Wednesday, May 27, 2009 - Wow, it's been a while since I've written... sorry about that! Rest assured that it's simply because all is going really well. Mady has had a couple of lumbar punctures for her spinal doses of chemo, but they all go very quickly and painlessly now. She still take about a dozen pills before bed and a few each morning, but they don't seem to have too many adverse affects.
A couple of weeks ago we went to a family weekend at The Hole In The Wall Gang Camp in Connecticut. We had a great time on the climbing wall, crafts, hiking, eating, archery, etc. Each family had a dedicated counselor... ours was Maria (on the left in the photo), and we loved her! We even performed the Little Mermaid classic "A Part of That World" at the talent show in full costume (and I was Ariel)!
Mady is looking forward to going back for a second year at the camp next month...
-T
Day 628: Awash in a sea of normality (except for dressing up like merfolk)
Vegan Panacea
A few months ago, a friend gave us the book The China Study, a book that traces the correlation between meat and dairy laden diets (aka the typical American diet) and cancer and heart disease. The China Study turned my nutritional knowledge upside down. What I thought was a good healthy dinner, was not.
I read the book in 3 nights and became convinced that this would save my child, our family from cancer. I purchased all types of milk alternatives like soy, rice, almond and flavored soy milks to taste test them and decide as a family what would work best for us. My family are big milk drinkers. Trey goes through a few gallons a week on lattes. M and J and I drink 1% and go through a few gallons a week too. We changed from milk with dinner to orange juice, and soy milk tastes like cereal milk so that wasn't too difficult. I stopped cooking with cheeses, and as I use cheese to flavor everything, this took some effort. Since my children stopped eating any types of meat a year or so ago, the meat part wasn't all that difficult to give up (there was the occasional piece of bacon at Grandpa Dick and Nana Helen's).
After taking out a few vegan and vegetarian cookbooks from the library, and changing some of my favorite recipes to vegan, we have created a recipe file that really is starting to work. When we go out the girls will order pizza, or something with cheese. That's fine too. This change was not about being the perfect vegan. It was about changing my cooking so my children get most of their nutrients from plant based foods and less than 10% from milk/ cheese/ eggs/ meat products. And in this we have been successful.
When I read the book, I literally glowed with the thought that this would be the panacea for the cancer. Since then, I have read that vegetarians and vegans are less likely to have cancer, but not much less likely. The risk decreases by say 20-40%, and that's great, but it's not 100%. Last Thursday at clinic, Mady's doctor mentioned that a boy brought up on a vegan diet, never using a microwave, using glass containers and iron skillets has bone cancer. So although she rained on my panacea parade, I needed to hear it. This is one aspect of a many headed monster, most of which is unknown. So we will continue our vegetarianism, but not sweat the occasional ice cream. And I really hope it helps.
Here is a surprise favorite. A recipe for Harira, a lentil soup modified slightly from the book A Taste of Morocco by Robert Carrier.
4 tbs olive oil
1 large Spanish onion peeled and finely chopped.
generous 1/2 c lentils (I use canned lentils)
1/2 c chickpeas
1 tsp turmeric
1/2 tsp powdered cinnamon
1/4 tsp powdered ginger, saffron
1/2 diced sweet red pepper
salty and black pepper to taste
8 c water
generous 1/2 c rice
1 package active dried yeast
2 Tbsp chopped fresh green cilantro
4 Tbsp chopped flat leaf parsley
4 large ripe tomatoes, chopped (I have used a large can of chopped toms and it's still terrific)
lemon quarters (a must)
Saute the onion for 5 minutes, add the legumes, spices, red pepper, saute for a few more minutes, add the water, let simmer for 1-2 hours. Cook rice and add cooked rice to soup. Dilute yeast in a little of the soup broth and add to soup. Stir in cilantro, toms and parsley and cook for 15 min. Serve with lemon quarters.
Day 538: No news is good news...
Sunday, March 1, 2009 - Okay, it's been a while since our last post. Things are simply going well: Mady's staying healthy... no colds... no flu... no infections... Yes, no infections! The Great Toe operations were a success and thrice-daily soakings are a thing of the past. Life is good. Even her last two lumbar punctures have been quick and easy, which is amazing considering how difficult many of her earlier ones were...
Mady and Julia have both started practicing piano again and taking jazz piano from a very fun teacher. Both girls are getting good grades and enjoying school. We are reveling in normalcy right now...
Life is pretty good. :-)
Day 516: Great Toe Update
Saturday, February 7, 2009 - A week ago last Wednesday Mady had surgery on the last remaining side of her big toes (known scientifically as Great Toes, which I think is Latin or something). The operation didn't hurt because she was under general anesthetic, but afterward she said the pain was as bad as last time. Fortunately they gave her some pain killers that helped, although the first night she was up most of the night. She is a trooper!
Day 492: Hope for Treats
Tuesday, January 14, 2008 - Just checking in to tell you that all is going pretty well these days. Mady is staying healthy, with the exception of another toe infection. We're back into the constant soaking and wrapping routine.
You will recall that back in October she had surgery on three of the four "corners" of her two great toes. Why didn't they do the fourth corner while she was under general anesthesia and they had her toes all cleaned up and right there in front of them? Good question... The answer is that she had never had a problem with that particular location, and they simply don't like to do "preventative surgery."
So, she will be going back under the toe knife sometime in the couple of weeks and is taking lots of antibiotics in preparation for the surgery.
In other news, the rest of us are doing well.
Buttercup is getting even cuter (is that possible?) and is VERY excited about Barack Obama's upcoming inauguration a week from today...
(My appoligies to Shepard Fairley)
Day 476: Happy...
Sunday, December 28, 2008 - We've had a wonderful holiday seeing friends and family... and the greatest gift of all is that Mady is feeling great!
An Ellsion 18 Visit
Madeline was back at Ellison 18 this last week with a fever and the chills. Dr. Friedmann asked that we bring Mady into the emergency room when she heard that her initial fever went up past 101. Neutropenic again (330 anc), we stayed there for two nights. Her fever might have been caused by a virus or bacteria, but they have to assume it's a bacteria so they plied her with antibiotics for two days. Her fever went down, she read uninterrupted for many hours (who knew?) and we were given the OK to leave Tuesday. I'll admit to being very scared when she first starting having the chills and extremely relieved to see that it probably was viral. She's fine now, even her cold and cough seem to be going away. But there is another toenail infection (arrrgggghhh) requiring more foot baths but hopefully not surgery. Love, ca
Day 458: Over the Hump Day!
Wednesday, December 10, 2008 - I was floored when we first found out that Mady's chemo treatment for leukemia would last for 2 1/2 years. Then I learned from Dr. Friedmann that this duration offers the highest chances for complete cancer remission, based on decades of studies.
Hole in the Wall Gang Camp Parent Weekend
A few weeks ago, Trey and I went on a Hole in the Wall Gang sponsored weekend for parents with children who have life threatening illnesses. It was a very intense weekend, lots of art projects interpersed with some very big topics. We found out that parents in our situation have an 85% chance of divorce, much higher than the national average, and that we may take our anger out on the sibling who isn't sick (Julia agrees). We also found out that other people like to dance crazy too, and that humor can be a terrific release for shared pain (OK, we knew this- always a good thing to be reminded of it though). We met some truly wonderful people and feel more than ever so appreciative of the HITWGC and it's mission of 'serving the underserved.'
The Hole in the Wall Gang Camp is a great place to donate, and they have a wish list that could be tackled in small increments, so here is the link to THITWG wish list. http://www.holeinthewallgang.org/help/wish.asp
As for a gift to all of you, I have thought long and hard about what I could give you for the new year. A few months ago a friend of ours mentioned The Daily Show and since we don't have cable, I told him I didn't watch it. Lo' and Behold, it's on a website that minimizes commercials to a mere 15 seconds between skits. And Jon Stewart is....your new year's gift this year. Your welcome. It was really nothing. Love, ca
http://www.thedailyshow.com/
Day 448: A silly millimeter longer
Sunday, November 30, 2008 - Two posts ago, I wrote about Mady's pretty-horrific post-lumbar puncture headache. It lasted for over a week, and was debilitating since she had to remain near-horizontal to avoid pain and nausea. As I understand it, it was probably caused by slight spinal fluid leakage, which is apparently sometimes unavoidable after an LP.
Last Tuesday, she had another scheduled lumbar puncture, and we were all dreading the possibility of a second bad one. The doctors often have a tough time piercing Mady's spine and require multiple stabs, which kind of beats her up. Last week, they tried something a little different... changing the puncture location by a little more than a millimeter (these procedures are very precise I guess). Success!
This was probably the shortest LP that she's ever had. A faster procedure means less anesthesia and much quicker recovery. Plus, no post-LP headache and nausea this time! Let's hope the rest of them (she will get lots more LPs) go this well.
Mady, and all of us, had a happy and bountiful Thanksgiving with family down in Marion. We hope you did too!
-tkDay 427: Does Obama think Cancer Sucks?
Sunday, November 9, 2008 - After the historic presidential election five days ago, my friend Kathy from Austin sent me a link to a bunch of wonderful news photographs of the next President of the United States.
Although pediatric cancer research is not specifically mentioned in Obama's platform, cancer research is prominently part of his plan. In 2006, he signed the American Cancer Society's Congressional Cancer Promise (and McCain did not, btw), which contains a commitment to federal cancer research funding. I believe that his policies are much more likely to mean increased funding for children's cancer research.
Kathy also sent another great link, from which you can view day-after-the-election headlines from newspapers all over the world. Enjoy!
Day 426: Post-Lumbar Puncture Headache
Saturday, November 8, 2008 - HEADACHE following lumbar puncture was first described in 1898 by Dr. August Bier who stated, after his assis
tant Dr. Hildebrandt attempted to deliver a spinal anesthetic to him, "All these symptoms [pressure in the head and dizziness] disappeared as soon as I lay down horizontally, but they returned when I arose."
That 110-year-old passage pretty much describes Mady's week perfectly. Two Thursdays ago, she got one of her periodic lumbar punctures to add chemo to her spinal fluid and brain. It hasn't affected her this way in the past, but this time... horrible headaches and nausea that could only be calmed by staying horizontal.
So, she reads a lot, but has been unable to go to school for over a week now. Today has been better, and she was actually able to walk around a bit. I'm guessing that she'll be okay for school on Monday... it's been a tough week.
Day 413: Great Toes!
Sunday, October 26th, 2008 - Madeline had both her big toes (called ‘great toes’ by medical professionals) operated on last Monday to remove infections from the sides of her nails that were not going away. This began in early June with a slight ingrown toenail that would not get better.
Day 383: Paul Newman, 1925 - 2008
Sunday, September 26th, 2008 - Paul Newman passed away on Friday. What an amazing guy. Not only an iconographic movie star, he has given our family (and 100,000 other families who have children with life threatening illnesses) a very special camp started 20 years ago with the funds from Newman’s Own products, The Hole in the Wall Gang Camp (there are now 12 camps, some in other countries).
I dropped Madeline there early this summer for her week long visit. It’s such a cool place, anchored along a lake with fanciful ‘old west’ style buildings and a state of the art theater, a swimming pool (neutropenic people shouldn’t swim in lakes) and a fantastic gym. Picking her up a week later, I walked from the parking area to the dining facility, a large round building in the shape of a grain silo painted red, into a room filled with children and counselors who were singing and line dancing. It was completely overwhelming and I cried.
As we started to leave, counselors lined up to hug Madeline. Now Madeline at home is a very stoic person and she keeps things close to her around people she doesn’t know, so I was surprised, wait- amazed, at the number of counselors who would come up to her as we left to say “Oh, it’s the drama queen,”- introduce themselves to me and tell me how chatty she was, or dramatic, or just plain goofy. As we walked up the hill, she started to close up- return to normal, ask for her ipod.
A week later we saw the music therapist sponsored by The Hole in the Wall Gang Camp at MGH and she and Madeline immediately started singing camp songs, dancing and chatting about the camp. I told her about picking up Madeline and how she started to close up as we walked up the hill to the parking. She said that most parents have the same experience that I had when picking up their children. She said that the experience at the Camp is so singular and special that to talk about it lessens the vibrant memory because you can’t possibly put the joy into adequate words. She said that the Hole in the Wall Gang Camp is a place where people are loved unconditionally when they walk in the door. There is no status quo, there is just love for these children going through difficulties none of us can possibly imagine.
So, thank you Paul Newman for being the person that you were and giving so much to our world and to ours specifically, and thank-you, every volunteer at the Hole in the Wall Gang Camp for making life joyous for our children. We are blessed to have you in our lives. -ca
The photo above is from Butch Cassidy and the Sundance Kid, one of my favorite Paul Newman movies. I also love The Sting.
When we visited The Hole in the Wall Camp at an open house prior to Mady's acceptance into the camp, the director told me that Paul Newman loved to visit during the summer when the camp was in session. He would sit with the kids during meals and chat with them, and the staff knew not to make a big deal about him being there. The kids liked him very much, but most didn't really know who he was... except for the fact that most did recognize him from his picture on the salad dressing that they used at every meal!
Today's Boston Globe had a very nice feature about Paul Newman. The article ended like this:
Burial plans are unknown, although Newman expressed a desire to have his ashes strewn across the lake where he built the first Hole in the Wall Camp.
"I always admired the fish," he said. -tk
Day 378: Autumnal Equinox!
Monday, September 22, 2008 - I apologize for not writing in almost... a MONTH? Yikes! And my mom (Grandma Peggy) didn't even call (yet) to remind me to write! :-)
Frankly, things are going well. Mady is feeling good, and Julia gets out of her leg cast on Friday (did I mention that she broke her little toe a few weeks ago?). Construction on our house is pretty much complete and we're back in. Some minor things are missing... gutters, window screens, things like that... but in general it feels done, and it's nice to be settled into a normal routine.
Mady's new school
Mady has started high school... at a NEW SCHOOL! Last year, while Mady was undergoing the worst of her chemotherapy, we researched private schools. She had attended little of the 8th grade, but with the help of some home tutoring, she graduated from middle school. With her continuing chemo protocol we knew that the next two academic years could be challenging, and we thought that a smaller, more nurturing environment might be helpful. We looked a number of great schools in the area, but the favorite turned out to be very close to home... the Waldorf High School of Massachusetts Bay happens to be (literally) right across the street!
The teachers are wonderful and the classes are small. In fact, the entire 9th grade is 12 kids! Mady has really enjoyed the first few weeks of school... In addition to classes, she's involved in drama club, soccer, jazz band, and just got back from a 3-day service camping trip in northern New York where the the entire 9th and 10th grade class helped build a trail.
The Waldorf School's goal is to awaken in their students:
- Clear, informed, and heartfelt thinking;
- Creativity and inquiry;
- Compassion for and interest in the world and all humanity;
- A well-founded belief in their capacities and the will to use them.
Nice. So far, it seems to be a good fit for Mady. I asked her the other day if the kids at school know that she has leukemia. She said that some of her friends do, but it's not a big deal. She's mostly just a normal 9th grader! :-)
One year diagnosis anniversary
As you can tell by scrolling down to the bottom of the blog, September 10th marked the one year "anniversary" of the worst day of our lives. We all remember the moment sooo clearly. The question of the day was How this could happen to our happy and healthy daughter? A year later, she still has a long way to go in her leukemia battle, but she is still our happy daughter... her spirit is so strong. And her strength (and her hair) is returning! A year into the treatment, we know that she will win the battle. Thank you to the many friends and family who had Mady in their thoughts on the 10th.
When I came home from work on the 10th Mady asked me if I knew what day it was. I said with a smile, "Sure... it's Wednesday." She smiled back and said "Yeah," and gave me a big hug.
Day 354: Family Camp, almost one year later
Friday, August 29, 2008 - Last year during Family Camp, Madeline was very tired and had a fever every night. I can't look back at those days before her diagnosis without tears and a great deal of pain. Even though she was at her lowest last year, she wanted to return to family camp this year. We brought our friends Lou and June and their children Emily and Maria from Seattle with us for the first few days since they were visiting east. We all had a wonderful time.
Madeline didn't do a lot this year. Family Camp requires very little. You can participate in all of the available activities or not. She did get up and sing 
'Black Socks" with us at the talent show, and she made it to riflery almost daily, the ropes for the 'zip line' and the arts and crafts a few times and was always up for a game of Common Culture at night. But mostly she just hung out reading People magazines with her feet in hot water (she has a small infection on her toe that just seems to want to stay). So many people said kind things welcoming her back, and to us too. By the way, that's Mady (wearing a red top) about 70 feet up the trees getting ready to launch herself off onto the Zip Line... a Family Camp favorite on the high ropes course.
One of our neighbors at Family camp runs the Connecticut Challenge, a charity bike riding event where all of the money supports survivorship clinics for adults and children at the Yale Cancer Center. Their daughter, Sammee, rode for Mady and made a whopping $2,100. Sammee was shy about telling us that she rode for Mady but her Mom Kim let us know. Thank-you Sammee!!
It's an amazing feeling when people join in to support someone you love. I am constantly amazed by the people who 'show-up' for us. Love, ca
Day 335: Mady's Make A Wish
Saturday, August 9, 2008 - Somewhere, Mady had heard about about a place called Atlantis, where they have underwater rooms and people swim with dolphins. When Jen and Chris, Wish-Granters from the Make A Wish Foundation, met with us this spring and asked Mady what her wish might be, she had a number of ideas... but she kept coming back to Atlantis.
No, that's not me wearing a tie in the photo... it's Bob, the very-friendly limo driver. Mady had also considered Australia for her wish, but her docs said that was way too far away in case of a medical problem. The Bahamas is actually quite close (sandwiched between Florida and Cuba), so after a short plane ride we arrived at Atlantis and found our Coral Tower suite... complete with a giant bouquet of flowers for Mady.
The place was amazing. What I noticed most throughout our stay was the attention to detail. The developers hired true artists and sculptors to make everything look, well, like it had been underwater for a few thousand years. Much of the resort is dominated by the world's largest saltwater aquarium, which is visible all over the resort through giant sheets of 6" thick glass.
We're standing in front of one of the aquarium windows in this photo. Atlantis is particularly famous for The Dig, an "underwater" archaeological exploration that showcases over 50,000 aquatic creatures within the backdrop of underwater Atlantean ruins... it was amazing, and we walked through it every chance we got.
Water is featured everywhere. We loved The Current, a man-made river (basically a giant swimming pool designed as a mile-long loop) through which you float on tubes and traverse the entire resort, encountering rapids, underground tunnels, giant waves in a winding slot canyon, and even an occasional long drop in a tower slide! This was Mady's favorite thing, and we floated many, many loops!
The food was also sublime, and we ate well at every meal, including a morning buffet breakfast at The Marketplace that had, well, pretty much anything you can possibly imagine eating for breakfast. Mmmmmm... breakfast...
The interiors of the resort were unbelievable and full of amazing sculpture and other art commissioned specifically for this resort.
We were particularly impressed by several examples of glass sculpture by Dale Chihuly, a northwest glass artist whose work we have always loved. This swirling red/yellow piece in the casino was especially great.
Mady and Julia both had spa treatments and got beautiful manicure/pedicures, and we actually spent a little time in the very-blue water on one of the most beautiful beaches you can possibly imagine.
An evening view from our balcony...
Oh, and Mady did get a chance to frolic with, and actually KISS, a dolphin or two! (And yes, I know that's not a dolphin in the photo above!) We do have some frolicking-with-dolphins photos, but I haven't been able to scan them digitally yet. Stand by for more pics soon.
Thank you Jen, Chris, and the Make a Wish Foundation! The trip you put together was an experience of a lifetime, and Mady loved it! We hope to go back in a few years to celebrate when she becomes completely cancer-free!
Day 315: Didn't you say something about a picture of Mady's hair?
Sunday, July 20th, 2008 - I apologize for not posting in quite some time. The construction upheaval at our house has disrupted our circadian blogging rhythm. To those of you who check this site regularly, thanks for sticking with us!
In the last post, I promised a picture of Mady's newly-growing-in hair. It's been hard to get because I really don't see her often since I'm still here in Belmont and my family has wisely opted to live away from the construction zone. Plus, our only working camera has been packed away in our effort to protect our belongings from construction dust. Well, I finally found the camera and I saw Mady this weekend, and here's the hair shot, taken about 4 hours ago:
Right now, if memory serves me correctly, it looks almost exactly the same as the day she was born (minus the coating of amniotic fluid, of course). (perhaps I can find that picture to post for comparison... hehe)
It's sooo cute, and although hair sometimes might fall back out during the Maintenance Phase, it typically stays in and keeps growing. I believe she hasn't worn her wig in weeks.
Her cough is completely gone, by the way, and last Friday she finally had a successful lumbar puncture (for the required periodic dose of chemo into her spinal chord and brain). The last two times the doctors had attempted it they were unable to penetrate her apparently-titanium-encased spine. I was about to offer my diamond-encrusted high-speed drill bit set, but it wasn't needed. :-)
All is going well. Thanks again for all the well-wishes, prayers, and positive thoughts directed our way... They seem to be working. --t
Day 295: I want it long, straight, curly, fuzzy...
...Snaggy, shaggy, ratty, matty
Oily, greasy, fleecy, shining
Gleaming, steaming, flaxen, waxen
Knotted, polka-dotted;
Twisted, beaded, braided
Powdered, flowered, and confettied
Bangled, tangled, spangled and spaghettied!
O-oh, Say can you see; my eyes if you can,
Then my hair's too short!
Down to here, down to there,
Down to where, down to there;
It stops by itself!
doo doo doo doo doot-doot doo doo doot
Monday, June 30, 2008 - Well, I guess we needed something else going on in our lives... We've just hired a local contractor, Dan, to do some of the big projects that have been hanging over our heads for, well, years! Actually, the timing is pretty good since Chris and and the girls can live with her dad for a few weeks and we can keep Mady away from the construction dust. Dan had a unusual window of opportunity starting immediately, so... it has begun! We're having the front porch completed (it was 1/2 done when Mady was diagnosed last year and we pulled the construction plug), a new roof put on (we've been having leaking problems for a few years), and a new furnace/boiler put in (our 30-year-old one is highly inefficient and very nearly dead). Whew.
We've been trying to make things dust-proof by boxing and bagging, and it feels like we're getting ready to move or something. The cats and I will be staying here at night, sleeping among the boxes and bags (if Chris doesn't pack all my stuff up too).
Hey! Mady's hair is starting to grow back in, and it's really exciting! I'm going to try to get a picture of her to add to this blog entry, so check back in again soon. It's fuzzy, but starting to look very cute! Will it be long enough for the casting call of HAIR?... Not sure... :-)
On the down side, she's had a persistent cough for the past two weeks. A really BAD cough. The doctors gave her an antibiotic IV dose last week, and she's been taking oral anti-b's too, but it's still there. Could take 7 to 10 days, they said, and she's off her chemo until she's better. Apparently, this is one of those those things that will delay her final chemo completion date (see the Day 281 blog entry).
We're monitoring her for fever, of course, but in the meantime the world's loudest and most violent coughing continues, along with the comparatively soothing sounds of wood sawing and nail pounding...
-t
Day 282: Cool!
Tuesday, June 17, 2008 - I asked Mady what she thought about the Boston Celtics winning their first NBA championship in 21 years, and she said "Cool!"
Chris brought her back from The Hole in the Wall Gang Camp this evening so she could attend her 8th grade graduation party. She had a fun time, and Chris will take her back early tomorrow morning... probably in time for breakfast!
She's only been there a day, but she says she's having a really fun time... thank you Paul Newman.
Day 281: 635 days remaining (30% done!)
Monday, June 16, 2008 - Last month, Mady entered the Maintenance 1 phase of her chemo protocol. There are 8 Maintenance phases, each 12 weeks long (not to be confused with a single 96-week Maintenance uber-phase, for some reason).
During the Maintenance phases, she will get:
- a daily oral dose of Mercaptopurine,
- a weekly oral dose of Methotrexate,
- five oral doses a month of Dexamethazone, and
- one intravenous dose a month of Vincristine.
I believe that she will also get periodic lumbar punctures for testing her spinal fluid and for administering prophylactic chemo to her brain. Of course she will also continue to get regular blood draws to monitor her ANC, white blood cells, red blood cells, and platelet count--and she'll occasionally get "topped off" with units of whole blood or platelets when she's low.
If I've done my math correctly (and she doesn't have any events which delay portions of her treatment), she will take her last dose of chemo (a lowly Mercaptopurine pill) before she goes to bed on the evening of Thursday, March 11, 2010. Mark your calendars!
When that happens, this blog will read "Day 916," Mady will have celebrated her 16th birthday just a little over two months earlier, and the Celtics will be looking good to win their third consecutive NBA championship. It will be a truly sweet to be finished with this long, arduous, and painful journey. Completely done, and leukemia-free.
By the way, Mady is at The Hole in the Wall Gang Camp this week!
Day 278: Celebrating Mady
Friday, June 13, 2008 - Madeline had some close friends and family over last week to celebrate the beginning of Maintenance, a less painful chemotherapy protocol that she will be on for the next year and a half. Some of the girls had made her a quilt. (Thank you Dara.) Mr. MacDonald, Mady's former elementary school principal, donated his ubiquitous shirt and tie to the project, and they can be seen on the right-hand side of the quilt. Her white and green striped soccer uniform is in the upper left corner. Mady has been going to school daily, and last week was her first full week of school for the 8th grade. This week she had to miss Thursday for a procedure, and unfortunately, they were unable to do the lumbar puncture, even the very capable and nimble fingered Dr. Friedmann who has always had easy success with Mady was not able to get into her spine, so Mady is getting a break from this month's LP. They will try again next month and if they have trouble again, they will use either sonogram or x-ray for guidance. Mady now has a regimen to stretch three times a day to open up her spine a little (my orders, the doctors say that it probably won't do anything, but we might as well try.) The anaesthesiologist who also tried was truly flummoxed.
Today is Mady's last day of school at the Middle School as she will attend the Hole in the Wall Gang Camp next week. However, we will bring her back for one day on Tuesday for the 8th grade party... (priorities).
love. ca
Day 261: "I know it was you Fredo. You broke my heart. You broke my heart."
Tuesday, May 27, 2008 - Well, it's been a week since Mady's old port broke off and circulated through her heart, coming to rest on top of her lung... to me the most bizarre and scary incident that has occurred since the initial leukemia diagnosis.
How does a 3 1/2" piece of a port break off? No clue. The tubing is silicone... a practically indestructible material in my experience. How does it make it completely through her heart without getting hung up on a ventricle or the inner-heart wall? I have no idea. But the biggest mystery to me is how a doctor was able to guide a catheter through her thigh, up to her chest, into her heart and out the other side, down to the top of her lung where the broken-off tube was lodged. Then, he had to enclose at least half of the broken tube, tighten the catheter's grip on it, and slowly pull it back out through her heart, down her side, and out her thigh. He guided the catheter entirely by watching a real-time x-ray, and he did it in 13 1/2 minutes. Whew.
The "10% chance" that going in or out of her heart might have caused an arrhythmia that could have required a permanent pacemaker was particularly frightening. And how do they come up with 10%? How often does this happen to a 14-year-old girl that would allow them to gather enough data to determine accurate probabilities? I think the answer is that 79% of all statistics are made up on the spot, of course. There was a small chance of a particularly bad outcome... and we're so thankful that it turned out okay.
Mady now has a new port in a more traditional location just below her 
right breastbone (the old one was centered on her chest at her sternum). She told us the other day that she was thinking about naming her new port (we suggested Newport), and said her old port was now "dead to me"... and I'm pretty sure that's part of a classic quote from The Godfather Part II, in which Michael Corleone delivers the line to Fredo, the older brother who betrayed him.
Chris thinks I'm crazy, but I'm still hoping to get that 3 1/2" piece of the wayward port to keep for posterity. How many people can hold a thing that has passed through their heart... twice? I'm hoping I can procure it without having to find a horse's head... -tk
Day 255: Fishing in Vein
Wednesday, May 21, 2008 - I started to worry the night before when I was talking to Trey and he said "Do they go through the heart to get to the broken piece in the pulmonary artery? " Hmmm, I thought, it sounded so easy and very positive when it was explained to me, "I don't know?" Those words and the idea of a surgery tied me to a restless night of sleep. Madeline was fine. She woke herself up at 3 am to eat a peanut butter sandwich so she wouldn't feel sick the next day, then slept until 9 (a rarity), then wrapped her arm to take a shower. Her arm had a line in it from the Mondays procedure when they found her existing port unusable.
I had a bit of a panic attack when the fellow (the fellows are new doctors who study for a year in a specific area of medicine and are typically very young) in charge of the surgery explained the risks. He mentioned that yes, they do go through the heart, and he thought there was a 50% chance that they could extract the piece and otherwise it would stay there and Mady would have to have x-rays taken a few times a year to make sure it wasn't causing problems. WHATTTTT!!! Well, odds are always negotiable, and the previous doctor, when asked, put the number much higher. The fellow also mentioned that Madeline might need a pacemaker if the procedure caused an arrhythmia in her heart that they couldn't correct, although it was a small chance. They give you all of the fine print in large bold strokes and you sign saying you understand the consequences right before surgery or the use of anaesthesia. And we gladly sign considering the options.
My sister came up to sit with me while waiting for Madeline, and within an hour Dr. Wicky came out to tell us that they had successfully removed the piece of port and it would take another hour and a half to place the new port, and finally, remove the old port. We met Madeline down in post-op in a very full recovery room, and escorted her upstairs to Ellison 18 where we stayed the night. She is doing just fine, although this port goes into her jugular vein and it's causing her a great deal of pain right now.
I asked on Monday how many i-tunes were all the pokes worth (they had to dig a needle and search for a vein 5 times). She asked me what I thought it was worth and I answered that I know I would low-ball it since I hadn't gone through the pain, so she should tell me.
After her new port placement, removal of the old port and her 'fishing in vein' expedition, I asked her the same question. The number was much higher. We'll gladly pay it. She is amazing. She has gone through so much and she is so strong and we are so proud of her. Love. Chris
"Well, It could have been much worse"
Mady's reply when asked by Dr. Friedmann what she thought about the news that 3 1/2" of tubing from her central port broke off, went through her heart and landed in her pulmonary artery. Seeing it on the X-ray gave me a jolt of panic, then the doctor told us it wasn't an emergency, that they would go through her femoral artery at the top of her hip to extract the piece of tubing. Since she would be under anaesthesia, they would then remove the existing port and place a new port in a different location. "It happens, but it's not typical." Love, Chris
Day 247: Good News Bad News
incides with her eighth grade celebration night, and we have been given permission to pull her out of camp for the night in question. She is very excited, as are we all. And ... Madeline does show classic signs of osteonecrosis in her tibia bones (large bones on the lower part of the leg) from the dexamethasone. This changes her protocol temporarily to exclude that drug during maintenance (5x per month) for the next few months until her bones show signs of recovery.We are all doing very well right now. Everyone seems particularly positive, perhaps it's spring in full force in New England, the bowers of flowering trees leaving all shades of pink on the ground, rhodie's and azaleas getting ready to burst; per
haps its the nightly round of 4 square, played with great enthusiasm at our home, Buttercup not quite understanding the rules; or perhaps it's the end of Madeline's most difficult months of treatment. Whatever the cause, we are having some much appreciated good weeks. Madeline made potato soup last night, bouillabaisse tonight, both delicious, and we made it to Crane's Beach for Mothers day. Day 236: Delayed Intensification almost over
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 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
.jpg)
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!
.jpg)
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
.jpg)
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
Day 59: 1,069 doses of chemo...
Wednesday, November 7, 2007 - Shortly after we learned about Madeline's leukemia, we were given the book, a three-quarter-inch thick document, to quickly read, understand (?) and sign--granting permission for our daughter to be given very powerful drugs. The information spelled out her chemotherapy protocol and listed all of the medications involved, along with their potential side-effects, which were divided into three groups: Very Likely (these were no big deal), Likely (these caused some concern), and Unlikely but Possible (these were very very bad).
Each section in the book dealt with a particular individual chemo drug and its schedule. It was difficult to figure out what combination of meds Mady would be getting on any particular day. If we wanted to find out what she's getting on Day 9 of the Consolidation Phase (that's today, by the way), we had to look at each of the sections to see if that drug had day 9 listed. As we looked, we'd see all the side-effect disclaimers again--this was both unavoidable and unnecessarily scary (these drugs are dangerous, we got it).
A while back I made this chart in Excel (click on the chart to enlarge it). It shows all the phases down the left and all the chemo drugs along the top. Green means it's given orally (PO), Orange is intravenous (IV), and Red is an intra-muscular (IM) shot (i.e. the dreaded sub-cutaneous asparaginage). As you read across the line of each phase, the numbers tell you what day of the phase she gets that particular drug.
Mady thought the chart was interesting, but she took most of it in stride. What really caught her attention was the chemo she absolutely hates, the PEG-Asparaginase, which she will get on Day 15 (which figures to be November 13 as long as her ANC counts stay high enough for chemo to be administered) and Day 43 (December 11) of the current Consolidation phase. She was the one who suggested that it be colored red on the chart.
On a whim I summed the columns and found that during the 120-week duration of her treatment, she will get 1,069 doses of chemotherapy meds. That doesn't include all the other stuff: blood thinner, insulin, anti-nausea drugs, pain relief medications, calcium and other supplements, and more.
It sounds like a lot of drugs, but it's sure worth it for an 80 to 85% cancer cure rate.
Day 57: Mady and the Thousand Paper Cranes
Monday, November 5, 2007 - Thousand Origami Cranes (千羽鶴, Senbazuru) is a group of one thousand origami paper cranes held together by strings (click here to learn how to make a crane).
An ancient Japanese legend promises that anyone who folds a thousand origami cranes will be granted a wish by a crane, such as long life or recovery from illness or injury.
The legend has become well known through the story of Sadako Sasaki, a Japanese girl who lived near Hiroshima during World War II. As a result of radiation from the atomic bombing of her town she contracted leukemia. Her story is told in the the book Sadako and the Thousand Paper Cranes.
Sadako didn't have time to finish hers, but Mady now has a thousand origami cranes (pictured above). They were folded for her by Ayumi, a grade-school friend (who moved to California several years ago), along with her family and several close Japanese friends.
Traditionally, to be blessed by one thousand cranes is fortunate beyond belief. Mady felt great this weekend... coincidence? I don't think so!
Day 54: 4588 ANC 24.5 HCT
Friday, November 2, 2007 - Mary-Jo called this morning to let us know the results of Mady's blood draw yesterday. A whopping 6200 white blood cell count with 74% neutrophils. Those numbers seemed too high, but Mary-Jo assured us that they tell a good tale of Mady's bone marrow recovery. Her HCT (hematocrit) is stable, so no blood transfusions are required this week. Knowing that her counts will start to drop next week, we are planning a busy weekend. Love to all. ca.
Day 53: All Hallows Day
Thursday, November 1, 2007 - It's the day after "All Hallows Eve," and we all survived pretty well. Julia and Madeline went trick or treating with their friends and brought home a huge amount (two pillowcases full) of candy.
I usually make our front porch VERY scary (spooky music, black lights, severed body parts, and me--pretending to be a zombie mannequin then jumping up with a scream), but this year I toned it down. It's hard to be horribly frightening when you're holding a cute puppy in your arm. Some of my regular customers missed the big scare, but I saw a lot of happy younger kids--in past years I'd either have made them cry or they would've avoided our house all together.
After her full day of surgery and chemo on Tuesday, I was amazed that Mady had the energy to both go to school and go out halloweening... but then again I've always found her to be pretty amazing.
Oh yeah, somebody asked me last night-- Mady's ANC is 2,000 and climbing. She's a neutrophil-producing machine. It's almost scary...
Day 52: OR Yesterday, School Today
Wednesday, October 31, 2007 - Yesterday Madeline went to the OR to get her port and remove her picc line. Although she only had a sniffle, we decided to keep her out of school on Monday to make sure she was healthy enough to have surgery. Dr. Doody performed the surgery, first on the docket for the pediatric surgeries. He worked with an intern whom we had met before on his earlier rotation through Ellison 18, 2 nurses and 2 anaesthesiologists, one who regaled her with stories of beaches in South Africa where one can swim with penguins. They drugged her in front of me, I kissed her and left the surgery suite.
Following their surgery for the port, Dr. Friedmann gave her a LP (lumbar puncture) to administer methotextrate to her brain. They plied her with Zophran for nausea, and gave her some Tylenol, and she slept off the effects of the drugs for an hour before ordering me on a quest for lunch. After that, I wheeled her over to the Yawkey clinic for her first out-patient treatment there. We saw many Hem-Oc faces that we had met on Ellison 18 and a few new faces including Dr. Friedmann's assistant Mary Jo Gonzoles and Madeline's nurse, Suzanne Rose, who were both very kind.
Madeline spent the afternoon reading a book in a small room while being given all of her medications, with a dictum to drink at least 1 quart before bedtime (she almost made it) and we arrived home at 6 pm. I went to CVS for all of her prescriptions ( I am now starting to keep a chart so I don't forget anything). If the surgery or her recovery had taken too long, she was slated for a stay in Ellison 18 for the night, no great shakes, but something we wanted to avoid anyway. We know there will be times when that will be required.
Unless she needs some RBC's (red blood cells), Madeline doesn't have to return to the Yawkey Clinic until next Tuesday as this week she will receive her chemo drugs at home from the critical care nurse.
Today she went off to school. She is balding now and still does not want to wear a scarf or wig or hat. We are letting her decide if she feels well enough to go to school, and after some diversions, she decided she could make it on time today if she hurried. Trey dropped her off just about 8am.
I receive many questions asking about the danger of infections while she is at school, and also about the puppy. People wonder about the protocol around keeping Madeline infection free. I have to admit, I wonder if we are making the right choices too. Our doctor assures us that school and the puppy are fine. She says that Madeline must use a hand sanitizer before she eats and that will be enough to protect her. Madeline also gets off 'dog duty' for the duration of her therapy. She says that Madeline is fine to go to school, when she feels well enough to do so. There may be times when her counts are too low to allow her to go as well. Love, ca
Day 51: The Port Authority
Tuesday, October 30, 2007 - We woke Mady up at 5:30 this morning. She and Chris headed to MGH before dawn to begin the Consolidation phase of her chemotherapy. After 10 wonderful days of near-normal life, treatment starts again.
Today, she'll have her new port or "port-a-cath" inserted in her chest wall to make chemotherapy easier and more comfortable. This will be done in a simple, out patient procedure that requires general anesthesia.
The port is about the size of a quarter, only thicker, and will show only as a bump underneath the skin. There are several benefits to having a port, in lieu of the picc line that it replaces including:
* It's under the skin so is more sterile than the picc line.
* She will be able to swim, bathe, and play sports.
* The port replaces the two picc line tubes that have been dangling out of her right arm for 49 days. Because they went through the skin, these required many painfull sterile dressing changes and had to be covered with plastic whenever she took a shower. She is very happy to be rid of her picc lines!
* The new port requires no search in vain for a vein every time she receives chemo. A special needle fits right into the port, so all you feel is the stick—not the poking, prodding, and false tries in your arm. The nurse will numb her skin first with ice and a lidocaine based cream, to lessen any feeling at all.
* The medication goes right into the main blood supply entering the heart, so it can be sent quickly and efficiently to all parts of the body.
* Some types of chemotherapy can be very uncomfortable if injected into a vein just under her skin. The port avoids this potential discomfort.
* Getting blood for blood tests can usually be done through the port, decreasing the number of times she needs to have a vein "stuck."
After getting her port, Mady will get a spinal tap, and four different chemos on this first day of the eight-week Consolidation phase: Cyclophosphamide, Cytarabine, Mercaptopurine, and Methotrexate.
Whew, it's going to be a long day, but if all goes well she'll be back home with her new port tonight. Keep those prayers and positive thoughts headed her way...
Day 49: A new member of the family
Sunday, October 28, 2007 - This is the newest addition to our household. In celebration of the Red Sox World Series Championship, I wanted to name her Jacoby or Big Papi, but I was overuled. Meet Buttercup, born August 20, to Chocolate (her Cocker Spaniel mom) and Pepperoni (her Poodle dad).
Are we crazy to get a dog just as Mady begins her 2 1/2 year leukemia treatment? We don't think so... Mady's illness means we'll probably all be at home more, and her oncologist said it was absolutely okay. We've been talking about getting a dog for years and we recently found a breeder we like who currently has a bunch of lovely female Cockapoo puppies. We visited today, and fell in love.
I have a feeling that a cuddly puppy might be very thereputic and could help with the stimulation of those pesky Neutrophil (another name I suggested for the puppy) cells.
Why is she named Buttercup and not, say, Papelbon? That's a good question...
CONGRATULATIONS RED SOX!
2007 World Series Champions
Day 48: Leukemia + Back to School
Saturday, October 27, 2007 - When Mady’s pediatrician called me the afternoon we learned about a “problem” with her blood (see the first post in this blog), I was still thinking that she had a virus of some kind. The doctor said a virus was possible, but it also could be (pause) leukemia. I had heard of leukemia, of course, but I really knew nothing about it. I remember asking him “If we had to hope for a virus or leukemia, which one would it be?” After a moment of what I now suppose was stunned silence, he said we’d certainly hope for something viral.
As you might expect, I now know a lot more about this form of cancer. From time to time, I plan to list some of the information that I didn’t know back then…
What are the different types of leukemia?
There are four main types: ALL, AML, CLL, CML. The first two letters of each of their acronyms are based on the combination of two different classifications, Speed of Progression and Types of Cells Affected.
Speed of Progression
The first type of classification is by how fast the leukemia progresses:
Acute leukemia. This is what Mady has. It began with one or a few white blood cells that had a lost or damaged DNA sequence. These cells remained immature in what's known as a “blast” form, but maintained the ability to multiply. Because they didn't mature and then die as normal cells do, they accumulated and began to interfere with functions of vital organs. Eventually, they overwhelmed the production of healthy cells. They multiplied rapidly, so the disease worsened quickly. Acute leukemia requires aggressive treatment, and if left untreated life expectancy is about 3 months. In Mady’s case, Dr. Friedmann estimated that her leukemia started around the beginning of the summer, and without treatment she would have lived just a few more weeks.
Chronic leukemia. This type of leukemia involves more mature blood cells. These blood cells replicate or accumulate more slowly and can function normally for a period of time. Some forms of chronic leukemia produce no signs or symptoms and can go unnoticed or undiagnosed for years. This type most often affects adults.
Types of Cells Affected
The second type of classification is by type of white blood cell affected:
Lymphocytic (aka Lymphoblastic) leukemia. This is also what Mady has. This type of leukemia affects her lymphoid cells or lymphocytes (a type of white blood cell in her bone marrow), which form lymphoid or lymphatic tissue. This tissue is the main component of the immune system and is found in various places throughout Mady’s body, including her lymph nodes, spleen and tonsils.
Myelogenous leukemia. This type of leukemia affects the myeloid cells. The myeloid cell line includes cells that later develop into red blood cells, white blood cells and platelet-producing cells. This type is more common and much more difficult to cure.
How common is Mady's acute lymphocytic leukemia (ALL)?
In 2007 there will be about 44,240 new cases of all types of leukemia in the United States. 13,500 of these will be AML, and Mady is one of about 5,200 people who will be diagnosed with ALL this year.
The average person's lifetime risk of getting ALL is about 1 in 1,000, which is about the same as the lifetime risk of either drowning or dying in a motorcycle accident.
+
By the way, Mady finally got to go back to school on Friday. She wore neither wig nor hat, had her two IV picc lines hanging out of her arm, sported her LIVESTRONG and CANCER SUCKS bracelets, and had a great day. Her classmates were very welcoming, and everything went well. After school Mady visited some her favorite teachers with a good friend, then headed to another friend's house for a small Halloween party. Later in the evening we took an oncologist-approved trip into Boston to see the wonderful musical Wicked (during which she reluctantly wore a surgical mask). Whew! Amazingly, she wanted to catch the second half of another friend's sleepover party after the show, but we drew the line there.
This morning Mady was the first one up, and once again making Madycakes (TM) for all of us...
CureSearch
A number of people have asked about donations to fund cancer cures, and we have already mentioned the Leukemia and Lymphoma Society. I'm not sure how much of their funding goes toward research so I wanted to promote CureSearch, an organization that funds the research arm of the Childrens Oncology Group, a group of 240+/- hospitals, including MGH, working together on treatments for childhood cancers. The organization gets a whopping 4/4 stars on charitynavigator. xo ca
CureSearch link - Click HERE
CureSearch Research link - Click HERE
Charity Navigator link - Click HERE
Day 47: Mady's return to school
This meeting takes less time than the one provided by outsiders to the school and has less information, alleviating the need to have guidance back-up when children start to think about too detailed information concerning a serious diagnosis.
This allows a positive atmosphere for her return without stressing the scary details of the cancer diagnosis. Yesterday afternoon, the meeting took place and this morning Mady just left the house with Ginny and Sarah to attend her first day of school in two months. No PANcakes this morning. Just a bowl of cereal and lots of excitement.
Mady's doctor was really pushing for Madeline to attend school and normalize her life as much as possible while she feels her best this week since she will start her next round of chemo next Tuesday. It ended up taking a little longer than anticipated to get her into school, but I think in the end it worked out perfectly. Having Friday as her first day gives her the weekend to recuperate. We may even go to her soccer game tomorrow morning, although I doubt she will play.
And there is rumor of a dog. xo, --ca
Madycakes
These are the pancakes that Mady has made from scratch every morning since she came back from the hospital last Saturday. They look like neutrophils, and of course we credit them with her currently-soaring ANC levels...
Mix together:
1 cup cake flour
1 teaspoon sugar
1/2 teaspoon salt
3/4 teaspoon double-acting baking powder
1/2 teaspoon baking soda
Add:
1 cup buttermilk
2 tablespoons melted butter
Milk as required if the batter seems too thick
1 banana, sliced
Mix everything together (but leave the batter slightly lumpy) and add enough banana slices so that each 4" diameter Madycake gets three slices (like a neutrophil with its distinctive tri-lobed n
ucleus). Cook on a lightly-buttered griddle, turn when bubbles appear on the top surface, but before they break. Cook until golden brown and serve with real maple syrup (or honey). Mmmm...
By the way, Mady has been cleared to go to school on Friday and she's very excited.
Day 46: School? Maybe
Thursday, October 25, 2007 - Well, after getting her 1,400 ANC Mady had planned to go to school this morning, but yesterday afternoon the school informed Chris that Mady needed a note from her doctor saying that she is medically able to return to school. Plus, the nurse needs to physically meet with Chris before Mady is allowed back. Dr. Friedmann thinks that Mady should absolutely go to school if her counts are good (they are) and she feels up to it energy-wise (she does), but the permission slip and meeting took us by surprise. Hopefully, Mady will get to go in after lunch today.
As I sit here writing this, I'm eating a Mady-cake, one of her now-famous egg-less buttermilk pancakes with banana slices baked-in. A friend brought her some organic maple syrup last night... yum. Truly the best pancakes I've ever tasted (even better when they're smothered in the warm afterglow of last night's decisive Red Sox victory in Game 1 of the World Series).
Day 43: Mmmmmmmm
Monday, October 22, 2007 - Mady's pancakes again, friends over after school, dinner together at the dining table, mild sibling bickering... all very pre-leukemia-ish. It's nice to have this "recovery" week before the next round of chemotherapy.
A CCS nurse came over and took a blood draw for the ANC count this morning, but we've not yet heard (as of 11:15 pm) what it was. No news is good news? Probably.
Instead of worrying about counts, I'll just think about tomorrow morning's pancakes...
Day 42: A Normal Day
Sunday, October 21, 2007 - What a beautiful day! Sunny, in the mid-70's, and did I mention... Mady's home from the hospital!
Mady made pancakes again today, and we did one of our favorite things: a family hike around Turtle Pond at Habitat here in Belmont. We even checked on our Turtle Pond Letterbox (don't know about letterboxing? Click HERE), and it was in good shape.
Tomorrow Mady gets another ANC test, but today we didn't worry about it. In other words, we had a perfectly normal day, and it was wonderful.
Not much water. and NO turtles, in Turtle Pond today...
Day 41: Welcome Home Mady!
Saturday, October 20, 2007 - This was our first day home as a family in 40 days, and it was lovely. Madeline woke up first, of course, and made pancakes... from scratch!
We have bottles of Purell all over our very clean house, and the HEPA air filter unit hums quietly in Mady's room.
It does seem a little odd that Mady's vitals are not being taken four times a day. What is her ANC today? We have no idea. We have obsessed over her "counts" each day for the past two weeks, and now we just don't know. Is it over 200? We trust that it is, but we won't find out for a few days I guess... and that's a little scary. (Chris says she thinks it's okay that we don't know, and I think she's probably right)
We picked up a couple of prescriptions at CVS today, and they looked different from her hospital meds... but we had no nurse to ask about it. Chris called MGH, asked for the 18th floor of Ellison, and found one of the many nurses who had been treating Mady. She gladly answered our questions... whew! (One of the benefits of having lived on the 18th floor for so long) She told us that Ellison 1816 is alread filled. I hope the new occupant, as we did, finds the room to be filled with positive energy and good karma.
Later in the evening we met Michelle, one of the nurses from Critical Care Systems that will be coming to the house several times a week to check Mady's vital signs, do blood draws for ANC checks, and administer outpatient meds as required. She's really nice, and it turns out that she's the aunt of one of Mady's friends here in Belmont. Small world.
Good friends made the wonderful banner in the photo above. Can you spot Whiskers welcoming Mady too? Click on the photo to enlarge it...
Day 40: YAAAAAAAHHHOOOOOOOOO
ANC is 189 today. They are letting us go home. Madeline will have a week to recuperate and then she starts again.
Day 39: Three ANC haikus
One twenty today.
Doctors think: home tomorrow.
(We've heard that before)
Mady's doctors say
They see 'baby' neutrophils
That give them much hope.
I think her neutrophils
Want to stay and help... so they
Avoid the blood draw.
Day 37: A Neutrophil Limerick
Her ANC's coming up late.
For days Mady's numbers weren't great.
What we'd adore
Is two hundred (or more),
But today we'll take one thirty eight!
Day 36: The Johns Hopkins test results
Monday, October 15, 2007 - As you may remember, last Wednesday Mady's bone marrow and spinal fluid were sent to Johns Hopkins for ultra-accurate MRD (Minimal Residual Disease) analysis. Dr. Friedmann reported today that Mady has less than 0.01% leukemia cells in her bone marrow samples. This technically means that she has No Detectable Leukemia! (Much thanks to you all for the NDL chanting) This is the best news we could have hoped for from JH.
Is she cured? Unfortunately, no.
There are over a trillion (1,000,000,000,000) cells in the bloodstream. Traditional testing methods can detect leukemia cells only if they make up more than 1% of the studied cell population. With these tests a patient could still have almost one billion leukemia cells and have "no detectable leukemia."
The Johns Hopkins tests are much more accurate, but Mady could be at less than 0.01% and still have almost 10 million leukemia cells in her body. She probably doesn't have that many, but her doctors know that she is very unlikely to be completely leukemia-free at this point--and even if she was, there would be no way to know. All it takes is ONE surviving leukemia cell to surface later and start this horrible disease all over again... Thus the required 2 1/2 year chemotherapy protocol, regardless of the results of any currently-available test.
The next step is the Consolidation Phase, in which she will begin another round of chemotherapy as soon as her ANC reaches 750 (Unfortunately her ANC was still at 38 again today, so that could be a while it seems). I don't yet know the details of the Consolidation protocol, but I'm pretty sure it involves more of the dreaded subcutaneous asparaginase, along with other chemo delights.
Bottom line: The best possible news from JH, and on to the next step in this long odyssey. Friends and family, thank you so much for your encouragement, support, and help... they mean a lot to Mady and to us. --T
Trey's Birthday
Trey turns 50 this Wednesday, a big number overshadowed by a much bigger event. In spite of the dire circumstances, please feel free to write happy birthday wishes to Trey here in this blog. As many of you know, he appreciates poetry in all it's different forms, so please fellow wordsmiths, write away. Love, ca
Day 35: The falcons at MGH
Sunday, October 14, 2007 - When Julia and I would visit the hospital during the first weeks of Mady’s illness, we’d almost always use the tree-lined sidewalk next to the Parkman garage near the main entrance. Sometimes we would hear the screeching of what sounded like a hungry bird… a BIG hungry bird. Startled, we’d stare up at the garage hoping to see it.
A friend in Belmont told me that falcons had been recently sighted around MGH, and she wondered if I had seen them. Because Julia and I always heard the screeching in the same location, I hypothesized that we’d been hearing a baby falcon in it’s parking garage nest. This happened many times, and I became fiercy determined to spot it.
On my own one evening, I searched the garage floor by floor. I randomly heard the bird, but it always seemed to be a level above me. When I finally got to the roof level, it seemed to be coming from the trees and not from the garage at all. I couldn’t find it, but I kept trying every visit.
Recently, Mady’s Grandma Peggy (aka my mom) visited the hospital, and we told her about the noisy falcon. Mady, Julia, Grandma and I went outside and stood staring at the garage for a long time before the bird finally made its presence known and released a barrage of ravenous squawking. Grandma focused on the side of the garage for a few seconds and then said “I’m pretty sure it’s coming from that speaker.” What!? That box is a speaker? Why? Then it hit us…
There are millions of sparrows and starlings in this area, and we often see them swarming in the sky and trees around MGH. But we've never seen them in the dense trees above this much-used sidewalk--and the ground is nearly free of bird-droppings. What keeps them from roosting in these trees and pooping on the unsuspecting pedestrians below? You’ve probably guessed it too...
The little birds fear the fierce and hungry squawking of a large bird of prey. They innately stay away from the digital-recording of a natural enemy, played at random intervals 24 hours a day. This clever idea must've been much less expensive than building a covered walkway to protect the pedestrians from unpleasant bird droppings.
Mady had heard me talk a lot about my ongoing falcon search, and she thought it was pretty funny when Grandma finally figured it out. She said the solved mystery would make a good blog entry. (Oh, and by the way, yesterday’s ANC was 38 and today’s is 38 again. Not 200, but not going down, and that's good. Sadly, you had to read this whole bird story to find out any actual information about Mady...)
Are there real falcons flying around MGH? I’m still looking!
Day 34: Gratitude Check
Saturday, October 13, 2007 - An incomplete list of things for which I am thankful:
Excellent medical care-- Except for the shots, Mady has had little pain and nausea. Even better, she hasn't gotten one of the infections that can really muck things up.
Doctor's we like and trust-- Not a bad one in the whole lot. All of them really seem to have paid attention in their oncological medicine classes.
Cool MGH nurses-- They're experienced and funny, and it's obvious that they really care about Mady. As a bonus, they even have good music and movie recommendations.
My job-- It's interesting and we're doing good things for architects and the world, and I really appreciate the good friends I work with. Amazingly, they can alphabetically contort their bodies to spell "MADY!" a dozen different ways.
Our wonderful family and friends-- I am completely blown away by so much caring and generosity. Everyone is really coming through and underscoring the importance of people in our lives... Thank you.
Madeline's laugh-- I heard it more last night than I've heard it all month. She's clearly feeling a bit better during this lull between the first two chemotherapy phases. We have a long road ahead, and it's going to be tough, but Mady's laugh will vanquish the disease.
Julia-- It's tough being the other sibling, but she's handling it well and helping out. I'm also very grateful for the Messengers, her current "foster family."
Chris-- She's the best mom a sick (or well) girl could have... she's kind and caring, and I love her. Chris is truly the heart of our family.
Mady-- She's a wonderful daughter and friend. I think of her and smile.
The leukemia is pretty sucky, but it has forced me realize that I have so many wonderful blessings in my life, and that there is so much right with the world.
For these things and more, I am very grateful.
Day 32: Still zero, still at MGH, but still infection-free
Thursday, October 11, 2007 - Not much happened today. Mady feels tired, but okay. After being off of the chemotherapy steroids for a few days, she's lost much of her drug-induced I-could-eat-a-horse-and-chase-the-rider appetite, and her blood sugar is stable. Mady leaves a lot of hair on the bed each day, but still seems to have most of it on her head--she apparently has some very hardy follicles that are courageously fighting the chemo barrage.
With no measurable neutrophils, she essentially has no immune system... and infections of any kind are really the biggest danger to chemotherapy patients at this stage. As much as we'd love to be home, the positive-pressure neutropenic benefits of Ellison 1816 are critically important, as well as the daily IV bags of antibiotics that she receives. Until she can resist infections on her own, we know that this is the place she should be. (Sigh)
Day 31: Oh no, ANC back down to...
Wednesday, October 10, 2007 - Madeline's ANC went down to ZERO today. When looking at her bone marrow, Dr. Friedmann reports very few cells but no leukemia, so she will be recovering at MGH for perhaps another week until her bone marrow produces some neutrophils. We are sad and disappointed about our continued stay, and will have more news in the coming days about the specific Minimal Residue Disease (MRD) test sent to Johns Hopkins Medicine. But, we are feeling very optimistic about the state of her leukemia. Her doctor mentioned that Madeline has done very well and often children are postponed from leaving the hospital or starting the consolidation phase due to infections, which Madeline has fortunately avoided. Consolidation ideally starts one week after induction (day 36) but the doctor anticipates that this date will be postponed for Madeline to recover and produce a consistent ANC level of 750. Love, c
Well, after having cleaned all the accoutrements out of Madeline's hospital room completely, there is some sad irony in the fact that we're staying in Ellison 1816 for a while longer. The nurses, trying to say something positive, commented that "the room sure does look a lot bigger." Julia and I will do something for decoration, but we don't yet know what. Julia wanted to just bring everything back when we visited this evening... Ha! We did bring back a wheelchair's worth of stuff: laptop, paper plates and spoons, a lovely pesto pasta dinner that friends dropped off for us, salt, Chris' bag of clothes and toiletries...
As Chris mentioned, while we're pretty disappointed by the ANC score, we feel better about the leukemia score. The oncologists took a microscopic look at today's samples, and they didn't see any leukemia cells. It will still take some time for the Johns Hopkins work, but Dr. Ebb said that the more accurate tests typically confirm MGH's preliminary in-house analysis. We'll take this as good news.
Dr. Ebb told us that Daunomycin was the important and very powerful chemo drug that has had the unfortunate side-effect of slowing the recovery of her healthy bone marrow. The treatment protocol allows one to two weeks for ANC recovery, and we are in that period. We had hoped to get home sooner rather than later, but we will get home... and it will be sweet.
In the meantime, keep that positive energy focused toward Ellison 1816! NDL!
Day 30: Woo Hoo! Mady's ANC hits...
Tuesday. October 9, 2007 - She's on the rise! And the really good news is that if she maintains at least 100 tomorrow, the doctors will be discharging her from MGH! Of course, everyone is hoping for 200 or more, but as long as her ANC doesn't go down, she's coming home.
Based on this news, Chris packed up Mady's hospital room throughout the day. This evening Julia and I hauled the stuff to the car-- three wheelchairs full, including bags sitting on the footrests and hanging from the IV posts. The nurses got a big kick out of our multiple heavily-loaded trips out of the room.
Mady is a little nervous about tomorrow, and it's not the "Will I get to go home?" part. In spite of the fact that I'll be calling it Day 31 (I measure from the day she entered MGH), tomorrow is the all-important Day 29 (they measure from the day she started chemotherapy). The Induction Phase is over, and Dr. Friedmann will take another bone marrow aspiration (we jokingly call it a core sample) and a spinal tap for spinal fluid. The samples will be sent to an out-of-state lab for special analysis with equipment much more sensitive than any available in the Boston area. It will detect even the smallest continued presence of leukemia cells in her body, and the goal is to find no hint of the disease. This analysis will take a couple of days... and they will be LONG days.
If Mady has no detectable leukemia (and the doctors all seem to expect this to be the case), she will begin the 2 1/2 year Maintenance Phase of the chemotherapy. I don't yet know what the exact protocol is for this part, other than periodic outpatient chemo sessions at the Yawkey Center. If tomorrow's tests still detect leukemia, then her treatment will take a more aggressive turn--I know much less about this very undesirable possibility, but it could involve another month-long induction phase at the hospital.
Family and friends, for Mady's tests tomorrow, let's all focus on NO DETECTABLE LEUKEMIA. Prayers, positive energy, fingers-crossed, ceremonial dances... it's all good.
Coming home will be sweet, but coming home with no detectable leukemia will be indescribably wonderful.
Day 29: Today's ANC is...
Monday, October 8, 2007 - This is great news! For days she has had zero neutrophils, and today she has an ANC (Absolute Neutrophil Count) of 30. ANC is a calculated value, so I'm not sure exactly how many neutrophils that represents, but it's a lot more than ZERO!
It means her bone marrow is starting to do its job. She needs to get to 200 to get out of the hospital... but 500, or 2,000, would be even better!
Keep up the ceremonial neutrophil dances everyone... they're working!
Bone Marrow- Do your thing!!
Each day we wait until about 10 am to find out what Madeline's blood counts are and see if her bone marrow is producing enough neutrophils to allow her to go home. You cannot imagine how much we all want to be home. We think about it all of the time. It doesn't help. It's actually better just to get in the zone and practice diversions. The saying, "it's not the destination, it's the journey" comes to mind. It's a journey that we did/do not want to take, probably similar to some soldiers in Iraq. We are at war, and we have a battle to fight.
It's toughest for Madeline on so many different levels. I can go home, and so can Trey and so can Julia, and so can all of her visitors and doctors and nurses and staff. But Madeline can't. Madeline says she misses her bed the most, even with the high tech hospital bed that she has, the favorite toy of many of her younger visitors. When I am at home there is a piece of me that is missing while my daughter is in the hospital. And I know there is a part of her that is missing that she left here in our home. I walk in her room and I am overcome with sadness. I want her here.
Julia and I spent Saturday and much of Sunday cleaning both of their rooms. We washed , laundered, scrubbed, and used a HEPA filtered vacuum, borrowed from a willing friend, everywhere. Cleaning helped assuage some of the pain of the situation, as if we could do something positive to promote her healing in light of the powerlessness we sometimes feel. So we are ready and now waiting for those neutrophils. Come on bone marrow, do your thing!
Madeline's New Hair-do
Friday afternoon Madeline and her friend Stephanie, both wearing face masks, walked over to the Yawkey Center hair and wig salon and Madeline chose a lovely, long wig with bangs and layered ends. It's almost her exact color but with red highlights.
She wore it back to her room and proceeded to fool a number of visitors who failed to notice the change in hair style for many moments until both girls fell into paroxysms of giggles. It doesn't stay on her head very well yet, as she still has alot of her own hair, so she could choose to wear a head sock under it (think cone-head) or constantly adjust the wig, or, most likely, not wear it yet.
Julia was smitten when she saw it, and proceeded to attack Madeline with hair brush and clips in an effort to further style it... as if Madeline was a giant Barbie styling head. After being continually re-buffed, we may find a fun wig for Julia to play with at home. Madeline is so glad she has her wig for when she will need it.
Day 28: Why Neutrophils are holding us hostage at MGH
Sunday, October 7, 2007 - The hematologist dropped into the room moments ago and let us know that Mady's ANC is still... zero (not counting the lone cell pictured above). The hematologist said that this is not particularly unusual, but it's what keeping us in the hospital. She needs to have an ANC of 200 to be discharged from MGH. That's still really low, but I guess not life-threatening out in the real world (as long as she wears a mask).
Definition: ANC will often appear on the blood test report of a person receiving chemotherapy. It refers to the percentage of neutrophils (white blood cells that fight infection) and cells that will become neutrophils multiplied by the white blood count (WBC). The significance of the ANC is as follows:
ANC below 2000 is considered to be neutropenia.
ANC between 1000-1500 fairly low risk of infection. Chemotherapy will usually be given in this range, but not below it.
ANC between 500-1000 - moderate risk of infection.
ANC below 500 - severe neutropenia - high risk of infection. Avoid crowded places.
ANC below 200 - stay in Ellison 1816.
YouTube - Childhood Cancer Awareness
Some parents of children with ALL recently created a YouTube video that captures many of the amazing children who are fighting, or have fought, Leukemia...
Click here:
YouTube - Childhood Cancer Awareness
Day 27: The Parking Muse at MGH
Saturday, October 6, 2007 - We're about to start our fifth week at the hospital, and we (along with lots of visitors to Ellison 1816) have had to find parking near the hospital many times. Mady's last ANC measure was still zero, so it appears we'll be searching for parking around MGH a while longer.
We've parked in the Yawkey Garage often, and as Boston parking goes it's pretty cheap at $8 for 2 to 24 hours if you're visiting a patient (it's $40 if you're not). We've also had occasional luck finding a parking meter on either Cambridge St. or Charles St. Just don't park farther than 12 inches away from the curb or you'll get a $20 ticket (yes, I know this from experience).
But the place to try first is North Anderson Street. It's the next one past North Grove Street (the main entrance to the hospital), but it's one-way and you can't get to it directly from Cambridge Street. Turn into North Grove then take the first right (onto Parkman Street) and right again onto North Anderson. We've almost always been able find either free parking (6pm - 6am weekdays and all day on weekends) on the east side, or metered parking on the west side. Click on the picture above to enlarge it.
By the way, in the middle of the east side of the street you'll see Bob--a small freestanding brick building that Julia loves... and she named it Bob.
North Anderson is only one block long, but because you can't turn onto it from Cambridge St., the parking muse often leaves spaces available for those who are enlightened and persistent enough to drive around the block to look.
Parking karma? We can make our own stinking parking karma...
The Music Therapist, Lorrie
Madeline's favorite person here at MGH is Lorrie, the music therapist who visits a couple of times per week with her keyboard and computer. She always makes Madeline smile.
Goofy, dramatic and engaging, Lorrie is one of those natural therapists for humanity, in need or otherwise. She doesn't expect answers and she is enthusiastic with very little. She makes Madeline comfortable and I know Madeline is in safe hands when Lorrie visits.
The other day Madeline recieved her iPod during a Lorrie visit and I returned to watch the two of them... Lorrie teaching Madeline her know-how of iTunes and iPods and Madeline gratefully soaking it up. Madeline says "Lorrie is a kindred spirit."
Through the various procedures and highs and lows, we can always count on Lorrie.
One Medicine Madeline Enjoys
The high dose of steroids that Madeline took for her first two weeks of protocol caused her endocrine system to temporarily shut down, often requiring daily insulin shots. Following that period, Madeline has had the opposite problem, too little blood sugar. It seems that she does fine during the day, but at night during a long fast her blood sugars drop precipitously.
The doctors even wonder if she has had this all her life when we told them that she gets up at 5:45 every morning to eat breakfast. Yesterday, by 8 am when breakfast was delivered, she showed scary signs of low blood sugar, trembling hands. More doctors visit, and we are given a prescription of one peanut butter and jelly sandwich at 10 pm to see if that will keep her blood sugars normal throughout the night and into the morning. This morning she 
sleeps until a record 8 am and has a higher blood sugar count than any previous post steroid morning.
Peanut butter happens to be one of Madelines favorite foods (perhaps because it was doing something her body needed?) The best medicine is love, and for Madeline, the second best medicine is peanut butter.
Day 24: Less ANC = More Ellison 1816
Wednesday, October 3, 2007 (happy birthday Chris) - Today I learned that the normal range for white blood cells is between 4 and 10 (percent, I think). However, the critical number is what is termed an “Absolute Neutrophil Count” or ANC. Neutrophils are the subset of the white cells which are most responsible for fighting off infection.
Yesterday, Mady's ANC seemed on the rise, and Dr. Friedmann thought that she could probably be released at the end of this week. In anticipation, Julia and I brought a lot of stuff home Tuesday night to make a Friday exit a little easier, and that apparently jinxed it.
Today, her ANC is zero... she has no neutrophils. None. This kind of swing is apparently not unusual, but she needs a certai
n period of steady increase to be able to leave the hospital. Her doctors now say she will stay in Ellison 1816 at least another week.
Noooooooooo!
Well Julia, I guess we've got to haul all that stuff back to hospital...
Day 23: MGH - Massachusetts General Hotel?
Tuesday, October 2, 2007 - We are now into our fourth week at Massachusetts General Hospital, and in some ways it has been a surreal experience. Contradictions abound.
The time at the hospital has passed quickly, yet Family Camp, where this all started, seems like ages ago. What happened to the last three weeks? Even with this blog, it's difficult for me to remember.
We wanted to aggressively fight this terrible disease, while keeping our lives as normal as possible. As doctors pump and inject powerful chemicals into Mady, the normal we came up with was dinner together each evening as a family. We eat, play games, sometimes watch a movie, then I drive Julia home. Next day, the same thing. Not normal, but we're able to make it work. The crisis is draining, yet the routine is comforting.
Mady has gotten some cool stuff that she's always wanted... a laptop, an iPod, etc... It has sometimes seemed like a big crazy birthday party at the hospital. The gifts have absolutely done their job and helped to distract her from worrying about the chemotherapy... but they are just things. A couple of days ago she tearfully told me that she didn't want Leukemia, and she would gladly give up all the stuff forever not to have the disease.
Mady is receiving life-saving treatment in the Pediatric Unit of one of the best hospitals in the world, and Chris and I are basically living there too. The hospital completely expects parents to stay and is set up for it, yet it feels so strange to pad out of the room each morning headed for coffee and some breakfast. I say good morning to nurses and doctors as if they are also staying or working at this nice big hotel. Then I pass a room and notice parents who, I think, spent the entire night holding their child's hands and crying... this is definitely not a hotel.
This experience is emotionally and physically exhausting, but we're gaining perspective and strength. We learn, we love, and we're getting stronger. The four of us had never faced anything this difficult before, yet we're each coming through in our own way... especially Mady. Our family and friends are excelling too--they visit, they comfort, they support, they love. We will not only survive the next 2 1/2 years of cancer treatment... we will thrive.
When Mady began her chemotherapy, her bone marrow was almost entirely filled with Leukemia... allowing virtually no blood cell and platelet antibody production. Without these cells, the human body can survive for only a very short time, thus the long inpatient stay at MGH. Now, the chemo drugs have killed most of the invading cancer, allowing her marrow to start production of blood cells and platelets again. Her ability to resist infection with her own antibodies is key to getting released from the hospital and becoming a chemotherapy outpatient.
We still have a few days to go before the critical bone marrow and spinal fluid tests on Day 29... unfavorable results could radically change her treatment protocol. But this is separate from her antibody production, which is now increasing. It seems likely, according to Dr. Friedmann's analysis of Mady's current blood tests, that she may be allowed to become an outpatient within a week... and maybe even by Friday. (Yay!)
As nice as this place is, we will not miss the deluxe accommodations at Ellison 1816.
Blue Wigs and Fun Hats
One of Mady's visitors last weekend was a friend of ours who recently finished treatment for Hodgkin’s Lymphoma—she’s now cancer free and her hair is growing back nicely! She brought Mady a couple of stylishly funky hats and a beautiful blue wig. The wig is better than one could have imagined and made of very nice materials (not the like the crazy purple and pink Halloween wig that Julia found at Party Needs). We think it's the perfect style for Mady's return to school. But when will that be? Well, we don't yet know all of the details of the transition back to school and home, but we are working on the details while Madeline recovers in the hospital.
I wanted to create a positive pressure room in our home for Madeline located in our master bedroom so she would have her own bathroom, and had come up with some workable ideas only to have Trey and the doctors look at me like I was crazy. So I am focusing on smaller more workable short term solutions, like buying a hepa filter vacuum, a hepa filter air purifier and stock in Cal Stat hand sanitizer. I am also ridding our house of all superfluous chemicals, and waving a sad goodbye to seeing really white clothes exit our dryer as bleach goes to the wayside. As for having Madeline go back to school, there is this awesome woman here who works with schools to provide an easier transition for children with Leukemia, talking to her classmates about the disease, if Madeline chooses. She hasn't yet chosen what she would like done, if anything, right now.
The wig, whichever wig she chooses, or wigless if that feels better, is certainly one of the big steps. Love. ca
Day 21: An amazing Ellison 1816 success story
Sunday, September 30, 2007 - I found out this week that a lovely young woman at my office had leukemia when she was 10. Now in her early twenties, she won a very difficult battle with AML and is completely cancer-free. Hearing her success story was uplifting, but this is the amazing part: Dr. Ebb and Dr. Friedmann were her oncologists, and she had her long inpatient stay in... Ellison 1816.
Dr. Ebb came by the hospital room today, and I told him about my friend at work. He remembered her perfectly, of course, and described what a wonderful young woman she was and still is. Her success is inspiring, and makes us all smile.
Test results in hand, Dr. Ebb told us that Mady's blood has 0.3 % white blood cells. This is still quite low, but within a range that they don't find unusual. Her white cells fight infection, and there are too few to be of much help in the real germ-infested world. If all had gone perfectly, there was a possibility that she could've gone home in a few days, but he said that the test indicates that she will probably be an inpatient for at least another week. A bit of disappointment there.
The Boston weather was beautiful once again, and we had another nice long walk today... and I SWEAR that we stayed on the MGH grounds. In our travels we discovered a huge bronze sundial that we hadn't seen before. We soaked up a little sun, had a couple of coffees (Mady likes decaf with cream, no sugar, and a just a touch of hot chocolate), and then headed back up to Ellison 1816 for some good karma.
Day 20: Red Sox win the American League East
Saturday, September 29, 2007 - After another nicely-therapeutic pizza-and-games-on-the-hospital-bed-Friday night, Chris got to head home after one more marathon five-day stint at the hospital. I brought the newly-released Season 6 of Smallville (our favorite TV show) and we watched a couple of episodes. At one point Mady told me, "Dad, you should get your cot ready... it's almost midnight... Mom's going to kill us!"
We had an uneventful night. She was "off the hook" and we both slept pretty well... even with the blood draw and vitals by nurse Susan at 2:00 AM. One bit of early morning good news is confirmation that her blood sugar is no longer too high, 100 at 2:00 AM, and she doesn't need insulin shots for now... at least until they start her on the Decadron again.
We woke to learn that the Red Sox had clinched the American League East title last night after their Fenway win against the Twins combined with a juicy Yankee 3-run meldown in the 9th inning against the Orioles. Mady thought the news was "pretty cool"--hey, I think she's becoming a huge Red Sox fan!
Dr Yowker, the current resident on today's rotation, and her team came in at 9:00 AM to examine Mady and check out a "tingle" that she had in her left foot yesterday. They basically gave her what looked like a field sobriety test, and had her walk around on her toes and heals. Then they listened to her chest and back, and said that all is good. After temporarily ending the powerful Decadron steroid, they have her on the powerful Hydrocortisone steroid to ease her system back... ah, the nuances of medicine. Nurse Juliette will give her a 
couple of units of whole blood this morning after her Lovinox blood thinner shot, along with a number of important little white pills and various liquids taken orally.
Her treatment protol is perfect, in my opinion. I'm not a doctor, but I play one on TV...
More of Mady's quotable quotes
"Well, I'd rather go to a baseball game than have Leukemia"
A friend gave me two corporate tickets for a Red Sox game so that Julia and I could have a father/daughter date this week. Before the game I asked Mady, who is not yet a huge fan, if she was disappointed that she couldn't go to a baseball game since she's immunosuppressed. This was her cheeky reply.
"Um, wait... I think I'm still too much awake!"
Mady was completely unconscious with a general anesthetic for her first bone marrow extraction and spinal tap. For the subsequent ones, the doctors now use a local anesthetic and give her a drug that leaves her semi-awake. She was worried that she was still going feel the needles too much, and told them so. The doctors replied that they were already finished--without her even knowing it, they had already performed the invasive procedures.
"They have me off the hook!"
Mady telling me that she doesn't, at the moment, need to be connected to either the telemetry unit or an IV drip.
Day 18 (cont): Good News
That fateful Monday, when we were told to go the MGH emergency room without any information but that they "wanted to check the blood work because there was something odd about it," we sat in a private room in the children's section of the MGH emergency room for some time before three doctors visited us with the bad news. Mady's oncologist, Dr. Friedmann was one of those people. She has been our point person since, although she shares being on the 18th floor with a few other oncologists, so we saw her the first week, but other doctors are the point people when she is absent from the floor. Last week, when Madeline did not make the less than 5% marker, we were not told by the oncologist on duty and waited until the following day for the information, given to us by Dr. Friedmann. So in my mind, bad news arrives later at MGH.
But that changed Thursday afternoon when we were told that Madeline has less than 1% leukemia cells in her bone marrow sample. We are waiting for the final results, and Dr. Huang assured us that the preliminary results are usually pretty accurate and if not, they wouldn't be off by 4%. It did feel like forever waiting for the news, alternating trying really hard not to think about it with fearing the worst and assured of the best. Apparently, like last week, there are so few cells that they had to investigate further, and this is typical for day 8, and day 15 lab work. As Dr. Huang mentioned in the sentence following the one that gave us relief, the real test will be on the 29th day. Day 29 is the day of the next bone marrow aspiration. At that time, they will look at the sample for minimal residue disease and we will know if she continues on her given protocol, or if added treatment is required. The real test is on the 29th day, until the next test... until the next test... until she has no more cancer. The battle has just begun... and we have some good news.
Joy, thankfulness, short term relief take shape, and I can actually smile. Friends visit, and I was able to walk parts of Boston talking in barely cohesive sentences with two Moms while our children hung out at 1816. Madeline felt crummy from the double dose of chemo she takes on Wednesday afternoons, but her friends regaled her with silliness and made her feel a little better.
I know we have said it before, but thank you for all of the cards, emails, support and care you have given. It is an immeasurable gift!! Love, Chris
For those who read the initial entry, I edited quite a bit of it. First, it seemed rambling when I re-read it days later, and second, it was fairly negative. We have good days and bad days, moments filled with optimism and hope and moments where fear takes hold and for me, it's excruciating. There are moments where I think of bad luck, but often feel that we have very good fortune and that the room is spiritually fortified by the amazing view. And as for strength, one friend commented "And, most importantly, you will learn how to be weak and strong, there for each other and not, in different combinations and rhythms ... to the extent that you have a much deeper appreciation for each other, each of the kids, your extended family, and your friends." Those word make sense to me in the situation we now find ourselves.
Day 18: And now a word from our sponsor...
Thursday, September 27, 2007 - Wow... we use a lot of Cal Stat Plus Anitiseptic Handrub here at 1816 Ellison. The manufacturer says that it is a "63% v/v isopropyl alcohol-based handrub with enhanced emollients. It is designed to effectively decontaminate the visibly clean hands of healthcare workers and visitors before and after patient contact, and after contact with inanimate objects. The patented formulation kills more than 99.999% of tested transient organisms in 15 seconds while moisturizing hands."
Everyone uses it in the vestibule of Mady's room before they come in. She's a Neutropenic (immunosuppressed) patient, so she has a private room with a vestibule and positive air pressure. The positive pressure keeps air flowing from the patient room to the corridor--no nasty airborne things get in. By the way, for patients who are infectious (not Mady) the nurses can flip a switch in the vestibule and make the room have negative air pressure--then nothing gets out. Mady checks the switch whenever she passes through the vestibule.
I know that many of you are asking: Is Cal Stat Plus better than Purell? (a bottle of which I have on my desk at work) The answer is yes and no. At 99.999%, Cal Stat Plus kills more germs than Purell, which boasts only 99.99% effectiveness. Also, Purell contains only 62% alcohol--a full percent less than Cal Stat Plus. Cal Stat Plus's big negative is its obnoxiously cloying baby powder scent, while Purell smells like a refreshing summer drink with a twist of lime... Bottom line, they're both effective, but only if you remember to use them--and use enough so that your hands are still wet after 15 seconds of rubbing.
Day 17: How Mady feels about cancer
Wednesday, September 26, 2007 - Friends have sent us a number of Cancer web links, from which I’ve learned a lot about the disease and about cancer awareness programs. I was familiar with the pink ribbon denoting breast cancer, but I didn’t know that most types of cancer have their own “awareness” color. As it turns out, Leukemia is Orange, and Lavender is the color that recognizes ALL cancers.
Mady and I found one cancer awareness product line particularly appealing and expressive of the way she feels about the disease. We ordered an orange Cancer Sucks hat for her, and some lavender Cancer Sucks silicone wristbands for family, friends, doctors, nurses… anyone who feels the same way and would like to wear one! They just arrived--stop by Ellison 1816 and pick one up…
We hope that the bracelets will help stimulate conversation and awareness about cancer, and that this will ultimately lead to increased donations for cancer research. Every dollar gets us closer to a cure for all cancers.
Plus, we find it just feels good to say "Cancer Sucks!"
Day 15: TWO weeks at MGH
At last she was free from telemetry and IV's and we walked to the main desk in the front of the hospital for a wheelchair and continued to her consultation. Although she didn't let me know how anxious she was before looking at wigs, her relief was palpable. She said they looked much better than she had anticipated and she picked two that worked well. These the stylist will get in her color and she'll choose one for her "serious" wig. She wants a few fun wigs in exotic colors too. The other day I overheard her talking about what wig she should wear on her return to school and mentioned a neon blue wig laughing, something we are still searching for...
We then visited the Cancer Resource Center and the Healing Garden and returned to a visit from some of Madeline's friends who travelled to MGH on the T by themselves. We finished the day as a family eating quiche and soup that friends had supplied with new knitting projects and blog drafts in our laps, while Madeline played Dr. Potter, the resident psychiatrist, in a game of chess. We are all doing well in our new routine, trying to make life as normal and fun as possible.
Day 14 (cont): Mady and her dad get busted for leaving the hospital grounds...
Well, we still have fond memories of yesterday's excellent wheelchair adventure to the Boston Common. When the doctors and nurses on the pediatrics floor heard about our excursion, they were all clearly impressed and surp
rised--I got the distinct feeling that no one has ever gone that far in a hospital wheelchair before. When one of Mady's oncologists, Dr. Mary Huang (left) heard about it, she came to speak with us.
Dr. Huang explained that going outside is fine (with a mask and a wheelchair), and even encouraged, but we really must stay on the hospital grounds. Mady is an inpatient for a reason, she reminded us, and she needs to be at the hospital in case something happens. That completely made sense to both of us, and we promised to stay on the grounds for future outings.
Today we took a shorter wheelchair (and mask) trip... through the lovely hospital courtyard, and around the hospital to a back entrance we had never seen before. It was all new to us, and was a reasonable distance--MGH is a huge facility! It wasn't the Boston Common, but it was still fun.
Mady walked whenever we were inside the building. She said her legs were just a little wobbly, but not too bad. It was great to see her on her feet.
Back to Ellison 1816 for a tuna sandwich, and a scheduled transfusion of platelets for dessert.
Mady's room in fake panorama
Several of you who are unable to visit have asked to see a photo of Mady's hospital room. I'd love to make one of those seamless 360-degree panoramas through which you can navigate with your arrow keys... but I have no idea how to do that. The series of photos below are the best I can come up with for now.
The room is highly-decorated by Mady's sister Julia (following a trip to the Party Needs store) and by cards, flowers, plants, posters, photos, books, banners, and much more, from family and friends. The nurses are very impressed, and they all say they have never before seen such a decorated room. Mady loves it... thank you.
If you turn your computer 90 degrees clockwise (or maybe it's easier to turn your head 90 degrees counter-clockwise), put your face really close to the screen, and squint your eyes a bit, it might look kind of like a panorama view...
I don't know how, but my friend Cindy created a REAL panorama of these photos... click HERE to see it on Picasa...
Day 14: Ellison 1816 - A Room with a View
Not the best photo panorama, but you get the idea. If you've got to be sick and stuck in a hospital room for 2 to 4 weeks somewhere, then this is the place. The best medical care in the world, and a room with a view.
Here's a photo from the room at sunrise this morning. In the foreground is MGH's impressive new Yawkey Center for Outpatient Care, where Mady will probably get all of her outpatient chemotherapy for the next 2 1/2 years...Day 13 (cont): But where are the Swan Boats?
Fortunately, the doctors gave the okay for Mady to go outside for a little bit this afternoon... with the wheelchair and mask, of course. She took me on a mini-grand adventure:
First we saw The Liberty Hotel, a new facility conveniently located right next to Mass General Hospital. Formerly the Charles Street Jail, now a very cool $150 million luxury hotel. She had seen it with Chris a couple of days before, and she enjoyed showing me the massive old bars that are still on the windows throughout the lobby.
We wheeled down lovely Charles Street a bit, which was quite rough in a wheelchair since the sidewalks are all 200-year-old old brick and cobblestone. Just when I thought we'd have to turn back due to excessive bumpiness, Mady asked if we could go to the Boston Common (one of our family's favorite places). Well, it was about five blocks further along Charles Street, so we took the nice smooth street--like a bike!
We wheeled around The Common and had a delightful time. There were lots of tourists, picnickers, Frisbee players, dog walkers, kids sitting on the Make Way for Ducklings ducks (Mady has sat on them many times), and even a wedding party getting their pictures taken. We headed down to where the Swan Boats operate on the pond in the summer, and that's where the picture above was taken.
I think we both saw The Common with new eyes today--it was so liberating to be out of the hospital, free (at least for now) from the IV tubes, pills, and shots...
Day 13: Another beautiful day in Boston
Saturday, September 22, 2007 - Last night was a pretty good night. We had some great pizza from the Upper Crust (which has always been our favorite pizza, and it's just down the street from MGH) and a hilarious game of Apples to Apples with friends... using Mady's bed table for both. There were moments when I think we all almost forgot that we were in a hospital room (actually Mady just told me that she never forgot she was in a hospital room... but she did enjoy the evening).
After not going home from MGH for five days (Friday and Saturday are my my nights at the hospital), Chris got to sleep in her own bed last night. I'm sure she was much more comfortable, but I talked with her this morning--she worries more about her daughter when she's away from her. It's nice to get clean clothes, sleep without beeps, and see the cats... but in many ways she'd rather be here. Mady says she's a great mom (that will come as no surprise to anyone).
Last night the beeping wasn't too bad. Mady's been staying pretty well hydrated, so they didn't have to attach her to the IV bag during the night--so no beeping pumps, and few trips to the bathroom. She made her best pitch for trying to talk them out of attaching her to the telemetry unit (and the nurse even called the doctors to ask), but to no avail... so there was occasional beeping when she would move in bed and somehow disturb the wires' chest connections.
For the medical professionals reading this post, her vitals this morning were:
- Blood pressure: 95/54
- Heart: 69 bpm
- Oxygen: 99
- Temperature: 97.8
She was visited this morning by the weekend resident physicians Erin Mahoney and Anna Rosenquist, and then by a member of her oncological team, Mary Huang. They all asked how she was feeling, listened to her chest and back with stethoscopes, and asked if she had any questions (which she didn't at that moment).
After finishing her morning IV's around lunchtime, nurses Kristen Nuttall and Kathryn Patten unhooked her completely and said she won't need to reconnect to any equipment until 6:00 tonight! Mady is clearly very happy to hear this news, and we're planning to go on a little walking adventure somewhere (which she can do as long as she wears a mask). It's a beautiful day in Boston, and we're gonna get outside! Timeout... Kathryn says she thinks that Mady can probably go outside, in a wheelchair, but she needs to check with her doctors to confirm. Hmmm... maybe I can just sneak her out...
More of Mady's Quotes
"So, Stephanie... How do you feel about me having leukemia? There are plenty of psychiatrists in the building that would love to talk to you!"
Mady smiling, and clearly impressed by the wealth of resources available at MGH, offers some of the hospital's psychiatric services to her friend...
Day 12: Mickey Ignatius
Friday, September 21, 2007 - Madeline is sitting on her bed with her new Build-A-Bear "Mickey Ignatius Hamburger," and reading one of the Princess Diary series. She is lovely with her new short haircut, twiddling her hair with one of her fingers. She has a sheet over her legs and she looks quite cozy. Today, she'll have a little more freedom to roam, as they'll stop the IV drip of fluids for a few hours.
We found out yesterday that although her body is responding well to the chemo treatment, she did not make the rapid early responder of less than 5% leukemia cells (remission) after one week of treatment. With the marrow aspiration they found very few cells (and she had marrow FILLED with leukemia cells), but of those 50, 24 were leukemia cells. Apparently, 50% of children make it to that benchmark by day 7 and the other 48% make it to the "remission" by day 15. This is an important milestone--if she doesn't make it by next week, her protocol (treatment) will change to include low level radiation to her brain.
OK-- it's about then that a crack in my survival demeanor let out panic and fear and I started to cry uncontrollably, upsetting Madeline. Luckily, Trey arrived with Julia 1/2 hour later and Madeline told him "I was freaking her out." We talked about the positives and assured her (and ourselves) that her treatment is progressing as anticipated. We ate dinner together, pulled out the visitor's cot for Julia to try while watching a movie (Spirited Away) and I sat between my two daughters both snuggling in their beds and ran my hands through their hair, marvelling at the unexpected joy of being here with my family, safe and loved, in contrast to the fear that was overwhelming me just a few hours earlier.
I will be holding her in my heart all week hoping that she makes the "remission" and I'll try to do this without "freaking her out." Someone who knows told us "don't focus on the negative, it doesn't help." And they are right, it doesn't. I can't go down that path, it's simply too frightening, and it doesn't help. Love, Chris
The Boston Common Walk 10/04/2007
The Leukemia and Lymphoma Society's Light The Night Walk will return to the Boston Common on Thursday, October 4, 2007. Check in begins at 5:00 p.m. with the stage presentation beginning at 6:00 p.m. and the Walk beginning at 6:30 p.m. Join us as we walk together in support of the Society's mission: to cure leukemia, lymphoma, Hodgkin's disease and myeloma and improve the quality of life of patients and their families.
You have the chance to be part of something great. The Society is the world's largest voluntary health organization dedicated to finding cures for blood cancers. The Society is investing millions of dollars in the most promising blood cancer research available and seeing tangible results that improve the quality of life of patients and their families. Because of Light The Night, we are one step closer to a cure.
All those interested in learning more about how to participate in this year's Light The Night Walk in Boston, MA, please contact Dara Croci via email Dara.Croci@lls.org or call 1-508-879-5083, ext. 21. Or hop on the website to register.
Day 11: Mady's Haircut
Mady's hair is longer than it has been in years, but we know that the chemotherapy will cause it to start to fall out soon. Hair can be pretty important to 13-year-old girls, but she doesn't talk about it much.
She decides that short hair falling out won't be nearly as bad as really long hair falling out. Friends who have been through chemo-induced hair loss think that this is a really good idea. She wants it short, but not a buzz-cut... yet.
The new Mady! She washed it, and said that she didn't even need to use conditioner to get the tangles out...
And she has a 12" braid to send to Locks for Love.
Wise Words
Passed on from a Mom with a son who has CF from a Dad who's child had ALL: "As the parent in this situation you must do two things, aggressively fight the disease and make the disease as unimportant in your and your child's life as possible."
From a friend: "Whenever you can, find stillness and the opportunity to ask 'What is it that I'm being shown, or that I need to realize right now?' Just listen. There is astonishing strength and love to be gained in this journey, and I know you are already getting it in ways you never wished, for sure, but ways you never imagined either."
Day 10 (cont): Rona, the Build-A-Bear lady
As we were hanging with Mady this evening, Susan the nurse brought in a lovely hospital volunteer named Rona Matisoff. She's friendly and funny and has been delivering stuffed animals to sick kids for 32 years. For the past 4 years they've been Build-A-Bears.
The company donates the bears, and a local man donates $2,000 a year for the bears' clothing. Rona organizes Build-A-Bear parties for volunteers to stuff and clothe the bears, then she visits sick kids in the hospital and lets them select the bear they like.
Mady picked a very cool Snow Leopard wearing khaki shorts, hiking boots, and a reversable vest--it was Rona's favorite too! Thank you Rona, you do good work.
Day 10: Rapid Early Responder?
Today is Mady's one-week of Chemo anniversary! This morning Mady "donated" a second sample of both bone marrow and spinal fluid, this time without having to go under general anesthesia. Her doctors are hoping to find fewer than 5% Leukemia cells in her bone marrow... and this would make her a Rapid Early Responder to the initial week of chemotherapy--a very positive thing! It sure sounds good. We'll know tomorrow, I believe.
Genetic 
analysis of Mady's Leukemia cells shows certain indicators on chromosomes 4, 10, and 17, and you know what that means don't you? Well, me neither... but it's a type of Leukemia almost always only seen in much younger children. The doctors think that this is good news, but the ramifications are not exactly clear. Dr. Ebb (left), one of Dr. Friedmann's partners, told us this evening that this is the sort of thing that has only ever been seen in a handful of teenagers.
Oh, and in a previous post I mentioned that there was a 1% chance that they'd find a really BAD genetic indicator... they DIDN'T find that one. :-)
Day 9: Tuesday Afternoon
Tuesday, September 18, 2007 - It's 2:30 pm, and I am sitting here on Madeline's bed. The view from her room is spectacular with views from Boston Harbor to the Hancock Tower and a bit of the Charles River and sometimes it does bring solace and wonder even amidst the unbelievable pain and shock of the cancer diagnosis. It really is unbelievable. How could this happen? Madeline is wondering "why me?" Two weeks ago we are talking about shopping for fall clothes, and now we are shopping for a wig. The immediacy of the diagnosis required that we all take a nosedive into the cancer battle and yet we are at the same time in disbelief and shock.
Today has been a particularly difficult day but it seems to be quieting down nicely. Madeline had her haircut this morning since she will lose her hair over the next few weeks and having short hair makes it seem less painful (friends who have lost their hair suggested this and Mady gave the OK). She looks adorable. She then proceeded to almost pass out while getting ready to take a shower, necessitating some bed rest, more IV fluids, blood and unfortunately, missing an opportune chance to change her clothes. She is temporarily on insulin, a side effect of one of the steroids, so they have to check her blood and then remedy it, both with pricks, facilitating quite a bit of empathy for people with diabetes. She has to take a plethora of pills, have daily shots and chemo. She doesn't want to do it, but she knows this is the only door out. She doesn't want to have cancer, and everyone can empathize with that sentiment. The worst parts are the chemo, shots and changing the dressing for her port.
The IV nurse today reminded me of the principal in the story Matilda, as she ripped away the dressing to Mady's scream of "Can't you be more gentle?" Mady is devising some coping mechanisms, however, to the number of people who come in to meet, poke or prod her. Yesterday, when 2 doctors came in and sat bed-side waiting for her to wake up, she slept and the minute they left she sat up and said "Oh good, their gone, I can go to the bathroom." Today, she simply asked the few not required to come back another time. Everyone wants her to feel OK with what's going on. Everyone seems worried about her feelings of sadness surrounding her diagnosis. We are all overwhelmed at the long road in front of us but I bet for her, the long road seems endless right now. I guess I think she is doing just fine considering.
Please allow her to be sad. Don't make her tell you the positive parts of her stay here. They exist. On the whole, we feel coddled and well cared for, but allow her the time to adjust to a new paradigm within her world that includes cancer. As she said today "I knew of people who had cancer, and I never thought it would be me." love, Chris
Day 8: Can Julia get Chicken Pox?
Monday, September 17, 2007 - The nurse from the Chenery Middle School left a message that their computer had flagged Julia for not having a Chicken Pox vaccination. In the context of Mady's illness, she thought that this needed to be taken care of urgently.
How could this be possible? She gets an annual exam and plenty of shots if needed... no Chicken Pox vaccination? Sheesh.
Turns out that she got one in Washington state at the age of 7 months, but Massachusetts doesn't count the shot unless it's given after the child is a year old. Her pediatrician says it would be best for Mady if Julia didn't need another vaccine, and the state will accept a blood test showing Julia's immunity to Chicken Pox.
So, today I brought Julia in for her first (that she remembers) blood test. Her relief that she wasn't getting a shot turned to horror when she saw the blood draw needle. The nurse was very good and it wasn't too painful... but Julia got to experience a tiny bit of what Mady's going through every day.
Day 7 (cont): We get the EKG family plan
Mady has now had several EKG exams, which involve connecting wires from a complicated machine to sticky pads on her chest and leg. The doctors have noticed something slightly unusual about Mady's chart: her heart's recharge time (there was a fancy technical name for this, but I forget what it is at the moment) is a tiny bit longer than average. Not typically a concern, but in the context of the chemo drugs they want to keep an eye on it.
The cardiologist said she would very much like it if Chris, Julia and I would get EKG's so that she could see if there were any inherited similarities. She said the nurses could just do the tests on us in their spare time, and indeed, they were more than happy to do them.
I got mine this morning in the chair next to Mady, and the test itself was quick and painless. The very painful part was pulling off the four sticky pads, as they each effectively removed a quarter-sized patch of dense chest hair. It was the least I could do for my daughter (who got a pretty good laugh out of it)...
Day 7: Thick sweet blood = more shots
Sunday, September 16, 2007 - One of the chemo meds can tend to thicken Mady's blood, so she will be getting a daily blood thinner medicine, which can only be given as a... shot. Not like the dreaded Asparaginase though. This shot is in the arm and much smaller--less painful than even a common insulin injection that diabetics get each day.
Oh, did we mention that one of the other chemo meds is causing her to have high blood sugar levels? She'll also be getting a common insulin injection each day.
The girl that doesn't much like shots is not pleased.
Day 6: The dreaded subcutaneous Asparanginase
Saturday, September 15, 2007 - While most of Mady's chemotherapy drugs are given intravenously or orally, one is given as a shot (subcutaneous) into her thigh. In fact, the dose of Asparaginase is so large that it must be given as three simultaneous (and big) shots. Two hours before, they put some numbing cream on each injection location--two on one thigh, one on the other. Does Mady have a preference which leg gets the two shots? Um, no... not really. Dad's maybe?
She truly does not like shots, and this is the atomic bomb of hypodermics. The three nurses surround the bed, raise it to counter height, and pull out what look like elephant syringes. I hold Mady's hands and I hug her, trying to block her view of her legs. She involuntarily flexes into a fetal position, and the nurses firmly let her know that she must keep her legs flat on the bed--which she now does.
The needles go in, and it seems to take several minutes for them to empty. Actually, it's over in a matter of seconds, but apparently Asparaginase has the power to slow down time. And then it's done, and the nurses assure us that this medicine is only given periodically. Whew! (Wait, couldn't periodically mean any period of time?)
So far, I believe that this is her least favorite part of chemotherapy.
Day 5: Sunrise over Boston
Friday, September 14, 2007 - I'm laying here on a cot in Madeline's room, waiting for her to wake up. She had a pretty good night last night (not counting the usual blood pressure and temp checks every 4 hours, and the IV bag changes at what seem like random times). We had a 6:00 am blood draw (she LOVES that) and saw a very pretty sunrise from her 18th floor room... luckily she mostly stayed asleep.
Last night was my first night spent sleeping in Mady's room at the hospital. After three straight nights here, Chris is getting a well-deserved night at home with Julia and the cats. Spending the night here is important to us and to Madeline, but it means getting sleep in short doses... it seems that something always starts beeping every couple of hours: Her IV pumps beep when a bag is empty or a dosage complete; The IV pumps beep if a slight crimp in her line is blocking the flow to her arm; The IV pumps beep if someone (usually me) forgot to plug them back into the AC outlet after a bathroom break and the batteries start running low; The telemetry unit beeps if her heartbeat ever goes down below 49 beats per minute for a few seconds (which it often does when she's sleeping); The telemetry unit beeps if her oxygen sensor comes a little loose from her toe; The telemetry unit beeps if any of the three wires comes loose from the contacts; For a while, the nurse call unit would beep randomly (but they fixed that)... You get the idea. Mady rarely wakes from the beeps, thank goodness, but parents are genetically wired to be incapable of sleeping through them.
The nurses here at MGH are wonderful. They are loving and caring and they treat us like we are the only patients here. We know that Mady is fortunate to be here at the world's epicenter of medical and cancer research and care.
Some of Mady's quotable quotes
"Mom might like to have that cot"
After Chris spent the first three nights at the hospital sleeping on an uncomfortable reclining chair next to Mady's bed, I spent a night in relative luxury when the nurses found a cot for me. Mady strongly suggested that we keep possession of the cot for mom too.
"Are you just here for your own entertainment?"
Said to me with eyes closed and a sly grin when I changed her TV from a DVD movie to the Red Sox - Yankees game on Friday night after I thought she fell asleep. She did let me watch the game.
"I need to go to the bathroom"
Madeline never had to pee very often before, but to keep her kidneys flushed, they are intravenously pumping 150 to 200 ml of liquids per hour into her. This is double the liquids that a normal human her size might take in orally, so she goes to the bathroom more than usual. Still, the nurses call her The Camel because they've never seen someone take in so much liquid and yet go so long between toilet breaks. Going to the bathroom is an effort though, as it involves disconnecting the telemetry leads from her chest, the Oxygen monitor from her toe, and switching her IV pumps to battery power to make them wheelable to the toilet. Whew!
"White in White, Green in nothing, Black in Red"
After the bathroom break, her three telemetry lead wires need to be re-connected into sockets that don't match their colors. She saw my confusion and recited the quote above... which has become a mantra after each bathroom break. Why don't the colors match? I have no idea.
Family and friends, we love you
Chris and I have made phone calls and sent emails (our lists may not yet be entirely coordinated... I hope not too many people are still in the dark). Family and friends have responded with visits, calls, voicemails, emails, flowers, cards, stuffed animals, journals, puzzles, posters, brownies, frozen casseroles on our doorstep, and much more. We have felt such magnificent expressions of love and support. Thank you... It gives us, and Mady, great strength to know that we don't have to face this alone.
I know that many of you want to help, but aren't sure exactly how. We're new at this and we aren't exactly sure how either, so let's all play it by ear. Your expressions of friendship, love, and support are much appreciated, along with positive thoughts and prayers.
If we think of specific help we need, we promise we'll try to let you know. In any event, keep that wonderful positive energy flowing toward Mady...
Day 3: Excellent news
Wednesday, September 12, 2007 - We found out the results of the spinal fluid tests: there were NO Leukemia cells detected. This was great news as it means that Mady will probably not require any radiation therapy to her brain. They do check her spinal fluid twice more during her inpatient stay, so please continue to keep your fingers crossed.
She began her chemotherapy in the evening, but since she always has one to three intravenous bags attached to her at any given time, it didn't seem like a huge deal. Some of the drugs are oral, so there are definitely more pills to take. One of the drugs is subcutaneous (via syringe) to her thigh, but that comes another day... yikes.
Madeline's coordinates for the next few weeks
The hospital has her officially admitted as Helen M. Klein, but all the doctors and nurses know here as Mady (or Madeline)...
Madeline Klein
Mass General Hospital
Ellison Building
Room 1816
55 Fruit Street
Boston, MA 02114
The direct line to her room: 617-724-5864 (either Chris or I will answer if we are there)
Day 2 (cont): We learn a LOT about Leukemia while Madeline's in the OR
Chris and I were able to accompany Mady to the OR. After donning masks, suits, booties, and head coverings we even got to hold her hand as she was given the general anesthetic in the operating room. I was starting to get really concerned that they were going to let us stand there and watch the entire operation... but after she was asleep they ushered us to a pediatric OR waiting room at about 3:00 pm. A very nice nurse talked with us for some time and helped Chris cancel an just-remembered eye-doctor appointment that had been long-scheduled for Mady for that afternoon. We got a pager that would instantly give us any news about Mady's operation and let us know when it was over. She also gave us Lorna Doone cookies, saltines crackers and Cokes--the only food either of us had had all day. I gotta say, that food tasted like a grand feast in light of the earlier news that the Leukemia was the ALL type.
Chris' brother Brian and her sister-in-law Lynn found us in the waiting room--and it was great to see them and have them with us. The pager vibrated... the bone marrow aspiration had gone well, and the oncologist would come talk with us soon. Dr. Alison Friedmann, Mady's wonderful Pediatric Oncologist, found us and took us to a private conference room where we talked for over an hour. We learned A LOT about Madeline's Leukemia. I have over four pages of notes from that meeting, but here are the main points:
- Mady has Precursor B-Cell Acute Lymphoblastic Leukemia or ALL, the most common and treatable form of Leukemia.
- Being a teenager puts her in a higher-risk group. The lowest risk are 2-10 years olds, infants are higher risk, and the highest risk is group adults.
- The cure rate for a girl in her age group is 80-85%.
- "Cure Rate" (which sounds a lot better than Survival Rate) means the Leukemia goes away after the 2 1/2 year treatment, and never comes back.
- The 15-20% that aren't completely cured have a recurrence of the Leukemia in 4-5 years after the first treatment and must go through (more aggressive) treatment again. The cure rate goes down each time (when and if) Leukemia comes back. These are the cases that can involve bone marrow transplants.
- The first stage of treatment for Mady is called Induction, and she will receive this as an inpatient in the hospital over the course of the next 2 to 4 weeks. Her biggest risk at this time is infection due to low white blood cells and antibodies. They keep a very close watch for signs of infection while she's in the hospital--and they can quickly administer antibiotics if they discover any.
- It's absolutely okay, and even important, for friends and family to visit--but not if they are sick in any way. Everybody should always be sure to use the hand disinfectant before they enter her room.
- After Induction, Mady's blood and bone marrow should be clear of Leukemia and will be producing the needed white blood cells and antibodies that are currently suppressed by the cancer cells. This is when she'll be able to come home from the hospital. (Yay!)
- They know, however, that she will not be completely Leukemia-free at this point, and she will continue with 2 1/2 years of chemotherapy--mostly as an outpatient.
- Dr. Friedmann did a spinal tap and got a spinal fluid sample which is currently being analyzed for Leukemia cells. If found, Mady would need radiation to her brain, in addition to the chemotherapy. (This was disturbing, but we had to know... and all we could to was wait.)
- Mady will get three spinal taps and three bone marrow aspirations in the first month.
- No one knows what causes Leukemia, but they do know that her sister Julia is not at any higher risk to get it than anyone else in the population. (Good news!)
- They analyze the genetic markers in the bone marrow Leukemia cells and find a really bad genetic indicator maybe 1% the time. (This sounded really scary, but the risk was low and we didn't find out any more about this)
- Mady will get four different meds in the first month: 3 chemo and 1 steroid. This seemed manageable... four is a pretty small number. (Turns out that's just the chemotherapy drugs, not all the other meds... more on this later)
- The goal during treatment is NO PAIN and NO NAUSEA.
- She will lose her hair in 2-3 weeks. I never knew why this happened, but the doctor explained that chemo targets Leukemia cells because they are rapidly dividing. Other rapidly-dividing cells in the human body include hair follicles, which are also zapped but will come back after chemo ends. Most other body hair cells are do not divide so rapidly, so arm hair and leg hair tend to stay. Eyebrows and eyelashes are on the fence.
- There is a clinical trial that switches out the standard steroid (Prednesone) for a slightly more aggressive one (Decadron) that may increase the cure rate slightly. We can choose to participate in this trial (we both know we want to immediately) but even if we do there is only a (computer-assigned) 50-50 chance that we would get the new steroid.
Whew! That about covers my notes from that meeting. I was very impressed (and thankful) that Dr. Friedmann (left) was so patient and able to spend that much time with us. I hope most of my notes are correct!
Day 2: ALL and True Love
Tuesday, September 11, 2007 - When the alarm woke me the next morning I had the split-second sensation of having had the most awful dream... then I noticed Chris was gone... then I remembered.
Julia went off to school with our good friends Kim and Will and their daughters Sarah and Hanna (I think they will be seeing a LOT of Julia in the next few weeks). I headed for MGH during rush hour (and found out that the normally-20-minute-drive can take an hour and a half with traffic). I made my way to Madeline's hospital room on the 18th floor of the Ellison Building, overlooking the gold dome of the old Statehouse and The Charles River--slightly better than the windowless exam room of the night before.
Mady was getting ready for surgery that day, but first she needed a chest x-ray and I accompanied the Hospital Transport woman that took her to the Radiology Department. The x-ray tech was friendly and accommodating when Mady said she felt a little faint when standing at the chest x-ray unit. He found a chair and improvised nicely. When she was done he asked her if she was too old for stickers and stuff, and she shook her head emphatically no! He gave her some High School Musical stickers and a red and white rubber wrist band that is imprinted "True Love," which she asked me to keep for her--and I intend to wear it (next to my LIVESTRONG wrist band) until she's cured.
When Mady and I got back to her room, Chris got a call from the oncologist. After a while I overhead her say "A-L-L" and I gave Chris the thumbs up sign. We still hadn't discussed the ALL/AML thing, but I knew we now had our first positive news! No one really felt like high-fiving though.
Day 1: MGH... Mady's new home for a while
Monday, September 10, 2007 - Chris called from the Emergency Room at Mass General Hospital (left) shortly after I spoke with Mady's pediatrician. A blood cancer specialist had told her that Mady almost certainly has Leukemia. We were devastated, and Julia and I headed to MGH. Mady would be admitted that night, and asked for my big Red Sox t-shirt to sleep in.
I really knew nothing about Leukemia and I had had just enough time to Google it and get really scared. There are several forms, one of the worst being Acute Myeloid Leukemia (AML) with a 29.4% survival rate according to my comprehensive Google research. The better Leukemia is Acute Lymphocytic Leukemia (ALL) which was listed as having a 75% survival rate. None of the choices sounded that great. And what does survival rate mean anyway? No time to find out... we had to get to MGH.
We found Mady and Chris in a cramped ER exam room with equipment and supply shelves covering all the walls. We all had a good cry... even Julia, who is normally on the stoic side. We learned that Leukemia is considered a cancer success story and is CURABLE. The treatment period is typically 2 1/2 years and that Mady could get a tutor for missed school. I believe we all misinterpreted this to mean she'd be out of school for that long, and a while later Madeline asked "Dad, will I be kept in THIS room for 2 1/2 years?" We all had our first little laugh of the day, and we assured her that she'd soon move out of this tiny windowless room, but we didn't know what else to say--we had no idea at that point how long she'd actually have to spend in the hospital.
Oddly, there was a TV in that exam room, and while waiting (turns out you do a lot of this when you or a family member has cancer) we we mesmerized by a show we had never seen before called Survivorman. In each episode, this regular guy spends seven days in a very hostile wilderness environment with not much more than the clothes on his back, a pocket knife, and one match. He lugs the video equipment around himself, and has no camera crew to bail him out. In one that we saw, it was near freezing in the Yukon wilderness and one of the first things he did was accidentally fall into the water and soak everything. We were riveted as he suffered setback after setback, but he never gave up, and in fact he stayed pretty upbeat. I remember getting goosebumps and thinking that the show was a positive omen--it could be a good metaphor for Madeline's upcoming struggle: His situation seems bleak, but you KNOW he's going to make it. (Julia pointed out to me later: "Dad, of course he was going to survive. It's a TV show. They wouldn't show it if he didn't make it!")
Madeline had a 100.7 fever that evening so they did a chest x-ray to look for infections in her lungs and lymph nodes. They also ran an EKG and drew more blood for testing. She was scheduled for a bone marrow biopsy (for testing), a picc line (a tube that runs from her arm to an artery near her heart for drawing blood and administering intravenous meds), and a spinal tap (to see if she had cancer cells in her spinal fluid). All these things were to happen tomorrow in the OR under general anesthesia. That night Mady was admitted to room 1816 in Pediatrics, and she received units of blood, platelets, and antibiotics. No one knew yet what kind of Leukemia she had, so we didn't talk about it, and I didn't tell Chris what I had learned about AML and ALL. Chris stayed with Madeline, and Julia and I drove home in a daze.
Day 0: Our summer ends...
Our family was looking forward to Camp Lawrence Family Camp on Lake Winnipesaukee in New Hampshire. The morning was hot, and Madeline hadn't had much, if anything, to drink during the 3-hour drive. When we stopped for lunch before getting on the ferry to Bear Island, Mady fainted after standing in line for 15 minutes. She was somewhat dehydrated, and after drinking some water she no longer felt 
faint, so we continued on to camp. We had a nice week, but Mady's shoulder hurt where she fell on it, and she started to have a bit of a fever in the evenings, but it went away by morning.
The camp nurse gave her Ibuprofen for the fever and pain, and said that if Mady were her child, she'd stay at camp and bring her to her pediatrician upon returning home. I was really worried about appendicitis, but she assured me that Mady would have some rebound pain near her appendix. We stayed and all had a nice time. Although Mady was still feeling tired, she did most everything, but just quite a bit slower than usual. Must be just a viral thing of some kind.
When we got home, we took Mady to her pediatrician right away. He examined her and said she probably just had one of those things kids get... some virus most likely... she just needed plenty of fluids and rest. Six days later she was still tired, still had the low-grade fever at night, and now began to complain about "floaters" in front of her eyes. Chris called the pediatrician's office and described her symptoms to a different doctor, and he said we should bring her in the next morning for a blood test... which we did on Monday, September 10, 2007. We expected the lab results back in a day or two.
Shortly after returning home, however, we got a call from the doctor's office. They asked Chris to bring Madeline to the Mass General Hospital emergency room right away for more tests--they gave us no other information. I came home from work early to hang with Julia, and while I was there I got a call from Mady's pediatrician, who sounded a bit shaken. He said her blood had low red and white cell count and low platelet count. He said that there were viruses that could cause this, but another possibility was... Leukemia.
