Two Trials

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.

I did not run one mile this week, and I did not have to endure any chemo either.  As husband and father, my role over the past weeks has been largely behind the scenes.  This week, as the Trials draw near and Maddie finished her 21-day course of steroids, I decided it was time to log in and add some thoughts from my perspective.

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

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

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

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

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?

Yesterday, as Maddie and I got out of the car and went inside to have lunch, here’s a synopsis of how she described what our afternoon would entail, “So, first we’ll put the cream on.” (Lidocaine-based EMLA cream that we put on her chest where her port is before accessing it.  We usually leave it on for about 45 minutes.)   “We’ll have lunch and then put tubey in.”  (Accessing her port by inserting a 3/4″ Huber needle which is attached to IV tubing into her port.)  “We’ll go to clinic.  I’ll get to see Daisy.  I’ll get medicine through my tubey.  I’ll be very brave, and you’ll be with me the whole time.  Then we’ll take the sticky part off and take tubey out.  I might get a sticker or something from the ‘ouwey’ box.”  (She got IV vincristine and doxyrubicin through her tubey.  The sticky part is the Tegaderm tape that we use to secure the “tubey”.  She hates it when we take the Tegaderm off.  In fact, removing the tape is the most stressful part of the entire experience for her.  The clinic has a box of little toys from which the kids can select something after treatment.)  “Then, we’ll get to go get a snack - maybe a grilled cheese, doughnut or a bagel.”  (That’s the steroids talking.  Food is always at the forefront of her mind these days.)

I’m constantly amazed by how articulate Maddie can be about her treatment.  This dialogue enables her to process exactly what is going to happen before she goes to clinic; she can work though it in her mind and we can talk about any parts that are worrying her.  The familiarity and understanding of everything that will happen makes the entire experience less daunting for her.

On the way home, she was completely focused on the grilled cheese.  I was bumming that there was no drive-thru grilled cheese restaurant as it was already 5:30pm and I wanted to get home; at the same time, I wasn’t about to deny her a grilled cheese after she had an afternoon of chemotherapy.   By the time we got to Brunswick, however, she was vacillating between a doughnut and a bagel with cream cheese.  She finally opted for the glazed doughnut, which she devoured in a few bites.

So far (knock on wood, cross your fingers), our 21-day stretch of steroids has gone well.  Maddie’s spirits are good, energy is high, and sleep is actually fairly normal.  Her appetite has increased and she talks about her next meal immediately after finishing the previous one, but at least we’re not having to use our skills as short order cooks at various intervals throughout the night.  We are still preparing ourselves for Maddie to turn into the steroid crazed child that we saw in December, emotionally labile and with an appetite like “a truck driver.”  The effects of the steroids tend to be cumulative, so I suppose you could say that the worst is yet to come!  We joked yesterday that the timing sure is great (not!) as these are the last few weeks leading up to the Trials.  We feel like we’re entering the final stage of some cruel test.  (It’s the “can you make it to the starting line of the Olympic Trials and care for a child on high dose steroids and a handful of chemotherapy drugs” test?  It’s not a test I ever envisioned myself signing up for.)  As optimists, however, we can see the light at the end of the tunnel - only 14 more days of steroids and 19 days until the Trials.

Maddie’s chemothereapy vacation ended today. It’s with a combination of dread and anticipation that we greet the day today. We drew Maddie’s blood yesterday afternoon after we returned from Forida. The call came in this morning that, indeed, after three weeks of trying she had finally made her counts, so treatment could resume. I kept telling myself all day that this was a good thing, as it would get us closer to the ultimate finish line, but I will readily admit that I have enjoyed this break on our leukemia treatment marathon. No meds for 3 weeks reminded us of what life was like before the diagnosis; Maddie was engaged and energetic, she slept well, her moods were less erratic and more predictable, and, most striking to us, she could not have been picked out of a crowd as the sick kid.

Also, delayed intensification has loomed in our minds as a daunting 6-week period. The steroid, dexamethasone, rears its ugly head in high doses for three weeks. Brad and I now become short order cooks at all hours of the day and night and develop endless patience as we deal with an emotionally labile child. Truth be told, we struggled with the intial 28-day steroid phase, so we begin this phase with some trepidation, but also having learned some lessons from round 1.

Delayed Intensification brings other medications that Maddie has had before, such as vincristine (IV) and methotrexate (intrathecally), and PEG Asparaginase (IM). It also brings several new medications, such as Doxorubicin, Cyclophosphamide, and Thioguanine. In addition to the side effects of the medications she’s had before, she may experience some new ones as well.

Today, we “put tubey in” at 9am and headed off to Maine Med for her lumbar puncture. Maddie has become a pro at this routine in a short amount of time. Last night, we talked about the LP and the fact that she couldn’t eat or drink before the test. I’m always amazed by the way in which she deals with it. Her LP wasn’t until 11:30am and, while she said she was hungry or thirsty several times, she never threw a fit. I wanted to throw fit; I was hungry, too. Instead, with much anticipation, we planned what we would have after the test; she wanted either a bagel with cream cheese or a grilled cheese and french fries. We wheeled her into the procedure room without a peep; she held onto her blanket and had her baby next to her. As I talked with her about what we would eat afterward, the anesthesiologist put the propofol through her port and she was off to sleep.

The LP went well and without complications. At the café, she opted for the grilled cheese with french fries. Our next stop was clinic where she was due for IV vincristine and IV doxorubicin. Maddie visited with Daisy briefly, although Daisy seemed a bit sheepish due to a bad hair day. We talked with Bambi, Liz and Dr. Eric. We hadn’t been to clinic in a few weeks, so it was nice to check in with the folks there. Maddie added a few beads to her beaded journey, and then she received her meds. After taking “tubey” out, we were done.

She’s due back on Thursday for 2 intramuscular injections of PEG Asparaginase. Maddie hates the PEG injections, but we’ve been talking about the shots and she’s not so fearful of them anymore. I think our open, honest communication with her has really served her and us well throughout this entire experience.

One funny note about today’s clinic experience…one of the side effects of doxorubicin is that it can turn your pee pink. I guess it usually last for about 48 hours after the treatment. So, tonight when Maddie went to go pee, I told her that her pee might be pink and that she shouldn’t be worried if it is. She absolutely died laughing. She thought it was hilarious that her pee would be pink (it is her favorite color, you know). Just picture this, she’s sitting on the toilet looking down with anticipation to see what color her pee would be. To her disappointment, it was just regular pee color. I tried to temper her disappointment with the news that perhaps next time she peed it would be pink!

We “put tubey in” yesterday to draw Maddie’s blood.  It was a more challenging blood draw than usual.  She was nervous and hesitant to do it.  She was missing her dad who usually sits with her while I access the port.  My mom was here to help us work through it, and we managed to draw the blood without problems.  Mads immediately grabbed the yellow and purple tube, and we headed off to the lab at the hospital.  She was proud to be in charge of holding the tubes all the way to the hospital.

When we arrived, she went right in and found Maria who gave her some stickers.  Then, she trooped off to the lab, got her order form, and handed both the form and the tubes to the folks working in the lab.  She loves being in charge of this process and she already knows the drill.  Then, we had to stop by the ED to say hi to everyone there and, of course, get more stickers.

Since we finished 2 oral chemo medications on Monday morning, we have seen the “old” Maddie the last few days; she is energetic, sleeping well, joyful, engaged, and “on to go”.  We were due to start up a new phase, called Delayed Intensification on Monday, so these last few days have been such a treat.

Early in the afternoon, I got a call from the clinic saying that Maddie’s treatment and beginning of Delayed Intensification would have to be put off due to low blood counts.  Her WBC count is 1.7 and her ANC is 289.  She needs to have an ANC over 750 to continue treatment, so it looks like see doesn’t have enough little soldiers on board in her immune system to do much fighting.  It’s hard to say what’s caused the dip; it could be some of the medications themselves, an ear infection that she had been fighting, or something else.

So, we play the waiting game.  She’ll have no medications this week with the hopes of allowing her blood values rise to a level high enough for treatment.  We’ll “put tubey in” on Friday and draw blood again.  And hopefully, we’ll get results that will allow us to keep moving ahead.

We are enjoying seeing her feel so good these last couple of days.  She’s been acting just like any other little kid.  So, part of us doesn’t mind a little mini break in treatment, because we anticipate Delayed Intensification being a challenging 6 week stretch of her treatment.

Yesterday, Maddie was able to continue her treatment; her blood levels had stabilized from the dip last week.  Maddie was scheduled for a lumbar puncture (LP) at 10am at Maine Med.  The LP requires that she be NPO (nothing by mouth) after midnight on the day of the procedure.  Maddie has had several (5-6) of these LPs; she knows the drill.  The night before the procedure, we talked about the test and not being about to eat until afterward.  We usually dream about what we are going to have afterwards and it commonly includes french fries and ketchup.

At around 3am, she woke up sick to her stomach and vomited in her bed.  Brad and I quickly whisked her up, threw her in the bath, changed her clothes, and put new sheets on the bed.  Fortunately, she was able to fall back to sleep; however, she awoke in the morning feeling lethargic and still a bit nauseated.

We needed to “put tubey in” before we left, as she tends to do better if Brad and I access her port, instead of having someone she not familiar with at the hospital do it.  You see, when we go for LPs, we go to the Day Surgery Unit of Maine Med, so we often see different nurses and anesthesiologists each time.  One of the doctors or Chris, the nurse practitioner, from the Maine Children’s Cancer Program always perform the LP, which helps make Maddie feel more comfortable.

She slept the entire way to the hospital, only waking when I turned the satellite radio from the kids station to the Big 80s.  At the hospital, Dora couldn’t even raise her spirits; I knew she was feeling pretty crummy.  Chris and I talked about how she was doing, her stable lab values, and we ultimately decided to go ahead with the procedure.

The purpose of the LP is twofold; a sample of the cerebro-spinal fluid (csf) is removed and analyzed for the presence of “blast” cells, and she receives chemotherapy (methotrexate) through the LP into the csf.

She awoke very thirsty in the recovery room with Chris, Mary (her nurse), and me by her side.  She chugged down lots of water, but was still a bit nauseated.  We decided to give another anti-emetic (aka - anti-vomit medicine) before we hit the road.  She did want to stop by the cafe for something to eat, but, when her cheeseburger and french fries arrived, she didn’t touch it.  We packaged up the cheeseburger and I stuck it in my bag; I was just imagining how tasty that would be several hours down the road (yuck!).  When we got to the clinic, Daisy’s radar drew her right toward the bag and the cheeseburger.  Before I knew it her face was nuzzling open my bag. We managed, however, to stop her before she ate my bag and the cheeseburger.  Maddie perked up as she got to feed Daisy a few treats.

“Finding Nemo” was Maddie’s movie request du jour, and she slowly perked up as the movie went along.  While we were meeting with Dr. Rossi or Jay, she would interject, “Oh, watch, this where Nemo gets caught in the net” or some other movie play-by-play.  Maddie received chemotherapy (vincristine) through her port, and Jay gave us our new supply of oral chemo meds (methotrexate and 6MP) and our schedule for the next several weeks.  It was a long day, but ultimately we were glad that Maddie got a good report and that her spirits had risen as the day wore on.

This morning, I “put tubey in” and drew Maddie’s blood.  Since Brad was out of town at a horse logging extravaganza, we asked Abby and Margaret (thanks!) to hang out with us during the procedure.  Maddie did great.  We headed off to the hospital, and Maddie marched in and handed her blood tubes to our friends in the lab.  On the way out, she procured a collection of stickers both from the lab and the registration desk.  I promptly found my jeans covered with images of Dora, Diego, and other assorted cartoon characters.  A couple hours later, we got a call from the clinic saying that Maddie’s scheduled lumbar puncture and chemotherapy treatment for Monday would have to be pushed back, as some of her blood counts were too low to proceed with further treatment.  It seems that the cold and cough that she has been battling has dropped her white blood cell values, and it’s amazing how quickly it can happen.  On Monday, when we were at the clinic, her white blood cell count was 3.5, which was the highest it had been since her diagnosis, and her absolute neutrophil count (ANC - the true measure of a person’s infection finghting ability) was 3050, which was the highest value since her diagnosis.  Well, today her WBC was 1.6; it hasn’t been this low since late November.  Her ANC was 416.  In order to proceed with treatment, her ANC must be over 750.  Cyndi, one of the nurses at the clinic, compares the ANC to the “little soldiers” that actually fight off the infection; Maddie must have used up most of her “little soldiers” fighting off that cough and cold.  Now, we play a bit of a waiting game.  We’ll redraw blood on Tuesday or Wednesday and see if the number of “little soldiers” has increased.  I was struck today by how smoothly I felt we were cruising along and how quickly roadblocks can appear.  The next few days concern me as I know she is so susceptible to illness, has little ability to fight things off, and any infection would lead to a hospitalization.  So, we’ll remain vigilant and optimistic that those “little soldiers” will respond.

Some days when I wake up, I’m just never sure where I might end up at the end of the day. Luckily, today in the end, we ended up at home looking forward to sleeping in our own cozy beds. Maddie has been a little sick (aside from the whole leukemia thing) since last Wednesday with a cough and some cold symptoms, but no fever. After a call to the clinic on Friday, we decided to watch and wait to see how things progressed. As you can probably imagine, fever and infection for someone in an immunocompromised state are not a good thing. She had an OK weekend, but the cough and cold symptoms have persisted. Today, she awoke lethargic and feeling worse. We kept her home from school, and, when I took her temperature, the number 101.9 blinked from the thermometer. A quick call to the clinic confirmed that the outlook for our day had now changed. We were to scurry down to the clinic for blood cultures, CBC, type and cross, and IV antibiotic (Rocephin). Jay advised us that it could be a quick trip or, if her blood values were low, a stay in the hospital could be in the cards for us. So, as Maddie dictated which treasures she wanted to bring with her, I threw together an overnight bag just in case we ended up in the hospital. “Why are you bringing your running stuff, Mommy?”, Maddie queried. “Wishful thinking,” I thought to myself. I figured that if we ended up in the hospital, I might be able to squeeze in a run around the Back Cove or something. I had decided earlier in the day that I would do my easy run of the day in the afternoon, as I had felt pretty tired this morning after minimal sleep last night. Our trip to the clinic changed that plan, but that’s why I run by a flexible schedule these days. Maddie slept all the way to the clinic, and could only muster up a brief hello to Daisy, who had just come back from vacation. As Daisy laid sprawled out on the floor dozing away, I thought she looked like she was still on vacation. They have a swift fever protocol at the clinic for the kids with leukemia; fevers and infections are not something to be taken lightly. Immediately, when we stepped into the purple room (Maddie’s favorite room, by the way; it has a play kitchen), Nancy and Dr. Eric were in to tend to Maddie. Maddie did great as Nancy “put tubey in”, drew her blood, and hooked up the IV antibiotic. Once again, she was brave, and proud to tell her daddy all about it when she got home. She also had a chest x-ray, which, along with the blood work, were all reassuring. After having looked at all the test results, Dr. Eric concluded that we didn’t have to make a trip to the hospital, but he let us know that we shouldn’t hesitate to call the clinic if anything were to change throughout the night. Maddie and I were both glad to know that we would, indeed, make it home for the night. Before Maddie fell asleep on the way home, we talked about the fact that tomorrow she had music class at school. She commented that she hoped she felt like going to school tomorrow, as Miss Sharon’s music class is one of the highlights of school for her. As I looked back at her as she slept with her head in some funky, contorted position, I hoped so too. So, we’ll see where we end up tomorrow…