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!

Treatment Update: Our next career option: short-order cooks

So, for those of you that have never experienced high dose steroids (and I hope not many have), here’s a view into our lives on steroids.  Maddie is currently in the thick of a 21-day stretch of high dose steroids that she takes orally twice a day.  The steroid, dexamethasone, helps to rid the body of the leukemia, but has several undesirable side effects, such as excessive hunger, labile emotions, and sleep disturbances.  This stretch is Maddie’s second lengthy period of steroids, and, when she first started the steroids, the folks at the clinic told us to expect her “to eat like a truck driver” (no offense to any truck drivers out there).  We could never have imagined what they truly meant until we went through it the first time.

Now, armed with some experience, we are better prepared to deal with the challenges of the steroids.  Just to give you a sense of this “excessive hunger”, here is what Maddie ate throughout the day on Saturday:

Before breakfast: 1 piece of banana bread, half a tuna sandwich, half a peanut butter sandwich, pretzels, and a bowl of cereal.

Breakfast: half a bagel, egg, bacon and cheese sandwich.

Between breakfast and lunch: half a quesadilla, chips with queso dip, and a hot dog.

Lunch: half a peanut butter sandwich, bowl of mac ‘n cheese, and grapes.

Between lunch and dinner: peanut butter sandwich, chips and queso dip, half a peanut butter sandwich, and sliced cheese.

Dinner: one small piece of pizza

Food cravings are also a piece of this puzzle.  During first phase of steroids, she craved lobster stew, which was getting a little pricey.  This time, luckily enough, peanut butter sandwiches are food product of choice, and we have honed our short-order cook skills to produce any other highly sought after foods, such as scrambled eggs, grilled cheese, quesadillas, and hot dogs.  You don’t want to cross a steroid crazed 4-year-old, if you know what’s good for you, so we do our best to oblige.

She tends to gain a lot of weight during this time, and, as the days progress, she becomes increasingly uncomfortable.  Her belly is distended and she looks like she is about 9 months pregnant.  Her sleep is erratic, a side effect of the steroid and the fact that she is constantly hungry.  She’s up several times in the night, sometimes to eat and sometimes just because she cannot sleep.  She gets easily frustrated, too, during this time by the simplest thing that usually would cause her to say “it’s no big deal.”

Sounds like fun, huh?  It’s completely heart-breaking to see her go through this time and we do our best to support her with patience and love.  We are encouraged by her positive spirit even in light of her struggles with the medicine.  We are bolstered by the fact that we only have 7 more days of steroids; we figure we can do anything for 7 days.  This is not the way I originally envisioned my taper toward the Olympic Trials, but we gotta play with the cards we’ve been dealt, right?

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Training Log: February 8th, 2008

CommentsEasy afternoon jaunt.  It was a bit of a stressful day, and I found myself worrying throughout most of the run (see today’s treatment log).  I did, however, get a chuckle out of our crazy sheep.  You see, my treadmill looks out on the pasture that our sheep are in for the winter (at least until it’s time for lambing in a few weeks).  First of all, I think it’s hilarious that the sheep are not very adventurous in the snow.  Typically, one bold sheep (or perhaps a bold farmer) makes a path through the snow to the hay rack.  Once the path is made they don’t venture off it (ever)!  Usually, at about 3pm each day, they journey from the hay rack area to the gate from where they know the food source (aka the farmer) will be coming.  So, each afternoon I see them line up nose to butt in a single file line up to the gate.  Then, when one of the farm crew brings out the hay, they scurry (in their single file line) to the hay rack jockeying for the best position.  You’d think at least one might just hang out at the hay rack and stake claim to the optimal position, but I guess that’s why they are sheep.  At least they provide me with some entertainment.

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Treatment Update: Daisy’s on vacation!

I guess even therapy dogs get a break every now and then. When we showed up at clinic today, Maddie ran up to the reception desk to greet Daisy. Her familiar crate and Santa chew toy were there, but we soon learned that Daisy was on vacation. I had visions of that curly labradoodle sipping an umbrella drink on some sunny beach somewhere, and I thought it didn’t sound half bad. Smart dog, escaping the cold Maine winter for some much deserved R & R.

Maddie took Daisy’s absence well; she quickly followed Lauren in for her check of vitals and then to our treatment room. As we were about to enter the yellow room, Maddie exclaimed, “Oh I forgot my beaded journey!” Yes, indeed, we had forgotten to bring her growing strand of beads that represents her journey through her treatment. “No big deal!” she continued. “We’ll bring it next time.” We chatted with Liz, our social worker, and Bambi, our nurse. Dr. Eric came in to assess Maddie and see how the last couple of weeks have been going. My biggest concerns have been related to disturbed sleep patterns, some leg pain, and eating issues. So, we worked on tackling those issues. Maddie was due for 2 intramuscular injections of a chemotherapy medication called PEG-Asparaginase. She’s had this injection several times previously and we talked about the “stick” before coming today. She said she was scared, but said she would be “brave”. I had put a copious amount (in other words – way too much) of EMLA cream on her legs where she would get the injections, and Bambi and Jay administered the medication with ease. Maddie was “brave” and I was proud of her. We had to hang around the clinic for 30 minutes after the injection to observe for any possible allergic reaction. Maddie pulled a rolling toy around the clinic making enough noise to disturb anyone who was working, but everyone dealt graciously with the ruckus. She was excited on the drive home to tell her Daddy how well she did at the clinic today.

When we arrived home, we received the latest update from the MCCP Development Office about the fundraiser. We’ve already raised over $13,700. Way to go Two Trials and all of its amazing supporters! Step by step we will reach all of our goals.

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Treatment Update: Beginning the Interim Maintenance Phase

This week, Maddie began the third phase of her treatment for Leukemia. We have completed the induction phase (28 days) and the consolidation phase (28 days). Now we embark on the interim maintenance phase, which lasts 50 days. This phase does not incorporate any new medications from the previous two phases, but the frequency and route of some of the medications does vary. The standard medications for this phase are vincristine (IV), dexamethasone (the dreaded steroid) (by mouth at 2 separate 5 day intervals), mercaptopurine (a.k.a 6MP) (by mouth every day), and methotrexate (by mouth and intrathecally).

On Monday, we went to the clinic in Scarborough where most of Maddie’s treatment takes place. When she requires a lumbar puncture (spinal tap) or another procedure that requires anesthesia, we go to Maine Med. in Portland. We traveled through a great snow storm which left us with a foot a fluffy, soft snow. Once we arrived at the clinic, we were greeted by lots of smiling faces, especially the smiling face of Daisy, the therapy dog at the clinic. Daisy is a labradoodle. I had never seen one before I met Daisy. She’s a cutey; she’s tall and has white, soft, curly fur. Maddie absolutely adores Daisy. In fact, early on in her treatment, Maddie was very nervous about going to the clinic and the prospect of playing with Daisy was the only way we could get Maddie to go inside. A couple of times Daisy even got on the scale to show Maddie that it was not scary. Maddie gave Daisy a squeaky Santa chew toy for Christmas, and it was fun to see that it is still among Daisy’s stuff behind the desk at the clinic.

The waiting area at the clinic is full of toy and playthings for kids of all ages. Maddie particularly likes the kitchen.

She has quickly become very familiar with the folks at the clinic, the procedures, and the routine. She has a favorite treatment room – the purple room with the kitchen. All the rooms are very kids friendly. A family recently donated brand new flat screen TVs, and most of the rooms have a Playstation or XBox or one of those type of video game machines. Many of the rooms have beds as well as the standard treatment stretcher. Sometimes, when kids come to the clinic, they have to stay awhile either to receive an IV medication or a blood transfusion, so effort is made to make sure they are comfortable. Coloring books and reading books are also available to help entertain the kids.

This week, Maddie was receiving IV chemo through her port. So, on the way down to Portland, I stopped to apply the EMLA cream on her port. EMLA is a lidocaine based cream that helps numb an area of skin; thus, when the port is accessed with a needle, there is little to no pain. At the clinic, we are always greeted by one of the Social Workers. Liz is the Social Worker we work with on most visits. The Social Workers are such a valuable part of the treatment team at the clinic. They provide the families with support services, such as parent phone support groups and dinner support groups. They let the families know about special events or programs, such as the Shawnee Peak family season ski pass that is available free of cost to every family at the clinic. They help the kids create their “Beaded Journey” which is a wonderful collection of strung beads each representing a step in their journey through cancer treatment. They help provide distraction, like blowing bubbles, during procedures. Probably most important, the social workers just come in and chat with us as a family to help us manage this journey.

We also always meet with one of the nurses to discuss how our day-to-day management is going and discuss any concerns. We usually work with Bambi, but Jay and Cyndi have also helped us out during our visits.

Dr. Larsen is our primary physician, and he assessed Maddie and generally visited with us about how things are going. We also talked a bit of runner talk as he is a runner himself. Generally, I feel like Maddie is doing well, but I did chat with him about her occasional nausea/vomiting, the chemo having altered the way things taste to her, and intermittent leg pain.

After Maddie received her chemo, she got to visit the “Owee” box which is filled with little toys for the kids to choose from after a procedure. I chatted with Bambi about our treatment and medication schedule for the upcoming month and she gave me two of Maddie’s oral chemo medications to take home. Then, after a goddbye to Daisy and the rest of the crew, we were off to brave the snow storm.

I continue to be amazed and impressed by Maddie’s ability to cope with all that we are asking of her physically, mentally, and emotionally during this time. She’s a strong, positive, joyful kid who helps make this challenge more manageable.

She will continue to take a variety of oral medications daily until our next visit to the clinic.

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