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.