Treatment Update: Our next career option: short-order cooks
April 7th, 2008 | by Emily | See all Treatment Update entries | 21 Comments
So, for those of you that have never experienced high dose steroids (and I hope not many have), here’s a view into our lives on steroids. Maddie is currently in the thick of a 21-day stretch of high dose steroids that she takes orally twice a day. The steroid, dexamethasone, helps to rid the body of the leukemia, but has several undesirable side effects, such as excessive hunger, labile emotions, and sleep disturbances. This stretch is Maddie’s second lengthy period of steroids, and, when she first started the steroids, the folks at the clinic told us to expect her “to eat like a truck driver” (no offense to any truck drivers out there). We could never have imagined what they truly meant until we went through it the first time.
Now, armed with some experience, we are better prepared to deal with the challenges of the steroids. Just to give you a sense of this “excessive hunger”, here is what Maddie ate throughout the day on Saturday:
Before breakfast: 1 piece of banana bread, half a tuna sandwich, half a peanut butter sandwich, pretzels, and a bowl of cereal.
Breakfast: half a bagel, egg, bacon and cheese sandwich.
Between breakfast and lunch: half a quesadilla, chips with queso dip, and a hot dog.
Lunch: half a peanut butter sandwich, bowl of mac ‘n cheese, and grapes.
Between lunch and dinner: peanut butter sandwich, chips and queso dip, half a peanut butter sandwich, and sliced cheese.
Dinner: one small piece of pizza
Food cravings are also a piece of this puzzle. During first phase of steroids, she craved lobster stew, which was getting a little pricey. This time, luckily enough, peanut butter sandwiches are food product of choice, and we have honed our short-order cook skills to produce any other highly sought after foods, such as scrambled eggs, grilled cheese, quesadillas, and hot dogs. You don’t want to cross a steroid crazed 4-year-old, if you know what’s good for you, so we do our best to oblige.
She tends to gain a lot of weight during this time, and, as the days progress, she becomes increasingly uncomfortable. Her belly is distended and she looks like she is about 9 months pregnant. Her sleep is erratic, a side effect of the steroid and the fact that she is constantly hungry. She’s up several times in the night, sometimes to eat and sometimes just because she cannot sleep. She gets easily frustrated, too, during this time by the simplest thing that usually would cause her to say “it’s no big deal.”
Sounds like fun, huh? It’s completely heart-breaking to see her go through this time and we do our best to support her with patience and love. We are encouraged by her positive spirit even in light of her struggles with the medicine. We are bolstered by the fact that we only have 7 more days of steroids; we figure we can do anything for 7 days. This is not the way I originally envisioned my taper toward the Olympic Trials, but we gotta play with the cards we’ve been dealt, right?
April 7th, 2008 at 8:52 pm (#)
Just spoil her rotten!! Ice cream and candy and peanut butter and whatever makes her happy. Give her a hug from us and one for mom and G-mom, too.
April 8th, 2008 at 6:45 am (#)
Wow, that’s pretty impressive. I’d expect that to be the amount of food that a 150 pound man might eat! Good luck with the taper and the last 7 days of the steroids.
April 8th, 2008 at 7:55 am (#)
EMILY, THE GOOD NEWS IS THAT SHE’S NOT A TEENAGER. THEN SHE WOULD REALLY BE DEPRESSED AND YOU’D HAVE TO “LIVE AROUND” HER! THE BEST NEWS IS THAT WHEN SHE IS A TEENAGER SHE WILL BE BEAUTIFUL AND COMPLETELY HEALTHY!
YOUR MOM CAN FILL YOU IN,BUT, PAT IS GETTING READY TO HAVE CHEMO AND HE WILL ALSO BE TAKING DEXAMETHASONE IN COMBO WITH ANOTHER DRUG…..THANKS FOR THE WARNING. I’LL STOCK MY FREEZER…
BEST OF LUCK ON BOTH YOUR TRIALS…..YOU WILL WIN THEM BOTH!
LOVE FROM THE SIGMONS
April 8th, 2008 at 9:27 am (#)
prayers are with your family!
April 8th, 2008 at 10:03 am (#)
Emily, All the Timberlakes are pulling for both you and Maddie. Some day our “claim to fame” will be that Jim or Jill drove you to school. By the way, consider a career as a writer. YOu certainly have a way with words.(wonder if Sandi’s genes have some part in that)
Best of luck on your trials. We will be thinking of you and your family. Sue Timberlake
April 8th, 2008 at 10:47 am (#)
Hi Emily, I continue to send good energy?prayers to you, My friend Moe is now also following your blog. Sounds like you are doing a great job as a Mom, nurse, professional runner and general wonder women! I have to bother you for the address again to send money I deleted it. I wish I could send you some groceries too! Stay well, Tracey Timmins
April 8th, 2008 at 12:41 pm (#)
We send lots of love, peace, and good vibes your way daily.
April 8th, 2008 at 1:28 pm (#)
Emily, Your mother is a good friend of mine and has shared with me Maddie’s illness. My son was diagnosed with brain cancer when he was 12 weeks so I have also walked this road. The steroids were terrible on him. I was telling your mom the other day that I did alot of research on nutritional support and found that celery juiced is a natural anti-inflammatory and worked very well for my son while he was undergoing chemo. He had to stay on steroids pretty much all the time, but we were able to lower the dose considerably with the nutritional support. But your mom said you are pretty savy with on the nutritional side so you may already have that info, but just in case I wanted to share it with you. My son’s skin was very sensitive to the sheets, etc on the bed so you might try a very soft blanket for her to sleep on and their body temperature will typically stay pretty high, so she may sleep better in the cool air surrounded by soft cozy blankets. Please know that if you need to talk to another mom that has walked down that road or just have questions that I may be able to help with, please contact me day or night at 405-410-6574. Hang in there, everything will be alright! Be comforted and know her Angels have pulled her close and are watching over her and keeping her safe.
April 8th, 2008 at 5:03 pm (#)
Hi
I read your article in Runners magazine. I wish you all the best of luck with the trials. I’ve been reading about Maddie and we have a lot in common. Our 3 year old son Luke was diagnosed with Acute Lymphoblastic Leukemia b-cell on March 21, 2007. We now have 1 year behind us. He started maintenence in September. His last chemo treatment will be in May 2010. We know exactly what you are going through, the stage that Maddie is in now Luke was in over the summer. It was very difficult to see Luke so uncomfortable from those nasty steriods. We will keep Maddie in our prayers. Good luck with everything.
Jeanine
April 8th, 2008 at 5:05 pm (#)
We have a website for Luke if you are interested in reading. lukewalz.homestead.com
April 8th, 2008 at 5:50 pm (#)
Emily, I have been following Maddie’s progress through your Mother. I really admire your family. Your Mother explained what Maddie has to endure for her treatment. I know that it is a difficult road. You all are in my prayers.
Betty Lou Stewart
April 8th, 2008 at 8:24 pm (#)
Give Maddie’s big belly a raspberry kiss from me!
Oliver loved “running” the Fund run. Thanks, Brad, for all your fatherly encouragement and for the glow stick! That provided hours of entertainment. I was sorry not to get to run with you, Emily, but had a nice catch up with Brad. Clint was sorry to have missed the group, too (my fault completely!)
Next time, I’ll encourage Oliver to share with Maddie something less fattening than a gummy worm! He he he he he. I better go to bed…
Love you guys.
Oh, let us know please when we can help drive stuff to VT.
noisy kisses,
Ellie
April 9th, 2008 at 7:38 am (#)
EMILY,
I ALSO HAVE A DONATION AND NEED AN ADDRESS..NO HURRY.
XO,SUSAN SIGMON
April 9th, 2008 at 8:46 am (#)
Warmest thoughts are with all of you from the OKC community and Landrunners (Oklahoma City Running Club)…..Maybe thinking of these last days on the steroids as an “extension” of your tapering will help…..All my best, Mark
April 11th, 2008 at 10:59 am (#)
Hi Emily and Co.
I’ve been following your story for a few months now and still can’t fathom what you must be going through. Marathon training is rough – and probably makes you eat like a truck driver too! But then to have Maddie sick too?! We’re pulling for you. And I’ll be cheering for you at the Trials in less than two weeks! Good luck!
Emily R. (Greater Boston Track Club)
April 11th, 2008 at 12:29 pm (#)
Dear Emily and Maddie,
Oh my Goodness Maddie I am so proud of you………. you are eating so well now I really do hope you feel much better sweetie. I hope you got your pink pee. I also hope you come to the Bath Middle School again!!!! I really miss you
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo
Emily
I hope you are having an easier time with Maddie. I really miss you guys a lot. I also want you two come to the Bath Middle school. And lets seee how she is doing. Best of luk in the Olympics!
Two Lucky Rabbit Feet,
Destinee Barter
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo
April 11th, 2008 at 3:43 pm (#)
Emily -
Joy and I are praying for you both. Know that even in the tough times, God loves you both, and is absolutely, positively, unquestionably with you. He will bring something incredible out of this time in your life. Of that, I am CERTAIN.
Hang tough.
April 11th, 2008 at 4:51 pm (#)
I realy have confidence in you Maddie, I wish I could donate blood, and give two trials a billion dollars: ) I am very proud of you, and Emily I wish you two the best of luck, Maddie is the cuttest little girl I had ever met!!!I hope you two come back to Bath Middle School again soon!!
Sincerly: Grace Nehring
P.S.I like your taste in food Maddie ; )
April 13th, 2008 at 5:32 am (#)
Dear Maddie, Emily and Brad,
We’ve been watching you! We remember Maddie when she was just a bump in her mom’s belly. Later, we saw Maddie’s beautiful face and heard her great giggle. We are Arnie Bev and Uncle Eddy (aunt and uncle to Dustin/Kathleen & Ruby/Anja).
Your strength and courage flows through every word you share with us. We are sending it back to you times 52.4!
On your way to Vermont (Dustin/Kathleen/Ruby/Anja can’t wait to have you be their ‘neighbors’) please know we have a place in Gray for you to rest if needed. We already know that you will move forward with grace but we have plenty of peanut butter and a simple home that is always children friendly! (The tadpoles will be in the backyard pond soon!)
Our church has had your family on our prayer wheel since your trials began. The angels are carrying you on their wings of love. May your journey be gentle.
Healthy hugs and blessings,
‘Arnie Bev and Uncle Eddy’
*Just for the record…Dustin ate that much when he was 4 years old!
January 22nd, 2009 at 1:07 pm (#)
I remember last year when you came to see the Bath Middle School 7th Graders. I Hope you and Maddie are doing well. We all miss you we are now in 8th Grade. I hope you guys come back and visit us at BMS. Tell Maddie I told her I love her. Good luck..
Keep Fighting!!!!!!
July 27th, 2010 at 1:08 pm (#)
i am allergic to peanuts so i can only taste a bit of peanut butter even if i love it so much.*`’