought about that for a moment and said,”OK.”  Then a moment later, I heard these deep, sorrowful sobs from the backseat.  It wasn’t the cry of a child who had just injured herself; rather it was a mournful sob that you might expect from an adult.  It certainly got my attention causing me to nearly drive off the road.  I asked her what was wrong and she replied,”I just don’t want to do this anymore.”  Flustered, I wasn’t sure how to respond.  Yes, I wanted to sob, too, and tell her I didn’t want to do this anymore either.  And I did.  I told her that I was tired of it, too, and given the choice I would rather not do this anymore.  But then we talked about how we don’t have a choice.  I told her that the medicine, blood draws and all the procedures are ultimately going to her better and get rid of all the cancer.  All this was information she already knew, but I think it was helpful for her to be able to express her frustration and have it acknowledged.   Brad and I have forced Maddie (for better or worse) to incorporate her treatment into our regular daily routine.  We tend to not dwell on how much it sucks, because we don’t see that attitude as helping us through this long journey.  But every once in a while, just like I did at mile 21 of the NYC marathon in 2004, it’s OK to WANT to be done.  What is also important and most difficult, is that during those low, dark moments, you pick yourself up and will yourself to the finish line.  I made it to the finish of that NYC marathon, not in a personal best time, but with the satisfaction of working through the challenges both physical and mental and persevering to the end.Our dark moments are not plentiful.  When they do come, we face our fears head on, recognize how far we’ve come, and believe that we can do it. The effect of Maddie’s treatment is hardly visibly physically; she has a full head of very curly brown hair, enough energy to keep Brad and me running, and has just started kindergarten.  Like a marathon, however, this journey has become a supreme mental challenge.  We now have our eyes on the prize –  January of 2010 and Maddie’s finish line.

Treatment Update: Light at the end of the tunnel and a request for help…

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 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!

Treatment Update: Maddie plays with Diego

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!

Treatment Update: Maddie turns five

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?”

Treatment Update: Days with my Four Year-Old…

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!

Treatment Update: One year has come and gone

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.

Treatment Update: Fun at the Common Ground Fair

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.

Treatment Update: First Lumbar Puncture at DHMC

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!