Friday, May 2, 2008 - Tuesday Mady has an MRI to see if there is any damage to her leg and ankle bones from the dexamethasone. That particular drug can cause osteonecrosis (bone death), and they have actually temporarily stopped the COG study Mady was on due to the number of patients who have osteonecrosis following the 2 week intensive dose of that drug during the induction phase. Dr. Friedmann mentioned that they will make some changes to the study and re-start it. The fact that they stopped the study gave me some relief. Now I know if there is a problem, they will stop and readjust.
She also has her last dose of chemo for this protocol, and then Maintenance begins. This will end the most intensive phase of her 2 1/2 year treatment.
We are hoping to hear a positive from the Hole in the Wall camp, so please keep your fingers crossed on both the state of her bones and going to camp.
And an unexpected positive just in. Her labs just came back and her platelet count is low enough that she does not have to take her Lovenox shot until Tuesday. A low platelet count equates to thinner blood. Yahoo. Love. Chris
Day 236: Delayed Intensification almost over
Day 235: Celtics game 5 Playoffs
Thursday, May 1, 2008 - WOW!!! Few things will keep a person present like courtside seats for a Celtics NBA playoffs game.
Rushing to compensate for Julia’s late soccer practice, we made record time to the Boston Garden, where we sat in the Courtside Lounge, drinking a beer and eating a quick dinner of mussels, sausages, chicken pot pie and potatoes, all with tons of garlic and onions. At about 8pm (game time 8:30), we walked to our seats.
When we approached the woman who was helping souls like us navigate the courtside seating (did I mention courtside seating??), she pointed us to two seats and told us our waitress would be right with us. (Waitress??) I told her that perhaps I had made it to heaven. She agreed, said she too had made it and she was working--it’s still heaven.
We seemed to be the first people sitting down... Then as game time approached, people arrived. Sitting on my left were some of Rajon Rondo's and Sam Cassell's families, luckily one of them competed with me for loudest mouth. On our right were the owners. I didn’t look up from watching the game. And it was fabulous. There was a point in the game when my heart was beating so fast, the noise of the crowd cacophonous, the excitement almost unbearable.
Pierce, Allen, Garnett, Perkins, Cassell, Rondo, Powe. They played beautifully, ticking off three pointers, getting inside for a few slam dunks. Pretty, pretty game. My voice is gone from all of the yelling. And we left so blissfully happy returning home by 12:30, to give Mady her lovenox shot.
The girls had gone out to dinner with Grandpa. They had an hour wait for a table, ate tons of bread and oil (Joes has the best bread) and a calamari appetizer, so the fridge is full of main dinner leftovers. Mady said that she and Julia had a fun time with Grandpa, and that he told lots of interesting stories. It was a fun night for all at the Klein-Arthur house and we feel blessed to have had this treat and night out!!! (Dad, you are the best!! Thank-you!!) -ca
Grandpa Dick recalled before the game that a few of Mady's first words were "Go Shawn Kemp!" (back when we were Seattle Sonics fans). 
Now I think (maybe) she'd say "Go Kevin Garnett" instead! :-)
Btw, she had a problem-free LP on Monday! -tk
Day 231: The World's Best Hand Sanitizer
Sunday, April 27, 2008 - We have recently found our favorite hand sanitizer... and believe me, we've become hand sanitizer aficionados in the last 231 days! Mady's life could (literally) depend on the stuff.
First the runners-up:
The also-rans include the original Cal Stat Plus, which we learned to love/hate during those first 40 inpatient days at MGH (see Day 18).
Purell, which I've had on my desk for over a year now. To keep us all healthy, my office provides it in all our conference rooms. (we are sooo much more productive when we're not sick!)
Germ-X, the big bargain of the group at 32 oz. for less than $5 at Walgreens. We've also used a crappy off-brand (not pictured) that my office gave away at a recent conference.
The Cal Stat has the MGH market sewn up and has a baby-powder scent that Chris likes, but it now makes me gag. In my office, we joke that our Purell smells like a refreshing Vodka and Tonic (mmmmmmm). Germ-X is pretty much just inexpensive Purell (but it smells like cheap vodka... definitely not Ketel One!) and when we first got back from MGH Chris cleaned out the entire supply from Walgreen's throughout the Northeast. The give-away stuff? Don't ask.
What's the best hand sanitizer in the world? The unanimous choice in our house is EO's Organic La
vender. It contains organic alcohol, organic lavender oil, organic jojoba oil, and it smells really great. Oh, did I mention it's organic too? It doesn't dry out your hands (thank you jojoba), but it might be a little too pungent for some (we like it that way).
By the way, as with all alcohol-based sanitizers, you need to use enough so that your hands are wet with the stuff for at least 15 seconds to be effective against germs.
If you're interested in trying some EO (Essential Oil, I just got that), I've found the best prices (and great service) at Omni Supplements...
And now, a tiny bit of Mady news...
Last Thursday, the doctors were unable to give Mady the scheduled lumbar puncture. This time it wasn't a blood count issue... they simply couldn't penetrate the needle into her spine, and after several tries they postponed the procedure to next week. This was a long and scary day from Chris' point of view, and she came home exhausted. Clinic days are tough on both of them...
Day 227: Glow-Bowling
Wednesday, April 23, 2008 - It's April vacation, and we've had some beautiful sunny warm days. The cherry blossoms are out, the air smells like spring, and 15 bags of yard waste are waiting for pick up on our curb.
Madeline has another LP (lumbar puncture) tomorrow and maybe a blood transfusion, so we know it's going to be a long day at clinic. She is on the last part of the most intensive phase of chemotherapy and finishing up 2 weeks of 4 days per week Cytarabine and a daily dose of Thioguanine. She is doing so well so far, very stoic about her aches and pains and the chemo side effects, and pretty cheery around our home. We try to make life a little more special when she is going through treatment, and often set up fun things to do with friends or family.
Tonight we met my brother's family for dinner at Johnny Rockets (onion rings!!) followed by a spirited game of Candlepin Bowling at the Woburn Bowladrome. It's tougher than it looks, and so fun... especially when they turned on all the blacklights and everything in the place started to glow! Who won? Mady and her young cousin Carolyn were the high scorers of the evening... beating even the four parents!
Day 225: The 112th Boston Marathon
Monday, April 21, 2008 - The weather was absolutely perfect today, and Mady, Chris, Julia and I made our way to Mile 20 of the marathon route... just before the infamous Heartbreak Hill. We were on a corner with hundreds of other yellow-shirts supporting the MassGeneral Hospital for Children marathon runners.
We were looking for: Tracie Munzert, Kwan Kew Lai, Lance Armstrong, Matt Damon, and Katie Holmes. Tracie is an MGH nurse who was running the marathon in Mady's name, and we got to meet her last night at the Seaport for a big carb-loading-dinner for the MGH runners and the kids for whom they're running. She told us that she had easily exceeded her goal for donations in Mady's name... thanks to all of you who pledged! She also said she was hoping to finish the race in under four hours. Kwan was running in Mady's name for the Leukemia and Lymphoma Society.
I think I might've caught a glimpse of Lance Armstrong early on in the race, but I'm pretty sure that Matt and Katie were no-shows. Sadly, we didn't spot Kwan, but we did see Tracie as she flew by, en route to a 3 hour 53 minute finish! Congratulations Tracie!
Mady was feeling pretty good today (lucky, since we had quite a hike from the parking to the race). We basked in the sun, saw all the elite runners (including Robert K. Cheruiyot, the Kenyan runner who won the race again this year with a time of 2:07:46), and got to cheer Tracie and Kwan... a nice day in Boston. Oh, and... happy Patriot's Day!
Day 217: Holding pattern...
Sunday, April 13, 2008 - Mady had a blood draw and analysis on Wednesday in preparation for starting the next round of Chemo on Thursday. Her ANC (neutrophil) count was 590, too low to begin the next day. They require that she have at least a 750 to start the chemo round, so they'll check again on Monday or Tuesday. A few days' reprieve... she's still feeling pretty good, but this next treatment is likely to end that for a while.
We still miss Chris' mom, and I wanted to publish my favorite picture of Mady (or Mimi, as we all called her 9 years ago) and her Nana Helen...
Day 212: A Good Omen?
Tuesday, April 8, 2008 - Mario Chalmers made a 3-pointer with 2.1 seconds left to force overtime in the NCAA championship game on Monday night, and give his team a chance to win a game that had seemed almost out of reach just two minutes before. Kansas went on to win, 75-68, in what many are quite-accurately reporting as the "best basketball game of all time."
Day 210: Go (away) Lunchables! I mean, Go Jawhawks!
Sunday, April 6th, 2008 - Mady knows that Kansas University is my alma mater, and I just asked her if she's pretty excited that the Kansas Jayhawks have made it to tomorrow night's finals of the NCAA basketball tournament. Without even looking up from her computer she said "Yeah Dad" (and I thought I detected a slight eyeball roll). I asked her if she was planning to watch the championship game with me tomorrow, and she said "Ummmm... no." Sadly, my master plan to mold her into a fanatic KU basketball fan while she's weak with chemo hasn't worked.
She is done with the Decadron steroid for the time being, so she's no longer ravenously hungry. The drug also made her cra
ve crazy things--for example, we went through a period where she would only want Lunchables... breakfast, lunch and dinner... Lunchables. There were times when I would run to the store because the Lunchable supply in the fridge was too low. Now, post-Decadron, she says she can't even think about Lunchables without getting a little nauseous (I know the feeling--they make me react the same way).
Thursday is a big blood-draw and Chemo day. We're expecting her counts (neutrophils) to continue heading down., but in the meantime she still feels pretty good. Reading lots, computing lots, and sleeping lots...
Mady just said "Rock Chalk Jayhawk K U..." Maybe there's hope for her yet! :-)
Day 203: Raindrops Keep Falling on my Head
Sunday, March 30, 2008 - This weekend we visited The Hole in the Wall Gang camp in rural northeastern Connecticut. The camp was started by Paul Newman almost two decades ago. He envisioned a summer camp where kids with cancer and other life-threatening illnesses could have a great camp experience. According to their website, "children become naturalists and fishermen, athletes and actors, equestrians and hot air balloonists, potters and painters, poets and photographers, swimmers and singers, fly tiers and fly fishermen, outdoor campers and canoe paddlers, clowns and musicians, woodworkers and kite flyers. At stage night, awards night, carnival day, the camp dance, and through 'cabin chats,' and camp songs and celebrations at every meal, campers inspire each other."
The place looks like an old-west assemblage of buildings from Newman's Butch Cassidy and the Sundance Kid movie, and the camp takes its name from his gang in that show. It was designed by the Dean of Yale University's School of Architecture and won an American Institute of Architects Honor Award (as architects, Chris and I were pretty impressed).
It's a really nice camp, but what makes it work for seriously-sick kids is the 1:2 ratio of staff/counselors to campers. Plus, they have a state of the art clinic (The OK Corral) that is run by Dr. Space, a pediatric oncologist, along with over a dozen medical staff when the campers are there. They even have a round field where a helicopter (or medevac) can land, but I heard that it's been rarely used (and then only by the occasional visiting celebrity).
Our tour guide happened to be the long-time director, and we heard some great stories about the camp. Last year the troupe from 
Wicked performed and ran some drama workshops with the kids. The cast from High School Musical also performed--it seems the camp has some very good connections! I noticed that they used mostly Newman's Own food products, and the director told us about a time when Paul Newman visited and they had just run out of HIS salad dressing (for the first time ever). At lunch, he picked up the bottle of the Kraft replacement and made a funny face. She said that hasn't ever happened again.
It was a beautiful day (no raindrops on our heads) and Mady thought the place was pretty cool. She's looking forward to spending a week there--if she gets in (there are always more applications than open slots).
Currently, Mady feels pretty good, but she's now back on that steroid chemo that makes her VERY hungry...
PowerPuff Girls Attack that Cancer
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St. Baldricks, Leukemia and Lymphoma Society and MGH Yawkey Center
I can be very cynical about giving. I wonder if my few dollars actually help. You hear of charity organizations where the leadership seems overpaid, where money seems like its wasted, and priorities muddled.But here we are in the Yawkey resource room that is funded by donations, writing on donated computers. I have just sent out Madeline's application to The Hole in the Wall Camp, a camp for children suffering from cancer funded by donations, and the music therapist, art therapist, acupuncture/ pressure person and massage therapist are all funded by donations, as are the movies Mady watches when it's going to be a long day at the Yawkey Center. Research money for cancer has significantly dried up in the US since the war, and other areas in the world are becoming the centers for excellence for cancer studies as a result.
So, can a few dollars help? Well, I think it's akin to building an art center. My few dollars aren't going to build an art center, but combined with so many others few dollars, well now we have enough to build something that together we can be proud of. And that goes for funding cancer research and cancer amenities. So I am asking that you spend 25$ on one of the following organizations. Many 25$ donations will help the cause and these organizations make a difference and are well run.
Tracie Munzert (shown above) will run the Boston Marathon in Mady's name and any money that you sponsor to her will go directly to serving the amenities for the Childrens oncology at MGH.
http://www.firstgiving.com/traciemunzert1
Kwan Kew Lai, will also run in Mady's name and money sponsored to her will go to the Leukemia and Lymphoma Society:
http://www.active.com/donate/tntma/112thBostonMarathon2008KwanKewLai
And Nate Guzikowski, cousin to Patty and Chris, will shave his head and donations made to him will fund research for the Childrens Oncology Group through the St. Baldricks fund. The St. Baldrick’s fundraiser is on April 10th. Participants shave their heads to raise money every year around the world. After you get on their website, click on “Sponsor a Participant”, type in Nate Guzikowski. You’ll see him with hair!! Click on “Donate” and it will walk you through the donation process.
http://www.stbaldricks.org/index.html#
And please vote for funding cancer research with your tax dollars through the NIH. Funding has remained flat (which translates to a steep decline given inflation) for the past 5 years. We want to keep as many bright shining stars of hope out there in the form of cancer researchers, and to do that, grant funding is imperative.
Love, Chris
Day 187: It's ba-aack (the dreaded subcutaneous asparaginase)
Friday, March 14th, 2008 - As expected, Mady started the Delayed Intensification phase last Tuesday. Some old chemos, some new chemos... same Mady. She did well, and she seemed about the same as usual--but perhaps a little more tired.
What she was really not looking forward to were the dreaded PEG-Asparaginase hypodermics. In the past, these infrequent shots involved five powerful nurses--two to hold her legs steady and three to administer the three large simultaneous injections. I may be imagining the part about the leg holding, but there were definitely at least three large nurses with syringes. (This is Chris adding my comments- There were no LARGE nurses involved. In fact, the 2 nurses who gave her the shots are very petite.)
She got the PEG-Asparaginase today, and the nurses decided they could put the same amount of drug into just two even-larger hypos (each of which looked like a liter-sized bottle of soda). (AND, the shots aren't liter-sized. This is not to say that I'm not REALLY PROUD of my daughter, because I am. It's just that Mady is beyond it almost. She just gets the shots and moves forward.) Over dinner this evening, I asked her how it went, and she said "It was okay." Then I asked how it compared to the first one, which I remember as being awful, and she said "It's better now. You get used to it!"
Along with reading, music has become a big part of Madeline's life (not surprising for a 14-year-old girl, I guess) and she listens to her iPod quite a bit (also not unusual). She loves to find (and download) new music. This week she even downloaded a few TV shows. And we have held out so long against cable!
ps: If anyone's trying to call us this weekend, our house phone is not working. Our phone is connected to our internet, and our internet is currently down. You'll reach our Verizon voicemail, which can only be checked via the internet (down) or our phone (down). You can reach us via our cell phones though... we look forward to hearing from you! :-)
pps: Did anyone figure out what the diagram was in the previous post? (Me again- The diagram correctly labeled by Mark (a cancer researcher- GO MARK!!!!!) is a drug that Mady is not required to take. It's only required when there is a reaction to the Methotextrate. One less drug. Yahoo.)
Day 183: Delayed Intensification almost begins
Monday, March 10, 2008 - Okay, in the last post I said that Mady would be starting the Second Induction chemotherapy phase on Tuesday. Turns out I was half right: she starts the Delayed Intensification phase on Tuesday. I should've been completely wrong, because she was supposed to start today after not having eaten anything since the night before. But, I heard her scream a big "OH NO!" this morning when she remembered that she shouldn't have just eaten her big yummy breakfast... so, Delayed Intensification is delayed until tomorrow.
She'll get many of the same drugs that she received during her initial Induction phase (hence my confusion about the name) at MGH: Cytarabine, Dexamethasone, Methotrexate, Vincristine, and the dreaded PEG-asparaginase (see Day 6) . Plus, she'll get some new ones: Doxorubicin, and Thioguanine. This is five weeks of quite-intensive therapy, and it's likely to hit her pretty hard.
Positive thoughts are very much appreciated... especially during this Delayed Intensification phase. Thank you family and friends!
Day 181: The Funeral
Saturday, March 8, 2008 - Today was Nana Helen's funeral. A small but lovely mass at St. Rita's was followed by a large and wonderful service at the Tabor Academy chapel and a reception in a nearby hall. Inspirational words, beautiful music, touching stories from family and friends, many tears, many hugs... Both services were inspiring... Helen touched sooo many lives. She was well loved, and will be deeply missed.
I talked with many people who we haven't seen since Mady's diagnosis, and everyone was happy to see her and very interested in how she's feeling. For the record, she seems to be doing great these days... not going to school much, but reading voraciously--sometimes up to a book a day. She's also doing reasonably well with her grades, which is amazing to me considering how little she attends. Perhaps this is a testimonial to the power of one-on-one tutoring, compared to being part of a large class. Or, maybe they're cutting her a lot of slack. Either way, she'll be fine... she's a smart girl, stronger than ever, who still has her sharp sense of humor and that twinkle in her eye.
Mady was supposed to start her next phase of chemo yesterday, but her oncologists said it was okay to delay a few days for the funeral. So, I think "Second Induction" starts on Tuesday. Those of you following along with a scorecard (the protocol information that I provided earlier) may be saying to yourselves "Huh? Second Induction? I don't see that on that nice calendar you posted a while back on Day 59." Well, my response is, hmmmm... you seem to be right. I'll check on it and get back to you!
In any event, Mady is about six months into a 2 1/2 year protocol... 20% done, according to my calculations. She will definitely have to complete the entire chemo program to have a good chance of completely ridding her body of cancer. There are no tests accurate enough to detect any leukemia in her body right now, but the oncologists know that if they stopped at this point (which they used to do), the cancer would very likely return with a vengeance in a few years. Decades of data show that there is great benefit gained by treating ALL for 2 1/2 years... likely killing that all-important very last leukemia cell. Why not 5 years? Or 10 years? Actually, they have tried that, with very little additional benefit. Barring complications, Mady is likely to be cured shortly after her 16th birthday in early 2010. Ah, what a great day that will be.
In the meantime... We love you Nana Helen, and we miss you.. -tk
Mady and Nana Helen... a few years ago
My Mom, Nana Helen's obituary
Helen A. Arthur
d. March 1, 2008
Published in the Boston Globe, Sunday, March 2nd, 2008...
Helen Adams Carroll Arthur often referred to her grade school days in the North Shore town of Salisbury as being the perfect atmosphere for a youngster to grow and enjoy the outdoors and it was where she fostered friendships from the first grade that have provided her a lifetime of annual get-togethers with those classmates. Helen was born in the Allston section of Boston in 1940 to Andrew J. and Irene A. Carroll moving to Salisbury when she was five. Helen attended Newburyport High where she enjoyed competitive athletics of basketball, a sport that she played later in life taking on her children in games of HORSE in the driveway. Sports were important to Helen and she made sure that her children participated in sports in all of the seasons. She enjoyed tennis with her friends at the Sippican Tennis Club, golf at the Kittansett Club where she was a member for many years and skiing throughout North America with her children. Her love of fashion and interior design inspired her throughout her life and was evident in her beautifully decorated homes as well as her personal sense of style. She also delighted in the beauty intrinsic in design and color of the gardens at her home and in creating unique floral arrangements. Her nightly potpourri on the piano, performed while the children did homework with her background encouragement, was silenced in 1987 by rheumatoid arthritis. She never complained nor did this disease dampen her love of music or of sports.
Helen married Richard I. “Dick” Arthur in 1959 and briefly lived on Ring’s Island across from Newburyport. Living in Newport, RI for four delightful years was followed by forty-three years in Marion on the Massachusetts South Coast. Helen was active in the Catholic Women’s Club of Saint Rita’s Parish and delighted in managing the teenage girl’s softball team of the Parish.
Focus on family was always first with Helen and she has been the confidant of each of the children from their youth, as well as providing the deep, constant love and encouragement that youngsters cherish in a mother and grandmother.
Helen died Saturday, March 1st in Marion after a short illness surrounded by family. She is survived by her husband and her children Jeanne and her husband Ted Ackley of Warren RI; Richard and his partner Stephanie of Mattapoisett; Brian and his wife Lynn of East Greenwich, RI; Christine and her husband Trey Klein of Belmont; and Stephen and his wife Elena of Marblehead. Her grandchildren, to whom she is known as “Nana”, Kathryn, Jon, Emily, Tom, Madeleine, Julia, Anne, Carolyn, Grace, Flora Jeanne, Jameson and Evan will miss her greatly. Survivors also include her siblings Robert Carroll, and Anne Jones of Salisbury, MA and Mary Easto of Venice, FL. Helen is predeceased by her son Jonathan and her sister Irene Mulrey of Walpole, MA.
Visitation will be held at the Saunders-Dwyer Mattapoisett Home for Funerals, 50 County Rd., Route 6, Mattapoisett on Friday evening March 7th from 5 to 8 PM. Her Memorial Service will be held at the Wickenden Chapel at Tabor Academy on Saturday the 8th of March at 11:00 AM. In lieu of flowers, contributions may be made to the Sippican Lands Trust, 589 Mill Street, Marion, MA 02738. For directions and guestbook, click here: Saunders-Dwyer (select Mattapoisett, then Helen Arthur and feel free to leave a message there for my Dad or family).
Helen Adams Carroll Arthur
Madeline and Julia, Trey and I, and my brothers and sister and their families spent Sunday day surrounding my Mom as she lay in her bed, Buttercup and Scooch bounding in and out at will (Bella stayed home). Still beautiful despite the ravages of a long battle with cancer, she put up with all of our sillier stories about her and rolled her eyes on a few occasions.
Mostly, we held her and hugged her and told her we loved her and that she will be painfully missed and those words and actions continue. Last night the siblings hung out and rotated through the night comforting Mom, while my Dad was able to sleep for a few hours, and today she looks good, is upright, her sister Anne by her side regaling us with her quick wit. Some words to describe my Mom:
beautiful... serious... energetic... impeccable... dynamic...exquisite...funny... thoughtful... a good listener... private... immaculate... intelligent... a nature lover... elegant... a reader... stoic... exacting... capable... loving.. a good friend, confidante and advisor to each of her children...one half of a dynamic duo...The Amazing Nana...
She is resting now, a reprieve after a long day. We love you, Mom.
The depths of emotions are unmined only in my ability to put them into words. Love, ca
Day 163: Hives? Blood can give you hives?
Tuesday, February 19, 2008 - We recently discovered a lovely Cancer stamp with an inspiring message:
What cancer cannot do
Cancer is so limited...
It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit.
Madeline has received her last protocol for this Interim Maintenance phase and will begin the next phase (Second Induction, I think) on March 6th. In the meantime, she will need periodic blood and platelet transfusions. Today was a two pint of blood day at the Yawkey Outpatient Clinic, but for the first time she had a reaction to pint number two and broke out in hives half way through. This made the day last much longer than usual as they stopped the second pint and had to monitor her the rest of the day. Whew.
At this moment, we're all watching American Idol... except for Mady, who is contentedly sleeping here beside me, exhausted after her big hives day at the clinic.
Day 156: The Chess Game
Tuesday, February 13, 2008 - Well, lots has happened since we last wrote... fortunately, very little of it is about Mady! She's in good spirits, is reading tons, hasn't been too nauseous, and seems to be doing quite well. She is still pretty tired and hasn't been going to school very much, but her tutor (who she likes a lot) comes over once or twice a week. Mady just got her report card for last semester and got amazingly good grades for someone who plays so much hookie. ("Plays hookie?" Do people still say that? Or have I turned into my grandpa?)
Last Saturday, Mady had her first sleepover since the diagnosis. Chris drove over to administer the just-before-bedtime Lovinox shot in her thigh, and except for that it was a pretty normal event--just like the good old days (another grandpa-ism). Life is kind-of-sort-of approaching normal, with an occasional reminder of the seriousness we still face. But on the whole, we're pretty good right now.
Something happened yesterday that I'll remember for a long time. Mady and I play chess every so often, and I think she really enjoys the game. In order to help her learn, I often give her hints after she's examined the board for a while. Last night I gave her no hints, and she flat out beat me. I think she used the Derdinsky Defense or the Oppenheimer Offense, or something like that. If this begins to happen with regularity (and I have no doubt that it will), I'll have to do what Chris did to me when I started beating her at chess years ago: pull out the chess clock and turn a lovely game into a frantic speed chess frenzy! :-)
I did mention that lots had happened since Day 141... I'm mostly referring to the presidential nomination surge of Barack Obama (on who's campaign I worked making calls, holding signs, and driving around with an Obama car-topper) and the Super Bowl surge of the Patriots (I don't even want to talk about it--I'm still in the denial phase).
Day 141: Are we still here?
Monday, January 28, 2008 - Well, I can tell that it has been too long since I've written a blog entry... My mom (aka Grandma Peggy) just sent me an email asking if I've gone out of town on some extended trip or something. Noooo... we're all here. Still doing the chemo protocol, and it still sucks, but life seems a little more normal these days.
Mady is really being strong. She has been going to school at least one or two days a week for the past few weeks. Something in her current mix of chemical meds has been making her a bit nausiated recently, but she keeps her "barf bucket" nearby and all is well. We've taken a few of our outdoor family walks and pushed her to her limits, but she sits and rests when she needs to--and Buttercup can pull her when she needs it!
We strive to keep our family activities as normal as possible, but the life-or-death seriousness of it does punch me in the face occasionally (and at strangely random times). We're maintaining a delicate balance between laughter and panic... and once again, it's our family and friends that steady us. Thank you.
Go Pats!!
For the past 2 Fridays, everyone at the pediatric cancer center at the Yawkey Center has dressed in Patriots shirts in support of the home team. Our nurse Suzanne says that her shirt belongs to her son, that she doesn't own a Pats shirt, but we wonder about that since it fits her perfectly. Today we arrived at around 9 am, stopped briefly at the Cancer Resource Room for coffee and hot chocolate (available on Fridays), checked in and waited a few minutes for Kathy to take vitals, let Madeline pick a room (room 5 with a Disney theme is her favorite), and start our day there. Suzanne accessed her port (I am dismissed at this point and allowed back in when its done about 15 minutes later) , set her up with an IV saline that helps curb the effects of the methotextrate and started her on Zophran for nausea. Mary Jo came in to give her a quick physical to make sure the drugs aren't doing anything unwarranted, let us know the results of her blood draw and what we can expect in the coming weeks.
The drugs she will receive in this part of her protocol are based on her blood counts. They don't want her white cell count to go too low, so if her white count is really low, they'll give her less drugs, and if it's at a higher level, they will escalate the drugs. Madeline's white count was high enough to escalate the methotextrate amount.
Today Suzanne brought in from ConKerr Cancer a bunch of brightly colored pillowcases, donated to the cancer center so the kids here (and in other pediatric cancer hospitals) will have something other than white sheets on their beds. Madeline picked out a bright green one with pink highlights and an evergreen edge (it was my favorite too). She was visited by the acupuncturist who gave her a nausea acupressure point and later, a massage therapist who gave her a foot massage and whose son is in Julia's class at school. Since their introduction a few weeks ago, foot massages have been on both kids nightly venues.
Even on a day where there really isn't much to do, we didn't get home until 2:30. Juliet brought Buttercup back at 4, and I was able to get out for a walk/jog on this unexpectedly beautiful, sunny afternoon. Julia just called moments ago with the query "what are we having for dinner, because Sarah is having...." suffice to say, she chose Kim's home-made mac n' cheese to leftovers.
This last week was pretty tough and Madeline did not make it to school. When you feel nauseous and head-achy standing up, its really hard not to opt for a comfy couch at home. Hopefully, next week she will feel a little better. Have a great weekend. Love, Chris
Day 124: Peg Aspariginase
Friday, January 11, 2008 - Madeline and I went to the Yawkey Center again this morning so she could take the "dreaded peg aspariginase," two shots into the muscles of both thighs given at the same time by two nurses. Madeline held my hand and her nurse practitioner, Mary Jo's hand and sang out in an operatic voice, something akin to "AAAAAAHHHHHHHHHHOOOOOUUUUCCCHHHH" hitting a few notes not found in the natural world while her nurse Suzanne and another nurse, Heidi administered the shots. Everyone laughed at Mady's response. After being watched for a few hours in case of a reaction, we were allowed to leave with the assurance that she would be near an epi-pen for the next day.
She has done so well through all of the treatments, even ones that really are unpleasant like today's, that we often get to glimpse stunningly courageous parts of our daughter that bring tears and joy simultaneously. She is now resting on the couch reading, smelly Buttercup is about to be bathed by a very ambitious Julia, and I am about to tackle the "stuff" drawer in our kitchen that is far too "stuffed." Have a great weekend. Love, Chris
Day 123: Madeline Begins Interim Maintenance
Thursday, January 10, 2008 - Madeline is sitting on her bed at the Yawkey Clinic re-reading a book, being plumped with saline in anticipation of the IV methotextrate today. She will also receive vincristine, intrathecal methotextrate, and tomorrow... the dreaded peg aspariginase, complete with a 3-week round of lovenox... actually, it's more like a 6 week round of lovenox considering she'll have more peg in 3 weeks. We'll have the epi-pen handy tomorrow in case she turns into a hive, and a few musicals on hand so she can practice for her symphonic response to her nightly shot.
Today, we both forgot about not eating before her lumbar puncture procedure but were still given the go-ahead since her 7 am break-fast allowed the requisite 6 hours for her LP at 1:30 pm. We are so glad to be on a Thursday rotation. This allows all of her LP procedures to happen at the Yawkey Center, where they transform one of the examination rooms into a procedure room, complete with anaesthesiologist. On any other day, the procedure takes place either in the same day surgery at MGH or in their new pediatric intensive care unit (very nice), both places where the anaesthesiologist and nurses will be different each week and unknown to Madeline. The Yawkey Clinic is cozy and familiar, and given how scary this has been for all of us, especially Mady, those are excellent qualities.
It will be a long day today. Be Well! Love, Chris
Happy 14th Birthday Madeline!
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Sunday, January 6, 2007 - Mady turned 14 yesterday, solidly in her teens now, we still summon quantities of surprise at how time really does fly. The past week was pretty good! Mady's ANC count was still about 220 last Wednesday. She needs to be at 750 to start her next round of outpatient chemotherapy, so she'll be tested again this week to see if she can begin her Interim Maintenance protocol this Thursday (fingers crossed). Although her ANC was low, the doctors are encouraging her to go to school unless her ANC goes below 200. So she set a new (post-September) record by going to school three days in a row! As I mentioned previously, her oncologists really prefer fewer gaps in her chemo, but in the meantime she lives a somewhat more normal life. The biggest change is that she started wearing her wig to school, even though she says it makes her head itchy.
Day 112: It's Not About the Cap
Sunday, December 30, 2007 - Several of you noticed, way back at Day 48, that Lance Armstrong (seven-time consecutive winner of the Tour de France and cancer survivor) had left a comment to Mady on this blog. We had given him one of Mady's Cancer Sucks bracelets via our friends Kim and Bob (who are highly involved in cancer charity work through the Connecticut Challenge... more on that great event in a future post).
Kim said that Lance thought the bracelet was cool, and he told her that he shared the sentiment completely. The post was from Lance along with Doug Ulman (president of the Lance Armstrong Foundation). Mady was very impressed that they wrote to her.
A few weeks later, Mady got a package in the mail. It contained a LiveStrong cap inscribed to Mady and signed by Lance!
Amazingly, it turned out that the cap was completely unrelated to the bracelet and blog post--it was orchestrated by my friend Kathy in Austin. Her kids attended the same pre-school as Lance's twin daughters and her son Joey was friends with them. She mailed Lance the cap, a sharpie pen, postage, an address label to Mady, and a letter about her cancer. He signed the cap and mailed it to her.
Mady keeps the cap in a place of high honor: It's proudly displayed on her lovely wig and pink wig-stand in her room, as seen in the picture above. Thanks Lance (and Kathy)!
Current Mady update: Her neutrophil counts are way low this week (ANC around 100) and this postponed her scheduled chemo by a week (at least). This is a mixed blessing: It was nice to see her more during my vacation week, but her treatment is very proscribed and the doctors prefer not to see too many gaps. Plus, it just effectively extends the end date...
Oh, and we just got back from a walk around Turtle Pond (one of our family's favorite hikes, right here in Belmont at Habitat)--we hadn't been there in a long time. Mady was quite tired, but her lack of energy was more than made up by Buttercup... who basically pulled us the entire way.
Here's a picture we took today in front of Turtle Pond (if you click on the photo and enlarge it, you'll notice that Buttercup is actually slightly airborne):
We had a great holiday and we hope you did also! -tk
Day 104: RSS Feed? Huh?
Saturday, December 22, 2007 - In the Comments of the last post, our friend Ray included a URL for an RSS (thanks Ray!)... and some of you may be thinking: URL? RSS? WTF? Well, a URL is simply a web address, and RSS is Real Simple Syndication (or maybe Rich Site Summary)... it's a way for you to have a link on your home page (or many other places) that will alert you when new posts are added to Mady's Parents' Page.
Having an RSS feed means no more having to open the blog a hundred times a day only to find that we haven't updated the site in a few days!
How do you add it to your home page? Look for a link on your home page that says something like Add RSS Feeds (or Add Content), click it, and you should find a place where you can copy/paste the URL that Ray provided: http://feeds.feedburner.com/Mady
For example, for the Yahoo site (My Yahoo) that I use as my home page:
- Near the bottom of the page there is a button labeled Add Content. I click it.
- This brings up a screen where I can search for RSS feeds (there are MANY of these) or I can click a link called Add RSS by URL (which I do).
- This displays a box where I can type (or Copy/Paste to avoid stupid typos) the URL that Ray provided.
- I click the Finished button, and I'm done! Now my home page displays the latest few posts and when they were added. If there is one I missed I can click on it and go right to it. The RSS display looks like this:
There are lots of great RSS feeds. The example above shows that I'm also monitoring Leukemia news (from The Leukemia and Lymphoma Society) and new Urban Legends (from Snopes.com), among others.
Actual content about Madeline: Mady's feeling well enough that she's been regaling us with operatic singing the last few days... must be a strange side effect of a new chemotherapy drug. :-)
I hope everyone's holiday plans are going well! -tk
Day 102: Well, the good things are....
Thursday, December 20, 2007 - ...we really needed to clean the basement. And we found out the wet dry vac really does work. And I found my ice scraper, the one I hunted for when the snowstorm hit. And tax statements older than 10 years are not important, and the hand me down clothes were all in plastic bags.
Our hot water heater sprung a leak sometime over the past week, and flooded the basement floor with water. The words "Trey, I really don't like plastic boxes, please pick up cardboard storage boxes," are resonating right now as we slog through the mess.
Even our house weeps. ha. ha. -ca
I learned some valuable Hot Water Heater lessons with this experience:
1) Most everyone likes the idea of having an efficient Hot Water Heater, but it's difficult to spend the cash when your current (less-efficient) one seems to be working just fine.
2) People don't remember when their Hot Water Heater's warranty is due to expire.
3) Hot Water Heaters will fail catastrophically very shortly after their warranty (10-year, in our case) expires. Own a good wet/dry vacuum for this occasion (oh, and it's also good for inflating stuff).
4) Plumbers (and their plumbing supply warehouses) only stock inefficient models, but they're happy to special order the one you want... it just takes 2 to 5 weeks. It's simple matter of supply and demand, they say. I tell them I demand a more efficient one, and they reply that those are not what they have in their supply. Supply and demand... of course.
5) In the winter in Boston, you really need hot water.
6) So you end up buying one of the less-efficient models, thus proving to the plumbers that the demand for these energy-hogs still exists... and they no doubt stock up with lots more of them.
7) Highly-efficient or not, the hot water it makes is clear and steaming, and it makes for nice showers and wonderful soaky baths... and that's what's REALLY important to our family right now! :-) -tk
Day 100: THANK-YOU!!!!!
Tuesday, December 18, 2007 - It's Tuesday morning and we are at the Yawkey Clinic because Madeline needs a transfusion of both red blood and platelets. Hurrying from the car to the elevator, Madeline had to remind me that she has a low hematocrit (crit) and "please mom, walk slower." Along the corridor on the 8th floor is a Christmas tree with a whole bunch of knitted and sewn hats for the children who have cancer. The waiting room for the pediatric oncology is open, sunny, has a giant fish tank and an area for tots and more hats. There is an array of of colored bears on the counters for any of the visiting children. There are duck like chairs and a magazine rack on 4 sides of a column that has everything from Highlights to People. Madeline grabs a People. She is ushered in quickly so that her blood stats can be processed for the transfusion. She'll be here for the rest of the day as it takes a long time to transfuse blood and platelets.
In her room is a large gift bag with a High School Musical theme on the outside. It says Mady on the front. Suzanne, Mady's nurse, says it is from the computer people here at MGH. Every year at this time, they take the first names and ages of the cancer patients and put together a gift for them. What a sweet surprise. I start to cry.
I try to prepare myself when I am out and about so that I'm not bawling in the middle of the super market. The other night at the esteemed Band-o-rama, where Julia was playing the flute, and for the past 4 years, Madeline, the saxophone, I was downright rude in an effort to keep people from comforting me and the resultant bath of tears. It's not that I'm lacking hope. It's that this place I am in is more permeable to the plethora of pain and kindness that's abundant in our world.
A few days before Thanksgiving, a friend had a gratitude circle, an impromptu meeting of women who gathered and stated (or cried through) the things that they are grateful for. I feel so much gratitude to the people who have surrounded us with love, and I am especially grateful for having my Mom here, as she is sick with cancer too. I am so thankful to be able to call and talk with her anytime, and visit with her while we are going through this. My Mom and Dad would show up faithfully at MGH each week and be so silly and funny and goofy and kind and reassuring and hopeful and loving and caring and well, amazing parents to me and wonderful grandparents to Mady and Julia. I have spent hours on the phone with my Mom, and I know, even as I hang up, that I am blessed to have her here. Thank-you! ca
I'm the one adding the numbered days to this blog. I'm not completely sure why, but I do think it helps me to see the steady and inexorable progression of the numbers as they head toward the cure (around 900, I think). Today is 100... a nice round number and well over 10% done! The end will be here before we know it.
Like Chris, I also was sad at Bandorama. It was great to hear Julia in the 6th-grade band, but when the 8th-grade band performed it was Mady-less--she was back at home resting and avoiding the coughing/sneezing/microbe-breathing crowd. After all the performances we've been to, I really missed hearing Madeline's mellow saxophone in her group. tk
Looks like the reaction was to the platelet transfusion
...as she had no further reactions last night and a typical allergic response to the peg aspariginase includes multiple hive attacks. This is good news for her drug protocol. For those who do have a reaction, they substitute a similar drug that is not as effective.
It's a beautiful, sunny day and it's time to go sledding. Love, Chris
Madeline has had a Reaction
...to either the peg aspariginase or the platelet transfusion and we will find out over the next few hours which one. After the transfusion and peg shots, I left to buy lunch, giving Madeline the epi-pen and the nurse call button, and returned to find her being plied with benedryl and her arms pink with hives.
She is sleeping off the major dose of benedryl right now, and will be monitored here until closing time (5pm), when she will either be allowed to go home or will be transfered to Ellison 18.
There are repercussions with a reaction to the peg aspariginase (a product of e-coli) that will change her chemo protocol. We will be advised on that later.
Buttercup is in good hands with Juliet and Carlee, and Julia is most likely sledding in our winter wonderland at this very moment. Love, Chris
Prayer Flags
Buttercup in Late October
We are so glad to have Buttercup as a diversion. She is cute, lovable, almost house broken, energetic, but she also takes an enormous amount of time and care. We have a few gallant puppy sitters for our different hospital visits and we have just started to let her stay in her crate for short excursions (library, store). She is almost double her weight from her adoption day, a whole 5 pounds now, and at that small size, she has the capacity to clear a room (ahem!!), terrorize our 12 pound cats and snuggle with us for hours.
Day 82: 2nd half of Consolidation Begins
Friday, November 30, 2007 - Madeline is sitting in clinic today getting hydrated for the plethora of meds that kick starts the second half of Consolidation. These are the big bad chemicals that can cause major organ damage, so they require a certain hydration level in her body before and 4 hours of hydration following the drugs to lessen the potential side effects. Given the few hours it has taken to get her specific gravity to the right level and the 4 hours after, it looks like it will be a long day at clinic today. Bagels for dinner.
She has been exhausted lately, hitting the couch at 5:30 and moving upstairs after I give her the Lovenox shot at 9 pm. She has been too tired to go to school for the past week and the nurses mention that her exhaustion may continue for the next few months. She has a terrific tutor, Kim, who works at the middle school during the day and works with Madeline a few times a week in the afternoons. This week I mirror Mady's exhaustion, since our Buttercup has an ear infection and a small bladder, the 12, 2, 4am wake-ups leave me feeling blue all day. We all are looking forward to Treys return tonight<:) Love. ca
While Everything Is Going Smoothly...
...I thought I would mention that it has been very difficult writing some of the blog when I felt defeated. I often edit blog posts and I notice other Moms of cancer patients also admit to editing their blog. I edit my words because I know Madeline will read it and her friends read it and because it's very difficult putting myself out there expressing so much pain. But I also edit because I want to avoid feeling judged.
On another Mom's blog where she wrote some very depressing thoughts one day, every blog comment to that post started with a version of "I'm so sorry you are feeling so bad today" and ended with a version of "but look on the good side." I don't know her feelings, but for me, I thought the "look on the good sides" were misplaced. Yes, please send them, we all need to be reminded of the wealth of blessings we are given, just send them on a different day when things aren't so bleak.
For me, If I vent out very personal feelings of despair or pain, please join me in the trenches for a while and allow the pain to be without trying to help me out of it. It's a moment, perhaps an hour, or a day or two. Sad is sometimes very appropriate. Let it be. Love, ca
Day 79: Too Few Neutrophils Again
Tuesday, November 27, 2007 - Today we went to the Yawkey Clinic in anticipation of beginning the second half of Consolidation but were rebuffed after a review of Madeline's counts, an ANC of 670 not the 750 required. It was disappointing, but not too surprising given her hypo-cellular history. They had set her up with a bolus (large quantity) of saline so we watched a movie while that finished and did some shopping en route home.
Each time we go to clinic, they start by "accessing her port," which means that Mady has put emla cream on her port 45 minutes prior, and by the time we get to clinic, the area around her port is numbed by the cream. The nurse sticks a curved needle into her port with the opening in the needle on the backside of the curve so it can’t core through the skin. The needle is attached to a long tube and adaptor with a twist lock that attaches to another tube accessing any medications or needles that she may need. It’s really quite a simple and elegant solution, although I’m having a hard time finding pictures of the curved needle part on the web.
The Critical Care nurse will do another blood draw on Thursday and if Mady has the 750 ANC, then she’ll begin on Friday, otherwise next Tuesday. Do we fret? Of course!!! Love, ca
Day 77: Thanksgiving Holiday
Sunday, November 25, 2007 - I know what you're all thinking (and some of you are actually saying out loud)... "It's great that the chemotherapy is getting pretty routine now, but a full week without any news about Mady? Is everything really okay?"
Well, let's see. We had a lovely Thanksgiving with family down in Marion. We brought Mady's meds (obviously) and continued with the various daily liquids, pills and Lovenox shots. All was good until Friday evening, when Mady "got sick to her stomach"... a lot. Chemo meds? Food poisoning? A stomach virus? Chris called Mady's doctor and they suspected virus and basically said to keep her hydrated. The last episode was brought on by the "slimy texture" of the liquid Bactrim, a pink antibiotic ooze that she has to take three times a week. Yum. As quickly as it started, it was over by Saturday and all is fine again.
Mady and her cousins/uncles/dad (me) drove to New Bedford and went indoor rock climbing at Carabiner's, America's largest indoor rock climbing facility (and one of the biggest in the world). We met Steve, the owner/builder of the place, and had a good time. A new Thanksgiving tradition? Could be!
Mady's Aunt Lynn brought a copy of Stephen Colbert's book "I Am America (And So Can You)" and we all thought it was hilarious and enjoyed reading it while we were on the South Shore. We bought a copy yesterday when we came home, and Mady finds it very theraputic--she can't put it down! Highly recommended, especially for our most radical right-wing conservative friends (and relatives).
All in all, we are excellent Thanksgiving holiday (and so did you)!
Blogs
Please family and friends, create a blog about your family or yourself. You can keep it fairly private by requiring an access code, or it can be open like ours. We feel like everyone knows about us, but we don't know what everyone else is up to, so perhaps in lieu of the annual holiday letter, create and share a family blog. Love, ca
Day 70: No news is good news
Sunday, November 18, 2007 - We haven't written in a few days, but it's not because anything is wrong. In fact, it seems like we're in a chemo groove and the routine is getting, well... routine. Mady was quite tired after last Tuesday's treatment at Yawkey Center, but she had enough energy to go to school for a couple of partial days last week. In general, she feels pretty good.
Some of Mady's meds are given to her at home by us (well, by Chris anyway). Most of these are oral, but some are given by hypodermic. While we 
were still at MGH a few weeks ago, Chris was trained to properly administer shots, and the final exam was injecting herself with sterile water! Tonight I witnessed Chris give Mady a shot of Lovenox, a blood thinner that she needs daily for three weeks following the dreaded (and apparently blood-thickening) PEG-Asparaginase shots.
First Mady picked the spot and put on some numbing creme, then waited for 45-minutes--during which (at least this evening) she fell sound asleep as we watched the Patriots game. Tonight, the hardest part of the entire shot was waking her up and having her point out where she put the anesthetic. Okay, she'd tell you the shot hurt... but only for a second.
Now she's back asleep on the couch as New England routs Buffalo. She will not be happy when I have to wake her up to get her to go to her (much more comfortable) bed. Time out! She just suddently sat up, asked me to turn down the TV volume, and shuffled upstairs to bed. Wow!
Thanks for reading the blog and writing your wonderful comments everyone! Mady reads them all and really enjoys them...
Day 65: Who needs Morrie
Tuesday, November 13, 2007 - During the current Consolidation Phase of Madeline's chemotherapy, Tuesdays are a big day. Chris takes her to Yawkey Center for her lumbar punctures, bone marrow aspirations, blood transfusions, and IV chemos that cannot be done at home by a visiting nurse. Because of the anesthesia, Mady can't eat or drink anything after midnight Monday (which I reminded her as she poured Rice Crispies into a cereal bowl this morning). They get to the facility at 8:30 AM and basically spend the entire day there, returning home shortly after 5:00 PM.
Thankfully, I have some flexibility to work at home on occasion, so for the next month or so Tuesdays are my day to stay home with our 10-week-old puppy. I sit in our sunroom and work with my laptop connected to my office's computer network, while Buttercup amuses herself playing with her toys, taking naps, and giving me a little bark when she needs to go outside to do her business (I love that euphemism). If I have a meeting or appointment, we have a list of wonderful volunteer puppy-sitters... one of which I availed upon this afternoon (Patty and her daughters Nora, Sophie, and Lucia kept Buttercup very busy).
Mady did well today. In addition the the normal Tuesday procedures, she had the three giant simultaneous syringes of the dreaded subcutaneous Asparaginase injected into her thigh muscles. In spite of that, she looked great this evening and was in good spirits--certainly buoyed by a lovely visit from some of our superb (!) British friends. :-)
Even while fighting cancer, Life is good.
Day 62: Friday Change of Plans
Saturday, November 10, 2007 - Madeline went to school yesterday morning and at 10 am I received a call from Mary-Jo, Mady's onc nurse practitioner, saying that Mady had a low HCT (red blood count) and they would like to transfuse her but we would have to make it to the Yawkley Center by 11:30 at the latest. I called her critical care nurse, who gives Mady her chemo at our home, to let her know Mady would be transfused and due to time, have her chemo given at the clinic; found a puppy sitter (Bless you, Kim); made sure Julia's foster family was available (Thanks again Kim); and called the CMS nurse Rosemary Peterson, who found Madeline and made sure she was in the front office so we could travel directly to MGH.
As it happens, a number of patients made the mad rush for the Yawkey Clinic at the same time and there were no beds when Madeline arrived prior to the 11:30 deadline, so Madeline had a blood draw, something they have to do right before she receives blood, and we went to lunch. By 2:30 they started all the chemicals and the blood and we didn't leave until 6:30. The Yawkey Clinic typically shuts down at 5. We had planned to go out to see some Jazz with friends, but by the time we walked in the door, we were just too tired to go.
We talked to the doctor about Thanksgiving and our hope to spend it with family, and she said that as long as Madeline is feeling OK she can go to Thanksgiving, and go to school and do anything pre-diagnosis. It's such a difficult task to let go of all of the angst and allow us all to live as close to normal as this diagnosis allows and not fret. It's very hard not to panic constantly.
Madeline is having fun with one of her friends right now, and I can tell she is feeling well, because she was writing this morning and she is starting to read more again and she is laughing so much more. She also played her favorite game with me yesterday, "which would you rather." Usually, it can include a myriad of objects, from candy bars to pets, but yesterday it went like this. "Which would you rather, Scarlet Fever or Leukemia?" "Which would you rather, Leukemia or a brain tumor?" I know it's strange, but it actually seems healing.
This morning, we walked the hills at McLean, walked by the new town cemetery, and saw the housing development. Buttercup ran beside us almost the whole way, so when we went back into the car, she seemingly passed out from exhaustion. She later went with us to Julia's soccer game and had a circle of little siblings surround her and pamper her like the true princess that she aspires to be. Have a great weekend. Love, Chris
Consolidation Phase Chemo and Meds
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Here's the spreadsheet for the 8-9 week Consolidation phase of Madeline's chemotherapy. She is in her second week. Already her counts have come dramatically down and she will probably be hypo-cellular (too few cells) at the end of it like she was after the Induction phase.
The green represents the drugs that will be given at the Yawkey Outpatient Clinic, the blue, the critical care nurse and the orange, the drugs we have to give her. Since some meds she is only on for a few days a week, like Bactrim that prevents pneumonia, this helps me make sure she is getting the correct drugs on the correct day. Also, there are certain drugs that require an accompanying saline bolus because they can cause so much damage to her major organs. And other drugs that she might have a reaction to, like Peg Aspariginase. If I know when those are scheduled, we can be prepared to spend more time while she is getting the drugs and be more aware of concerning signs.
If everything goes well, that is if Madeline isn't hospitalized, her counts too low to allow for chemo, she has no major drug reactions that would require changing the therapy, then by January first she will be free from this phase and onto the next.
It has been about 2 months since the day of her diagnosis. The first 6-8 months are the most difficult part of this therapy. We had two weeks of respite between the Induction and Consolidation phases and it gives one amnesia to all the pain of the treatment cycle. Now we are back in it and making the best of it. Love, CA
