Treatment Update: Steroids come to an end…
April 14th, 2008 | by Brad | See all Treatment Update entries |
I did not run one mile this week, and I did not have to endure any chemo either. As husband and father, my role over the past weeks has been largely behind the scenes. This week, as the Trials draw near and Maddie finished her 21-day course of steroids, I decided it was time to log in and add some thoughts from my perspective.
These steroid treatments are perhaps the hardest portion if the treatment to bear as a parent, because they make your child so very uncomfortable, tired, and generally miserable. I suppose it was easier this time around because Emily and I could anticipate the symptoms and knew that they would pass after Maddie finished with the dexamethasone. Still, it was agonizing to watch, particularly as we doled out the medicine morning and night that made her feel awful. Maddie was a trooper, demonstrating a level of tenacity and grit that still amazes me. Clearly, she got that from her mother! I just don’t understand where she put all that food…
We are close now to the end of this part of the treatment journey, with maintenance around the corner (hopefully). Someone asked me recently if this effort for the Trials and the fundraiser was worth it. That question got me thinking hard about the past several months, and I am happy to say that I feel like the answer is a definite yes. Certainly it was challenging in many ways, but I have been and continue to be so impressed with Maddie and Emily. They have both tackled these challenges with grace, humor, humility, and tremendous determination, and I feel very fortunate to be in the same family with these two wonderful women.
I also feel fortunate to have witnessed first-hand the caring and compassion of friends, family, and even total strangers who have rolled up their collective sleeves and jumped in to help us in so many ways. There is an Irish proverb which reads, “In the shelter of each other, the people live.” Our family has benefited enormously from what you all have provided; we have lived in your shelter. I am hopeful that the money raised in this effort will help other families in this situation to make their journey a bit more manageable. Thanks to one and all for your efforts!
One other note - there will be a short piece on Two Trials on the NBC Nightly News with Brian Williams. It will air this week, hopefully. We will let you know the details when we have them.
April 14th, 2008 at 8:39 pm (#)
Brad, just wanted to send a quick note. I’m one of the guys from Austin, TX, you met at the Polar Star Hut last month. I finally got around to reading about your wife’s plans for the trials, and then read about Maddie. As the father of a 4 yr old daughter myself, I simply can’t imagine what you’ve been thru the past year. We’ll all be cheering for Emily, and I’ll be sending up prayers for Maddie and your family. And I’ll get my contribution in here before you hit your target.
Brian
April 14th, 2008 at 8:41 pm (#)
Awesome, you guys. While some of us may not be on the verbal side of feedback, know there are many more of us rooting for all three of you - in lots of ways. I think you know it, but try to continue to feel it!! This week, this Sunday, and for a whole lot longer!! Congrats. to you all.
April 14th, 2008 at 8:49 pm (#)
Thanks for the update, Brad. We are all rooting for both of your ladies and we hope that they are both ultimately successful as they tackle their respective trials.
April 14th, 2008 at 10:48 pm (#)
Hi Brad! I remember playing outside with you and Andy so much when we were kids! I would absolutely love to see your entire family! I’m so glad you have this website and that you left a message as well. Your entire family is amazing, and we will continue to pray for all of you. Thank you all for being so open about this journey you’re on. Someday down the road you’ll be able to put your feet up and think, “What was that that just happened?” Right now you’re just in action mode so you probably don’t even fully realize how amazing you all are. So we’ll just have to tell you!
Give your girls a big hug and tell them that some friends (from MT) from Wisconsin are watching and praying…for a speedy recovery, and a speedy run!
Julie (Munsell) Leischner (who got in trouble for sticking my tongue out at your mom when I didn’t get my way…thankfully she forgave me!)
julie_leischner@yahoo.com
http://www.caringbridge/org/visit/ruthiemarie
April 15th, 2008 at 11:04 am (#)
Amazing Amazing Amazing. Grit, determination, courage and spirit… You all are going to make it I just know it. Hoping all goes well this weekend, we’re still trying to hatch plans, I’ll call ya. We love you guys so much and our thoughts are with you. Mish Mike and big D.
April 15th, 2008 at 2:56 pm (#)
Emily,
It has been a long time since I had you in Spanish class at Wiscasset High School, or since I saw you around the Neck. I have always been impressed with your vivacity and determination, and these current obstacles are no exception. I keep your family in my thoughts often, and wish you all the best of luck in your trials and triumphs.
Joanna
April 15th, 2008 at 6:25 pm (#)
Dear Emily, Brad and Maddie,
I’m very sorry to hear that you all are going through such a tough thing, but I’m so impressed with how you seem to be overcoming this obstacle. Your organization is so impressive. You two were both very important to me while I was at Chewonki and I have no doubt that Maddie is just as incredible. I will be following your trials and I know you all will do very well.
Love,
Izzy
April 16th, 2008 at 6:11 pm (#)
just found out yesterday about all your triumphs…..and tribulations. Ouch Ouch Ouch. Have forwarded the site on to Rebel who’s now in London and to Rich (Bland) in DC. All Smiths are wishing you the very best in Boston on Sunday but even more warm strong wishes for Maddie. Glad your Mom’s been there to help. Loves to Sandra and Brad and, of course, Maddie and you. Tell Maddie we’ll have her out here skiing in Colorado next winter with Phin (5) and Phoebe (4). Booka’s two. Oh…and you and Brad may come along as well. Take care, Okie. We love you and miss you and are constantly thinking of you. Hang in there. Love, Coach and Rebel.
April 16th, 2008 at 7:28 pm (#)
That was a beautiful entry Brad… and you should know that we are with you! Mary and I talk often about how we need to get up to Farm Boy, Pancake Levan and Mad Dog! Mary and I won’t be on the course on Sunday (something about the IOC banning my use of the cowbell, perhaps the Chinese will be more open to that idea?) since we will be in Florida but our thoughts will be with all of you - Sunday and beyond. All our live and thoughts - Jamie and Mary.
April 17th, 2008 at 7:29 am (#)
Brad and Emily - My thoughts have been with you over the past months. I’ve been keeping tabs on you via Mary and Jamie and wish you all the best.
Darcy
April 17th, 2008 at 8:38 am (#)
I noticed the NBC Nightly News story will air tonight (Thursday). I have it ‘dvr’d’
All the best on Sunday. I hope to be out there ‘en route’ to the marathon expo to cheer you on. Looks like decent weather.
Strength, positive thoughts, and healthy vibes to Maddie.
Go U Bears!
Caitlin O’C
April 17th, 2008 at 10:31 am (#)
Brad, Emily and Maddie,
Jamie and Mary mention you often and I was very moved after reading more about your situation on this website. My thoughts for strength and well being go to both Maddie and Emily as you face your challenges. I won’t be on the course on Monday, but have some other friends who are running and will share your story with them.
Warmest Regards,
-Anne Traer (Jamie Braman’s sister-in-law)
April 17th, 2008 at 2:51 pm (#)
Maddie, I left some platelets at Maine Medical Center’s platelet donation center last night; I hope you get some of them. When I see pictures at the center of brave youngsters like you who get up every day and do all of the things you have to do, it keeps me coming back to donate. It’s the very least I can do. I hope I soon see your picture on the wall with a big note that says Maddie Levan, cured. Oh yeah, tell your mom to get lots of sleep so she can run really, really, really fast. Dan
April 17th, 2008 at 3:37 pm (#)
Brad,
It’s so nice to hear from you. I hope to meet you someday. Your family has become very special to me; their bravery and determination are humbling.
Congratulations on far exceeding your goal. I trust Emily will continue to inspire us all on Sunday. We can’t wait to see it!
Best,
Jeanne
April 17th, 2008 at 6:13 pm (#)
I just finished watching your profile on NBC news. You and your family are amazing. I will be keeping you in my thoughts and prayers as you fight to attain your goal. You are an inspiration to all of us. Congratulations and good luck, we’ll be watching for you.
April 17th, 2008 at 6:17 pm (#)
Just saw your story on the NBC Nightly News…all of you are just amazing.
Emily, keep on keeping on-you are truly an inspiration to all women and mothers.
I will be praying and thinking about you and wish you all the best.
April 17th, 2008 at 6:20 pm (#)
Brad, Emily and Maddie,
All three of you continue to be an inspiration to me as well as to others. Your collective journeys have been long and arduous, borne out of immeasurable love for one another as parents, daughter and spouses.
My thoughts and prayers are with all of you, as you, Emily, step up to that starting line to run with your heart and soul.
I will be working in the ED that day and you can bet the entire crew will be keeping that mile watch from Damariscotta, ME! Godspeed.
We love you!
Jane Dunstan, RN and the rest of the crew!
April 17th, 2008 at 6:44 pm (#)
I just saw the piece on NBC news and I was so touched. I think that marathon running and having a child with cancer are about the biggest challenges one could conquer. Whether you make the Olympic team or not, each of you is a hero. I wish your daughter a successful recovery.
April 17th, 2008 at 6:45 pm (#)
Hi Emily,
I don’t know if you remember me from our track days with Slovenski at Bowdoin. I remember a dog chasing your neon green soles around the track one race–good thing you are fast!
I read your article in the Bowdoin Magazine and saw you and your beautiful family on NBC tonight. My husband and I have a four-year-old son, Kole, and we are so impressed and inspired by your determination, strength, and ability to give back while you are fighting to heal Maddie. Every year we donate money to a friend who runs the Boston Marathon to raise money for cancer, but this year we have given money to your heartfelt cause. We will be cheering for you and Maddie on Monday!!
Go U Bears!
Airami
April 17th, 2008 at 6:52 pm (#)
Dear Emily, Maddie, and Brad,
We have been closely following your journey online and just watched your segment on the NBC Nightly News. Your perseverance and strength are inspirational. From two Bowdoin runners with a little one in CT to you, we send you all the best wishes and energy for the Trials and Maddie’s continued journey ahead. You are in our thoughts and prayers.
GO U Bears!
Janet Mulcahy Kane
Patrick Kane
Conor Kane
April 17th, 2008 at 6:53 pm (#)
Hi Brad, Emily, and Maddie-
What a wonderful thing you have done for the children in Maine! I have a 2 year old child who has cancer, too. I had a fundraiser for my son last fall and raised money for medical bills, medicine, gas, tolls, food, etc. People do wonderful things, and you are doing a wonderful thing. Keep your head up and hopes high; Maddie will get through this and Emily will be a champion!
Hope lives here!!!!!!
April 17th, 2008 at 7:02 pm (#)
Dear Emily, Maddie, and Brad,
I hope my story continues to inspire you; I know I will think of you often. I just watched your story on Nightly News after putting my two beautiful children to bed. They are wonderful miracles for one simple reason: their father had leukemia in childhood and was not expected to live. Not only has he been in remission for 12 years, but our children are more than we could have ever expected. Good luck and God speed.
Nicole
April 17th, 2008 at 8:01 pm (#)
Hi Emily, Brad and Maddie -
You are all absolutely amazing! We have been following your journey over the last several months and my family has been overwhelmed by your strength, perseverence and determination. Emily, while playing field hockey with you at Bowdoin, I was always in awe of your speed and tenacity on the field. You always gave it your all…nothing less than 110%. You are a true competitor. You are an inspiration to all of us and an unbelievable role model and mother to Maddie. I think of you often and my thoughts and prayers are with you. We wish Maddie and all of the other children at MCCP a successful recovery and we wish you all the best on Sunday. Good Luck and Go U Bears!
Kelsey
April 17th, 2008 at 8:10 pm (#)
Hi Emily, Brad, and Maddie~
I’ve been part of the Leukemia & Lymphoma Society’s Team in Training for five years. Thousands of us have been working really hard for the last 20 years to raise millions of dollars to help find a cure for blood cancers to help Maddie and other children and adults. There are so many people who care and we won’t stop until there is no more cancer. Best of luck on Sunday! I am a marathon runner, too, but not competitive in any way, so I am in total awe of you!
Lauren DeLillo
TNT Marathon Coach
Tucson, Arizona
April 17th, 2008 at 8:25 pm (#)
Maddie, Emily, and Brad,
Thank you so much for what you are all doing. It’s a lesson in courage and tenacity that is nothing less than inspirational. We’re proud of all of you and all you’re accomplishing. Good luck at the trials and the treatment. You’ll be in our thoughts.
Caroline Staudt and Gerry DiGiusto
April 18th, 2008 at 2:01 am (#)
Hi to an inspirational family,
I just watched your amazing story on the news in Australia and wanted to say, I Know exactly how you are feeling and to GO GIRL! My husband and I also have a little girl called Maddy, but in 2000, I tell you this story to hopefully inspire you even more, we also had a little baby boy called Alexander, who passed away from an unavoidable heart defect. The reason I can empathize with you is that he passed two months before my husband, Scott, was to compete in the Sydney Olympics. Like your husband said, it was not just your dream, it was ours as a family to win that medal…and that he did he won GOLD! And I believe you will have Maddie there with you when you achieve your dream, they give you the motivation to dig deeper than you ever dreamt of, but it runs deeper than that - as I’m sure you have felt it your heart! So, cherish every moment and imagine yourself on that podium, as I will for you now! Donna and Scott and Maddy McGrory
April 18th, 2008 at 2:25 am (#)
Hello Brad, Emily and Maddie,
I’ve just seen your amazing story on the news here in Adelaide, Australia and I just wanted to say how incredible and inspirational your family’s story is. All my very best wishes for Maddie’s treatment and recovery, and for Emily’s Olympic trial. I was really moved, Brad, by the comments you made about how the Olympic dream was shared by your whole family.
Good luck and please know we’re thinking of you. Alex
April 18th, 2008 at 7:14 am (#)
Hi folks. It’s been 9 months or so since my son finished treatment over here in Vermont (he was dx with ALL 11/29/04 at age 4). Things are going well for him, but the idea of dexamethasone still makes me cringe. Congratulations on making it through DI. And best of luck at the trials.
April 19th, 2008 at 4:10 pm (#)
Emily, Brad and Maddie- thank you for sharing your story and for your tremendous support of MCCP. Your fundraising efforts and results are amazing! Our daughter is in active treatment at MCCP for ALL too - so we appreciate all that you have done to heighten awareness of all of the great things that they do.
We wish you all the best in the trials tomorrow!
Gretchen Spann & Phil Cawley, and Finn & Neve
April 19th, 2008 at 10:20 pm (#)
thank you for raising awareness of childhood cancer!!!!! you’re an inspiration and i’ll be rooting for you all the way… all best to you and your family from a survivor mom in san jose, california.
April 20th, 2008 at 10:14 am (#)
Great job, Em. Proud of you and Maddie. Are you going to push her in the Boston?!
July 6th, 2008 at 8:12 pm (#)
Hi Emily, We are members of the Rochester Runners and met you & Maddie at our meeting and my wife Mary Ulinski (one of the best 63 year old runners in N.H.) and I made a donation.
I just finished reading your updates and need to tell you that I was diagnosed last week with a cancer called multiple myeloma (I’m 62) and have just started taking much of the same drugs as Maddie (chemo, steroids and thalidomide and IV’s) which hopefully will stabilize and possibly heal my condition.
Ironically, earlier in the year, Feb. 27th, I suffered a severe concussion (slipped on the ice) in Chicago. I was unconscious for 16 days. But I recovered, and in April, we saw you run the trials. Then on May 25th, my wife and I ran the Vermont 2 person Marathon relay. It took me 2:20 for the 1st half, but it was the most memorable race I have ever done. But then I started having other problems and 2 weeks later (about June 10th) I was diagnosed with the myeloma cancer (bone marrow problems, blood cell problems, bone problems).
Out thoughts have been with Maddie, you and your husband since we met. Now, reading your updates, my thoughts and feelings are difficult to express, but they will always be with Maddie, hoping that she will also be a runner and we may both someday run a 5k.
Fond regards and hopeful wishes,
Walter Shyska & Mary Ulinski