Treatment Update: Done!
January 19th, 2010 | by Emily | See all Treatment Update entries | 13 Comments
The last week has been one of celebrations. Last Wednesday (January 13th), Maddie had her last chemotherapy infusion and lumbar puncture. Five days of oral medications followed, and on January 18th, Maddie’s 6th birthday, she officially completed her treatment for leukemia. Sandwiched in between the final infusion and the last of the oral chemo meds was a wonderful party to celebrate her birthday and the significant accomplishment of reaching the finish line of this arduous 26-month journey. Maddie’s new best buddy, our Percheron Draft Horse named Pete, took kids and adults on sleigh rides, while others flew down our sledding hill. “Princess” chocolate cupcakes, apple cider and balloons greeted us in the house after our playtime in the snow. When I think back to November 2007, I had no idea what “the end” was going to be; now that we are at the end, I can confidently say it couldn’t have been scripted any better. We feel incredibly fortunate to have a healthy, thriving little girl. While our road has not been easy, we are cognizant of the fact that many in similar situations face many more obstacles and complications during their journey through treatment. There are not always cupcakes and balloons at the finish line. Maddie is just as aware of that fact as we are; she said to me yesterday that she would like to make a donation to both her hospitals to help those kids that have to stay in the hospital.
This morning, Maddie enjoyed throwing all of her pill bottles into the trash. Oh, the sweet sound of mercaptopurine, methotrexate, dexamethasone, and prevacid hitting the bottom of the trash can and gone now from our daily routine! As we got home tonight from dinner, I said to Maddie in part out of habit and in part jokingly,”Ok, time for your meds.” She looked up at me with a big smile and said,”No, you silly, I don’t have to do that anymore.”
She will have a surgical procedure in February to remove her port (the subcutaneous venous access device through which she has been receiving her chemotherapy infusions). Maddie is looking forward to its removal. I think for all of us the port (although not noticeable to many unless you know it’s there) is a physical reminder of this journey, and we’re at a point where we’re ready to move on. Not to mention that for health reasons it’s beneficial to have it removed as soon as possible. Additionally, she will continue to be monitored closely for several years by her oncologists to ensure that the cancer does not return.
On a bit of a lighter note, I wanted to share some fun facts about our journey over the last fews years that may help put this experience in perspective. Now remember that I was not a math major during my college days, so all numbers were calculated to the best of my ability.
1. Amount of Bactrim (prophylactic liquid antibiotic) consumed : 4,362ml. 1 gallon is 3,785ml. Bottoms up!
2. Doses of oral meds (crushed in Hershey’s chocolate syrup or Hershey’s strawberry syrup, which looks disgusting but was our savior over the last couple of months) : Mercaptopurine – 800 doses. Dexamethasone – 302 doses. Methotrexate – 105 doses.
3. Numbers of days spent as in-patient in the hospital – 10 (all during her initial hospitalization).
4. Number of trips to the ER – 3
5. Number of times her port clotted requiring instilling a clot buster – 3
6. Number of months her arm was purple after her initial blood transfusion infiltrated in her arm – 4
7. Number of times Maddie asked “why me?” during the last 26 months – 0
8. Number of amazing people that helped us along the way – Too many to count!
We want to thank each and every one of you that has supported us and other families through this marathon. While we may never know why certain things happen in life, it has been abundantly clear to us throughout the last 2+ years that as individuals and as groups we have the ability to take a whole bunch of crummy lemons and turn them into the finest lemonade around.
January 20th, 2010 at 11:32 am (#)
That is great news!
Thanks for the update, I’m very excited to hear it!
My cousin is still going through it right now and has at least another year to go.
January 20th, 2010 at 7:41 pm (#)
Hi Emily and Brad,
I have been following Maddie’s story closely and I am so thrilled that her brave journey is over. As a mother of two girls, I think of you often. I have taken comfort in the fact that you two must be the most amazing parents and Maddie is a lucky girl to have such strong people to look up to. I know I haven’t seen you two since bumping into you at Christina’s in Bath a million years ago, but know that you and your incredible daughter and your courages fight has been an inspiration for me and I’m sure to many.
All the best from a couple of fellow polar bears — and I would love to meet Maddie at Reunion this year!
Jenn Belka O’Hara
February 11th, 2010 at 10:33 pm (#)
Maddie, I am so happy you have finished your treatment! My son, Addison is 16 years old and he has Leukemia also. He has 2.5 years left of treatment but he is going to have his port out in a couple of weeks because he wants to play high school football! His hospital is MD Anderson in Houston, Texas. I am so proud of you and the awesome attitude you have. Tonight, I will go to bed with a smile on my face because of your strength and grace! You and your Mom make a perfect team.
February 23rd, 2010 at 9:22 am (#)
Hi Brad, Emily & Maddie,
I know I am a bit late in congratulating you on the news, but wanted to be sure to tell you how happy I am that you finished treatment…and were able to celebrate with cupcakes and sleigh rides! You have been so incredibly brave, and all 3 of you have been so strong throughout this journey (not that I would have expected any different). Thank you for showing so many the meaning of love and family, and for really being the powerful force behind all that lemonade making.
You all are incredible, and I hope to see you guys soon! Maybe at my next marathon…
LOVE,
Lindsey
MCS XXIII
February 25th, 2010 at 8:11 pm (#)
Hi Brad, Emily, and Maddie,
I just thought to check in on the blog, and I’m so excited to find out that you’ve finally reached the finish line! I’m so happy for all of you, as well as relieved, and I wish you all the best. Please be in touch, and stay warm in all of this snow!
Love,
Angela
MCS 39
March 4th, 2010 at 12:47 pm (#)
Emily + Brad-
I’m looking at your website for the first time in a while! Great news re Maddie. That is a lot of Bactrim!!! You were both the topic of conversation at lunch today when I discovered that Rick Tony, who teaches math here at SSA, mentioned that he taught at LCD in the early 1990s. Great guy. Hope you are enjoying VT! Cheers to Maddie!!!!!
Colty
March 19th, 2010 at 12:27 am (#)
Emily-
My best friend who lives in Portland just forwarded your website to me as inspiration. She had been following your story for the past couple of years. My 4 yr old son Kevin was diagnosed with ALL last Sept. I am so looking forward to the day that we can slam dunk all of his leftover meds into the garbage can!! I will be running my first Boston Marathon in a few weeks with the Dana-Farber Marathon Challenge Team- my son is my running partner too. Your family’s story is very special- thank you for sharing it!
-Cara Rich
March 26th, 2010 at 5:50 pm (#)
Congratulations Maddie, Emily and Brad on completing treatment. We share your AHHHHH! feeling of getting to this significant milestone, and we wish you nothing but the best of health and much continued happiness in life. Our Neve completed her treatment about a month before Maddie, and we truly appreciate how you have turned a devastating situation for any parent into an educational opportunity, coupled with tremendous funds raised for Maine Children’s Cancer Program. What you have done is wonderful, and very appreciated. As parents we applaud you, and thank you for doing this. Maddie, we hope that you and Neve live long, happy and healthy lives, and we will all continue to tell the story of childhood cancer to raise awareness and funding so hopefully one day, children will not have to endure what you both have. All our best- Gretchen, Phil, Finn & Neve – your friends in Portland, Maine- fellow family survivors of ALL.
April 26th, 2010 at 4:29 pm (#)
I was so happy to check in and find Maddie has made it through the trial. A child in my daughter’s class in preschool went through a similar battle. I can report he has just about finished his freshman year of college. Go Maddie, life is now yours to live. Best of luck to Emily and Brad and all the animals on the farm.
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