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Day 3,711: 10 Years...


Saturday, October 7, 2017 - It's been a little over TEN YEARS since Mady's diagnosis... and (spoiler alert) all is well!


Thank you to those who are still reading this blog (or finding it for the first time).  Writing it certainly helped us, and we hope that it benefits others who might be facing similar struggles in the future.  As of today, it has been viewed 76,788 times (according to the Blogger counter)!

Chris recently posted a 10-year update on Facebook, and it is awesome.  I'm reproducing it here in it's entirety:

Today I went with Madeline to an appointment at the Yawkey Pedi Hemoc Clinic at MGH, stopping at the healing garden to see the view and feel the warmth of the calm there. We passed a slew of new felt banners drawn by other family members for other sick children, and then we walked into the clinic to the smiling face of Noreen, her ebullience contagious. It’s been 10 years since Madeline was diagnosed with leukemia. She has been off treatment for about 7 of those 10 years, but when she is about to go into clinic to get her blood checked, there’s still a little fear and sadness. She’s now down to a yearly check up.
I wait in the hall, where another Mom is railing at her younger son for eating in front of his brother when he can’t eat until after his procedure. In the waiting room a large multigenerational family is having a birthday party with pizza and cake for their 13 year old, who doesn’t smile. Her parents are outwardly joyous, yet there are the tears in their eyes. I’m far away from the fear of those days.
MaryJo, Madeline’s PA, says her blood looks “beautiful”, which delights us, and we are off. We talk about the different doctors, nurses and caregivers at the clinic and agree that they are exceptional. Madeline was given excellent care.
We came home to lovely, barking Buttercup, who is also about 10 years old this month. We picked her up a few weeks after leaving the hospital. Recently, I sifted through all the cards that people had sent to Madeline and all of us from that time. So many people came through for her and for us, sending upbeat cards and gifts and games and food and taking care of the puppy on a clinic day, and picking up Julia from school, lending an ear and a shoulder, playing games and socializing.
Thank-you!! Every card was important. Even if we were too overwhelmed with grief to respond, we felt your gift. We feel your gift! Peace!
10 years. Madeline.
Leukemia. Far
From that fear and pain!

Day 2,064: All is well (just checking in)

Saturday, April 5, 2013 - It's been 3 years, 3 months and 28 days since Madeline took her last dose of chemo.  She still gets checked every 3 months to make sure her leukemia is completely gone... and so far it is!  As I understand it, 5 years is kind of a magic number--after that the chances are very good that the cancer will never return.  So stay tuned.

But for now, she's a very healthy and very happy freshman at Smith College.  AND, she just passed her driving exam today!  Good news for her, bad news for our car insurance bill!  hehe

To those of you who are still reading this blog... thanks for still being here.  Your support has meant a lot to all of us over the last few years!


Surprising Good News

When Madeline was initially diagnosed, she had so few platelets that hematomas formed in both eyes and caused damage. Her optometrist (the ones next to Lens Crafters at the Burlington Mall) took a picture of her eye and wondered why they couldn't bring her eyes to 20/20 with corrective lenses. Madeline complained of shadows in her eyes. We brought her back to Mass Eye and Ear where she had gone many times when she was initially diagnosed and they confirmed the optometrists findings. We thought her eyes were permanently damaged. Last week she had another optometrist appointment and the doctor mentioned that there was some improvement in both eyes. Her left eye can now get to 20/20 with corrective lenses and her right eye, which was much worse, can now get to 20/30 with corrective lenses. So she still shows some damage but seems to be improving. YAY!

Tamora Pierce

writes Young Adult (YA) fiction and all of her books have strong warrior girls who fight evil. In her bio she said she writes about woman/ girl warriors to correct the lack of girl warriors in the fiction she loved as a child. Her books are my daughter Madeline's favorite books. Madeline started reading them when she was 9 and has re-read them numerous times. I knew when Madeline was going through something particularly difficult, because she would bring a few of them to clinic with her to reread. Otherwise, she would bring a book she hadn't read. She asked me to read them midway through her protocol and I read them in the order that TP wrote them; the Alanna series was first, Bloodhound last, all in quartet format. My favorites are the Bloodhound and the Circle of Magic quartets but they are all powerful. I think they helped her get through her protocol, so I am passing these on as a supporting part to her meds. xo, ca

Anticancer: A New Way of Life by David Servan-Schreiber

A few weeks ago a friend mentioned this book and the author in glowing terms. Because of her enthusiasm, I bought the book and just finished it this afternoon. Like The China Study, and incorporating some ideas from Michael Pollan's The Omnivores Dilema, the author lays out a series of arguments that link eating and cancer, specifically, reducing cancer relapse by eating well.

After The China Study, we went vegan for months and Madeline was absolutely hateful of the book and what it had done to her enjoyment of food. I decided to back down and allowed organic milks and butter back into our life, and soon cheeses were frequently seen in our fridge. Then her gallbladder became agitated by the cholesterol in her diet and she willingly gave up all sources of cholesterol. She felt better immediately.

That's what it takes to make a change in one's diet, the knowledge that what you are doing works. A clear link and it's easy to make the leap. David Servan-Schreiber provides the clear link in his book. Please read this book!!!! xo, ca

Day 860: Limericks and Haikus

Sunday, January 17, 2010 - Last night we had a small End of Chemo Party / Sweet 16 Party for Mady. Here are some poems that I read at the event...






This first one was written by Mady:

I am a young girl named Mady…
What's kept me from going quite batty?
Through sickness and fears
For over two years…
Limericks and Haikus from DADDY!

Okay, Mady didn't really write that... but I'm SURE she was thinking it! :-)

Mady’s love and strength
Helps all her family and friends.
It’s how WE survived.

We’re happy this day has arrived,
With family and friends by your side.
You’re healthy ageen,
But you’ve just turned 16…
Now we face DATING and DRIVING!

30 months went fast
Really just a blur, and now…
Mady has curly hair.

If you ask Mady what was her way
To help keep her sickness at bay
Her answer is breezy:
“It’s really quite easy…
I just read a NOVEL a DAY!”

And finally…

This was difficult to comprehend,
And panic a threat to impend.
But with fear at the brink,
What gave us all strength…
Was the love of our FAMILY and FRIENDS.

-tk

Day 853: 1,069 pills

Sunday, January 10, 2010 - Okay, it's been 2 years, 4 months and 1 day since Mady was diagnosed with leukemia on Sunday, September 9, 2007. That also happens to be 20,496 hours, or 1,229,760 minutes, or 73,785,600 seconds (compliments of CalendarHome.com).

Errata: My editor pointed out that Mady was actually diagnosed on Monday, September 10, 2007 (which translates to 20472 hours, or 1,228,320 minutes, or 73,699,200 seconds). We regret the error! :-)

Each day during her treatment she has taken varying numbers of chemo pills (her current bottles are pictured above). She swallowed each one individually since many of them were pretty big, and most of them tasted terrible--even for the short time they crossed her tongue. She usually had a tube of Colgate toothpaste and she would counteract the bitterness with a tiny dab after each pill.

Sometimes she would fall asleep reading in her chair and we would have to wake her up at midnight to take her drugs. Not very fun. The pills came with her everywhere: vacation, camp, and sleep-overs. I believe she didn't miss a single day. By my earlier calculations she has taken 1,069 chemo pills since her treatment started.

I've had a love/hate relationship with her pills. Hate: they are a pain, sometimes made Mady sick, and had plenty of scary potential side-effects; Love: they are destroying the abhorrent leukemia cells and their mechanism for production. I trust that they accomplished their mission...

Tonight Mady took 4 1/2 pills--the last pills of her chemotherapy treatment!

tk

Gertrude Elion

http://nobelprize.org/nobel_prizes/medicine/laureates/1988/elion-autobio.html

Gertrude Elion won the Nobel Prize in 1988 for her discovery of Mercaptopurine in 1954, a drug used to fight leukemia. The link is her autobiography.

End of Chemo

Madeline's protocol did not change from what she was assigned as a high risk leukemia patient in the beginning of her protocol. Due to the amount of leukemia cells and her age (over 10) she was placed in a high risk category. We were told that her protocol would be 2 1/2 years. I think we took that number literally, but in looking over the information, the number is actually 2 years from the start of Interim Maintenance.

IM follows Induction Therapy and Consolidation. Induction Therapy was the 4 week period when she was first in the hospital that brought her counts into remission, and Consolidation was the 57 day protocol following. There is a rest period between the different phases. I was worried that her body required a large rest period between Induction and Consolidation (and every phase transition following), but it was within the normal range even though it was greater than the 7 day allowance shown in the protocol. Madeline required 2, sometimes 3 weeks for her body to bounce back and produce the requisite 750 white blood cell marker to allow her to move into the next phase. And this is still all within the normal range for her protocol, something I did not understand at the time, but was told by her physician.

The start of Interim Maintenance could have been at the earliest, 100 days from the start of her induction (including the (2) 7 day rest periods between phases) or about 14 weeks. Madeline took an extra 3 weeks, so her start of Interim Maintenance was January 10, 2008, and her end of chemo, even with breaks due to sickness (1-2 weeks) is January 10, 2010. She has her last LP next Thursday, and we will review this with her doctor one more time.
xo ca

Day 833: The final few weeks of chemo...

Thursday, December 17, 2009-- It's been a while since we've done an update... my appologies to those who check this site often. Mady's doing great!
More details about this great news soon...

Day 793: Stomach Pains

Sunday, November 7, 2009 - Mady's missed the last week of school with bad upper abdominal pains. The doctors have checked her out, and we're not yet sure what it is. There is the possibility of gall bladder issues or lactose intolerance, but the tests are not yet back.


Fortunately, cutting out cholesterol and most fat has helped a lot... and apparently this means it might be a gall bladder thing. We'll let you know when we find out more.

Aside from this minor setback, she's doing pretty well. Apparently this is National Novel Writing Month, and I think she's taking a shot at that...

T

Hand-made gifts













In the beginning of her illness, and especially during her stay at MGH, people gave Madeline and us tons of stuff. Books, art materials, gift cards, edibles, blankets, toys, stuffed animals, cards, games, you name it, she/we received so many gifts. There was so much, that some of the gifts were given to other children who are also sick with cancer. I wanted to showcase some of the handmade gifts that haven't made it to the blog . A group of women in town bead together and they made Madeline and Julia 12 beautiful beaded bracelets and a necklace for me. The heart shaped lump of love comes from Madeline's Aunt in Texas. I was given a beautiful scarf knitted by Katharine that Madeline loves too. We received some very cool poster cards from Trey's friends at work that spell out Mady and Madeline in Revit models and the friends forming letters. A mom of one of Madeline's friends (and a friend of ours) made her some beautiful head scarfs (I cried hard when those came). One of her daughters made hand made stationery for Madeline. I am having trouble uploading some of the images since our computer crashed and was revived (perhaps temporarily)...so I'll send this out and follow it up with more images in the next post. Thank-you all!!! Love!




Day 759: Still going...

Sunday, October 4, 2009 - It's been awhile, so here's an update. Mady is hanging in there and doing pretty great. She still gets her every-few-weeks lumbar puncture and injection of chemo into her spine, and she still takes about 9 various pills each night and a couple in the morning. Her hair is getting long and is much curlier than it used to be.

Mady is enjoying the 10th grade (I think), and for the past couple of weeks she's REALLY been enjoying our Sunday morning driving lessons in the huge empty Macy's parking lot at the Burlington Mall! She reminded me a few weeks ago that she's 15 1/2 and can soon get her learner's permit (arrrgghhh). So, for the past couple of weeks we've been at the mall way before the stores open, and she's been practicing starting, stopping, turning (with signals, of course), backing up, some parallel parking, and even getting some speed in 2nd gear. We've been using my manual-transmission car because she very much wants to learn how to drive a stick shift. She's doing amazingly well... I can tell she is motivated to be a good driver.

Thanks for still checking these pages dear family and friends!

Day 699: Martha's Vineyard

Wednesday, August 5, 2009 - We decided to go to Martha's Vineyard in spite of the health concerns around Madeline last Friday. We figured that if her eyes became worse, we would immediately leave the island. I watched her, hawk-like for the first 2 days, slowly letting go of my worst fears about a recurrence. When she complained of eye trouble before she was initially diagnosed, she declined rapidly and was exhausted constantly. I was looking for any of those initial signs. Yesterday, following a busy day visiting Edgartown with cousin Kathryn and walking Lambert's Cove, Madeline and Julia joyfully played at the pool for hours. I could really let go of my worries and see how blessed we are right now in this very special place. It has been beautiful here, with hot, humid, sunny weather, some showers at night, and occasional howling winds. It is quiet here as it is never quiet where we live on our well travelled street, the cacophony of birds and crickets and the sound of wind through the low pines mingled with an occasional car passing by. We have found the perfect coffee house, Chez Lounge in VH that vies with Vivace in Seatle, and are trying to find the best home-made icecream, improbable given the litany of possibilities between VH, OB and Edgartown. That's the perfect challenge!! XO, CA

I was with them on Martha's Vineyard last Saturday, Sunday and Monday morning. We had a great time in that wonderful house, and I was sorry to go. Actually living on MV would be fun, but my commute to work on Monday was 3 hours, door-to-door. Yikes.

I can attest to the high quality the of espresso at that funky little coffee shop in Vineyard Haven, but it's very punny name is actually Che's Lounge, and they have use lots of graphics like this. Nice place. They were even written up in The Times.

Like Chris, I was keeping an eye on Mady's stamina this weekend, but after many hours in the pool diving, wrestling, making up crazy races (e.g. swimming in a seated position using only your arms with your legs exended in front of you and toes out of the water... thanks for that one Cousin Jon), she was stronger than ever. I, however, was exhausted. -TK

Worrying Constantly

Yesterday I brought Julia to the dermatologist for a skin rash/ hyper pigmentation on her knuckles after googling possibilities all weekend, and thinking that it must be a form of melanoma. Her doctor assured us it's not melanoma, but a stain from juicing limes (weird but true) followed by sun exposure. A few weeks ago I thought I lost Trey in the surf at a beach in San Diego. There I am, epitomizing The Scream in high def, and there is Trey, joyfully watching beach volleyball (more than 2 people had looked for him there). The week prior I was worried about Madeline having swine flu, or pneumonia. I bathed the house in rubbing alcohol.

Yesterday, Madeline complained about her sight, something that was a precursor to the leukemia diagnosis. I have also noticed that she seems to have lost some of her mojo, another herald, and she seems tired. I have googled relapse, and walked through all of the information. I am trying to pretend that this is not serious either. I have called Dr. Friedmann. Calmly, she said that if her sight worsens, she should see an opthamologist next week. I am trying to balance her calm words with the apocalyptic vision that is happening in my brain. I want her to be OK. I want my family to be OK.

I wish the movie My Sisters Keeper never came out. I don't want to hear about a little girl in a nonexistent scenario fighting for her right to not give her sister help. I want to see the real stories about the survivors, and the people (ornery sisters included) who gave bone marrow willingly, the ones who make life possible. I have a real story. I play soccer on a +40 women's team. One of the women knew about my daughter and mentioned that many years ago, pre children, she saw a request in her Temple bulletin about becoming a bone marrow donor. She signed up, gave a sample and was positively matched with a little girl. Years later at the girls bat Mitzvah, my friend was lauded. This girl is now in college and doing well. My friend said that giving bone marrow hurt. She had to wear skirts for 2 weeks to allow for the ice pads she put on her hips (that's where they take the bone marrow), but 2 weeks of ibuprofen and ice were easy in comparison with what the little girl went through. All of you healthy people out there, please sign up as a donor. http://www.marrow.org/

Please be OK. Please. Those are the words I write in a notebook daily. Please be OK. Please get through this ____ (LP, exam...) and be OK. It has been almost 2 years since Madeline was diagnosed. Please let her get through her protocol. Please be OK!!

Day 628: Awash in a sea of normality (except for dressing up like merfolk)

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

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!


She was back in the school the following Monday, but still walking a bit gingerly on the foot. Hopefully this will mark the end of low-white-cell-induced toenail infections... in her Great Toes anyway.

Mady also had a lumbar puncture and a squirt of spinal chemo last week, and it went quite smoothly. Her doctors seems to have perfected a technique on her which works very well on her... whew.

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!


Best wishes, from our family to yours...


Trey, Chris, Mady, Julia (and also Whiskers, Lucy and Buttercup)

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.


In the early days of pediatric leukemia protocol, when no leukemia cells could be found in the patient's blood after a few weeks--treatment would end. Unfortunately, one or more undetectable surviving cancer cells would often allow the disease to return with a vengeance. Over the years, doctors increased the duration of the protocol, with great success. 2 1/2 years of treatment turned out to be the magic number, returning a 70 - 80% cure rate. They tried even longer durations, up to 7 or 10 years, but these did not increase the cure rate beyond the 2 1/2 year plateau.

So, 2 1/2 years it is.

And why is today Hump Day (besides being Wednesday)? Well... today, 458 days after her original cancer diagnosis, Mady is officially half-way through the 2 1/2 year protocol. Barring any complications that temporarily suspend her treatment, Mady will take her last pill 458 days from today. We're on the downward side of the hump! Woohoo!

Thanks for sticking with us Family and Friends... we couldn't do it without you!

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!


Since Mady and Julia are still vegetarians, they especially liked the smashed potatoes...

-tk

[ps: To the Philippines dad whose daughter is in early treatment for ALL and can't find CANCER SUCKS bracelets down there: Please email me off-blog with your postal address--I bet I can find you some! ehkiii@yahoo.com]

Day 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.

I noticed right away that one of my favorite photos seems to show Barack Obama wearing one of Mady's "Cancer Sucks" bracelets!





Okay... it's not one of Mady's, but Barack's grandmother (Madelyn Dunham) died of cancer during the final week of his campaign, so I'm pretty sure he shares the "Cancer Sucks" sentiment.

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.

Both Mady and Julia, who typically are not very interested in politics, were enthusiastic Barack Obama supporters during this long campaign season. It's terrific that our nation's youth, even ones too young to vote, were energized into political action... I think this bodes well for the future of the United States!

Kathy also sent another great link, from which you can view day-after-the-election headlines from newspapers all over the world. Enjoy!



Go-bama! Let's beat pediatric cancer!
-tk

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 assistant 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.


We tried soaking three or more times per day in hot water, hot water plus Epsom salts, hot water with antibacterial soaps, hot water and hydrogen peroxide, hydrogen peroxide straight, smothering her toes in triple antibiotics and Bactroban*, still the infection persisted and other infections began. Since she has a low white blood cell count, this was not a good thing. If she had been close to her end date for her protocol, the surgeons would have waited until after to do the surgery. But it’s over a year away, they did the surgery now.

This required some safeguards though: a dose of antibiotics into her blood stream before the surgery, one during the surgery and 10 days of antibiotic pills surrounding the surgery. She also had to have a minimum number of white blood cells when tested immediately prior to the operation.

Because it's pretty painful, it is unusual to have both toes operated on at the same time, but given the strict protocol surrounding surgery for her, we opted for the 2 for 1 special. The inconvenience of this is that she cannot walk, so she has been at home with me this week and it’s been fun having her here.

After five days, the bandages came off yesterday... and we all agreed that halloween came early. Back to soaking a few times a day for the next few weeks. -ca


I was there when Chris took the bandages off, and neither she nor Mady would let me take photos of the un-bandaged zombie toes.
Probably a good thing, I guess. :-)

*Bactroban, or Mupirocin, is not too far from the antibiotic of last resort. Kind of scary. -tk

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.



Okay, it's not the Atlantis that Plato described... We did some more research, and we found that the Atlantis that Mady was talking about, happens to be located on Paradise Island, just across the bridge from Nassau in The Bahamas. What a great place for a formerly-underwater city to emerge!

The incredible Make A Wish Foundation put together a fabulous wish for Mady, and amazingly we got to go along too! It began in a trip to airport (at 5:30 in the morning) in a white stretch limousine...

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...












The princesses of Atlantis...
















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!
-t

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

Tuesday, May 13, 2008 - Madeline will attend the Hole in the Wall Camp in June in one of the earlier sessions. The time coincides 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; perhaps 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.
video

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 Lavender. 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...