It’s been a long road… but SHE DID IT!
Dr. Bob and Maddie
Maddie took her last chemo meds by mouth on March 25th and endured her last spinal tap and bone marrow biopsy on March 27th! Her spinal fluid and bone marrow was clean and cancer free!!!!!!
It’s been 26 months since Maddie was diagnosed with Acute Lymphoblastic Leukemia, and she fought it like a champ. Yes, there were many bumps on her journey, and challenges along the way – both emotional and physical – but she stuck it out and trudged along, knowing she had to stay strong to fight this terrible disease that had invaded her little body. Maddie has hundreds of beads to remind her just how many times she’s struggled with merely the thought of her next treatment or poke. And although she wants to completely erase it from her memory, she will one day realize that these past two years of her life is something she should never forget. Remembering her battle will help her recognize and comprehend the strength that lies within her… it will keep her humble and always remind her how fragile life is – but most importantly, it will remind her how necessary and critical it is to give back to those who have helped save her life, and for her to live life to it’s fullest – for there are great plans for her.
Maddie is already learning to give back. During Girl Scout cookie sales, Maddie collected donations for her personal mission, “Operation: Smile”. Monies donated to Operation Smile are used to buy cookies for kids and their families both inpatient and outpatient at Kapiolani Hospital and the Pediatric Ambulatory Unit (PAU) where kids like Maddie are treated for cancer and blood disorders. This year, Maddie recruited her Brownie sisters (who happily agreed) to help her deliver the cookies. The girls went room by room to explain the different types of cookies they could choose from, and they got to see how happy it made the kids and their families… mission accomplished!
Thank you to all who donated generously to Relay for Life, to help fund finding a cure for cancer. With your help, Maddie raised over $2000 for the American Cancer Society for this event! This will become an annual event that we will participate in. Later this year, we will make our own team for the first time. Wanna join us? Relay for Life honors those who are battling cancer and those who have lost their lives to the disease. It’s an emotional 12 hour overnight stay that represents the first 12 hours of a cancer victim’s life as they start treatment – the cold and the darkness they face early on. It’s a touching event that everyone should experience at least once. Stay tuned for more info on the Magic Island Relay for Life late summer(?).
Scott and I want to thank you – many dear friends we’ve known for years and new friends discovered during our journey – for walking alongside of Maddie and our family down this long, dark and gloomy tunnel. At the darkest and dreariest part, you were right beside us, holding our hands and encouraging us to keep going – sometimes even carrying us. Through your compassion and graciousness, you gave us comfort. Through your prayers and encouragement, you gave us hope. You were always there when we needed you, and we are absolutely blessed to have each and every one of you in our life.
We will continue to post updates on this blog to let you know how Maddie is coming along… and Trevor too! We’ll post fun stuff this time! Since treatment ended a couple of weeks ago, Maddie and Trevor have both learned to ride their bikes without training wheels and started swimming daily again! Maddie is FULL of energy and is craving life more than ever! When we asked Maddie how she wanted to celebrate this HUMUNGOUS occassion, she said Legoland and Disneyland of course!
TO MY APPOINTMENT!
Maddie is now on “steady treatment” which means she will continue to take blood tests once a month along with a broad spectrum antibiotic given through her port. Her next blood test will be at the end of April. I have to say that I am a little nervous about it since it will be her first blood test since treatment ended. After 6 months, her port may be removed and the antibiotic will stop. After the next 6 months, blood tests will be done every other month, and spread out further for the next 5 years when tests will then be done annually for the rest of her life. The risk of relapse in the first year after treatment is completed is about 2%, and continues to drop every subsequent year. Maddie will be considered an official survivor after 5 years of remission, so prayers to keep her body cancer free is still needed! Dr. Bob said to go and live as normal a life as possible now. He said to treat Maddie like a regular kid. Play sports, be around sick people… but coming to the hospital every week WAS normal for us. That’s all we can remember. It became so routine for Maddie too. She knew what day of the week she’d have to catch the bus with Nana to meet me in town for her appointments (she will definitely miss riding The Bus so often!) We scheduled our lives around Maddie’s weekly ANC. Dr. Bob said there’s life outside this hospital, and he’s right. It’s just a little disquieting to transition back to a relatively “normal” life and trust that she’ll be ok. But we have to be as ecstatic about starting a “new life” as Maddie is – and boy… is she ever!
WATCH OUT WORLD…. HERE SHE COMES!
With ALL our love and a deep heartfelt THANK YOU,
Scott and Janelle
Maddie turned 8 on June 7th, but celebrated her special day just last weekend! She got sick several days prior to her scheduled party in June and had confirmed Influenza A – possibly Swine Flu – so the party was postponed, but she enjoyed it all the more – plus she got to be the birthday girl for an extra month! Maddie had a great day with her friends and family at the park. The kids played and played til they could play no more… and slept extremely well that night!
On January 15th Madison was on the morning news promoting the 2009 Girl Scout Cookie sale. Yes, its that time of year again and if you want to get your order in please let us know before Friday January 30th. You can contact me at scott.komatsu@gmail.com or maddie, madison.komatsu@gmail.com thank you for all of your love and support!
